I haven't posted on here since I was newly diagnosed and seem to have come full circle to the place I was in 3 years ago.
I have hypothyroidism which started after the birth of my second child. I was prescribed T4 which had adverse side effects. I stuck with it, taking 75mcg, until my daughter weaned from breastfeeding about 18 months ago.
I felt a real shift at that time and started to reduce my T4. I felt better and better on lower doses of T4 but my lab results always came back as significantly hypothyroid. I tried T3 but felt really anxious and jittery on T4 / T3 combined. Actually, the anxiety was the worst symptom to deal with on T4 alone too. I felt like my stress levels were constantly so high... I am not usually a stressy person.
I stopped eating gluten last October and after 2 months of feeling awful my symptoms all disappeared in early January. At this point I was down to 25 mcg T4 and felt better than ever. I started to feel jittery and was having a hard time sleeping and decided to try without T4 at all. During this time I felt calmer, my basal temperature remained at a steady 36.8C, I didn't have any symptoms as I carefully monitored myself for the six weeks after stopping medication.
Then I caught a virus, a throat infection that stuck around and stuck around. I really could not shift it and this set off alarm bells. I also was feeling dizzy at times and lost a lot of weight very quickly. I just felt wrong. So I went to get my levels checked and my thyroid is miles out of range again (similar to when I was first diagnosed) TSH >100, T4 1.7
I have started on T4 again but this time on the liquid solution. I no longer have the anxiety issues but I have so many other symptoms/side effects - my hair is falling out, I am so cold, my temperature has dropped to 36.1, I have headaches, I crash out with tiredness in the middle of the day, my mood is low and I wake up with the worst aches and pains.
I have been trying to slowly increase my dose of T4 as I know that being undermedicated can be a problem but each time I increase everything just gets more severe.
I really feel like I'm going a bit mad. I feel well when I don't take medication but I do need the thyroid hormone, but when I take it I feel so unwell I can't function properly. The endocrinologist I saw last suggested I could have something with my adrenals but then said just to keep trying to increase T4 very slowly.
Does anyone have a similar experience to this or know why Levothyroxine might give so many side effects? I finally have a decent GP who said I could do better on NDT but she's not allowed to prescribe it so I've got to try to get back to the endocrinologist and persuade them to let me try it.
Sorry, this turned into such a long-winded rant. I just want to know more about replacement hormones really and what options I could try to balance my health again.