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Old 03-06-2008, 09:15 AM   #1
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Post Parathyroid /High Calcium levels- anyone suffering with this

I was diagnosed 4 years ago with high calcium and ostepenia due to the above. Every bone in my body ached, I was extremely lethargic, depressed, developed kidney problems ( the calcium was being drawn from my bones and being put into my kidneys), severe constipation, constant UTI's etc. I was not permitted to use calcium. My area docs would not perform surgery as they said it was not the required protical. I researched and took matters into my own hands, as I could no longer function properly and did not want to develope severe osteoporosis or kidney failure. I went to Jefferson University, a teaching hospital which is know for it's endocrine surgery. I met with my new Endo and Endo Surgeon. I had surgery performed, 1 yr. ago, within a 1" incision, to remove a nodule the size of a walnut. I came home the same day. I was able to eat after surgery, had minimal soreness and within one week, I noticed the changes to my body. My calcium was back to normal. If anyone is fearing this surgery, or is experiencing these problems, please don't be afraid. It has saved my life, and all my physical problems are gone. I know take 2 calcium pills a day. I feel like my old self.

 
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Old 03-10-2008, 06:12 PM   #2
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Re: Parathyroid /High Calcium levels- anyone suffering with this

Hi, I have been suffering for over a year now. I have been diagnosed with several things including myofascial pain, hypoadrenalism, and raynaud's. But I still do not feel any better. I actually went to the doctor again last week because my heart just keeps going crazy once in awhile. She ran more tests and found out that my calcium is high. I had to go get a holter monitor on today for my heart and also get my ionized calcium checked and reg calcium and parathyroid hormone. I guess it is leaning towards hyperparathyroid.
I am so glad that you gave this post. What were all of your symptoms at the time when you were diagnosed? Did your heart get involved? And also what state is the hospital in that you had your surgery done?
Thanks.

 
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Old 03-12-2008, 01:08 AM   #3
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Re: Parathyroid /High Calcium levels- anyone suffering with this

Quote:
Originally Posted by birdleggs15 View Post
I was diagnosed 4 years ago with high calcium and ostepenia due to the above. Every bone in my body ached, I was extremely lethargic, depressed, developed kidney problems ( the calcium was being drawn from my bones and being put into my kidneys), severe constipation, constant UTI's etc. I was not permitted to use calcium. My area docs would not perform surgery as they said it was not the required protical. I researched and took matters into my own hands, as I could no longer function properly and did not want to develope severe osteoporosis or kidney failure. I went to Jefferson University, a teaching hospital which is know for it's endocrine surgery. I met with my new Endo and Endo Surgeon. I had surgery performed, 1 yr. ago, within a 1" incision, to remove a nodule the size of a walnut. I came home the same day. I was able to eat after surgery, had minimal soreness and within one week, I noticed the changes to my body. My calcium was back to normal. If anyone is fearing this surgery, or is experiencing these problems, please don't be afraid. It has saved my life, and all my physical problems are gone. I know take 2 calcium pills a day. I feel like my old self.
Is what you have hypoparathyroidism? I have been on forteo shots for 2 years and now am told that my parathyroid is not producing enough/not much at all of the hormone that I need. My Dr. is waiting on my bone density test to see what has happened with my bones this last year. The calcium in my blood? is higher than it should be.

Would appreciate your response.

Thanks

 
Old 03-12-2008, 01:12 AM   #4
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Re: Parathyroid /High Calcium levels- anyone suffering with this

After finishing 2 years of forteo, I am having problems with high calcium in my blood - Dr. hasn't decided what to do - is this hypoparathyroidism??

Would appreciate any help anyone can give me as I am not sure what Dr. will suggest and want to know of anyone else going through this.

Thanks

 
Old 03-12-2008, 07:33 AM   #5
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mmee HB User
Re: Parathyroid /High Calcium levels- anyone suffering with this

Hi,
When the calcium is higher than it should be in your blood, they look at hyperparathyroidism.
My understanding is that hypo is when the calcium level is lower than what it should be.

Just curious, what are the forteo shots? Some medications can make your blood calcium go higher, so they say. But I have been doing alot of research on Dr. Norman from Tampa, FL and he says that when your calcium level goes high it is usually your parathyroid (hyper). Also did you have a pth ran (parathyroid hormone) and an ionized calcium run? That may help too.

Let us know how you make out.

 
Old 03-12-2008, 09:28 PM   #6
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Re: Parathyroid /High Calcium levels- anyone suffering with this

Hi! I actually have hypoparathyroidism, which means my parathyroid gland is not telling my body to take calcium out of my bones. This means that I do not have enough calcium in my blood, so I take ca pills everyday along with a vit. d prescription to help my body absorb the ca.

I hope you feel better soon.
__________________
Polyglandular Autoimmune Syndrome
Addison's Disease
Hypoparathyroidism
Hashimoto's

 
Old 03-25-2008, 05:15 PM   #7
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mmee HB User
Re: Parathyroid /High Calcium levels- anyone suffering with this

sue64,
How are you doing now? Did you ever find anything out about your calcium?

 
Old 04-16-2008, 07:40 PM   #8
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Re: Parathyroid /High Calcium levels- anyone suffering with this

I am presently getting the necessary paper work and test done and am going to Dr. Jim Norman in Tampa for the surgery. If anyone has had the non invasive parathyroid surgery I would like to know how it went. My calcium is elevated and my PTH is very high. Thanks

 
Old 04-16-2008, 08:06 PM   #9
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Smile Re: Parathyroid /High Calcium levels- anyone suffering with this

2jen,
Have another post but saw your reply. How were you diagnosed with Hypoparathyroid?? Do you know what caused it?? I have all my symptoms on another post and have been deperately seeking a diagnosis....any help you can give me is greatly appreciated. My symptoms - severe fatigue, low PTH, low magnesium, low potassium ( at times) ,chest pain, tachycardia with anarrythmia ( for not physical reason, unknown source), muscle spasms/weakness, tremors at times, weight loss, no appetite. Also what is your treatment... I am on calcium, vitamin D, magnesium . Thanks.... good luck to all!!!

