Levothyroxine

[jezabelle]

I take levothyroxine for my thyroid and I'm a very sensitive coeliac, I have been told they contain gluten, does anyone know which make does not? My Pharmacist said they contain a very small amount, but they still upset me.

[Hidden]

I'm also coeliac and on levo - I'm really sure that if you are in the UK the levothyroxine is all gluten free (please someone correct me quickly if I'm wrong!!!). Watching with interest X

[jezabelle in reply to Hidden]

Thank you for your reply, I seem to get conflicting reports on this.

[Hidden in reply to jezabelle]

I know, I've looked into it in the past desperate for an answer for recurring symptoms but I'm fairly confident we're safe on this one. I'm also stupidly sensitive to gluten, and have (finally, after many years of docs saying "just" IBS alongside coeliac) got a diagnosis of Bile Acid Malabsorption which seems to come alongside coeliac (no idea why). It's been life changing. May well not apply to you, but thought I'd mention just in case. Really good luck - it's miserable I know x

[jezabelle in reply to Hidden]

Thank you, as you will notice in Babette's post there is a gluten free levothyroxine, ask your Doctor to prescribe it. Good luck.

[Babette]

My endo said there's a gluten-free one but it's prescribed on a named patient basis and the patient has to be diagnosed with celiac disease.

[Hidden in reply to Babette]

Can I ask if this is in the UK Babette?

[Babette in reply to Hidden]

Yes, it is. I don't have any details though. The endo suggested gluten might me a reason I can't tolerate levothyroxine but, as I've not been diagnosed with celiac disease (my GP didn't bother to check so I tried an exclusion diet) I can't try the gluten-free version.

[Hidden in reply to Babette]

So are you having to 'put up, shut up' and just take the one with gluten in it?

[Babette in reply to Hidden]

No, I take T3 and don't seem to have a problem with it. The endo only suggested the reason for a T4 intolerance and would possibly have tried a T4/T3 combo if I'd been medically confirmed as having celiac disease.

[Hidden in reply to Babette]

Thanks for updating.

[jezabelle in reply to Babette]

Thank you for that info. I will ask my doctor to prescribe that one.

[vivbr in reply to Babette]

I'm disgusted & horrified at the extent of the power that doctors (& politicians) have on our lives. Why on earth should we justify that we need gluten free medication? Is there an extra cost to the NHS? If so is it much? I doubt it very much, they are just controlling our lives. I've decided to go natural dessicated thyroid medication because of the gluten or lactose in thyroid gland medication. I have to buy it from the US or abroad because our Endos dont have the courage to fight for our cause & choice in medication. If you like I can give the medication names but in private. We are supposed to be a free country!!!

[jezabelle in reply to vivbr]

Good for you Vivbr, some people think I'm talking rubbish when I tell them the levothyroxine I'm on upsets me, my Doctor just tells me to try other makes!! Which I have.

[Ukulelelady1 in reply to vivbr]

If this is really the case, we should start a petition, because otherwise it’s going to have detrimental health impacts on us. You shouldn’t have to get thyroxine from abroad, it should be our right to have gluten free medication!

[Babette in reply to vivbr]

It's not necessarily the endos; some are trying very hard but have their hands tied. NDT isn't licenced in the UK so they're not allowed to prescribe it.

[Ukulelelady1]

Are you in the U.K? If so, there should be no gluten in your thyroxine. Medications in the U.K. with a licence number do not have gluten in them. I take levothyroxine and also have Coeliac disease.

[jezabelle in reply to Ukulelelady1]

Thank you for your reply, yes I live in the UK. I have been told some makes do contain gluten, as a very sensitive Coeliac, they upset my stomach!! My pharmacy is looking onto this for me!

[Ukulelelady1 in reply to jezabelle]

Wow! This is really shocking news! When I was diagnosed quite a few years ago, I specifically asked Coeliac U.K. about medication, because I take a lot of different things, and the information I was given was that if a drug has a license number then it was free from gluten. I will try to contact them later, to see if this is still the case.

[Ukulelelady1]

I’ve just phoned their helpline but due to long queues and high demand they couldn’t take my call, so I have left a message. I will come back to the forum as soon as I have any news.