This is a bit of a long one, but I'll try to keep this brief as possible - but happy to add more detail if needed.
I ended up in A&E on NYE with severe palpitations and breathlessness. They had started a few weeks before in mid-Dec. A&E did some tests said everything was normal and was told I would be referred for a 24 hr heart monitor. I told them I was hypothyroid and assumed as a result they would have tested my TSH. I looked for the results online a week or so afterwards but they had not been added so assumed that they may not be.
I continued to get palpitations and breathlessness (although they have seemed to get better over time tbh), and I also have still had some residual symptoms from when I became hypothyroid, so posted on this forum for advice as I wondered whether I would benefit from dose increase. Opinion on the forum was that the issue was likely to be my low ferritin (that I have also struggled to increase).
In Feb, I contacted the hospital to find out what was happening with my referral and was told that the consultant wanted to see me before fitting a heart monitor and the wait was about 15 weeks.
I then went to see a GP again to see if he would check my iron and magnesium levels to check that the magnesium and serum iron was not too high while I was waiting. He looked at my hospital bloods on his system, and said it all looked fine and proceeded to patronise me insisting it was probably stress and I was to stop worrying and it would all go away. I was initially annoyed but then thought perhaps he was right so tried to focus on reducing stress. I also told him I was hypothyroid.
As I then knew the hospital tests were available online, I checked them and realised that, shockingly, no TSH test had been done. I therefore decided to do my own testing of iron status, magnesium, TSH, T3 and T4. Mainly so I could rule things out, I didn't really expect to find anything significantly wrong with my thyroid results, and also because I was still considering trying to up my dose slightly to see if it would help with residual symptoms.
So my thyroid results came in and scared the life out of me:
THYROID STIMULATING HORMONE *<0.005 mIU/L 0.27 - 4.20
FREE THYROXINE *30.2 pmol/L 12.00 - 22.00
FREE T3 *11.6 pmol/L 3.10 - 6.80
Over the same period of time, I have also had a significant increase in breast size (sore and veiny), plus putting weight on my stomach, I have also been getting hot flushes, significant increase in hunger and sex drive, dizzy spells getting worse and feeling light headed. Really light periods and some nights of disturbed sleep (different to my normal insomnia). I had put all this down to some sort of hormonal change (having done a pregnancy test which was negative) either peri-menopause or raised prolactin levels so went to see a GP again last Tuesday. He has booked some tests and have just seen that these include TSH finally. Really cross that no-one has checked this before. Suspect that some of these symptoms are to do with being "hyper" however. Could all of them be?
What do I do now? Results came in yesterday so I did not take my levo today. I have my blood test at the surgery tomorrow (bit late in day but given my suppressed TSH it probably doesn't matter). Do I stop levo for a 4/5 days and then start at 75mcg? (I am currently taking 100mcg) - presumably need to retest asap - how soon after dropping dose? Am really worried GP will panic and take me off altogether. Should I hand the results in to the GP? Any thoughts on how to handle this would be appreciated.
I am also confused as to how this had happened. I was diagnosed last May and my levo was gradually increased from 50 - 100 mcg between May and Sept with blood tests every 6-8 weeks. ALL my results from before and after diagnosis show slow and steady increases and decreases. I have been on 100 mcg since Sept and blood test in Oct showed T4 and T3 were both 50% way through the range (so not even towards the top of the range) and TSH was under range at 0.04. This test was 6/7 weeks after starting. How could it suddenly change presumably from Dec when palps started.
I think it's unlikely to be hashis as I have had 5 blood tests now showing negative antibodies and no indication of any hashis type symptoms up until now (ie wavering symptoms) and all blood tests have shown a distinct pattern. Plus a hashis "flare" surely wouldn't last 4 months?!
Any thoughts on what could be going on here?