Hello
I’ve just tested positive (CC) for the genetic mutation DIO polymorphism which means I don’t make the enzyme which converts T4 to T3 very well. I already take T3 as I feel so much better on it (now I know why) but it’s SO expensive in the UK. Has anyone successfully campaigned the NHS to have it prescribed?? My (private) endocrinologist says it can be done but she can’t refer me herself … I need to go through my GP and get an NHS referral…
Has anyone done this successfully?
Thanks
There are some folks on here who have done that . It is a bit of a where you live lottery . If you don't try you won't get though so maybe worth pursuing.First hurdle is getting a referral accepted by the endo. The GP can refer you but the NHS endo can refuse to see you if they think the GP should be able to manage. Hopefully this won't happen to you because t3 is endo level management.
Next to be aware of is that not all endos know about or are sympathetic to the Dio 2 test.
Then be prepared if they do agree for them to trial you on combo that they may put you on a trial of 3 months and may decide to alter the doses you are already established on.
Don't be put off by my remarks. I just want you to be prepared in case.
Thanks I appreciate your honesty; I’m prepared that it will be a battle I’ll probably lose. Really rubbish though as the consultant who went through my results talked about the implications of not taking T3 which were a bit rubbish!! I’m not too worried, I can afford it currently… it’s just if it goes up and up and up!! I’ll speak to my GP and see what they say … why is everything in life such a fight!! Yeah I’m not looking forward to if they make me come off it… I did that a while ago to see how I coped… I had such bad fatigue I slept 12 hours a day, exceptionally low mood, constipation, aches and pains… back on T3 and I felt sooo much better!!
Thanks for your response
Roughly where in U.K. are you
Some CCG areas are worse than others
Prescription numbers for England searchable by CCG area
Currently 59,000 in last year. Up from 57,000 two years ago
Typically that’s 6 prescriptions per person per year
openprescribing.net/analyse...
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3
Some are NHS
tukadmin@thyroiduk.org
Price charged to NHS has dropped significantly
Currently £59 per 28 tablets 20mcg
Still way more than Thybon Henning on private prescription at 50-60p per 20mcg tablet
I’ve paid £100 for 2 months worth of 5mg twice a day (but 20 tabs split in quarters) but apparently although I’m feeling better, it’s likely this won’t be enough long term. She’d also prefer me to have 3x a day rather than twice… I can’t split that little pill any smaller! Unfortunately the best NHS gynae locally is the one I see privately who now cannot refer me under NHS frustratingly. I’m Berkshire. Thanks v much, I’ll have a look at this list and see what I can do
Many of us end up on 3 x 5mcg
Cheapest option is to cut 20mcg tablet into 1/4’s
I use a sharp craft scalpel
Yes that’s what I’ve been doing - in quarters and 2 a day; I’ll see what my next results say and see if I need 3… it all feels a bit ridiculous!! Thanks for the advice… at least I know I’m headed in the right direction. I was so shocked it came back positive - I wasn’t expecting that, but it’s so helpful to know why the T4 alone doesn’t help much!
Testing positive for Heterozygous Dio2 helped me get T3 on NHS
But Berkshire is possibly a tricky CCG
berkshirewestccg.nhs.uk/med...
Lol… Berkshire is pretty crap for everything all round! 🙄 thanks v much. I’ll see what I can do
Post discussing current prices for different options
Hi I also have the DIO2 gene and am currently fighting to get it on the NHS I’ve shown the evidence below: guidelines in prescribing T3 and pointed out that my Trust is not following the guidelines p15
thyroiduk.org/wp-content/up...
I also sent this info on DIO2 gene
this gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal.’
thyroiduk.org/deiodinase-2-...
Hope this helps.
Thanks!! That’s so helpful!! I’ll definitely use this. Yeah the blood test showing normal is rubbish isn’t it?? I had normal TSH and T4 (understandably) for years on NHS tests… it’s only when I went private and had extensive ones that they discovered the antibodies and the very very low T3… fingers crossed I can get somewhere with it. Even if it wasn’t free but at a reduced rate… that’d be something!!
Also info showing that T3 is no longer an expensive medication2022 update re Liothyronine no longer being a high cost drug:
Hi. Not an answer to your question (my area do supply T3 on the NHS so I’m very lucky), but how did you get the DIO2 gene mutation test ??
I went through regenerus labs which is recommended on the thyroid uk website (I’ve also used them for other things) … it was £100 for the genetic test and £65 for the consultation to go through the results (I could have had it sent to my endocrinologist but that would have cost me more!) it was a worthwhile expense for me as some closure for all my years of medical problems everyone has told me is in my head… but sadly it seems in my area I won’t get any help 🙄
Rach19 Hi. I 've ordered their Dio2 test this week, and it's £88.00 plus £65.00 for them to do the Support call directly to you as the patient.
Ah thank you. Yes, its definitely all in your head (like it was it mine!!!!)
Oh totally… the PMDD, depression, the excruciating endometriosis pain, the constant weight gain despite eating bugger all, the fatigue, the body aches, heart palpitations, chronic digestive problems… all in my head… 90% of which have disappeared with a tablet twice a day literally the size of an ant… 🙄🙄🙄
Thanks for posting, I need to get myself tested. Just wondering where products such as erfa sit with a genetic problems? am not able to tolerate pharma levothyroxine and liothyronine but have not tried the liothyronine only to date.
I’ve had good results on NDT like ERFA until a bad batch recently. Back on NHS levothyroxine and will talk with endo to find more reliable sources of NDT.
It's as cheap as paracetamol in Turkey.
Lucky you! I bet maybe you have to pay more in medical expenses at the outset though? Or are we just being ripped off in the UK? To be fair I’ve not used the NHS in years… they don’t help with complex womens issues! Wish I could get a rebate on my taxes!! It’ll cost me around £75 a month to get this medication plus another £50 or so for my HRT ☹️ … or maybe I should just move to Turkey?? Or maybe the British government would prefer I give up my already exhausting and demanding job as a special needs teacher for the sake of this medication and they can pay me benefits instead? 🙄🙄🙄
This this this 😬 I’m done with dragging my sorry carcass round a classroom. How GPs think we can hold our shit together with these symptoms I don’t know, I suppose that’s why the medics with Thyroid conditions are so refreshing to follow. Totally hear you on this. Looking at your expenses I’d say a long weekend in Turkey once a year looks nice 🦋💚🦋
I'm in the UK. Research tiromel.
Brain fog do you think? 
A ramble concerning Reverse T3 ratio/ DIO2 polymorphism and dosing. 
DIO2 and the NHS
DIO2 gene testing
DIO2 (Deiodinase 2 Gene) Genetic Test
DIO2 gene
