I have been hypothyroid for the last 20 years, I recently have been diagonsed as being Hyperparathyroid......I know is it nothing to do with the thyroid, but I have to go for a scan monday and was wondering if anyone has had any experience with this conditon.......I have all the symptoms except the bone pain....I also have pain on the right side under my ribs, don't know what that is.....I think I will have to have surgery, does anyone know what the surgery is like? What kind of scar did it leave you with and do you feel better now? Did you have to stay in the hospital overnight? Thanks for any help.....Keech
I had that surgery in late June. They also removed half of my thyroid on the same side (right) so my scar is a very thin line the length of my throat and nearly un-noticable at this point-5+ months later. I was in just overnight for the calcium monitoring and pretty much resumed normal activity almost at once. I am retired so if you work you will have to be advised when to return. Not too long, I should think.
Interestingly my older sister was complaining of some of the same symptons so I told her to have her calcium levels tested. It turns out that she also was diagnosed with a parathyroid tumor in the same place as mine. I'm thinking it could be hereditary because parathyroid issues aren't all that common.
I will be having the surgery Monday (day after tomorrow). My symptoms have been brutal to the point where my bones feel like they're breaking glass - shattering. I was scheduled a month ago but they cancelled just before I went under because my pressure spiked and they could not get it down low enough to be safe.
For me this has been a total nightmare and the damage this has done is unbelievable. My "former" doctor missed it and I've been very long suffering. Looking forward to getting it done just to stop some of the pain, the disorientation,..... I will let you know how it goes as soon as I am able to get back on the computer.
The only thing I can say to you right now is that if it needs to be done, do it. If you don't, no matter what, it will get worse and the problems it causes will change your life. Controlling it is one thing, treating it completely another. You want treatment.
Well, I had the scan, and there is no tumor on the parathyroid, but the doctor said he still needs to remove them and after removing each one, they will immed. check to see if the calcium has gone down..I was really hoping it would have been a tumor so it could easily be removed.....He is calling it hyper plasia......I asked him what if after removeing them (3 of them) the calcium still has not gone down, and he said it could be some type of cancer, Nice huh?? Now i'm scared.....He did say he has never seen it before and that would only happen in maybe 1% of the cases, but I have never been good with gambling before......Anyway, I have an appt. on monday to talk to the surgeon and see what he says.....
And darlph, good luck with your surgery, Make sure you let us know how everything turned out......
I too suffered with severe bone pain for over 5 years and sought out 3 endos all of which said my calcium wasn't high enough (10.3-11.9 over 4 years). I now have severe osteoporosis since I did not have the surgery in time to prevent my bones from having the calcium depleted. I would have the sebastini scan(sp?) completed every year and it never showed the tumor on any of the parathyroid glands.
After 5 years of suffering I found an excellent endo and an even better EENT surgeon. The surgeon sent me for more ultrasounds, sebastini scans and was not exactly sure which glands were involved but agreed to do exploratory surgery. I also had tumors on my thyroid that needed to be removed.
I had surgery in August. The surgeon was very experienced and thankfully had seen one other case like mine in his 20 years of surgery. After exploring all 4 of my parathyroid glands my calcium did not drop after being tested. He looked one more place, under my sternum on my thymus gland was a growth the size of a marble that was comprised of thyroid and parathyroid tissue!!! After it was removed my calcium dropped to the 6.7-7.4 range. It took over 4 hours but he found the tumor which did not show up on any of the multiple scans for over 4 years!!!!
Today, I'm 4 months postop and feel so very much better. The scar barely shows, it's at the base of my neck where the neck is joined to the shoulders/chest. My calcium drop caused me to have to stay in the hospital for 3 days total and I'm still having to take calcium 3-4 times a day, but at the last check it is up to 8.1. The horrible symptoms are either gone or have drastically improved: GERD, frequent urination (from lossing all the calcium from my bones), muscle aches, kidney stones, fatigue, hair loss, etc. The bone pain and the osteoporosis will take longer, but the pain subsides more every day. I still have chronic neck/back pain from arthritis, DDD, and disc herniations but the "other" bone pain, is lessening. I only wish I could have done this sooner.
Good luck on your surgery, it's a breeze compaired to the relief that I felt that started within days after the surgery.
I had the surgery Dec 7. It was more invasive than first thought, they had to do exploratory. I have a hideous swollen scar across my neck. I also had a rare complication, pancreatitis. Although the signs were there before the surgery, it was missed. Ended up spending almost 2 weeks in the hospital.
The surgery on my neck did go well I am told, they got it all. My calcium dropped immediately as did the pth levels.
I do feel very different already, much calmer - the horrible anxiety went away completely and immediately. My pressure is down, my mental state better, just looking at me you can see a difference.
Unfortunately, I have quite a lot of damage to my bones, hair loss, etc.. which I am told will get better over time.
Because this went on so long without the surgery, I do have a longer than most recovery, but will recover. Would I do it again, absolutely! In spite of not having the best team of doctors, I do feel better and that's what matters. The rest I will just have to deal with.
The most important thing I can say about this experience is something Dr. Norman on the Parathyroid.com website emphasizes very strongly - Be sure to use the right doctor for this surgery, for this problem. Do not wait to have it done, the complications can be worse than the initial problem. The damages are many! The lack of experience and understanding by doctors out there is overwhelmingly sad. Too much can happen if you don't pick the right doctors. I am living proof of this - lots of mistakes were made along the way, lots of signs were missed/ignored. But, right now I am recovering, I do feel better, and as I said, I will have to just deal with the rest.
The Following 2 Users Say Thank You to darlpf For This Useful Post: pwells928 (07-03-2011), ThirstyMagnolia (09-17-2011)
Hi, I am glad you are feeling better.....I have to have it done on jan 14th.....I'm afraid I may end up with a scar like yours since my parathryoid did not "light" up on the scan, but the doctor said he has to look at them to see which is bad.....I hope I have a good doctor, I asked him certain things I read on Parathyroid.com and he seemed to know, but how can you really know if they are good or not.....I dont have the money to go to Miami to that hospital so I have to do with what I have.....I hope I feel better, I really don't feel badly now but the most annoying problem i have is my memory, it has gotten very bad, and that is not like me.....and of course the hair falling out but I am hypothyriod also, so I don't know if it will slow down or not.....Anyway, i'm glad you are on the road to recovery and thank you very much for replying to my post....Feels much better to know you are not alone. Take care, Carol
hi. i just wanted to let you know that i had 2 parathyroid glands removed due to a very invasive cancer. mine is called malignant paraganglioma.it is very rare and i am only 1 of 25 in the world who have it.the cancer settled in my thyroid and did extensive damage throughout my neck area.my calcium levels dropped like a lead balloon and they had to be stabilized before i was allowed to leave the hospital. i then had to take calcium for a few weeks. i had my TT on 7/31.so far i am doing ok w/out 2 of my glands.hope everything works out for you and if it does turn out to be cancer,don't freak.be upset but don't freak.i was taught that here.get informed,ask questions, learn about it.you will have plenty of support.