 
Old 04-17-2008, 07:15 AM   #10
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Re: Parathyroid /High Calcium levels- anyone suffering with this

hi tired47,
I just wanted to chime in, if you don't mind. Have you ever had your calcium checked? If so , what is it? I actually have all of the same symptoms as you except for the low pot, mag, and pth. I have had weight loss then gain and then loss again. And I have high and high normal calcium. It runs between 10.0 and 11.0.
Sorry to chime in, but I wanted to let you know that I have the same symptoms. They are driving me crazy too , and I am having a hard time getting diagnosed too.
mmee

Last edited by mmee; 04-17-2008 at 08:49 AM. Reason: to add on to the symptom list

 
Old 04-18-2008, 05:34 AM   #11
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Re: Parathyroid /High Calcium levels- anyone suffering with this

Hi Susan...

I had a parathyroidectomy a little over a month ago, and I am doing really well. My endo surgeon made a two inch incision at the base of my neck and used surgical glue to seal it, so my scar is already minimal. My neck was sore for about a week, and it took about two weeks to get all my energy back. (I think that was due to the anestesia.) I didn't lose my voice at all; I wasn't even slightly hoarse. I had to have more than my diseased parathyroid gland removed, because it was discovered during surgery that my tumor was not benign but cancerous. Statistacally speaking, you now don't have to worry about your tumor being cancerous, because I am the one case/year in America of parathyroid cancer! As I said, all is well, especially since the cancer didn't spread.

I was a very unusual case, because the only time my calcium levels and PTH were out of whack were at the time of diagnosis. Every lab, even the one taken five minutes before surgery, were in normal range. This is abnormal for benign tumors but really abnormal for malignant tumors. I always wanted to be special. Heh.

Good luck with your surgery. If your bones ache, I understand the pain resides in a matter of hours. I didn't have any symptoms, so I felt as well going in as I did coming out. (After my original diagnosis, I had two dexa scans spread a year apart, and they showed I had bone loss during that year. I didn't have any bone pain, fortunately.) If it wasn't for my PCP acknowledging that slightly abnormal calcium level, I would still unknowingly have cancer. Who knows what would have happened if it wasn't discovered when it was?

Good luck with the surgery! Eat ice cream if your throat hurts. A pint or two of Ben and Jerry's is a wonderful way to celebrate the ending of your disease. :-)

 
Old 04-18-2008, 06:38 AM   #12
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Re: Parathyroid /High Calcium levels- anyone suffering with this

I had my parathyroid removed by Jim Norman on 2/4/08, he also removed a large thyroid nodule and my left lobe of my thyroid. They are remarkable in the way they work everything out in Tampa. You will be so pleased. My scar is 1 inch and actually you can no longer see it. I had the usual discomfort and that was minimal. You are going to be so happy you chose them. Anyways best of luck! The best part for me after 7 years or more of suffering with bone pain, I am pain FREE! Pamlr

PS I would choose not to stay in Ybor city if it were me again.

 
Old 04-18-2008, 08:55 AM   #13
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Smile Re: Parathyroid /High Calcium levels- anyone suffering with this

mmee,
Yes had my levels checked... here they are
calcium ionized, serum- 5.1 ( normal 4.5-5.6)
PTH 9, ( normal 12-65)
TSH 1.4 ( normal .35-5.5)
magnesium 2. ( normal 1.6-2.5)
Phosphorus 3.5 ( normal 2.5-4.5)
Vitamin D 52 ( normal 32-100)

I go back Monday to Endo. I am eager to see what he says about the low PTH... he said everything was normal and then I noticed the low PTH when I asked for copy of labwork. If he does not address this issue ( this is the 2nd time it was low. Last time he repeated it and said it was just a fluke) I will change endo dr. Wish me luck... and anyone with advice I am happy to hear it.

 
Old 04-18-2008, 09:35 AM   #14
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Re: Parathyroid /High Calcium levels- anyone suffering with this

hi pamlr,
That is wonderful. I am glad that you no longer have bone pain that is wonderful. If it turns out that I do have hyperparathyroid, then I would definately go to Dr. Norman also. I have read so many wonderful things. Keep us posted on your recovery.


hi tired47,
My aunt has hypoparathyroid and I wish you lots of luck if it turns out that is what you have. I really don't know much about hypo, but I wish you lots of luck. It is so difficult to get a diagnosis sometimes, I know. Good luck on getting a diagnosis.

mmee

 
Old 05-13-2008, 10:32 AM   #15
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Re: Parathyroid /High Calcium levels- anyone suffering with this

Quote:
Originally Posted by susan12 View Post
I am presently getting the necessary paper work and test done and am going to Dr. Jim Norman in Tampa for the surgery. If anyone has had the non invasive parathyroid surgery I would like to know how it went. My calcium is elevated and my PTH is very high. Thanks
Hi Susan, Have you been to Tampa yet for your surgery? Just wondering how it went if you have. I had surgery there and was very impressed. 2/4/08 had my left lobe of thyroid removed and one parathyroid gland. It is good to feel better. Let me know how you are doing.

Pamlr

 
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