Advice needed on thyroxine management

[SarrahMay]

I am hoping someone can advise me about my thyroxine dose.

Here's a little background:

In September 2023, I was underweight and having trouble gaining weight and suffering from anxiety. I had been on 75mcg of levothyroxine daily for an underactive thyroid. I had recently developed pins and needles all over my body and had back, neck and head pain (these symptoms are still ongoing now). The GP checked me for autoimmune disease and I had a spine MRI but neither showed any problems. The problem seemed to lie with my hormones. I am 4 years into my menopause and have been suffering with menopause symptoms, such as hot and cold flashes, hair loss and anxiety. I haven't had any treatment for this yet.

My thyroid test results in September 2023 (on 75mcg of thyroxine daily) were as follows:

T4 - 23.3 pmol/L (9.5-22.7)

TSH - 1.34 mu/L (0.55-4.78)

As my T4 was above the normal range, and my symptoms suggested I had too much, I lowered my thyroxine dose to 75mcg/50mcg on alternate days. After a couple of weeks I started to feel less wired and less anxious and began to gain some weight.

I retested my thyroid hormones in November 2023, the results of which were as follows:

T4 - 20.5 pmol/L (9.5-22.7)

TSH - 2.10 mu/L (0.55-4.78)

T3 - 4.1pmol/L (3.5-6.5)

In January 2024 I began feeling wired again and the anxiety has increased and I am finding it hard to sleep. I think the hormone problems I am having are not simply due to my thyroid hormone levels but are also caused by menopause hormone issues. I would be very grateful for anyone's advice regarding my T4 dose (should I reduce to 50mcg per day now?), and also, should I optimise my thyroid hormones before consulting a menopause specialist?

In case it is useful, I also had ferritin and B12 tested in September:

B12 - 587 ng/L (211-911)

ferritin - 180 ug/L (10-291)

[TiggerMe Ambassador]

I'd suggest getting your sex hormones tested as you won't get your thyroid levels sorted without balancing them with your sex hormones and the symptoms cross over so you can be messing with one when actually its the other that needs a tweak...

Your fT3 is on the low side already so the wired and anxiety is linked to this poor conversion and your sex hormones

randoxhealth.com/en-GB/at-h...

p.s. also a B complex would be a good idea to get your B12 above 700, how is your folate and Vit D looking?

[SarrahMay in reply to TiggerMe]

Many Thanks TiggerMe, that is really helpful.

I didn't know that low T3 would have that effect.

I take a Thorne basic B complex tablet about once a week. I will increase this to daily. I haven't had my folate tested and I will get it tested along with my vitamin D.

I think my cortisol is high. Do you think it would be a good idea to get cortisol tested?

Do you have any suggestions as to where I could get my sex hormone panel interpreted?

[TiggerMe Ambassador in reply to SarrahMay]

Doing a cortisol saliva test can be very useful as often people think theirs is high when actually it is low as the symptoms are the same 😬

cnslab.co.uk/hpa-axis-and-s... use TUK10 for 10% off

Are you peri or post meno? They give timings of tests if still cycling and will give ranges to help make sense of the results much like thyroid results

Here's my latest Randox results 🤗

Sex Hormones

[SarrahMay in reply to TiggerMe]

Thank you TiggerMe, that is really helpful.

I am post-menopausal. I have found the need to reduce my thyroxine in post menopause compared to when I was cycling. I wondered whether this is a general pattern, or is it just me?

[TiggerMe Ambassador in reply to SarrahMay]

I know tattybogle needed to reduce post meno so there are two of you at least 😄

[SlowDragon Administrator]

Was test done as recommended

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

Do you always get same brand levothyroxine at each prescription

Free T4 (fT4) 20.5 pmol/L (9.5 - 22.7) 83.3%

Free T3 (fT3) 4.1 pmol/L (3.5 - 6.5) 20.0%

Shows very very poor conversion rate

Is your hypothyroidism autoimmune?

Are you on dairy free or gluten free diet

[SarrahMay in reply to SlowDragon]

Many thanks SlowDragon,

My blood tests were taken in the morning after breakfast, so not following the recommendations. I will try to do that in the future.

My Levothyroxine brand has been changed numerous times over the years. Is there a recommended brand? Currently I have Mercury Pharma for the 50mcg and Teva for the 25mcg tablets.

I didn't realise my conversion rate was so poor. Thank you for pointing that out. Is it possible to improve the conversion rate, or is T3 usually recommended in these situations?

I don't eat dairy and tried gluten free for a while, but it didn't seem to make any difference.

When I was first diagnosed with hypothyroidism, the antibodies test came back as negative, so I don't think I have autoimmune hypothyroidism.

Thanks for your second message SlowDragon, I will get up to date tests on B12, folate, and vitamin D. I have been taking B complex vitamins just once a week. I shall increase this to daily.

In addition to the weekly B complex, I am also taking zinc and magnesium supplements daily and vitamin D supplement in the winter months. I havee been taking zinc, since I discovered, a few years ago, that I was extremely low in it, but I haven't retested. I shall retest. Is it possible to overdose on zinc, I wonder?

[SlowDragon Administrator in reply to SarrahMay]

You could/should retest zinc

As you are dairy free (lactose intolerant?) you may be better on lactose free levothyroxine

There’s only two lactose free levothyroxine brands

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

Teva is the only brand that makes 75mcg tablet.

So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Vencamil (currently 100mcg only) is lactose free and mannitol free.

March 2023 - Aristo now called Vencamil

From June/July 2024 - 25mcg and 50mcg vencamil may be available

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to SarrahMay]

I have been taking B complex vitamins just once a week. I shall increase this to daily.

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Post discussing different B complex

healthunlocked.com/thyroidu...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

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

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

[SarrahMay in reply to SlowDragon]

Thank you SlowDragon for so much really helpful information. You and TiggerMe have really helped me, I really appreciate it😊

[SlowDragon Administrator]

September is long while ago for B12

You need B12, folate, ferritin and vitamin D levels tested

High B12 when NOT taking any B12 supplements can be misleading

Paradoxical B12 deficiency with hypothyroidism

b12oils.com/paradoxical.htm...

What vitamin supplements are you taking