parathyroidectomy side effects

nurse/patient · Newbie Joined: 04 Mar 2008 Posts: 1

I had one parathyroid adenoma removed in September, 2006. I read the parathyroid.com description that said I would feel better immediately. Well, I did. Then about two days later all the symptoms came back: the terrible bone pain, the memory problems, the depression. The worst pain of all was in the bottom of my feet. It made it hard to walk or exercise. I went from doctor to doctor. Four month after my surgery I even went to the endocrinology clinic at UCSan Francisco. Nobody could tell me what was wrong. My calcium and PTH were normal but Vitamin D3 was low so I started on supplements.
Finally, in January of this year, I went to a doctor who is specializing in anti-aging and he measured multiple hormones in the blood and in a 24 hour urine specimen. He wants his patients at "optimal levels" (not the laboratory "reference ranges"). Now I am taking several different meds (Armour thyroid, methylprednisolone, prometium,) and finally I am getting back to feeling normal. Have lost 20lbs too. (You don't feel bad because you gained weight...you gained weight because you feel bad. The bone pain and joint pain makes it so difficult to exercise, so when you slow down and don't move, you gain weight! No surprise there.)
Remember how bad you felt when your parathyroid hormone was out of whack? Well, hormones don't operate in a vacuum. When one is out of whack, you get a domino effect. Doctors don't give enough respect to hormones. Find a doctor who is specializing in anti-aging (they have fellowships in this stuff so go to a teaching hospital if you have to). Have your doctors log on to this site where so many people have the same symptoms and then ask your doctor to explain how it's still all in your head. I mean are we all having a group hallucination or something?
By the way, it turns out the pain in my feet was plantar fasciitis and a podiatrist gave me some cortisone injections in my feet and for the first time in two years they no longer hurt. Vitamin D was still low after one year of supplementation so I am now taking a liquid Vitamin D3 and will check again in a couple of months. Bone pain/achiness is completely gone. Fatigue is still there but diminishing. Sleep is improving. Memory still a problem but better if I don't "multi-task". Hard to do, since I am a nurse, but since memory is a problem I am no longer a bedside nurse and now work a desk job. My faith in doctors and the medical establishment in general has been shaken. As a nurse, I have had a hard time navigating this system and getting my needs met. I can't imagine what it would be like for someone who doesn't know how the system works.

WANTING TO HEAL · Newbie Joined: 01 Mar 2008 Posts: 20

I am anxious to hear how you are doing daily, is this something you deal with on a daily basis, or does it happen now and then? I have been to doctors, and am told the same thing; it's anxiety. As I am sure you have discovered, not many know anything about parathyroid symptoms, side effects, etc. I have to say that my faith in the medical community has really taken a nose dive ever since this whole thing started in July 2006. We hold doctors in a higher regard and expect them to help us as that is what we pay them for. When they throw their hands in the air and say "I dunno", it scares me. In any case, I am axiously waiting for your reply.

I THINK I'M GOING TO HAVE MY DOCTOR MONITOR MY CALCIUM LEVEL, 'VITAMIN D' LEVEL, 24 HOUR URINE, AND XRAY ME FOR KIDNEY STONES EVERY 4 MONTHS...THE ONLY SYMPTOM I'M FEELING IS FATIGUED, BUT I'M 56 YEARS OLD...IF YOU GET UP AT 3 IN THE MORNING GET HOME AT 3 IN THE AFTERNOON, YOU'D FEEL FATIGUED TOO...I'M GOING TO POSTPONE THE SURGERY AS LONG AS I CAN...I HAD A TOTAL HYSTERECTOMY AND AM NOT ON ANY HORMONE REPLACEMENT...I'M GOING TO SEE WHAT MY DOC ENDOCRINE DOC OR GYN DOC SUGGEST...

WANTING TO HEAL · Newbie Joined: 01 Mar 2008 Posts: 20

I have to say that my faith in the medical community has really taken a nose dive ever since this whole thing started in July 2006. We hold doctors in a higher regard and expect them to help us as that is what we pay them for. When they throw their hands in the air and say "I dunno", it scares me. In any case, I am axiously waiting for your reply.

THINK I'M GOING TO HAVE MY DOCTOR MONITOR MY CALCIUM LEVEL, 'VITAMIN D' LEVEL, 24 HOUR URINE, AND XRAY ME FOR KIDNEY STONES EVERY 4 MONTHS...THE ONLY SYMPTOM I'M FEELING IS FATIGUED, BUT I'M 56 YEARS OLD...IF YOU GET UP AT 3 IN THE MORNING GET HOME AT 3 IN THE AFTERNOON, YOU'D FEEL FATIGUED TOO...I'M GOING TO POSTPONE THE SURGERY AS LONG AS I CAN...I HAD A TOTAL HYSTERECTOMY AND AM NOT ON ANY HORMONE REPLACEMENT...I'M GOING TO SEE WHAT MY DOC ENDOCRINE DOC OR GYN DOC SUGGEST...

WANTING TO HEAL · Newbie Joined: 01 Mar 2008 Posts: 20

But I have to be honest and tell you that there are just as many days that I wake up and say "this bites, why is this happening to me?!". I am anxious to hear how you are doing daily, is this something you deal with on a daily basis, or does it happen now and then? I have been to doctors, and am told the same thing; it's anxiety. As I am sure you have discovered, not many know anything about parathyroid symptoms, side effects, etc. I have to say that my faith in the medical community has really taken a nose dive ever since this whole thing started in July 2006. We hold doctors in a higher regard and expect them to help us as that is what we pay them for. When they throw their hands in the air and say "I dunno", it scares me. In any case, I am axiously waiting for your reply

WANTING TO HEAL · Newbie Joined: 01 Mar 2008 Posts: 20

THINK I'M GOING TO HAVE MY DOCTOR MONITOR MY CALCIUM LEVEL, 'VITAMIN D' LEVEL, 24 HOUR URINE, AND XRAY ME FOR KIDNEY STONES EVERY 4 MONTHS...THE ONLY SYMPTOM I'M FEELING IS FATIGUED, BUT I'M 56 YEARS OLD...IF YOU GET UP AT 3 IN THE MORNING GET HOME AT 3 YOU'D FEEL FATIGUED TOO...I THINK I'M GOING TO POSTPONE THE SURGERY AS LONG AS I CAN...I HAD A TOTAL HYSTERECTOMY AND AM NOT ON ANY HORMONE REPLACEMENT...I'M GOING TO SEE WHAT MY ENDOCRINE DOC OR GYN DOC SUGGEST...HE'S THE ONE WHO SAID WE COULD MONITOR OR GO AHEAD WITH THE SURGERY...MY CALCIUM IS ONLY 10.8, BUT MY PTH IS 150...

Leida · Newbie Joined: 22 Mar 2008 Posts: 21

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.

Concerned Daughter31 · Newbie Joined: 24 Mar 2008 Posts: 5

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.

Leida · Newbie Joined: 22 Mar 2008 Posts: 21

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!

Concerned Daughter31 · Newbie Joined: 24 Mar 2008 Posts: 5

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 Sad

Leida · Newbie Joined: 22 Mar 2008 Posts: 21

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.

parathyroidectomy side effects

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