NY 1009
09-02-2006, 11:38 AM
I see quite a few people here diagnosed with this condition and am finding out that it can be the culprit to osteoporosis.
I never knew of this till I came here and read the posts.
for all of you who were diagnosed with this hyper pt did your drs first do a blood test and is this test performed on cbc? or do you have to do a specific hormone test?
another question. were your conditions discovered thru an MRI? or only the blood work?
can an MRI detect hyperparathyroid disease?
I have a lymphnode on neck under jaw that's been there for quite some time and most general surgeons won't touch it because it's on the carotid artery,
I was referred to an ent the other day and she is requesting an MRI.
I had an excisional biopsy performed back in 1997 which turned out to be a huge node but was just atypical hyperplasia.
I was just diagnosed with osteoporosis last week and am wondering if i should ask my dr to perfom the special blood test or will the mri be able to detect if I have hyper pt.
I have all the same symtoms as the people who've been diagnosed with it.
so many questions and all I can do is wait. meanwhile I'm asking around so I have a better stance to take when I see my dr.
Linda
I never knew of this till I came here and read the posts.
for all of you who were diagnosed with this hyper pt did your drs first do a blood test and is this test performed on cbc? or do you have to do a specific hormone test?
another question. were your conditions discovered thru an MRI? or only the blood work?
can an MRI detect hyperparathyroid disease?
I have a lymphnode on neck under jaw that's been there for quite some time and most general surgeons won't touch it because it's on the carotid artery,
I was referred to an ent the other day and she is requesting an MRI.
I had an excisional biopsy performed back in 1997 which turned out to be a huge node but was just atypical hyperplasia.
I was just diagnosed with osteoporosis last week and am wondering if i should ask my dr to perfom the special blood test or will the mri be able to detect if I have hyper pt.
I have all the same symtoms as the people who've been diagnosed with it.
so many questions and all I can do is wait. meanwhile I'm asking around so I have a better stance to take when I see my dr.
Linda
Sponsor
mo2willow
09-02-2006, 01:59 PM
Mine was discovered from bloodwork performed during my annual exam, basically showing that the calcium levels in my blood were too high, so it wasn't a special blood test. At that time, I wasn't feeling any symptoms. I am not sure about seeing it on an MRI, for me, they injected something into my bloodstream that automatically went to the tumor, so they could see it on an x-ray.
DesertBloom
09-02-2006, 07:25 PM
Linktek: I just wanted to add to the previous post about your question. To clarify, I haven't been diagnosed with Hyperparathyroidism, but when I had my regular blood panel done my calcium level was normal, and this was done per Forteo treatment initiation. After that I saw an Endo, and he did a Serum Ionized Calcium test (different test) which came back slightly elevated. My point here is sometimes that happens, so ask your Dr. to do both tests, or at least make sure that if one test comes back normal have the second one to be sure. My PTH and Thyroid is normal so my elevated calcium doesn't directly point to hyperpara... Because of all this, I am now seeing a specialist to figure it out. Just make sure all bases are covered if need be. If I hadn't had the second test I wouldn't have known about the elevated calcium, and wouldn't be in the midst of the tests I am now to find out why it is slightly high. Because of this I had to stop the Forteo temporarily, and am not that happy that the first Dr. didn't do the Serum Ion. Calcium test to begin with. I'm sure there are other test to diagnose hyperpara... but I don't know exactly what they are, but I'm sure you could find out from others or Google it.
Good Luck...
Good Luck...
taape
09-03-2006, 02:26 AM
Pam 1,
If I remember this right the endocrinologist I have been seeing since starting the Forteo said that blood calcium could be a little elevated because the Forteo keeps the calcium regulated and a little higher depending on when the tests are run. I wasn't taken off Forteo as she wasn't concerned about this at the time. If your calcium level was seriously outside of the guidelines for normal it's good to get it checked further.
If I remember this right the endocrinologist I have been seeing since starting the Forteo said that blood calcium could be a little elevated because the Forteo keeps the calcium regulated and a little higher depending on when the tests are run. I wasn't taken off Forteo as she wasn't concerned about this at the time. If your calcium level was seriously outside of the guidelines for normal it's good to get it checked further.
