I get extreme pain from levothyroxine. I was on naturethroid no pains at all but after that went bust, the price of NDT was insane so I couldn't afford it. I'm now on levothyroxine and it's he'll. The agony in my stomach from these pills is no joke. I thought I had stomach cancer but switched to Teva. Much better and immediate pain reduction but the pains are starting up again. It is 100% the medication. If I don't take it - no pain. If I take it I can hardly breathe. I'm on 100% replacement. Any advice?
Many thanks 😊 🙏
P.S. I've messaged someone this morning who reported reasonable prices for getting a private NDT prescription as the prices I've seen are horrific and out of my reach. One costed out to over £1000 to get to a prescription point let alone even getting the stuff.
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Confoozled
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Ndt privately is a huge financial commitment. I'm fighting to get my ndt back on the nhs. They prescribed it for 13years and ive been settle on it for 16yrs. So you have all my sympathy.
To get it back on the nhs is not easy. I've been through a long process so far- now at stage of an IFR (funding request) which has to go through my ICB panel.....that's a three stage process. You need shared care in place and a nhs Endocrinologist to support ndt treatment plus willing to make an IFR for you. And if you have private treatment you are automatically disqualified from being eligible for nhs funding. Meanwhile no script for ndt for 9 months currently. Who knows if I'll ever get it. Minor miracle if I do.....that and an awful.lot of legwork. I'm exhausted from the stress
You are not the first to say something similar - but the precise product can make a big difference.
My UK medicines document lists all approved UK thyroid hormone products including all excipients.
Please put in Yellow Card reports on EVERY levothyroxine product that has caused you issues.
I've recently posted about issues which though rare, can occur. But note that in at leats one case, the presence of one seemingly unimportant substance made all the difference - even within the one manufacturer's products.
Liver Injury Induced by Levothyroxine in a Patient with Primary Hypothyroidism
More recently, several members have found they tolerate Aristo Vencamil better than the other levothyroxine products they have taken.
helvella's medicines documents (UK) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines licensed 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 liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK-licensed products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), British National Formulary, NHS Drug Tariff, etc. PLUS how to write prescriptions in Appendix F.
Also includes links for anti-thyroid medicines (but not product details).
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
How much levothyroxine are you taking
what are your most recent thyroid and vitamin results
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Stomach Problems caused by Levo?
switching from levo to NDT troubles
