Today, I saw a surgeon, to discuss removal of my thyroid gland. I expected a fight, since I have no cancer, and only some small, benign nodules (although they are cold, and therefore, can turn cancerous). I have no huge thyroid that is obstructing my breathing, and my goiter is not overly large. My main problem is the autoimmune attack on my gland - TPO antibodies over 25,600, and anti-thyroglobulin antibodies (around 800) which I have recently developed. For 17 years, I have felt as though I have the world's worst flu - and for the last 12 years, have been completely unable to work. My condition has worsened so much over the last 2 years, that I am completely unable to even go to the grocery store most days, and if I do go, I am completely done for the day.
I expected to hear the old "Well, I do not want to take your thyroid out since there is no cancer, and since you are not very old, you would have to be on hormone the rest of your life, and your goiter isn't THAT big, nada, nada, nada."
Instead, I heard this: "Your antibody response is so great that your risk for developing thyroid cancer is 30% higher than someone with the same cold nodules, but without the high antibodies. I also feel that, since you have a good 20 years left, based on your age, your risk of developing more autoimmune problems down the road would be greater if I leave part of your gland in. Your gland is completely heterogenous, (meaning damaged), and so I see no point in not removing it entirely. I can't guarentee that you will feel better, but I can say you will not get any worse. And, you may very well feel a LOT better." He didn't come right out and say it, but he did indicate that much of my symptoms (muscle, joint and soft tissue pain, and extreme fatigue) are from the autoimmune response, and NOT from the hypothyroidism. My hypo symptoms (hair loss, heartburn, dry skin, incontenance) are all but gone, but the symptoms that have disabled me, the pain and fatigue, horrible tinnitus, brain fog, and confusion, still remain.
My fear is that my muscle, joint and soft tissue pain has been present for so long (it was 17 years in May), that it will have become chronic, and remain, even though the antibodies are gone. Does ANYONE know of anyone who had pain like that for years, that got better after having their thryoid out? I met one lady who said her mother had all her pains go away after getting her thyroid out - but she was in pain only for about a year when they found a cancerous nodule and took her whole gland. I fear that the lenght to time, for me, is a bad indicator. My worst nightmare is that I will feel exactly the same after the surgery, with no improvement whatsoever.
Any thoughts would be so appreciated!!! I'm going to try to schedule the surgery for some time in August. Keep me in prayer, please!!! I need to hear from you - please!
Good job, Ora. What have you got to lose, besides that sicko gland?
I'm sure there will be a few days after the surgery when you may not feel exactly stellar, but hopefully soon thereafter, things will improve. IME, just reducing antibody loads (my experience was not thyroid antibodies, tho) alone has a positive effect on fatigue. Even though your labs may not show impact, those antibodies sludge up the blood & all the vital organs have to work harder (or NOT) to compensate.
I hope this procedure is the magic bullet for you & that it clears up the soft tissue pain as well. Sometimes the longest-standing symptoms are the last to completely clear, as a general principle of healing, ... but wouldn't it be great if it happened pretty quick!
For my own future reference, I'm curious, what stripe of surgeon did you see who was so up on relative risks, etc?
Hiya ora, I dont know if you remember kant who used to post here? she had a similar situaton to yours I think with the antibodies. She got well again and didnt regret having hers removed.
maybe you could look back and track down some of her old posts and use them to help you make a decision.
sending you my very best xxx
Elmhar - Once again, thank you so much for your kind and helpful replies. The surgeon I saw was highly recommended to me by a friend whose 16 year old daughter, sadly, had to have her thyroid removed due to a very large goiter. He is a neck surgeon, very young (and VERY handsome!). What surprised me is that so many docs don't seem to believe that antibodies, high or low, have any real bearing on how one feels. This surgeon, apparently, believes that antibodies, especially high levels, can, indeed, cause one to feel very sick with "flu-like" symptoms. He seemed certain that leaving the gland in would cause more problems for me down the road. I can't help but feel excited, thinking that, if I get this diseased gland out of me, I can't help but feel better. On the other hand, I don't want to get my hopes up too high - I am afraid my mental state can't handle another disappointment. I've had 17 years of constantly having my hopes dashed - I truly believe this is my last real hope. And, I want so much to be able to, like Kant, be a source of hope to others.
daisy01 - I appreciate so much your good wishes! Yes, I DO remember Kant. In fact, I have been trying to find out what has been going on with her. She had given me so much hope, following her progress after her surgery. I began to fantasize that maybe I, too, could get better after getting my gland out. I remember, too, that after a few months post-surgery, she started to have problems with getting her levels adjusted. Then, she stopped posting. I don't know if that meant she got so much better and didn't need the support of the board anymore, or, if she stopped posting because she was too sick. Does anyone know which it is? She gave me so much hope - especially in the fact that all of her aches and pains went away after the surgery. I have heard of others who have had similar results - but have also heard of those who did not improve much.
I guess I have about a 50-50 chance of feeling better than I do now. LIke the doc said, if I leave it in, he can guarantee that I will continue to have problems. I will be happy if I lose the pain, and the tinnitus. That's ALL I ask.
Thanks again for your input. I will keep you posted. Am going to try to schedule the surgery for sometime in August.
if I remember correctly Kant left the boards because she got better and felt she didnt need to be here anymore. Here in the Uk they dont even test for the anti bodies let alone offer anything to ease the symptoms. My Gp told me that it doesnt matter if you have them or not because the treatment with T4 is the same.
Even though I am now on Armour and feeling great, I know when my anti's are flaring up. The sunshine seems to be the worse culprit for triggering them off in me.
I have always thought that when we are ill with a virus like flu or something then its the anti bodies fighting the infection that makes us feel ill. Then Drs contradict themselves when it comes to auto immune problems and say the anti bodies dont affect how we feel
You said it! These docs really contradict themselves when they say that the antibodies to thyroid don't make you sick! I left an Endo after she saw my TPO's over 25,600, and said: "Well, those antibodies aren't going to make a difference in how you feel." It defies reason.
I just got off the phone with a cousin I have never met - but when my Aunt found out I was having the surgery, she insisted I call this cousin who had her thyroid out in 1993. I called my other Aunt (the cousin's mother), and she said that her daughter didn't feel any better at all after her surgery. So, I called the cousin anyway, expecting to be depressed by her story. Instead, she said: "I don't know what my mother is talking about!!! I felt GREAT after my surgery, but it took a few weeks until my hormone levels were normalized. Then, all my aches, pains, fatigue, and other flu-like symptoms disappeared entirely!"
What a joy it was to hear her speak of the symptoms I have suffered with for over 17 years - in the PAST tense! She says she has almost forgotten how bad she felt then - until I reminded her! We decided that her mother has just forgotten how bad she felt back then, since it was over 13 years ago, and they live in different towns.
It was nice to talk to her because she is currently having some health problems, and it never occured to her that it could be her thyroid (they took only half of it out) acting up again. She was in a bad car accident about 3 years ago, and so has been having lots of problems - problems that may be from needing her thyroid hormone adjusted. She has been doing very well on just Synthroid since her surgery in 1993, but after the car accident 3 years ago, has been doing poorly.
Thanks again for letting me know about Kant. I got so sick that I just quit posting, and so didn't know why she left the boards. I am SO GLAD to hear that it was because she was all better. ONce again, I have HOPE!!!