Scary reading, but thank you so much to the people in this thread - it's almost impossible to find information on post-parathyroidectomy symptoms. I had a parathyroidectomy five days ago - didn't expect a miracle cure because I'd researched a lot, and the few real people I could find who had parathyroid disease said it was taking months to years to get better.
So far, some of the really bad bone pain has gone away, so that's to the good - I hope it doesn't come back (I have fibromyalgia, RA, and got osteoporosis from the PTH disease, so....). I'm still tired (I think that's normal), and spacey as hell.
The cognitive deficits are scaring me, because I used to be a writer. But my brain went sometime around the time this mess started about five years ago - first my mitral valve prolapse got worse, then I kept getting rushed to the casualty ward for heart arrhythmias and muscles spasms so bad they were almost seizures, a good day was one when I could manage a bath (I had that little energy), and my concentration, memory and general cognitive ability - gone for a song like old Hong Kong. Then I went diabetic, though that's controllable by diet. I also gained 30 lbs, which is weird because even though I wasn't exercising, I was always too sick to eat. Thank God I didn't go hypertensive, because I know that is often not resolved from surgery.
The tumour wasn't very big, and it looks like I got it and my initial symptoms around the same time. I know to be patient, but I hope I get better. I'm taking 4 citricals a day ATM, plus time-release morphine when I need it for the fibro and RA, and I have some xanax for sleeping, though I've had a couple panic attacks since the surgery and I seem to need it more for that.
Fingers crossed we all get better. And to the lady above me - you might want to also get bone density scans for osteoporosis - I'm only 47, and I got osteoporosis from this crud, so it's definitely a real worry.
So far I think I'm feeling slightly better than before, I just hope it continues. I think I couldn't stand to feel worse than I did. I'm not feeling ten years younger or like a new person by any means, though! I do think that given all the damage that excess PTH and especially excess calcium can do to the body, it's probably not realistic to hope everything will rebalance overnight. For some lucky folks maybe it does - for the rest of us, I suspect it's a very long haul.
If anyone else wants to update in this thread, it'd be great. I do feel pretty scared and alone in all this - I had to come to America for surgery and am staying here with friends because they almost never see parathyroid disease in my country, so no MIRP, just the old style operation and a surgeon who has done only 29 of them in 45 years. I am glad I went to Florida on that account, because I think they wouldn't even have found the tumour at home, but it is kinda spooky when you get a disease nobody's ever heard of or knows anything about.
So far, some of the really bad bone pain has gone away, so that's to the good - I hope it doesn't come back (I have fibromyalgia, RA, and got osteoporosis from the PTH disease, so....). I'm still tired (I think that's normal), and spacey as hell.
The cognitive deficits are scaring me, because I used to be a writer. But my brain went sometime around the time this mess started about five years ago - first my mitral valve prolapse got worse, then I kept getting rushed to the casualty ward for heart arrhythmias and muscles spasms so bad they were almost seizures, a good day was one when I could manage a bath (I had that little energy), and my concentration, memory and general cognitive ability - gone for a song like old Hong Kong. Then I went diabetic, though that's controllable by diet. I also gained 30 lbs, which is weird because even though I wasn't exercising, I was always too sick to eat. Thank God I didn't go hypertensive, because I know that is often not resolved from surgery.
The tumour wasn't very big, and it looks like I got it and my initial symptoms around the same time. I know to be patient, but I hope I get better. I'm taking 4 citricals a day ATM, plus time-release morphine when I need it for the fibro and RA, and I have some xanax for sleeping, though I've had a couple panic attacks since the surgery and I seem to need it more for that.
Fingers crossed we all get better. And to the lady above me - you might want to also get bone density scans for osteoporosis - I'm only 47, and I got osteoporosis from this crud, so it's definitely a real worry.
