Osteoporosis and Hyperparathyroid disease [Archive]

linda.b

11-23-2001, 03:32 PM

Osteoporosis and hyperparathyroid disease
Does anybody out there suffer from osteoporosis caused by hyperparathyroid (NOT thyroid!!) disease? If so, I would love to hear from you.
I am 55 years old . About 5 years ago, I started feeling tired, lacked energy and started to find life a real struggle. My doctor dismissed this as a ‘time of your life problem’ and offered very little help. My health deteriorated over several years and further severe symptoms appeared (anxiety, muscle weakness, joint pain, bone pain, stiffness, etc.). Eventually, 1½ years ago, I was diagnosed as having primary hyperparathyroid disease (pHPT). One of the four, tiny parathyroid glands in my neck had become overactive. By then, my quality of life was very poor. I could only move with difficulty and pain, I couldn’t sleep, I had psychological problems……..Then I found that I had severe osteoporosis. All these symptoms were caused by pHPT.
About a year ago, I had a successful operation to remove the overactive gland. My symptoms slowly started to improve. But, 6 months after the operation, my consultant put me on Fosamax to increase my bone density. This was a disaster for me because the Fosamax reversed the improvement in my symptoms. After 6 months on Fosamax, I was almost back to square one with considerable pain and stiffness. 3 months ago, I stopped the Fosamax. I am once again improving except that I have recently had an eye problem. Fortunately, I found the messages about Fosamax and eye problems on the old HealthBoard osteoporosis message board. These were very helpful and informative for me.
So, is anybody out there with similar problems to mine??

Sponsor

shadow50

03-26-2005, 01:36 PM

My problem is I developed hyperparathyroidism and after many months of being sick and being told it was just due to depression I literally begged to have have some lab work done because I new it was different than past depressive symtoms. I was diagnosised with hyperpathyroidism and had the surgery. However, after the surgery my parathyroid hormone level never returned to normal and started going back up. I think the last was 158 with 65 being high normal. However, my calcium levels returned to normal. I still don't feel well, but was reminded rather rudely that I had mood disorder before the endocrine problem and was referred back to my psychiatrist. I don't know if all of this is in my head or what, but I still have the left hip pain, nausea ,sleep disturbances, mood irritability and try to pretend I'm fine. It may all be stress related who knows. I was just wondering if anyone else out there has experienced this type of problem after their parathyroidectomy. I just want to feel well again and am concerned that the elevated PTH level could be causing stress on my body. I made an appointment to see a rheumatologist, but I still have a month before he can see me. Any response would be helpful. Thanks. Shadow 50

phu13

03-28-2005, 07:55 PM

I'd like to keep this topic going. I am 5 days post parathyroidectomy for an ectopic parathryroid adenoma (anterior mediastinum) which was successfully removed with a minimally invasive approach (thorascope). I don't know what to expect in terms of recovery. My pre-op symptoms were vague, though I'm inclined to believe not unusual for hyperparathyroidism. Probably over the last 5 yrs, I've noticed marked tenderness in my hips, at the crease of my thigh/groin and the bones and muscles of my feet. I'd often think, I feel like I have the flu. I have not had kidney stones. I have osteopenia (bone density scan). I spent a year deciding to have the surgery (cure) vs. lifetime monitoring. According to my surgeons (endocrine and thoracic), the surgery went extremely well. The PTH dropped and the calcium stabilized. I left the hospital with a small pneumothorax (collapsed lung), which I'm told will resolve on its own. I'm not particularly sore at the chest tube site. I feel like getting out and about, however, I do bottom out mid-afternoon. Then all my tender spots seem more tender than ever. Needless to say, I still harbor reservations about whether there isn't something else at work in my body. I realize it's much too soon to judge, but I sure am interested (like you) to hear anything about hyperparathyroidism, since there doesn't seem to be much out there. I am grateful no one suggested Fosamax. That sounds like a nightmare. If my "symptoms" resolve, then I may be a person others can draw support from. So, I'm just getting this out there, because it does make me feel a little loopy in the head, because when I feel lousy, I tend to beat up on myself. The mind chatter is there's worse things out there. You don't exercise enough. It's nothing. So for now, I feel hopeful.

spitvit

04-25-2005, 12:53 AM

Hello, I am very interested in asking phu13, was your parathyroid adenoma located prior to surgery and if so how? I have elevated PTH, normal calcium levels, severe kidney stones that have gone on so long that I now have signs of renal failure as well as often feeling fluish, trouble sleeping and irritability. I am being sent far from my home to see an endocrine surgeon who is supposedly the best but I am still being told that I have to have a "neck exploration surgery" (10" incision!!) because my adenoma was not located via sestamibi scan or ultrasound. I would really rather have the gland located prior to the surgery so I can have a mini surgery. Any info anyone has in regards to this would be so much appreciated as I am quite frightened about someone digging around in my neck! Thanks!

lily1954

05-02-2005, 12:55 AM

Shadow I haven't had my surgery yet but wish you luck and let us know what your rheumatologist finds. Thanks Lily 54

lily1954

05-02-2005, 01:04 AM

spitvit,
They haven't found my adenoma yet either and suggested a neck exploration surgery so i found a new surgeon that does the minimally invasive surg. I also have thyroid nodules that have to be retested and another sestimibi scan. Does anyone with this illness have vitamin d deficiency?

jayv

05-06-2005, 07:17 PM

Hi,
Did anyone here visited the website www.parathyroid.com or have experiences having minimally invasive parathyroid surgery with Dr.Norman in Florida. According to his website, he seems to be the pioneer in this procedure.

I have recently been diagnosed with hyperparathyroidism and after some research on the disease I decided to go for the minimal invasive surgery procedure. I live in California, but I have scheduled a surgery beginning of June with Dr.Norman in florida. I would really appreciate if I could get any feedback on this or anyone who has experience in the MIRP procedure and their experiences.

-Jay

CrohnieToo

05-06-2005, 08:08 PM

Boy, I'd be leery of having parathyroid surgery too if they couldn't locate an adenoma! Have you guys really poured over your blood draw results and urine tests and thoroughly discussed and questioned them with your endocrinologists?

Secondary hyperparathyroidism can be caused by malabsorption problems and/or by renal problems. Vitamin D deficiency that we are reading so much about now can cause secondary hyperparathyroidism.

I hope that you are all able to work this out and get some relief whether thru surgery or whatever. Good luck and God bless!!!

cayura

05-07-2005, 12:16 AM

I have just been diagnosed with hyperparathyroid. I was going to wait for a second opinion because they did not locate the gland on the scan, but my BP has shot up from it's usual 105/65 to 170/100! I think i am going to pop! Started bP medicine today because i didn't think i should wait on that. How can you go from low BP for 56 years, then pop! I am considering a second opinion with a doctor Kokura who my friend had do an op a year ago or Dr. Norman in Tampa. ANyone have any feedback?

tsmur

05-08-2005, 12:21 AM

I recently had my endocrinologist test my parathyroid hormone levels because of kidney stones in the past and now again in the present.

My PTH level was 76 w/ normal being (10 - 65) pg/mL
My calcium level was 9.1 w/ normal being (8.8 - 10.1) mg/dL

Does this mean Hyperparathyroidism?

Tsmur

CrohnieToo

05-08-2005, 11:13 AM

I'm not sure that anyone but your doctors could answer that. Tests for hyperparathyroidism "usually" include low serum calcium rather than high normal. Other results could be abnormal serum phosphorus levels, either high or low; elevated serum alkaline phosphatase, variable vitamin D levels (both 25 D OH and 25 D1 OH) and/or abnormal urine calcium levels, either high or low. I've forgotten the physical symptoms other than bone and joint pain. I would think an internet search on hyperparathyroidism should bring those up. Good luck and God bless.

cayura

05-09-2005, 12:18 PM

I'm going for a second opinion next week. I have elevated calcium, elevated ionized calcium and elevated parathyroid hormone levels. The scan did not locate the malfunctioning gland, so I'm not sure than an op is the way to go, but i'm trying to be proactive, though all i want to do is crawl under a rock and have it all go away.

CrohnieToo

05-11-2005, 04:47 PM

Ha! Since my last parathyroid blood draw was drawn at my Endo's office and sent to Quest Labs for testing I think I know why she prefers I have my draws done at a Quest Lab! Quest pretty much does the Dx'ing for her!!!

The Quest Lab report not only gives the test levels but also an "Interpretive Guide" which gives the Intact PTH in relation to Calcium.

The normal PTH lab reference ranges are 10 - 65 pg/ml, the Calcium reference ranges may vary from lab to lab.

So PTH intact level <20 and low calcium level would indicate Hypoparathyroidism.
PTH intact level >65 and high calcium level would indicate Primary hyperparathyroidism.
PTH intact level >65 and normal or low calcium level would indicate Secondary hyperparathyroidism and
PTH intact level <20 with high calcium level would indicate Non-parathyroid hypercalcemia

QueenBmaster

05-20-2005, 07:48 AM

I've been suffering with hyperparathroidism since 2001. I had surgery Nov 2001, and had three and one half of the parathyroids removed. I'm still battling this conditon, with my boold calcium levels yo, yoing up and down all the time. I have chronic pain in the right flank, chronic fatigue, and bone pain. I now have kidney stones, my first that I'm aware of having. The Dr said it was small enough, it should pass on it's own. That was last week, and still not passed. Now I'm going for more tests to see if it is caught. I'm also having problems starting with the gallblader, not sure yet if this is realted to the hyperparathyroidism. I feel for anyone who is experciencing this condition. Surgery was supposed to cure me, but unfortunately it didn't. Has anyone else had the surgery, and not been cured?

Becca

trakster

05-20-2005, 07:57 PM

I recently had a hyperparathyroid removed on April 25th. I had my surgery performed in Northern Virginia by a doctor who was recommended to me by serveral people. It seems there must surgeons who are more than capable of performing this type of surgery. This type of operations has been around for a few years now so there are many doctors who have experience.

Unlike the doctor in Florida, my doctor does not recommend that this surgery be performed under a local anesthia. Since the patient is still awake there is a possibility that the patient may move. This can have harmful results as you may have read from an earlier post. My surgery was done on an outpatient basis. My surgery was performed under general anesthsia. The surgery took a little over an hour. One reason why it took longer than what Dr. Norman would say it should take is that my doctor took several blood samples before, during, and after the surgery. These blood samples were taken to monitor my PTH levels. My PTH level was as high as 153 prior and after the surgery it was down to 65. Tissue was also taken to verify by a second source that the parathyroid removed was an adenoma.

I was out of the hospital by 3:30 p.m., driven home by my wife.

Unless you really want to go to Florida I recommend for you to find a local surgeon that has performed this type of operation and comes highly recommended. If you have any complications or issues on the operation you will not have to go back to Florida.

Good luck on your operation!! :)

trakster

05-20-2005, 08:06 PM

Quick answer: No. Your calcium is level is well within range. Your PTH is higher than normal but not alarming. I heard that alcohol can raise the PTH level in your blood. There may be other fluids or food that can increase the PTH.

hurtinbad

05-24-2005, 03:31 AM

I feel I am too young to feel so horrible and been telling many dr(s) this but never any answers. I have been suffering for years from what was thought by dr(s) was only caused by my hypothyroidism, which I do have. My symptoms never improved after medication. I feel so horrible everyday from back pain, extreme fatigue, kidney stones ,depression ,confusion, anxiety, and more. Recently I have been going through spells of severe confusion ,at times shortness of breath, horrible arthritis in both my hands, and I just cant handle any heat with out sweating badly. I thought this was from low potassium but I am unsure just like every Dr. I am never thirsty but I force myself. I also have very cloudy urine but it tests normal. I also have low potassium, high normal calcium, low magnesium, high ferritin, high platelets, extremly high levels of autoimmune thyroid antibodies(TPO) ,CRP 8+,PTH tests normal each time. The Dr.'s say I have evidence of inflammation, but where? Why? I have large kidneys but also told it may be because I am so tall 6'4" a recent ivp shows they have good blood flow and labs are in the norm so they tell me they are ok, I am unsure. A recent bone scan done last week shows Osteoporosis. I also notice my nails which a year ago were healthy are now dull, brittle, and thin. I want this to all end I feel for everyone who has suffered from this. It has been years of actively searching for the answer but I think I found it. I had a blood test today at the hospital to test PTH. I was told that to get a accurate PTH the blood needs to be centrifuged minutes after draw! This may be why I have been looking for an answer for years. The thought of this procedure not being done earlier(years ago) is painful. If this is true why does it happen? I learned this from a respected well known Endocrinologist in S. CA. so I believe it. I have not been diagnosed yet with this but I think I will. I just hope it is not a secondary form from kidneys :eek: I am afraid.

meemaj

05-25-2005, 01:23 AM

Jay, last week I had an appointment with my endocrinologist to confirm that I need surgery for pHPTH. This doctor is extremely well-known and well-respected in this field, at a major hospital in NYC. I too have seen Dr. Norman's website and was considering him as a possible surgeon. I asked my endocrinologist about Dr. Norman. My doctor is not a fan of Dr. Norman's. To answer your question, I'd consider other surgeons also before making your decision. I am going to Yale in New Haven, Connecticut for my surgery, to one of the top surgeons in the US for this type of surgery.--meemaj

UPDATE: June 1, 2005 - Coincidentally, today at a social occasion I met a fine endocrinologist who practices in Florida. This doctor has referred many patients to Dr. Norman and thinks he is fine and does the surgery efficiently and quickly. The patients have fine recoveries.

phu13

05-25-2005, 06:14 PM

To: spitvit
Haven't been back to this site for a while, because I've been doing well for the most part. Prior to my surgery, I researched constantly. Most important: find an endocrine surgeon who's skilled specifically in "parathyroid" disease. I live in RI. We have an expert in Providence. In answer to your question, my adenoma was initially found on Sestamibi scan and further confirmed (later date) by specialized CT scan (interpreted by a radiologist who this surgeon particularly trusts). I consider myself fortunate. I certainly would be concerned that someone needed 10 inches to "explore." Having seen many neck incisions (thyroidectomies), the scars are very faint and short at the necklace line. 10 inches sounds extreme, unless there are other factors in your case. Incidentally, I did have to agree to neck exploration, if they were not successful with the thoracic approach. But both the endocrine and thoracic surgeon were highly confident that it would come out easily (it did) and it would be parathyroid tissue (it was). With signs of renal failure, it certainly is time to be treated, no matter what. In the end it's a matter of trust. Keep me posted. Good Health/Healing to you.

writerrosebud

05-29-2005, 01:38 PM

I am so happy to find this recent post from someone with hyperparathyroidism, since I was just diagnosed with this condition. After a horrible year in which I was fired from several jobs for symptoms this disease causes, (brain-fog, coordination problems, etc) all the while the dr. failing to find what was causing these problems.

