Recently diagnosed under active thyroid - Hashi... - Thyroid UK

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Recently diagnosed under active thyroid - Hashimoto's, bit confusing!

CinnamonNutmeg profile image
6 Replies

So pleased to have found this forum!

I had a routine blood test followed by a call from the GP asking me questions about how i was feeling. I get tired easily but put all symptoms like that down to getting older and haven't really any other symptoms. I had glandular fever age 18 and since then have flirted with fatigue when over doing it. My son and brother are T1 diabetics so I know I'm a prime target for autoimmune delights.

My blood results are as follow (they won't do T3 tests) - test first thing on empty stomach.

Sep 2023

TSH 22.02 (.35-4.94)

T4 8.8 (9-19.1)

TPO 494 (0-50)

IGA transglutaminase 1 (0-10.9)

IGA 2.60 (0.8-4)

I've been on 50mcg Levothyroxine for three months and have not noticed any difference in how i feel. Repeat blood test are as follows (I requested Vit D and B12 which they were happy to do)

Dec 2023

TSH 8.08 (.35-4.94)

T4 12.8 (9-19.1)

B12 707 (200-900)

Folate 5.9 (3-20.5)

Vit D 91 (50-200)

I take Vit D supplements 1000IU and B12 1000ug and magnesium citrate 400mg.

I imagine I'll be getting a call from the GP to up the Levo dose, but have you any advice based on these figures?

And I've read about normal range compared to optimal range but how do you know what is optimal?

I'd be so grateful for any comments!

Thanks in advance!

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6 Replies
Forestgarden profile image
Forestgarden

You definitely need an increase in your levo. Optimal is when you're feeling your best. You really need to have your free T3 measured as well as this is the active hormone. You should be aiming to get your tsh closer to 1. I'm sure someone here will be along soon to comment on your vits

SlowDragon profile image
SlowDragonAdministrator

Yes well you definitely need next 25mcg increase to 75mcg daily

which brand of levothyroxine is your 50mcg tablet

Ideally don’t change brand as you increase

Retest in another 6-8 weeks

Likely to need further increase after that

Have you had iron and ferritin levels tested ?

Look at adding a separate vitamin B complex to improve folate and keep all B vitamins in balance

You can then reduce and probably stop separate B12

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

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

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

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...

CinnamonNutmeg profile image
CinnamonNutmeg in reply to SlowDragon

Thanks , so much info and thanks Forest Garden too! The three months of Levo were MercurePharma, unfortunately I've started the next three months on Accord so hoping I don't get affected by the change. I predict that they won't retest me after any increase for another 3 months but I could be wrong..

Great advice on the Vit B folate, I'll look into that. I'd been taking the B12 in the evening to keep it far away from the Levo but I'll switch it.

I can't find separate reference to iron and ferritin levels but I did have a full blood work up with red, white, platelets etc tested and all were within range so maybe that covers it?

I feel a bit of a fraud as v few symptoms apart from tiredness but the tests don't lie eh?!

I'll come back after I've spoken to my GP if he suggests other than an increase to 75mcg.

I've read about conversion so I guess I can't tell from my results whether I'm converting T4 into TSH - not sure that's right... If my results are still off next test I'll look into having T3 tested privately

Thanks v much

SlowDragon profile image
SlowDragonAdministrator in reply to CinnamonNutmeg

No point worrying about conversion rate until TSH down under 2 and Ft4 at least 70% through range

Brand

Many people find Levothyroxine brands are not interchangeable.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets.

Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

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)

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

March 2023 - Aristo now called Vencamil

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...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator in reply to CinnamonNutmeg

Great advice on the Vit B folate, I'll look into that. I'd been taking the B12 in the evening to keep it far away from the Levo but I'll switch it.

Best to take B vitamins in morning…..at least 2 hours away from Levothyroxine

SlowDragon profile image
SlowDragonAdministrator

Good that GP tested for coeliac already

Poor gut function with Hashimoto’s 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

As your coeliac test is negative you can consider trialing strictly gluten free diet …..in New Year perhaps

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...

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