My endocrinologist has asked I have a DI02 Deiodinase gene test, not available on the nhs, which is fine. I've ordered the test which will determine whether my T4 coverts to T3. I've never felt well on T4 alone and for over 15 years have asked if I could have T3 added. I've always got nowhere. This year I purchased T3 from an endocrinologist in Spain who suggested my conversion could be my problem, my hypothyroid symptoms had never been relieved by T4. I almost instantly felt better, I lost stubborn weight, I wasn't tired all the time, my face was no longer puffy. I looked and felt like me again!!! I cannot afford to carry on buying from Spain and Brexit could be a big problem. This gene test could help me? Has it helped anyone else? I have a glimmer of hope after all these years.
DIO2 (Deiodinase 2 Gene) Genetic Test - Thyroid UK
DIO2 (Deiodinase 2 Gene) Genetic Test
If you are on a phone scroll down and down to Related Posts where there are 10 more similar to yours. On a PC Related Posts are to the right of yours. Hopefully this helps 🤔
If you wish, you can read about my thyroid journey and the part the Dio2 test played by clicking on my avatar which will take you to my profile.
Good luck
DD
It sounds like your endocrinologist is keen to prescribe T3 and looking for concrete proof of clinical need......perhaps your CCG area is particularly difficult about prescribing
Which CCG area are you in
Many of us have had DIO2 gene test. Assuming you test positive, then an increasing number of endocrinologists are recognising the significance
But some CCG areas are still trying to deny patients T3 regardless (e.g. Brighton)
However, if an NHS endocrinologist says you have clinical need you should be prescribed initial 3-6 month trial via hospital pharmacy. Assuming trial goes well then endocrinologist writes to GP to formally request ongoing care and prescribing is taken over by GP. Annual review back with endocrinologist
If you have inherited DIO2 from one parent this is Heterozygous. If inherited from both then result is homozygous
I certainly found it helpful in persuading CCG to agree to individual funding request....but my CCG is better than average
Apparently one endocrine centre in Kent does offer DIO2 gene test on NHS....and guarantees to prescribe T3 if test positive
My endocrinologist in Coventry, he's keen to help me, the fist I've met who is. I could cry. I only hope this shows I don't covert and I can have some T3 and start to feel like me again
Thank you, I felt I could trust him. I've seen so many dr's and endos. Nobody willing to help me. An endo in Spain was great but my sister in law lives there not me. He was paid for privately, I could not keep that up. Professor Martin is great. I was offered Oxford, Milton Keynes or Coventry. All not close to where I live in Northants, I am so pleased I chose Coventry. I will let you K of how the test goes, what time of day is best to do it (saliva test)
Could you give me the name of the T3 you got in Spain? Thank you
In previous threads about T3 in Spain, we have seen it said that:
a) Liothyronine is not ordinarily available in Spain;
b) If someone really does need it, they order Sanofi Cynomel from France as a special order.
Don't take this as a definitive statement - just what has appeared to be the case from what members have posted.
Please can anyone who has a GP or Endo in Spain that prescribes T3 please PM me. I'm willing to pay privately and have the prescription filled elsewhere.
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