parathyroidectomy side effects

uknown parathroid problem wrote:

mass wrote:

I was ready to hop a plane to FL as soon as I found out my PTH was high but my endocrinologist does not agree with Dr. Norman. She thought that the high PTH was secondary to Vitamin D deficiency. I've read and read and read and that does seem to be a traditional view. I've been taking magadoses of Vitamin D and it now tests normal but PTH is still high so now the Dr. thinks that maybe the PTH really is the primary problem. I do sleep better and have fewer pains in my chest.

I think that I don't have as many symptoms or they are milder since my calcium is normal. Besides osteoporosis I have acid reflux which is helped quite a bit by Prevacid but I don't want to take it forever. (You know, they are trying to learn whether those medicines affect the bones - just what we need!) I have some other digestive issues which haven't changed with the Vitamin D. I also have Trigeminal Neuralgia and according to Dr. Norman it could be connected to hyperparathyroidism. No one knows much about that either.

I go on vacation in a few days and will see the Dr. when I get back.

You know the crazy thing about parathyroid disease is the calcium will test normal from time to time. There have been rare cases with a high PTH and normal calcium. I took so much med for reflux and stomach over the years I wished I had purchased stock in their company. Since surgery NO reflux. My endo had me take large doses of calcium w/d and my calcium went so high I am glad I didn't have a stroke. Surgery was the best thing I have done. Choose your surgeon wisely...txgranny

I just found out that when I had my left lobe thyroid removed they had to remove an enlarged parathyroid gland also........ but what caught my attention when reading your comment was the NEURALGIA.... I have had that for 12 years........ numerous scans even recent scans that never showed the thyroid or parathyroid enlargements........maybe they are related to the neuralgia........ so far I feel OK..... alot of hot flashes though

Guest : I found that most GP's don't know a lot about hyperparathyroidism. They will put you through a battery of test and still no answers. Were your labs done fasting? Your calcium and PTH levels concern me. Not all people have bone pain. Please find you a doctor that will listen to your concerns and repeat your labs sooner that 6 mos. If not move on. If you take calcium please wait at least 4 hours before doing lab work. Educate yourself and ask lots of questions. This disease is very hard to diagnose. There are wonderful surgeons out there. Choose your surgeon wisely.Read parathyroid.com and Google Dr Chen at UCLA...

I also had a negative scan..Had three tumors. Scans shoud not be a diagnosis tool. Good luck and keep us posted...TXG

texgranny wrote:

Guest wrote:

I just found this forum and was glad to find it. All the question and responses give a lot of insight into the topic.
This topic is new to me. My cardiologist sent me to my regular doctor last week when he saw that my serum calcium was 11. The GP does not think I have hyperparathyroidism because the sestimibi was negative, even though my calcium ranges between 10.3 and 11, and the two PTH scores were 82 and 95. The GP only asked about frequent urination, but then attributed it to possible prostate problems. He also asked if I took calcium or vitamin D supplements. There were no question about other symptoms, nor were there any suggestions about getting tests for osteoporosis, 24 hour urine or kidney stones. He just said we would check it again in 6 months.
I don't have any bone or joint pain or headaches, but don't have much energy and have muscle weakness, fatigue and trouble concentrating at times. I am hypertensive but so are all of my relatives. I have atrial fibrillation, and this is my big problem. It's a daily concern.
Should I change doctors? In light of what I'm reading about hyperparathyroidism I wonder how knowledgeable he is.

Guest : I found that most GP's don't know a lot about hyperparathyroidism. They will put you through a battery of test and still no answers. Were your labs done fasting? Your calcium and PTH levels concern me. Not all people have bone pain. Please find you a doctor that will listen to your concerns and repeat your labs sooner that 6 mos. If not move on. If you take calcium please wait at least 4 hours before doing lab work. Educate yourself and ask lots of questions. This disease is very hard to diagnose. There are wonderful surgeons out there. Choose your surgeon wisely.Read parathyroid.com and Google Dr Chen at UCLA...
I also had a negative scan..Had three tumors. Scans shoud not be a diagnosis tool. Good luck and keep us posted...TXG

Oops! Dr Michael Yen at UCLA Med Center..Can view him on Youtube also

Had one parathyroid removed a week ago today. Sorry to see so many folks seeming to have major complications after their surgery.

