Dropped levo as advised, feel rubbish! - Thyroid UK

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Dropped levo as advised, feel rubbish!

Loo44 profile image
14 Replies

Very brief post as I feel so awful and want to go to bed! Was on 125mcg thyroxine (not sure how to tag my last post to this one), dropped slowly (as advised on here) to 100mcg and am now having even worse heart palpitations than before! Could this be related? Drs appointment not until the 13th. I’ll attach my latest bloods if anyone can advise - many thanks x

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Loo44
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Buddy195 profile image
Buddy195Administrator

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Did you reduce by 12.5mcg initially, as suggested by helvella ?

Loo44 profile image
Loo44 in reply toBuddy195

Yes I did - had heart palps before, but these are much worse! Have spare levo I can reintroduce if needed, just not sure what to do. Thanks Buddy195 x

Buddy195 profile image
Buddy195Administrator

I have edited personal information from the header of your photo and re- posted. I didn’t want to leave this in case you were asleep…

Was FT3 tested at all?

What time was the test in Feb 2025? Was Levo taken after the blood draw (not before)?

TSH should always be under 2, with most members here reporting they feel best when this is closer to/ falls below 1. Yours is elevated and FT4 low in the range, suggesting an increase in Levothyroxine is needed.

I’ve experienced heart palpitations, tremor, fast pulse when both over and under medicated thyroid wise and understand how frightening this can be. Making slow, steady adjustments in thyroid medication and having key thyroid vitamins optimal really helped me.

When were ferritin, folate, B12 and vit D last tested?

Loo44 profile image
Loo44 in reply toBuddy195

Buddy195, thank you so much. Brain fog is real! T3 not tested. Bloods drawn at 9 am prior to any food or medication, biotin stopped 4 days before. Ferritin and Vit D not tested, but serum folate 8.5ug/l (range 3.1-20.5) and B12 >2000 as I self inject. Would you suggest a small increase or jump back to 125mcg of thyroxine? I know you’re not a doctor, but you’ve given me more help and time than one! Many thanks.

Buddy195 profile image
Buddy195Administrator in reply toLoo44

I am an advocate of low and slow changes, so personally would increase by 12.5mcg. I like to do this alternate days at first, until well tolerated/ no adverse symptoms and then add 12.5mcg daily. It’s important to retest 6-8 weeks after being on a consistent dose. Personally, I wait for the full 8 weeks, as it seems to take this long for me to ‘feel the benefit’.

Next test, do try to get FT3 in addition to TSH and FT4.

If your GP is unable to sanction this (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

Loo44 profile image
Loo44 in reply toBuddy195

Thank you so much Buddy x

Loo44 profile image
Loo44 in reply toBuddy195

Hi Buddy195,

I’ve got some results as you suggested.

TSH 1.77 (0.35-4.94)

Free T4 16.1 (9.0-19.1)

Free T3 3.6 (2.4-6.0)

Serum Folate 9.4 (3.1-20.5)

Endo says my previous results were ok and couldn’t see why the reduction of thyroxine would result in heart palpitations! Yet again, left to fathom my health out without GP help. Any insight into the above levels would be greatly appreciated. Thanks xx

Buddy195 profile image
Buddy195Administrator in reply toLoo44

Please check ranges for TSH and the FT4 level…

Loo44 profile image
Loo44 in reply toBuddy195

So sorry, I’d put folate results twice!

TSH 1.77 (0.35-4.94) - thank you x

Buddy195 profile image
Buddy195Administrator in reply toLoo44

Please check FT4 too

Might be best to put all results from new test in a new post to alert more members to respond

Loo44 profile image
Loo44 in reply toBuddy195

If I only had a brain! Amended, thanks x

greygoose profile image
greygoose

Thing is, if you reduce your levo/FT4, you're possibly also going to reduce your FT3. And it's low T3 that causes symptoms - including palps. So, you really need to keep your eye on that number, too. It's the most important one.

Loo44 profile image
Loo44 in reply togreygoose

Thanks greygoose x

SlowDragon profile image
SlowDragonAdministrator

Looking at your previous posts you had pituitary tumour so your TSH is particularly unreliable and you will always need replacement thyroid hormones

Are you on Growth Hormone and/or adrenal replacement too?

How much levothyroxine are you taking

Do you always get same brand Levo at each prescription

When were vitamin D and ferritin last tested

What vitamin supplements are you taking apart from B12

Obviously you MUST have TSH, Ft4 and Ft3 tested together every test

16 days ago

Free T4 (fT4) 13.7 pmol/L (9 - 19.1) 

Ft4 only 46.5% through range

Ft3 likely lower

most recent test

Free T4 (fT4) 16.1 pmol/L (9 - 19.1) 

Ft4 now 70.3% through range

Free T3 (fT3) 3.6 pmol/L (2.4 - 6) 

But Ft3 only 33.3%

Have you previously tried/been prescribed T3?

next steps

Test vitamin D and ferritin

And see knowledgeable pituitary and thyroid and adrenal endocrinologist

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