I had a very stressful and combative cardiology appointment yesterday. A 24hr ECG back in May showed I’m having a load of ventricular ectopic beats (over 20,000 in a 24 hour period). Palpitations was one of the many hypothyroid symptoms I’d been having, I was feeling heart flutterings when sitting quietly, particularly in the afternoons. A recent echo was fine though, and my GP, who is a lot younger than me, said she would be happy if it was her echo.
Back in May, before taking NDT, my FT3 was below range at 2.65 (range 3.1-6.8pmol/l) and I felt absolutely rubbish. I’m currently on 1.5 grains of Thiroyd (1 in the morning, 0.5 in the afternoon) and feeling great on it.
My last Medichecks results from 14/10/19 were:
TSH 0.014 (0.27-4.2mIU/L)
FT3 5.36 (3.1-6.8pmol/l)
FT4 18 (12-22pmol/l)
The cardiology registrar I saw yesterday could only see my low TSH and nothing else. He said the NDT was causing the ectopic beats. Until I pointed out to him the ECG was done about 2 months BEFORE I even started taking NDT!!! That set the tone for the rest of the appointment really, and there was a lot of talking over each other. I did manage to point out that circulating T3 is vital for good heart function, and cardiac tissue needs T3 because it cannot convert T4 itself. Told him NDT contains T3 so that's why my TSH is suppressed. He admitted towards the end he’s not a thyroid specialist, and could see I’d done a lot of reading! I didn’t say I seem to know more than you about the thyroid, but I certainly did think it.
I have tried a low dose beta blocker but it made me feel awful so I stopped it after a week. They are going to repeat the ECG and do another echo. It feels like he’s looking for/wanting to find a deterioration in heart function so he can talk me into stopping the NDT. I said the alternative to NDT was to spend the rest of my life either asleep or lying on the sofa, and at 60 I’m not prepared to do that, I still want a life. He didn’t seem the slightest bit interested in all the improvements in many of my other blood results since being on NDT (better creatinine/kidney function, MCV, haemoglobin, RBC, lipid ratios). Had a brief disagreement with him about refusing to take statins, but wasn't worth wasting time on that red herring.
He’s going to contact the private endocrinologist I saw in May (who basically told me to go away), she is also an NHS Consultant at the same hospital. Not expecting anything useful to come from that mind you. Was clearly a bad decision at the time to pay to see her, I should have got more advice from Thyroid UK first. He wanted to do another TFT blood test yesterday, but having taken my NDT that morning, plus I’d eaten, had caffeine, have been taking my B complex containing biotin, and it was late morning, I refused - which he didn’t much like as you can probably imagine.
I still have an irregular heart rhythm and a quick ECG yesterday shows the ectopics are still happening, but I rarely feel anything now. Don’t know if that’s because I’m so used to the sensation that I don’t even register it, or whether anything has changed.
Anyway please could you lovely people point me in the right direction for the best research to print out to show them I’m not doing myself massive harm with this mildly suppressed TSH (I remember seeing diogenes clarifying in one post that a TSH below 0.01 is suppressed, and so at 0.014 I’m still technically in the mildly suppressed range). I have seen several articles mentioned on here over the months, but they’re not so easy to find now that I need them.
Unfortunately I’ve read similar stories many times on here about having to fight with health professionals like this. It’s nice to know I’m not alone though, and I have no doubt that helped prepare me to stand up for myself yesterday, so thank you to everyone who takes the time to read, post and reply on here. I certainly appreciate it’s not a 5 minute job!