Glad I had the D102 test. But!!!!!

[Everdean]

I am very grateful to a couple of people on this site who recommended I have the D102 gene test in view of my blood test results.

But I discovered that I have inherited a faulty gene from both my parents and do not convert t4 to t3. At least not very well.

I have been taking the Thailand thyroid S but still felt very unwell.

I have Hashimotos so that's a double whammy.

In years past my Dr did prescribe T3 for me but it got so expensive to the NHS that they had to stop. Hence my turning to NDT.

The laboratory have said that they hope that the test will have some " clout" with regard to asking the Dr for it again.

However will they do it?

Would it be ethical to ask in view of the present covid19 dilemma?

I have tried buying from abroad but was victim of a scam so it's a bit scary to try again. I have , in the past bought them from chemists when on holiday abroad but obviously can't now because of the virus but also I'm not well enough to teavel.

Any suggestions or advice please?

Thank you.

[DippyDame]

I have the Dio2 polymorphism inherited from both parents.

This might interest you

academic.oup.com/jcem/artic...

If you use the search facility at the top of the page and type in Dio2 it will link you to previous related posts.

It didn't help me to get T3 prescribed (no hope since I need a supraphysiological dose/cost) but it has helped some people get a trial dose, however, that often isn't long enough to properly assess it's effectiveness....it can take months of slow titration. Trials are usually shorter leading to failure and withdrawn T3.

If it has already been prescribed that should have established your clinical need without the genetic test. On what basis did your medics prescribe T3.....or was it a shot in the dark? Cost, I guess!

Do you know if you adequately convert T4 to T3....usually indicated by high FT4 and low FT3.

Sadly most medics are poorly educated in thyroid matters and if you fail to respond to levothyroxine they start to struggle!

Many of us have taken control of our thyroid health and now self medicate. It may help if you start a new post asking about sources of T3. replies will have to be by PM..

On the other hand there is no harm in asking your GP for further prescriptions but be prepared for rejection....make a list of all the points in your favour and argue your case strongly!

Best...

DD

[SlowDragon Administrator]

There are a few members, including myself, who have found Dio2 gene test result has helped in argument to get prescribed T3 on NHS

To some extent, very unfairly, it’s still a post code lottery and depends on which CCG area you are in

Do you have a supportive endo or GP to apply for individual funding request on your behalf

Here’s link to open prescribing website

Analysis of liothyronine prescription rates in England. You can search individual CCG areas

openprescribing.net/analyse...

T3 price is dropping...down from highest point of £260 per 28 tablets

Now about £158 for 28 tablets

If your NHS endocrinologist says/said you have Clinical need you should be prescribed

[SlowDragon Administrator]

By the way it’s DIO2 (letters) not D102 (numbers)

[Everdean in reply to SlowDragon]

Thank you Slow Dragon. Very helpful.

[Littlebee]

Hi Everdean

I took the DIO2 test - my advice is a bit late for you now as you’ve already had it. I got my GP on board before i had the test so the results were sent to my GP to help me to interpret them. (As specified when I had the test).

As my GP was on board they then had to help me with sorting the issue that I had with conversion of T4 to T3 and so i was eventually referred to an Endo who eventually prescribed a T3 trial. This was a revelation and i felt so much better with the addition of T3.

I think once you start on T3 its bad to come off it as your body adjusts - how DR’s can justify taking you off it i will never know. Surely its worth going back to your GP and explaining your issues and asking to go back on it? I had a friend who was taken off T3 - but had problems so the DR did allow her to go back on it as it was a case of trying out to see if it worked.

By the way one GP at my practice was not helpful so i went to a different GP who was helpful.

My advice is don’t give up - and don’t let COVID put you off - your health is important. Good luck.

[Everdean in reply to Littlebee]

Thank you so much Little Bee. Best wishes to you.

[Smogmonster]

I was already prescribed T3 on the NHS, but took the DIO2 test to have as backup evidence if anyone tried to stop it back in 2018 as all CCGs started really clamping down and my original Endo left the area.

My new Endo in 2019 fully accepted my heterozygous results and instructed my GP to include a genetic testing result in my notes as a genuine medical need for T3.

[Everdean in reply to Smogmonster]

Oh that's interesting Smogmonster. Thank you very much.