CrohnieToo
09-03-2006, 09:40 AM
Prior to my starting Forteo my Endo scripted the parathyroid hormone intact w/ionized calcium, vitamin D 25 hydroxy, vitamin D1 25 hydroxy and serum calcium blood draws to be done. Also the Endo preferred my PTH be below 30 prior to my starting Forteo. He only ordered the vitamin D1 25 hydroxy the first blood draw and then a year later he ordered it a second time plus the 3 part thyroid test: T3, T4 and ?? (I've forgotten).
He also keeps an eye on my ALT?, AST?, ALP?, I'm not sure which w/o going back and looking. Its scripted by my gastro as part of my regular 3 month blood draws for a medication I am on for another disease so my Endo just gets a copy of the entire blood draw and doesn't need to also script that test whichever one it is.
He also keeps an eye on my ALT?, AST?, ALP?, I'm not sure which w/o going back and looking. Its scripted by my gastro as part of my regular 3 month blood draws for a medication I am on for another disease so my Endo just gets a copy of the entire blood draw and doesn't need to also script that test whichever one it is.
NY 1009
09-03-2006, 11:36 AM
I can't recall where I read this recently and I went back trying to find this from a womans post which she happens to be a nurse.
she said if she hadn't had the knowledge of asking for a specific test, they wouldn't have been able to diagnose her immediatly.
she was greatful to have had the knowledge so she could specifically request the certain blood test to be performed. she was able to get treatment and started to feel better.
which is what I've been seeking for so long. I feel that there's something going on in my body which is effecting my memory terribly. It really bothers me but we write it off as menoapause. I stated before that I am in surgical menopause since last Oct of 2005.
my memory problem and medical problems all started a few yrs before the surgery. so I'm thinking it can't be just the meno but I"m sure it adds to it.
I am on estrogen which is helping me tremendously.
but not my memory. I have brain fog and can't recall being told things an hour before. I'm messing up on my job and making mistakes.
there is somthing definetly causing my once supurb memory to dwindle so quickly and no one seems to take me seriously. not even my S.O.
I'm extemely frustrated and I panic each time I see I've done something wrong due to my memory problem.
I am achey almost every day on different parts of my body bone and joint wise, my toes go into spasms every day for almost a 1/2 yr now.
I'll never forget last snow storm trying to drive home from work and my feet suddenly going into spasms. I forced myself to not pull over because I wouldn't be able to get up the hill if I stopped. it sounds like such a little thing but it even effects me when laying in bed if the sheets are too tight and hold your toes in a pointed position, the cramps come on.
it's weird and I become more mystified as time continues and want an answer.
I want so desperatly to not feel so darn fatiqued during my 8hour work day.
there are days I want to cry I feel so horrible but i can't keep leaving work due to my not feeling well. I will get fired. my bosses have been extemely patient with me.
I used to have so much energy and now have none. I can sleep and sleep and sleep. I can barely find the energy to make full course meals anymore for my family and my S.O. buys us easier foods for me to prepare. I never bought frozen meals in my life, until now.
it's not depression or anxiety causing it like we first thought because I have clearance on that from a psychiatrist and I am on medication now for two yrs now. I lost alot of weight and even gave up smoking just to help put some weight back on.
a woman my age does not look very flattering with too much wieght loss.
the muscles get zapped away which makes us look older and sickly looking.
I've had so many say to me, they wish they had my problem and that they'd be able to lose weight without trying.
it felt good at first to lose some weight but when it didn't stop and I went from a size 8 to a size 1, I was frightened.
We still have no answer to this and a light bulb went off in my head when I read this particular womans post. she had very simular symtoms as well as other woman who have posted here about this condition.
that's why I wanted to know how you all came about getting your diagnosis.
does this condition just jump right out at you or is it difficult to diagnose?
I want to feel good again, that's all.
thanks for listening ladies.
