Bad acid reflux reaction with levo

Hi everyone, I just wanted to ask if anyone else has had an intense burning reaction in the oesophagus with levothyroxine? I started taking it at night (50 mcg) but it still starts acid reflux up really bad regardless of when I've took it. It's the levo that starts the acid/burning and that's forcing me to have to take the omeprazole again which I am loathe to do. I've had enough of feeling this ill so now I've just stopped taking the levo altogether, cos it's just poisoning me.

38 Replies

  • Do you take levothyroxine with one full glass of water. If we don't take sufficient water it can swell in our throat.

    If you are hypothyroid it is usual for us to have low acid because we have hypothyroidism. After a meal you can try either some Apple Cider Vinegar in water or fruit juice or Betain/pepsin tablet with each meal particularly one with meat.

  • Hi shaws thank you so much for your reply. I usually take half a glass of water with it. And thank you for info on ACV and Betaine/Pepsin which I have also had some success with. It's the levo that's causing big problems for me, I feel sure that it now has something in it that my stomach just cannot tolerate. I am now just too afraid to take it because of the havoc it wreaks. Thanks again.

  • If you try taking an anti-histamine tablet 1 hour before levo and if you don't have a reaction pharmacist/GP will need to change the levo you're using as you have an adverse reaction. You might have to try a few or check the ingredients as it's practically impossible to know which ingredient is causing it. So check the ingredients on it against whichever else is available.

    If nothing works Nature-Throid (hypoallergenic) could be prescribed on a named-patient basis if GP willing. They cannot insist you use levo if sensitive. Or he can prescribe T3 on a trial.

  • Hi shaws, I cannot thank you enough for that information, I really can't. I will sort this with gp asap. When I have explained problem with levo they tell me to take more/or try different ppi's!!! To be able to go back and be armed with this much valued information is priceless and deeply appreciated shaws. I don't understand about T3 but I'm willing to learn! You're a star. With many thanks.

  • Some people don't feel an improvement with levothyroxine but the doctors have been told that's all that can be prescribed. They are completely unaware how awful some can feel using it and I can tell you that's it is a great relief when you find something that's compatible with your body. Sometimes it's just the addition of some T3.

  • shaws, I will be putting this to the doc and printing off the 'named patient basis' info from here and showing it to him. Thank you so much for giving me some much needed optimism. Priceless.

  • You mention PPIs. They themselves could ironically be a culprit. I had awful acid reflux while on them..I took them to counter the effects of a daily anti-inflammatory. Since I stopped the PPI (and the anti-inflammatory), I have been better...not perfect but definitely bette...and I am amazed that the pain is not nearly as bad as I had thought it would be, thanks to thyroid meds that work (I am on Nature Throid now having abandoned Levothyroxine). Good luck!

  • stilski, thank you for that info and kind wishes. Glad to hear that you are free from the evils of levo! Well done you.

  • The info you need.

    Don't be surprised if he turns you down because NDT isn't licenced (never has been and is a 'grandfathered' thyroid hormone due to the fact that it never needed a Licence in 1892 and onwards up to levo was introduced in the 50's).

    If any prescription medicine is given it is usually licenced and if there is a reaction for the patient the Company will have to investigate. If it is a named-patient basis and the patient has a problem, I think it's down to the doctor and many wont prescribe. Some will however.

  • Thank you shaws I will bear that in mind. I now have a determination to have Nature Throid. Thank you for the link I will print it out and take it with me for his perusal. I recently had a conversation on the phone with him (as a triage call, he's not my regular doc) re another matter and I asked if he prescribes NDT. He replied that he did not. I said that I had joined Thyroid UK and also that I was willing to pay for it. He said perhaps you could come in and discuss it. He can bet his bottom dollar that I will! I just hope he doesn't knock me back. We'll see eh. Once again, with many thanks shaws.

  • The guidelines set out they more or less have to follow and also the BTA make false statements about NDT too.

    I hope you get on o.k. It's an uphill battle sometimes.

  • Thank you shaws, forewarned is forearmed eh? Ah well, hoist the colours! I will let you know how I get on. Many thanks.

  • Hi shaws please can I just ask you this: what if doc won't prescribe NDT, can I go it alone? (I've had to really lean on receptionist today just to get an appointment, which I've eventually dragged out of her for Thursday. Face palm.)

  • Quite a few members have gone it alone, either with NDT (I had to try several NDTs myself to find one that I felt suited me best). or T3 only. My GP prescribes T3 for me now.

    You could also ask GP if you could add some T3 to your levo as you don't feel well at all (on a trial basis for 3 months). You might find that he might prescribe.

    If not you'll have to decide to go it alone although you will get support from members who are well now because they have had to bypass the NHS.

