I’ve a telephone consultation tomorrow with my Endo - probably will be my last one as he can no longer look after me if I self medicate.
However I thought I’d ask him to test me for the DIO2 gene so if this is abnormal he could then prescribe T3 on the NHS and override the CCG? Is that correct? Surely he has a responsibility of care to test me if he can no longer supervise me! Then if the test shows I don’t convert I have a medical need proven for T3 to be prescribed. If not then I’ll ask my GP in the hope he would help.
Just another thought but:
My daughter is also really tired too and has been low in ferritin B12 and vitamin D but her haemoglobin was normal so not anaemic. But maybe she could have inherited the abnormal gene too?
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MissFG
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As far as I know the NHS does not pay out for testing the DIO2 gene. All folk on this forum that I have read about doing that test did it privately. It's a bit complicated if you do decide to go ahead and pay for it. it is a legal requirement to have counselling with your results as some gene test results can be traumatic and life changing. The DIO2 is not really like that fortunately. So the complicated part is that you do not write any doctor's name on the form you are sent after you have paid. You need the results to return to you. GPs and even endo's would not know where to start with counselling following a genetic test - their brains would explode at the mere sight of a DIO2 thyroid gene test result!
I paid for that DIO2 (three letters, one number) test in June 2017 and it returned as a faulty thyroid gene from one parent. I then printed out 6 copies, handed one copy to my GP, she in turn got me an appointment with an endo, I handed that endo a copy of my results, and then she wrote out an NHS prescription for 6 months supply of T3.
I’ve done my research thanks Marigold22 since I read a previous post a few weeks ago but appreciate your comments. But my thoughts are as follows on this:
Firstly, why I should pay privately for a blood test that could support me requiring T3 medically when it is available on the NHS and it’s the CCG blocking it when I have a medical need and the DIO2 could prove this. And there is a section on the NHS website which confirms gene testing is available.
Secondly I’m a single mum on long term sick battling 3 autoimmune diseases and on benefits. I already buy T3 abroad when I really shouldn’t have to and can’t afford private bloods for the DIO2 gene or to monitor my thyroid levels if my Endo can’t supervise me. So I’m in a difficult position that I’m sure many other are on this forum.
If my Endo has been told he can’t supervise me unless I’m on the licensed T3 medication then surely he has a responsibility to check if I can or can’t convert? Or if anything goes wrong then he and the NHS would be liable.
I’m sure the GMC would confirm that all avenues should be investigated before washing their hands of me so to speak and not looking after my health when I obviously don’t convert T4 to T3 very well, and sick and my bloods were evidence of this.
So this is maybe yet another battle I’m willing to pursue not just for me but others in the same position who have a right to a drug which is available on the NHS - which my Endo agrees I should have x
Good luck with that honey. Personally I'm exhausted from all my thyroid related battles. It seems to be us minions versus massive conglomerates / pharmaceuticals / the British government
The problem is that its not really about what's right or wrong The NHS is all about very strict guidelines on what doctors will or won't do. Many conditions they do not believe in, and therefore they won't test for or support people to treat them.
The DIO2 gene is not on the list of things they believe in and support.
Unfortunately MissFG that is THE fact of life for us with any thyroid condition. We have to fight and fight and fight. I had to save up for 2 months to pay for my DIO2 test, then a friend contributed the rest.
Please see yesterday’s Post, and look further down at the reply of Rapunzel – says it all really.
I know it’s been a fight for me the last two years and that’s just with my hashimotos. I also have ongoing issues with lupus and a rare muscle disease Myositis which I’m having to go to Manchester to see a specialist for on Monday.
Nothing is ever easy and although I appreciate the NHS I’m finding anything out of the usual is a battle especially getting a diagnosis and treatment for autoimmune diseases x
MissFG, unfortunately it's not guaranteed that you will get a prescription or that your CCG will acknowledge the test. It's completely at their discretion whether they do.
There have been many stories on the forum of people who get the private test and still don't get prescribed T3.
Well, there are lots of things people who self medicate do that the NHS wouldn't test for or treat for. I guess the simple answer for what the point is, it's to try and get better
It sounds like what you need to do is to fight your CCG. I don't know too much about this, but it is discussed on the forum sometimes. You may be able to appeal their decision. Some people write to their MP and they put pressure on. The new Anthony Toft article criticising current practice might useful. There are also NICE guidelines that say people should be on T3 if they have clinical need. I believe the CCGs are not actually allowed to over-rule doctors, but you will have to dig out the documents to prove it.