So far I think I'm feeling slightly better than before, I just hope it continues. I think I couldn't stand to feel worse than I did. I'm not feeling ten years younger or like a new person by any means, though! I do think that given all the damage that excess PTH and especially excess calcium can do to the body, it's probably not realistic to hope everything will rebalance overnight. For some lucky folks maybe it does - for the rest of us, I suspect it's a very long haul.
If anyone else wants to update in this thread, it'd be great. I do feel pretty scared and alone in all this - I had to come to America for surgery and am staying here with friends because they almost never see parathyroid disease in my country, so no MIRP, just the old style operation and a surgeon who has done only 29 of them in 45 years. I am glad I went to Florida on that account, because I think they wouldn't even have found the tumour at home, but it is kinda spooky when you get a disease nobody's ever heard of or knows anything about.
My mom (51 yrs old) had a surgery done on her throat where they removed all 4 parathyroids and a nodule.Since her operation she has had problems with numbness and tingling.She has seen her surgeon and has been to her family doctor and no one seems to be able to give her answers as to why she feels the way she does.Has anyone else had this problem after parathyroid surgery??? My mom is at her whits end ,as time goes by she is losing more and more of her feeling in her face ,arms,legs and other areas .This is really starting to concern the family and no one knows what to do .Doctors have been NO help.
Usually the numbness, tingling, and muscle cramping is from low calcium - it happens to a lot of people post parathyroid surgery, especially if they aren't taking supplemental calcium - is she taking some kind of calcium, Vit D, and magnesium supplements? I would think that with all four glands gone, they'd have to have left at least part of a one so she'd have some calcium control mechanism - did they? And if not they'd have HAD to put her on a lot of supplements. Even if they did leave a half gland she'd likely still need supplements but not as many to prevent hyp0para and hyp0calcaemia.
Also, it's possible to go hyperthyroid as a reaction to parathyroid sugery, though usually that's self-limiting - but can be serious. Don't know if it'd cause numbness and tingling though - if it's parathyroid related and those symptoms, I'd think it's lack of calcium.
It could be other stuff but it's worth getting checked and at least bringing up those possibilities. With all four parathyroids gone, plus a thyroid nodule, I'd assume one or the other has gone into 'misfire' mode.
Good luck!
Also, it's possible to go hyperthyroid as a reaction to parathyroid sugery, though usually that's self-limiting - but can be serious. Don't know if it'd cause numbness and tingling though - if it's parathyroid related and those symptoms, I'd think it's lack of calcium.
It could be other stuff but it's worth getting checked and at least bringing up those possibilities. With all four parathyroids gone, plus a thyroid nodule, I'd assume one or the other has gone into 'misfire' mode.
Good luck!
Sorry I should have been more clear .She had all 4 parathyroids removed and a nodule and they stated that they put 2 "new" parathyroids back in .I am a little confused to that part seeing that I have not seen any info about doing a transplant for parathyroids.I myself have a thyroid disease so I know a bit about all this .I told her to take calcium and vit D and she did for a bit but when she was told that they didnt know what was wrong with her and that it would probably go away and as well was told that her levels were fine and not to worry about it she stopped taking the calcium and vit D. I noticed that a lot of family doctors don't know much about this topic and have tried to get my mom to understand that but have had no luck :-(
Ouch. Unless she had a transplant from an identical twin or from her own parathyroid tissue, I have no idea what they did. Usually 3-1/2 glands are removed when it's hyperplasia (4-gland disease). Did she get hyperparathyroidism spontaneously, or was it from renal failure?
How long ago was her surgery? If you're in a small country or a small town, you might want to get in touch with Dr Norman in Tampa - he is easy to find on the web (I don't know if the rules here permit posting his site, but a search for his name and parathyroid will turn it up), and he does respond to e-mails. He might have a clue as to what happened, but I sure don't.
I was lucky - I live in a small country, but have a really with-it GP. The endocrinologist, OTOH, simply thought that all parathyroid disease was a benign anatomical quirk - and this was the person who was supposed to have a clue.
