Thyroid UK
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DIO2 and the NHS

I tested positive via the saliva test at Regenerus in August 2016. I am under an NHS specialist regarding my thyroid as I don't feel well even though my TSH was showing as 2.57 (0.27-4.20) in September 2016. The specialist was adamant that my Free T3 is fine because it's showing up as 3.75 (3.1-6.85). I didn't know enough about it to discuss it sensibly with him but I understand that the problem is that this faulty gene causes a deficiency of T3 within the cells even though a normal reading will show up via blood testing as in my case.

My Reverse T3 is high at 26.0 (10-24). I've been reading what Isabella Wentz has written about Reverse T3 and she says it should be as low as possible and that anything higher than 15 indicates a problem and one way to lower high levels of Reverse T3 is to get on T3 only medication.

Is there anyone with better knowledge of DIO2 who could comment, also anyone with better knowledge of Reverse T3 please.

Thanking you in anticipation of your help.

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That specialist doesn't appear to be worthy of the name. Can you clarify what dose you are on? And are the 2016 tests the most recent ones?

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Hi, I've had blood tests since 2016 but only for TSH. My dose prior to seeing the 'specialist' was 75 mcg Levothyroxine and I'm now taking 100mcg as advised by said 'specialist'. I'm thinking that it might be better to see a private specialist who presumably would be more worthy of the name!

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You don't say what your fT4 was. The DIO2 polymorphism only has a small effect. I doubt that it causes a deficiency within the cells that wouldn't be reflected in the blood, all T3 comes from the cells (although 20% from thyroid cells). In any event you've lived with this polymorphism since conception, I assume you used to be OK.

I'm not into reverse T3 as noone knows how it interacts with T3, its relative affinity for receptors or how it competes with T3. I don't see how anyone can say anything higher than 15 is a problem, I don't know of any research linking specific rT3 levels with hormone action or clinical response. All you can say is the rT3 looks higher, lower, the same as, normal population. I think the assay is a waste of money.

It would be useful to know your hormone dose and fT4 level.

A TSH of 2.57 is a bit high for a treated patient. You will probably do better on an increased dose and this may give you a higher fT3 also. This would seem the first option, to see if incresing your levothyroxine resolves your symptoms. The 'specialist' should have tried this option. An fT3 of 3.75 is a little low (assuming your fT4 is lowish also), I get the impression this 'specialist' is not much of a specialist.

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Hi Jim, my FT4 was 19.73 (12-22) from blood taken last Autumn and I am taking 100mcg of Levothyroxine. The information I got re the RT3 reading was from Dr Izabella Wentz, Pharm D from America who has done an awful lot of work and has written books on thyroid function.

I used to take 75mcg Levothyroxine but the specialist increased this to 100mcg and I see him this Friday for blood test result taken yesterday.

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Ok so who is monitoring you? Did you have a blood test of any kind 6 weeks after the dose was raised? And simply testing TSH in these circumstances is not good enough. My advice is to get a private blood test that includes TSH FT3 and FT4 and the rest of the thyroid panel if you can afford it or persuade your GP. Getting the GP to do what the specialist has not may not be easy. Until your nutrients and thyroid have been properly assessed we are all in the dark. Unfortunately this is how we are managed by people who don't really understand the thyroid issues that they tinker with.

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The specialist is monitoring me and I'm due for an appointment this Friday when I will find out the results of blood taken yesterday (blood form marked TFT so imagine it will only give the TSH result). I had private blood tests last Autumn including FT4: 19.73 (12-22), FT3: 3.75 (3.1-6.8) TSH: 2.57 (0.27-4.20) so I don't imagine they will have changed that much.

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An fT4 of 19.73 is high enough, any higher and you will start to produce more rT3. I'd stay on the levothyroxine dose that produced the 19.73 figure (100 mcg?). Your fT3 is a little low for an fT4 of 19.73 and TSH 2.57. It is possible that your DIO2 polymorphism (you have this in both genes?) causes this. There is also a slim chance that you are selenim deficient so it would be worthwhile asking for a selenium blood test.