Linda
she said if she hadn't had the knowledge of asking for a specific test, they wouldn't have been able to diagnose her immediatly.
she was greatful to have had the knowledge so she could specifically request the certain blood test to be performed. she was able to get treatment and started to feel better.
which is what I've been seeking for so long. I feel that there's something going on in my body which is effecting my memory terribly. It really bothers me but we write it off as menoapause. I stated before that I am in surgical menopause since last Oct of 2005.
my memory problem and medical problems all started a few yrs before the surgery. so I'm thinking it can't be just the meno but I"m sure it adds to it.
I am on estrogen which is helping me tremendously.
but not my memory. I have brain fog and can't recall being told things an hour before. I'm messing up on my job and making mistakes.
there is somthing definetly causing my once supurb memory to dwindle so quickly and no one seems to take me seriously. not even my S.O.
I'm extemely frustrated and I panic each time I see I've done something wrong due to my memory problem.
I am achey almost every day on different parts of my body bone and joint wise, my toes go into spasms every day for almost a 1/2 yr now.
I'll never forget last snow storm trying to drive home from work and my feet suddenly going into spasms. I forced myself to not pull over because I wouldn't be able to get up the hill if I stopped. it sounds like such a little thing but it even effects me when laying in bed if the sheets are too tight and hold your toes in a pointed position, the cramps come on.
it's weird and I become more mystified as time continues and want an answer.
I want so desperatly to not feel so darn fatiqued during my 8hour work day.
there are days I want to cry I feel so horrible but i can't keep leaving work due to my not feeling well. I will get fired. my bosses have been extemely patient with me.
I used to have so much energy and now have none. I can sleep and sleep and sleep. I can barely find the energy to make full course meals anymore for my family and my S.O. buys us easier foods for me to prepare. I never bought frozen meals in my life, until now.
it's not depression or anxiety causing it like we first thought because I have clearance on that from a psychiatrist and I am on medication now for two yrs now. I lost alot of weight and even gave up smoking just to help put some weight back on.
a woman my age does not look very flattering with too much wieght loss.
the muscles get zapped away which makes us look older and sickly looking.
I've had so many say to me, they wish they had my problem and that they'd be able to lose weight without trying.
it felt good at first to lose some weight but when it didn't stop and I went from a size 8 to a size 1, I was frightened.
We still have no answer to this and a light bulb went off in my head when I read this particular womans post. she had very simular symtoms as well as other woman who have posted here about this condition.
that's why I wanted to know how you all came about getting your diagnosis.
does this condition just jump right out at you or is it difficult to diagnose?
I want to feel good again, that's all.
thanks for listening ladies.
Linda
taape
09-03-2006, 04:10 PM
I don't know of hyperparathyroid causes memory problems. Are you taking any medications that might cause this? I've never heard that menopause causes memory problems but I guess it could but I'd question to the degree that you are describing. I hope you can find out what the problem is soon.
DesertBloom
09-03-2006, 07:13 PM
Hi Taape and CrohnieToo: I will try to explain my situation with the calcium test, but it’s loaded with missteps and possible bad advice, in my opinion.
My first Metabolic Panel showed my calcium level as normal, so that Dr. prescribed Forteo. Later I found out it was going to take about a month or so to get the first Forteo pen, so I decided to get a second opinion, because I had a nagging feeling about my osteo… diagnosis, even though I have all of the known risk factors for it. I didn’t have anything to blame this feeling on, so it was just one of those things that wouldn’t go away where I felt something else was going undiagnosed. The second Dr. (Endo) ordered all the normal thyroid tests, and only 3 came back as abnormal, my ionized calcium level (slightly elevated), D3 elevated and hormone level extremely low. With this info the Dr. said I could go ahead with the Forteo anyway but stop the calcium supplements, which I did. Shortly after this he changed his mind and wanted me to stop the Forteo, but left the ultimate decision up to me, adding that the Forteo probably wouldn’t make much difference in the calcium level anyway other than raise it a few points.
Now I’m really confused but still taking the Forteo, and since he had been bugging me about seeing a specialist, at the Univ., I decided to do so because I didn’t know what to make of all this, since my PTH etc. was normal.
