[mickiko]

#1059333

I went to my very first followup visit after being started on an ATD for initial diagnosis of Graves’ Disease.

The ATD (3 weeks) is working because my free T3 & free T4 are going down back towards normal, although still slightly elevated. However, my TSI and TPO-Ab both went up! I didn’t get TRAbs drawn; I’ll be having it done in a couple of weeks.

My TSI went from 198 to 242. (normal <140%)

My TPO-Ab went from 70 to 101. (normal<35 IU/mL)

I asked my endo if there should be cause for concern or if it meant anything. She didn’t seem worried and basically said it didn’t mean anything (at this point).

I have read that if the antibodies stay elevated while on ATDs that there is a decreased likelihood of having a remission with ATDs. So, I’m not sure if my Abs going up is an early indicator that it will keep going up…..or if no one can predict at this time which direction my Abs will go, keep going up, or go back down….but I’m just anticipating a failure to ATDs could be in my future and wanting to think ahead as to next steps.

Also, side topics, but related to rising/elevated Ab:
– Rising TRAb has been associated with higher risk of developing or progressing TED, right? I have read that Ab levels can go down or disappear after a thyroidectomy, but not always (maybe because of extra-thyroidal TSH receptors elsewhere in the body?). But I haven’t seen any literature on saying that having a thryoidectomy can decrease your chance of developing or prevent progression of TED?? Can anyone out there who had a thyroidectomy tell me if your TRAbs eventually disappeared or stayed elevated or even rose? And also, did you develop TED or not?
– Also, did anyone have a doctor advised them of having a thyroidectomy because of rising TRAbs despite ATDs?

Here is the article where I first read that TRAbs can disappear after thyroidectomy. They also mention that, this is why, some people with high TRAb titers may choose this route, especially if considering pregnancy.
(Sorry, I had to create a blog just to reference this article…here’s the link)

http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowPDF&ArtikelNr=336102&Ausgabe=256913&ProduktNr=255331&filename=336102.pdf

[mickiko]

#1174147

I know some of you out there have had a thyroidectomy and still got TED….and like I said, I haven’t seen anything out there saying that thyroidectomy could prevent TED from happening or getting worse. It’s just that this article says that TRAb levels may disappear after thyroidectomy for most people so why couldn’t it prevent TED then? There must be a reason….just wondering if anyone knows? Could the extra-thyroidal TSH receptors act as the antigen and be the culprit?

[Kimberly]

#1174146

Hello – Hopefully, you will get some other responses, but keep in mind that antibody levels have a fairly long “shelf life”, and can fluctuate for reasons that aren’t well understood.

Some docs do believe that there is a close correlation between antibody levels and TED activity, but not all docs agree.

The latest medical guidance does recommend antibody testing prior to withdrawal of anti-thyroid drugs, as remission is much less likely if antibody levels are still ranging.

In terms of surgery reducing the chance of TED moreso than ATDs, I’ve heard one other poster here mention that an eye doc recommended surgery as the preferred treatment option, but I’ve not seen specific studies to back this up. And, of course, all three treatment options have risks and benefits.

Take care!

[Bobbi]

#1174148

I think it is safe to say that having surgery to remove your thyroid is NOT guaranteed to prevent the occurance of TED. Talk with Shirley on our board.

[snelsen]

#1174149

Good response, Bobbi!!!
This is Shirley

Micki, I had a thyroidectomy over 5 decades ago, in my 20’s. I got TED with a vengeance in the past 2 years. I wrote a post about it just a couple of days ago. Take a look at it. From the extensive reading I have done, it seems that there is a percentage of Graves’ folks, who get TED. There is speculation that many people have very mild eye symptoms, probably more than has been reported.
But those of use whose lives are really impacted by TED, have moderate and in my case, severe TED.

I don’t think you can count on any of the labs you mentioned, telling you anything one way or the other. Except, recently, it has been shown, as Kimberly mentioned, that they might be helpful when deciding to stop ATD’s, see if remission is a possibility. The antibody labs are in their infancy, and most are super expensive, and some insurances won’t even pay for them, for IN MOST instances, they are not necessary for diagnosis or treatment of Graves’. Sometimes, they can be helpful in distinguishing Graves’ from Hashimoto’s, I believe.
Shirley

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