Cannot get my TSH in range - help needed please... - Thyroid UK

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Cannot get my TSH in range - help needed please, should I switch to levo?

Hendie profile image
19 Replies

Hello, I’ve been taking Thyroid-S NDT for 6+years and I’ve been trying to get my TSH to be close to range but cannot seem to get anywhere. I’ve tracked my ranges from 2022 and I’m still no closer. I’m nervous as when medichecks send my results they always say there’s higher risk of heart issues and osteoporosis and heart issues run in my family. As I reduce the Thyroid-S my T3 and T4 also reduce so I need another way as im feeling tired. I’m wondering if it’s better to take levothyroxine as well as the Thyroid-S (obviously reduce it) or to switch to Levo and source my own T3 or even just go fully Levo (at least I won’t have issues sourcing NDT then). I find it so hard to find the right thing to do. Any advice from people who have already gone through this please?

Here’s my stats for last couple of years up to present day, it seems like my TSH is just getting worse.

TSH (0.27-4.2) 0.005/0.01/0.01/0.007/0.008

T3 (3.1-6.8) 5.54/-/5.4/6.9/4.5

T4 (12-22) 14.6/18.3/14.8/13.6/10.6

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Hendie
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19 Replies
TiggerMe profile image
TiggerMeAmbassador

You are chasing something that won't make you well... I'm on T3 & 4 with frees well within range but my TSH is 0.05 and has been since adding T3 which is generally the case

TSH has nothing to do with heart and bone health it is your frees that count, when treating with NDT you are working on symptom relief rather than relying on bloods

Hendie profile image
Hendie in reply toTiggerMe

Thank you so much X

radd profile image
radd

Hendie,

I think the majority of the forum has gone through this.

Your results are good, and the low TSH unfortunately a consequent for many of having adequate thyroid hormones. As long as thyroid hormone levels aren't elevated there is no cardiac or bone health risk as the TSH doesn't influence these directly.

Hendie profile image
Hendie in reply toradd

Thank you so much, that’s really helpful X

Noelnoel profile image
Noelnoel in reply toHendie

or to switch to Levo and source my own T3 or even just go fully Levo

Going fully levo could be a solution for you if you’re a good converter of T4. Have you ever tried it? What was your reason for deciding to take NDT?

As I reduce the Thyroid-S my T3 and T4 also reduce so I need another way as im feeling tired

You don’t state how much you’ve reduced your NDT by but of course you’re feeling very tired, take a look at your last frees, they’re very low

Hendie profile image
Hendie in reply toNoelnoel

I was originally on Levo for a couple of years then move aboard and the Endo there put me on NDT as my t3 was low and I’ve just carried on with that ever since even when we moved back to uk.

I was on 3 grains and reduced to 2 for two months which were the last blood test figures. I’ll be putting it up to 2.5 or maybe even 3 again as I felt fine on 3 it was just that the T3 went over range on my last blood test at 3 grains (although not on the blood tests before that which is confusing).

Noelnoel profile image
Noelnoel in reply toHendie

How much levo were you taking before switching to NDT. Could it be that it wasn’t enough to give a significant rise in FT3. Did levo dosage change during the two years of taking it

pennyannie profile image
pennyannie

Hello Hendie

When optimally medicated on NDT you will likely have a low/suppressed TSH - and it does not matter :

Just as if you were taking a T3/T4 combo and / or likely T4 monotherapy.

If you were hyperthyroid and ran with over range T3 / T4 long term you may risk heart and bone issues -

but you are hypothyroid and can't ' go hyper ' though could be over medicated and with NDT we track on the T3 reading and you are well in range - and if well - good to go.

The TSH was originally introduced as a diagnostic tool to help identify someone who was hypothyroid and was never intended to be used once the someone became a patient as then you must track on the Free T3 and Free T4 readings.

Hendie profile image
Hendie in reply topennyannie

Thank you so much. I got myself really worried and this helps to put it into perspective X

SlowDragon profile image
SlowDragonAdministrator

LOW Ft3 can contribute to osteoporosis

thyroidpatients.ca/2018/07/...

Not just high Ft3

And TSH is largely irrelevant on replacement thyroid hormones

Almost everyone taking any dose of replacement hormone containing T3 will have suppressed TSH

Hendie profile image
Hendie in reply toSlowDragon

Thank you 🙏

Reefseeker profile image
Reefseeker

Can I echo what everyone else has said here. A suppressed TSH has been recognised as a consequence of adding T3 to thyroid therapy for over 50 years, but seems notably absent in medical training, subject to a very special type of collective amnesia among thyroid specialists. I am finally well on combined T3/T4 therapy but at my last appointment, the endocrinologist insisted I need to reduce my T4 dose due to the suppressed TSH and supposed risks. He had no interest in my view that the FT3 and FT4 levels are what count. Anyway, here is a link to a 1972 article coauthored by the grandfather of the TSH, Robert Utiger, recognising the suppressive effect on TSH of T3 and stating that the TSH is hypersensitive to impacts from elsewhere that need to be taken into account.

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

Hendie profile image
Hendie in reply toReefseeker

Brilliant, thanks so much I’ll have a read x

humanbean profile image
humanbean in reply toReefseeker

Amazing link, thank you. 👍

StitchFairy profile image
StitchFairy in reply toReefseeker

Great paper. But isn't part, or maybe all, of the problem that doctors and endos are convinced that TSH suppression is in itself a problem. They think TSH has it's own effects, regardless of T4 and T3 levels.

Reefseeker profile image
Reefseeker in reply toStitchFairy

Yep, it's completely back-to-front thinking.

Anthea55 profile image
Anthea55

Look at this page from the Thyroid UK website. It mentions the myths of hypothyroidism.

thyroiduk.org/further-readi...

One of the last ones is "The myth that a suppressed TSH leads to Osteoporosis". So don't worry about suppressed TSH. Mine has been suppressed for years.

Hendie profile image
Hendie in reply toAnthea55

Wow, thank you, I will. That’s really reassuring X

serenfach profile image
serenfach

Your TSH is low because you are taking the necessary hormones. Think of it this way - I look in the fridge and I have got milk, so I dont order any. Same with TSH (sort of!). This is over simplified, but you get the idea.

And any Endo or GP who spouts the bit about bones and heart is so out of date they probably believe in the wondering womb!

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