Now I’m off the Forteo until October so it will be out of my system for a month, and then I will have the ionized calcium test done again for the 5th time since March. For now I don’t have any answers to any of this until I get some test results back. I have been told by the Univ. Dr. that these calcium test are highly variable and easy to mishandle at the lab level, so for now no one seems to know if the problem was actually there before the initiation of Forteo or not or if it was a mistake. If any of this makes any sense to either of you, my hats off to you…
My first Metabolic Panel showed my calcium level as normal, so that Dr. prescribed Forteo. Later I found out it was going to take about a month or so to get the first Forteo pen, so I decided to get a second opinion, because I had a nagging feeling about my osteo… diagnosis, even though I have all of the known risk factors for it. I didn’t have anything to blame this feeling on, so it was just one of those things that wouldn’t go away where I felt something else was going undiagnosed. The second Dr. (Endo) ordered all the normal thyroid tests, and only 3 came back as abnormal, my ionized calcium level (slightly elevated), D3 elevated and hormone level extremely low. With this info the Dr. said I could go ahead with the Forteo anyway but stop the calcium supplements, which I did. Shortly after this he changed his mind and wanted me to stop the Forteo, but left the ultimate decision up to me, adding that the Forteo probably wouldn’t make much difference in the calcium level anyway other than raise it a few points.
Now I’m really confused but still taking the Forteo, and since he had been bugging me about seeing a specialist, at the Univ., I decided to do so because I didn’t know what to make of all this, since my PTH etc. was normal.
Now I’m off the Forteo until October so it will be out of my system for a month, and then I will have the ionized calcium test done again for the 5th time since March. For now I don’t have any answers to any of this until I get some test results back. I have been told by the Univ. Dr. that these calcium test are highly variable and easy to mishandle at the lab level, so for now no one seems to know if the problem was actually there before the initiation of Forteo or not or if it was a mistake. If any of this makes any sense to either of you, my hats off to you…
DesertBloom
09-03-2006, 08:03 PM
Hi Lintek: I've seen "confusion, impaired thinking, and memory loss" listed as symptoms of hyperpara... at the Institute of Health and Mayo Clinics web site, and others I can't recall right now. If you then look somewhere else, they may not list those symptoms at all. Since I've been reading about this, I've found that you can get many different symptom lists etc. depending on where you go to read about it. In the end, I suppose it's up to the patient and the treating Dr. to decide which info actually applies.
Good Luck again...
Good Luck again...
PT6
09-04-2006, 02:15 AM
I want to report back on my hyperparathyroid surgery this summer. I have had elevated PTH (162 - 221) for the past 2 years. Initially my ionized Ca++ was slightly elevated but not too much. The calcium level dropped to normal (9.8) soon after discovering the hyperparathyroidism. I did not appear to be having any symptoms (boy, were we wrong!) other than mild osteopenia so no hyperparathyroid surgery was recommended. After about 1.5 years, with no significant changes, the endocrinologist I see at a large university center recommended that I have the surgery - no particular reason as nothing had changed - he just thought that it would be a good idea. My local endocrinologist totally and vehemently disagreed. I decided to go with the more experienced endo and signed up for the surgery.
In the meantime, I had been developing significant bilateral thigh muscle pain. I have bilateral hip replacements and the replacement on the side of the most pain was old (15 years) and needs to be revised. The orthopedist stated that he thought the problem was my back instead of my hip because it was bilateral. I was sent to another MD who ordered multiple nasty tests such as EMGs and nerve conduction velocity along with the usual x-rays and MRIs. Things were not conclusive and he even wanted to do a mylagram. As you can see the tests were getting more and more invasive and more and more unpleasant. Since the MDs could not agree on the cause of my leg pain, I decided to proceed with the paratyroidectomy (PTH 162, Ca++ 9.8). At this point, I could only walk ~20 feet without horrible leg pain.
The first thing that I noticed after I woke from the surgery was that my leg pain was gone - vanished - kapoot! As the weeks have pasted since the surgery I have noticed that the brain fog has lifted and I feel better than I have for years. I highly recommend the surgery - note that my lab values were normal for Ca++ and the surgery still made a huge difference. Thank goodness for the experienced endo. Unfortunately, I recently discovered I have a kidney stone that will need to be blasted - undoubtly a rement of my years with hyyperparathyroidism.