  • Oh thank goodness for that shaws. I feel to be so 'cut off' by the docs at the moment and having this support from you is so reassuring especially when feeling so awful and weary. Thank you. It is uplifting to know that members have recovered a feeling of wellness and I will hold that thought.

    shaws, I know one thing for sure, that I will never take another levo ever again. So, when you kindly suggested T3, is that something that can be taken instead of levo? I know you said it can be added to levo but I cannot go there at all with levo. Is T3 a possible alternative to levo? Thank you.

  • I've said exactly the same. It was a nightmare for me too and because hypothyroidism was as unfamiliar to me as some star miles above earth I couldn't understand why, on levo, I was much worse than diagnosed with a TSH of 100. I also had severe widespread joint/muscle pain.

    T3 is also called liothyronine which is the Active hormone required in all of our receptor cells. T4 (levo) has to convert to T3 but sometimes for some reason maybe not convert sufficient. If we have a D102 gene we cannot convert T4 at all and have to take T3 only but a member yesterday, taking proof with her of her D102 blood test her doctor paid no attention whatsoever and wouldn't prescribe T3..

    Yes T3 can be taken alone.

  • OMG shaws what a nightmare for you, you have done so very well to battle through this and also had the humanity to want to help others, Bless you. It's clear the NHS is NOT about healing. Also the poor member who has been denied T3 with proof that they need it! What chance do we have to be well apart from under our own steam?! They really need taking to task, it's criminal!

    My daughter has likened this T3 and T4 situation to genes re PA and B12 cyanocobalamin and how useless it is to those who cannot convert it and should be on B12 methylcobalamin as it crosses the blood/brain barrier without the need for conversion in the stomach. My daughter has told them this but it makes no difference to them. Their eyes just glaze over, so she sourced her own for us (long story there).

    shaws, is T3 synthetic too? How did you do on it compared to levo please? Thank you.

  • Yes, T3 is synthetic but I took to it like a duck to water and am well now. I feel like I don't have hypo anymore. Of course, you might not be 100% but 95% isn't bad. I've been swimming this a.m. Husband got out of my way this afternoon as I am in 'spring-cleaning' mode :)

    I've not had a gene test but I think I might have a D102 problem because t3 calmed my whole system down. The other day for instance I took my pulse and blood pressure 100/60 pulse 60. On levo 148/? pulse 140bpm. I was in and out of A&E like a yo-yo. Work called ambulance, husband called ambulance. On holiday abroad had to call ambulance - one continuous nightmare.

    I've just signed another Petition which has just been put up.

  • shaws you so deserve to feel well after all that horror and it's wonderful to hear that you feel so good! This info is invaluable and I may now ask for T3 on Thursday .... never say never eh. Oh, I will look for the petition and sign it. Many thanks to you.

  • This is self-explanatory. I'm sure we know much more now than most doctors.

  • This is wonderful and deeply appreciated shaws many thanks indeed. Will get back on here on Thursday. Take care.

  • Hi shaws, today I saw the doc, my daughter came with me and she told him that she was very concerned re my thyroid/cholesterol etc. and told him that I had stopped the levo and was NOT going to take it ever again. She told him that I had joined Thyroid UK, that it was a wonderful organisation and had printed off much info (thanks to you). She asked if he would prescribe NDT and he said no because 'we don't do that'. My daughter then asked about T3 and guess what, he agreed and I've got it!!! He gave me a script for Liothyronine for I month, 56 tabs at 20 mcg, to be taken twice a day. He said that he may be 'knocked back' because of the expense at £300 per month and levo 'costs peanuts'. So, I don't know if I'll get a repeat script as he wants me to take it for three months but only prescribed for one month! Don't know what will happen then. I am in shock at getting T3 and am grateful as I feel so weary. Thank you shaws.

  • That's fantastic news. Well done to you and thanks to the doctor that he listened and his 'vocation' came to the fore for a while anyway if he's prevented from prescribing again. I have just looked and see you were taking 50mcg of levo, if that's the case 2 x 20mcg is too much initially. 20mcg of T3 is equal to around 60mcg levo so you want to go slowly first.

    Start with 20mcg with one glass of water on an empty stomach. I would do that for a couple of weeks then up by 1/4 tablet at a time.

    GPs don't know much about dosing with levothyroxine.

    Also make sure Vit B12, D, iron, ferritin and folate are at a good level as well.