I assume you have symptoms rather than just being concerned about the numbers. It would be useful to know the extent of your symptoms. It would be worth trialing you on a little liothyronine to see how you do.

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When you say about my DIO2 polymorphism being in both genes, do you mean in both parents? If so, yes that's correct. Main symptom is very poor quality sleep which impacts on my functioning during the day, also aching legs and poor bowel function. Think my best bet would be to see a private specialist.

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Yes both parents. I would get your selenium checked first. If you can't just try selenium suppliment for a few weeks. If this doesn't work then ask for liothyronine.

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Thanks a lot Jim. Will try the selenium supplement and take it from there.

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Hi Val26 I suggest you read my profile as I have faulty polymorphism DIO2 and guess you are feeling pretty rough.

We need T3 in the cells and taking T3 has helped me feel so much better. Taking more T4 probably won't help as you will just create problems as you don't convert it well. I still take 50mcg daily now, but my T4 has gone below range. I take 25mcg T3 daily and have raised my T3 towards the top of the range.

The numbers are only important because they support the fact that many of my symptoms have reduced, or disappeared and most importantly, I feel much better.

With respect jimh111 is wrong about DIO2. More research is coming out all the time that supports the importance of the gene.

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Have read you profile Music - interesting - and thank you for attaching it. I'm not keen on self-medicating so when I see a private specialist hopefully they will put me on T3 after re-testing my bloods. Oh yes definitely it's all about how much better we can feel and the numbers only a confirmation of that.

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If only it was that simple. I doubt you will get offered it as the DI02 gene issue is not widely known or understood by the NHS.

But I wish you luck and if you are successful please share as this would give hope to others, including me!

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I was prescribed T3 by the NHS without the D102 test.After 18 years on thyroxine,the addition of T3 has made a huge difference.I now have to self-medicate T3,as the NHS refuse to let me have it now.The endo maintained that with a free T3 of over 4(which I believe is too low for me)I am not demonstrating poor conversion.I am not afraid to self-medicate because I have the support of this forum,even though when I first added T3,in 5mcg doses 3 times a day for 3 days,I ,had a severe reaction & was hospitalized overnight with tachycardia.I did not tell them I was trialling T3,as I did not want my script for T3 cancelled.I now know this reaction was caused by my body being starved of T3,because my heart symptoms from 18 years on thyroxine have radically improved.I now take 75mcgs T4,25mcgs T3.I think NHS T3(Mercury Pharma) is inferior to the T3 I now use(Uni Pharma)

I would also recommend an organic selenium for better bio-availability.I use SelenoExcell,which is bound to yeast.

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The DIO2 polymorphism does confer a small disadvantage in healthy subjects with increased risk (relative risk) of conditions like type 2 diabetes and slightly impaired cognitive ability. This is a polymorphism, not a mutation, a bit like having blue eyes instead of brown eyes. Patients with this polymorphism are less able to convert T4 to T3 (type-2 deiodinase). The Saravanan study found that patients who inherited the polymorphism from both parents were a little worse on psychological wellbeing and responded better to combined L-T4 / L-T3 treatment. The effect of the polymorphism is small, such that they were unable to detect any difference in fT3 levels between the groups with and without the polymorphism.

Since the thyroid produces about 6 mcg T3 and liothyronine is well absorbed (95%) it is reasonable to assume that taking 10 mcg liothyronine daily would more than compensate for the missing T3 from the thyroid and completly resolve any symptoms arising out of the polymorphism. I haven't seen any comments on this forum to the effect that a patient took 10 mcg daily and it resolved all their symptoms. They invariably need much higher doses. They need T3 but not because of this polymorphism. In any event this would not explain why the majority of patients without the polymorphism are just as likely to need T3.

