DIO2 Gene test done and I have faulty gene...need to find a good Endo Nottinghamshire way for T3

After years of feeling rubbish and several Drs appointments each year to complain I still feel symptomatic yet on 150 a day of Levo.....I finally paid privately for dio2 gene test which confirms I have the variation in my gene to convert. Anybody had any luck with Kings Mill Hospital at Sutton-In-Ashfield? GP has referred me today to that hospital. Hoping I get an Endo who is sympathetic/understanding of this DIO2 gene issue. If anyone has any advice or help it would be appreciated.

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13 Replies

  • I'm glad your test was positive as it may open some doors for you. If only they are aware of the DI02 gene test. Maybe phone up the Endocrinology Dept and leave a message for someone to get back to you rather than have a wasted journey.

  • Do you mean that some Endocrinologists will ignore the D102 test results?

  • I believe that some have never heard of it (I could be wrong of course) but a member took proof to her GP and he refused T3 probably through ignorance.

  • Our GP's aren't allowed to prescribe T3, CCG rules. Other CCG's might have the same rules? Endo's and Consultants are allowed to here though. You can find the prescibing rules on CCG websites. Is the Gene widely accepted as proof?

  • If you email louise.warvill@thyroiduk.org.uk and enquire. She is the P.A to Lyn Mynott of Thyroiduk.org. This is an excerpt:

    If your report shows that you have inherited either one or both faulty genes, it may be worth taking your report, along with the research article, to your GP or endocrinologist and asking for a trial of T3 to be added to your levothyroxine.

    Please let us know how you get on by sending an email to enquiries@throiduk.org

  • Your reply prompted me to check out my CCG. Finally found the prescribing list under 'Your Health' and 'Joint Formulary'. Ignored the 'for GP use only' notices and read. Thankyou. PS Motivated me to get political!

  • Great loueldhen, sadly it is political, the CCG's have so much power now they hold the purse strings. it can help to understand the system though. You can also find out what the CCG spend is on long term conditions, gives you an idea what is allocated to thyroid care in your district.

  • Thats interesting. Wasn't aware there can be a gene issue. Where did you have test done? Like you I have felt for years that My meds have not relieved symptoms.

  • Try reading this. It's really helpful. thyroiduk.org.uk/tuk/testin...

    I requested a DIO2 saliva test via the thyroid uk website. The kit gets sent out to you.

  • Can I ask how you actually felt? I'm only asking because I've felt rubbish for years tooWhen the GP asks me to explain how I feel I find it difficult to describe.

  • I have been found to have the faulty DIO2 gene too.

    Only one thankfully - it is possible to have two. It means that you have a problem converting T4 to T3. Therefore I have a low TSH a high T4 (as I am on alternating doses of 100/75mcg and a stubbornly mid-range T3.

    In terms of how I feel......well, I am still suffering all the symptoms that first took me to the GP, low mood, difficulty losing weight despite good diet and regular exercise, lost outer third of eyebrow, tendency to be constipated. In other words Levo hasn't resolved my symptoms.

    As I have the faulty gene I now understand why I have always been chubby from childhood (unlike my siblings) suffered infertility, miscarriage, premature babies, carpal tunnel syndrome and been prone to get every cold going which always turned into tonsillitis or nasty cough, etc. etc.

    Waiting to see the Endo next month with a desperate hope to be offered T3 (even though I know my CCG don't fund T3).

  • Thanks Musicmonkey, that's helpful.

  • Hi

    I have the di02 gene snp too (hetero not homo zygous thankfully); t4 made me feel better than I did (but I felt like death before diagnosis) but I still had symptoms. I'd given up on the NHS by the time I was diagnosed (took 6.5 years) and went to a private endo, with the di02 paper and was prescribed ndt without any problems. He works for NHS as well and said that had I attended as NHS patient he couldn't give me NDT.

    Ndt has changed my life; it took around 6 months to ramp up but I feel better than I have for 10 years (I was ill before I went to the docs the first time but the tiredness had crept up on me and I'd put it down to age)

    So, good luck with your NHS endo, if you can't get t3 or ndt then message me and I'll send details of a London based private endo. I can't say whether t3 will work for you as I haven't tried it but ndt is fantastic (assuming that with levo you still have moments of exhaustion, hair loss, weight gain and brain fog)

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