Hashi's and CFS/ME - help with latest results p... - Thyroid UK

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Hashi's and CFS/ME - help with latest results please, plus questions about symptoms

cazzaleo profile image
10 Replies

Hi!

I'd really appreciate some help with interpreting my latest results shown in the photo. My previous test results (from Nuffield) in January when on 25mcg/day levo and 15mcg/day liothyronine were as follows:

TSH 5.39 (0.35 - 4.5)

FT3 2.2 (3.9 - 6.8)

FT4 5.7 (11 - 26)

My new Medichecks test results in the picture were after an increase in levo to 50mcg/day with liothyronine remaining at 15mcg/day.

Why would my TSH now be so low when my FT4 is below range? My TSH was elevated in January when my levels were really low, so it obviously does respond sometimes - can there be an intermittent issue with the pituitary or hypothalamus?

Do FT3 levels influence TSH more than FT4 and that's why my TSH hasn't risen this time, because the FT3 isn't so bad?

If anyone has any advice on optimising my vitamin levels that'd be fab - am I right that they are fairly optimal with the exception of vit D which should be higher?

My energy levels have been a little improved this last couple of weeks (though still not right) but I've been having at least one migraine a week for the last four weeks with headaches most days inbetween, as well as feeling very faint sometimes and also having instances of what feels like low blood sugar (suddenly shaking and feeling very weak for a while). My vision also hasn't been feeling quite right, I can't always focus well but this seems to come and go, as does the severity of the headaches.

I've also noticed that my once plump and easy to take blood from veins now seem to be skinny and difficult to get blood from - is this elated somehow? I always drink a lot, and always have as I feel thirsty most of the time (tested for diabetes, no issue there), so there shouldn't be an issue with me not being hydrated enough.

Many thanks for any help you can give me!

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SlowDragon profile image
SlowDragonAdministrator

TSH is nearly always suppressed on any dose of T3

Are you self supplementing or is this via an endocrinologist?

How long since dose of Levothyroxine was increased to 50mcg?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test

Is this how you do your tests?

Assuming it was

Your FT4 is too low. You might want to consider increasing Levothyroxine to 75mcg and retesting in 6-8 weeks

This might also help improve your T3 level.

Many of us on Levothyroxine plus T3 need FT4 and FT3 above half way in range

How do you take your T3?

As 3 x 5mcg split doses? What timings?

Do you have to cut up a 20mcg tablet?

Yes would agree on vitamins

Vitamin D likely better a bit higher

cazzaleo profile image
cazzaleo in reply to SlowDragon

Thanks for your response SlowDragon.

I’m seeing a private endo who is prescribing both T4 and T3.

My levo dose was increased about 7 weeks ago.

I followed the advise on here for my blood test, with the last dose of levo the morning before the test and last dose of litothyonine the night before.

I take my liothyronine in one dose, usually at around 530/600.

I get 20mcg Thybon Henning so do have to cut it up.

Is it normal for the TSH to be this low despite the low FT4 because I’m taking T3 then?

SlowDragon profile image
SlowDragonAdministrator in reply to cazzaleo

Personally I find 3 x divided dose per day much better (7am, 3pm and 11pm)

But everyone is individual

Some find twice day is fine. Others take it all in one go (obviously the easiest option if it works for you)

So how long before test was last dose of T3?

If more than 12 hours then the FT3 result is probably falsely low

Graph showing why to take T3 approx 12 hours before blood test

healthunlocked.com/api/redi...

Research Paper data comes from

ncbi.nlm.nih.gov/pmc/articl...

Recommended on here to split the T3 dose the day before blood test, even if you don't do so normally

Many of us find as soon as we take any T3 that TSH tends to become suppressed, even if not on high enough dose. One of the difficulties of managing T3

cazzaleo profile image
cazzaleo in reply to SlowDragon

Sorry, don’t think I replied to your post in the right place!! Think it’s below in the thread instead!

cazzaleo profile image
cazzaleo

Maybe I should give splitting a go then. I did when I was on a lower dose of levo and found it worse but maybe it’d be better on a higher dose of levo.

I took the T3 pretty much 12 hours before the blood test, maybe just over. So I took the 15mcg I would normally take in the morning at 2200, then the rest was at 1000 the next day.

Thanks for the links and info!

I haven’t changed the dose of T3 between this and the last blood test yet my TSH was 5.39 the last time 🤔

SlowDragon profile image
SlowDragonAdministrator in reply to cazzaleo

As you have Hashimoto's wide fluctuations are common

Are you on strictly gluten free diet?

It can for many of us help to slowly lower antibodies

Perhaps it's time to do DIO2 gene variation test in case Endo wants to lower dose due to suppressed TSH results

Medically recognised test including compulsory counselling

thyroiduk.org.uk/tuk/testin...

"Educational testing" with no counselling

Sometimes on offer at £99

bluehorizonmedicals.co.uk/t...

cazzaleo profile image
cazzaleo in reply to SlowDragon

Have been strictly gluten free for a few years, also dairy free for a couple of years too.

Thanks - I’ll look into that testing!

cazzaleo profile image
cazzaleo

Both were at 10am (fasted, water only), earliest I could get the blood drawn privately, though I’ve had it done at the GP this morning at 815 so will see what happens this time.

As advised on here, last levo was 24hrs before and last liothyronine 12 hours before.

cazzaleo profile image
cazzaleo

Interesting, thanks. What is it about my results and the protocol that makes you suggest it? Is it an autoimmune protocol?

cazzaleo profile image
cazzaleo

Great, will investigate, thank you!

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