I've just received my DIO2 test results and they show I have the DIO2 faulty gene which means I have problems converting T4 to T3. It's a massive relief knowing I have found out what is wrong with me and why I still feel so tired even though I am on 100mg of Levo, vitamin, mineral and herb supplements. Has anyone taken the test results to their GP and been prescribed T3? I feel nervous about doing this as I don't feel the GP's in my surgery are very supportive and I'm not sure they will have even heard of the DIO2 gene. Any comments welcome, thank you. Jo
DIO2 faulty gene: I've just received my DIO2 test... - Thyroid UK
It might be even more difficult to get T3 now, faulty gene or not. Have you seen Lyn Mynott's post today about the new NICE Guidelines on Thyroid Disease:
I too am homozygous. The endo agreed I could do with T3, but apparently CCG has blacklisted it, and only way he could prescribe was if I saw him privately. And even then, he'd expect me to purchase the ridiculously priced British brand, as apparently I could not be monitored if I self-sourced.
Appalling that in a private clinic it is still the very same individual, with the same training, expertise, clinical license, etc. So I think even endos are on the game making money out of us, who in our desperation to feel better feel we have no option but to fork out the money.
In the end, although I did go for a couple of private appointments, decided it was pointless. The overreliance on TSH did not change. You'd think someone prescribing T3 or NDT would care to adopt a more scientific approach to treatment, but alas, no.
So, give it a go. Some people here are very lucky to find sympathetic NHS GPs and endos, but go with your eyes open...
Email Dionne At Thyroid UK for list of recommended thyroid specialist endocrinologists who will prescribe T3
Are you heterozygous or homozygous DIO2
I get my T3 on NHS getting tested and being heterozygous DIO2 definitely helped in persuading CCG to fund
You have to see an NHS endocrinologist to get Prescribed initial three months trial via Hospital pharmacy
Assuming trial goes well on going care and prescription is carried on by GP with annual review by endo
Roughly where in the UK are you?
So homozygous means you are particularly badly affected having inherited this DIO2 gene variation from both parents
Majority of us on here have only inherited DIO2 from one parent - i.e. Heterozygous
The researchers found that patients on levothyroxine (T4) alone felt worse if the faulty DIO2 gene was inherited through one parent and worse still if they inherited the faulty gene from both parents.
The patients on this study were given T4 only for a set period and then combination treatment of both T4 and T3. The patients who had normal genes did not feel any different on combination treatment. However, those who had one faulty gene felt better on the combination treatment and those with both faulty genes felt better still.
No, a GP is not allowed to initiate any T3 prescription
Initial 3-6 month trial must be through NHS endocrinologist and prescribed via hospital pharmacy. Assuming trial goes well then Endo writes to GP to take over on going care and prescription. With annual review back with endocrinologist
I sent you a pm too
Great! Slowdragon also recommended him to me. I think this is the right route for getting your health sorted for sure. I was diagnosed in 2 consultations. As soon as I took the T3 in April this year, it was like a miracle. I could hardly walk or sit up. I put on 28lbs in a year. Outrageous! I’ve now lost the 28lbs in 6 months and now going the gym 3/4 times a week too. I feel 10 years younger at least. Go see him👍😉 also he ensured I have T3 on the NHS.
T3 also fixed my Cortisol issues!
I expect they will have heard about the faulty gene but in Somerset we struggle to get T3 prescribed at all .....
Probably because they the GP’s have been told that T4 works when it doesn’t.
I can’t remember which Top Endo in the UK has discovered that a percentage (can’t remember how much due to brain fog ) of-those taking Levothyroxine are unable to
convert T4 to T3 and he was very sure in the past that if someone took Levothyroxine it was bound to work.
I was impressed that he’d stood up and admitted it ! also
I was hoping that this statement from him would gather faster momentum .
But be brave and ask for T3 because we need to keep this huge need for T3 going .
I don’t convert well to T3 so asked for a referral to an endo on the NHS, it has taken 6 months for me to get the appointment but when I eventually saw them she prescribed the liothyronine for me no arguments. The GP’s are a different story though, most of them are utterly clueless about thyroid anyway and liothyronine is now a red drug on the NHS so they aren’t allowed to prescribe it anyway.
While on the subject of D102, would one of you please spell it out for me.
IE: is it: D one zero two? ... My Doc says I am thyroid hormone resistant, due to his clinical observations, but I think it would be nice to actually conform it if that if possible . I am in the US and had not heard of that gene or test for the gene until I found this forum. I'm not sure if we have that test in the US.
Is this gene a mostly a "Northern European" thing? ... I am 1/4 English, 1/4 Dutch and 1/2 Swedish.