I'm not doubting that many patients (including me) require L-T3 but it is not due to this polymorphism, our symptoms are much more severe than those arising from the polymorphism and we need much higher doses of T3. Musicmonkey, you need 25 mcg L-T3, four times as much as your thyroid used to produce. i don't doubt you need it but the polymorphism is a red herring. This is an academic point but if we want to ultimately discover why we have this problem we need to be precise about what might be happening.

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I can see your argument Jim, although I am reluctant to accept it!

If I believe my gene 'difference' is responsible for my symptoms, it seems more hopeful to argue for treatment. If I can't explain in any scientific way that I need T3, I am less likely to get it prescribed!

Perhaps the fact that we have this polymorphism from birth, and go for many years with an imbalanced hormone system until illness reaches a certain level means we need more T3 to compensate.

Unlike Val and the majority of other sufferers, I do not have auto-immune hypothyroidism.

My TSH on diagnosis was less than 3, and yet my T4 was below range. I really do want to know the reason/s that I became so unwell and why T3 is helping.

Perhaps as a poor converter, it is the harm of the T4, creating reverse T3 that's to blame? As the more Levo I took, the worse my symptoms and dropping the dose of T4 and substituting T3 has made a world of difference.

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TSH being within range while FT4 is below range is suggestive of inadequate pituitary response.

Just because you have the known DIO2 polymorphism doesn't preclude other polymorphisms which might also affect thyroid hormones. Such other polymorphisms might well be completely unknown.

Having said that, I am firmly of the opinion that a trial of T3 with successful outcome should be all that is required. Failing to accept that is nonsense (and non-science) - not having an understanding as to why doesn't mean something is not the case. Refusing despite that is insisting that current knowledge and theory is perfect - something no real scientists would do.

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Don't get me wrong helvella. I am happy to have found an answer (at least a partial one) i.e. taking T3. I am uncomfortable with having to self-medicate and not being treated by the NHS.

That is why I would like answers, particularly those supported by scientific argument. According to th BTA, I need only Levothyroxine!

Apologies Val. I seem to have hi-jacked your post.

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No problem at all Music - you're not hi-jacking at all! The more information that comes in, the more we can learn.

Just thinking, in a hundred years time will they look back in amazement at the way thyroid function was not understood properly by the NHS!

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Musicmonkey,

'My TSH on diagnosis was less than 3, and yet my T4 was below range'. This makes a lot of sense. Your pituitary (strictly the thyrotrope) is underperforming, there can be various reasons for this. I'm in this situation at the moment. I had to take high dose thyroid hormone, mainly liothyronine, to overcome resistance to thyroid hormone for many years. Having overcome that (very long story) I am now in the situation that my hypothalamic pituitary thyroid axis is down-regultated as a consequence of my TSH being suppressed for 15 years.

We find that when our TSH is normal the fT4 is low and so is fT3. Maybe both in their reference intervals but both low. If you take L-T4 the fT4 rises but fT3 falls. More L-T4 and fT3 even lower and you start to get more rT3. This is because the abnormally low TSH fails to stimulate the thyroid (my thyroid is fine) and importantly fails to stimulate type-2 deiodinase. The ideal answer is to restore full TSH function which is sadly not likely. The alternative is to reduce the L-T4 dose and subsitute an equivalent dose of L-T3. This is what you have done and it makes perfect sense.

The DIO2 polymorphism has nothing to do with this but it makes the problem a little bit worse. I know I'm being a pain here, very pedantic, but I feel we need to understand what's going on in order to make progress in the future. I doubt you will find many doctors who understand what is going on. I can quite understand the temptation to use the DIO2 polymorphism as a pragmatic means of getting the right treatment for the wrong reason.

helvella, You are quite right, if the signs and symptoms resolve with L-T3 and not L-T4 then the L-T3 is needed. If this clashes with your theory then the theory is wrong.

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Thanks Jim for your patience and taking the trouble to explain in such detail. I see where you are coming from.

