Help Needed with my Levo Dose: I was diagnosed as... - Thyroid UK

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Help Needed with my Levo Dose

slblue7629 profile image
7 Replies

I was diagnosed as hypothyroid at the end of last year. My GP started me on 50mcg levothyroxine. She increased this to 75mcg in March, then to 100mcg (at my request) in July. I've now been on that dose for 7 weeks and just took a private test (following the standard protocol) with MMH so that I know roughly what's coming before my scheduled NHS blood test next week. These are my latest results:

TSH: 0.38 mU/l (Range 0.27 - 4.2) 2.80%

FT4: 21.8 pmol/l (Range 12 - 22) 98.00%

FT3: 4.6 pmol/l (Range 3.1 - 6.8) 40.54%

I suspect my GP will want to drop my dose back to 75mcg, given that my FT4 looks high. However, I'm concerned that the FT3 is still low. Do I need to spend longer at the current dose to get an accurate picture? Or am I just a poor converter, and should I be looking at sourcing some T3? If so, how do I go about that? I'm sure I'll get nowhere with the NHS.

As far as symptoms go, I still have occasional palpitations, low mood, anxiety, breathlessness, tinnitus, hair loss, etc.

I'm taking Vitamin D with K, Ingennus B complex, and magnesium.

Thanks for any advice or insight.

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7 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Your results are all within range, so despite a fairly high FT4 thats OK on Levo only but if you do add T3 then you would need to drop Levo by 25mcgs.

Hows your ferritin level? Thats often a cause of hair loss.

You aren't the best converter, you can email info@thyroiduk.org for a list of T3 friendly Endo's. Pick a couple then make a new post asking for feedback by private message.

Have you been on the supplements 6 months or so and have retested and know your results are optimal?

slblue7629 profile image
slblue7629 in reply to Jaydee1507

Thanks for this. I haven't tested my vitamins since July. At that time, my results were:

Ferritin 98 (30 - 332)

Folate 45.8 (7 - 46.8)

B12 130 (37.5 - 188)

D 104 (50 - 250)

I've been taking supplements since May. Should I get my vitamins (especially ferritin) to an optimal state before trying for T3? Any suggestions for improving ferritin are welcome.

Thanks again.

Jaydee1507 profile image
Jaydee1507Administrator in reply to slblue7629

So vitamins are all optimal, by the time you get some T3 it will have been a few months. Continue the supplements as you are now and retest a year from when you started them.

Ferritin is optimal (said to be 90-100), but I wonder as you have hair loss if you should get an iron panel run as its possible to have good ferritin & poor serum iron.

slblue7629 profile image
slblue7629 in reply to Jaydee1507

Many thanks Jaydee. I'll take your advice re. the iron panel.

SlowDragon profile image
SlowDragonAdministrator

You might want to reduce dose SLIGHTLY

Eg 87.5mcg twice a week and 100mcg 5 days a week

Retest in 8-10 weeks

Looking at previous posts your hypothyroidism is autoimmune - hashimoto’s

Have you had coeliac blood test done yet via GP

If not get that done BEFORE trialing strictly gluten free diet

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

If Ft3 still remains low…..then like many Hashimoto’s patients you are likely to need added T3 prescribed alongside levothyroxine

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

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

slblue7629 profile image
slblue7629 in reply to SlowDragon

Yes, I had a coeliac test in July, and it came back negative. I haven't started gluten-free yet, but I will. I'll do anything it takes to feel well again. I like your suggestion about taking a reduced dose on some days, but I doubt I can convince my doctor - doesn't agree with cutting pills, and I don't think anyone makes a 12.5mcg size? If I find an endocrinologist to see privately, how easy is it to see the same person via the NHS? Sorry for the brain fog, but what's the process?

Thanks so much for your advice.

SlowDragon profile image
SlowDragonAdministrator in reply to slblue7629

but I doubt I can convince my doctor - doesn't agree with cutting pills, and I don't think anyone makes a 12.5mcg size?

They do make 12.5mcg (Teva brand - Teva upsets many people )

Also 12.5mcg tablets are expensive to NHS at £18.12 per 28 tablets.

25mcg tablets are 79 pence per 28 tablets

But no need to have 12.5mcg tablets

If GP won’t allow cutting of tablets ….just reduce by 25mcg one day per week

Levothyroxine is a storage hormone

Thousands of patients do cut tablets. Use a sharp craft scalpel or pill cutter

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