Wondered if I got get peoples thoughts/experiences if they have been in a similar situation. When I was pregnant in 2021 I tested positive for thyroid antibodies but TSH, T4 etc were ok. About 6 months postpartum I had my thyroid tested and was hypothyroid with a TSH of 11 so I was put on 75mcg and then an extra 12.5mcg a few months later. I was fine on this dose always with a TSH of 2-3 which I felt good on until last year. My TSH went up to 4.9 so I started taking 100mcg - at the same time as that I got a virus and during that time started having very bad hyper symptoms (tremors, weight loss, insomnia, increased bowel movements) and it was only when my TSH went down to 1ish that I realised it was thyroid related. I have to say, that was the worst period of my life as I thought I was losing my mind, I ended up in A&E as I felt so terrible. This lasted about 6 weeks. Then about 3 months later, I got a very minor cold, and a few weeks after felt like I had something stuck in my throat and neck felt tender - went to A&E and TSH was 0.19 and was diagnosed with sub acute thyroiditis - they told me to stop thyroxine for 2 weeks to avoid becoming symptomatic and come back to be retested. I went back and TSH was 22 so went back on my normal dose but TSH has not managed to get below 4 in the last 7 months.
Fast forward to now, I had an illness about a week ago and a half ago and the same thing has happened again - thyroid area started feeling inflamed (this now has subsided) but I am now getting the hyper symptoms - increased bowel movements, anxiety feelings, palpitations, bad sleep - all the ones that I had before during that awful episode. I spoke to my GP and said I would stop my medication for a fortnight and then have a thyroid test and see where my levels are at - they seemed happy with that approach, although I know GPs are not great with thyroid related issues. I noticed, just like last time, every morning when I took my thyroxine. I would then have this awful head feeling like my head is floating away. I had such a bad time a year ago when I had those hyper symptoms and my TSH went down so dramatically - I am terrified of it happening again. I have young children and just cannot afford to go to that place again. Has anyone had anything similar? Can any major harm come from stopping for 2 weeks - it didn't last time. I feel like I can't do much else other than stop for fortnight as I don't want to keep adding thyroxine if my body is going through a phase of leaking too much. I can cope much better with hypothyroid symptoms than I can with hyper ones. Any advice/input really much appreciated as feeling a bit lost with what to do. Have an endocrinologist appt but it's not until September unfortunately. Sorry for the super long post and thank you for reading! x