    "I am not medically qualified in any way. I am qualified through my own personal experience with undiagnosed hypothyroidism and , once diagnosed, the statutory treatment regime of the BTA and their guidelines which didn't make me well. - in fact I had even more symptoms and pain but finally recovering my health with the help/advice of and alternative hormone to levothyroxine and comment is not given in my capacity as an Admin of Thyroid UK or endorsed by TUK. Information on the forum is not intended to be a substitute for medical guidance from your own doctor. - shaws"

  • Oh shaws, as ever, so very kind and helpful. Thank you for taking the time and trouble to check my previous Levo mcg, please know that your guidance is so reassuring. I'm really glad you said that about mcg because my daughter felt it may be wrong so I will take 1 x 20 mcg T3 for a few weeks as you sagely advise. I am supplementing with B12, D3, folate (methylfolate) is in my B complex. I don't know what my iron or ferritin level is, and I don't eat meat but may start to eat some chicken now. My daughter also doesn't eat meat but takes pure blackstrap molasses for iron.

    Also shaws, if the doc is 'knocked back' from prescribing can I appeal that decision, given that I have this thyroid condition?

    As always, from the heart, many thanks.

  • You can certainly Appeal because you have a gene deficiency that doesn't convert T4 to T3 so even NDT might not work efficiently also as it has T4 in it.

    We can survive without T4 but not without T3.

  • Thank you for that shaws. Obviously I haven't had a test that proves I have a faulty gene but clearly Levo has done nothing re thyroid function and poisoned me in the process! The doc said that my cholesterol levels have continued to increase (despite me not eating rubbish and feeling so ill with my stomach not even eating as much). The doc insisted that I take a statin but I am not taking the tablets (they too have made me ill in the past) because from what I'm learning here from you good people, I am hoping that being on T3 will help with a reduction in cholesterol level. Do you think this is the right thing to do shaws? I am loathe to take anything that may compromise my taking of T3. I only trust info from here shaws, it's so valued and appreciated.

  • As I mentioned I haven't had a D102 test either but feel I must have because I feel better on T3.

    Yes, let's hope GP will continue to prescribe. Also when your cholesterol level begins to drop that will be another benefit. If he sees you benefiting from it he might keep prescribing T3. Read down this link until you come to hypothyoidism - you can give your GP a copy.

    Just for info you can tick off symptoms list for your GP.

  • Thank you again shaws, such very important info there ..... what are they thinking about re statins, for a kick off I am well over 70! Honestly it makes me shudder. Mine are staying in the box. My daughter is amazed at how helpful and kind you are. And so am I. Heartfelt thanks again.

  • I have taken levo for over 25 years, and after a few months of taking the tablets I developed the same reflux problem, I did not realise that this could be the ptoblem

  • izart, thank you and I hope you sort that reflux out soon.

  • izart it is the doctors/endos who are unaware that most of these symptoms are interconnected with hypothyroidism. Hypo - means slow - and if not on an optimum of hormones our metabolism isn't raised to normal, so we probably have slow heart rate, pulse and temp, constipation, pain and we could go on and on. Hypothyroidism is a whole body disease - everything is connected.

    "I am not medically qualified in any way. I am qualified through my own personal experience with hypothyroidism and the statutory treatment regime of the BTA and their guidelines which didn't make me well. - in fact I had even more symptoms and pain but finally recovering my health with the help/advice of and alternative hormone to levothyroxine and comment is not given in my capacity as an Admin of Thyroid UK or endorsed by TUK. Information on the forum is not intended to be a substitute for medical guidance from your own doctor."

  • Quite often acid reflux is actually low acid in the stomach caused by thyroid/energy production problems that effect the stomach. To test if this is the cause take a teaspoon of bicarbonate soda in a glass of water and monitor your burping for the next 15 minutes. If you burp lots it's not low acid, but if you don't burp or only burp a few times it is. Then you need to take some acid replacement with meals. It is common for people with m.e to take anti acids when really what they need is more acid. When there is low acid there isn't enough to keep the valve that locks acid in the stomach flat and it leaks up into the throat. When there is enough the flap is kept shut.

  • sulamaye, thank you for that, and yes, I have done that test and it is low acid. Thank you for the info. Best wishes.

  • I'm intrigued by this test as I too sometimes get sharp chest pains after eating / drinking alcohol which seem to respond to antacids. I have never been much of a burper so maybe the test will show low acid levels. I'm off to find the bicarbonate of soda :)

  • let me know how it goes. The test procedure was given to me by the Optimum Health Clinic dietician I am working with on my M.E/CFS

  • Constant burping, even before breakfast after having taken levothyroxine. That says enough I think. Has been getting worse, with actual heartburn in the past several months after having been on 50 mcg for about 7 months. Have a feeling doctor will be sceptical when I see him on Friday... Will try the bicarb test. Also worsening stiff knee joints. Yellow card?

  • When my meds are not optimised I always start getting intolerance to bread, acid reflux/indigestion. It one of the signs that I look for that my meds need increasing. I use a NDT.

  • That's certainly something to think about, thank you very much for that waveylines.

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