Please read & action.

[Hills]

Dory AndersonThyroid group UK

5 hrs · 

The following was posted on another thyroid Facebook page and the poster has given me permission to share it here. Some of you might be very interested in participating in this and I for one find it a very encouraging development: 

"I hope it is ok for me to post this here. I am really glad this is happening because I believe it is time for action. I received this email today from Sheila at TPAUK:

Dear TPA Member

Some of you may remember that about three years ago, I was in contact with Yogi

Amin (Human Rights Lawyer) who works for the Law Firm, Irwin Mitchell

(Sheffield) 

We lost touch, simply because of the complexities at that time regarding the

changes being made that affected GP’s and the closing down of all NHS Local

Primary Care Trusts, which have now been replaced with Clinical Commissioning

Groups (CCG’s).

Our appeal to Yogi at that time obviously left a lasting impression, because

this morning, after he had been reading about Mary’s case, telephoned me and

said he would still like to help us. What a great day this might turn out to be

– but, it all depends on each one of you.

Yogi has told me that what he needs, in the first instance, is for all those of

you who are not doing well on levothyroxine-only, and who would like to try

either synthetic T3, in combination with T4, T3 alone, or natural desiccated

thyroid extract (NDT) to ask your GP/Endocrinologist if they would give you a

trial of T3 or NDT.

It is important that your GP writes a letter to your local CCG asking if they would fund NDT (because it remains unlicensed in the UK).

If your GP/Endocrinologist refuses to write to your local CCG there is nothing to stop you doing this yourself. You should find the address in your local telephone book. You just need to ask them whether they would be willing to fund

NDT if your GP/Endocrinologist is happy to prescribe it for you. You could also ask them whether they would allow your GP to prescribe you synthetic T3 too and

see what they say.

Once they have responded, (either to you or your medical practitioner) and

whether the response is negative or positive, you should ask for a copy of that letter and send this to Carol [e-mail]. Carol will then send these to Yogi who will decide what action can be taken, depending on their responses. Please remember that doctors cannot withhold any information that is in your medical notes, under The Data Protection Act 1998.

Any future legal action may well depend on you (no pressure there then J ), so please do everything that you can to help our cause

[helvella Administrator]

Was posted the other day:

healthunlocked.com/thyroidu...

[Hills in reply to helvella]

Sorry, have trouble seeing on my phone. Hope everyone does it as this could be our actual chance to change things.

[helvella Administrator in reply to Hills]

No worry - the search facility on the site would not have found it even if you had been able to use that (and it is awful trying to do some of these things on phones). I couldn't find it myself in order to add my comment above!

[Hills in reply to helvella]

Sent an email and five minutes later had a positive reply.

Please everyone do this.

[j5lt in reply to Hills]

I have sent my email direct to my local CCG. I'll post when I receive a reply.

[Hills in reply to j5lt]

Brilliant the more of us do this then send on yo Irwin Mitchell the better chance we have.

[carnation]

Have never asked my GP about this, but have emailed my CCG.

Will be interested to see if I get a reply as one of my GPs is a board member. He knows little about thyroid and has not heard of Armour!!

[j5lt]

Hills thank you for posting this I will definitely be doing this. Private work gp last week told me all my symptoms (I'd taken a full list and pain diary) were typical of women of my age and weight that I should exercise and lose weight and there was no magic pill that would make me feel better. I am now really really angry about what is happening in this country and negligence of medical professionals in recognising our condition and treating us in the best way possible.

[Hills]

I did a similar list with Levo, Armour & no meds. Amazing Armour had about 4 symptoms while other two just could not write everything down. My Doctor read it, nodded & prescribed levo again! Absolute rubbish.

[Hidden]

Ha ha! Just googled my local CCG. The head of it is the woman who told me there was no medical reason for believing T3 would help with my thyroidism.

[Hills in reply to Hidden]

Try & get that in writing please & then send it in, that would be great proof.

[Hidden in reply to Hills]

To whom should I send it? There seems little point in sending it to the CCG (which was my ha ha point).

[Hills in reply to Hidden]

Opps sorry. Blame the thyroid for my brainlessness.

[e-mail]

Thanks.

[JellyJac]

I am about to email my local CCG, (as I know my GP wont as he blames my age and weight for all my symptoms), however my mind has gone blank and I am not sure what to say.... any ideas?

[j5lt in reply to JellyJac]

Did you manage to find something to write? I've just written to my CCG - just explained my age and little bit about my symptoms and dose, then used the ideas in Hills first post which says what to ask for. I hope you do it as well - good luck!

[Hills in reply to JellyJac]

Hope you managed to think of something. But if not I would ask why your Doctor blames age etc when this illness is so massive & can kill. Why in the UK there is an attitude of one tablet fits all and symptoms are not taken into acct.

Hope this helps.

[JellyJac]

Thank you just drafting a letter now, thanks for your input.

[JellyJac]

Done, fingers crossed