In the meantime, I had been developing significant bilateral thigh muscle pain. I have bilateral hip replacements and the replacement on the side of the most pain was old (15 years) and needs to be revised. The orthopedist stated that he thought the problem was my back instead of my hip because it was bilateral. I was sent to another MD who ordered multiple nasty tests such as EMGs and nerve conduction velocity along with the usual x-rays and MRIs. Things were not conclusive and he even wanted to do a mylagram. As you can see the tests were getting more and more invasive and more and more unpleasant. Since the MDs could not agree on the cause of my leg pain, I decided to proceed with the paratyroidectomy (PTH 162, Ca++ 9.8). At this point, I could only walk ~20 feet without horrible leg pain.
The first thing that I noticed after I woke from the surgery was that my leg pain was gone - vanished - kapoot! As the weeks have pasted since the surgery I have noticed that the brain fog has lifted and I feel better than I have for years. I highly recommend the surgery - note that my lab values were normal for Ca++ and the surgery still made a huge difference. Thank goodness for the experienced endo. Unfortunately, I recently discovered I have a kidney stone that will need to be blasted - undoubtly a rement of my years with hyyperparathyroidism.
NY 1009
09-04-2006, 10:12 AM
I would do anything to get my memory back. I never know when I'm going to make a mistake so have to be extra diligent and pay even more attention to detail than normal, which can be exhausting.
I read a few places just from woman posting that they immediately felt better with their memory once they were diagnosed and treated.
its like a brain fog. I can't explain it to anyone. only someone who is going thru it themselves might understand what I mean.
there are many factors that can cause memory problems but if you don't find a dr who will sit long enough and listen to me, what the heck am I to do meanwhile as time passes on and it's only getting worst?
that's why I got so excited when I read the possiblity of the parathyroid problem. no one ever tested me for this. and now that I have osteoporosis which brought me to this board, it's opening up new doors for a diagnosis.
It it's this simple as an answer to the problem, I would be so elated to be able to feel normal again. I can't wait to see my endocronologist to ask her of this possiblity.
thanks for your opinions everyone.
and yes, only a dr can determine what it is.
if you can find one that will listen.
Linda
I read a few places just from woman posting that they immediately felt better with their memory once they were diagnosed and treated.
its like a brain fog. I can't explain it to anyone. only someone who is going thru it themselves might understand what I mean.
there are many factors that can cause memory problems but if you don't find a dr who will sit long enough and listen to me, what the heck am I to do meanwhile as time passes on and it's only getting worst?
that's why I got so excited when I read the possiblity of the parathyroid problem. no one ever tested me for this. and now that I have osteoporosis which brought me to this board, it's opening up new doors for a diagnosis.
It it's this simple as an answer to the problem, I would be so elated to be able to feel normal again. I can't wait to see my endocronologist to ask her of this possiblity.
thanks for your opinions everyone.
and yes, only a dr can determine what it is.
if you can find one that will listen.
Linda
DesertBloom
09-04-2006, 01:03 PM
PT6: I have been told I have slightly elevated serum ionized calcium, and it's at 1.5. Is the normal score for calcium you posted particular to your lab/you? I don't have my lab report so I can't look up what normal is for my age, gender, race, lab etc. If normal is what you said how could mine be elevated? Also my 125-dihydroxy vitamin D3 is 82 which am told is elevated. Just wondered if you could shed any light on these figures? I feel as though I have every symptom of hyperpara... but my PTH etc, is normal so the Dr. is still in the process of figuring this out. My t-score started out at -3.6 and went to -3.4 at my last scan.
PT6
09-04-2006, 06:06 PM
Pam 1,
My latest lab test (yesterday) included a serum calcium. My result was 8.8. The lab test indicates that 8.5 is considered low and 10.8 is considered high. I had ionized Calcium done a few weeks ago and the result was 7.4. Are you in the US? Different countries sometimes use different standards in their lab tests. My vitamin D has always been normal.
