For those on thyroid replacement, which do you find best and gluten free?

I wrote to the levothyroxine manufacturers about gluten contents. The only one so far who was decent enough to answer was Actavis. I am on their levo at the moment but I do occasionally suffer symptoms likened to glutening, however it may not be the levo.

They stated that they don't test for gluten content and that there may be contamination from ingredients they use that they order in etc. I felt that if this were a food company they wouldn't be entitled to label their goods gluten free. However I have read from Thyroid UK's site that all UK prescription meds HAVE to be gluten free. So what do others on here do who are hypo, do you take levothyroxine and have any particular brand which you are sure is gluten free, or do you get no problems with Actavis and the other generics.

I would be interested to hear from all on thyroid replacement.

Thanks

Dawn

12 Replies

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  • HI Dawn,

    I take Actavis Levothyroxine without "glutened" symptoms, despite it containing maize starch (the form of gluten in corn often gives me severe gastric cramps). Do you react to Lactose which they also contain? I know early on in a gluten-free diet a lot of people with Coeliac can be intolerant to this too.

    I find Levothyroxine in general is problematic, probably because its a single synthetic hormone (T4) being used to replace FOUR different hormones! It works so much better for me since I became gluten free, I suspect that's because of absorption issues, but I know from other thyroid sufferers that some react to the fillers they put in the tabs.

    If I could afford it I would try and purchase Natural Dessicated Thyroid which is apparently much more effective in thyroid hormone replacement. This can be prescribed on the NHS if you can prove you are actually allergic to the fillers in Levothyroxine, but as its a political Hot Potato you might struggle to get an NHS doctor to prescribe it. I got turned down flat! If you do a search for Thyroid Patient Advocacy they have a lot more info on this.

    I agree, it seems wrong that there isn't more stringent rules for medications. I get glutened symptoms from time to time, but i can usually trace the source. I've just had to give up Green & Blacks Organic chocolate as I've been glutened twice from it, presumably from cross-contamination as there's nothing in the actual ingredients! Best wishes, Rita

  • Thanks Rita

    Yes I was on Thyroid-s before I found out I was gluten intollerant and that I had malabsorption and 2 anaemias so I had to come off the natural thyroid as I couldn't tolerate it not tolerating any thyroid hormones till I got the iron up, was a dodgy time as my thyroid hormones became undectable and I HAD to go on T4 as I could tolerate it wheras couldn't tolerate any T3 including the stuff in the thyroid-s any more. I also have adrenal problems. One thing T3 does is REALLY let you know when something is out of kilter.

    I think I am lactose intollerent also but I still crave milk and do tend to drink it but get bloated. I think it is the minerals I crave. I was on T4 for 15 years but each year I became less well until I got so I could hardly move. Thyroid-s and hc saved my life but I still was housebound. Only found out about the gluten problem 8 months ago when all my nutrients were down and was advised about a GF diet and my digestive system liked it. No GERD yeeehaa.

    I have had symptoms from 'gluten free' chocs also.

    So at the moment I am stuck with T4 till all my blood chemistry is back to normal and I don't get horrendous hyper symptoms from anaemia, T3 pooling from tiny T3 doses

    I also hope that maize starch in levo ss not GM :O

    I trust the pharma companies as far as I could throw Mike Tyson

    hugs

    Dawn

  • I was on armor, and having T3 in it I had heart rate issues. I take a generic levo and a compounded slow release T3 which did well. However now I think the levo may have gluten in it?! Blast the US if it is so bloody wonderful why do they let drug companies run them

  • Good question Ladydawny. FYI Yes all UK prescribed medicines are classed as gluten free. Maize starch is gluten free as are lactose ingredients. However, some coeliacs or people with Auto-immune disease may find that they can't digest corn easily (it's hard for a lot of people to process) and they may fine they have trouble processing casein and lactose as these can be hard for the stomach villi to process. Has anyone on the Thyroid UK site here on healthunlocked given you any tips on Effective GF Thyroxine? It's disappointing that the producers aren't writing back to you - do keep chasing them & let us know the outcome.

  • I have whichever brand of thyroxine that my chemist supplies and have never had any problems at all. My DH flares up at the slightest gluten or cross contamination. If I ever have problems it can usually eventually be traced back to something else. It is so easy to get cross contamination, my last was my mum handling the kitchen roll with gluttened hands and me taking the next sheet...it takes so little if you're really sensitive.

  • Hi there

    yes I suppose it is easy to get cross contaminated. Thyroid UK people seem to be ok with the generic one I am on so if you all manage ok I suppose I am getting other contaminations not from the thyroxine or it is just that I am finding it hard to digest stuff at the moment.

    Thanks so much for your answers and if those places finally answer me I shall let you know the answers on how they check for gluten :)

    take care

    Dawnyx

  • It could be that your digestive system needs a little special care whilst it settles down. I healed very quickly after my diagnosis of cd mainly I think because there were so few gf foods available to buy and the breads were only the long life variety and not enticing. My diet consisted of all home made food of veg/fruit/meat/fish/dairy/rice and pulses. I think the pure ness of he diet aided my gut recovery. Maybe a similar diet would help you.

  • Cheers,

    yes I am only eating natural foods, nothing processed or mass produced so I really do hope it helps as it did with you :) I tried some GF bread on a 'special occasion' and it was stiff dry and awful lol. I don't really miss bread that much to say I used to eat so much of it.

    Been GF now for around 7 months.

    hugs Dawnx

  • Hi again Dawn, Lol, I share your Mike Tyson trust in Big Pharma! Really empathise with your thyroid and adrenal problems, I'm still working my way through them too, HB the lot. I'm fascinated you were on Thyroid S. I was tempted to sell some things to finance it, but have shown so much improvement in a short time being GF that I'm holding off on that for now.

    I'm lucky in a way, I've only been GF a few months now, but despite of having horrendous internal inflammation and digestion problems, after about eight weeks it seemed to calm right down. I do take supplements to strengthen and heal the immune system: good quality fish oils, vitamin D, transdermal magnesium and regular megadoses of Vitamin C (in magnesium ascorbate form (all GF of course).Vitamin C in particular is a natural histamine blocker and magnesium is a natural anti-inflammatory (I use it in a spray and bath soak as its difficult for the body to absorb).

    As Jillp says, maybe your digestive system needs a bit of TLC to settle. Would it be worth trying lactose free milk? I think the bigger supermarkets usually stock it. As I understand it, the lactose problem often recedes once your intestines are healed, which can take over a year.

    Forgot to mention Oats! They also cause a reaction in me, so another one to be wary of if you are looking for hidden contaminants. And while I can tolerate small amounts of corn in Levothyroxine, I've learnt to avoid the Freefrom foods that contain it in big amounts. I use buckwheat & rice cereal and buckwheat & millet pasta instead.

    There are some doctors like Chris Kresser in the States who believe most grains are a no-no for Hashimoto thyroid sufferers because they nearly all have their own forms of gluten and corn and oats have theirs in larger amounts. Rice has the lowest amount, I guess that's why its easier to tolerate.

    Feel free to message me if you want to discuss any of the thyroid stuff further privately. Hugs back atcha :-) Rita x

  • Hang on in there. You are still only just into gut recovery time. It generally takes about a year for the gut to really start feeing better, sometimes longer depending on the damage levels. Same with the thyroid. I was told that I was looking at a good 12months for my body to repair and hat I would always have odd days when I would have dreadful fatigue for no apparent reason. I don't have the energy levels that I used to have or the staying power. Be kind to yourself. Maybe we expect too much too soon xx

  • Thanks jillp

    Yes I am the impatient type, or was, I have had to learn :).

    So some time to wait then, thanks for the warning now I can just eat wholesome food and be pampered ;) sounds good :)

    You are all so nice

    hugs Dawnxx

  • Oh thanks so much Rita :) interesting about the inflammation, my last bloods came back loaded with it and a high Ferritin was part of that with the high Creactive protein.

    I sent a specimen for parasites off to the lab but doubt they will find anything, it is prolly the gut and the Hashis, actually looking at my chart again it was only late August I crashed and went Gluten Free so still a way to go to healing yet.

    I am hoping to get a bath I am only able to shower at mo so I would love to soak in magnesium but I do have a spray.

    Thanks for all the tips Rita :)

    more hugs :)

    Dawnx

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