My last post seemed to cause confusion so I'm going to try to be clearer with this one. For clarity (and with respect and thanks to those who took time to respond), I know that people are often misdiagnosed but I definitely have Graves so I don't need any comment on whether this diagnosis is correct.
Background and questions:
I was diagnosed with hypothyroidism last May 2017 after many months of feeling unwell with various hypo symptoms. It took about 8 months of many blood tests to fit the criteria of hypothyroidism. During this period of 8 months, my T4 was consistently about 11-12 (range 12-22), and my TSH gradually increased until it was over range - this took 6-8 months. When I was diagnosed my T4 was 10.9 (12-22) and my TSH 4.8 (0.27-4.2).
Went on levo and gradually increased and started to feel better over time.
Then in December I started to get palpitations followed swiftly by hyper symptoms. I tested my thyroid levels (after being fobbed off by hospital and a GP!) and my T4 was 30.2 and T3 11.6 and TSH suppressed. Eventually I was diagnosed with Grave's disease with a positive TSI antibodies test (0.8 - range 0 - 0.4). Please note I have never tested positive for TG or TPO antibodies, but endo suspects I have hashimotos as well as Graves.
When I came off levo my T4/T3 levels naturally dropped to around the top of the reference range - fluctuating over and under the top - TSH suppressed. I was getting fluctuating mild hyper symptoms.
I was eventually put on a low dose of carbimazole. Shortly after starting carbi I had two/three weeks of feeling normal again (the first time in about 3 years!) but then I started to develop hypo symptoms. I suspect that I felt well initially as my levels dropped to the top of the reference range but as they started to decrease further hypo symptoms started.
So after 7 weeks on carbi, my T4 was 12.1 (12-22) and my T3 4.6 (3.1-6.8) (TSH 0.02 (0.27 to 4.2). Endo agreed T4/T3 were a little low so reduced carbi from 5mg a day to 5mg every other day. After another 7 weeks, my T4 and T3 had dropped further to 10.4 and 3.9 respectively (ranges the same). TSH increased to 1.98 at this point. I was then taken off carbi altogether as endo thought I might have "gone hypo again".
However, after 6 weeks on no carbi and no levo, my T4 increased to 12.9, and TSH lowered to 1.44 (ranges the same). Endo then said that this meant I was absolutely fine and my ongoing symptoms must be unrelated to my thyroid.
I went to see my GP, and explained that although my results were in range, my T4 is now about what it was when I was diagnosed as hypo. And also showed her that my TSH had taken 6-8 months to respond to my low T4 (probably more than this actually as I felt unwell for a long time before even going to my GP in 2017). I said I felt I needed levo. She wanted to give my thyroid another 3 weeks for the carbi to definitely be fully out of my system which I thought was fair enough.
Blood test on Tuesday and my T4 has dropped to 11.7, and my TSH has gone up ever so slightly to 1.81. GP wanted to still wait and see. I explained that although I am feeling slightly better than I was a few weeks ago, I am still getting hypo symptoms/am struggling and I didn't really want to wait any longer. On this basis she prescribed me 25mcg.
So my questions are:
- I am concerned that 25mcg is going to do very little and may even make me feel worse and that this will be used as a reason to take me off levo in 6 weeks time. I have toyed with not taking it. Would welcome others thoughts on this?
- GP seems to think my TSH slowness to respond is unusual. Has anyone else experienced this?
- Why is my TSH still so low (it doesn't seem to be responding much at all at present). Could this be due to the Graves or carbi? Is there any evidence that graves or carbi can cause lingering issues with TSH?
- Do I tell my endo that I have been prescribed levo!?!
- At what point, do I think bugger this and self-medicate. It's all such a bloody struggle and I understand why doctors are cautious at not over-prescribing but I am 99% certain that my symptoms are hypo-related, and I know I feel better when my T4/T3 are towards the top of the range (at which point my TSH is likely to be suppressed), I just know it's going to be fight every step of the way getting there. I also hate feeling like I am at the mercy of whoever has the precious prescription pad. I would rather be in charge of my own thyroid! However, there are obvious risks and downsides of self-medicating eg access to medication (especially with Brexit coming up), getting it wrong, doctors refusing to monitor you etc etc etc.
Would welcome others thoughts on next steps.
Many thanks for reading! Sorry for long post.