Post Parathyroidectomy Problems

Bristol,
I had parathyroid surgery 1 month ago. Lots of symptoms since but anxiety and panic are the worst....did you get over them?

Thanks, Tawa

Wildcherry, I share your experience! Both surgeon and endo think I am a lab report, give me a big smile and say, "You're CURED!" Labs are great, but I feel at least 90. I ache all over. My feet cramp so badly sometimes my big toe sticks straight up. Legs cramp so much I can hardly fall asleep at night. I run a biz, and it's now really hard to focus to get my work done. I feel like my IQ dropped about 20 points. I am 9 months post-surgery and have improved very little. Bone pain has lessened, but that is the only improvement since a couple of weeks after surgery. NO energy. The only thing that helps cramping and numbness is liquid Cal-Mag+(D) but my GP is concerned that I have to take so much I may cause myself kidney stones again. Frankly, I felt better before the surgery and am not at all sure I would have done it if I had known the outcome. Funny how docs never tell you the down side of what they are recommending, nor the fact that you have to be made of money to continue to deal with the outcomes. I am not, so the financial stress has not helped. I used to be known for my high happiness level. No more. I'm old and bummed. Guess I'm saying, don't expect help from the medical community.

I know this post is from a long time ago but I'm hoping you can help. My sister has a parathyroidectomy in October 2014 and she is suffering from memory loss and exhaustion- started a few months after the surgery. Did you find something that helped you?

I know this post is from a long time ago but I'm hoping you can help. My sister has a parathyroidectomy in October 2014 and she is suffering from memory loss and exhaustion- started a few months after the surgery. Did you find something that helped you?

Hi Carrie, I don't believe the originator is any longer on here but I'm hoping you are. I had surgery Feb 4th with 1 adenoma removed. Within two weeks of the surgery I noticed a drastic decrease in my energy level. Both surgeon and now endo as of yesterday seem to have no answers other than, "energy levels typically go up, not down". I've been back to work for two weeks now and I was able to function better prior to surgery than after. All labs are fine like everyone else reports, I'm not even on calcium any longer as there was no need. A lot of what I read said 3-6 months before you see a real improvement but from what I've been reading lately I'm finding this isn't the case. Has your sister found any relief and if so how?

I had parathyroid tumor removed Feb. 2012, it was HUGE (the size of my THUMB) it is now 2016, I'm 57 yrs. old, and had been forced to remain undiagnosed and untreated since 2003, when my calcium was 11.3. My bones ache SO bad, my body vibrates from the very core, to the point of shaking (it's an internal bone thing). My muscles are twitching, my face twitched daily for the 1st year (after surgery) and to this day. I threw caution to the wind, and totally stopped taking calcium, then I became constipated! Trying to regulate, and use laxatives/stool softeners/fiber etc. added magnesium! Added Vitamin C, take D-3 (5,000 IU), just about every day, sometimes, I just don't feel like it! Depressed, annoyed, tired, and just want the "Miracle cure" everyone else talks about having. Was told I was Type 2 Diabetic, and use daily injections, thought my body would adjust? Lost weight, and have recently regained, and not liking how old I feel (my mother is 80 and has more energy)! Have had other surgeries in the last 4 yrs. and wonder if it has been a toll on my body, to have to go through? Other tumors (back), hand, etc. Even went to the extreme and had breast reduction surgery to help neck and back pain, guess what, it is still there, now my entire ribs ache from being cut through to remove my huge breasts! Ouch! I don't recommend doing this. Out of desperation, I was motivated, to just want to feel better. They think, once you are done with surgery, you are cured? Think again, the healing can ONLY just BEGIN, after all of those years, untreated, you are in a period, of depletion! Even "Normal" (calcium) is too low for your body to adjust too! Think about that, for a moment, and then, understand, why, "Normal" isn't "normal" FOR you? You have been SO FAR from normal, you can't adjust to a drop in calcium, even though they SAY, all labs look great! You DON'T feel great, and you aren't ready for cartwheels and celebrating. The Life has been sucked out of you, and it will take more than waking from anesthesia, to SEE the wonders of the "Miracle" cure and evidence, of okay, I might have an "Okay" day, here and there? Mostly, it sucks! Wish they would BE honest about that! I feel lied to, ignored, and brushed over. If this is such a rare disease, do Dr's just want NO part of it? Dr. Norman, is a brilliant surgeon, and I wish I could have been diagnosed and had my surgery sooner, but, the powers that be, wanted me to die from this, rather than allow me to have any quality of Life, and I'm SO exhausted, from the emotional turmoil, of fighting for healthcare, during a time where if I came from another country, I'd BE handed benefits, in a heartbeat. Dr. Norman and Dr. Politz understand the seriousness of this condition, and I'd recommend them, highly. Don't wait, as the regular Dr.'s say... (wait FOR what?), a train to hit me, because that is what is feels like! It feels like that everyday. I think too much damage had taken place, while they waited? Now, I wait, to get to the other side, and know true health, because, I feel like the stuffing has been yanked right out of me!

