More T3?

[frenchmaid]

After coming off T3 for the last month due to being diagnosed with paroxysmal Afib, Ive realised that I can't function without it. So I'd like to rethink my dosing and see if I can regain my energy without triggering the heart rhythm issues. Dosage and blood test results today as follows:

125mcg levo

TSH 0.09 ( 0.40-6.00)

T4. 20.66. (11.59-22.70)

T3. 4.45 (3.50-6.50)

Previously, my results for both T4and T3 were right at the very top of the ranges, and TSH was 0.02 or 0.01. I think this reveals subclinical hyperthyroidism giving rise to afib . That's my theory anyway!

I'm struggling to stay awake now, and wonder if I can lower the levo and slowly (or not?) add some T3. Do these results show poor conversion? Interval between levo and this test was 24 hours. Advice welcome on current results and how to proceed with the additional T3. Many thanks!

[arTistapple]

I have been told recently that too high T4 (not T3) is the cause of AF and tachycardia. Not tested it yet for myself. Worth finding some reading on it.

Your T4 does look like it could be a bit too high for some people. Could be you too.

[frenchmaid in reply to arTistapple]

That's very interesting, thanks. Makes sense too. I'll try and find some further information on this.

[AKatieD in reply to arTistapple]

I got AFib on T3 only

[arTistapple in reply to AKatieD]

Sorry. Yes I am aware that AFib is associated with T3. There will be lots more ‘sophisticated’ connections with all our individual patterns of hypothyroidism. However it’s only fairly recently that even hypothyroidism has been associated with AF and tachycardia. Or at least proven by research! It’s mostly been considered as a hyperthyroid situation. However also more recently this more ‘hyperthyroid’ symptom has been connected with high T4.

Our medics choosing to remain ignorant of the research and their glib attitude to diagnosis, put us in constant danger.

Remember their mistakes are buried, literally.

[AKatieD in reply to arTistapple]

Yep, my theory is that it is hormone related for me as no structural heart problems found. It seems to be associated with lots of hormones - thyroid, cortisol and sex - to name but a few and they all interact.

I have been trying to balance those in the hope of preventing the AFib becoming more frequently but after 18 months it is still just work in progress.

Still hard to know how effective that will be for Afib as hormones not right yet, but fingers crossed. If not, then it will be the ablation offered!

[arTistapple in reply to AKatieD]

Oh AKatieD, me too. Just had the most hellish night I have had in a while. I have seen the endo (certainly in the UK) who ‘knows’ about this stuff but he has refused to treat me. Well where to go from here? I suspect these endos are quite happy to hand us over to cardiology, where (if possible) they know even less about the effect of thyroid hormones on the heart.

I know we keep saying it but “Where to from here?” Don’t mention ‘thyroid’ to any doctor. None of them want to refer to it. Almost as if it does not exist. They are playing at something and it’s not doctoring.

[AKatieD in reply to arTistapple]

Yes, totally agree. Nobody to trust on thyroid and hence no faith in the other doctors either, who only know anything of their own little silo and don't consider the interaction with other areas.

Hormones cross everything but orthopaedic surgeon does not seem to know that OA can depend on oestrogen (I have fixed that) or cardiologist that hearts need hormones and not just drugs or procedures (w.i.p).

I think I have brought down high cortisol levels with DHEA and lower T3. Just trying to get sex hormones back to the levels they were before doing that as they seem to have dropped off a cliff. Unfortunately, they are an area I can't adjust my own meds directly as can't seem to source them independently.

[arTistapple in reply to AKatieD]

Still it sounds like you have a plan. I also think that’s important too.

[Dgoebel in reply to arTistapple]

Can you find another endo?

[arTistapple in reply to Dgoebel]

I have seen both private and NHS. Result great disappointment. Both were recommended. IMO neither private nor NHS is set up to handle the 20% of us who are ‘difficult’ patients. Or perhaps an even smaller portion than that, since many of this 20% group do well from starting T3.

The very basics of thyroid treatment within the NHS are pretty appalling. Right from the beginning the guidelines/arrangements for deciding who has hypothyroidism in the first place are utterly careless and then comes the problem what to do about it! Needs a complete overhaul. It’s awful getting in the middle of that clusterf..k.

I have found someone (non medical) who I have just seen who has loads of experience with hypothyroidism so I am again hopeful.

[SlowDragon Administrator]

Which brand of levothyroxine

Do you always same brand

Perhaps try SMALL reduction in Levo initially

Eg reduce by 12.5mcg per day or even only on alternate days

So you could take 125mcg and 112.5mcg on alternate days

Retest in 8 weeks

What about vitamin levels

What vitamin supplements are you taking

[frenchmaid in reply to SlowDragon]

Thanks for your response. I'm in France and we have one brand only and I've been on it for years. No changes. I take daily vit c x 2000mg, D3 plus K2, magnesium taurate (for heart). Other labs are good, iron, b12 etc.Are you suggesting I reduce Levo and not add T3? Previously I was on 100mcg levo for several years and felt hypo so I increased to 125 about 5 or 6 years ago. (I used to take 2.5grains NDT, Thyroid S, before that until COVID and it became unavailable. So I'm used to having some T3 in the mix)

[SlowDragon Administrator in reply to frenchmaid]

Well ideally you would only charge one thing at a time

So reduce Levo for 8 weeks……..test ….then after you get results…..consider adding 1/4 tablet of T3……assuming you have 25mcg or 20mcg tablets

Retest 8 weeks later

[frenchmaid in reply to SlowDragon]

Thanks SlowDragon , I thought the method was something like that. Reduce levo by how much do you think? I only have 125mcg pills so I could easily halve them. Or take 3/4? Cheers.

[SlowDragon Administrator in reply to frenchmaid]

You need to get 100mcg tablets and 25mcg tablets

Then cut 25mcg in half to reduce by 12.5mcg

[frenchmaid in reply to SlowDragon]

Thanks! I'll see my doc for a change in prescription. He always agrees to what I want re thyroid.

[frenchmaid in reply to SlowDragon]

Oh sorry just read your earlier reply about dosage reduction. Thank you.

[momindenver]

When I was taking LT3 4x/d I had some bouts of afib. They went away when I reduced to 3x/d. My overall LT3 dose went from about 125 mcg/d to 60 mcg/d. My theory is that my DiO3 enzyme was overly upregulated with the 4x/d dosing. When I slowly tapered down on LT3, I had some hypothyroidism symptoms. The half life of DIO3 is longer than that of T3. ( I believe 12 h vs 6 h). The DIO3 enzyme is what degrades T3 into inactive forms. Besides lowering the LT3 dose, I also treated my sleep apnea. No more A Fib! No need for an ablation procedure! Yay!