Can't tolerate thyroxine in any form: Hi all... - Thyroid UK

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Can't tolerate thyroxine in any form

Tiredofthis77 profile image
9 Replies

Hi all,

Just wanted to see if there was anyone out there who was in the same situation as me?

I've been battling with my thyroid treatment for years now. Eventually I got sorted a few years ago with the oral suspension Evotrox. However, it was short lived as it was recalled. Since then, after constant battles with my endo and ill health I was lucky enough to be given purified thyroxine from Martindales (with calcium phosphate). That worked for about a year and I've been pretty ill since. Now any time I take any form of thyroxine, I get a very sore, bloated stomach, irritated arm pits, constipation, lethargy, dry skin/dandruff, lack of appetite, palpitations... I could go on but I won't bore you. Anyway, after I stop taking it (I can't tolerate 125mcg for more than three days before it destroys me) i start to feel more human again. I have also been diagnosed with early diverticullitis and I'm only 39.

Is there anyone out there who could shed some light? I'm so undermedicated it's unreal - I haven't properly had meds over a long period of time for 2 years - and I'm worried what damage it's doing to me.

Thanks for reading.

Tired

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9 Replies
Clutter profile image
Clutter

Tiredofthis77,

There are people who are unable to tolerate thyroxine. Ask your GP or endo to prescribe Liothyronine (T3) which you may tolerate.

Tiredofthis77 profile image
Tiredofthis77 in reply toClutter

Thank you for your response, Clutter. I tried this years ago and even the smallest dose gave me palpitations

Clutter profile image
Clutter in reply toTiredofthis77

Tiredofthis77,

It may be worth trying it again at very low dose and build up. I doubt NDT will be helpful because it has thyroxine in it.

Tiredofthis77 profile image
Tiredofthis77 in reply toClutter

Thanks Clutter. Do you know of a safe place to purchase this? I've changed doctors and I can't be bothered wasting another few months battling it out with someone new....

greygoose profile image
greygoose

Yup, that's me! I have to be on T3 only. Can't even stand the T4 in NDT.

Tiredofthis77 profile image
Tiredofthis77 in reply togreygoose

Thank you - really appreciate it

humanbean profile image
humanbean

There are two other kinds of treatment for hypothyroidism - T3 and NDT.

Levothyroxine (T4) is supposed to convert in the body into T3 (the active hormone). Some people can't convert very well, or at all. In that case they may do better taking T3 directly. T3 is officially called liothyronine.

Before Levothyroxine was developed the treatment for hypothyroidism was NDT (Natural Dessicated Thyroid), which is pig thyroid, dried, crushed, and made into pills. (That is the simplified explanation.) It has had a few names but NDT is what patients call it these days. At the time that Levo was developed and patients started being transferred from NDT onto Levo, there were lots of them that preferred the old treatment, and that is still true today.

Unfortunately for us, doctors have decided that the gold standard for treating hypothyroidism is Levo. T3 in the UK is hundreds of times more expensive than anywhere else in the world, so doctors wont prescribe it. NDT is considered by many doctors (if they've even heard of it) to be no better than a herbal medication or a placebo - which is completely untrue. NDT was first developed in the 1890s and was the only treatment for hypothyroidism for about 60 or 70 years, and it worked.

If you can get a doctor to prescribe for you you will probably have to pay for a private prescription. It can cost hundreds of pounds.

The good news is that you can buy T3 and NDT online for quite reasonable sums of money, you just need to know where to buy it safely.

But there are still problems - all kinds of thyroid medication need other conditions in the body to be right. For example optimal levels of nutrients are required - ferritin, folate, vitamin B12, vitamin D. Low or high cortisol also makes treatment difficult.

Tiredofthis77 profile image
Tiredofthis77

Thanks so much for your help!

Tiredofthis77 profile image
Tiredofthis77

Thank you

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