My husband had a parathyroidectomy nearly 2 years ago, and he is now a COMPLETELY different person. This is the letter I wrote to his doctor following the surgery:

You performed a parathyroidectomy on my husband in 2015 due to hyperparathyroidism. Both you and his nephrologist recommended the surgery, explaining that without it he would end up with severe osteoporosis, worsening kidney/heart function, and a shortened life span. You said that he would feel “so much better” afterwards and that it would change his life.
Following the surgery, he was hospitalized for a week for severe hypocalcemia, and then again later for hypercalcemia, severe gout, and kidney failure. After that, he was paranoid about his calcium levels, constantly chewing Tums if he thought it was low and freaking out if he thought he had “overshot”.
I want to let you know that you were right about two things. First, the parathyroidectomy normalized his PTH levels, and eventually his calcium, which his nephrologist says is at a normal level now.
The second is that it DID change his life. It changed our family’s life. He is a completely different person now. Before the surgery, despite his medical conditions, he was positive, loving, happy, and kind. We spent a lot of time with our 10-year-old daughter riding bikes, fishing, going to community events, working in our yard together, talking… We were SO happy, and he would often tell me how happy he was.
Now he is the most negative, unhappy, agitated, angry person I know. He is not physically violent, but he will go from completely normal to a state of complete RAGE in a moment. His eyes will bulge out and turn blood red, he breaks out in a profuse sweat, and then he stays in bed for days as if he is exhausted, and refuses to speak to either of us. He gets angry over insignificant things, such as barking dogs and drivers that do not signal fast enough. He gets angry while watching football, the news, or random TV shows and yells at the TV. There have been times when he goes to bed seemingly happy and normal and then wakes up at 6 a.m. the next morning in a rage for no apparent reason. He has not spoken to his siblings in over six months, and since I do not have any family, we are completely isolated and alone now. We walk on eggshells around him, but even if we have a period of two or three weeks when he seems to be not so angry and hostile, that next round of rage and hatefulness is right around the corner. He is no longer kind or loving, and he has no compassion or regard for anyone other than himself.
While our daughter understands that he is sick, and that his behavior is not his fault, this has been EXTREMELY hard on her. She tells me all the time that she “wants her old daddy back”. I tell her that he will get better eventually, but honestly, I do not really believe that myself. I vowed “in sickness and in health” and “for better or worse”, and that is a vow I intend to keep, whether he is the same person or not. But our lives are completely different now, and there seems to be nothing we can do about it. I cannot (nor do I wish to) make health decisions such as this for my husband. But if I were personally facing hyperparathyroidism and a shortened life span, I would without a doubt refuse the surgery and hope to spend the rest of my days happy and as MYSELF, rather than go through the change that my husband has undergone.
I can specifically trace the origin of this behavior back to that surgery. I thought that over time, it would resolve or at least improve, but it has not, and in fact, it has escalated over the last four months. I have Googled this issue a million times, trying to figure out if this is an isolated case or if there is a remedy, and apparently, it happens but is not common, or is not often reported. I sent private messages to his nephrologist asking him to check my husband’s thyroid levels or any other hormones that could be causing him to behave this way, and all of those tests came back normal.
I do not wish to reveal my husband’s identity without his consent, but want to let you know how he has fared since the surgery, in case other patients have reported something similar. And because I hope that before you recommend this surgery so confidently and enthusiastically, you will remember that the outcome may not always be positive for all of your patients.

Hi there,
Just realized you posted a year ago. I had my surgery several weeks past - and I'm now feeling all the symptoms you mentioned above! Yikes! Scary - never dreamed this would occur. Are you better now?

Thanks
Helen

Bristow....are you still on this board?

Ditto.. I'm 51. Had operation in January 23 2017. Now I'm in chronic pain neck throat left arm.. No explanation?

I have the same issue

Same with me two months post surgery! Are you feeling any better?

Did you ever find a doctor that helped you?

To all of you-just read the posts. I am so sorry to read about your struggles. I had one adenoma removed March 13, 2017. I am 57 years old and had struggled on and off but mostly off with anxiety since I was 40. All of my levels were fine even PTH prior to surgery other than calcium was 10.8. I requested scan and they did find adenoma. I had anxiety and hair loss with extreme fatigue. I knew these could be menopause related too but it was too extreme. I also had been going through some other life changes such as retirement and moving. Since the surgery I felt a little better but mostly the same but now my symptoms have worsened regarding anxiety. I am calling my doctor today to check my vitamin D calcium and parathyroid levels. My doctor gave me a prescription for Xanax which I hate taking but some days need just to get out of the house. I am praying to God that all of this will subside yet feel discouraged by reading some posts that you've been post surgery for over a year still feeling so poorly.

I am 1 week post op and am feeling brain fog and tingling in hands, feeds and fingers. I had my surgery in Tampa by the NORMAN Parathyroid Center physicians. My surgeon feels this will subside and that my thyroid is just inflamed due to surgery. Where did you have your surgery?

I'm scared after reading these testimonials that mine won't go away.