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Interesting!I find 25mcgs of T3 daily with my 75 mcgs of T4 is a world away from the 18 years I spent on T4 only

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Am I missing something here? You have the faulty DIO2 gene but aren't taking any T3 medication? That's nuts!!! You will surely feel awful if you only take T4 - your body can't convert it properly

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Yes that's right marigold, I'm not taking any T3 medication because the NHS 'specialist' says my blood test for FT3 is fine at 3.75 (3.1-6.8). Being as the genetic testing is a relatively new one, it appears that doctors don't understand that even if the blood test for FT3 shows as normal, there can still be a problem on a cellular level. Think I've got that right.

Didn't mention it before on this thread but my Anti-Thyroidperoxidase abs result is high at 74.2 (<34) so it appears I have auto-immune problems to put into the mix!

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I've done it round the other way - I've just done a DIO2 test having taken T3 for the last 15 years. I'm convinced I've got the faulty gene. I think that Reverse T3 means that it's the T4 that isn't converting. You will need to research that or put up another post as to the cause of Reverse T3. Good luck

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Many thanks to everyone for taking the trouble to answer my query. I had my private testing carried out by Blue Horizon in September 2016 which showed the normal range for FT3 to be 3.1-6.8. I've now found out via another source that this range changed on 13 October 2016 to 4.2-6.9. Would have been a good idea for Blue Horizon to have informed those who used them for blood testing of this change.

Apparently the NHS specialist I first saw a few weeks back didn't know this because he said my FT3 result of 3.75 was in range with the pre-change Normal Range of 3.1-6.8!

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Val26 Just so you know, and to avoid confusion the gene is expressed DI (letters) and 02 (numbers).

Also, I think you will find that different ranges are used at different labs around the country, so you always need the blood result and the ranges against which that particular sample has been tested. It sounds like the NHS specialist is talking rubbish through ignorance and/or trying to bamboozle you.

In any event, the aim should be to get your T3 optimum in the range, i.e. in the top third at least of the range, depending on how you feel, so your T3 should be much higher than 3.75 anyway. This is why I figured you are probably not feeling great as it is still too low.

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Brilliant, thank you Music. There's so much to learn isn't there and I feel sorry for those people who don't have the resources or ability to find out for themselves about their thyroid function and have been prescribed anti-depressants, etc. by GPs because, in their eyes, as the TSH is showing up as normal and the patient is complaining of not being well, the answer lies in their mental state!

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DIO (letters) 2 (number).

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Sorry Jim. Have to disagree again. It's DI (letters) 02 (numbers).

Update: I was wrong. It is DIO2. Apologies!

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A PubMed search 'deiodinase dio2' returns 256 papers. 'deiodinase di02' brings up 'The following term was not found in PubMed: di02'.

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Have double-checked and found you are correct it is DIO2. My apologies Jim.

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Up until last week I kept searching on 'DI02' instead of 'DIO2' and eventually caught on. Hence my level of confidence in the spelling !

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I appreciate knowing this important little detail. Thank you!

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Almost there - but it is THREE letters and a number. :-)

DIO2 (not D102 and not DI02) - not very obvious in the type I am seeing here!

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Just to keep you up-to-date with my NHS specialist monitoring. I saw the 'specialist' yesterday and taking the increased T4, i.e. 100 daily, for twelve weeks took my TSH over the limit, so he said to go back to 75/100 alternate days and have my bloods tested every year via my GP and to go back to my GP if my fatigue increases - end of story - bye bye! I was surprised that my TSH was over the limit because when my bloods were tested in April after taking 75/100 of T4 on alternative days for six weeks, the 'specialist' said there was no difference in the level.

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Thyroid Uk have this link for testing.

thyroiduk.org.uk/tuk/testin...

Think I'll get mine done. Just bought T3 on web can't afford to keep buying it. Prescribed by private endocrine but £328 for months supply at Boots!

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