Best levo for allergy/histamine issues please?

[GreenTealSeal_]

Hello,

I’m still struggling on, unable to tolerate any levo or levo/lio combo…been getting on for nearly 2 years and I’m fed up to say the least…

I saw an endo this week who doesn’t think I should take thyroid medication at all, altho did say excipients are often the issue. I said I’d already tried liquid levo and then she seemed stumped. And said ‘watch and wait’ and see if TSH gets over 10 then we can reassess.

What is the most ‘gentle’ levo brand out there please?

I have already tried: accord, teva, wokhardt, accord liquid and Cytomel and thybon Henning for t3….and very sadly they are all the same.

Interestingly endo said my estrogen is quite poor/low for someone of my age so she has suggested we trial HRT to see if this helps. I’m hopeful it will seeing as I can’t get off of the combined contraceptive pill without awful symptoms and feeling as though I completely lose my sense of self….and the never having had any periods but that’s a whole other long story!

I’ve also been trialing a low histamine diet but if I’m honest I’m finding this v difficult (losing lots of weight) and not noticing much of a difference symptom wise. The reaction to levo is the same even with this adjustment 😭

thanks for any thoughts or input!

GTS 🦭

[helvella]

Trouble is, gentleness is very subjective! Witness that some love Teva levothyroxine while others feel dreadful on it.

It looks as if Aristo Vencamil is often one of the best UK-licensed levothyroxine tablets. I do not know much about liothyronine because I have never tried any.

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).

📄 dropbox.com/s/bo2jzxucgp9hl...

helvella - Excipients

Details of excipients are in my Excipients document. This includes all excipients identified in UK-licensed thyroid hormone medicines.

📄 dropbox.com/scl/fi/tud6r8f5...

helvella.blogspot.com/p/hel...

If the last updated date of a copy your have downloaded isn’t very recent, please download a new copy!

Last updated 17/10/2024

[GreenTealSeal_ in reply to helvella]

Thank you for replying! From a histamine/allergy point of view I’d hoped someone had some experience but appreciate its pretty niche topic!

I’ll check out the links and do some research. I’ve heard good things about Vencimil too was struggling to find it’s ingredients list on Thyroid UK so will check out these links.

Thanks again!

[helvella in reply to GreenTealSeal_]

All the ingredients of all UK thyroid hormone products are listed in my document!

[GreenTealSeal_ in reply to helvella]

Ace! Thanks again!

[radd]

GreenTealSeal,

Have a look into MCAS (mast cell activation syndrome).

The difference between this and histamine intolerance is mast cells secrete multiple mediators in addition to histamine, whereas histamine intolerance involves the mast cells releasing only histamines. It used to be thought of as rare but now being seen more as an extension of histamine intolerance in various levels and with multiple presentations.

Those of us with Hashimotos are more prone to exaggerated immune responses because of the very nature of autoimmune disease. Long-term exposure to excess histamine stimulates the production of pro-inflammatory cytokines and constant low-grade inflammation. It’s the chicken and egg scenario because research says this chronic inflammation is one of multiple inducers of autoimmune onset, and ongoing drivers.

Intolerance to thyroid meds is awfully common the forum. A mix between the over-stimulated immune system that makes us more reactive, and the underlying gut issues insidiously established by inadequate thyroid hormones and further exacerbated by excess histamine.

As well as following a low histamine diet, I had to up my intake of anti-inflammatory foods such as olive oil, oily fish, berries, ginger, etc, and supplement natural antihistamines such as Vit C and quercetin. I still take between 1-3g of Vit C daily.

A great read is ‘Never Bet Against Occam’ by Lawrence B Afrin. The title is a reference to Occam’s Razor and MCAS’s varied debilitating symptoms/conditions linked by one cause.

[GreenTealSeal_ in reply to radd]

Hello,

Thank you for replying! I will look this book up- thanks!

I do strongly suspect MCAS and have already been trialling quercetin, vit c and vegan omega 3 oil ( I hate the fishy burps from the other one🤢) but I’m just not sure what else I can do about it. The allergy reaction to levo is so severe my gp is referring me to immunology for allergy testing but I wonder if it will even show anything… :/

I feel my gut plays a big part in this too but weirdly I’m not hashis just sub hypo (I had antibodies testing and also US scan, both normal)

Also my female hormones are crap and always have been so I think that plays a huge role also…(estrogen lowish and progesterone low, PCOS, high testosterone and never had a period) I’ve been on contraceptive pill for years as without I end up with awful menopause-like symptoms and high T symptoms which just worsen the longer I’m off and I just become completely mentally and physically crazy. Can’t function at all.

I imagine the contraceptive pill isn’t helping gut issues and endo has recommended we try body identical HRT instead but that won’t be for another 3 months…

So I’m just waiting around feeling awful and hopeless really (sorry to be a downer!)

[RedApple]

I was just reading VIKKI'S STORY on The B12 Society website theb12society.com/vikki-s-s... and she mentions being (wrongly) diagnosed with Chronic Idiopathic Urticaria. I thought of you, so adding this comment in case it's helpful to you GreenTealSeal_ and/or anyone else reading your post.

[GreenTealSeal_ in reply to RedApple]

Thank you RA! I will check it out, thank you!

My b12 levels have always been okish but much better since joining the forum!

[Regenallotment Ambassador]

I am team Vencamil too.

If you have an endo prescription then Roseway can compound you a T3 with rice flour or something that doesn’t set you off.

I’m very allergic to things, sulphites are a major eye puffer for me, in wine, olives, sausages and loads of sauces in restaurants. Worth a look maybe.

HRT I’ve tried many, can’t do patches cos glue gives me hives, gel seems ok, Lenzetto spray is better and less sticky. 100% recommend utrogestan rather than any progestin types. Sleep really deeply and zero reactions. Hope you feel better soon 🙏

[GreenTealSeal_ in reply to Regenallotment]

I have my Vencamil tablets ready to go but waiting until I’m home after Xmas incase of any awful reaction!

That’s great to hear about Roseway doing t3 compounding!!

I’m not really a big olive or sausage fan and gave up alcohol some time back now!

I’ve been getting on okish with estrogen patches but they are causing me histamine issues I think (hoping it settles!) utrogestan seems great for sleep but I do find I’m tired all day too and am feeling massively depressed and very gloomy which is out of character for me…hoping it settles 😔