[snelsen]

#1061635

Hi Erica, I think Bobbi and Kimberly will give you a more complete answer about antibodies. They know more than I do.
There has been a lot of discussion about antibodies on the bulletin board lately. My quick version of antibodies and how much these labs matter, is pretty simplistic.

SOMETIMES antibodies are drawn to confirm a diagnosis which is already pretty much made by the signs/symptoms of Graves, plus thyroid labs TSH, T3T4, of Graves disease. There a couple selected lab that do help the confirmation of Hashimoto’s.
But in summary, antibody testing does not guide treatment of Graves’, Hash or TED. Even in normal people, they tend to fluctuate. Some of the antibody testing is so new, that reputable labs have a note on the results saying that they are note sure what they indicate, nor are they sure of the ranges they present.
So really, in terms of your life, how you feel, and the relationship of having a thyroidetomy, they simply don’t make any difference in treatment of any of these three conditions. Many docs and more insurance companies balk at paying for these test, cause they pretty much know the same thing. If a person want them drawn, and the doc will order them, and the insurance will pay for them, and it is important, some people will succeed in getting these tests. i think doc and insurance companies will balk at repeated tests, for the reasons I mentioned above.
1. They fluctuate anyway.
2. They do not contribute to the treatment.

Having said all this, when the clinical picture is really confusing (being hyper and hypo) there are a couple of the tests that can help diagnose (not treat) Hashi.

Regarding antibodies and surgery, yes, when the thyroid is gone, and we are making antibodies that attack the thyroid, there is no thyroid left to attack. But I am pretty sure that if they are high or low, other than knowing this, the information is not helpful.
Of interest, I had surgery, and I was very happy with my choice. It was a personal one, for I did not want the possibility of ADT’s not working at some point in time, then being faced again with a decision of "what to do" and I did not RAI cause I didn’t want it, plus I did not want (what seemed to me) a very long wait to get regulated after RAI. There are others on the board who are totally happy with ADT’s and RAI. There is not right answer except what you want, with the exceptions you mentioned in your post, of course.

Reading your post, I see that you feel antibodies are making you sick. Not sure what you mean by saying you are sick. Do you mean the same long lasting dumb respiratory crud that has been around this country for the last six months? Do you mean Graves’ Or something else. I am not sure if you can come to this conclusion that antibodies are making you sick.
Basically, antibodies are our FRIENDS! They neutralize toxins, our bodies manufacture them to attack bacteria and viruses, and they do an essential job to keep us healthy along with T cells and B cells.
In Graves’, for reasons nobody knows, instead of attacking a nasty bacteria or virus, the immune system decides our thyroid gland is our enemy. That is kind of a silly way to explain it, but that is what is going on.
So if you do decide to have antibodies tested after your thyroidectomy, there is not much to do with the information. Treatment will not change.
Shirley

[snelsen]

#1061636

Hi, I certainly did intend to mention Ski when I wrote my last email. And she has a great post about thyroid antibodies just posted recently to Erica, so that may be very helpful to you. It is a nice summary and addresses their relevance and their function.
Shirley

[erica]

#1017919

Hello, I am trying to decide if this is something I want to have done. As of now I do, I am really tired of all the thyroid problems I have had and just want it all to end. I took years before getting diagnosed with severe graves then went into remission, but now have very high antibodies making me sick. I think without the thyroid, antibodies would not be produced to destroy it, therefore not make me sick.

I would really like to know how many of you out there are happy with your results from a total thyroidectomy. I realize that many of you had different reasons for having it removed. Some probably didn’t react well to RAI or adts-or had nodules. I wonder if anyone has had it removed for having very high antibodies? I am not wanting to live like this anymore and am trying to seek options.

If you had a thyroidectomy do you still have an abnormally high number of antibodies?

Thanks, Erica

[erica]

#1061637

All good info to know, again thank you so much.

As for symptoms I have almost the whole laundry list of Graves symptoms, with a few being extra bothersome. Hair loss, dizziness, twitchy eye and leg muscles, soreness, dry eyes, anxiety like crazy, racing thoughts, palpitations, sweating, reeeeally foggy, tired, etc.. All I know is I have very high antibodies so I am assuming that is what is causing my symptoms, as the doctor said those are the only abnormal tests. I don’t know what to believe. However, after reading some posts I am going to ask for TRAb (thyrotropin receptor antibodies), and TBII (TSH-binding inhibitory immunoglobulin)-not sure if those are the same name for the antibody tests I had, but I think the more tests the better at this point.

I am trying to wrap my mind around what is posted, but it is hard for me to understand. Antibodies are our friends, but if there is a “normal” number of them, accounting for fluctuation, isn’t having too many still bad? I would think too much of anything would be bad? My antithyroglobulin is 531 range is (0-40) And thyroidperoxidase is 103 range is (0-34). Though I have lately read others had in the thousands, mine are still way above normal. If all other tests have come back normal except for those then one would think that is what is causing my problems. If I don’t have a thyroid to attack, hopefully my number of antibodies will decrease, therefore making me feel better? Wishful thinking perhaps, but it is all I have at the moment.

[Ski]

#1061638

Antibodies are very specific ~ think a "lock and key" relationship. They are the key to one specific lock, and they have absolutely no effect on anything else. If you had a thyroidectomy and are still experiencing hyperthyroid symptoms when your antibodies are high, then there’s a CHANCE there’s still a trace of thyroid tissue in your body that is reacting to the antibodies. Typically there’s a little bit left after the surgery simply because the tissues nearby the thyroid are so delicate ~ vocal cord nerve, for instance ~ so they leave a little bit to avoid causing harm. Even that tiny bit could be susceptible to the antibodies and could release excess thyroid hormone into your bloodstream. In VERY rare cases some thyroid tissue "migrates" outside the area you would expect thyroid tissue to be in, but it still functions, so again, it could be affected by the antibodies and could produce excess thyroid hormone, causing issues. TSH levels wouldn’t show it for a few weeks at least (it serves more to respond to a "running average" of thyroid hormone levels), but if your T4 levels have been bouncing around recently, that’s something to think about.

The bottom line for you is to press your doctor to solve your problem, not pat you on the head and tell you "your thyroid levels are fine." My only advice would be that you should walk into the office with as much data as you can (your own symptom diary, for instance), but NOT with an opinion as to what is causing your problem, because it’s too easy for the doctor to slap that away by saying "it couldn’t be that," and then they go about their day, leaving you miserable and still unwell. Make them think. Say "this is how I feel, these are the problems I’m having ~ what will you do to help me? And if not you, who will you send me to?"

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