coeliac safe Levo?

[Coeliacmama]

I have been taking levo for five years. 6 months into this I was diagnosed with coeliac disease (after my GP accused me of not taking my meds as my bloods kept coming back with no change and I was still very unwell). I asked my pharmacist at the drs to find me a gluten free levo tablet. They said TEVA was the only suitable one. However I have been gaining excessive weight and constantly need the loo. I’ve asked to review this but been told it’s the only solution and that women my age do put on weight due to peri menopause (I’m 45 and live in the uk). Anyone else coeliac found a better Levo treatment?

[Beads]

What dose are you taking? So far as I know generic levo is gluten free, however Teva are the only brand which make a 75ug tablet, so if your dose is 75ug then they’re giving you that brand for the dose, not for the gluten free status. What Teva is though, is one of the relatively few lactose free brands.

Teva is a bit of a marmite brand, some are great on it, some not. I find it gives me splitting headaches, so have it written on the prescription not Teva brand.

Does that help? You’ll get more replies in a bit.

[Coeliacmama in reply to Beads]

Dose wise I started on 50mg then was increased to alternating 75mg one day, 100mg the next. I get my tablets in 25mg tablets so 3 or 4 respectively. I was on any generic brand before the coeliac diagnosis, but TEVA was given specifically as GF (I had wrongly at first assumed I might need a liquid to avoid gluten). I was curious to know from this community if the TEVA tablet works well for other coeliacs and did anyone else experience weight gain on TEVA?

[SlowDragon Administrator]

pharmacist is confusing gluten with lactose

ALL levothyroxine is gluten free

Only Teva or Vencamil are lactose free

Extremely likely to have low vitamin levels with Hashimoto’s and coeliac

What vitamin supplements are you taking

How much levothyroxine are you taking

[Coeliacmama in reply to SlowDragon]

75mg one day, 100mg the next alternate. I have been taking ferritin as low iron due to heavy periods. I take a multivitamin once a day.

[SlowDragon Administrator in reply to Coeliacmama]

multivitamins never recommended on here

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Stop ALL supplements that contain biotin 5-7 days before getting FULL thyroid and vitamin test

Low ferritin suggests you’re perhaps on inadequate dose of levothyroxine and/or very poor conversion of Ft4 (levothyroxine) to Ft3 (active hormone)

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)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

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

support.medichecks.com/hc/e...

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

come back with new post once you get results

[helvella Administrator]

Your doctors/pharmacists seem not very clued up.

All UK thyroid hormone medicines are gluten-free.

Are they confusing lactose-free and gluten-free?

Re Beads comment - there are currently two 75 microgram products - Teva and Crescent with Aristo Vencamil due to be available towards the end of this month.

Personally, and I am neither gluten-intolerant/coeliac nor lactose-intolerant, I prefer Aristo Vencamil.

helvella - Gluten in UK Medicines

A short discussion about how to identify the few UK medicines which might contain gluten or wheat. Also some information about USA and EU.

Last updated 19/07/2024

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

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc. PLUS how to write prescriptions in Appendix F.

dropbox.com/s/bo2jzxucgp9hl...

helvella - World Desiccated Thyroid

Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).

dropbox.com/scl/fi/gx6dmz5i...

helvella - Thyroid Hormone Medicines - RotW

Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.

dropbox.com/s/dliou4fszbegw...

The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.

Last updated 19/07/2024

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

[Coeliacmama in reply to helvella]

Thanks for the information. The pharmacist at the GP seemed very clear with me about the gf nature of TEVA. He said it took him a long time to research it. I will ask again I think.

[helvella Administrator in reply to Coeliacmama]

Well the pharmacist is right that Teva levothyroxine is gluten-free. But so are all the rest!

On the basis that he could have checked the MHRA database (or my document!) in a few minutes, I think he is rather over-claiming for his dedication and time.

And I have no special access which might be available to pharmacists - such as information in their ordering systems, etc.

[HowNowWhatNow]

Iron -

What product are you taking for this?

And how low are your iron levels - ferritin & HB?

This is a common thyroid by-problem.

Three Arrows - a US brand - helps a lot of people here to raise their levels.

[HowNowWhatNow in reply to HowNowWhatNow]

Did your thyroid levels improve much once you started on a GF diet?