Dr refused to prescribe T3 - DIO2 Test result

[Pookie50]

Hi all

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

[PinkNinja]

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!

Carolyn x

[Pookie50 in reply to PinkNinja]

Thank you, I'll let you know how I get on.

[Hidden in reply to Pookie50]

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.

[Pookie50 in reply to Hidden]

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!

[Hidden in reply to Pookie50]

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.

[Pookie50 in reply to Hidden]

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.

Best wishes

[Hidden in reply to Pookie50]

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.

[Clutter]

Pookie50, DIO2 impairment may be outside of your GP's understanding. Insist on an endo referral if she refuses to prescribe T3. Good luck!

[Pookie50 in reply to Clutter]

I did mention to her that I was thinking of having the gene test done. Thanks for the advice re endo referral.

[Churchie]

Will be really interested in knowing what the GP says

[Pookie50 in reply to Churchie]

Hi Churchie

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.

I will post their response as soon as I hear.

Regards

[Musicmonkey]

I suggested this forum to a GP I saw yesterday. I hope she reads this post Pookie50. Good news!

[Pookie50 in reply to Musicmonkey]

Thanks Musicmonkey

I hope so too!

[michael172]

There has to be something other than financial reasons for not prescribing T3..... I cant believe we are being hung out to dry (die) by the NHS.....

[Pookie50 in reply to michael172]

Hi michael172

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.

Regards

[MacG]

Hi Pookie50,

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.

Good luck!

[Pookie50 in reply to MacG]

Thanks MacG

You have given me a glimmer of hope that the DIO2 gene test might just be the key to getting my T3 reinstated by my GP. I do hope so.

Regards

[fortunata]

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!

It's enough to drive one up the wall!

[Pookie50 in reply to fortunata]

Hi fortunata

The medical profession never ceases to amaze me. You'd think they would welcome patients who are well informed and want to help themselves.

It feels like a real uphill struggle doesn't it, but we all just need to keep plugging away. Hope you get your appointment soon.

Best Wishes

[janetEB77]

To Pookie50.

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

[Pookie50 in reply to janetEB77]

Hi JanetEB

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.

Regards