My latest lab test (yesterday) included a serum calcium. My result was 8.8. The lab test indicates that 8.5 is considered low and 10.8 is considered high. I had ionized Calcium done a few weeks ago and the result was 7.4. Are you in the US? Different countries sometimes use different standards in their lab tests. My vitamin D has always been normal.
harry reeves
09-04-2006, 06:29 PM
My calcium was not high, nothing showed up on the scan. What did show up was a 30% bone loss. When they looked inside they found 3 tumors and one atrpohyied para thyroid ,removed all but a third of one and now i am waiting I can not explain it but I feel different. Not near as many aches and pains so far no heart arrithmyias, Think better ,remmember better ,my wife says i am not as cranky I can not believe she said that. I was never cranky. I have seen at least 14 doctors in the last 5 years and it was the bone loss that started me off in the right direction all doctors are not equal and most folks don`t really understand that.
DesertBloom
09-04-2006, 06:35 PM
Pam 1,
My latest lab test (yesterday) included a serum calcium. My result was 8.8. The lab test indicates that 8.5 is considered low and 10.8 is considered high. I had ionized Calcium done a few weeks ago and the result was 7.4. Are you in the US? Different countries sometimes use different standards in their lab tests. My vitamin D has always been normal.
Yes I'm in the U.S. I only have two of the four lab results for this test right now, and both were sent to me via a typed letter from the Dr's office. As I mentioned, the second test was typed as a 1.5 result, and claiming that was slightly elevated and the third test arrived the same way on a letterhead from the Dr. stating it was 1.43 which he states is still slightly elevated. I'll have to look into this further... Thanks for the info.
My latest lab test (yesterday) included a serum calcium. My result was 8.8. The lab test indicates that 8.5 is considered low and 10.8 is considered high. I had ionized Calcium done a few weeks ago and the result was 7.4. Are you in the US? Different countries sometimes use different standards in their lab tests. My vitamin D has always been normal.
Yes I'm in the U.S. I only have two of the four lab results for this test right now, and both were sent to me via a typed letter from the Dr's office. As I mentioned, the second test was typed as a 1.5 result, and claiming that was slightly elevated and the third test arrived the same way on a letterhead from the Dr. stating it was 1.43 which he states is still slightly elevated. I'll have to look into this further... Thanks for the info.
DesertBloom
09-04-2006, 10:49 PM
Pam 1,
Try this link:
http://www.flash-med.com/LabNormal.asp
There seems to be two systems - conventional units and SI units. Your numbers seem to correspond to SI units.
Conventional SI
Calcium (serum) 9-10.5 mg/dL 2.25-2.62 mmol/L
Ionized calcium (blood) 4.5-5.6 mg/dL 1.1-1.4 mmol/L
Ooops! the columns did not go through into HTML. Anyway, the first numbers are conventional units and the second numbers are SI units.
Note that these numbers do not seem to match the parameters that were given in my test results but they are close.
Try this link:
http://www.flash-med.com/LabNormal.asp
There seems to be two systems - conventional units and SI units. Your numbers seem to correspond to SI units.
Conventional SI
Calcium (serum) 9-10.5 mg/dL 2.25-2.62 mmol/L
Ionized calcium (blood) 4.5-5.6 mg/dL 1.1-1.4 mmol/L
Ooops! the columns did not go through into HTML. Anyway, the first numbers are conventional units and the second numbers are SI units.
Note that these numbers do not seem to match the parameters that were given in my test results but they are close.
DesertBloom
09-04-2006, 11:58 PM
Thanks so much for the clarification, but I'm still having trouble interpreting my scores since they don't fall within the SI Units either unless you use the MMOL/L which I have no idea what that means, except one correspondes to a miligram/deciliter and I don't know what the second one explains (MMOL/L).
You sure did save me a lot ot time on this, I've been looking it up for months, and keep reading that lab results vary from lab to lab on normal results.
Pam :)
You sure did save me a lot ot time on this, I've been looking it up for months, and keep reading that lab results vary from lab to lab on normal results.
