How I Was Diagnosed. - Graves' Disease and Thyroid Discussion - Living with Graves Disease

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How I Was Diagnosed.


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#1 Kate-Graves

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Posted 23 May 2020 - 01:15 AM

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When I was 14 years old I suffered from depression. I was at my grandmothers house when I confided in my friend (via text) just how bad I wanted to kill myself. She called the cops because she feared I would try to commit suicide. That’s when my parents and I decided that I needed to be hospitalized. It was there that I was diagnosed with Graves’ disease. They started me out on 45 mg a day taking 3, 5 mg pills three times a day. I don’t really remember what happened to me after I was diagnosed because I was too focused on anything besides myself to remember. That’s when I found my love for books. I didn’t want to live, so I lived in my books. Each new book breaking off a piece of me and replacing it with a character. I failed more classes  than I passed. I had no interest in anything but my precious books. I had such bad anxiety and paranoia that I never wanted to leave the house. I remember being out bowling with my parents (one of the few times I would let them convince me to leave the house) and thinking that the bartender would kill me. He hadn’t provoked me, barely even looked at me but that’s what the paranoia did. I’m now 16 years old, still can’t go a day without reading and about to have surgery to get my thyroid removed. I have been on methimazole for two years and it is no longer working. A lot of people in my family have thyroid issues but it’s all hypothyroidism. It might seem stupid but I don’t want to to have hypothyroidism like everyone else. I struggle with my weight and my emotions and I have terrible heat sensitivity. I still struggle with depression and anxiety and I’m scared for the future.




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#2 Allies

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Posted 23 May 2020 - 08:02 PM

Hi Kate and welcome : D

I'm so sorry you are having to go through all this :( Graves can certainly do a number on our psychological as well as physical health.

Is there any chance you can see a different doctor and get a second (or even third opinion)? Thyroidectomy will (with almost 100% cetrainty) result in hypothyroidism and consequent reliance on doctors to provide adequate thyroid hormone replacement for the rest of your life - and I gather that not all doctors are particularly good at that :(

Are you comfortable sharing your thyroid hormone test results here (along with the reference ranges)? It pains me to say it but not all doctors (including some endocrinologists) are very good at managing Grave's disease. Many of us have seen several doctors before we find one who really seems to know what they are doing. In order to try and avoid hypothyroidism, a good doctor is very important.

Probably the first thing to be aware of is that Grave's is an autoimmune disorder, this means our immune systems have become confused about what is a threat and what isn't. In the case of Grave's disease the immune system creates antibodies to the TSH receptor sites on our cells. So Grave's is confirmed by blood tests that detect these TSH receptor antibodies (TRAB); sometimes only the 'stimulating' type of TRAB is tested and this is usually called the TSI test (thyroid stimulating immunoglobulin). The stimulating type of TRAB is what causes the thyroid gland to go into overdrive in Graves disease - it also suppresses the production of thyroid stimulating hormone(TSH). This TSH suppression is where some doctors go awry. They sometimes forget that TSH should NOT be relied upon for deciding the appropriate level of anti-thyroid medication; and in an effort to get the TSH where they think it should be our actual thyroid hormones - T3, T4, free T3 and free T4 - are forced too low. This is known as iatrogenic hypOthyroidism - and it is VERY unpleasant (unfortunately and confusingly some of the symptoms of hypO and hypER thyroid overlap, and it's not always possible for us to tell which end of the spectrum we are on by symptoms alone :( )

My concern is (and it's only a guess based on my personal experience and the rather common experiences of other Grave's patients) that your doctor might be judging your thyroid state by your TSH level. I remember very clearly being told that antithyroid drugs were not working because my TSH remained suppressed - but looking at the actual thyroid hormones the meds were quite clearly bringing these levels down (which is precisely what antithyroid meds are supposed to do :) ) This is why I asked if you were willing to share your results here :)

I gather you enjoy a bit of escapism by reading, how about challenging yourself to read up a bit on how the thyroid works? It's a long way off from escapism but this is happening and I think it's helpful to have a bit of an understanding of what's going on in your body - it's kind of empowering too, which can be a little helpful when we are feeling at the mercy of outside factors that we don't understand :)

Cheers
Allies
:D





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