Getting to the right dose of Levothyroxine

[MoonBab]

Hi all,

I was diagnosed with an underactive in April with TSH of 11ish and have gradually increased the dose of Levo from 50mg to 100mg.

In August I started losing a lot of hair, so I'm really keen to get my levels sorted ASAP before it becomes very noticeable. I know there are delayed reactions due to hair life cycles, etc., but it's been going on for three months now and doesn't seem to be slowing down.

My iron levels are ok and ferritin is 53 - low-ish but my GP insists that this is fine. I'm taking supplements and am mostly vegan. No other noticeable deficiencies as far as I can tell

My most recent test results were 4.8 (slightly above the normal range) and my GP said they don't want to increase my dosage of Levo to 125 even though my symptoms haven't really improved (still tired, still cold, and of course the haaaair).

I've read here a lot that people feel better when TSH is much lower, and as my TSH is still elevated, I'm really confused as to why my GP wouldn't increase my dosage?

What have others experienced in terms of getting to their right dosage and TSH levels?

[Brightness14]

Not TSH Level but FT3 which should be tested too. All GP's are so obsessed with TSH what a shame for the patients.

[MoonBab in reply to Brightness14]

I asked for this but they didn't seem to want to ask for it. My last test only gave TSH even though they ordered a full function test which was odd, so I now have to wait two months when my GP recommends testing again.

[Brightness14 in reply to MoonBab]

They rarely test for this on the NHS most people use online private blood testing.

[Forestgarden]

What was 4.8? Tsh? T3? And what was the normal range given?

[MoonBab in reply to Forestgarden]

Sorry, TSH was 4.8 and normal range is 0.4 to 4.0

[Forestgarden]

I'm sure others will mention iron, but if its lowish, thats probably not sufficient

[SlowDragon Administrator]

what vitamin supplements are you taking

As vegan you need daily B12 and daily vitamin B complex

Remember to stop B complex 5-7 days before test and take just B12 and separate folate supplement instead

likely to need ongoing iron supplements

Test full iron panel 3-4 times a year if supplementing

Obviously TSH is far too high if over 2

You need 25mcg dose increase in levothyroxine

Retest in another 8-10 weeks after increasing

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)

[SlowDragon Administrator]

welcome to the forum

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

Have you had thyroid antibodies tested?

if not had vitamin D tested yet

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

[MoonBab in reply to SlowDragon]

Thank you for this super detailed response.

I am supplementing everything I need (more actively in the past few months since the hairloss!). B12 levels have always been fine and my Vit D was on the low side during summer, but I've been taking my vits diligently since.

I asked for an antibody test and T3 test but my GP doesn't want to / can't (who knows which) order this. Do you have to go private for this?

[SlowDragon Administrator in reply to MoonBab]

Many thousands of U.K. patients forced to test privately

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)

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Both Medichecks and BH also offer testing just TSH, Ft4 and Ft3 plus both thyroid antibodies

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

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

Tips on how to do DIY finger prick test

See detailed reply by SeasideSusie

healthunlocked.com/thyroidu...

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

[Bearo]

GP May think your ferritin is fine, but there is research showing hair loss happens when Ferritin drops below 70.

If your iron results are good otherwise, you may have to address this through diet. May be tricky if you’re vegan as liver is usually recommended. Lots of posts on here about raising ferritin, but raise a new post if you can’t find them.

[MoonBab]

Interesting about the research - thank you!