[SallyB62]

#1017983

I just joined this group tonight. The board seems to have a lot of good input from members.

Does anyone know of literature / research that indicates pro or con on testing for the Grave’s antibody after thyroidectomy?

Since my antibody levels were extremely high before my thyroidectomy, I wanted the endocrinologist to have the levels taken again at some point after the surgery to make sure the level was going down. I had read that some thyroid tissue can remain after surgery and still stimulate the body to produce the Grave’s antibody. Since I have the eyelid retraction and fluctuating vision (some days blurred, some days double, some days both, some days ok), and the doctor had indicated that I might eventually go blind if I didn’t get the thyroid taken out, I wanted to know if I am in any danger of continuing attack on my eyes. But, the endo won’t order the test, because "it is expensive and insurance won’t want to keep paying for that test."

Any direction and / or advice will be most appreciated.

[Bobbi]

#1062034

The problem with continuing to test for antibodies is that there is no "cure" for the antibodies. When I asked my endo about another antibody test, her response was that antibody levels rise and fall for no well-understood reason. There is no medication to treat specific antibodies, and any treatment for antibodies in general suppresses the entire immune system.

When it comes to the eye disease, most of us do not get horrific eye disease, even if we do not take out the thyroid. Most of us get "some" eye disease. And testing for antibody levels really isn’t going to direct the course of treatment. So, if antibody level tests aren’t going to provide information that will help, why incur the expense?

Obviously, if you want to pay for those tests, it should be your right. Sometimes, though, if a doctor "accepts" a specific insurance, that company’s contract with the doctor limits their ability to order tests beyond what is acceptable to the insurance company. That has happened to me two or three times. It’s frustrating.

[SallyB62]

#1062035

Thank you Bobbi for replying to my post.

Does this mean that I may still produce these antibodies without the thyroid present to stimulate their production? This is how my endo convinced me that the entire thyroid needed to be taken out. The endo said that my eyes would keep getting worse, and I could eventually go blind. I have the eyelid retraction with no protrusion or pressure build up. Granted, some days it looks like I was born without eyelids when they are retracted back into my head.

Do I still need to be tested periodically for eye involvement incase the antibodies are still present and may be attacking the eye area?

[snelsen]

#1062036

Hi Sally, I sure am glad you found this site. I will try to summarize my experience. Since I cut my left index finger while cutting rhubarb a couple days ago, typing is challenging, r/t big bulky bandage in finger!

I agree with Bobbi re antibodies. Knowing the antibodies, will not affect the treatment for Graves, or TED (thyroid disease.) Sometimes it is ordered to comfirm, or add one more piece of information to the diagnosis of TED.
In addition, most doctors know this, and know that it is likely to be rejected my most insurance companies. AND the insurance companies know it, too. Having said all this, if you want the test, check with your insurance co. to see if they cover ir. And if you decide you want it, tell your endo it is imortant to you, and you are willing to pay for it.
As Bobbi indicated, anrtibodies fluctuat(in people with no disease), and lots of research needs to be done to determine the meaning of all of this. The endocrine system is super coomplicated, and like the brain and genomics, there is a lot that is not understood.

For Graves’ the TSH,T3, T4, plus your own symptoms, confirms the diagnosis, and need for ATD (antithyroid drug) and probably a beta blocker (for a fast, pounding heart rate, elevated blood pressure.)
If you use the search engine, and/or even look at some recent posts, there are some good explanations of the three treatment choices for treating and managing hyperthyoidism (Graves’)

Now, your eyes are a different story. I encourage you to make an appointment to see a neuro-ophthamologist, who will carefully examine your eyes. There are two phases of TED-active, or hot phase, and inactive, or cold phase. LOTS to say about this, and my experience, but typing is a challenge. Your endo is not the person to be following you for TED. It’s related to Graves’, usually. But a whole different ball of wax. The neuro/opth doc can check you regularly, to be sure your ability to see remains good. Rhere are some beginning signs of changing vision. Sometimes, surgery is necessary to relieve the pressure on your optic nerve (called optic neuroparthy. With TED, while you are in the active phase, eyes and vision are changing all the time. When they stop changing, by your observation,and by the objective measurements eye docs, survival procedres can be done if needed. Id the double vision is making you crazy, sometimes prisms in glasses will help.
Shirley
I am going to serd a brief PM (personal message to you now,)
Welcome again!
Shirley

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