Now I face the daunting challenge of what doctor I can trust to do the surgery right. I am looking for an experienced surgeon who is considered to be the expert in mini-parathyroidectomy. I would like to hear experiences from everyone who has had parathyroid surgery (both mini-surgery and the regular old-fashioned surgery), to hear the good and the bad, the praises and the warnings. And names of surgeons to avoid as well as which surgeons did a great job. Please email replies to [ please carefully review the posting rules - no emails ] as well as post here. Thanks so much.

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shoostar

06-03-2005, 08:11 PM

A MIRACLE... I had hyperparathyroid surgery 20 years ago when it was rarely heard of. I was 28 then and scared to death. I went to NIH since they were very interested and studying hyperparathyroidism. My bones ached and ached, mostly my legs and my bones around my shoulders and chest. After seeing the doctors for months and checking my calcium levels which were very elevated, I decided to go on with the surgery. They removed 2 pea-size glands in my neck and left one in. By the way, that was called exploratory surgery and I wasn't happy at all about that but the pain was too much. I was so worried at that time about a scar because I was young and didn't want this big scar on my neck, but honestly, it wasn't as noticable as I imagined, and I can barely see it now. After the surgery, my calcium levels were checked often and continued to be high. The surgery was considered unsuccessful so I left the hospital very disappointed. However, 6 months later I experienced extreme tingling in my finger tips and toes and went in to get my calcium levels checked and they were NORMAL. The doctor had never heard of such a delay in calcium levels to drop back down after surgery. He wrote me up in the books. I prayed alot....and a miracle happened. :bouncing:

writerrosebud

06-03-2005, 08:53 PM

Great to hear from you folks and your HPT experiences! I have a question for the previous 2 posters, namely "Meema" and "Phu13".

To Meema: You said your endocrinologist is "extremely well-known and well-respected". Please can you tell me his name? And what was the reason that he did not like Dr. Norman? This is important to me because I was thinking about going to Dr. Norman for the MIRP (mini-surgery). Thanks very much for the June 1, 2005 update clarifying the positive experiences the Florida endocrinologist has had with Dr. Norman.

You said you are going to Yale in New Haven, CT for your surgery to one of the top parathyroid surgeons. Please tell me his name. And I would like to hear your experience after you go.

To Phu13: Please tell me the name of your expert parathyroid surgeon in Providence, RI.

writerrosebud

06-03-2005, 09:13 PM

To "Spitvit" (4-24-05) Dr. Norman in Florida claims he has special exclusive equipment that enables him to find the adenoma prior to surgery, even if other doctors have failed to find it. He says he shows the adenoma to the patient before the operation.

meemaj

06-04-2005, 10:17 PM

meemaj

06-04-2005, 10:40 PM

Hi, writerosebud. I ordinarily would be very happy to give you my endocrinologist's name, but I find myself in an uncomfortable position and it is my own doing. If I post his name, then it is public how he feels about Dr. Norman. For me to have said what I did about Dr. Norman was like 'hearsay' and I should not have spoken for my doctor. This is the first time I've ever done a 'chat' and I've learned my lesson!

The surgeon at Yale is Dr. Robert Udelsman. Do a Google on him and you'll see his credentials are excellent. I haven't met him yet and the receptionist said I probably will have to wait until September to have the surgery!

As for Dr. Norman, I do know of a woman in NJ who had the surgery done by him last August and she was very pleased. With her recommendation and the positive experiences of the endocrinologist in Florida who refers to him, I think I've done enough damage to the guy. And the same Florida endo said he does the surgery in 15 or 20 minutes. In addition, my endo did not say anything about Dr. Norman that implied that he is dangerous in any way.

What is your situation? Where are you located and how soon do you plan to have the surgery? I wish you all the best and would appreciate hearing your experiences with the doctors you end up choosing.

Take care!
meema

phagelod

06-06-2005, 01:34 PM

I've been fatigued, brainfogged, etc. for about 20 years. I now know that I tend to have elevated calcium and calcitriol. The two likely culprits are either pHPT or an inflammatory condition (e.g., sarcoidosis, Crohn's, etc.). PTH would be high in the former and low in the latter. So I plan on getting that measured.

For those of you with pHPT:

First, do you experience "sunshine flares"? That is, do you feel worse after receiving an extended dose of sunshine on your skin?

Second, do you (paradoxically) feel worse during dark, cloudy weather?

Thanks

CrohnieToo

06-07-2005, 11:35 PM

Phagelod, I also have Crohn's disease - since mid-1975, Dx'd early 1976. I am seeing a new Endocrinologist later this week. The current Endo has Dx'd me with osteomalacia (in addition to osteoporosis) and secondary hyperparathyroidism and has scripted 100,000 IU of vitamin D weekly for the last 15 months. The current Endo also insists that I not start Forteo or IV pamidronate until my PTH is below 30 and my vitamin D 25 hydroxy higher (but I haven't been able to pin her down on how high she wants it). I've lost ground again this past year with a worsening of my T-scores.

annieb214

06-23-2005, 11:13 PM

Hello All,
I am a 38 year old female just diagnosed with severe osteoporosis after shattering a bone in my foot. I had a kidney stone about 6 months ago and have been feeling way out of sorts for awhile (thought it was just stress). I have been referred to an endocrinologist for tests. I have not been diagnosed yet, but am thinking that hyperparathyroidism is the most likely cause of this mess. I am hoping that you all can answer some of my questions... how much bone rebuilding is realistic post treatment? Does anyone know of a very experienced parathyroid surgeon in Texas? How does one know if you have a really good endocrinologist? Thank you!
:D

meemaj

06-24-2005, 02:26 AM

Hi, Annie.

My first endocrinologist said this to me when she diagnosed my pHPT last October....

She said "If I had Osteoporosis, I would WANT to have pHPT because after it is fixed you gain a LOT of bone!" I hope that encourages you.

Meemaj

annieb214

06-24-2005, 11:43 AM

Meemaj,
Thank you for being a bright spot in my day. I appreciate your prompt response and I will keep hope alive!

Annie
:)

mudpie1970

07-01-2005, 02:15 PM

I would like to obtain a listing of enodcrinologists as well who will perform this surgery for hyperparathyroidism. My father's current endocrinologist isn't familiar with this condition and I need some other suggestions. If there are any excellent ones in the Texas/Arkansas/Louisiana area that would be great.

shannondkeith

07-14-2005, 06:18 PM

Well I'm mad as a hornet now. I've been going to doctors for 10 years now for symptoms that have been getting gradually worse. I've been told I need tranquilizers and sleeping pills; I've been told I have Morton's neuroma and RSDS; I've been told I'm perfectly normal and that I need counseling. NOW, after all that time, my bloodwork came back with high calcium. NOW, I get a bone density screening at a work health fair and find out I'm -2.5! My doctor took blood for a PTH and calcium test Monday. Why has it take 10 YEARS? I've been dealing with vertigo, headaches, fatigue, sleeplessness, broken fingers, difficulty concentrating, forgetfulness, depression, sore muscles, sore joints, poor coordination. I'm so glad you folks are here. So tell me, how bad is the surgery if that's what it comes down to? I'm scared to death of being cut on, but I'm tired of being in pain. My mom had osteoporosis, and from looking at the pictures, I'd say her mom did, too. I'm a 42 year old 5'1", 100 lbs, white and skinny female. Does it sound like I'm one of you? OOoo, I'm so frustrated that I could just spit.

trakster

07-14-2005, 10:28 PM

[shannondkeith]I've been dealing with vertigo, headaches, fatigue, sleeplessness, broken fingers, difficulty concentrating, forgetfulness, depression, sore muscles, sore joints, poor coordination. I'm so glad you folks are here. So tell me, how bad is the surgery if that's what it comes down to? I'm scared to death of being cut on, but I'm tired of being in pain. ]

I had the surgery 3 months ago and it wasn't bad at all. I'm a 50-year old male, 180 lbs, and have a bone density of -2.7, -2.3, -1.7 on my forearm, spine, and hip respectively. Post-op I'm taking lots of calcium and Fosamax. I'm back lifting weights, riding my bike, and running. Unfortunately, the progress is slow. My muscle strength has been the slowest. The worst pain I had was in my forearm and that has subsided to where the pain is half of what it was. I have many of the symptons you mentioned except no broken bones. Fortunately they found it after only a year. Before the surgery you'll go in for a sistemibi scan to locate the evil parathyroid for the doc. Have the surgery, you will feel better. :)

trakster

07-14-2005, 10:34 PM

nr2go

07-17-2005, 11:41 PM

trakster

07-18-2005, 06:46 AM

I was recently diagnosed with hyperparathyroidism myself. I live in northern Virginia and was wondering in which hospital your surgery was performed since it was on an outpatient basis. Did they use the radioguided procedure that Dr. Norman talks about? Reason I ask is because I am being refered to a general surgeon and am being told that I will have to stay one night in the hospital. I have also been told that there will be a 2" to 3" scar.

I had my surgery at Inova Fairfax and it was on an outpatient basis. My surgeon was Dr. William Purkert (General Surgeon) in Fairfax. He came highly recommended from a co-worker who's wife had thyroid surgery plus my endocrinologist also recommended him. He was also the most recommended in Checkbook.org. The surgery itself lasted 1.5 hours. The scar is ~1.5 inches (no stitches). I also recommend him. He is very careful and very thorough. No, he doesn't use the radioactive-guided MIRP.

meemaj

07-19-2005, 11:07 AM

Hi, Trakster.

Thanks for the encouraging news about your improvement after surgery. I have a lot of tendonitis in both my forearms. When you mentioned muscle pain in your forearm, were you referring to tendonitis or something else? I'd be thrilled if the tendonitis will improve after I have my surgery in September.

What is the post-op recovery like? How long before you were back to your normal routine? Did you have to take it easy for a day, a week, more? I'm just trying to plan ahead....

Thanks!
meemaj :wave:

trakster

07-19-2005, 05:47 PM

Hi, Trakster.

Thanks for the encouraging news about your improvement after surgery. I have a lot of tendonitis in both my forearms. ....Did you have to take it easy for a day, a week, more? I'm just trying to plan ahead....

Thanks!
meemaj :wave:

I was referring to the tendonitis. As to a normal routine, I'm not there yet. I believe it will take quite a while for my bones to rebuild back to where they were. One thing I noticed is when I do any running, biking, or elliptical, my extremities (feet, fingers, joints) tingle. I'm not sure if its because of the Fosamox or part of the rebuilding process. My worst sympton has been my dizziness or giddiness. Its really giddiness, which is a swirling sensation in your head. Dizziness relates more to vertigo type symptons. That has been less severe since the operation. My spouse says my mental attitude has improved since that time. So there have been some positives.

On the surgery, I did take a week off from the day of surgery. Even though its outpatient it takes a while for the anethesia to wear off. Because of the many symptons hPTH has, and the length of time the person has had it, I think each person will have a different reaction to the surgery and a different recovery. I have searched many sites looking for clues on how to recover and rebuild the bones. And what signs you get from your body. Good luck with your surgery in September but even more luck on the recovery.

Trakster

meemaj

07-20-2005, 01:50 AM

I think I've been unrealistic in my expectation about post-surgery being a quick, simple recovery. I was thinking I'd be back to my normal routine by the following week. I appreciate your sharing your experience so I can prepare myself better.

Did you have 1 gland removed or more? I have had 2 Sestamibi scans and neither was definitive as to which gland(s) it is, so the surgeon will have to hunt around for it (or them). I'm not looking forward to that!

