Hi, I jsut thought I would post this here in case anyone else is in the same position I was. I had Hashimoto's disease and my thyroid was growing. I was on levothyroxin. My endo kept telling me to have surgery because a large thyroid can cause problems down the road although there was no sign of any cancer. So because I couldn't guarantee that I would still have insurance down the road, and because the endo kept bringing it up every time I saw him I went ahead and had the surgery. Supposedly I had a very good surgeon. But he said he had trouble because the thyroid was so large. Well, to make a long story short my parathyroid glands were damaged in the surgery, apparently they are delicate little things. Now because I don't absorb nutrients well I have to take massive quanties of aactivated vitamin D (Calcitriol) which is unbelievabley expensive. It costs me $212.00 for a 5 day supply. I also have to take massive amounts of Calcium. Before I took these, just a few days out of the hospital, I ended up in the emergency room with my hands and feet all twisted up and my face all contorted. i had run out of calcium in my blood stream. The parathyroid helps to process the calcium and without it my muscles all cramped up.
This whole thing has changed my whole life. I now live in fear of being without calcium which I must take at least 3 times a day along with the vitamin D. I can't exercise because that drives calcium out of your bloodstream. I am afraid even to take a walk. Now, I have never been afraid of much of anything. But after the emergency experience I am afraid to do much of anything. I went from taking a very cheap med to taking one that I doubt I can afford without insurance. If I lose the insurance it will bankrupt my family to keep me alive. We will lose everything including my husbands small 401k. We have no hope of any kind of dignity in our retirement and are going to end up dependent on the state in our old age. All because I believed what the endo told me. I could have gone on for years with nothing more than a small bump on my throat. And they never did find any cancer. If you are facing the surgery please google thyroid surgery, hypopaarathyroid and anything else you can think of before you do it so you will be fully informed.
The symptoms of hypoparathyroid are much worse than living with an enlarged thyroid.

I have enlarged nodules on my thyroid. Biopsies were ok. After ten years they have finally shown some growth, after Dr put me on Synthroid trying to "shrink" them.
Sometimes now, my voice is gravelly, especially if I'm tired. I don't want surgery either unless I have to. Worried....
I'm so sorry you're having to deal with all that.

Woodsy, please get on the web and educate yourself. I wish I had. Check out parathyroid disease as well as thyroid disease and surgery. I was on synthroid for years and mine never shrank. Ask the doc what the long term effects are of keeping the thyroid. Ask what happens if you have the surgery and the parathyroid is affected. Ask what happens if they never regenerate. Also, I had almost no voice for two months after the surgery because the vocal cords were damaged too. (even though I was told that at the most it would be no more than a couple of weeks if my voice was even affected at all.) Since I work 100 percent on the phone I couldn't work either. You might start research on the Mayo Clinic web site but don't stop there. Find out everything you can before you decide to have surgery. Please for your own good.

Sorry to hear about your experience. I did have 2 kinds of thyroid cancer ( incidentally both my biopsies came back inconclusive of anything so the next step was surgery). I think a lot has to do with the experience of the sugeon. My doc has done numerous amounts of thyroid surgeries. I had 2 done within 10 days... both times a huge risk to the parathyroids and vocal chords. I had 1 parathyroid removed to check for cancer... it was neg. It is a huge risk, as are all surgeries... it's always important to get a second or third opinion and seek out the best surgeon you can.

Joesfolks.....that is a gut wrenching story that I am sure was hard for you to even have to share but I am so glad you posted it. I have a growing nodule due to Hashi's, but haven't had an endo suggest removing it. They want to biopsy it, but I still haven't done that because I know I have Hashi's. I am so sorry for what you have to go through. Hopefully, there will be better treatments on the horizon for you soon! I will think long and hard before letting anyone touch my thyroid gland. My brother has the same thing I have, so I will be passing this info to him as well! So thank you.

I am so very sorry to read this! With all that you've already been through, this just isn't right.
That is very pricey and I'd really nudge you to find a local pharmacist to help you find a way to get it at a reasonable price.
It happened to me that way....my local pharmacist was able to assist me in getting a $200- Rx down to $35-. we went generic.

Is there a case for malpractice on this surgeon?
grrrrr....makes me mad!

I am so sorry Joesfolks. Endos seem to know nothing about the thyroid and IME seem to harm rather than help thyroid patients.

Judy's advice on generics is very sound. Can you try that?

Joesfolks - I'm sorry to hear what you went through. =(

Though I am not at 100%, I have no complaints at all about the physical-facts of my surgery to have my large nodule/part of the center of my thyroid removed.

I was very very scared to have it done, and my physiatrist (who was coordinating my pain management) gently took my hands in hers and asked me why I was scared?, and explained to me in detail the risks and the actual % of anything going wrong.

She said the surgeons in the area (small ish area, she knows them all) that operate on thyroids are very good - and in my case she was right. No parathyroid damage, still a slightly off voice after a few months (ENT surgeon says it can take a year or so to come back to normal).

I think if you need the surgery (and mine was very large and *needed* to come out) you have to read about the risks and see the % of times they can occur with surgery. And then make your own decision.

I feel terrible for Joesfolks, that the experience has been so horrible =(, but I didn't want this to become a thread where only negative experiences were shared.

Judy, no I haven't considered legal action, yet. I'm not a litigious person. I want to wait a while because there is still a chance that the parathyroid will regenerate (very small). I did find a government program that brought the cost way down but it's still over $100.00 a month. We'll see what happens in the next few months. With any luck at all there will be some regeneration.

Thanks everyone for your concern and comments.

I'm glad that you found a way to get the cost down...that was ridiculous Mary!!
IMO...I'd speak to an attorney now....so you know what your options are.
They will usually take a case like this on a contingency basis....no money out of your pocket. They get paid a % of what you win if you win. 30% is what I have heard. They do not get paid if you don't win....so they are very motivated!!
This is clearly a case of malpractice Mary....fight for yourself!! I'm mad for you!!

I agree with Judy. The no win, no fee guys are great for someone in your situation. I think these guys should not get away with it really.

So sorry you're going through all this.

I agree with Judy. That surgeon may damage someone else.

Best wishes to you.

Thanks for sharing your story, although it was heart-breaking to read. I am sorry you are having to go through all that. I will tell anyone that I know that is considering surgery on their thyroid to research it carefully before agreeing to it. You are right, what is a small bump on your throat compared to what you are going through?!