Most doctors don't see a lot of this, in other words (my GP had seen two cases only before me, and I think that's not too far off the norm even in a larger country) - it might be a good idea to get an expert opinion.
I do hope it gets resolved. I know how frustrating this can be, and I can't imagine what you and your mother must be going through at this point.
How long ago was her surgery? If you're in a small country or a small town, you might want to get in touch with Dr Norman in Tampa - he is easy to find on the web (I don't know if the rules here permit posting his site, but a search for his name and parathyroid will turn it up), and he does respond to e-mails. He might have a clue as to what happened, but I sure don't.
I was lucky - I live in a small country, but have a really with-it GP. The endocrinologist, OTOH, simply thought that all parathyroid disease was a benign anatomical quirk - and this was the person who was supposed to have a clue.
Most doctors don't see a lot of this, in other words (my GP had seen two cases only before me, and I think that's not too far off the norm even in a larger country) - it might be a good idea to get an expert opinion.
I do hope it gets resolved. I know how frustrating this can be, and I can't imagine what you and your mother must be going through at this point.
ON ANOTHER WEBSITE I READ: DON'T BE TEMPTED TO ASK YOUR DOCTOR TOO MUCH TOO SOON BECAUSE AFTER THE SURGERY HIGH CALCIUM AND PARATHYROID HORMONE HAVE COMPROMISED THE FUNCTION OF MANY DIFFERENT SYSTEMS AND TISSUES IN THE BODY. IN SOME EXPERIENCES SOME SYMPTOMS RESOLVED WITHIN MONTHS, OTHERS, SUCH AS NEUROMUSCULAR WEAKNESS, FLEXOR TENOSYNOVITIS IN THE HANDS, AND OTHER RESULTANT JOINT PROBLEMS, TOOK SEVERAL YEARS. IN THE EARLY DAYS YOUR BRAIN MAY STILL BE COMPROMISED. AFTER A SUCCESSFUL PTX, BLOOD CALCIUM AND PTH RETURN TO NORMAL, 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 2 SUBSTANCES. THEREIN MAY LIE THE ANSWER TO THE VARIABILITY OF RECOVERY...WHO KNOWS HOW LONG THE DISEASE HAS BEEN PRESENT.
I had my surgery in Tampa by dr. Norman in November. He said I probably had hyperparithroidism for the last ten years. It really took a toll on my body. The last two years were the worst. My symptoms were brain fog, bad bone pain and weight loss. Well, after the surgery, my brain fog is better, but I am still losing weight. My bone pain is still here, worse than ever. I am not able to work and at age 58, looking at disibility. I am on pain meds everyday now. They say that after one has surgery, they get beter. Well I am still waiting for a full recovery. Dr says it could take up to 3 years.
ggo :'(
ggo :'(
I HAVE NO SYMPTOMS OF HYPERPARATHOIDISM, BUT MY ENDOCRINOLOGIST DID A SESTAMIBI SCAN AND FOUND A PARATHYROID ADENOMA...MY BLOOD PRESSURE IS NORMAL...I HAVE NO BONE OR JOINT PAIN...SOMETIMES I FEEL LIKE I MIGHT BE GETTING A KIDNEY STONE...I HAVE NO HEADACHES, I'M NOT TIRED...MY MEMORY IS BETTER THAN IT'S EVER BEEN...
BUT MY TSH IS SLIGHTLY ELEVATED, MY CALCIUM IS ELEVATED, MY PTH IS ELEVATED....
SHOULD I JUST HAVE LABS EVERY 6 MONTHS TO MONITOR MY SITUATION? THANKS - WANTING TO HEAL
BUT MY TSH IS SLIGHTLY ELEVATED, MY CALCIUM IS ELEVATED, MY PTH IS ELEVATED....
SHOULD I JUST HAVE LABS EVERY 6 MONTHS TO MONITOR MY SITUATION? THANKS - WANTING TO HEAL
Hyperparathyroidism gets worse. It doesn't get better. Two prognosticators for a good recovery are low adenoma weight (a small tumour), and normal blood pressure.