You probably already know this, but I thought I'd share some information from a pamphlet my surgeon gave to me. It mentions that your calcium level may drop after surgery, causing numbness or tingling of the fingers or around the mouth. It says to take 2 extra-strength Tums every 4-6 hours and that your calcium level should be monitored through blood tests. It sounds like you're already doing that. Please keep us posted on your progress and thanks again for the info. Keep feeling better and better!

Meemaj

meemaj

07-21-2005, 02:24 AM

Hi, Beverly.

I'm not sure if you were directing your question about a surgeon to me, but I'll answer it anyway. I am scheduled for surgery on Sept. 20th with Dr. Robert Udelsman, who specializes in PTH surgery. He is supposed to be one of the 2 best in the U.S. The other one is in San Francisco. I don't know his name. Dr. Udelsman is head of the surgery dept at Yale in New Haven, CT. I am traveling from NJ to go there for the surgery as I have been told that the most important thing is to have a very experienced surgeon do the surgery and he is highly respected and recommended.

If you read back in this thread, you'll find a discussion about surgeons that may be helpful to you. Let us know where you decide to go and best of luck to you and to all of us!

I am a 62 year old female and was diagnosed last October.
meemaj

Canyondweller

07-21-2005, 02:53 AM

Wow, I am so glad I found this as I just posted about this question under osteoporosis today. Somehow I missed this thread. I was called today about my DEXA saying my wrist showed a problem that indicated Hyperparathyroid problem. I already had made appt. with endocrinologist when I had DEXA as previous tests showed Osteo. There doesn't seem to be any way to correct this from what I read except for surgery which may not be an option for me because of Emphysema and chronic bronchitis. Of course, it may be necessary. Except for the Osteo I have no other symptoms. Blood calcium has always been normal around 8 or 9 and I went back 5 years of blood work. How is the best way to diagnose this. Any suggestions on what to ask the endocrinologist would be appreciated. I understand she is tops and associated with University of California SF. I don't know whether to get all uptight about this or not. I am 68. Thanks so much for any help.

meemaj

07-22-2005, 01:13 AM

As far as tests go, they will probably test your parathyroid hormone level (PTH) which is just a blood test. Then there is a 24-hour urine collection that gives more info about how much calcium is in your urine. Keep us posted on how it goes. --meema j

Canyondweller

07-22-2005, 01:16 AM

Well, the 24 hr urine test should be fun as I am one of those seniors that has a little problem when coughing or sneezing. I also have a really small bladder. Maybe I will have to wear a bucket or something. LOL Yes, I will keep up on the board. it is a great source for many medical problems.

CrohnieToo

07-22-2005, 04:39 AM

spinewhine

07-23-2005, 12:22 AM

Hey, CanyonDweller, wouldn't it be great if we could figure out a way to bottle that stuff and sell it?? I know I'd be rich! Piddling has always been my "forte" even as a kid! When I did the 24 hour urine test as an outpatient at Mayo Clinic, Rochester, I wasn't happy about carrying that urine bottle around w/me all day thru all the other outpatient testing - ugh, embarrassing - UNTIL I looked around me and saw all the other "bottles" being carried around!!! I filled my bottle right up to w/in a 1/4" of the top. Was sweating out whether the last "batch" was gonna fit in there or not!

You're worried about selling it -- I was worried about it getting stolen! I stayed home from work the day I did the 24 hour urine. No way I was putting my big orange urine bottle in the office fridge. Not to mention my privacy, but we'd had some food stolen from the communal fridge at my office a few years ago, and I thought, hey, what if someone thinks this is juice, and swipes it. My own particular view (and I posted this before) is that someone who steals what they think is someone else's juice from the fridge deserves to get a bottle of urine for their trouble, but no way do I want to be starting from scratch. That test is a real pain.

meemaj

07-23-2005, 01:27 AM

I've done that 24 hour urine collection so many times that I have it down to a science. May I recommend an easy way to collect it for us females? I use the removable wide-mouthed receptacle from the potty that I keep here for my grandkids. It's like a huge measuring cup and aim is not a problem. Potties don't cost very much. You know that old expression.....? Well, luckily I do have a pot to pee in! :) All my best. - meema j

Canyondweller

07-23-2005, 01:32 AM

Thanks, that is a good idea. I recently had to do the"other" test and ended up installing a plastic grocery store bag under the seat. It worked great but I don't think I would try that for this test. I was thinking about those things they use in the hospital to keep track of your output. They only cover half the toilet. Yuck, why am I talking about this but good ideas need to be passed around. I think I will stay home that day also. LOL :wave:

trakster

07-24-2005, 09:03 PM

Wow, I am so glad I found this as I just posted about this question under osteoporosis today... Blood calcium has always been normal around 8 or 9 and I went back 5 years of blood work. How is the best way to diagnose this. Any suggestions on what to ask the endocrinologist would be appreciated. I understand she is tops and associated with University of California SF. I don't know whether to get all uptight about this or not. I am 68. Thanks so much for any help.

Seeing that you have normal calcium levels I find it surprising that your doctor would say you have hyperparathyroid. Normally, ypur calcium levels must be are over 10.3 and your parathyrod hormone level is above 100 (even though hormone level of 65 is the max). Since you have normal calcium level and never had the blood work for the PTH I would find it hard to believe you have hyperparathyroid. BUT, I could be wrong. If you do have hyperparathyroid, don't get uptight, many people your age have the procedure to remove the culprit. In fact, my vet's mother at it done at age 92 and did well.

Canyondweller

07-25-2005, 01:48 AM

Thanks for answering. I cannot have any proceedure on my neck or throat because of my Emphysema and chronic bronchitis which is always with me. I would cough out any incision in or out so I know this is not a possibility for me which is why I am more concerned. I have constant "junk" that I have to get up and sometimes it takes and hour or more of real coughing a day to clear my lungs. Actually my gyno called me and that is what was on the test results sent to her from endocrinologist who has not seen any blood work from me. I don't think my gyno Dr. has seen any blood work either. I am taking my past blood work with me. One was only 3 weeks ago. I have never had the parathyroid hormone checked with blood work but like you everything I have read says my calcium should be high. I am sure my internist would have picked it up too so we shall see. I have had more than 5 workups in last 5 years because of trips to ER due to breathing problems so somewhere in that it seems it would have shown up.I am hoping I don't have it because of not being able to have the surgery. It will be interesting. :wave:

Canyondweller

07-25-2005, 06:31 PM

Saw Endocrinologist today, she has ordered blood tests and 24 hour urine as expected. Results of DEXA were actually better than I expected. The ct scan from almost 3 years ago had my spine at 4.5, DEXA 2.5 - hip 1.5 neck 1. the bad was the forearm at over 3, hence the parathyroid tests. Z scores were not bad except for forearm. Since I cannot have surgery and cannot because of other problem take anything of the conventional drugs I think she is going to recommend the IV treatement every 3 months over at the hospital. that is where is stands now. Medicare will cover this treatment. Regarding the normal calcium. She said in secondary hyperparathyroid that this is not uncommon to have normal calcium in blood. She explained it more than that but said for primary it would be high but not necessairly for secondary.

Lucy4

08-03-2005, 11:04 PM

trackster - can you tell me who did you surgery?

trakster

08-04-2005, 10:19 PM

For Lucy4: See my post #36, it gives all the info.

Side note: For people interested, the New England Journal of Medicine has results of a 10-year study of patients with hyperparathyroid. In order to see the complete paper you need to sign up to their site. To find the paper, just do a search for "hyperparathyroid study".

Trakster

Lucy4

08-06-2005, 01:53 AM

I would love to know how your surgery went. I'm also considering traveling to Tampa for surgery. Thank you

trakster

08-08-2005, 06:42 AM

My surgery went very well. I had no complications from the surgery. The surgery was an outpatient basis so I was out by 3:00. Total time in the OR was ~1 hour. It took a couple days for the general anesthesia to wear off. My throat was rough for about a day so I talked with a gravelly voice.

Dee77

08-19-2005, 05:08 PM

parathyroid problems can be caused by renal disease??? :eek:

Dee77

08-19-2005, 05:10 PM

What arer symtoms of parathyroid problems

Canyondweller

08-19-2005, 06:59 PM

It is my understanding that the symptoms are non specific. Yes, it can cause kidney disease as the kidneys are working overtime eliminating calcium from the body. The reason it is diagnosed so seldom is because of the vague symptoms. For a list of symptoms check it out on google under hyperparathyroid. It seems to affect people differently. I am finally getting my results Monday and will post after that. Am keeping my fingers crossed that it is not since I could not handle the surgery.

Canyondweller

08-23-2005, 01:53 AM

All my tests came back negative for parathyroid disease. Now i have to decide if I want to try the once a month pill with my esophagous problems, the IV every 3 months or find out about the once a year IV. The other option is to be more vigilant about my calcium, Vit D and exercise and get Dexa scan again in a year. I just might opt for this. I did show that I was excreting a lot of calcium in the urine but it was still within range though tending toward high. I had a more than nomal amount of urine and wonder if that had something to do with it. I didn't notice that till she left the room so didn't get a chance to ask. Seems like it would make a difference. I can not afford the Forteo and she didn't seem to suggest that she try and get me on program. My income is slightly over the maximum allowed. Glad I showed normal on everything.

annieb214

08-23-2005, 03:19 PM

Hi CanyonDweller,

Do you know where your hyperparathyroid labs were sent? My endocrinologist sent mine to Mayo clinic, because so many labs around here (Texas) don't do hyperparathyroid on a regular basis and there is a high error rate. You might ask about this.

Annie

Canyondweller

08-23-2005, 04:42 PM

Annie, yes they were sent to Quest which was her lab of choice. She did not want me to go to the hospital lab. I also read an article that Quest was very accurate in this test as they were one of the pioneers. Mine was right down the middle so I doubt it would be off by that much. Good question though as this is something I would not have thought of but she did. She said the hospital was not consistent with their report on this.

skeetur

08-24-2005, 09:17 PM

Hey Trakster...

Can you tell me who your surgeon was? I'm here in NOVA.

Thanks,

Kathy

skeetur

08-24-2005, 09:34 PM

Hey!

I've had elevated calcium and PTH for a few years. Yes years. Apparently my endo (went to his for diabetes) knew about it but I ended up finding out in 2003 when my regular physician did some blood work and calcium was high (10 point something) so she tested PTH which was 95. She sent me for Dexascan which was fine and ultrasound would showed nothing.

Now we get to late 2004 and I want to have gastric bypass surgery and I tell him I have high calcium. He runs blood work and calcium is 10.3 and PTH is 60! Huh?

Then we get to April 2005 - my pre-op tests for my gastric bypass surgery and calcium is 11 and PTH is 122. They did do the surgery. About a month post-op my regular physician runs a blood test and calcium is 11 so the nurse calls me and tells me to cut my intake of calcium in half. What?!

So here I am in August 2005...down 76 lbs since mid-Feburary (pre-op diet before gastric bypass) and off diabetic meds and blood pressure meds and CPAP machine. But still have the pesky calcium and PTH issues. I saw a new endo (didn't care for the old one) and he is rerunning blood tests, 24 hour urine test and Dexascan. Had Dexascan today and they told me on the spot that my spine was exactly the same as 2 years ago but unfortunately my hip lost 4.1%. Ouch! She didn't tell me about the forearm - but I'll get a copy of the report sent to me at home shortly. I'm curious what it shows.

The fact that I'm a gastric bypass patient means that I don't absorb calcium the way I should so I'm very concerned about intake, calcium level and ways to prevent the parathyroid from leeching it out of my bones. The gal at the bone density center told me I have osteopenia now. Damn. I did read that weight bearing exercise and strength training can help osteopenia. I hope so.

I don't know if I had symptoms of parathyroid disease. Fogging brain - sure, sometimes. Tiredness - sure sometimes.

Kathy

Canyondweller

08-24-2005, 11:27 PM

Well, let us know how it comes out. My regular Dr. always says these tests are not finite which makes me wonder sometimes why I have so many. Seems to me some of these things can change almost daily. The one thing that they are stressing now is 800 of Vit D instead of the 400. Nothing was said to me about magnesium but she did say to take a multivitamin that I have been remiss in taking. In my case she said Centrum Silver.

The forearm is the reason they suspected the parathyroid but as it turns out it wasn't. My number was 55 as I remember but it did show I was losing a lot in my urine but then I really had a lot of urine so don't know how they measure that. Didn't get to ask it. I think my smoking was the real culprit because as bad as I am I was remiss in taking calcium and the osteoporosis is in forearm and spine. Osteopenia in neck and hip. My Z scores were not that bad, I didn't think. I am 68 and obviously am not going to have the bones of a 35 yr. Old. Keep us informed.

cathy leahey

09-19-2005, 07:50 PM

CrohnieToo

09-21-2005, 09:58 AM

Boy, you are kind of between a rock and a hard spot, aren't you? The "uncertain looks" would make me extremely nervous as well. Surgery is never anything fun to look forward to and what they take out they can't put back in. Are they talking removing the entire, all four, parathyroid glands or are they not certain just what they are going to do until they get in there? Do you have the option of going to a large teaching hospital with a really good Endocrinology department for a second or another opinion? Have you asked the surgeon how many of these parathyroid surgeries he has done and how many successful outcomes? Is the Endocrinologist the surgeon? I'm not sure if Endos do surgery or not. What type of surgeon DOES do this type of surgery? Do they feel that you have primary or secondary hyperparathyroidism?

