Looking for some advice and thoughts please

[Apollo1]

For background I've hopefully attached link to previous post healthunlocked.com/thyroidu...

I'm on Levothyroxine only for thyroid and 50mcg Oestrogen HRT.

I was referred to Endo (NHS) following difficulties getting Levo dose right and symptoms under control after starting HRT (March 2022). Endo (Spring 2024) questioned original diagnosis based on blood tests for past few years due to suppressed TSH (below 0.05) and initially suggested I stop Levo all together. I refused due to fear as already felt awful and my history made me believe I wasn't misdiagnosed:

Prior to HRT, I was taking between 100 and 125mcg and TSH as follows:

5/2016 2.5

4/2017 5.3

9/2017 0.5

5/2018 1.7

10/2018 2.3

4/2019 2.7

9/2019 2.3

7/2020 2.1

2/2021 3.7

During this time, I never felt completely well but was getting by with doing much reduced activity. After the 2/2021 test, GP advised to increase to 175mcg. Which helped but within a couple months felt too much (palpitations) so reduced to 150 and increased back to 175 in Autumn based on how I felt. In hindsight, 175 was a lot as my normal weight is about 55kg and I should've given 150 more time.

3/2022 started HRT (Oestrogen gel and progesterone (body identical). TSH became regularly suppressed (less than 0.05) and T4 over range, so reduced levo to 125, then alternate 125/100, then 112 daily, then 100 daily after seeing Endo (after refusing to stop Levo, Endo suggested reducing it very gradually. I asked to trial T3 and they said it might be a possibility, but not while TSH so suppressed).

Blood tests after 2mths of 112.5mcg:

4/2024 TSH 0.11, T4 19.7, T3 4.1

Tests after 2mths of 100mcg:

6/2024 TSH 0.17, T4 21.1 (they didn't do T3)

Tests after 2mths of 100mcg x5 and 75mcg X2 days:

8/2024 TSH 0.34, T4 18.6, T3 3.9

Following this, I felt full for hours after eating, loss of appetite, stomach upsets, acid reflux and weight loss to Nov 2024 when I started taking Hydrochloric Acid for low stomach acid.

Also increase of intermittent tingling, pins and needles, numbness in hands and feet and at times, severe extreme pain in hands and wrists.

After continuing on 100mcg x 5 & 75mcg X2:

11/2024 TSH 0.23, T4 18.8, T3 4

1/2025 TSH 0.19, T4 18.4, T3 3.9

Endo this week said TSH still too suppressed to trial T3 and didn't feel that chronic fatigue and low stomach acid were related to thyroid (I didn't even bother talking about wrist/hand pain etc). I agreed to lower dose to alternate days of 100/75mcg in the hope of being able to trial T3 but scared of other symptoms worsening and not being acknowledged.

I'm now so confused and done with it all. Maybe the other symptoms are related to menopause (my periods have finally stopped which isn't surprising as I'm 54, but could also be due to the weight loss (went from about 54kg down to 51kg in a few months). Maybe they're right and I was treated too soon after questionable diagnosis, or my thyroid has made a miracle recovery and I could stop thyroxin altogether (I find this unlikely based on how awful I feel).

I now have to decrease Levo as directed or lose trust of Endo, but don't know whether to:

Keep everything else as it is and hope TSH goes low enough to trial T3 (and risk worsening symptoms)

Increase HRT to try and ease symptoms, knowing this could increase T4 and further suppress TSH, losing the option to trial T3, or

Stop using HRT altogether to bring T4 down and TSH up and increase chance of getting T3 (I really don't want to do this as I'm definitely menopausal and it deffo helps with some symptoms)

It's so hard when there's such a cross over in symptoms and Endo is only considering blood test results...although I get that they can't give T3 with suppressed TSH. I'm also aware that I'm like a dog with a bone trying to get T3, but it might not even help.

I'm so sorry for very long post, but any thoughts or opinions would be much appreciated.

Other recent tests (1/2025):

Vit D 89.8 (above 50) have been taking oral spray 3000 with K2 for at least 10 weeks prior to test

Serum B12 225 (180-1000)

Serum Ferritin 42 (10-300) have just started 3Arrows Iron Repair 1x 22mg a day but nervous as didn't have full iron panel so advice appreciated.

Also taking 1 per day of Thorne Basic B complex and stopping 5 days before Thyroid tests.

Am having thyroid tests before 9am, empty stomach, only water and 24 hrs after levo dose.

Am on Gluten and Dairy free diet.

[Apollo1]

Endo is using range of normal TSH being 0.27 to 4.2)

[SlowDragon Administrator]

Serum B12 225 (180-1000)

taking 1 per day of Thorne Basic B complex and stopping 5 days before Thyroid tests.

Your B12 is really terrible especially considering been supplementing

Request GP test for Pernicious Anaemia

Likely to need B12 injections

If no injections…..Certainly going to need daily separate B12 supplement

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

NICE guidelines on B12 and testing

healthunlocked.com/redirect...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement As well as separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

In-depth article on different forms of B12

perniciousanemia.org/b12/fo...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

perniciousanemia.org/b12/le...

And why aiming to keep B12 over 500 recommended

perniciousanemia.org/b12/le...

Great reply by @humanbean on B12 here

healthunlocked.com/thyroidu...

Ferritin

Good you are thinking about this but you MUST get FULL iron panel test first

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 3-4 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

It’s a vicious circle

Vitamin levels likely low because of your extremely low Ft3

Poor conversion of Ft4 to Ft3 as result of low vitamin levels

But you are highly likely to need addition of T3 especially as Looking at previous posts you are dairy free and gluten free

Currently on Teva Levothyroxine

Have you tried Vencamil

Roughly where in U.K. are you

Some areas are more pro T3 than others

Think you need to change endo

[Apollo1 in reply to SlowDragon]

Thanks for replying...I'll try to get GP to do further tests. Will test for Pernicious Anaemia be separate to full iron panel?

[SlowDragon Administrator in reply to Apollo1]

Yes

Pernicious Anaemia is an autoimmune disease

Often associated with autoimmune thyroid disease

[SlowDragon Administrator]

After continuing on 100mcg x 5 & 75mcg X2:

11/2024 TSH 0.23, T4 18.8, T3 4

1/2025 TSH 0.19, T4 18.4, T3 3.9

What’s range on Ft4 and Ft3

[Apollo1 in reply to SlowDragon]

T4 range is 12-22, but have never had T3 tested via GP so don't get results on NHS app....Endo just writes with results and doesn't give range

[SlowDragon Administrator in reply to Apollo1]

Contact endo secretary and request results and ranges

or test privately in 6-8 weeks after adding last vitamin supplement

[Apollo1 in reply to SlowDragon]

Will do. So do you think TSH shouldn't need to be in range before introducing T3?

[SlowDragon Administrator in reply to Apollo1]

It depends on Ft4 and Ft3 results

But also, especially in your case, low vitamin levels will be resulting in poor conversion, higher Ft4 and low TSH

Get vitamin levels to GOOD levels

Retest thyroid levels and see what has changed

Recommended that ALWAYS do 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)