Pam :)
DesertBloom
09-05-2006, 12:49 AM
Sorry to bother you so much, but at least I now know what MMOL/L means and how to convert it if need be. I guess you already know this, but "I" learned it means Millemoles per Liter.
Actually though I wanted to thank you for spending "your" valuable time looking up something for me, you're very sweet!!
Thanks again,
Pam
Actually though I wanted to thank you for spending "your" valuable time looking up something for me, you're very sweet!!
Thanks again,
Pam
QueenBmaster
10-02-2006, 10:56 AM
Pam,
I stumbled across this thread, while searching hypercalcemia. Have you gotten anymore answers as to what is causing your high calcium? I too am suffering from non-parathyroid hypercalcemia, (high serum calcium). I had three and one half of my parathyroids removed in 2001. I am still running high on the calcium, 10.9. My PTH levels are normal, and a scan with the dye, didn't show anything appearing abnormal with the last remaining one half parathyroid. Now my Endo has put me on a fairly new drug, Sensipar, (used primarly for parathyroid cancer). What it does is inhibit the parathroid receptors. When I first went on it, she had me on too high of a dose, and my calcium dropped to fast, causing me to have symptoms of hypocalcemia. I'm having my doubts as to being on this med. although it does lower my clacium levels, it does so, by interferring with a healthy parathyroid. There are other reasons why a person goes hypercalcemic, and if the parathyroids are ruled out, then I believe that the DR should be looking for the answers as to why, not just drug me and say there. It doesn't answer the big why, for me anyways. I"m so tired out all the time, my whold body is constatly aching, and now, with this med, my muscles are cramping up all the time.
I stumbled across this thread, while searching hypercalcemia. Have you gotten anymore answers as to what is causing your high calcium? I too am suffering from non-parathyroid hypercalcemia, (high serum calcium). I had three and one half of my parathyroids removed in 2001. I am still running high on the calcium, 10.9. My PTH levels are normal, and a scan with the dye, didn't show anything appearing abnormal with the last remaining one half parathyroid. Now my Endo has put me on a fairly new drug, Sensipar, (used primarly for parathyroid cancer). What it does is inhibit the parathroid receptors. When I first went on it, she had me on too high of a dose, and my calcium dropped to fast, causing me to have symptoms of hypocalcemia. I'm having my doubts as to being on this med. although it does lower my clacium levels, it does so, by interferring with a healthy parathyroid. There are other reasons why a person goes hypercalcemic, and if the parathyroids are ruled out, then I believe that the DR should be looking for the answers as to why, not just drug me and say there. It doesn't answer the big why, for me anyways. I"m so tired out all the time, my whold body is constatly aching, and now, with this med, my muscles are cramping up all the time.
DesertBloom
10-02-2006, 02:23 PM
Pam,
I stumbled across this thread, while searching hypercalcemia. Have you gotten anymore answers as to what is causing your high calcium? I too am suffering from non-parathyroid hypercalcemia, (high serum calcium). I had three and one half of my parathyroids removed in 2001. I am still running high on the calcium, 10.9. My PTH levels are normal, and a scan with the dye, didn't show anything appearing abnormal with the last remaining one half parathyroid. Now my Endo has put me on a fairly new drug, Sensipar, (used primarly for parathyroid cancer). What it does is inhibit the parathroid receptors. When I first went on it, she had me on too high of a dose, and my calcium dropped to fast, causing me to have symptoms of hypocalcemia. I'm having my doubts as to being on this med. although it does lower my clacium levels, it does so, by interferring with a healthy parathyroid. There are other reasons why a person goes hypercalcemic, and if the parathyroids are ruled out, then I believe that the DR should be looking for the answers as to why, not just drug me and say there. It doesn't answer the big why, for me anyways. I"m so tired out all the time, my whold body is constatly aching, and now, with this med, my muscles are cramping up all the time.