I don't know much about NHS genetic testing but I did fall over a document which identifies the tests available from the UK Genetic Testing Network laboratories:
Does not appear to include DIO2. But I'd want to have others check - and I don't know if this effectively means not available, or just not available from this source.
Thank you Helvella that’s a huge help. I’m going to ask it’s worth a try and my last hope before then having to get the test privately. As long as then if it proves I don’t convert he can override the CCG and prescribe me T3.
But I find it hard if the NHS don’t do this genetic test why they’d accept it and use it to override the CCG and prescribe me T3 on the NHS it doesn’t make sense?
I haven’t spoken to my Endo yet that’s why I raised the question. I have my last telephone consultation with him tomorrow. I’m going to ask him to do the DIO2 test for me so he can continue to treat me.
He wants to prescribe me T3 but is unable to because of the CCG. I’m hoping this could help me get round that as he agrees it’s morally wrong I can’t get T3 on the NHS because of cost.
I don't think she is a particularly good endo. I think she was actually frightened of me as I was so knowledgeable
I went to see her armed with 6 print outs - unable to remember exactly what now, but my DIO2 result, the Hippocratic Oath - do not harm starred in red, the BTA's statement that T3 should not be denied if the patient is in need of it despite the cost. I had taken all 6 statements, and put them in order, depending on how much she questioned me and angered me with her ignorance.
However, having said that I have been taking T3 since 1995. But the DIO2 gene surely proves that your body is struggling to convert T4 into T3? You could perhaps email both Regenerus Labs and Genova to get it in writing from them their interpretation of the recommended medication with the faulty DIO2 gene and the reason(s) why.
Well first step is to hear his response! If it’s a no then I’ll put it all in writing initially and take it from there but long term I need they’re help and I’m entitled to it and will prove it anyway I can it’s just going to be a long fight and I’m not sure I have that in me right now with my other disease taking priority but thank you fir your help z
Just a point: having a fault on a gene does not necessarily mean that fault is expressed. So having tested for, and identifying the fault, there is still the issue of evidencing that you don't convert T4 to T3 as a result of the expression of that particular fault. In an ideal world of the NHS being awash with infinite resources, people could be given the benefit of the doubt and prescribed at least a good trial of T3 to see what health benefits, if any, accrue as a result; but sadly we are a million miles away from that a situation.
Yes, the thing is that it's easy to prove a patient is a poor converter as long at they are on T4- only treatment: just look at the full thyroid panel and see if the freeT3 is unexpectedly low given the freeT4.
My Endo wanted to put me on T3 combination treatment a year ago due to poorly converting and bloods supporting this along with my symptoms but he couldn’t. So I self medicated and have done since and 6 months ago due to my symptoms went on T3 only. Now with the hospital removing his care from me I’m upset and stressing what I will do if I’m not monitored.
According to ThyroidUK "Because this faulty gene causes a deficiency of T3 within the cells, the usual thyroid hormone function tests will not show up a problem. This means that your TSH, FT4 and FT3 blood tests will look normal."
Hi AnnT49, thanks for pointing this out to me! There are several of these DIO genes and I am not sure about all of them. The majority of poor converters can be seen in the thyroid panel, I had thought it was all.
I was curious about this so had a quick search around both the forum and web. I couldn't find any other references to poor conversion not showing up in a full thyroid panel, and many references that it will show up, including many by extremely well read members.
The story is complex, so I imagine it's possible that conversion issues that don't show in a full panel could be relevant to some people. But to my knowledge excellent blood tests (freeT3 at top of range) while symptoms persist point far more to resistance to thyroid hormone.
This is an issue with the transport mechanism into the cell, so sufficient hormone is in the blood and sloshing around, but it is not getting pumped into cells where it is needed. As far as I know there is no test that will show up hormone resistance, and the treatment is extremely high doses of hormone.
I’m it clear if I understand you correctly but when I wasn’t converting well my FT4 was over range and FT3 low in range on Levo alone. So blood did show I wasn’t converting very well?
When you are low in b12 and ferritin, then you ARE anemic! Who ever told you that yr daughter isnt, was an idiot!
And what was defined as a 'normal' haemoglobin level??? Because in January 2018 mine was at just 10, and declared normal, and trust me that IS very deficient
What treatment is she getting, if at all for her b12 deficiency? She needs to be on b12 shots ASAP! Otherwise the progression of nerve damage, red blood cell damage, brain cell damage, organ damage etc will continue
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The NHS is all about very strict guidelines on what doctors will or won't do. Many conditions they do not believe in, and therefore they won't test for or support people to treat them. 
DIO2 gene tests positive. Do we know what percentage please. 
DIO2 test
Endo not accepting DIO2 Gene result