Hello Jo I have this variant and I actually asked my Dr to help interpret the results ( which was a requirement when I had the test that a Dr helps with this) so I was able to discuss results with my GP who then sought advice from the endocrinologist. Initially they increased my T4 in an effort to get me converting more T4 into T3 but that didn't work. Then I got referred to Endocrinologist who evaluated me ( I do have non responsive coeliac disease too) eventually I was prescribed T3 by the endocrinologist. I would advise you to at least try your GP as once you get on T3 you will not want to stop taking it and it's going to be on your NHS record too which is obviously better. The nice guidelines do acknowledge a need for some to get T3. So it's worth a try. BTW within an hour of taking my first dose of T3 my mind "cleared" and I started to feel different and I had more energy. The other thing I take ( which I do pay for myself) is LDN low dose naltrexone which aids and heals the immune system. I have eventually been able to reduce my T3 dose because of LDN. Good luck!
Here's a good resource for all things LDN. The 'normal' dose is 4.5ml and you work up to that very slowly. There is a pharmacy in Glasgow that will post it out to you, it's about £20 per prescription which is cheaper than many supplements! ldnresearchtrust.org/conten...
Hello Deb's I was originally prescribed 20mcg T3 and was on 100 mcg of T4 but since taking LDN (4.5mg) for 2 years I've reduced to 75 T4 and 10 T3. The LDN website is really helpful ldnresearchtrust.org/what-i...
It's slow a ting you have to start on a very low dose and build slowly and it's really helped me.
It's a very safe drug an opiate antagonist which acts on the immune system so it helps with the underlying condition behind thyroid disease. Take a look at this website which will explain it and how it works and how to get it. Please come back to me if I can help more!
When I got my positive DIO2 gene test results. I did give a copy to my NHS endocrinologist, private Endocrinologist and my GP. It’s scanned and in my NHS file now. I now have been prescribed T3 medication by the NHS Endo who originally was really opposed to giving me T3 even though my bloods stated my T3 was only 8% through the range and my T4 was over the range. TSH was still too high and hypo. My GP was very pleased I had this information as he was fighting my corner against the NHS Endo. My private Endocrinologist had previously given my a successful trial of T3 which also went hugely in my favour. So, for me giving this information out to the Drs involved has definitely been an improvement to my health. Like you I was relieved to know why I had a conversion issue. Now loads of light bulbs have switched on as to why I’ve struggled with various things in my life, especially the past 12 years with being only on T4 Levothyroxine. I have Hashimotos.
I’d use this positive information to your advantage.
Hi Pammy, I've been on 100mg of Levo for 13 years and before I was diagnosed I could hardly walk I was so ill. I'd been going to the GP all of my 20's saying I felt ill and it wasn't until I was 34 I was diagnosed with Hashi's. As soon as I started on Levo, the colour of my face went ashen and I had huge dark circles under my eyes, I felt rotten. I went back to the GP to say the medication isn't working and I feel terrible and they told me there was nothing else they could do for me. I was devastated. I have been researching and paying for private nutritionists, therapists and GP's ever since both nothing has worked and I have wasted a lot of money. I now feel I have found out what is wrong and I really hope this T3 will make me feel better. Jo x
Oh my good god. This is awful. I’m so sorry for what you’re going through. I certainly can understand and have empathy.
I’ve been on Levo 12 years. I kept losing muscle power and collapsing, not fainting, on the floor and couldn’t get up. It happened so many times I’ve lost count. I’d end up in A&E so many times, normally taken there by work colleagues and all they’d say is there’s nothing wrong! I kept saying it’s my thyroid or cortisol they just kept saying it’s not. Even though my cortisol was below range and T3 hardly there. After 12 years I finally found this site and started investigating my own blood results. It was then obvious I wasn’t converting very well T3 only 8% through the range. It also effected my cortisol. I guess it makes sense now. T3 seems to drive everything in my body. After being on T3 for 4 weeks my cortisol went up to 466 at 9am it had been as low as 68 at 9am. I had Synacthen tests so not Addison’s. It was T3 I needed desperately. My heart rate was 42 resting. I couldn’t see very well I had double vision and migraines all the time. Even a neurologist give me a nerve blocker injection in my head to help migraines. I saw 3 neurologists, as NHS Endo who said I had no Endocrine issues had referred me, all found nothing neurological. All said it is metabolic. I’ve decided only yesterday after deliberating for months, that I will be taking action against an NHS Endo for negligence. This should not be allowed. It feels as though these NHS endocrinologists are not trained properly or they are not bright enough to be a proper endocrinologist.
The private Endocrinologist in Oxford is brilliant. Please go and see him soon. The first words he said to me were ‘it’s my job to make you well and I will’ he did within 2 consultations. I’m now at my local gym where I go 3/4 times a week. This is the positive result!!
I’d get bloods done on NHS where possible to keep costs down. T3 medication is not expensive. I pay £60 for a years supply via the Oxford endocrinologist. Go for it. You won’t look back 👍
Id be so grateful if you could pm his details also please..bee on T4 over 20 yrs after RAI not seen endo since..have severe muscle pain all over my body .hives dry skin vitaligo joint pain virtigo at times and TED in one eye..and thats with my taking super for purity tested vitamins and minerals which did help ease some pain...i dont want to endure my life ..would love to know what healthy feels like as i have had thyroid and autoimmu e probs since 6 years old.
