[Kimberly]

#1063557

Hello – Doctors still don’t completely understand the mechanism behind the eye disease, which is probably why you are seeing so much conflicting info. ” title=”Smile” /> And while there is often a *correlation* between antibody levels and the active phase of the eye disease, this is *not* a sure-fire connection. The diagnosis of TED — and also the determination of when the "hot" phase is over — are made based on symptoms such as swelling, proptosis, vision changes, etc..

[Krystal25]

#1018257

Hello!

Is it true that you can be tested to see if you carry the antibody that causes TED? I have heard people talking about that fact that GD patients can be tested for this? I was under the impression that the same antibody that causes GD causes TED? But I have heard misleading information on this. Can anyone help answer my question??

Thanks,

Krystal

[Bobbi]

#1063558

I don’t think that scientists have identified a single antibody that they know is responsible for TED. And, I’m not sure that if they had, you would be able to say for sure that you would either get TED or not, or determine how severe things would get. The situation is more complicated than that for some unknown reason. As Kimberly pointed out, TED is diagnosed based on physical symptoms rather than from antibody analysis.

[lakeview]

#1063559

Hi there,
I am and always have been euthyroid – however I have graves eye disease. All my blood tests have come back normal indicating my thyroid gland is not the issue. Finally my endocrinologist did a test for thyroid antibodies and it was not normal. So, it explains that while my thyroid itself is fine but my eyes are not. It was not fun initially working with my GP who did not realize that you can have Graves disease but be euthyroid. it was my Eye specialist who explained that with thyroid antibodies (Graves) many things can be implicated – the eyes, the thyroid and the skin – and who knows what else – for example I had terrible charlie horses and back aches before the onset of my eyes …..
I hope this helps

[Ski]

#1063560

We just got some info on the TSI test (at the conference) ~ it’s true that these antibodies are implicated in Graves’ Disease (the thyroid disease), and can be conclusive in diagnosing Graves’ along with observation of symptoms and elevated thyroid hormone levels. It appears that there is some relationship with TED (or pretibial myxedema) symptoms, but the direct connection has not yet been fully charted. It doesn’t appear that the number of antibodies in the system has a direct connection to severity of symptoms, etc., but we do know a few things. For instance, a patient that is attempting remission from ATDs may have a better chance of achieving that remission if the TSI levels are low when the medications are stopped. We also know that a pregnant mother with high levels of the TSI antibodies may have a higher risk of giving birth to a baby with transient hyperthyroidism (NOT Graves’) as a result.

Unfortunately, likelihood of TED is not something we can quantify right now, by any means. Most of the time, thyroid disease patients present with TED within 18 months of onset of thyroid symptoms, but there are those with TED that never develop thyroid symptoms, and there are those who end up with TED who were successfully resolved as to their thyroid symptoms for more than 20 years. I certainly wish I could guarantee that there were one way it happens, and if you’ve passed that point, you’re home free. But no one can do that.

The one thing we DO know is that only a small percentage of GD patients end up with severe eye symptoms, and only a small percentage *of those* develop the most severe symptoms, the ones that’ll make your knees go weak when you see those pictures. So while it’s possible, the odds are against it happening to you, so hopefully that helps a little.

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