I don’t know what to do : 20+ years of... - Thyroid UK

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I don’t know what to do

Sususulio profile image
8 Replies

20+ years of hypothyroid and never feeling totally well with low ish t3 results despite taking supplements to optimise my vitamin and blood levels, I decided to add T3 (tiromel) 5 mcg daily July 2024 I reduced my T4 (mercury Pharma) down from 150 to 125mcg I thought I was doing OK. Have added the MMH chart.

I have a knee problem potentially requiring a replacement and the pre-med blood test has clanged the alarm bells at the GP’s and I have to say I don’t feel brilliant, joint pain and weariness.

My latest result via the GP is:

TSH 0.14 mIU/L (0.2 - 4.3)

Free T4 12.3 plmoL/ (7.8 - 18.0)

Free T3 5.2 plmoL/ ( 3.5 - 6.8)

I haven’t told the GP about taking T3, on the basis of the TSH they told me I needed to reduce the T4 down from 150:to 125 which I refused so now I need to try and unravel before testing again in 6 - 8 weeks. I can’t understand why my T4 is low but worried if I take it back to 150mcg and stop the T3 I’ll go back to poor conversion. I don’t think either my T3 or T4 is high enough but taking anymore will really throw the TSH out

Blood tests were all taken at 9 - 9.30 am

Reaching out for the help and understanding that only seems to be available here - thank you

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Sususulio
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SlowDragon profile image
SlowDragonAdministrator

previous post in March 24

healthunlocked.com/thyroidu...

Showed TSH rising and Ft3 and Ft4 dropping

You said you had improved low vitamin levels…..this improves how you use thyroid hormones and gives better conversion

You really needed next dose increase in Levo first

Adding T3 almost always significantly reduces TSH …..which freaks GP out

You probably need to tell GP

And go see a T3 friendly endo

Roughly where in U.K. are you

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS

thyroiduk.org/contact-us/ge...

What are your most recent vitamin results

What vitamin supplements are you taking

SlowDragon profile image
SlowDragonAdministrator

was last dose levothyroxine 24 hours before test

Day before test did you split T3 taking half waking and half 8-12 hours before testing

Free T4 (fT4) 12.3 pmol/L (7.8 - 18) 44.1%

Free T3 (fT3) 5.2 pmol/L (3.5 - 6.8) 51.5%

Ft4 is on low side

Suggest you experiment with SMALL dose increase in Levo to 137.5mcg 4 days per week

Retest in 8 weeks

Alternatively go back to just 150mcg levothyroxine daily and stop T3

Without an endocrinologist overseeing your T3 treatment and inevitable low TSH an anaesthetist may refuse to proceed with operation because of low TSH

Sususulio profile image
Sususulio in reply toSlowDragon

Thank you for replying - yes the dose of both T4 and T3 (I just take it once a day) was over 24 hrs before the test.

Back in July 24 despite taking supplements my T3 had dropped so that’s when I made the decision to try a small amount of T3. My blood test results at that time:

Ferritin 49 ng/ml (10 - 180)

B12 level 576 ng/l (110 - 914)

Vitamin D 94 nmol/L (60 -150)

Serum Folate 5.8 ug/L ( 3.1 - 19.9)

I take good quality iron, folate, B12 + B complex, Vitamin D, selenium and zinc. I take them at lunchtime away from other meds. I didn’t take any a week before testing just to be on the safe side.

I can’t really understand why my TSH is so low given the T4 T3 results being quite low through range 🤷‍♀️

I think I’ll just go back to 150 mcg T4 I always have same brand Mercury Pharma and have to battle to get that. Maybe T3 just doesn’t suit me.

My weight has been an issue for years and I’m not going to bore with the details of how difficult it is but I adopted sensible calorie deficit eating and still struggle.

Thank you so much for your advice, I’ll look for a good endocrinologist nearby I’ve seen a couple in the past but found them to be fairly disinterested for the most part.

Is it sensible to just stop the T3 and revert to T4 only without any taper?

SlowDragon profile image
SlowDragonAdministrator in reply toSususulio

Ferritin 49 ng/ml (10 - 180)

B12 level 576 ng/l (110 - 914)

Vitamin D 94 nmol/L (60 -150)

Serum Folate 5.8 ug/L ( 3.1 - 19.9)

I take good quality iron, folate, B12 + B complex, Vitamin D, selenium and zinc. I take them at lunchtime away from other meds. I didn’t take any a week before testing just to be on the safe side.

Optimal levels

Vitamin D is pretty good

Aim to maintain around 100nmol

B12 good - aim to maintain over 500

Folate would have dropped if stopped taking B complex

In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70

Ferritin too low - Aim for minimum 70

Look at increasing iron rich foods in your diet

Any iron supplements should be at least 2 hours away from all other supplements (and 4 hours away from levothyroxine)

I can’t really understand why my TSH is so low given the T4 T3 results being quite low through range

That’s just what happens when we take T3

Almost everyone on T3 finds TSH drops below range or becomes suppressed even if Ft4 /Ft3 are too low

That’s why it’s difficult to manage T3 and impossible to keep medics happy unless you have a knowledgeable endocrinologist on your side

yes the dose of both T4 and T3 (I just take it once a day) was over 24 hrs before the test.

So Ft3 in reality is higher than that result shows

Last 2.5mcg should have been 8-12 hours before test

Your conversion isn’t bad

If you went back to just Levo and worked on improving low ferritin you might find it better

If not

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS

thyroiduk.org/contact-us/ge...

Is it sensible to just stop the T3 and revert to T4 only without any taper?

You could initially reduce T3 by half and increase Levo to 137,5mcg for 2-3 weeks…..if that’s going ok ….just drop T3 completely and increase to 150mcg daily

SlowDragon profile image
SlowDragonAdministrator

suggest you retest vitamin levels

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Ferritin, B12 and folate

Test early morning, stop any iron supplements 5-7 days before test

monitormyhealth.org.uk/anae...

In days before blood test, when you stop vitamin B complex, you consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)

Sususulio profile image
Sususulio

Thank you, yes I’m hoping ferritin is increased I thought when I had full blood count in January it would have been tested but seemingly not.

I understand what you’re saying about endocrinologist And will try and follow up. It’s so reassuring to have access to the knowledge base and interest here.

Meno56 profile image
Meno56

So many similarities with my situation but great advice on here, as always.

You mention joint pain and weariness, both of which could be solely from your hypothyroidism, but have you considered symptoms of menopause? I mention it because I get so achey if my Estrogen levels are low - frozen shoulder, achey knees, plantar fasciitis etc. I’m on HRT but have had problems with absorption of Estrogen with certain brands of patch. Estrogen is anti inflammatory so all very logical. I would recommend Dr Louise Newton’s Balance website for more info. It’s yet another thing that will interfere with your thyroid meds though 😬 generally requiring a bit of an increase when you’re on HRT. The gift that keeps on giving sadly!

Sususulio profile image
Sususulio in reply toMeno56

Thank you, have seen your earlier posts we are quite similar. I’m older (66) and realise now that I should have been more pro-active in trying understand estrogen levels etc during and beyond menopause.

Late 40’s I battled through menopause, thyroid diagnosis, loss of my mother and a couple of episodes of blood clots leading to pulmonary embolisms. I just battled through and HRT was an absolute no, no and now years later and better informed I can see that there was a whole storm going on.

I’ll look at the website - thank you

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