Thyroids

[Lynnword169]

Hi, last year I was taken off liothyronine after 20 years, I have become increasingly I'll on 140 mugs of levothyroxine, despite going gluten free, sugar free and vegan apart from fish. In desperation 3 days ago I tried thyroid s. I took 1 and a half grains initially a little less in strength than my 140 Levi and whilst i didn't get palpitations or temp raise I felt shaky. I have taken only quarter grain for the last 2 days but still feel,shaky although I feel more alert than I have for ages. I am also dio2 gene positive for both parents do I know I need t3 , I feel a bit scared too, I'm 62 years old btw. Can anyone help

[shaws Administrator]

We have had a Petition going about the withdrawal of T3 to many. Even though the guidelines from the BTA state that if patient is stable it should not be withdrawn, Endos/doctors seem to have made up their mind to withdraw it.

You have to make a visit to your local MP and complain and I'll look up the BTA guidelines and you have to fight your case somehow and many are in the same boat which is more than a disgrace. It has been due to the enormous rise by the supplier of T3 to the NHS - the only licenced T3. Even though there are other non-licenced T3s the doctors wont supply them as they aren't licenced in the UK but are obviously safe to use. The UK T3 increased from about £30 to about £300 per month. They could easily prescribe one of the others but will not. Apparently the BTA site is down at present but luckily this is from a page on the forum. I would insist or threaten action for ruining your health by not providing T3. I myself take T3 only but have been sourcing my own for a while but as you have been prescribed it for years you must be feeling dreadful without it. Extract:

In the FAQ’s for GP’s they state, “Whilst we appreciate the commercial imperative to cut prescription costs, like you, our first concern is that in all cases the clinical needs of the patient should come before financial considerations.”

They also state, “The decision to switch from L-T3 to L-T4 should be based on clinical considerations and should be reached in conjunction with the patient after a discussion of the risks and benefits. Patients established on L-T3 who continue to derive benefit from its use should continue on L-T3. However, patients with uncertain benefits should be considered for a switch to L-T4 and advice should be sought from an endocrinologist on how this can be safely done.”

[shaws Administrator]

Thyroiduk.org.uk is doing their best and read about T3 on the following. If your not a member of Thyrioduk.org.uk you can become one because the bigger the number the more voice we have. As mentioned we have a Petition going forward.

thyroiduk.org.uk/

[shaws Administrator]

If you also have a defective gene there's no way you can convert the T4 into T3, as far as I've read.

[SlowDragon Administrator]

Who stopped your T3 and why. That was directly against guidelines. You should fight to get it reinstated. Definitely contact your MP, in person face to face if possible

Good article to print out from Patients Association

See pages 5-8 especially

patients-association.org.uk...

The British Thyroid Association had put out a very strongly worded guideline in favour of patients being kept on Liothyronine. However the website is down and has been for some time (Conspiracy perhaps?)

Clutter has some other good links

Highly likely you now have very low vitamin D, folate, ferritin and B12. Especially as you are vegan. If they are too low you can not use your thyroid hormones

Have these been tested recently, if so post the results and ranges

Need to avoid all soya

You could get a private prescription for T3 from an endocrinologist. But that would mean cost of private consultation too

French or German T3 is very cheap, but requires prescription. Price £20-£30 for 100 x 20mcg tablets (UK is approx £900 for 100 tablets)

Alternative is put up a post asking for other T3 supply options that don't need prescription and members can private message you

[Clutter]

Lynnword169,

140mcg Levothyroxine is equivalent to 2 grains NDT. You will become very hypothyroid if you are only taking 1/4 grain Thyroid-S.

How much Levothyroxine and Liothyronine combined were you previously taking?

[Lynnword169]

Hi, thanks for your reply, I think it was the colours in thyroid s that I was taking, I am now taking 100 Levi and 10 t3 so I'm back to my 140 dose. I'm wondering whether to get my reverse t3 checked too. The reintro of t3 making me feel a bit shaky but I think it's the right way to go for me so I'm watching my pulse and temp etc