In my case (55YO male), I hadn't realized the symptoms I had been experiencing for numerous years--dizzyness, bone aches, inability to concentrate, major forgetfullness, etc., could be caused by this disease. Just thought I was getting old! Didn't occur to me to discuss these things with my GP. I have type II diabetes, treated with oral meds, and seldom saw a doctor unless I couldn't get my scripts refilled. What led to the discovery of hyperparathyroidism was a visit to the doc after experiencing blood in my urine. Extended blood tests found the high calcium levels, and a CTscan showed kidney stones. The endro doc found the grape-sized parathyroid in an ultrasound exam. Bone density exam showed no signs of bone loss; attributed to having been a weight lifter with HUGE bones earlier in life. In case someone is interested, my pre-surgery test numbers were: PTH 105 calcium 11.7 24-hour urine .60 gm/day (standard is .12 - .28)

I'm happy to report that one week post surgery, the constant bone pain I had in my shoulder is gone, I feel clearer-headed, have more energy than I've had in a long time, and generally feel much better. The only exception I'd make is the continued pain of swallowing, tightness in the throat, and general discomfort in the 2" area of the incision. I'm assuming it takes more than a week for this to go away!

For anyone contemplating this surgery--sure doesn't seem like a big deal to me at this point. It's a no-brainer. If the numbers indicate you have an out-of-whack parathyroid, get it taken out!

As a final note, after studying this topic on the Internet before surgery, I had visions of needing to go to Florida like I've seen others post about. Had my surgery right here in northern Colorado, with a surgeon who performs about a dozen a month. Had to wait two weeks from final diagnosis as they schedule five-to-six, back-to-back, twice a month. At least here, this surgery must be more common than previous posters have reported.

Kingspec, are you in Fort Collins? I know other people have talked about having surgery there. I don't remember the doctor's name.

My Denver endo only wants to monitor since US and scan were negative. I've had bloodwork a number of times and PTH is always high (86-125) and calcium is always in the 9's so I'm not as easy to diagnose as many people. I also don't feel as bad as others but I do have osteoporosis and reflux plus various pains and digestive problems.

I'm really frustrated with playing around with this thing and I'd like to get it taken care of.

Thanks for posting your info.

Kingspec: Glad you are doing so well after surgery. The neck stays a little tight and sore for a few days. Hope your labs after surgery are good.
Keep in touch so we know how your are doing.....Txgranny


Mass: Yes your case seems to be as rare as mind. Some people have parathyroid disease with a high PTH and normal calcium. This disease never gets better on its own. I wasted 6-10 years on a "wait and see" attitude. Find a Dr that will listen to your concerns and educate yourself on this disease. Lots of info out there and choose your surgeon wisely. Best of luck and keep us posted...Txgranny

Texgranny - You are so good to keep track of everybody. I hope you are doing better too.

I have read and read and read and have practically memorized Dr Norman's site. My endo doesn't agree with him at all and her views seem to be the traditional way of handling hpt. I thought she was too young to have much experience with the disease but she says that she refers a pt a month for surgery. I hoped the scan would be positive then I would know who she refers to. I could go to another dr but it would just be picking a name and might not be any better and would be a long wait.

I've been away a lot this summer and have one more trip coming up. When I get back it will be time to do bloodwork again then I intend to have a talk and raise a lot of questions. She's really good about calling me and I like her - I just don't agree with her.

I don't know who besides Dr Norman will do surgery with a negative scan. Apparently they don't all do a scan just before surgery.

I don't feel as bad as most people and the Vitamin D has helped, but not eliminated, a lot of discomfort. I just don't like taking Prevacid and having my bones disolving. I think that some medicines that I was taking contributed to the osteo. I wonder if it is too soon to repeat the density scan.

