Not sure what to do?

[diamondial]

So, following on from my last post I have recently had a blood test and I post below my results from July 2024 and the last lot from the other day - both done with the suggested timing protocols.

July: - this was on 75mcg T4 and 12.5mcg T3

* TSH 0.01 mIU/L (.35 - 4.94) -7.4%

* Free T4 (fT4) 14.3 pmol/L (9 - 19.1) 52.5%

* Free T3 (fT3) 5.4 pmol/L (2.4 - 6) 83.3%

* T4:T3 Ratio 2.648 

September: - this was on 75mcg T4 and 6.25 T3

* TSH 0.03 mIU/L (.35 - 4.94) -7.0%

* Free T4 (fT4) 12.3 pmol/L (9 - 19.1) 32.7%

* Free T3 (fT3) 4.7 pmol/L (2.4 - 6) 63.9%

* T4:T3 Ratio 2.617 

I've received the following message from my GP today. "I have reviewed your bloods. The TSH is still suppressed which is an indication of over replacement still. As you have stopped the liothyronine I would now reduce the levothyroxine from 75mcg to 50mcg and we can again repeat the thyroid levels in 3 months."

You'll notice she says I've stopped the liothyronine despite me actually putting it in writing to her that I'm taking 6.25mcg.

I'm surprised that my T4 has fallen and wonder why? The only thing I am doing differently, apart from the reduced dose of T3 is that I'm now taking a selenium supplement.

I'm really not sure what I should do now. I feel okay and can still exercise. Not too tired. Any suggestions will be very gratefully received. 😊

[SlowDragon Administrator]

Results suggest you need dose INCREASE in Levo

Up to 87.5mcg daily

Retest in 8 weeks

If GP won’t increase see endocrinologist

What vitamin supplements are you taking

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

[diamondial in reply to SlowDragon]

I am only taking selenium as a supplement - nothing else. I sent for a private Vitamin D test in 2017 after my blood test at the doctors as they didn't do it. The result was 30.9 (insufficiency range 30.1-50). I'm going to attempt to upload the only 2 blood test results I can find other than thyroid TSH/T4/T3. I can see folate and B12 which were tested in 2017 but can't see them on the 2023 one. I don't really understand the blood tests other than the thyroid ones!

2017 blood test results

[diamondial in reply to diamondial]

Here are the 2023 results

2023 blood test results

[SlowDragon Administrator in reply to diamondial]

2023 results

Free T4 (fT4) 11.8 pmol/L (9 - 19.10) 27.7%

Ft4 far too low. Many members on levothyroxine plus T3 find they need both Ft4 (levothyroxine) and Ft3 at least 60% through range

No folate, B12, vitamin D or ferritin results

Low GFR is kidney function test

Low GFR linked to low Ft4 and/or low Ft3

Poor kidney function is reversible as thyroid levels improve

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

The GFR is reversibly reduced (by about 40%) in more than 55% of adults with hypothyroidism

[SlowDragon Administrator]

Have you ever been prescribed more than 75mcg

Looking at previous posts your weight 54kg suggests if ONLY on Levo dose should be around 87.5mcg

Why not ask GP to increase levothyroxine prescription and you then you could experiment with stopping T3

Vitamin levels need to be optimal for good conversion of levothyroxine to Ft3

[diamondial in reply to SlowDragon]

I was prescribed 100mcg many years ago. It's all lost in the mists of time, or mists of my mind as to when/why it was changed. It might have been a change of doctor. My doctor, who I've never seen, seems quite keen to drop my dosage. She's now not even suggesting 75 and 50 on alternate days but but going straight down to 50 daily. Sigh.

[SlowDragon Administrator in reply to diamondial]

That’s because the Dr doesn’t understand how to manage a patient taking T3

Almost any dose of T3 will significantly reduce or suppress TSH …..it’s irrelevant

Most important results are ALWAYS Ft3 and Ft4

You need to see a thyroid specialist who’s use to dealing with someone on T3

[greygoose]

She should not be dosing by the TSH! It's bound to be low when taking T3, but it doesn't matter. It is low because the pituitary has decided that you don't need it anymore, and that is not a problem. And you can have a suppressed TSH and still be under-replaced.

The important number is the FT3, followed by the FT4. Once the TSH gets below 1 it is of little use. If I were you, I would put my foot down and refuse to reduce your dose any further and make yourself ill just because she doesn't have a clue what she's doing. If your TSH has been suppressed for a while it might never rise again, even if you stopped thyroid hormone replacement completely. How far a you prepared to go to placate this uneducated doctor?

[diamondial in reply to greygoose]

Yes it's clear she's only interested in the TSH and won't be happy until it's within range. I don't know what to say to her to be honest, or more likely write to her. The doctors surgery has now started a new system whereby all requests to see a doctor are checked by one doctor and then distributed to the other doctors as they see appropriate - Total Triage apparently so I think writing to her is my only option. I feel rather defeated.

[greygoose in reply to diamondial]

Or, you could wait and see what sort of doctor you get in the triage. You might get someone more knowledgeable.

But don't give up! You'll get there in the end.

[SlowDragon Administrator]

you need to get FULL thyroid and vitamin testing

likely low vitamin levels with such low Ft4

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[diamondial in reply to SlowDragon]

When I had the usual thyroid tests done last week I asked about vitamin and mineral testing and the nurse said they only test Vitamins D and B and the doctor has to request them. I'm going to have a think as to whether to write to my doctor and request vitamin testing or just go straight to private testing. I feel rather unsure at the moment and will give myself a day or two to let it percolate in my mind to see if a plan emerges. Many thanks for all your help - much appreciated. 😊

[SlowDragon Administrator in reply to diamondial]

See what vitamin D, B12 and folate results are via GP test

You could get iron/ferritin test separately

Medichecks iron panel test

medichecks.com/products/iro...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing