This post is just a 'starter' and is meant to generate discussion, which will hopefully give people some pointers for further research into what might be causing their own symptoms.
Please join in and add any information, links to papers, articles etc that you've found helpful for fixing your own symptoms.
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▪️ If your thyroid medication dose is too low, or your T4/T3 ratio isn't right for you, your digestive system is likely to be unable to function at its best. This can be the cause of many problems, not just the commonly mentioned constipation. Many thyroid patients get brushed off with a diagnosis of IBS.
▪️Stomach issues can be connected to the excipients in levothyroxine tablets. For example, lactose used as an excipient in many thyroxine tablets can be an issue for some people even if they can tolerate dairy. My theory is that it's the combination of the hormone (i.e. levo) and lactose in the digestive system that seems to be problematic. (Hormones are not normally delivered in large dollops directly into the stomach.)
▪️Mannitol which is used instead of lactose in some brands of levothyroxine, can cause digestive issues for some people. If the brand of levo you are taking contains mannitol and you have stomach issues, tell your pharmacist to give you a different brand to try.
▪️Histamine intolerance can become a big problem for people taking levothyroxine. It may cause hives, and/or stomach issues. Histamine. is found in many foods, and some drinks such as coffee.
▪️Caffeine. Sometimes people find they can no longer tolerate coffee, and assume it's an issue with caffeine. But tea is often higher in caffeine than coffee. So if you tolerate tea, but not coffee, consider that coffee is high in histamine, which may be the cause of your sudden intolerance to coffee, rather than the caffeine.
▪️Supplements. Lots of useful discussion here on the forum every day about how being hypothyroid may have caused low or deficient nutrient levels, and that taking vitamin and mineral supplements can help you to recover. But, supplements are just as likely to cause stomach issues as foods, especially when stomach acid levels are not optimum due to thyroid hormone imbalance.
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Some links to start off your research:
Syndrome of idiopathic chronic urticaria and angioedema with thyroid autoimmunity: A study of 90 patients sciencedirect.com/science/a...
After various tests I was diagnosed with IBS 7 years ago before starting Levothyroxine. It kind of stabilised only having a few flare ups.
However, my usual brand of Levo was changed by my Pharmacist last month and I have had a flare of IBS since.
I am on a tiny dose of Levo 37.5mcg which normally comprises of Wockhardt 25mcg and 12.5mcg Teva. The Wockhardt was replaced by another brand Hillrose? which is actually Teva. I am not keen on the small dose of Teva let alone getting the whole dose of it.
I am currently under investigation for B12 deficiency and I believe rather than IBS I think I may have SIBO especially after this last bout of digestion problems. I have told my Pharmacy I do not want anything other than Wockhardt 25mcg but they cannot always get hold of it so I am told.
I am on tiny dose of Levo as I am a small person, I did increase to 2 days 50mcg by Endo but my TSH for some weird reason dropped to 0.2 from 1.39 and she freaked so back to 37.5mcg until next bloods.
I don't take any supplements at the moment until I know what is going on with B12.
Personally, I do not think I have any conventional dairy/lactose issues at all. But I have had some feelings of "not quite right" with some levothyroxine tablets. Casting my mind back, I realised that the two makes that I had found best in the past were both German and lactose-free. But I really did not get on with Teva (lactose-free but contains mannitol) so that was out of the frame.
When Aristo Vencamil was launched in the UK, I switched to it. Not because it is German! But because it is lactose-free (and mannitol-free and, as a bonus, acacia-free).
(I currently take Wockhardt as well to make up my dose because it is a pain splitting Vencamil in four. But will switch when new dosages of Vencamil become available.)
This reply isn't meant to be about me. But to encourage you to look at what you are taking. Maybe make some simple notes about exactly what makes you take and any issues you have - or have had.
If it seems sensible, then you could ask to try a different make? Or switch back to the make on which you had felt best? Or just ensure you carry on with what you are now getting!
Amazingly, we now have six different formulations available! More than ever before. More choice but also more chance of getting
No prescriber, no pharmacist, is going to work through this for you. Most of the time, the best you can hope for is co-operation in writing prescriptions and in dispensing them.
An excellent post which I hope will encourage members to research their stomach and digestive symptoms.
It’s important though to think outside the ‘thyroid box’. Consider the very real possibility that your symptoms may be indicative of a condition or illness which you are overlooking. Consult your doctor. Assume nothing.
We tend to get so wrapped up in our thyroid worlds that sometimes we can neglect the obvious.
I came here to say this too I'm a woman of, erm, a certain age and when Peri Menopause started in earnest, I got lots of new allergies, one of them serious and stomach issues, including not being able to absorb nutrients particularly well. HRT (thank the good lord) resolved all of this so when my thyroid symptoms kicked in two years later, it was clear to me that something new was happening and they were connected.
I have chronic urticaria and histamine issues. No one, either in conventional or alternative medicine has ever made the link to thyroid or autoimmune disorder. This has given me lots of food for thought and things to try.
I did have chronic gut issues but for now seem to have resolved these, thanks to a lot of nutritional work.
I'm surprised that no-one alternative has made the connection for you. Mast cells are the immune systems' first responders - if you have autoimmunity your immune system will be misfiring and your 'over'reactions will increase and broaden. Add changes to sex hormone levels and chaos ensues. Mast cells produce many chemicals, inflammatory and not, histamine being just one, tryptase another (important to note for those with osteoarthritis, as it is implicated in cause). Quercetin is a mast cell stabiliser (which I use, along with selected food support such as ginger, parsley, watercress, plus vit C, vit D, magnesium (also a stabiliser), B vitamins are needed for timely histamine clearance. Best wishes.
I’m honestly not that surprised. Yes, alternative health folks have explained the mast cells thing, but no one has ever joined the dots for me to thyroid and autoimmune disorders. Having said that, I really only discovered late last year thanks to this site that my thyroid issues are autoimmune (Ord’s versus other forms of Hashimoto’s). For the longest time my GP tried to tell me I didn’t actually have a thyroid problem and that the private endocrinologist I ended up seeing had been wrong in prescribing me thyroid meds
I’ve tried quercitin and vitamin C. I’ve tried low histamine diet. I also take B vitamins. So far nothing has helped make the urticaria any less bad.
Sorry to hear that. Mind you, unless you've had B12 injections then no one can say if you would get a benefit - oral/sublingual/sprays/patches are not effective for all of us.
B vitamins are yeast derived using a fermentation process. If you are gluten sensitive you may want to research the vitamin B complex. Yeast is a no no for gluten sensitive people.
Please do expand further on why you say 'yeast is a no no for gluten sensitive people'? If you're referring to the fresh and dried yeast typically used in baking, that is naturally gluten free. coeliac.org.uk/information-...
Can you help further by providing a link to some valid evidence that vitamin B complexes are a problem for gluten sensitive people?
WaystarRoyco, This isn't going to solve your chronic urticaria unfortunately, but it does indicate that the thyroid autoimmunity connection is known by NICE / NHS
'the presence of thyroid autoantibodies is associated with chronic urticaria in both children and adults and suggests a diagnosis of autoimmune urticaria. There is evidence that people with urticaria are more likely to have thyroid autoimmunity than people without urticaria.'
Thanks for sharing that RedApple. Don't you think it's baffling that this (like many other thyroid related things) appear to be known by the medical community, yet never get translated into individual patient care?
I can forgive GPs for not knowing everything about thyroid and it's related complications. After all, they are 'general practitioners' and can't be expected to be experts in everything. But I cannot forgive endocrinologists. They are supposed to have studied these things in depth, yet they are so frequently utterly clueless 😡
im not really sure, im still avoiding aggravating foods, but started to feel like it might be helping a little. I suppose the proof will happen if i start reintroducing those foods!
Excellent post! I just wanted to add that it is the excipient ingredient microcrystalline cellulose (MCC) , sometimes listed as Avicel, which causes digestive issues for me. I can tolerate it very small doses but find that it is in so many prescription and otc meds that the effects can literally compound. Took years to figure out MCC was an issue for me but now, I do my best to avoid any meds or supps containing MCC as a filler.
“MCC is partially depolymerized cellulose that's made from wood pulp using acid hydrolysis. It's a white, free-flowing powder that's used as a non-caloric, plant-based bulking agent, emulsifier, and anti-caking agent. MCC has been used for over 60 years as a binder and compression aid in tablets, helping with issues like tablet strength, powder blending, and API degradation. It can also enhance the degradation of drugs that are prone to hydrolysis.”
“Its low bulk density and wide range of particle sizes allow it to bind to other materials, especially active pharmaceutical ingredients that are difficult to tablet. It also has excellent compressibility properties, which can help produce tablets that are hard but still dissolve. Avicel is often used in combination with starch to help tablets disintegrate quickly and effectively.”
Im someone that suffers with hives. I can go 3 months without hives and then get them again and they can last anywhere from 3 days to 3 months … nothing medication or food wise has changed for me so I don’t understand why I keep getting them … The craziest part is when the hives finally clear up it leaves me with a bruise that take 2 or 3 weeks to disappear. Multiple doctor visits and a biopsy that doctors don’t believe the results for … it’s maddening.
so relieved to find someone else with urticaria. I’ve had this all over my torso for the past week for the first time in my life( I’m nearly 80 now). Been on Levo for nearly 30 years and also the usual digestion problems so now gluten free. Have you got any tips on easing the burning from urticaria… finding it very debilitating
A long shot perhaps, but apparently this can happen when first starting vaginal oestrogen. Little mentioned side effect that typically resolves once dose has stabilised. Can't recall where I read this now, but if I find a link I'll add it in case it helps anyone.
Citrus Intolerance (ascorbic acid). This is apparently an uncommon food intolerance, but I know for myself it's very real. I cannot take vit C supplements even in low doses, and cannot eat raw citrus fruits.
(Just adding this in case it provides a clue for someone else. Haven't found a useful internet resource/paper for it yet, will update if I do.)
Adding this link about histamine 'poisoning'. The article doesn't mention thyroid at all, but I experienced issues just like this when I was under medicated on levothyroxine. My GP at the time suggested I was vastly exagerating my symptoms.
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I'm a woman of, erm, a certain age and when Peri Menopause started in earnest, I got lots of new allergies, one of them serious and stomach issues, including not being able to absorb nutrients particularly well. HRT (thank the good lord) resolved all of this so when my thyroid symptoms kicked in two years later, it was clear to me that something new was happening and they were connected.
Newbie
Is it the coffee or the caffeine?
Thyroid and stomach gastritis
