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Old 11-04-2010, 01:34 PM   #1
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Ann 2010 HB User
Unhappy I have a Parathyroid Question. My 3rd one is going out, will be 3rd surgery.

I had a paratyroid removed when I was 25 in 2001. My Calcium was high as was my Parathyroid. As soon as the Dr. removed it my levels went back to normal. He said it was a pretty good sized tumor. In 2005 I had to have another one of my Parathyroids removed. Level went back to normal as soon as it as taken out. My Dr. said I was very very very rare! Now in 2010. My Paratyroid is getting to be high. My calcium is a little high. I went back to my Dr. and he said I was a case for the books. He said it looked like I had another one going out. This time he has been hesitent on taking it out. He said that the 1st one was so big it really could have been 2 together. He said it was very hard to tell. So it is possible it is really my last one going out. He had me wait 6 months and come back. I waited 6 months and my levels were a little bit higher but calcium still border line. He said for me to wait another 6 months. His reasoning was that if he really was having to take out my last one that having no Parathyroids is a serious condition. I'd like to know how serious. Is there anyone out there like me or anyone who has had all 4 taken out. What are your effects from having all 4 gone? I"m really worried!!
I do have the best Dr. He is head of Baylor College of Medicine for the Endo. department. My scare is almost invisible, and I've had it done twice.

Last edited by Ann 2010; 11-04-2010 at 01:38 PM. Reason: spelling

 
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Old 01-27-2011, 11:48 AM   #2
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Re: I have a Parathyroid Question. My 3rd one is going out, will be 3rd surgery.

I hope your feeling well.....according to the doctors I've been seeing, they've told me that we have to have a least 1/4 of the parathyroid gland in our body. I've been diagnosed with having hyperparathyroidism for 2 1/2yrs and had 2 surgeries thus far and my third one in 3 weeks. With my case, the first surgery I had was to remove an adenoma on the lower right side. The second one was to remove the top left one. Of course the doctor I was seeing said that I was lucky and it was really rare to have 2 surgeries. The symptoms can back in less than a week after the second surgery so I went to 4 other doctors and thought the one I'm seeing now was the right one for me. His plan is to have a third surgery removing the top right and the lower left (the ones that were left) and to implant 1/4 of the gland into my arm. I've had all the tests done (Biopsy/ultrasounds/cat scans/mri/blood tests). My surgery is in 3wks so I'll keep you posted.

 
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Old 01-28-2011, 07:50 AM   #3
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Ann 2010 HB User
Re: I have a Parathyroid Question. My 3rd one is going out, will be 3rd surgery.

Yes please let me know how it goes! I pray every thing will work out. I knew about only needing a 1/4 but I just hate to have a third and they don't even know if I have 2 left or 1 since one was quit big, he said it could have been 2 together! I have to go back in a month to do blood work again and keep an eye on it. :-( Never fun!

 
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Old 03-12-2011, 10:18 AM   #4
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Smile Re: I have a Parathyroid Question. My 3rd one is going out, will be 3rd surgery.

Hello Ann 2010 and Tatiana01,

I have been looking for posts regarding increased parathyroid and calcium levels, and I was so happy to find this board.

This is my story. I am a 63-year old female and my parathyroid and calcium levels have been elevated for several years. My endocrinologist will probably be sending me to a surgeon for removal of several or most of my parathyroids. My current PTH level is 124 PG/ML and my calcium has been as high as 11.0 MG/DL. A parathyroid scan was performed last year, but there was no evidence of any tumors. I presently have chronic kidney disease, stage 4. My right kidney was removed last year because of renal cell carcinoma (cancer). Thanks to early detection, I am now cancer free.

I also was told by my doctor that they can remove up to 3 parathyroids and part of the 4th parathyroid and implant 1/4 of the remaining gland in the arm. I found that incredible and never totally believed that possible until I read your posts, thank you for making that believable. It really helps to be able to share our experiences.

I will keep you both in my thoughts and wish you good health.

Grayfox

 
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Old 05-19-2012, 07:13 AM   #5
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Re: I have a Parathyroid Question. My 3rd one is going out, will be 3rd surgery.

So glad to have found this thread. I had 3 1/2 of my parathyroids removed in2001. I have three other family members whom also have had surgery. My mom had one taken as well as another sister had one taken, (her levels have not returned to normal either). My other sister whom also had thyroid problems had all four removed, ( they didn't mean to take all four) something to do with her thyroid conditon. So she had to take special medicine to correct the fact no parathyroids. She just pass away on April 21 of this yr. They were un able to find a cause at auptopsy. We are still awaiting results toxic, etc. She did always say that her hands were getting tingling and crampy and curl up, meaning that her calcium was going too low. Makes us wonder that she might have gone into a hypocalcemic shock. I"m going to my Endo on thursday because my numbers, (calcium) have been reading consistently at around 10.9 and I'm expericneing horrible abdodminal pain upper right, swelling hands, leg cramps, headaches everyday. I"m experience horrible brain fog , word recall. Can't even remember co-workers names sometimes. I'm really scared that she is going to tell me surgery. I only have 1/2 left. I will not let them take that. After what happened to my sister. Maybe 1/4. I don't even know if 1/4 of a parathyroid is enough to function. What do you all think? Scared and confused

 
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