I meant to write a short post....sorry....but I can't seem to concentrate my words into something that makes sense.
I don't know what to do any more and just want to curl up into a ball and cry. Sorry to be pathetic and over-dramatic, but all I want to do is to lie on the floor and sleep.
I started this journey only a year ago (I am 46) and have since been diagnosed with hashi's, sjorgens, SLE and have anti-adrenal antibodies. I have tried T4 only......which made me feel awful and that's why they tested for other things. I have also tried a T4, T3 combination, which made me feel better initially, but a few months later I felt the fog, fatigue and all of the other hypo symptoms creep back in.
About 3 months ago the endo I have been seeing privately prescribed T3 only (20mcg twice a day). After a very short time, my symptoms were so much better. I had energy, my leg aches were better, weight better, constipation gone, eyebrows even looked as if they were growing back a bit etc etc. Almost at the same time I was told to take 25mcg predisolone each day for 6 weeks for other things and then taper it down.....so it may have been the pred that was making me feel better, not the t3.....but I don't think so. The t3 gave me a buzz when I first started it, so I am pretty sure it was having an effect.
(Since then, I have been to my local nhs gp who has agreed to give me all my medicines and wants to treat me on the nhs rather than having to go to London. This was a real relief as I was worried that he wouldn't prescribe t3. He took a lot of blood tests last week for the first time, but I haven't had the results.)
However, about 3 weeks ago, we went on holiday for a week and I felt really good. Since we have been back I have slowly gone downhill. I can feel myself getting worse every day. I simply can't wake up. I could sleep all day long, which has been really hard trying to hide from my teenage boys who have been on school holidays. My skin is dry, my muscles ache, I feel light-headed, the fog is worse than ever...and everything else that goes with it. My eyes feel as if they have glazed over...I was trying to sew some labels into school uniform earlier and realised that I couldn't see the top of the needle - I've always had perfect eyesight.
Incidentally, I finished taking the predisonole last week, having tapered down very, very slowly from 25 to 2.5mcg.
I feel so awful that I don't know what to do. I think my question is, has anyone else experienced this with thyroid drugs.....that they work for a while and then you go back to square one? I am a bit worried that it could be adrenal related....my instinct tells me that this isn't normal fatigue. I don't think it's the SLE/sjorgrens, although they could be contributing.
I'd be really, really grateful for any thoughts as right now I feel so ill and don't know what to do. I actually feel quite frightened. It doesn't seem normal that the medicine works for a couple of months and then just stops?
Any thoughts would be very helpful. Thank you.