I always stress over surgical decisions. I've had four surgeries and the first three I decided correctly and haven't regretted. This last one, cataract surgery, was a REAL mistake. I could have waited longer and should have, I had my choice of two surgeons and picked the wrong one.

Good luck and God bless in making your decision! (((hugs)))

asheryl

09-21-2005, 09:31 PM

I am schedule for surgery in Tampa with Dr. Norman . I would like to know anyone experience going down to tampa and having surgery done by Dr. Norman. What kind of experience did you have and what after effect did you have.

Hi Cathy
When are you scheduled for your surgery with Dr. Norman? Jayme emailed me Monday that Dr. Norman would be reviewing my chart today ! I am very hopeful I can have surgery with Dr. Norman.
I would love to hear from you.

Sheryl

meemaj

09-21-2005, 11:52 PM

Hi, Fellow pHPTH's! I'm a 62 year old woman and was diagnosed with Primary Hyperparathyroidism almost 1 year ago. I had 2 inconclusive Sestamibi scans and then came here to Yale for an ultrasound. The ultrasound identified which gland it was, which made me feel more comfortable in facing the surgery. I had the surgery yesterday to remove one bad gland and want to tell you all who are contemplating the surgery that it was not bad at all. I was VERY anxious beforehand and hope I can allay anyone's fears about the minimally invasive surgery. My PTH was 85 before the surgery and right after, it went down to 17. Pretty amazing! I've only had to take Extra-strength Tylenol for a bad headache. My neck is sore and swollen, but it is under control with the Tylenol. I came to New Haven, CT. (Yale) for the surgery and am staying here for my post-op visit on Friday. Surgery was Tuesday morning about 8:30 AM and I was back at the hotel by 11 AM. I slept off and on the rest of the day and this morning. This afternoon I was able to explore the town and eat lunch and dinner out! I am very pleased so far and happy to have this over with. Wishing you all the best. --meema j :wave: p

30yearold

09-23-2005, 01:10 PM

What a beautiful post. Best wishes to you and I'm happy to see your doing so well... :angel:

cathy leahey

09-23-2005, 10:21 PM

Hi Cathy
When are you scheduled for your surgery with Dr. Norman? Jayme emailed me Monday that Dr. Norman would be reviewing my chart today ! I am very hopeful I can have surgery with Dr. Norman.
I would love to hear from you.

Sheryl

Hi Sheryl,
I am scheduled for surgery next week on Thursday morning. I am very nervous since I have to fly to Florida for surgery. When I heard from Jayme it took about two weeks before Dr. Norman called me. I was to schedule surgery through Jayme. He informed me it would take about 4 to 6 weeks after that before I would have surgery. It was about a week before the schedule date before I heard from the hospital and the pre op nurse to make the arrangement of when I should be at the hospital. I must admit I have been reading far too much message boards=enough to make me a little nervous what to expect after the surgery. I am very confident I made the right choice. Are you flying to Florida also for surgery? cathy

asheryl

09-23-2005, 11:22 PM

Hi Sheryl,
I am scheduled for surgery next week on Thursday morning. I am very nervous since I have to fly to Florida for surgery. When I heard from Jayme it took about two weeks before Dr. Norman called me. I was to schedule surgery through Jayme. He informed me it would take about 4 to 6 weeks after that before I would have surgery. It was about a week before the schedule date before I heard from the hospital and the pre op nurse to make the arrangement of when I should be at the hospital. I must admit I have been reading far too much message boards=enough to make me a little nervous what to expect after the surgery. I am very confident I made the right choice. Are you flying to Florida also for surgery? cathy

Hi Cathy

Wow Not much longer until your surgery. I wish you well and will think good thoughts for you on that day. Yes, I have to fly in also. I live in Oregon so I probably will come in a day earlier than recommended. I am usually wiped out after a coast to coast flight. Where are you coming from? Can you tell me alittle about what brought you to Dr. Norman? I found his site on the internet through Google. What are your symptoms? I actually feel it is a blessing that hyperparathyroid is my dx. There is a remedy for it and I am hoping my symptoms will disappear after the surgery. I feel good about Dr. Norman after doing much research on him and his practice. I think we have hit the jackpot with finding him. I can't imagine having the "big" surgery.
Tell me how you knew the day and time Dr. Norman was going to call you? I can see myself sitting home everyday for 2 weeks waiting for his call. I didn't give my cell phone number as the service here is not great. I was concerned the cell phone would cut out on our conversation. So the office just has my home phone. I wonder if I should email Jayme my cell phone number. Does his office make an appt. for you to speak to him? See I am a worrier. Sorry . Which hotel are you planning to stay at in Tampa? I have been to Tampa once before but it has been awhile ago. By the way I am 61 years old. I hope my daughter will be able to travel with me. She is in college but I think she will go with me. I hope I won't have to travel alone.
Well enough of the questions. I am so happy to meet you. I hope to hear from you.

Sheryl

asheryl

09-23-2005, 11:33 PM

cathy leahey

09-24-2005, 02:10 PM

Hi Cathy

Wow Not much longer until your surgery. I wish you well and will think good thoughts for you on that day. Yes, I have to fly in also. I live in Oregon so I probably will come in a day earlier than recommended. I am usually wiped out after a coast to coast flight. Where are you coming from? Can you tell me alittle about what brought you to Dr. Norman? I found his site on the internet through Google. What are your symptoms? I actually feel it is a blessing that hyperparathyroid is my dx. There is a remedy for it and I am hoping my symptoms will disappear after the surgery. I feel good about Dr. Norman after doing much research on him and his practice. I think we have hit the jackpot with finding him. I can't imagine having the "big" surgery.
Tell me how you knew the day and time Dr. Norman was going to call you? I can see myself sitting home everyday for 2 weeks waiting for his call. I didn't give my cell phone number as the service here is not great. I was concerned the cell phone would cut out on our conversation. So the office just has my home phone. I wonder if I should email Jayme my cell phone number. Does his office make an appt. for you to speak to him? See I am a worrier. Sorry . Which hotel are you planning to stay at in Tampa? I have been to Tampa once before but it has been awhile ago. By the way I am 61 years old. I hope my daughter will be able to travel with me. She is in college but I think she will go with me. I hope I won't have to travel alone.
Well enough of the questions. I am so happy to meet you. I hope to hear from you.

Sheryl

***** Hi Sheryl,
I am almost 50, hard to write that since I don;t remember the years pasting that fast. I didn;t know I had this until one day they had a routine blood testing at work they offered everyone and I decided to have it done. It show up then. I had the feeling something was wrong because I started questioning why I was drinking so much day and night. My doctor took blood and tested again. I also had a bone density scan which came back I have osteoporosis in my back. I like you started alot of research on what caused high calcuim and found Dr. Norman site. I am very impressed with the detail of his site and feel very confident. I went to my endocine here in Columbus, Ohio. My throat scan came back negative and didn;t show the tumor in the parathryroid gland. My endocindost here told me he thought all 4 were effective since the scan didn;t show anything. He told me I couldn;t have the mininal invastive surgery and I would have to stay overnight. As you know from Dr. Norman site this is not true. I decided to go to Dr. Norman since he is an expert and only does this kind of surgery.
I didn;t know when Dr. Norman would call. The office didn;t tell me when to expect his call. I waited and waited by the phone. I don;t have a cell number. He acutally called me on a Saturday which surprise me and at that time gave me his cell number. Are conversation was short, but he told me what he thought of the scan (informed me it was garbage), and told me he thought only one was effect and told me he thought I had this for 3 to 5 years based on my osteoporosis. He informed me to call the office on Monday and schedule a date. I did but got voice message. She called me back i believe that day or the next to scehdule the date. It took about a week before the actually date of surgery before I heard from the hospital and Dr. Norman pre-op nurse. I am staying at the Hilton garden Inn. My uncle is coming with me. We decidied to stay there because they offer a discount rate of 89.oo a night and provide a shuttle. It is close to restaurants.
I am getting nervous about the surgery, I am worry more about after the surgery and what to expect when the calcuim level drops and the aftereffects. I have been reading too much like I said. How did you fine out you have it? I am amazed how busy Dr. Norman is. I never heard about it until now and amazed how many people have it. Cathy

warrenpoint

09-28-2005, 11:39 PM

Hi everyone. I am new to this board and absolutely delighted I found it. I have had PTH of 95 with normal calcium. Doctor put me on prescrip.Vit D but it was filled wrong by pharmacy. I was taking 150,000ius three times a day instead of 50,000ius three times a week. I am having all kinds of tests now. At the beginning of the year when I had high PTH I found Dr. Norman's webpage. I found it very easy to understand and I contacted him to find out what my problem was and he advised me within a couple of hours by e-mail the tests I needed to have. To cut a long story short I have no idea what my problem is now as a result of the overdose of vit.d. My 25 hydroxy D was 1000, but don't know what it is now. Waiting on results of all kinds of tests. Annoying to go through all this. I recently went to Dr. Norman's site and I was surprised to see he had the surgery live on video. You can go to his site and see it. I was very impressed and I think it will help some of you who are going to have this surgery. I may have to go there eventually and my gut tells me he is good but I have no other way of knowing but I wish you that are going to have this surgery good luck and speedy recovery.

Canyondweller

09-29-2005, 06:09 PM

what a difference in dosage? Hope you get it figured out soon. I have no idea what the much Vit D would do.

warrenpoint

09-29-2005, 06:43 PM

Thank you for replying to my post. I have had osteoporosis for about 5 years and have been trying to find out why!!! I drank all the milk, did all the sports and was slim. Anyway, I have been looking on the web and find that this amount of 150,000ius three times a day for two months (length of time I was on it) can cause some heart arrythmias, which I have been having. Will let you know what I find out in the coming weeks after tests. My doctor said that some researchers are interested in doing lab work to follow up. Will see what happens. Thanks again.

asheryl

10-01-2005, 07:40 PM

cathy leahey

10-01-2005, 07:54 PM

Hi , Sheryl,
I am online....lots to tell you!!! Do you want to talk through email?

cathy leahey

10-01-2005, 08:39 PM

Cathy

Is your surgery over ???? I am so waiting for you to tell us how things went for you in Tampa. I hope you are well on your way to recovery and will be able to post soon.

Take care
Sheryl
Sheryl

Hi Sherly,
A lot to tell you. I flew in to Tampa on Wednesday afternoon, which was a accomplish for me...I am a nervous reck about flying. We stayed at the Hilton Inn. which was a very nice hotel...but not much to offer in the way of restaurants. A couple of Itlian food places, a old downtown Yabor city sitting...surrounded by bars and dance places. The food was really good but not much to do their. Mostly a nite handout. The resaruant at the Hotel only had a breakfast buffett in the morning...which I thought was kinda of expensive. What will cost you the most is the expense of cabs. It cost about 25 from the airport to the hotel. The shuttle the hotel offered didn;t work out either. IT did not run until 7:00 am. and had a hour wait to pick you up after the surgery so it cost us cab fare to and from the hotel because we had to be at the hospital by 5:45 am. and we didn;t want to wait a hour to be picked up afterwards. Then you had the additional cost of cab to get you back to the hotel. I would say cabs ran cost to 75.oo.
I problaly would have paid the extra 10 more and stayed at the Courtyard where I belive they have a free breakfast bar. No sure of this though. Well so we had the cab drop us off early thursday morning. Make sure he drops you off at the McDonalds entry way ...our cab drop us off to one side entry not the correct one..you go up to the third floor. They will bring you in another room when they call you too sign more papers then you wait to be called in to the pre-op room. Sheryl make sure you have someone go with you. They can stay with you the whole time through pre-op and the scan and the talk with the Dr. Norman. Well I had to undress and then they put the IV in my hand ...did that hurt...whow...Then Dr. Norman comes over to talk with you. He is very professional and know what he is saying to you...you will understand when you meet him. They reel me in the get the scan. The scan takes about 15 minutes and when you leave the xray goes with you. You go back to the pre-op and Dr . Norman goes back to you. He guess which one has the tumor and he has you hold up the xray and show you which is really neat. Then he goes away and you have nurses at the end of your bed asking you questions and a very nice anthesia come to your side and tells you want is going to happen. They start wheeling you away and the next thing you know you are being awaken in recover. Your family member is there with you. yOu are given crackers and something to drink. You can;t have anything to drink or eat after midnight the nite before. Very nice nurses...you will like them. The nurse sends you go the bathroom to go and get dress. They will call a cab for you or you can wait until the shuttle if you stay at the Hilton.
***end of part 1