Take care and thanks.

mass: Have you ever emailed Dr Norman? That is what I did. I could not get a diagnosis and I felt he was my last hope. Just send him a brief note with current labs and a list of your symptoms. It may take a while to hear from him, but he will answer. He is very much to the point and some people don't like that. What concerns me the most is that this disease is so under diagnosed and people loose YEARS of quality life. You may have a good surgeon in your area, I didn't and I had been to major Medical Centers in Texas looking for answers. Two endo would not make the diagnosis because my labs were not a "textbook" case. If you have read my "numerous" post...lol..you will see that I am adamant about this. Good luck to you...Best regards...TxG.....keep in touch

texgranny- I corresponded with Dr Norman for a while. I usually had a response within hours and I was rather amused by his brusqueness. I had to find a back door to get the lab work done as he suggested as my endo wouldn't order the tests so close together.

When I emailed him the results I told him that I was taking the Vitamin D as my dr wanted. I got no response. I sent three emails over the course of three weeks and got no response so I gave up on him. I know he doesn't agree with taking Vitamin D but my dr was adamant that you have to consider that possibility before you consider surgery. However, I wouldn't hesitate to contact him again if I needed him.

I leave tomorrow and we'll see what happens when I get back. I don't intend to let this go on for years.

Hope you are doing better.

Mass: Sounds like you have things under control. I am feeling better, thank you. I so hope my next labs will be in the "normal" range. Stay in touch...Txg

I was most interested to find this site. I am doctor, also have suffered renal failure (fortunately had 2 transplants) for over 25 years. I reluctantly had my parathyroids removed (I was asymptomatic) as my parathyroid hormone was very high, the calcium just at the top normal. After the operation I felt more unwell than I have the whole of my life, and I had plenty of opportunities for that. After about 3 weeks I began to be able to sleep and had a little energy back. Now, 10 months later the acute stuff has all gone but my muscles have never felt right, they either feel too slack in tone or slightly jumpy or both at the same time.

I have not had the fluey feelings or the brain fog (than goodness for something) but my energy levels - I used to really enjoy walking my dog for at least an hour a dayn have significantly dropped, my muscles feel tired very quickly though my lungs are fine. I feel that really I just want to rest and just feel not myself and headachey(though this latter is an old problem too) and I am now concerned that I am becoming depressed. I have plenty to depressed about (my kidney is apparently failing yet again ) but before I have been optimistic and feisty about it.

I know that my magnesium as well as my calcium has dropped post op and I am taking massive amount of supplements to keep it in the "normal" range. I feel now if my body is "brittle" in some way. Its as though my muscle fibres dont "zip and unzip" as efficiently as they used to.
I cant push it the way I used to, and I dont mean excessively, I mean that normal everyday things eg if I have to do things in a bit of a hurry I struggle. I am taking so many drugs now that taking another ( an antidepressant) feels the last staw. Especially as I know that low magnesium can cause these symptoms and I am not convinced is simple depression.

I am especially annoyed as I was concerned about having no parathyroid hormone and asked the surgeon to leave part of one. When I asked after the op if they had tested my parathyroid hormone levels the doctor looked at me as if I was stupid - so I expect they took them all out anyway.

It has been a relief to read the posting on this site and see that I might be right, the operation isnt as simple as we were led to believe. I would be very interested in feedback or suggestions from any of you.

I also had parathyroid surgery 2 and a half months ago. At first, I was worked up for Alzheimers due to my confusion, but further labs showed increased calcium and pth. 2 MRI's showed nothing, but when I was operated on, I had two upper adenomas which were removed, but no lower ones were found. I felt so much better,no longer confused, but I still feel kind of slow and like I am in some kind of a fog. Does anyone who has had this experience have some words of wisdom for me?

