I wrote a post a few months back as my GP in Somerset withdrew my Liothyronine mainly due to the cost.
About 7 years ago I was put on T4/T3 combination, following a private appointment with an Endocrinologist. The addition of T3 was amazing and I enjoyed a good level of fitness and was able to return to work and generally enjoy life. I was devastated when my GP withdrew my T3 last October and I wrote to the GP surgery and also my local CCG to appeal this decision, but they were adamant that T4 was the recognised treatment for hypothyroidism.
From information provided on this forum, I decided to have the DIO2 gene test. My results came back today indicating that I do have a faulty gene and am unable to convert T4 to T3.
I just want to say a very big THANK YOU to everyone for all the information you provide. I would never have known about this test without this community so thank you again.
I will now go back to my GP and hopefully can persuade her that I need T3! At least this time I have some ammunition!
Best Wishes
Written by
Pookie50
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Well done for your perseverance! Good luck with your doctor. I hope you get your t3 reinstated. Something has to be done about the treatment guidelines!
How have you managed to survive without your T3 since last October? That's a long time.........surely there would have been some deterioration that your GP should be able to see? I wonder if she knows what T3 does in comparison to T4.......GPs seem to be blinkered......I despair.
Thank you for asking - I bought a supply from Mexico so have been self medicating. I told the GP and she seemed happy with this arrangement, in fact she asked me where I got it from so she could let her other patients know!
Thanks for replying.......at least that implies that your GP is accepting the role that T3 has to play .......strange that she originally stated that T4 was all that was needed.Let's hope that eventually NHS guidelines will move forward and that T3 and NDT will be accepted as being alternative treatment for the thousands for whom T4 Levothyroxine alone does not work.
I hope you soon return to good health again.Good Luck.
I think her hands are tied to a degree. She has been very apologetic and I get the feeling that if it was up to her she would have continued to prescribe T3. It is going to be very interesting to see the response to the gene test. Another letter to the CCG may also be necessary.
Sadly I think you are right as a senior nurse in our surgery once said to me that they have their hands tied and I know that she has personal interest in Thyroid related problems.
All the best for your gene test results and following treatment.
I am hoping to see my GP tomorrow (if there are any appointments available), but I expect she will have to put it to the rest of the GP's in the practice before a final decision is reached.
It's financial plus the fact that the recommended treatment for hypothroidism is T4 monotherapy, which is madness as it leaves so many people feeling very unwell. We can only hope that one day they will see the light.
As someone who was prescribed T3 by my GP in addition to the T4 I was already taking on the strength of the DIO2 test I would be very interested to see how you get on. I do hope that there is a positive outcome for you.
I don't understand how the DIO2 test is a) not more widely known about in mainstream medicene and b) not available on the NHS. It is mainstream knowledge that the deiodinase enzymes are responsible for converting T4 to T3 in many sites around the body. No endocrinologist could refute that. If this process is impaired by genetic problems that are quantifiable, I don't see what their problem is.
When I took the test results along to my GP I had pirnted off a couple of research articles. It was all news to her, but I'll give her her due she was very open and said please leave the articles I will have a look at them.
Hi Pookie50. I have to buy my own T3 from Mexico. My endocrinologist reluctantly agreed I did seem to do better on it and said he would monitor me but couldnt prescribe it.
I too had the DIO2 test done and it showed I have a genetic inability to convert T4 to T3. I rang my endo, feeling mightily relieved and thinking I would now be able to get T3 legitimately prescribed.
To my amazement, he was very angry I'd had the test done 'off my own bat' and said I was already on the right treatment (ie t3 only) so why had I had it done? When I told him I wanted it on prescription, he said he would discuss it with me during my end of April appointment.
Surprise, surprise... Here we are in mid-May and my regular appointment has mysteriously been cancelled with no rescheduling!
I expect to find myself in the same position as you having a double negative on gene DIO2 with next set of tests for secondary hypothyroidism to come in july. The only version of T3 allowed on NHS in UK is 20mcg liothyronine with only one brand available If I cannot get it prescribed on a named patient basis I shall have to resort to private prescription or the internet. If this occurs I shall make it known in political circles
I was on 20mcg liothyronine for 7 years from my GP and in that time only went to the surgery twice a year for bloods, which shows how beneficial T3 is for me. The DIO2 gene test has confirmed why.
I understand that the NHS needs to try and save money where it can and prescription meds are one way of doing so but it's a scandal that T3 can be bought over the counter in Greece for 3 Euros for 100 tabs and that T3 costs £120 per 28 tablets in the UK.
Good luck, I hope you manage to get your GP to provide you with the T3 you need.
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