cathy leahey

10-01-2005, 09:10 PM

Hi Sherly,
Part 2....
Sherly let me say first you will be so pleased on your decision to go and get it the surgery done by Dr. Norman. The more I read about him and after meeting him I felt comforable about my decision that he was the right and only choice. My endocist here would have taken all 4 out and make a long incision. After your surgery you will want to go back and sleep for hours. If fact thats all I remember doing is sleeping alot. I had my surgery done at 7:30 and back to the hotel by 10:00. I sleep until around 4 and we walked a couple of blocks and had dinner. There was a couple of ice cream places. Believe me in telling you the ice cream hit the spot. They will give you also a ice bags for your neck. Sherly, the incision is 1 inch long only. Its very tiny with a little piece of white tape across it. It is puffy and swollen. My scan done in Tampa show 1 bad gland....on the right hand side. He guess which one it was and he was correct. All the sites I read say he calls you that nite to check on you...he didn;t for me....maybe because I don;t have a cell phone. He does give you his cell and home number when you goes over the scan with you. I asked him about the calcuim and problems afterwards and he stated I need to follow his directions which he goes over with you and he doesn;t have anyone with complications. He is a very confident doctor. After dinner the nite of the surgery all i did was sleep. The next morning we left early to go to the airport and get breakfast. Now the news on post -op.............Dr. Norman will give you a bottle of Caltrate Plus d .....he will instruct you on how much to take for the next month. I have to take 4 for one week, three for the second and third week , then 2 then on with a multi-vitamin for years because I have osteoporis . YOU will definitly have a sore throat, hard to swallow without it hurting...for a couple of days. The first day swallow was hard without hurting. Today has been better. The first day my voice was raspy but its better today. I bought some advil for the sore throat . I also bought some extra-strenght tums with calcuim. Someone on the internet suggested it due to low calcuim aftereffects. IT does help.
The calcuim pills by the way are like horse pills!!! In between the calcuim pills you will feel you feet and hands tingle and little twitching...due to you calcuim being low until the other glands wake up. I take my calcuim pills with -on schedule. This morning after a few hours of taking one I did feel the tingling sensations and I took a tums which resolve the tingling right away. Ice cream helps alot!!! making you feel better. Also, its strange Sherly, after surgery you actually feel better....like a fog has been lifted. Hard to describe. I am so glad we have the internet and I found the site of Dr. Norman. I did alot of researched glad I had the surgery. You will have to keep in touch and also let me know when your surgery happens ..do you have anymore questions? I am glad to give the info I was looking all over the internet for people who have posted to see what their experiences were like and what they went though. It was very difficult to fine without being very outdated. Did you heard from DR. Norman yet by phone? It does take away in between when the nurses turnover the records to him and the time he calls you. Cathy

asheryl

10-02-2005, 12:26 AM

Hi Cathy

I just got back online and read your report. YOU MADE MY DAY !!! Thank you so much for sharing with me your experience with the parathyroid surgery. I am so not afraid of doing it myself now. You are a God send. As much as I researched I was still a wee bit skeptcial that everything I had heard about Dr. Norman and the mini surgery could be true. Sorta too good to be true. But now with your report I can rest much easier .
I still haven't got the call from Dr. Norman. It has been 8 days since he was to review my chart. I am going stir crazy waiting for his call. I don't want to miss it and have to wait longer for the surgery. Not even a few days. I am thinking about emailing Jayme and asking her to give my cell phone number to the dr. I have a dentist appointment Tuesday morning and I bet he will chose then to try to call me. I am so up tight about missing his call. You said he called you on a Saturday. Do you remember what time of day he called?
You made me smile when you said the worse part of your experience was the flying. I am not a happy flyer either. My husband's family lives in FL so we go at least two times a year. That is one long flight from Oregon. Usually I try to get a one stop with the stop in Salt Lake City. They have a lovely airport and it is not huge like Atlanta. My 20 year old daughter can go with me so I won't go alone. I am glad you told me to bring someone. Good information about the taxi and the hotel. I was planning to use a taxi but didn't think it would be so expensive. No way do I want to wait an hour after surgery for a shuttle. I will just have to budget for it. I was thinking of staying at the Marriott. I really don't know yet.
I printed out your report and will refer to it. Good information about which entrance to have the taxi drop you at. I was looking at the Tampa General Hospital site yesterday and was wondering where the heck to go. I would have picked the main entrance valet parking entrance. I would have been wrong. The hospital looks huge. Did you have any idea with parathyroid of yours was bad? I think mine is one the right side. Can you imagine if you had all 4 of yours removed. I shutter to think what you would have to live with the rest of your life. Wow! your scar is only one inch long. Is the incision on the right side of your neck? Thinking it probably is . I liked what you said about the fog lifting. I think I know what you mean about being in a fog. Happens to me quite often.
Thanks again for the wonderful report. I hope I will be able to report on my surgery soon also. Bye for now

Your friend
Sheryl

cathy leahey

10-02-2005, 08:11 AM

Hi Sheryl,
I am so glad you read my note. After surgery I was looking for you to get online. I forget you are further away in Oregon about three hours behind us in time. I would give the office a call and tell them your cell number. Dr. Norman tried to call me first at home and I wasn;t home I was working. He did call me at work which was fine but it was hard to talk so are call was brief. I think you will feel better if you had your cell. It tood about 8 to 10 days for him to call. I bet he calls you this week. When he calls he will tell you what he thinks of your scan, information and tell you how long he thinks the surgery will last. I ended up with one bad parathyroid on the right hand side. I really thought at least two were bad. I was surprise it was only one. When I was wheeled out of xray scan I was peeking at the scan and I could see all these dark spots on the xray. I thought oh no. but everything lights up on it. When Dr. Norman look at the scan with me its inside those dark spots and you can see a round spot. The cut and incision Sherly, is in the middle of your lower throat. Its 1inch long. It looks kinda swollen for a day or two but once you can showder after 24 hours to 48 its starts to look better. Sherly, bring your daughter it will be really helpful to have someone near you for support and help you wake you up at the hotel for ice cream, cold drinks and most importantly to get your calcuim pills. After surgery they will make you take two calcuim right away. I know my uncle really help being with me...also a good cushion on the plane for sleeping and holding on for dear life. : >
We were disappointed about the shuttle not working out like the site mention. The taxi to the airport and back will depend on where you stay...Ours cost us about 25 to the hotel another 25 back to the airport and 10 back and forth to the hospital. Maybe your hotel will be better on the shuttle. I was surprise this hotel didn;t have a shuttle going to the airport and back. The last day we stay there the shuttle was in the front part of the hotel not being used. Make sure the taxi drops you off by MCDonalds entryway..out drop us off the on the wrong side and no one was around that early but we walk around and found it. It is a big hospital but if you go the McDonald side entry a guard is sitting there and he will tell where the elevators are and you go up to the third floor and you go right up the outpatient surgery area. Their is a coffee place near by for your daughter. Oh I forgot to tell you after the surgery Dr. Norman will come out and tell your daughter how you did and that you are cure and she can come in and see you. He was suppose to call you later that nite but like I said before I didn;t have a cell number and we went out for dinner after sleeping for a few hours. I probaly missed his call. Today being Sunday I am doing good...I am taking my calcuim pills, if I need to (tingle sensation) I take a tum in between. I still have a sore throat but I am taking advil and that helps alot. The first day your neck with be still but that went away.
Sherly, I can;t imagine the people who have had all parathryoids taken out. It must be really rough to recover your system to regulate calcuim levels. I have been reading alot on thyroids and the complications when they have to have their entire thyroid taken out. It seems a nightmare. I am glad my was only the parathryoid. I asked Dr. Norman if they was a change it coming back in the other glands and he said no. It was extremely rare. I am glad to hear that. Well let me know when you get his call. I am so preased to know the information is helping you feel better. I know Sherly I was looking all over for information on people experiences with Dr. Norman and the surgery and their isn;t much out there in regards to what people went through. Its good to know what to expect. I was hoping their was a live chat or discussion area on the topic. I thought I read their was one being worked on. Let me know how you progress and keep in touch.
Your friend Cathy (Ohio)

asheryl

10-03-2005, 10:53 PM

cathy leahey

10-04-2005, 06:25 PM

Hi Sheryl,
I am glad you heard from Dr. Norman but sorry you have to go back for more blood work. Did he want another calcuim check? At least he is very thorough. Hopefully he doesn;t make you wait another three weeks to 6 weeks. I would have the doctor rush the results or even fax the results to him. Is he going to call you again once he gets the results. I thought you would enjoy talking with him. He is the same way once he is next to you at the hospital. Very confident. That is good!!! Before showing me the xray he said he would guess before which one was infected and he was right!!! Let me know how everything processes.
Well, how am I doing. My surgery was Thursday. Sunday and Monday were problaly my worst days. I was kinda of scared I would end up in emergency getting a calcuim drip that I have heard people talking about on the internet. My muscles were twitching and I felt my bone trembling. The tingling in my feet and hands were minimily compared to the twitching!!! The doctor gives you a paper to follow and has you and your family read it in front of him and he goes over with you about how much calcuim to take after the surgery. If you remember on the site it tells you also. Well he changes the amount on the paper when he is talking with you. I followed the sheet and also bought some Tums to supplement. I heard from several people on the Internet it helps. Well Dr. Norman told me to take 4 a day. Well the Sunday and Monday were awlful. I was worried. I was taking the 4 day plus Tums and still doing this. So Monday I wrote Dr. Norman and he email me right back. I was afraid to call him even though I had his numbers. He is great....he email me right back and told me this was fine my bones were hungry for the calcuim and just to take more calcuim pills per day and then decrease the amount every day. I didn;t realize that you can take more and it would be okay from the instructions. His email was so nice Sherly. Well today I was ready to take more and I have actually went to work today and taken only what was on the sheet-4 today. The shaking and twitching has stop. I actually feel good like the remaining glands have kicked in. My sore throat still persist and my hand hurts like the devil where she put the IV, but I am doing alot better and feel actually near normal. Everyone is amazed how small the incision is. I will have to keep taking the calcuim for years to come since the Osteoporosis is bad in my spine because I had this tumor for 5 to 7 years. You will have to keep thinking how good you will be feeling down the road Sherly. I feel so much better now then I was. Everyday is a improvement , and I feel it had been the best decision I have ever made going down to Tampa and having surgery done by Dr. Norman. Sherly, when you had you scan in Oregon did it show anything? When I had mine done here in Ohio it didn;t show anything. The scan I had done in Tampa show up right away. I was amazed. And to think this surgeon here would have taken all 4 out. I was thinking of going back to my doctor in another week to get my blood work done again to check out the levels. Well Sherly , let me know how you are doing.
Your friend, cathy

meemaj

10-10-2005, 01:56 PM

Hi, Everyone. Tomorrow will be 3 weeks post-surgery for me. I wonder if those of you who have had surgery to remove a parathyroid gland can tell me if the way I'm feeling is par for the course or not. I've been taking 3 Extra-Strength Tums a day and no other calcium supplements. I haven't had any of the tingling that indicates I'm low on calcium. I'm not feeling much different than before surgery. I still feel tired and sluggish. I am finding it harder to get up to the speed I was doing on my treadmill before my surgery. I was hoping I would feel more energetic after the surgery. Also, I still get up several times at night to pee and don't feel like I sleep soundly.

Am I expecting too much too soon? I would really appreciate hearing from those of you who have already had the surgery about your post-surgery recovery, how long it is since your surgery and how you feel now. I've re-read through the postings and don't see too much about post-surgery experiences. I'm so glad this board is available for us to help each other!--meema j

Canyondweller

10-10-2005, 06:26 PM

I admit I dont know anything much about the surgery except what I have read here but since extra-strength Tums are not considered enough calcium for the average person I would question that is is adequate. I am just a normal person but I was told to take Calcium with D as it is not absorbed well otherwise. On the above post the tums were in addition to other calcium. I was told by endocrinologist to take 2 600 tablets plus D and a Multivitamin that had 400 D and 200 calcium. I took Tums all my life because I was told it was sufficient calcium. Well, it sure didn't work for me.

cathy leahey

10-10-2005, 08:25 PM

cathy leahey

10-10-2005, 08:35 PM

Hi Meemaj,
I am a little behind you in surgery. I am post surgery 2 weeks on Thursday. I feel pretty good. I am surprise you are taking only tums. My doctor had me take 4 calcuim (600) each for one week, then 3 calcuim each for the second week, then 2 a day for years because of my Osteoporosis as a result of my parthyroid. I was taking tums with my calcuim pills the first week. They helped with the edge when my fingers and toes tingling the first week and my muscles twitched. I have had lightheadness and nausea the last few days and am not sure if its the result of surgery or what. I agree with you I haven;t regain the strength or the feeling of energy yet that I thought I would get back after surgery. I also still am getting up at night and waking up in the night and for the most part don;t feel great yet. I don;t know what I was expecting. My incision is healing great but is getting ichy and had a hard ridge to it. How is your incision coming along.

meemaj

10-11-2005, 02:07 AM

Hi, Cathy.
I'm glad to hear from you and compare notes! I've been waiting to hear from my endocrinologist as to what kind and how much calcium to take, so am doing the Tums in the meantime, as my surgeon recommended. I also stopped taking my Actonel (like Fosamax) per my surgeon's nurse and want to get confirmation that I should stop from the endocrinologist. He hasn't called back yet (actually his receptionist did, but I didn't hear my cell phone!). Before I knew I had hPTH, I used to take 1200 mg calcium and 800 units of Vit D. Then pre-surgery the endocrinologist limited me to total daily calcium intake, including food, of 800 to 1100 mg. It does make sense to take what normal people take, I think, post-surgery. Hopefully, now we are normal!

