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Thyroid UK
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Found solution but currently distant dream

Hi,

Following years of growing fatigue and diagnosing my own children with many autoimmune conditions. I finally managed to convince NHS I have nearly all the same conditions.

So I have polyglandular syndrome type two. Comprising of Addison's disease, coeliac disease, pernicious anaemia, vitiligo, plus Hashimoto's disease.

I have spent a 18 mths on levo which initially worked . Then seemed to stop working. Had reverse T3 tested which showed I was off the top of the scale.

Found a private Dr who is prepared to provide private prescription for T3.

Stopped levo a few weeks ago and slowly increasing t3.

Therein is the problem. Supply of T3 .

I have read that there is a massive supply problem currently.

I am one of the millions of unpaid carers caring for my two disabled children 168 hours a week. This means I have zero to low budget for long term supply of my own drugs. I note T3 is reasonable price in Europe but that supply is a major issue. No point in even asking NHS gp or endo for supply .

Advice please.

3 Replies
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I am very sorry you've had all of the problems connected to autoimmune conditions.

T3 seems to be scarce in many suppliers. Your GP could prescribe on a 'named-patient' basis for NDT and I'll give you some information. Many wont prescribe as the onus falls upon them alone if the patient should have a reaction. I doubt many do as it is made from pigs thyroid glands and has been used since 1892 without problems and in the UK up until the 60's when Big Pharma could see millions £s or $s could be made by providing levothyroxine, T4 only plus extra prescriptions for the patient had continuing symptoms. NDT contains all of the hormones a healthy thyroid gland would have.

If you could find a sympathetic doctor who would allow you to trial NDT would be good. As the Endocrinology Association has made False Statements about it, I will give you a Rebuttal that a Scientist sent to them but they did not respond - even after three yearly reminders before his early death.

thyroidscience.com/Criticis...

thyroiduk.org.uk/tuk/treatm...

thyroiduk.org.uk/tuk/treatm...

Quite a few of our members source their own T3 but information would have to be sent by Private Message, i.e. if you click on your name you will see a selection of topics so you'd have to put up a new post asking for a Private Message to be sent to you and if there's a response you will see a red bubble beside your name. The same process for T3 too.

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Thank you

What I was wondering re natural thyroid if I can't get or afford t3... is if I'm not converting levo ie T4 to T3 and have high reverse t3 levels then what will happen if I go onto natural thyroid. Will that not make the situation worse ?

Would I need to increase the dose so high to get the affect of the T3 as the T4 part wouldn't be working for me ????

NHS gp will not do anything and I'm about to take to GMC on negligence grounds for randomly stopping hydrocortisone.

Private gp is lovely but can't source t3 but will prescribe.

Reply

Swanagegirl,

There is a shortage of Uni-Pharma T3 but there is no shortage of other makes. Using your prescription to buy UK Mercury Pharma will cost £258+ for 28 x 20mcg but you can use your prescription to buy German T3 Thybon 20mcg which costs €30.15 for 100 x 20mcg from versandapo.de/en/0/7498960/...

If your rT3 is very high then T3 only for 3-4 is the best way to clear it. You can then resume Levothyroxine monotherapy or in combination with T3 after.

If you decide to switch to NDT and are a poor converter the T3 in NDT will overcome any conversion issue. NDT is more expensive than T3.

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