Gene D102

[1piglet]

I have written before, but basically I was diagnosed with Hashimotos 17 years ago and think I probably had it 20 years before that! A long fight. I was monitored for years but it was deemed that I did not need medication. I managed my symptoms with gluten free diet, exercise and supplements, and it certainly helped. About 4 years ago I was told I needed medication and went on 25mcg of thyroxine. That is when I started to feel unwell. I was eventually told I that I was under medicated and they put me up to 50 mcg and that is when I became really bad. Recently I discovered that the D102 gene could be faulty and interefere with the T4 converting to T3 and as I am now 67 and have felt bad most of my life I decided to check it out and, in fact,I have inherited the faulty gene - one from each parent. My question is, does anyone have any advice on how to approach my GP. He already thinks I am crazy and is only ever concerned with my T4 and TSH. I need to be prepared for this. I am under no illusion that he will prescribe the T3 that I need, but I am hoping that he is at least willing to write me out a prescription. I am just wondering how much he needs to prescribe. And if I get a prescription - where do I get the T3 from? Thank you for your help.

[Kipsy]

I’m no expert and am still finding my way with this issue but I found out today that I have the DOI2 gene mutation (heterozygous not homozygous, so not as severe as yourself) and I will be using this information to fight for T3 on the NHS because I worry hugely about obtaining future supplies.

Have you looked at the page on ThyroidUK concerning the test for DOI2? There is a link there to the research carried out by Panicker et al which I have printed out to show the NHS endo that I’m seeing in November.

If I were in your position, and I’m assuming that you are in the UK, I would first ask for a referral to an NHS endo. GPs are not allowed to prescribe T3 unless an NHS endo has recommended it. I would then take your DOI2 test results showing proof of your gene mutation, together with any other blood results (I have a spreadsheet of all mine since diagnosis I and it was these that convinced a private endo to prescribe T3 for me) plus a copy of the Panicker research, to your endo appointment.

Should you decide to introduce T3 in the meantime by self-sourcing, I would test TSH, T4 and T3 after 6-8 weeks and ensure that the endo sees these results along with your others. Other members may warn against starting combination therapy before seeing an endo and personally I would wait if you can manage to. To give you some idea of timescale, I saw my GP back in June requesting a referral and the appointment is in November, some five months later.

Please keep us posted about how you get on.

[helvella Administrator Thyroid UK in reply to Kipsy]

Please, folk, the gene is called DIO2 - three letters and a number in that order. delta-india-omega-two

I am not saying this because I don't understand, and most people here will also understand if they know of it at all, but anyone following could pick up the wrong name. Trying to search for further information is made more difficult if the name is wrong.

Most especially, getting it wrong when communicating with a doctor is very definitely a bad idea. You are providing a reason for the doctor to dismiss anything you say.

[Kipsy in reply to helvella]

Thank you so much! For some stupid reason I’ve been saying Dee—oh-eye-2 in my head for ages and congratulating myself (erroneously but thankfully silently !) that I knew it was three letters then a number. Thanks @helvella- I know you’ve replied to others before me who’ve got it wrong and I’m sorry you’ve had to do it again! Dee-eye-oh-2 from now on 😀

[helvella Administrator Thyroid UK in reply to Kipsy]

I just hope people don't think I am trying to be the typo/grammar police.

Try saying to yourself:

De-I-O-dinase. For the gene is named DIO2 because of its impact on the deiodinase enzyme. (The enzyme removes an iodine atom from a thyroid hormone molecule. Which is why it is called that in the first place.) Does that help at all?

[Kipsy in reply to helvella]

Yes that’s a great help, thanks helvella ! And as far as worrying about being perceived as the typo police, anyone who reads this forum regularly will know what a massively valuable contribution all of you admins make. I was diagnosed less than 18 months ago and in that time have learnt so very, very much on here. There’s no way I’d know what I do now without all your wise contributions and I know that very many people appreciate the effort you all put in. Thank you again.

[1piglet in reply to helvella]

Thanks from me too. I, too, should know that, but got it wrong! Very mis-leading. As you say It is especially damaging whilst talking to the Endo! Thank you again for pointing that out helvella.

[1piglet in reply to Kipsy]

Hi Kipsy, so sorry, I thought I had answered this, but it's not here so I must have messed up - I am not very good on these things! Thank you so much for your helpful remarks. I actually live in Spain, but it is just the same as in the UK concerning the prescribing of T3 so I am not hopeful. Here in Spain they automatically refer you to the Endo - but as you say, the list is long. I will definitely print off the paper by Panicker to take along with my report. I don't think I have the courage to start combination therapy before I see the Endo - I have waited a life time - what's another few months! I can't believe that I am seeing the light at the end of the tunnel at last and there is all this fuss over the sourcing of the T3! But at last there is hope. Thank you once again for all your help - I will let you know how I get on.

[Kipsy in reply to 1piglet]

I know exactly what you mean about self-medicating being daunting. I personally think that some endos might prefer to do blood tests before you introduce T3 so that he/she can see the poor conversion for themselves. If you get no joy from whoever you see, then you can always take the plunge and self-source some T3 and give it a go...

Good luck..you’ve got your DIO2 proof to help your cause. Xx

[Angel_of_the_North]

If you talk to GP, don't forget to say that it is D-eye-oh-2, not D-one-zero-2, and ask for an endo referral as only endos can prescribe T3.