I haven't had any nausea, tingling or lightheadedness, so am thinking I'm okay with the calcium amount. I had the Minimally Invasive surgery and one gland removed. Did you have the Minimally Invasive? How many glands? My scar is about 1.5" and is healing beautifully. At first there was a lot of swelling and sort of a swollen pouch around the scar with a little 'shelf' above it (same as your ridge I guess). Now it is no longer swollen but I can feel the hard ridge as you said. I can't even see any stitches. Never could! I wonder if the surgeon glued it together! (only kidding) Truly, I can't imagine how he closed it up without any stitches showing, though he did say there are layers inside and those will dissolve. All you would notice is a purplish line that looks like I didn't wash my neck, like a little kid. It is sort of numb when I touch it, but fortunately doesn't itch. It did for awhile, but not that much. I put sunscreen on it religiously, even on a cloudy day.

I hope you feel better each day (me too) and look forward to hearing how you are doing.

CanyonDweller, thanks for your reply too! I hope you are doing well.--meema j

asheryl

10-11-2005, 11:27 PM

Hi Cathy

I got my second blood draw today and only have one more on next Tuesday. Then the results have to go to my doctor and then the doctor will fax them to Dr. Norman. Then Dr. Norman will give me a call. Dr. Norman wasn't satisified with the calcium results. My PTH was 87.5 but my calcium fell into the high (very high) normal. And my doctor didn't do any ionized calcium tests. So I am getting serum calcium, ionized calcium and PTH. Feels like I am spinning my wheels. IF I do need the surgery I am hoping to get it done before the end of the year. I have paid all my deductble for this year and if I have to wait till next year I will have to shell out for the deductible all at once. With five of my children attending college I really have to watch my bottom line. Cathy or Meemaj what were your calcium levels? We live in such a small community I hope the lab techs know what they are doing. Today the supervisor had to tell the tech to be sure to use a seperate vial for the ionized calcium test. Made me wonder if this gal got it right last week. Were either of you required to fast before your blood work? Dr. Norman said no calcium supplements or multi-vitiamins.
Cathy how are you feeling now. I hope you aren't disappointed with your progress. I am sorry you are not sleeping well. I know how bad that can be. Let me know how you are doing. You too Meemaj (I am typing Meemaj from memory, I hope I remembered correctly)
Well, I will continue to watch how you are doing. Cathy you have made it so much easier for me already. I know to go in the McDonald entrance of Tampa General Hospital. Now I won't get lost. LOL I shouldn't have said that.

Bye for now
Your friend
Sheryl

cathy leahey

10-13-2005, 08:31 PM

cathy leahey

10-13-2005, 08:41 PM

Hi asheryl,
I had not seen you post in a bit, I was getting worried. Well its been two weeks since surgery. I am feeling really good. You would not believe the incision Asherly. It's ALMOST GONE. The incision looks bad at first but it's really the dried blood against the small little tape covering it. Once you are allow to take a showder its looks good. I am kinda feeling the inside muscles healing especially since I sleep on my stomach and stretch my neck. I am down to taking 2 calcuim pills a day now. I feel sometimes tingling during the day but now I am not worried about it. I went to my regular doctor the end of last week and she took a blood calcuim test and my levels are bad to normal. I did not have to fast at all either time before or after the surgery. I think my calcuim level was in the 11 range. I don;t know what my parathyroid level was. I never found out. I am kinda of curious now. Did Dr. Norman tell you he would get back to you quickly once he gets the results from the new blood test. Did you say your calcuim is high normal? I will be interested to know how your blood test turn out. I hope also you get it done and finsished by the end of the year. You wouldn;t believe the difference you will feel at this time. You will feel like your old self. You wouldn;t be so tirer and in my case so cranky and down. I will be so interested in your experience when you meet Dr. Norman and get your surgery done. It goes so quickly.
Your freind cathy

wsc4049

10-26-2005, 10:07 PM

I read the posts here and found out I have almost the similiar symptoms.
But all doctors(oncologist, rheumatologist, neurologist, cardiologist, chiropractor, endocrinoloist) I've seen still have no clue on the treatment. So I'm still in the dark. :(
I'm male, in the early 40s. For over a year I have joint pain from shoulders to feet, whole body muscle weakness, rib cage and check pain, hard to walk, hard to bent down, hard to squat and stand up, hard to step up or down; after stand for a minute then hard and painful to move or twist ankle.
DEXA scan shows that my lumber spine T score -5.3, a severe osteoprosis.
One doctor said I may also have osteomalacia that causes pains. Started vitamin D and calcium treatment and also taking Fosamax three months ago. however still no improvement, feeling worse.
PTH is high at 165 but calcium is 9.2, lower end in normal range.
Most likely secondary hyper parathyroidism.
I did PET, MRI, CT and bone scans and they all show normal, only few fractures in ribs. Parathyroid scan also normal, Looks like my body just can't absorb calcium even I'm taking 2400 mg per day. Since PTH is high so the calcium is still being taken out from my bone!!! Anyone can shot a light on what I need to check next?

warrenpoint

10-28-2005, 10:43 PM

Try looking up www.parathyroid.com and you should find some info. there. It sounds like you may have a parathyroid problem. I too, am working on tests etc and been overdosed by pharmacy mistake on vit. d. I think the site above should help you some. Good luck.

linda.b

10-31-2005, 05:46 AM

I was intrigued to find this huge response to my original topic from 2001!!

I want to let you all know that I have made an amazing recovery. In particular over the last year !!
I had many bad symptoms, progression of disease, a late diagnosis, before parathyroidectomy (PTX), plus post op set back due to inappropriate bisphosphonate therapy, (I now believe this could have caused 2ndary HPT by raised pth levels which exacerbated my existing unresolved symptoms of pHPT).
Despite this I have regained my former strength, mobility, and sanity etc. etc.!! My body doesn’t hurt anymore!! My energy levels and my ‘joy’ have returned! Every symptom has resolved. Even more amazing I am still improving in every way as every day goes by!!
I am 59 now and feel so much better than 10, even 20 years ago.
As for ‘silent’ symptoms----
Good news is I have gained a long awaited 20% BMD in my spine over last 3 years. This is still in the osteoporosis range and not good. However I hope for more now that my mobility has improved. It is at least going in the right direction considering age and gender!! I understand gains can continue for 10 years post PTX. Those with the worst BMD’s theoretically gain the most.
I have taken HRT for last 3 years and eat a healthy diet with small calcium and vit D supplement.
Most osteoporosis therapies can only claim modest gains –about 10% BMD after several years treatment.

I live in, and was treated in the UK by the way.
I had traditional surgery with left side exploration, parathyroidectomy, and left lobe thyroidectomy 5 years ago.
A large adenoma and a thyroid nodule successfully removed and correctly located previously by Sestamibi and ultrasound. No post op problems other than strange voice for 6 months.
Time for recovery, since PTX, has taken far longer than I ever expected. During that time I have done lots of research into hyperparathyroid disease to stay sane! Finding Dr. Norman’s site was a revelation too. It provided many answers I had failed to get elsewhere, and confirmed my doubts about treatment of pHPT by Drs. unfamiliar with the disease.
I really want to say that you must be very patient about recovery. Also you must be vigilant about getting good treatment and advice. Many doctors and consultants are unfamiliar with this disease and its many and varied symptoms.
Do not be tempted to ask too much, too soon, of yourselves, after PTX. This can be a big mistake when raised calcium and parathyroid hormone have compromised the function of many different systems and tissues. I learned this after repeated set backs from being impatient and trying too hard, especially with weakened muscles.
I think recovery time may be related to factors such as type and duration of disease, severity and range of symptoms, care and expertise of surgeon, post op advice, general health, and so on.

In my experience some symptoms resolved within months, others, such as neuromuscular weakness, flexor tenosynovitis in my hands, and other resultant joint problems, especially in ankles, took several years.
Please don’t give up. Don’t forget in the early days your brain may still be compromised. I found I needed constant encouragement to put recovery into perspective. It was a very difficult time after such high expectations of PTX.
The difficulty is---after successful PTX, blood calcium and PTH returns to normal rapidly, but it takes far longer for the rest of the body to repair the damage caused by possibly years of exposure to abnormal levels of these two substances. Therein may lie the answer to the variability of recovery, who knows how long the disease has been present!

I will post later more thoughts which might answer questions on this topic.
Just wanted to post this message now!
To say I know what pHPT is like and I am thinking of you all. Wish you luck. Hoping you will begin to feel better and better post op and soon. Keep us posted.
Be patient but not complacent !!
Linda.

wsc4049

10-31-2005, 09:14 PM

Finally I have seen a new endocrinology doctor last Friday. He suspected that I have a rare Vitamin-D resistant osteomalacia withlow phosphorus level and it trigers the PTH high. I was drawed 11 tubes of blood for more tests. Hopeful he can find the real cause. Will post more when I get the results.

warrenpoint

11-02-2005, 10:44 PM

LindaB

I found your post very interesting. I am from N. Ireland living in Texas and have had osteoporosis for about 5 or 6 years. I had a blood test Jan 05 and my PTH was 95 which is supposed to be high. Anyway, to cut a long story short, my Doctor put me on Vit.D as she did not think it was my para. and I was overdosed by pharmacy error. I still think I have a parathyroid problem but I am not the doctor. I will continue all avenues to see why I have felt so old in the past couple of years. I am 58 and feel much older physically. Ihave always been active and not too overweight, 148 lbs. Your post was good and thanks for the info for us members.

linda.b

11-03-2005, 11:11 AM

Hi wsc4049,
So glad to hear that your new endo has a possible answer to your symptoms of metabolic bone disease.
Your difficulty with moving, strength, seizing up after activity, or just standing are just like those problems I had with primary hyperparathyroid disease (pHPT). I feel for you, it makes everyday tasks an ordeal.
My thoughts from info I’ve seen over last 5 years! --- in case you don’t get an answer---

Like warrenpoint your calcium is normal and pth is raised, and you have many hyperparathyroid-like symptoms.

Have you any previous blood results for ca and pth and over what timescale?
I think it is possible for Calcium an pth levels to fluctuate in and out of normal in early pHPT.
Sometimes those with only slightly raised calcium levels have the worst symptoms. This may be due to rapid rises in Ca as it fluctuates.

Bisphosphonates, like fosamax, can lower blood calcium levels. This may cause parathyroid hormone levels to rise. I think this could technically be described as secondary HPT. It is thought this may be the reason why fosamax continues to increase BMD after several years !!
My feeling is that this rise in pth could exacerbate symptoms of pHPT.
Bisphosphonates are used to lower calcium levels in parathyroid crisis. I don’t know how much lower—back into normal range ??
Fosamax will not help bones, if you have pHPT, until you have the overactive gland removed.

Normally the 4 parathyroids lie behind the thyroid gland but sometimes they can be found in the chest area. Also there are sometimes more than 4 parathyroid glands per person!!
I am not sure if a regular sestamibi would locate an overactive gland in the chest.
Some people on this site have had negative tests and then were found to have an overactive gland when retested properly elsewhere.
I would hope that your consultants have already considered these possibilities.

I do not know how your high calcium and vit-D supplements might influence the above other than to facilitate absorption of Ca.
But adequate dietary calcium is required in pHPT to minimise bone loss.
As you say calcium absorption may be the problem. If your parathyroids are normal this could lead to secondary HPT.
Some causes of secondary HPT are kidney failure, sprue, Vitamin D and calcium deficiency.

pHPT patients often have low phosphate levels.
Raised parathyroid hormone levels make the kidneys retain calcium and excrete phosphate.
I reckon the bottom line is, bone metabolism is extremely complex and you need a real expert to unravel the information!!
Keep us posted on your results and info. All good wishes,
Linda.

Sites to find info on primary and secondary HPT—
Endocrine surgeon.co.uk
Parathyroid.com

linda.b

11-05-2005, 12:07 PM

Hi,
Warrenpoint, glad my post was of interest to you.
I have become a parathyroid bore after 5 years of desperately trying to find information in order to maximise my chances of recovery from pHPT!!!
I had until my late 40’s been healthy. Rarely saw a doc.
I know what you mean by ageing.
Like you I was always an active quick mover, ate healthily, not overweight, no smoking drinking, etc. Just before the menopause I began to lose my energy, slow down, and could only achieve a fraction of my former output before fatigue set in. My friends of same age had no such problems. Dr. could only suggest menopause as culprit. No tests done.
Over next few years many symptoms developed. I can see everything more clearly on looking back !!
I was eventually referred to a rheumatologist when joint problems began. --- I began to think I was going mad, when I was told all the many monthly tests were normal.
By now I felt like a poorly 90 year old. I really couldn’t understand what was happening to my body.
Then, after 4 visits, I got the diagnosis! At last. What a relief. I looked up pHPT. There amazingly were all my symptoms listed. An explanation for my premature decline into old age!! And I wasn’t mad after all—symptoms were all the result of too much parathyroid hormone and calcium !!!

I have since read that, although simultaneously raised parathyroid hormone and calcium levels are diagnostic for pHPT, calcium levels may fluctuate in and out of normal in the early stages of pHPT.
I understand that my serum calcium levels did this prior to diagnosis!!
This seems strange as I would consider my 5 years of symptoms as more than early stages. Also the ‘huge’ adenoma removed at my PTX would indicate the probable presence of disease for a long time.
I wonder if a normal calcium with raised PTH, could look like secondary HPT, when in fact it was fluctuating primary HPT, and could even be of long duration, like mine???
A normal calcium result without a pth test would just look normal!
On hindsight I wonder why did it take so long for my test results to show HPT?
Were they not doing relevant blood tests, or enough repeats?? Were they not interpreting these test results correctly?
I don’t know at what stage the first parathyroid hormone test was done.

