Considering coming off T3: hi all. Been a while... - Thyroid UK

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Considering coming off T3

jsy_girl profile image
10 Replies

hi all. Been a while since I used this forum. But I’ve been pondering a couple of things relating to my health and the impact of T3 on it.

I’ve included latest blood results.

Firstly I feel broadly well, albeit I had pneumonia in January this year and was hospitalised for two weeks. Since then though I’ve joined a gym and regularly work out cardio/ weights or swim. Probably 3/4 times a week.

For a while on T3 I felt I could really feel it but recently, after an argument with my consultant, adjusted my dose and really I have no complaints feeling or dose wise. I am on Levo 125/150 mcg 3 days/4days a week. Lio 10/10/5 mcg a day.

I take supplements of b12 complex, vit D I take 15,000 iu a week. I take magnesium and erratically ferrous fumerate. Maybe 5 tablets a week.

What I have observed is that my heart rate, since Feb 2021 when I started t3, has steadily increased. I was a resting heat beat of 65 kind of woman and now I’m resting daily of 72-74 ish. Is it just I’m aging or, and it really does seem to have increased at point of starting lio, is it being driven by that?

My consultant reckons I’m on the highest dose of all his patients and most patients in the uk and says he doesn’t understand why I need so much more than other people. I said how does he know the other patients aren’t undertreated, he’d already stated we have little data… anyway he begrudgingly accepts he can’t convince me and we continue with me accepting the risks. However I’m wondering, should I reassess the risk I’m willing to accept here? Is my heart rate higher due to the lio? And it leads me to wonder, should I try reducing my lio? Potentially coming off. If I want to do that what’s the best way? Just a slight taper over time. Would it be best to start with reducing the lunch dose? And then remove evening dose?

Thoughts welcome. Thanks :)

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jsy_girl
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TiggerMe profile image
TiggerMe

It would seem your big issue is 'insufficient folate' even though you are taking a B Complex, worth adding in a separate methylfolate to see if you can sort that out.

As for your T3 dose, you are at the top of range so could be worth experimenting dropping 5mcg and see if that feels better and might lower your RHR, T3 does increase your metabolism so if you are taking too much it can give you a faster tick over, some find if they are too high it actually lowers there heart rate again so a little personal experimenting needed.

Personally I found I needed a higher dose of T3 for the first few months and then lowered it

I'm not sure why you would want to give up T3 when you were previously such a poor converter and you seem to be doing well?

jsy_girl profile image
jsy_girl in reply to TiggerMe

Thanks TiggerMe

I’m going to give that a go and see how I feel

No idea why it says that for folate. It was actually ok as was 37.3. Not sure why it didn’t pull through to the results download view.

SlowDragon profile image
SlowDragonAdministrator

I would experiment with reducing T3 by 5mcg

Perhaps initially by 2.5mcg for 3-4 weeks before reducing by further 2.5mcg(

if your tablets can cut that small)

So that you were then taking 10mcg, 5mcg and 5mcg

Meanwhile ferritin needs improvement

I am assuming folate test failed rather than result was low

TiggerMe

jsy_girl profile image
jsy_girl in reply to SlowDragon

thanks slowdragon as always for your thoughts.

Yes the folate was ok with 37.3 and so in the upper range. No idea why it said insufficient in that view of the results.

I always need to improve ferritin but been working on improving vit d. I probs need to find a way to consistently take two ferritin tablets a day.

luckily my current consultant has found me some 5mcg tablets so it should be possible. They’re tiny tablets though. I miss my older tablets which were big and far easier to cut down.

Will give this a try many thanks

SlowDragon profile image
SlowDragonAdministrator in reply to jsy_girl

I use sharp craft scalpel to cut Teva 20mcg into 1/4’s

5mcg tablets - which brand are they

Sigma Pharma or Morningside?

jsy_girl profile image
jsy_girl in reply to SlowDragon

I have mercury pharma 20mcg tablets and 5mcg morningside. Actually didn’t realise I now have two different brands by having the two different size products.

I started the reduction immediately that we discussed this earlier last week and today I have a resting heart rate of 66 which is the lowest in previous 12 months so think it might already be having an impact. Will monitor and retest in 8 weeks which is when I have my next consultant appt anyway. Won’t tell him what I’ve been doing. Haha.

arTistapple profile image
arTistapple

What is considered a decent resting heart rate? Are you actually resting when taking this rate? It’s recommended to be taken lying down when measuring. Even just in a sitting position requires a higher heart rate.

Do you feel unwell at that level? Until recently I had no idea the impact of low heart rate until I was able to compare it to something ‘higher’. In my experience going from a low heart rate to an higher rate is disconcerting - even to a fairly modest rate. Could this be happening to you?

I also have pulsatile tinnitus. It makes me extra aware of my heart rate, especially if it’s increasing inappropriately - Hah! like increasing my activity level only slightly (IMO).

I hope someone else could also comment on the issue of heart rate you have raised as your reason for considering coming off T3.

jsy_girl profile image
jsy_girl in reply to arTistapple

I quite agree who knows what a decent resting heart rate is. But it def went up when I started T3 and already since reducing my T3 earlier in week my heart rate has come down a notch. I just felt like for me it’s been a noticeable increase and historically my heart rate was lower. Although I have no readings pre thyroid ablation. I get my readings from my Apple Watch and am using the ‘resting’ readings which as defined by Apple is taking when I have been inactive or relaxed for a few minutes. It excludes sleep readings.

Nat107 profile image
Nat107

hi my blood pressure seemed to have gone sky high since being on t3 and it was always pretty good, my heart rate also has increased & goes really high

arTistapple profile image
arTistapple

I should have checked your bio before replying to you. Your background whilst kind of on the same road I think, makes quite a significant difference potentially to mine. Anyway I agree just lowering your T3 levels a bit makes much more sense than dropping your T3 altogether, when really you have been doing very well.

Sounds like TiggerMe experience is similar. I have read of others in the Forum experiencing likewise. That is, being able to reduce T3 after a bit and doing well.

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