Hi again SueLW,
You probably won't have seen it but your last post crossed with my adding this line to the end of my previous:-
"As an afterthought, if you are under a Cardiologist, have you discussed the fluid retention there?"
I take it from your last post that you're not under Cardiology any more. That worries me given you're obliged to control your metabolism with meds we both know have an impact on the way the heart functions.
I had relatively minor heart rhythm issues with comprehensive cardiology investigations for them in peri, but the fibrillation is beyond my experience so you'll know way more about it than me. I just had in mind that if the heart is intermittently beating inefficiently is it possible that's implicated in the fluid retention?
"I have no energy and no stamina at all. I used to be on the go all the time. Now I can hardly move. I sleep like a log but wake up shattered. Somehow I still run a business! But Mum needs me to do physical things for her now and I can't."
Can I ask do you have any muscle wasting?
Along those lines - is there is any chance your Thyroxine is actually too high? I know you feel exhausted & we usually associate that with too little thyroid hormone but I'm sure you know it's possible to get burnt out over time on too much thyroid replacement, as the body is continually running too fast. Classic for heart rhythm probs & anxiety in that circumstance too, as you'll know.
On the other hand, I wouldn't expect you to sleep like a log if your thyroid levels were too high. What's your feeling?
I was also on beta blockers for a few months in peri at a time no-one was sure whether my thyroid levels were too high & I was worried they were. They blunted the sensation of each beat but didn't correct the rhythm & I stopped them after a while with my then Endo's agreement. It was only after going back on T3 & starting systemic HRT within a few weeks of each other that the ectopics stopped. As I'd had the irregular rhythm for several years by then & found it very unnerving, I was never more relieved in my life than when it reverted to normal.
"I was on T3 12.5 per day with 100 Levo when it started up and wouldn't stop. The cardiologist freaked me out so I stopped the T3."
Well don't blame yourself for that, I'd have done the same - combined, that's a helluva lot of thyroid hormone & we're always rightly warned that T3 is very powerful & that too much thyroid hormone of any kind long term is bad for the heart.
"My T3 was lower at that point than before I started adding T3 to the dose so I know it wasn't that. . . . Even when I bit the bullet and took 150 a day for 7 weeks, my FT4 rocketed over range to 28 (top being 22) and my FT3 went down into the 3's"
I wonder whether it's possible your body was suppressing production of T3 in a protective feedback mechanism with so much thyroid hormone coming in?
"My T3 isn't below range, just stuck between 3.4 and 4.2"
By the same token, has your Endo ever suggested reducing Thyroxine to see whether your T3 goes up? I know that sounds counter-intuitive.
"As well as the fluid retention I have stinging toes and the toes and balls of my feet feel both numb and over sensitive at the same time and burn in bed. I think this is connected too."
Yes maybe, if the fluid retention is putting nerves under pressure, but have you had your B12 tested recently? We can get burning feet/legs with low B12 as well as exhaustion & tinnitus & hypothyroidism predisposes us to developing pernicious anaemia. Btw I also have longstanding tinnitus & intermittent burning in arms & legs.
"Perhaps I'll go for it this weekend and restart T3."
I wouldn't want to do this without either Endocrinology or Cardiology approval. If you get on well with your Endo & you've missed an appt due to COVID could you maybe try to get an appt sooner rather than later & get his/her opinion on next step? Mine is back at work (private hospital) - I saw him 3 weeks ago.
Your situation is so complex Sue, with the less than straightforward thyroid condition, menopause & the AF on top. Please be very careful. I worry when thyroid patients feel (understandably) obliged to take their treatment into their own hands. It's great that we can exchange experience on here, as it sometimes helps us consider new possibilities, but my feeling is altering powerful meds is best done under supervision of the appropriate specialism.
I do hope you can decide what to do. I imagine you're under a lot of stress running a business with parents to look after & feeling so unwell. I really feel you need expert advice to get you on the right track. Please do let us know how you get on.
Wx