I don't mean to scare you, but if you're hyperpara your blood pressure could go up at any time - and that often can't be resolved by surgery. You're also losing calcium out of your bones whether you feel it or not, risking heart disease, kidney stones, and possibly even stroke if your calcium goes really high.
IOW, it's a serious illness, and it will not go away or get better unless you have the tumour taken out. It may or may not take you a long time to recover, but if you don't have it taken care of it will get worse.
It sucks, I know. But I'm younger than you and I got osteoporosis, left ventricular hypertrophy, and salivary gland stones from it, amongst other things - it's very likely it caused/contributed to my diabetes.
I'm not 100% yet, though I have had some improvements over the past six weeks since my surgery - though it will probably be a long time to get completely well - and I was one of the lucky ones despite being symptomatic - small tumour and low blood pressure.
Talk it over with a good surgeon - there are quite a few in the States who deal with this. For your own sake - you're the only one who can make the decision.
I don't mean to scare you, but if you're hyperpara your blood pressure could go up at any time - and that often can't be resolved by surgery. You're also losing calcium out of your bones whether you feel it or not, risking heart disease, kidney stones, and possibly even stroke if your calcium goes really high.
IOW, it's a serious illness, and it will not go away or get better unless you have the tumour taken out. It may or may not take you a long time to recover, but if you don't have it taken care of it will get worse.
It sucks, I know. But I'm younger than you and I got osteoporosis, left ventricular hypertrophy, and salivary gland stones from it, amongst other things - it's very likely it caused/contributed to my diabetes.
I'm not 100% yet, though I have had some improvements over the past six weeks since my surgery - though it will probably be a long time to get completely well - and I was one of the lucky ones despite being symptomatic - small tumour and low blood pressure.
Talk it over with a good surgeon - there are quite a few in the States who deal with this. For your own sake - you're the only one who can make the decision.
THANKS FOR YOUR RESPONSE...I AM GETTING ANOTHER 24 HOUR CALCIUM URINE, PHOSPHATE, CMP, VITAMIN D 25-DIHYDROXY AND PTH INTACT...IF THESE ARE STILL HIGH, I WILL GO AHEAD WITH THE SURGERY...
Dr. Norman also did my surgery in October 2007. He pulled out a double adenoma. I was really sick....neuromuscular weakness (felt like rubbery legs when I moved around), fatigue, muscle aches and pains. Weeks after the surgery I was doing pretty good. Not 100% but maybe 80%. This lasted 6 months. The last ten days, the neuromuscular weakness has been plaguing me badly. ........so, it seems from what I'm reading, not all people have such a great recovery as is posted on Dr. Norman's website. Those people must be the lucky ones.
I too am waiting to heal! Anyone else out there waiting to heal???
I too am waiting to heal! Anyone else out there waiting to heal???
I had surgery on 03/25/08 in Florida. I felt good for the first few weeks and now i have no energy. i had hyperplasia with three tumors removed and one thyroid nodule. I had lab work done this week and hope to get good results. I think I had the disease for at least 10 years and I guess my question is am I expecting too much too soon. The nurse says give myself three months. You read all the wonderful stories on the web site of total recovery and I want mine too...lol..I am taking calcium and mutiple vitamin daily. Any ideas would be greatly appreciated. Thanks
Don't waste your time and money on all those tests. If you have high calcium and high PTH you have hyperparathyroidism. Find a good surgeon and don't waste time like I did. My experience in Florida was great and I would do it again even though i am not where I want to be health wise yet. They are the best at what they do. This disease will never go away or get better. Get surgery, but PLEASE be careful what surgeon you pick.
How are you feeling now?
My surgery was a double adenoma. Dr. Norman said the remaining 2 glands were ok. Although, a month later I recieved the pathologist report that said a 3rd gland was "slightly enlarged". Now I'm wondering about this. What should I be taking as far as calcium mg per day? What about magnesium? Any other supplements?