Hi QueenBmaster:
No I haven't gotten anymore answers on my calcium level, but to clarify, it was only slightly elevated at 1.5. I had another serum ionized cal test last week after stopping forteo for over a month and waiting to see what the results will be. As I mentioned my PTH is normal, and as far as I know, I don't have multiple myeloma, kidney probs, etc. so it doesn't directly point to the usual stuff, so I really don't know what the problem is. I would imagine that I will probably hear the usual, which is, "you're just one of those people who run slightly high". Also, the elevated cal started "before" I started the forteo, so they can't blame it on that either. So I'll have to wait and see what the answer is in a couple of weeks when I see the dr.
Do you know of any other things that cause this? Can I ask you why they took out 3 1/2 parathyroids? Can you have a problem with them that doesn't show up on ultra sounds and blood tests? I've had an ultra sound of my thyroid, not parathyroid, and they found 2 nodules, but decided to leave them for another 6 mos. they are on my carotid artery, but the artery doesn't show any blockages.
Good Luck...
Pam
I stumbled across this thread, while searching hypercalcemia. Have you gotten anymore answers as to what is causing your high calcium? I too am suffering from non-parathyroid hypercalcemia, (high serum calcium). I had three and one half of my parathyroids removed in 2001. I am still running high on the calcium, 10.9. My PTH levels are normal, and a scan with the dye, didn't show anything appearing abnormal with the last remaining one half parathyroid. Now my Endo has put me on a fairly new drug, Sensipar, (used primarly for parathyroid cancer). What it does is inhibit the parathroid receptors. When I first went on it, she had me on too high of a dose, and my calcium dropped to fast, causing me to have symptoms of hypocalcemia. I'm having my doubts as to being on this med. although it does lower my clacium levels, it does so, by interferring with a healthy parathyroid. There are other reasons why a person goes hypercalcemic, and if the parathyroids are ruled out, then I believe that the DR should be looking for the answers as to why, not just drug me and say there. It doesn't answer the big why, for me anyways. I"m so tired out all the time, my whold body is constatly aching, and now, with this med, my muscles are cramping up all the time.
Hi QueenBmaster:
No I haven't gotten anymore answers on my calcium level, but to clarify, it was only slightly elevated at 1.5. I had another serum ionized cal test last week after stopping forteo for over a month and waiting to see what the results will be. As I mentioned my PTH is normal, and as far as I know, I don't have multiple myeloma, kidney probs, etc. so it doesn't directly point to the usual stuff, so I really don't know what the problem is. I would imagine that I will probably hear the usual, which is, "you're just one of those people who run slightly high". Also, the elevated cal started "before" I started the forteo, so they can't blame it on that either. So I'll have to wait and see what the answer is in a couple of weeks when I see the dr.
Do you know of any other things that cause this? Can I ask you why they took out 3 1/2 parathyroids? Can you have a problem with them that doesn't show up on ultra sounds and blood tests? I've had an ultra sound of my thyroid, not parathyroid, and they found 2 nodules, but decided to leave them for another 6 mos. they are on my carotid artery, but the artery doesn't show any blockages.
Good Luck...
Pam
jnld5
01-31-2007, 01:35 PM
I have a question and I don't know if anyone would know the answer. My brother died in his sleep in 1996 from "Complications of Hyperparathyroidism Due to a Parathyroid Adenoma". It was completely undetected and ruined all his organs till his heart couldn't take it and stopped (sleeping thank god). I was wondering if anybody knows how long he might have had it. How long would it take to get to that point? He told my Dad the day before that he '"just doesn't feel good" but he never went to the Doctor. Can it also have syptoms that arent very prevelent or are most cases very noticeable that something is very wrong. For him to go all the way to the end with it is the reason why the time factor drives me crazy. It seem like it would have been forever. Thank you :) Get your yearly check up!!
mo2willow
01-31-2007, 02:32 PM
Unfortunately, the symptoms can develop very slowly, so a person might not notice them. In my case, I didn't notice it at all. I had an annual physical, including blood work, and they found that the calcium levels in my blood were too high, leading them to the diagnosis. I was monitored for 2 years by an endocrinologist, and it wasn't until by calcium levels passed the "borderline" level that they decided to operate. I never really felt bad, but definately noticed a difference after the tumor was removed. So, yes he could have had it for years. Especially if he didn't go to the doctors regularly.