After a successful PTX I certainly lost confidence in my local docs’ (changed since ) and rheumatologists’ (parathyroid expert seen since) , especially as my own knowledge of pHPT increased! In hindsight, I now believe progression of my disease should have been prevented by more careful assessment, and by earlier referral, possibly to an endocrinologist, and so diagnosis.
I became very angry about my inadequate care when recovery took so long after PTX. .
Fortunately I am now really well again, so anger has abated.

So my advice is to follow your instincts. Only you know how you feel.
Try to work things out logically as best you can. Get all test results. This is all difficult when you feel bad.
I see that you contacted Dr. Norman. He seems to be a real expert on HPT and related problems.
Have you had more blood tests since Jan ?
Have your Vit -D status and overdose effects been monitored?
My previous post may be of help?
Are you seeing a good endocrinologist?
I hope this may have helped and that you find some answers to your raised pth levels and osteoporosis soon.
Please keep us posted.
Linda.

warrenpoint

11-05-2005, 11:23 PM

Yes your posts are helpful to people like me out here trying to work out medical stuff going on with us. The doctors don't seem to have the time to work everything out.
I have had several blood tests done since Jan. and for some reason my doctor put me on the Vit.D prescription, I suppose to lower my PTH. I had a regular colonoscopy test in May after being on the vit.d for a couple of weeks. I found out I had a ulcer, diverticulosis and acid reflux. So my test for the vit.d outcome came up with an overdose of vit.D. I had felt all kinds of things but just overlooked them thinking I am a HYPOCHONDRIAC! I think I have all the symptoms of PTH problem but my gynae says No. This vit. d overdose has taken on a life of its own. I am now preoccupied with getting blood tests done every 6 weeks to see how my 25 Hydroxyvitamin D is doing. The first test came back with 1000 and now it is 100 and I think from what I can find out on the internet, it should be no higher than 64 or so. I am on a low calcium diet and I hate it as I love milk.
The insurance co. of the pharmacy has said they would pay my medical bills. I hope they do as they are mounting up and I don't like owing money. I think the total about now is $16000 and mounting. Will keep you posted on any further outcome. I will keep reading these posts as they have helped me so much. I think like you thought in the beginning of your problem that ,I too, am at the beginning of my PTH problem but I could be wrong. Wished I felt better.

JROTC

11-22-2005, 09:31 PM

JROTC

11-22-2005, 09:36 PM

Visit Dr. Norman's web site at the University of South Florida. He does the MIRP surgery for hyperparathyroidism, there is even a video of the procedure. Aloha, Bob

meemaj

11-28-2005, 02:05 PM

Hi, JROTC.
I have two questions for you: 1) Where are you being sent for the surgery? and 2) Was your ultrasound done by someone who specializes in Hyperparathyroidism? If not, you might want to try again with someone else. Please let us know how you are doing!

I am a little more than 2 months post-surgery. I had the lower right parathyroid gland removed using Minimally Invasive Surgery. The scar is about 1.5" long and looks fabulous. The surgeon was Dr. Robert Udelsman at Yale University Hospital in New Haven, CT. The Best Doctor's issue of New York Magazine rated him one of the 2 best parathyroid surgeons in the U.S. (the other one is in San Francisco, CA) Prior to surgery I had 2 Sestamibi scans that did not locate the adenoma. As Linda B. said, my blood calcium levels fluctuated a lot over the last 10 years. My endocrinologist said this fluctuation was unusual but he still was sure I had Primary Hyperparathyroidism and needed the surgery. When diagnosed about a year ago, my PTH levels and urine calcium levels were high. I had a lot of aches and pains and fatigue and Osteopeonia (borderline Osteoporosis). In 1999, I had a kidney stone. I am 63 years old. My blood calcium levels varied from a low of 9.4 to a high of 10.8. Even without being able to locate which gland was the problem, I was scheduled for the Minimally Invasive Surgery at Yale for September (2005), with a possible conversion to the more extensive neck exploration. I had been told that an ultrasound might be able identify the bad gland(s) but that the chances were only 50%. I wasn't going to do the ultrasound, as my surgeon said it wasn't necessary to identify the gland in advance. A really expert parathyroid surgeon doesn't need it and can still use the minimally invasive procedure. In August, I decided I wanted to try the ultrasound, as I knew I would be less anxious about the surgery if the gland were identified prior to surgery. Dr. Hammer at Yale is an expert in using ultrasound to identify the parathyroid adenoma, so I made a trip to New Haven for the ultrasound and in about 15 minutes, they found the gland that the 2 Sestamibi's couldn't find. Within 15 minutes after the surgery, my blood calcium level and my parathyroid hormone levels went down to normal, for the first time in at least 10 years. Pretty amazing! The surgery took about a half hour. Recovery was very easy, with almost no pain. At this point, I really don't feel any different than before the surgery, except that my most recent CA level was 8.9 and my PTH level was normal too. I was reassured by Linda B's post that recovery isn't instantaneous and that I still can feel better.

I would urge anyone with this problem to seek out a VERY experienced endocrinologist and surgeon who SPECIALIZE in parathyroid problems, even if you have to travel a far distance to see them. I hope this summary of my past posts is helpful and encouraging. I know this Healthboards group has been and continues to be immeasurably reassuring, informative and helpful to me. I want to thank everyone who has shared their experiences and support. Keep on writing! --meema j

shaunlee

12-08-2005, 08:04 PM

I'm a 31 year old female and was just diagnosed with osteoporosis and hyperparathyroid disease. Can you imagine the shock? I am seriously considering flying to Tampa, FL to have Dr. James Norman perform Minimally Invasive Radioguided Parathyroidectomy. However, I have some concerns about this procedure being "too good to be true." I read earlier where some else shared these same concerns, so I am needing any advice from anyone who's had this surgery by Dr. Norman. I logged onto his website to get detailed information and noticed patients had to fill out an online form and his office staff would reply within 24-48 hours. How was the wait time and would anyone recommend him?

Thanks for your assistance,
Shaun

cathy leahey

12-10-2005, 07:13 AM

Shaun,
I had surgery done by Dr. Norman Late September. If you look back on this thread from page 10 until this page you will see my extensive conversation about my experience with Dr. Norman or do a search by his name. I flew down in September. Everything you read on him is true. He does a fanastic job. My scar is 1 inch. The procedure last 20 minutes. It was the best decision I ever made to have him do it. Read my detail report it will tell you alot of details on time table and such. cathy l.

linda.b

12-10-2005, 03:25 PM

re spitvit post no. 4.
I wonder should 10 inches really be 10 centimetres ( = 4 inches) ??
The incision for traditional parathyroidectomy is usually about 4 inches.
Interestingly calcium levels are normal but with raised pth and possible symptoms of hyperparathyroid disease present. Any news of outcome from spitvit?
Several on this site diagnosed with pHPT have had calcium levels fluctuating in and out of normal prior to surgery.

Craigux

01-13-2006, 09:45 PM

Hello, I am 33 yrs old and live in Jamaica in the Caribbean. I was diagnosed with hyperparathyroidism in 1995. I had 3 of my parathyroids removed, but, 10 years later i still have symptoms. I'm interested in going to Dr. Norman. I have not seen on his site any indication of how much this surgery cost. Can anyone advise me on this? Thanks in advance.

Craig

william.fleitz

01-15-2006, 09:18 PM

Hello Everyone--I just discovered the board. I just had surgery with Dr. Norman on November 22, 2005. It was a great experience and I am happy that I chose Dr. Norman. My question is to the others who have also had the surgery. How have you improved since surgery? I estimate I had hyperparathyroidism for about 3 years based on my blood tests. I had slightly high calcium in '02 but my doctor did not see fit to be concerned. It wasn't until last April when I had another blood test that another doctor alerted me to the high calcium. I went to an endocrinologist and then finally Dr. Norman.

The major problem I had during the years I had hyperparathyroidism was severe gastritis. Last year before surgery I had an endoscopy and was diagnosed with erosive gastritis. This has improved somewhat but still I have bouts of severe pain. The pain radiates from my upper chest and always makes me afraid of heart problems (I also have a bicuspid aortic valve).

Nonetheless, I feel that I am improving. Another concern I have is that I have read taking excessive calcium is not heart healthy--that magnesium is better. Does anyone have an opinion? I have been taking the Citrical as recommended by Dr. Norman but I feel like I am more restless now and that maybe I need to supplement with magnesium.

It would be great to hear about other "after surgery" recovery experiences.

tgs

01-24-2006, 08:51 PM

Bernadette12

01-25-2006, 01:40 AM

Tinnitus is a side effect of many antidepressants. Do you happen to be on one?

tgs

01-25-2006, 10:35 AM

No, but seriously considering if this Tinnitus doesn't settle down ;)

peregrine

01-25-2006, 11:33 AM

Another concern I have is that I have read taking excessive calcium is not heart healthy--that magnesium is better. Does anyone have an opinion? I have been taking the Citrical as recommended by Dr. Norman but I feel like I am more restless now and that maybe I need to supplement with magnesium.

Excessive calcium intake can also contribute to bone loss. The Eastern idea of balance makes the best sense to me. Ezorb is a calcium supplement that doesn't require magnesium for absorption; however, I still take magnesium. If your supplement doesn't contain it, I would supplement. I take a product called Natural Calm, which is a powder and allows you to regulate to the needs of your body. You start with a small amount and increase each day until you get loose stools. At that point you would then back up to your previous dose as that is all your body needs.

trakster

01-26-2006, 07:46 PM

Hello all,

I'm a 43yr old male and have been recently diagnosed (not sure how they missed this for soooo long) with HPTD after suffering ~10 kidney stones over the last 8 years and nausia, mood and 'just don't feel right' issues for a very long time. My calcium is usually >11.5 and my pht >100. I'm still looking for a good surgeon, but hopefully can get something scheduled soon.

Question is- has anyone heard of a link between tinnitus (high pitch/ringing in ears) and high calcium or pht levels? Is this just hopeful thinking that my HPTD could be the culprit???

Thanks!

My symptons is similar to yours except for the tinnitus but I get back to that later. Of all the symptons caused by HPT, dizziness was the worse just because it was constant throughout the day. I say dizziness but it was, according to my ENT, giddiness. Giddiness is a swirling motion in the head. Since my first prevelent sympton was being dizzy I went through countless MRIs, CT scans, and blood tests. Besides seeing an ENT I also went to a neurologist. My sympton started in April of 2004. By November I still was clueless to the cause. Then finally the doctor noticed I had a high calcium count of 10.6. She didn't seem to concerned about it so I wasn't either. By January she had me do another blood test and now my calcium was 10.8. With that I had a PTH test and that came back ~120. By the time I had my surgery in April my calcium level was 11.8 and my PTH was 130. The surgery went great. Great doctor. Now 9 months later my giddiness feeling is about half it was before the surgery. I have found some interesting articles concerning dizziness that mentions "calcium" deposits of the inner ear. If you do a Goggle search for "Epley calcium otolith" and select the first hit. There is a link on the page that discusses other possible symptons. On that page tinnitus is mentioned. So there might be a correlation between HPT and tinnitus. On another matter. have you had a DEXA scan to see how damage your bones are? Prior to my surgery I had osteoporosis in my forearm and osteopenia for my spine and hip. If your bones are bad your doctor might prescribe Fosamax to help rebuild any bone loss you may have.

tgs

01-27-2006, 01:31 PM

Thanks Trakster! Very interesting search results and it does give me hope that my Tinnitus could be related to calcium, but guess I can only wait and see.

How have your symptoms responded to your surgery- if you don't mind me asking? Did you really feel different overall?

Thanks,
Tom

nr2go

01-27-2006, 03:42 PM

trakster

01-27-2006, 05:40 PM

TGS: I didn't feel different right away. Some of the good things. My joints (knees, shoulders, etc) don't hurt as much as before the surgery. I had severe pain in my left elbow even weeks after I quit lifting weights prior to the surgery. If you read my previoius posts I talked a little about that. My muscles don't ache when lifting. Before, my muscles would fatique and hurt rather quickly during my workout. Now they don't. My mood has improved alot. Before my wife said I was much moodier. The only thing that is still bothering me is my giddiniss but I rate it half as bad as it was prior. I think it will take a little (or a lot) longer to get back to normal. My big test will be in March when I go in for my DEXA scan. I'm hoping for a great improvement. Let me know how you do. Same for nr2go. I would be very interested if you have improvement on the tinnitus after your surgery.

tgs

02-09-2006, 03:16 PM

Hello nr2go,

I have my surgery scheduled for tommorrow, I will surely let you know if it makes any difference with this tinnitus. Good luck!

-T

nr2go

02-09-2006, 03:56 PM

tgs, I am certainly anxious to find out if the tinnitus you've been experiencing is related to the hyperparathyroidism. It's been driving just as crazy as it has been for you. I have a long list of problems that I think may be related to it, some of which are known to be related to it others I suspect are. My surgeon told me that I have had it for a long time. I can't wait to get the little bugger out!

