[danielalarenas September 12, 2013 at 10:14 am Post count: 1]

#1060182

Dear anyone that can help me.

I will be quick to tell you about my story. I am 24 years old and Live in Ecuador. I was diagnosed with graves at 19 and had RAI at 22. After RAI I have been alternating eutirox dosage from 125mcg to 112.25mcg. About a year and a half ago I began to develop the thyroid eye problem. On October 2012 I began corticoids tratment for it but stopped after 3 months because of severe side effects. After that, I traveled to the US to Bascom Palmer to be able to have my eye surgery bit here is where everything started.

I had a lot of tests done (few of them never have had done before) My TSI levels were enormously high, my T4 as well and TSH very very low. The doctor said I had to have my thriroid removed to be able to stabalize it and have levels back to normal. When I travaled back to my country, I had countless appointments with numerous endos and after many many tests they decided that TT was not the way to go, since the thyroid had shrunk and have lost all potential active tissue. (Can it keep shrinking if I took RAI 3 years ago??) They just modified my eutirox dosage to 112.5mcg again (this was on Feb). On april I had tests done (but only hormones, TSI isn’t done here) my TSH had slighty risen and my T4 was decreasing.

I had tests done again last Friday, after waiting the 6 months the doctor told me , and the results are shocking and damn confusing. My TSH is high now (5.62) but my T3 and T4 are normal. Also, I had done other antibodies tests: Anti-TPO (high 35.69), Anti thyroglobuline ( normal 2.51) and anti TSH receptor (high 35.9). I am so confused and have no idea what this means. Am I hypo now? Is my graves still on its active phase? should my eutirox dosage be increased??

If anyone could help me I would surely appriciate it. I am dealing with this in a country where most endos have no clue what it is.

I must point out a few things that may be usefull to determaine this:
– I am currently recovering from an ED. (I am not underweight, in fact, since recovery fluctuations and possible being hypo, I have gained weight and aren’t able to lose it even though I eat properly and excersise regularily).
– I take Diane 35 for birth control and polycystic ovaries (which I no longer have)
– I feel fine. In fact , the results were a shock since I have no symptoms of fatigue, lost of apetite or anything related to hypothyroidsm aside from the weight gain.

Thank you so much for whoever takes the time to read and help me.

[KimberlyOnline Facilitator September 12, 2013 at 12:26 pm Post count: 4294]

#1181041

Hello and welcome – We are fellow patients here, not doctors, so we are not allowed to recommend dosing changes or give other medical advice. However, here is some general information that will hopefully be of interest.

First, although there is some connection between the thyroid and eye issues, they can occur completely separate of each other. Some patients can actually develop eye problems *before* the thyroid goes out of whack – and others can develop eye issues long after treatment.

It’s not well understood why the TSI and TRAb antibody levels fluctuate. Some eye doctors do believe there is a connection between low antibody levels and the eye disease being in the cold/inactive phase. However, it’s just as important to look at physical symptoms. Are your eyes getting better, worse, or staying the same? When you get to the point where the eyes are no longer changing, that is an indication that you are in the inactive phase.

I have heard anecdotal stories from a couple of patients whose doctors believed that thyroidectomy would have a benefit in improving the eye disease. I just haven’t seen any good research on this, though.

Labs use different ranges for TSH, but in general, if your TSH is too high, but T3 and T4 are normal, this is referred to as “subclinical hypothyroidism”. Whether to increase your dosage of replacement hormone is a discussion that you will want to have with your doctor, considering how far out of range your labs are and how you are feeling right now.

Birth control pills will “bind” a certain amount of thyroid hormone that is circulating in the body, thus making it inactive. Therefore, if you have recently started on the birth control pills, this would be worth mentioning to your doctor.

It sounds like you are kind of stuck between two medical teams in two different countries. If there is any way that you can get them to talk to *each other*, perhaps they could agree on the best course of action for your situation.

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