I had surgery 5 months ago as you may tell from my previous posts my recovery has had its ups and downs. My understanding with hyperplasia my recovery could take up to a year. I still battle with depression and dizziness. I have just begun taking Vit D and B6 supplements and am somewhat surprised how much better I feel. I work very hard to stay positive as I refuse to take drugs for depression. I haven't had recent labs to check calcium as my Dr does not seem to be worried about it. My PTH is low as I only have 1/2 gland left. The fog should lift, it just takes time. One thing I have learned no two cases are the same. I would get the surgery report to see if you have one or more glands left as a Dr I am sure you know that attitude is unacceptable. Best regards, and Good luck with your recovery. TXG

Hello,

My wife had a Parathyroidectomy for one gland on June 11th and felt the benefits fairly soon after. She had an unusual bought of Hypocalcimia 24 hours after surgery but recovered fairly quickly. She recently was feeling poor and her ionized calcium was up again,but her PTH was not. Since the test in July, she's been feeling much better again. (and I can tell too)

The family Dr. said that she had read up on the issue and found that it can take 3 months for the body to fully learn to regulate calcium again. The Family Doc has always been very good, the surgeon was excellent with a fantastic reputation. We have a follow up with him on August 29th.

The reason I question the findings is that I had heard calcium should normalize fast. I also find it odd that her PTH didn't elevate with this if it were another adenoma.

We've had two more Ultrasounds since surgery that show no more Parathyroid adenoma. We've had a head and neck MRI as well that are clean. She's had a CT of the Head, neck ect.. and the original Mibi scan included her chest to make sure they were able to trace all 4 parathyroid glands and only the one of three seen was highlighted.

She still has some unexplained symptoms of swollen lymph nodes, but no other blood tests out of normal than the 1 calcium. That's why the extra scans. She's been feeling better since the one calcium test and hasn't experienced bone aches or 'brain fog' that she had pre-surgery and the brief period post surgery.

My wife is a 35 YO, mother of two young ones. No family history of anything related to Parathyroid, Thyroid, Cancer, or MEN 1/2. Actually... almost all of her family goes in to the late 90's and many over 100 years old with very few health issues on both parent's sides.

Guest wrote:

Hello,

My wife had a Parathyroidectomy for one gland on June 11th and felt the benefits fairly soon after. She had an unusual bought of Hypocalcimia 24 hours after surgery but recovered fairly quickly. She recently was feeling poor and her ionized calcium was up again,but her PTH was not. Since the test in July, she's been feeling much better again. (and I can tell too)

The family Dr. said that she had read up on the issue and found that it can take 3 months for the body to fully learn to regulate calcium again. The Family Doc has always been very good, the surgeon was excellent with a fantastic reputation. We have a follow up with him on August 29th.

The reason I question the findings is that I had heard calcium should normalize fast. I also find it odd that her PTH didn't elevate with this if it were another adenoma.

We've had two more Ultrasounds since surgery that show no more Parathyroid adenoma. We've had a head and neck MRI as well that are clean. She's had a CT of the Head, neck ect.. and the original Mibi scan included her chest to make sure they were able to trace all 4 parathyroid glands and only the one of three seen was highlighted.

She still has some unexplained symptoms of swollen lymph nodes, but no other blood tests out of normal than the 1 calcium. That's why the extra scans. She's been feeling better since the one calcium test and hasn't experienced bone aches or 'brain fog' that she had pre-surgery and the brief period post surgery.

My wife is a 35 YO, mother of two young ones. No family history of anything related to Parathyroid, Thyroid, Cancer, or MEN 1/2. Actually... almost all of her family goes in to the late 90's and many over 100 years old with very few health issues on both parent's sides. [/quot

Guest: Is your wife taking calcium supplements? I learned the hard way not to take supplement at least 4 hours before lab work as it gives a false reading. I am sure you know to fast also. I am concerned so much testing has been done on her since surgery. As one that knows you don't have to have a high PTH to have a tumor, but I doubt she has one. It takes time so I have been told over and over for Calcium to be back to normal. I am happy to hear she is feeling better and recovery for all of us is different. Good luck and Best regards, txg