I'm so sorry to hear your sadly familiar story...what a waste of life!😥 But I'm glad you now have some direction ~ and don't worry about the T3 not working...it will😊 Once you get the levels right for you, your health will no doubt be miraculously transformed.
For me, it was like being reborn, after decades of pain and disability, and I was able to throw away all the prescriptions I never really needed in the first place. It's incredible to think about how we are kept in the dark about theses very important medical issues, but good for you for doing your own research and getting a result👍 and best of luck to you with finally getting well🍀 x
IMO, many people have this GM but they, nor their clinicians, realize it is the reason for their malaise. Often times, and for long periods of time, these patients are misdiagnosed and mistreated with a slew of other medications that do nothing to help the true inadequate conversion issue. Sadly, they even become suicidal.
I know there are a few ongoing studies and some researchers are leaning toward genetic mutation as being a reason for inadequate T4/T3/FT3 conversion.
Once you acquire the testing, did your endo back you on this? What kind of doctor is working to help you now? One concern I have is that just because there is proof that there is the DIO2 GM, finding the right clinician to work with could be a challenge.
Only when patients find knowledgeable, committed clinicians that are familiar with testing, dosing, treating these patients, is when the patients find relief and solutions.
Hi jo, I haven’t heard or had the test you mention, but I knew that I was not converting t4 to t3, and had not felt well for several years,
My gp was understanding of my comments, I asked him outright for the t3
He said that he could only prescribe if an endocrinologist said I needed. So I went private and had bloods done,
My endo told me that I had hashimotos, had it for a very long time but no one had looked at it!!
Anyway my doctor has funded my t3. I am very lucky, keep talking to your doctor/endocrinologist, build a relationship up if you can. Hope you get it, it changed my life x
I was in your position and used the DIO2 gene results to persuade my GP and endo that I should be allowed a trial of T3, plus of course the blood results that showed my bottom to low range free T3 despite suppressed TSH and mid to high T4, plus ongoing symptoms. I printed out the info from here thyroiduk.org.uk/tuk/testin... and used this as back up to my argument. Although my endo was paid for privately, my local GP supported me getting T3 on the NHS. Have faith!
Like you, I was doing all the 'right' things to support my health and manage Hashi's so was getting frustrated when the T4 didn't really make much difference. I am gluten, dairy and soya free, take the usual supplements and LDN (low dose naltrexone). I've done lots of work on my gut health which has helped a great deal.
I'm sorry to be posting something on the "revolutionary" side here, but the UK is currently in the grip of general election fever where the NHS [albeit preventing its sale to the US] is a major election issue. The NHS is clearly failing such a significant swathe of the population on this issue and thyroid health in general, an issue of predominantly female discrimination, so why is it not being raised in the election????
Can someone please tell me what I am missing here? All it takes for evil to triumph is that good men do nothing. If no one speaks out or speaks to those who can effect a change then nothing is going to change. Why is this issue of female mistreatment [partic when the majority of those who do the caring for the elderly are female and health compromised] not being taken to the media????
I know the feeling re the brain fog - but if we kept it brief - just outlining the way the average sufferer suffers and offering bullet points about the way the system is letting people down [refusal to diagnose on cost grounds / failure to offer correct treatment/people having to self treat etc]
I am so ill at the moment - I seem to "die" a little each more with each passing day to the point where I cannot even manage the most basic of activities and am almost 95% housebound [does being helped to go grocery shopping once a fortnight count??] and yet cannot get a diagnosis. If you knew my back story you would see how tragic this is and if my losses to the economy are scaled up to cover all of us who suffer then what a criminal waste of people's lives this is - all in the name of what??? NHS/BMA dogma and a refusal to bring the practice of the most basic of medicine up to even approaching the second decade of the 20th century.
Sorry I'm ranting I know but I am so frustrated at hitting brick walls every way I turn.
Hi all, I'm not sure everyone that has responded to this post will receive my update but I'll give it a try. I saw a private Endocrinologist in Sheffield (as there are none in Nottinghamshire that take Aviva patients). I showed him my DI02 test results and advised I was still tired even though I was on 100mg of Levo. He said I had wasted my money paying for the test as it means nothing and is not worth the paper it is written on. He said he knows the person that discovered the DI02 gene and even he says it is not worth having done. I was obviously disappointed with his opinion but he did say he would prescribe T3 to me anyway as a trial. I had many tests done before he would prescribe the T3 including Synathen Test, Coeliac disease, TSH, free T4, kidney and liver function etc. The consultant advised to be prepared to pay at least £1000 a year for T3 and said the prescription he has given me for 58 tablets will probably cost me over £100. Previous to this I had ordered T3 from two companies abroad and have been ripped off. They have taken my money and I haven't received the medication. I am so frustrated and angry as I've wasted over £80. If anyone knows any reputable and decent companies I can buy T3 from, please send me a private PM. Thanks so much - and I hope this post helps some people. Jo