Good Luck tomorrow!!

tgs

02-16-2006, 09:14 PM

Hello,

Well sad to report that after 6 days from the removal of a very large parathyroid adenoma, my tinnitus persists. I am however feeling a bit better otherwise and my calcium has returned to a safe 8.2.

My tinnitus was actually much worse for the first day or so, doc says probably due to fluid in my eustachian tubes which increased sinus and ear pressures. Seems to be toning down now though so who knows there may still be hope. I'll let you know if there is any change.

-T

nr2go

02-17-2006, 02:16 PM

Hi TGS,

Glad to hear you're on the road to recovery. I was begining to wonder how you were doing. Hopefully, the tinnitus will eventually fade away completely.

So how did your surgery go?

I've been doing a more reasearch and found that the tinnitus is one of the symptoms of hypothyroidism...another one of my problems along with Hashimoto's disease. Hard trying to figure out what symptoms are possibly due to what. Some of them are symptoms of hyperparathyroidism, hypothyroidism, or Hashimoto's disease.

trteva

02-22-2006, 02:13 PM

How have you been cathyleahey since post surgery.. we have not seen you around and was there a follow up with sheryl? Shaunlee have you decided on where your going to have your procdure done?

cathy leahey

02-23-2006, 07:50 PM

Hi back...My post surgery has been going well. My scar is looking better every week that goes by. I don;t feel any effects from the surgery. I still do drink alot of liquids which before the surgery I thought the calcuim that was causing this. I am taking several calcuim supplements a day and will be for a long time to recover from the Osteoporosis damage. I have not heard from Sheryl. The last time she wrote she was getting additional testing that Dr. Norman wanted her to take before surgery but I havent; heard any results if she had the surgery or not. :)

trteva

02-24-2006, 03:33 PM

hi cathy, it is very kind of you to check back the boards to see how others are doing even after your surgery/cure...we sure appreciate it!! I noticed you were from ohio, how were you able to get insurance coverage for the surgery in florida assuming if you had HMO insurance where hmo requires everyone to be seen in their own network. btw I wonder what happened to sheryl? ShaunLee is from california too so i was hoping to see what she found out from her searches too. similar to her I was diagnosed at an early age (33 for me). have a nice weekend everybody!!

nr2go

03-09-2006, 01:40 PM

Hi TGS,

Just thought I'd let you know that my surgery was on March 2nd, but haven't seen improvement with the tinnitus yet. Still hopeful though. I have seen improvements with some of my other issues.

I am glad I made the decision to see Dr. Norman in Florida. The adenoma was not located where my local Endo thought it was. The sestimibi scan done here was negative so my local Endo sent me to have a sonogram done which did show a nodule, but as it turned out that wasn't the adenoma. I shutter to think how the surgery may have gone had I had it done locally based on the sonogram. In my mind it would have been more of seek and find procedure, because once they discovered that the nodule was not the adenoma they would have had to search for it via visual inspection.

swampmomster

04-15-2006, 12:07 AM

Hi all -

I'm a 51 year old female living (and rebuilding still) in Louisiana. Was dx'd w/hyperparathyroidsm 10 years ago after someone finally thought to investigate why I had been having kidney stones for 8 years before. Hmmm this was about the time when it dawned on me that most doctors do not care about my health as much as *I* do, and that I needed to step up to the plate and become my own health advocate <sigh>. Had the (old style) surgery performed by a general surgeon in New Orleans. the surgery took a long time due to the exploratory nature and probably his own inexperience w/the dang thing. I lost my voice for a few months and incidentally, never did recover my vocal range :(

Anyway, it appeared to have fixed my problem....or I guess just for a few years. I went in a couple of weeks ago and had my spine xrayed due to a pinched nerve and it showed MULTIPLE kidney stones on both sides :( So had them run blood work and the pth is high again (although my calcium is high end of normal). I've also been dx'd w/osteopenia in my left hip. DARN, Darn, D A R N!!!

I've got an appt w/a local 'specialist' next week, but have been investigating on my own until then. It seems that no one here in the area does MIRPs....so I'm looking into where I can go (who will take my insurance)!

I've read all over the internet and the only info regarding which doctors do this procedure (besides Dr. Norman's sites) seems to be here...good work guys!

So far, I've heard, of course, of Dr. Norman in Tampa (I've contacted their office and they do NOT take my insurance ~~boo hoo~~). I've only heard of two other doctors mentioned here that do the MIRPs (but I'm sure there must be others!). There is a Dr. Richard Goldstein, head of surgery at Yale in New Haven, CN, and then there is a doctor associated with the University of CASF, right? I don't think her? name was given. Does anyone know this doctors names? Do you know of any others who perform the MIRPs???

Did you find one who took your insurance, or did you end up paying for the surgery out-of-pocket?

Many thanks,
~~denise

nr2go

04-15-2006, 12:59 AM

Welcome swampmomster,

You might check with the Standford Comprehensive Cancer Center in the San Francisco bay area. They perform the MIRP procedure. You might also check with John Hopkins in Maryland. They were conducting research on the MIRP method sometime back. Dr. Politz who currently is working with Dr. Norman in Tampa introduced the MIRP procedure to the state of Texas. He was working in Austin, TX then. Not sure which hospital, but I would think that if you contacted the Norman Parathyroid Clinic again they could tell you which hospital Dr. Politz was working at. At any one of them might take your insurance.

Good Luck,

swampmomster

04-15-2006, 01:34 AM

elphers

04-21-2006, 08:03 AM

Hi,
I have been reading all of the posts. Now I'm curious. Yesterday I had my appt. with my hemo. My platelets and iron are finally pretty good. I mentioned always feeling exhausted, so now I am getting monthly B-12 shots. (which never seemed to help years ago, but I'll try anything now!) I also told him about my recent dexa scan showing osteopenia going to osteoporosis after 15 months of Actonel and calcium. I asked him to check my calcium level. This was not on my last weeks blood test, but my last calcium check (which I think was Jan.) was 8.7. He mentioned parathyroid (just said with high calcium it has to be watched),but didn't say anything about checking my PTH level.(because of my nromal calcium level.) I go back to him in 6 months.
I have many symptoms that were mentioned on parathyroid.com, but I also have celiac sprue which may be part of my problem(?). I guess I'm wondering if anyone thinks that I should see an endocrinologist? I've read that I can have normal calcium levels with this . I wish that he would have checked my PTH.
Does anyone have bone pain with osteoporosis?
Thanks!
Thanks all!

nr2go

04-21-2006, 10:01 AM

Personally I think you would be better off seeing an endocrinologist since they deal with glands and hormones. I would trust them to know what tests need to be done. He/she may also want to check your thyroid levels. Not sure which symptoms you have, but they may be due to a thyroid imbalance.

Keep us posted. :)

PT6

04-22-2006, 12:55 AM

I am scheduled for surgery at Stanford on May 2. The endocrine surgeon has an impressive reputation. Unfortunately, I am not a candidate for the MIRP as I may have MENS 1 and the surgeon stated that he needed a closer look at things. I am scheduled for exploratory parathyroid surgery. I'll post back when it's done and tell you how it goes.

swampmomster

04-30-2006, 11:48 PM

Oh shoot - We're thick into rebuilding after Katrina and I hadn't been able to check these forums for a few days to see if there were any replies to my query. Now I see that there WAS one, but it was deleted by a moderator because of a rule (which I was unaware of before it was stated as reason for deleting the response) of not listing dr.s phone numbers? Can the poster please repost with the information that you _are_ allowed to post? I guess just the name of the doctor?...perhaps the clinic or hospital where they are affiliated? thanks so much! ~denise

swampmomster

04-30-2006, 11:51 PM

PT6 - Who are you seeing at Stanford? I read some good things about a Dr. Udleman up there, if I remember correctly (don't know if the spelling is correct). best of luck on your surgery! ~~denise

trteva

05-02-2006, 02:03 AM

Hope everything goes smoothly for you PT6!!! Best of Luck!!

meemaj

05-03-2006, 12:20 AM

Hi, Swampmomster. Maybe I was the one who broke the rules? I had the surgery in September 2005 by Dr. Robert Udelsman in New Haven, Connecticut. He is one of the 2 top docs in the US for this type of minimally invasive surgery. The other doc is in San Francisco. Udelsman is chief of surgery at Yale. ( REMOVED - PLEASE READ AND FOLLOW THE POSTING RULES - LAST WARNING BEFORE BANNING - NAME, CITY AND STATE ONLY THEN STOP )

I was very pleased with the experience, although I'm disappointed that I don't feel any different than before the surgery. All my blood and calcium levels, however, are back to normal and I am considered "cured". I was hoping for miracles, that I wouldn't feel tired, etc. but I guess at 63 that is not realistic.

If you look back at my posts, you'll see that I was walking around New Haven the same afternoon as the surgery, which is pretty amazing. My scar looks terrific too. The whole surgery was very easy.

My insurance covered almost every penny of the surgery, though not the hotel bill (that was deductible for taxes though).

Let me know if you have questions and keep us posted on what's happening with you. Good luck! --meema j

PT6 - Who are you seeing at Stanford? I read some good things about a Dr. Udleman up there, if I remember correctly (don't know if the spelling is correct). best of luck on your surgery! ~~denise

PT6

05-05-2006, 12:50 AM

I'm seeing Dr. Norton in Stanford, CA. Evidently he use to be in San Francisco. I have had to reschedule my surgery twice. I have this darn urinary tract infection which I am having trouble getting rid of. The surgery is now scheduled for July 6th. I may change this as it involves a teaching hospital and July is NOT the time you want to be dealing with a teaching hospital. Were you aware that all the residents in teaching hospitals in all of the United States start new positions on July 1 of each year? Evidently my problem does not qualify for the quick and simple so I will be having an exporatory surgery of the parathyroids.

Joyce1957

06-16-2006, 05:37 AM

WOW! This whole thread has been such a Godsend to me!
I was diagnosed with Hyperparathyroidism in Oct. 2005. I believe I have had it for at least five years or more. I did my own research, fought for the tests to prove my points and finally was able to convince my PC Dr. that high blood calcium was never "OK." (He had said, "oh it's not that high, don't worry about it." It was 11.3 when it first showed up on routine bloodwork.) I was then referred to an endo which was another uphill battle. He wanted me to have the old 4" incision procedure. I declined showing him Dr. Norman's site and explaining the reasons why it would be better for me and the ins. co if I had the mini procedure, something they don't do here in my neck of the woods, no pun intended! Anyway, after much cajoling, I am scheduled for surgery in Tampa on July, 11. I am still struggling with my ins. (HMO) co. to get it covered however. Have any of you had that problem and if so, how did you resolve it?
Thanks for all your input!

Flifer

06-24-2006, 08:31 PM

Hi,
I had my surgery several months ago after spending a year "watching it." I do have osteoporosis again due to this waiting. I was okay a year ago and can only assume, I'm improving now that the surgery is over and I'm back on calcium supplements.

I am very tired though with pain in my legs which is blamed on back problems. I read in an early post here of someone with the same complaints. Makes me wonder what is going on. I am overweight (20 lbs) and trying to do something about it but wonder if the fatigue is due to something else.
Marcia

PT6

06-26-2006, 03:38 AM

Well, my surgery is rescheduled for this Thursday. The sestamebe scan was negative so they have been unable to localize the tumor for the MIRP surgery. I had an ultrasound of the parathyroids last week as a last ditch effort to localize the problem. There is a distinct possiblitiy that the problem is hyperplasia as opposed to an adenoma. If it is hyperplasia, a diagnosis of MENS 1 (multiple endrocrine neoplasm syndrome) would be confirmed. Anyway, it looks like I will be getting the resection. YUCK!

Joyce1957

06-26-2006, 04:03 AM

YUK indeed,
Sorry to hear they couldn't locate your problem ahead of time. I take it your surgeon is "in network" then and thus covered by your insurance?
I ask because I am seeing Dr. Norman in Fla. soon and he will do a MIRP even if your scan is negative. He does a sestamibi scan on site just prior to the surgery and he's the only Endo surgeon I know of thet uses a hand held intra-operative probe to futher enhance his ability to locate with a more than 99% accuracy(because you are still 'radioactive'), the probmem area/areas. Even in the cases such as yours, he does an insicion of only 1.25 inches in most cases. You may want to take a look at parathyroid.com when you get a chance. I know it's probably too late now to change your mind being that your surgery is so soon, but I believe there's no such thing as too much information!

PT6

06-26-2006, 01:48 PM

Joyce1957,

I looked into Dr. Norman but decided to go with Dr. Norton because of Dr. Norton's experience with MENS 1. It's the MENS 1 thing that is throwing a monkey wrench into everything. In one of Dr. Norman's articles he refers to MIRP being appropriate for many people except in the case of MENS 1.

"Minimally-invasive parathyroidectomy (MIP) appears to be changing preoperative treatment and referral patterns for sporadic, nonfamilial, non–multiple endocrine neoplasia, primary hyperparathyroidism (PHPT)."

Dr. Norton was familiar with Dr. Norman's work.

I'll post after I have my surgery.

PT6

Joyce1957

06-26-2006, 04:52 PM

Well... sounds like you've been doing as much research as I have!:rolleyes:

You really have to be your own best advocate in this matter.

Dr. Norton sounds most appropriate for your condition. Best of luck with your surgery and do keep us posted.