TSH results and medication problems: I would... - Thyroid UK

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TSH results and medication problems

Remy1 profile image
13 Replies

I would appreciate any help - current bloods are attached.

I was on 100mcg levothyroxine but still feeling poorly. My endo agreed to adding T3 on the NHS and advised 5mcg morning and the same afternoon and to reduce levo to 75mcg.

I felt quite good to start bur now the constant aches and pains and joint soreness and tiredness are returning. My endo has looked at the bloods and will not increase either meds due to my TSH being too low? I am feeling very low as the thought of carrying on as I feel at the moment is pointless.

Can anyone offer advice please who has been in a similar situation. I thought it all came down to good life quality and thought meds could be adjusted to an individuals needs to be optimally well and not based solely on bloods. I was hoping a small increase on either T3 or 4 could reduce the constant pain . I am so fed up of feeling old before my time.

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Remy1 profile image
Remy1
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13 Replies
SeasideSusie profile image
SeasideSusieRemembering

Remy1

Was your test done as we advise to give a measure of your normal circulating hormone:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

It's tricky, when on combination thyroid hormone replacement, to get the balance of Levo and T3 right. We are all individual and vary in where we need these levels to be. Some people are fine with a low FT4, others need it higher up in range and maybe fairly well balanced with FT3, so it takes time, patience and lots of very gradual tweaking to find our own sweet spot. Also, TSH is going to be low or suppressed when we add T3 and any doctor prescribing T3 should know this. Unfortunately most doctors think there is a one size fits all and doesn't understand that we all need what we need to feel well.

I am on combination replacement and I would need my FT4 a lot higher than you so it wouldn't hurt to try a bit more Levo.

Also, have you had nutrients tested? Low Vit D can cause muscle and joint aches and pains, so it would be a good idea to test the key nutrients:

Vit D

B12

Folate

Ferritin

Remy1 profile image
Remy1 in reply toSeasideSusie

Thanks for your help. Yes tests all done at 8.15am on empty stomach and no meds that morning either. I take folate and ferritin (these were very low but the GP insisted they were okay and in range until I had to advise otherwise). I did take B12 but test now showing okay and always take vitamin D.I am going to increase my levo to 100mcg and see if I improve. Would you suggest to increase the T3 or keep it the same 100mcg over the day?

I do not know how we would be without advice from this group - isn’t it sad we can’t rely on our endo or GP? Thank you again

Lalatoot profile image
Lalatoot in reply toRemy1

Only change 1 thing at a time so you know what effect it has.I would increase levo back to 100mcg per day first.

Why levo? Your ft4 is low in range and this does not suit everybody on combo, many need it higher.

Also levo is seen as safer by the medics so increase more likely to be accepted by medics if you have to admit it. And levo is easier and cheaper for you to get hold of if you need to top up your supply.

Remy1 profile image
Remy1 in reply toLalatoot

Have increased to 100mcg this morning. Had this is mind to do but wanted some reassurance that I was doing the right thing. Thank you for your help

SeasideSusie profile image
SeasideSusieRemembering in reply toRemy1

Remy1

Did you adjust time of your second dose of T3 the day before so that the time gap was 8-12 hours before test? Any longer gap and there will be a false low FT3 result.

I would increase Levo to 100mcg and retest after 8 weeks. You should find an increase in your FT4 level and, depending on how much natural conversion you still have, your FT3 should have increased a bit as well.

Remy1 profile image
Remy1 in reply toSeasideSusie

Thank you x

SlowDragon profile image
SlowDragonAdministrator

Was last 5mcg dose T3 approx 8-12 hours before test

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

Do you always get same brand levothyroxine at each prescription

DippyDame profile image
DippyDame

FT4 low for your needs at only 30.83% through the ref range.We aim to have both Frees roughly approaching 75% but, with the caveat that we are all different so the actual %age will differ ....but 30.83% would be far too low for most people.

Your FT3 is 59.73% and could be getting close to your needs!

Your T4 to T3 conversion seems adequate.

Why did GP add T3?

Suggest you return to 100mcg levo

No need to reduce levo when adding T3

Adding T3 will reduce FT4...and TSH

So in effect a double reduction of T4

Inducing symptoms again!

Low TSH will ( wrongly) cause medics to think " overmedication"

No! Not so as long as FT3 is within range

Your FT3 is safely within range

So not overmedicated!

Once T3 is added TSH is no longer an accurate reflection of thyroid hormone levels or a guide to dosing.

Like many, your medic's thyroid knowledge is sadly lacking

Poor diagnoses and treatment by "the experts" has caused almost 125,000 patients to turn to TUK for help

Essential to optimise vit D, vit B12, folate and ferritin to support thyroid function and conversion

The following should help..

thyroidpatients.ca/2021/07/...

bmcendocrdisord.biomedcentr...

You are absolutely correct signs and symptoms, should play be a significant part in diagnoses and treatments....that's how patients were treated before lab tests!

In your shoes, based on labs, I would probably have trialled an increase of levo to 125mcg first before adding T3.

You are undermedicated and unwell as a consequence!

I'm not a medic, so these thoughts are based on personal experience

Good luck!

SeasideSusie profile image
SeasideSusieRemembering in reply toDippyDame

OP already on T3 DippyDame :)

DippyDame profile image
DippyDame in reply toSeasideSusie

Realise that...just suggested I might have increased levo ( above 100mcg) before adding T3.

Probably expressed that badly...it was just an afterthought.

Unfortunately no previous labs for comparison.

Thanks SeasideSusie

Remy1 profile image
Remy1 in reply toDippyDame

Thank you. I have increased levo back to 100 from today. I am so fed up with feeling old and feeble

klr31 profile image
klr31

Check your D levels. Does the brand of thyroxine suit you or has it changed?

Karen

Remy1 profile image
Remy1 in reply toklr31

Vitamin D ok and am on Mercury Pharma as only one that suits

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