Can't believe I've been prescribed t3 in Wales!

[sulamaye]

I have just come back from the endo I've waited 6 months to see and can not believe that the consultant listened to me and how I've tried t3 only and NDT and he's given me a script for 60mcg t3. He ideally wants my tsh not totally supressed and explained why and the risks and what to look out for in my heart beating- variable gaps between beats is the indicator, not skip then big beat which I sometimes get when hypo - but I think even if my bloods aren't perfect he may well let me have the script anyway as I told him my concerns re: my mental health and bones from being bed and housebound.

I even learned that the Cardiff endo I originally wanted to see has been giving all the Welsh endo's guidance re: if ppl come and ask for NDT even though there is no research to support then let them try it and t4 t3 combos. However the health board are unhappy and want more evidence so may put the kaabosh on those scripts which is mean.

But baisically if you are suffering on t4 only in Wales you may be able to get some help if you can put a good case together.

I am in Carmarthenshire by the way.

[Clutter]

Sulamaye, I'm very pleased for you. Not so happy that healthboards may be able to overrule endos' decisions to prescribe T3 or NDT for individual patients. What's the point in seeing endocrinology specialists if doctors outside of endocrinology can overrule their treatment?

[sulamaye in reply to Clutter]

Exactly, all about price isn't it??? Outrageous.

[anjh-blue in reply to Clutter]

this is what the RCP say...

"(e) The RCP does not support the use of thyroid extracts or levothyroxine and T3 combinations without further validated

research published in peer‐reviewed journals. Therefore, the inclusion of T3 in the treatment of hypothyroidism should

be reserved for use by accredited endocrinologists in individual patients."

[sulamaye in reply to anjh-blue]

so the health board should butt out?

[Lizzy1606]

That is really good news .I have never seen a Endo but the consultant i see at the hospital as mention that i should see one ,due to my kidney function.

I live in Wales would it be possible for you to send me the Endo name and what hospital he is in.So maybe i could try and get an appointment with him.Anyway i am glad it as gone well for you ,its nice to read good news.

[sulamaye in reply to Lizzy1606]

Have pm d u

[Lizzy1606 in reply to sulamaye]

Thanks ,i was going to start self medicating in January with NDT , But the consultant i see told me he would test T3 at next appointment , and yes you guessed it this did not happen.Anyway they lowered my Levo in January my kidney function was 63 . June kidney function 51,i mention that its odd that every time they lower my Levo my kidney function suffers.He had no answers just said maybe you should see a Endo .So i just don't know what to do Self medicate or arrange to see a Endo.

I think you did well better then maybe you would have done with the Endo in Cardiff as he is with the BTA i think.

[sulamaye in reply to Lizzy1606]

He is misrepresented in the press, it's his opinions that are driving the treatment I've been given. This bloke more or less said i am a jobbing endo it's dyan who has been advising us.

[Lizzy1606 in reply to sulamaye]

I am really pleased for you.And he is right endos like dyan need to start to change the way they treat thyroid patients.

[sulamaye]

Can you? He's not a professor if that's what you were thinking, just a plain old doctor, the sort of dr to have with curry.

[Glynisrose]

TSH can be suppressed no matter what thyroxine replacement you are taking. DO NOT let your endo or doctor change your meds levels using blood tests alone.

[sulamaye]

thanks i needed some good luck the bad has been stacking up!

[Diva_4]

Could you pm me too please? I'm in South Wales.

So pleased for you!

D

[afonog]

Hi Sulamaye, what an amazing result. My gp in Ceredigion has continually told me that there is no way to get t3 I wales. Please would you pm me the details of the endo you have seen. Thank you

[heyjude]

Could you pm me too please.

Many thanks

[cc120]

Amazeballs!!!

[Hidden]

Hi, I'm just about to move back to Wales, please could you PM me too? Many thanks,

Liz

x

[sulamaye]

Could everyone who wanted me to pm them please pm me, tell me where you live and what info you want. I have m.e and tracking down each one of you via your profiles is exhausting, and I can't remember what post it relates to when I get a notification 3 months after the thread started. Thanks