Latest blood test results after reducing Levo

[SarahReed11]

Hello!!

My previous test results on 1 May 2024 whilst I was on Levothyroxine 175mg and Liothyronine 20 mg :

FT3 5.3 (2.4-6.0)

FT4 16.9 (9.0-19.1)

TSH 0.01 (0.35-4..94)

After posting in here and following advice, I reduced Levothyroxine to 150mg only and stayed on 20mg Liothyronine with my GP’s approval.

Then I had another blood test on 24 June 2024 and the results now are:

FT3 4.5 (2.4-6.0)

FT4 16.0 (9.0 -19.1)

TSH 0.01 (0.35-4.94)

I’m aware my GP wants the TSH to be within range but I’m stuck at 0.01.

Any thoughts please?

Thank you in advance!

[GlowCoach Administrator]

I’m aware my GP wants the TSH to be within range but I’m stuck at 0.01.

This is a problem if you are taking T3 as almost any amount of T3 will have the effect of lowering your TSH significantly if not suppressing it.

How does your Endo feel about a suppressed TSH?

Are you following the blood test protocol recommended?

Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

Were these 2 tests done under the same conditions for timing, fasting, stopping biotin & dose timing before the test?

[SarahReed11 in reply to GlowCoach]

I do fellow tge protocol for blood test except the timing but they said the timing didn’t matter!!

The Endo actually advised a reduction in both the meds but I was advised in here that this is too drastic.

So only Levo was reduced at my insistence. Now I just want to know what the next step should be as both the GP and the Endo team see me as a unique case. I do not want to mess things up again and need advice on the next step.

[GlowCoach Administrator in reply to SarahReed11]

How do you mean the timing?

Did you allow 24hrs for last dose of Levo & 8-12hrs last dose of T3?

Free T4 (fT4) 16 pmol/L (9 - 19.1) 69.3%

Free T3 (fT3) 4.5 pmol/L (2.4 - 6) 58.3%

FT4 is about right but FT3 slightly below where most people feel well.

How do you feel?

You could argue the case to stay on current doses using the NICE guidelines whre you can take responsibility for your results:

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility”

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. “

nice.org.uk/guidance/ng145

Note that NICE guidelines are not mandatory.

[SarahReed11 in reply to GlowCoach]

By timing I mean that the recommended time for bloods to be taken is at 9am or close to it. The GP says it doesn’t matter! So my bloods were taken at 10.45.

[Sparklingsunshine in reply to SarahReed11]

GP's also say different brands dont matter, taking Levo or other thyroid meds before a blood test doesnt matter and dont understand the importance of keeping vitamins and minerals optimal. Honestly they either dont know or dont care.

The reason we say as close to 9am for bloods is that is when TSH is likely to be at its highest, handy if trying to avoid a dose reduction. But as you are taking T3 then your TSH will be very low or suppressed anyway.

You are in no way a unique case, your results reflect the fact you are taking T4/ T3 combi, so a decent T3 level, mid range FT4 and a suppressed TSH. All that has happened since you dropped your Levo is that your frees have both dropped and your TSH is exactly the same.

I think if your doctors are waiting for your TSH to come into range then they are likely to be in for a long wait. If your Endo doesnt realise that taking T3 suppresses TSH then I'm concerned about his ability to practice medicine. Your original results were fine as both frees were well in range. The important question is how you feel compared now to how you felt in May?

[SarahReed11 in reply to Sparklingsunshine]

Thank you indeed for your response which is very helpful, it’s now becoming clearer to me.

I feel better on this current level of both doses of levo and liothyronine and will resist any attempt on GP’s part to keep decreasing! I’ll explain to my GP whom I’m seeing tomorrow that the meds are keeping TSH low or suppressed.

[Sparklingsunshine in reply to SarahReed11]

Its specifically the T3 although many members just on Levo also have issues with suppressed TSH, sometimes our feedback loop doesnt work properly or is slow to respond to dose changes. I'm also on T4/T3 combi and my results are actually very similar to your ones in May. But my TSH was suppressed when on Levo alone.

When you realise that TSH is a pituitary hormone and not a thyroid one and if the pituitary is happy that there is enough thyroid hormone in your body, then it has no need to message the thyroid or stimulate it, asking for your thyroid to produce more hormones.

For all intents and purposes your thyroid has gone dormant and the external hormones you take are keeping you ticking over. As long as your pituitary gland detects you have enough thyroid hormone circulating around then it has no need to produce any TSH and so you end up with very low or suppressed TSH.

And despite the scare stories of heart problems and bone health that doctors love to regale us with, as long as your frees remain in range there is no evidence that a suppressed TSH is dangerous. We have plenty of members who've had suppressed TSH for years and are fit and healthy.

[SarahReed11 in reply to Sparklingsunshine]

I’ll be sharing this with my GP! I’m amazed at how ignorant the professionals are.

Thank you once again! 😋

[Lottyplum in reply to Sparklingsunshine]

Here, here!!👏👏 "If your Endo doesn't realise that taking T3 supresses TSH then I'm concerned about his ability to practice medicine. " Hit the nail in the head!

[SarahReed11 in reply to Lottyplum]

Indeed yes it’s concerning about the Endocrinologists and their ability to understand. Something has to be done about this!!

[Lottyplum]

But how do we, as patients who often more on the issues than GPs or Endos, affect the training of the medical profession? The only option we have I believe is to ourselves a v good private Endo who knows the condition+it's complexities well or self medicated so we are well, not living a half life!!

[SarahReed11 in reply to Lottyplum]

absolutely. I found out in my GP appointment this morning that I’ve been referred to see the Endocrinologist. I’m feeling very wary whether s/he is well clued up…

Does anyone know where to find reputable Endocrinologist?

[Lottyplum in reply to SarahReed11]

Ask here in the forum. I see a private Endo from a referral here. Or ask for the list of Private/NHS Endos from Thyroid UK. I got the lust+then asked for recommendations. Best thing I did as can now side step the ignorance of GPs.

[Lottyplum]

Be aware many Endos only clued up about diabetes+don't have a clue about Thyroid issues!! Crazy situation - so find out who you'll see+ask for input from the forum.

[SarahReed11]

thank you, will do 👍🏻