Has anyone have DIO2 gene test and got decsion overturned?

[Hypo101]

 So basically now resorting to having this test done because im getting no better, now getting very bad moods swings and the most amazing girlfriend ever has dumped me because of me hurting her because of these moods swings. I've contacteda charity who heloing me handle complaint but going to order this test tomorrow. Any here haev this tested and managed to get T3? Does this test really tell me if I need T3?

[shaws Administrator]

As the test is relatively new some doctors don't know about it and the BTA I don't think have mentioned it at all.

I believe that some have been prescribed but others haven't. I think the doctor may not as they've been told only levo.

I feel so much better on t3 and had more symptoms develop on leve I might have the gene but never been tested. The only route may be to self-medicate but hopefully you may get a prescription.

[SmallBlueThing in reply to shaws]

I recall seeing a dismissive tweet from an endo attending the conference in Edinburgh last November.

There's this, by Mark Vanderpump, in the December 2015 BTA Newsletter:

"Much of the discussion at the meeting focused on the management of hypothyroidism and L-T4 vrs L-T4/L-T3 which was debated by Tony Weetman and Colin Dayan. The peer-reviewed BTA statement published on-line in Clinical Endocrinology earlier this year and imminently in print was timely.

Prior to the debate and setting the scene Graham Williams had given a most impressive Meet the Expert session emphasising the autoregulation of T3 supply within target tissues and the limitations of the measurement of circulating serum T4 and T3. Inherited variations in the deiodinase enzymes appear to have little clinical impact so the evidence appears to be swaying against L-T3 being of benefit in its current formulation. The BTF have produced a very helpful Q+A to support the BTA statement and provide information to patients to which you can refer."

british-thyroid-association...

[shaws Administrator in reply to SmallBlueThing]

Straight from the 'experts' mouths. Another nail in the coffin?

Dr Dyan appears the more knowledgeable - he also supported Dr Skinner.

[SmallBlueThing in reply to shaws]

Not an endo, a biochemist, and here's the tweet I referred to:

"Good talk at #SFEBES15 on hypothyroidism and the gaping evidence hole that is T4/T3 replacement and dubious deiodinase testing."

Every cloud has a silver lining: Weetman retiring/retired from clinical practice.

[Heloise]

Hi Hypo, I see your T4 was high but have you ever had a FT3 test?  I would think they would do that before a gene test.  I notice you may have PA problems from one of your posts and that may interfere with your conversion of all that T4.    I have a short video or two about dopamine and serotonin which are symptoms of low thyroid.  

People are obtaining T3 and it doesn't seem to be expensive but I'm not in the UK. 

I can't get the videos to post but if you can go to You Tube and search david clark low thyroid reasons, you'll see how your mood relies on good serotonin, and dopamine transmission which regulate mood and anger issues. 

They are only 5 minutes in length so if you want to view them, #1 is serotonin, #2 about dopamine and #17 about adhd.  You possibly could have neck issues which a chiropractor or massage therapist may help and also has an impact on neurotransmitters.

[TupennyRush]

Hi there 

I had the di02 test and used it to get ndt prescribed by a private endo. I took in the research paper that shows that people with the di02 gene snp do better on T3/t4 combo.

Previously I'd done the same with my GP who indicated that sort of thing was the province of an endo

Of the two NHS endos I have seen neither new anything about di02; one dismissed it and the other said that she would be reading the paper and would look up further research.

I'd suggest getting the di02 test because if you have the issue (I do BTW) then you know that t4 is never going to be the complete answer for you. Print out the paper (off thyroid UK site) and take it with you and test results to your next appointment. If that fails then either battle on with the NHS, go private or self medicate 

Good luck

[TupennyRush in reply to TupennyRush]

Knew! Predictive text on phone!

[Hypo101]

Yes because I'm still having all symptoms despite blood tests saying I'm fine.

My last t3 was 6 and that was a while ago

[greygoose in reply to Hypo101]

What was the range for that? Sounds high. If your FT3 is high, what do you think taking more T3 is going to do for you? Sounds more like an absorption problem to me, rather than a conversion problem. Remember, the test only tell you what is in the blood, not what is getting into the cells.

[Hypo101 in reply to greygoose]

Free t3 wasn't that high. Range 3.8 to 6.8 and mine was 6.

[greygoose in reply to Hypo101]

Well, that's high enough to show that you're converting. Unless your FT4 was three times the top of the range. How high do you want it to be?

Just looked at your last post. Your FT4 was just one point over the top of the range. OK, so it's slightly higher than the FT3. But if you had the DOI2 snp, the FT3 would be much lower than that.

As I said, you probably have an absorption problem. All your vitamins and minerals - and your cortisol - need to be optimal to be able to absorb thyroid hormone.

If I were you, I would spend my money on a 24 hour salvia cortisol test, rather than the gene test.

[shaws Administrator]

A positive DIO2 test tells you:-

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

[Musicmonkey]

I have DIO2 faulty gene. Has not immediately secured T3 for me, although endo did say he would put me on a trial initially. Not necessarily because of the DIO2 issue....however he now seems to be back-tracking (perhaps because of CCG edict that they won't allow T3 to be prescribed).

A T3 level of 6 sounds good to me - nearly at the top of the range. You surely have other as yet undiagnosed reasons for feeling unwell?

[Hypo101 in reply to Musicmonkey]

I've had mri of head, other blood tests, never tests and everything has come back good apart from this. Another symtom iv'e been getting lot last few days is really bad hip pain.

Still have symptoms of very dry skin especially hands and head, mood swings pretty badly, fluctuating body temerature, pain all over espically hips, headache.

[Musicmonkey in reply to Hypo101]

So it wasn't Pernicious Anaemia then? You have described hypo symptoms, but I can't understand why you are symptomatic with such a good level of T3.

There must be another explanation that's not so obvious.

[Hypo101 in reply to Musicmonkey]

Around same time i got very sick i was given hep b shots and started thryoid medication so either my cells are not getting T3 needed, my body cant tolerate t4 and medication making me worse or the hep b shots have caused it.

[Musicmonkey in reply to Hypo101]

I really feel for you Hypo101 It is so hard to be in the dark and not knowing EXACTLY why you feel so ill and not being helped by the medical profession.

I hope you are able to get some answers, but I am unsure whether getting the DIO2 will be any help at this stage. It might tell you something, but not the person treating you. Especially because on paper your T3 looks good and therefore it doesn't suggest a straightforward conversion problem.

But hey - I am no expert only a fellow sufferer sharing my experience.

[kjc1tisdell in reply to Hypo101]

If you find out what wrong let me know I have exactly same symptoms and I feel sick and have stomach pains.

kjc1tisdell

[Roadrunnergreg]

Ok here's a very important reason you need your FT3 checked, you need to know if your converting FT4 to FT3 reason is some people have problems as they say making FT3 they can blame it on a made up gene defect called DIO2, 

Now read this to understand the no defect in the genes, yes you may not be able to make FT3. You see that DIO2. Here's why there are in natural Dessicated thyroid hormone (NDT) not just T3-4 but T1-2-3-4 and Calcetonin, now T2 is needed to make Deiodinase this is needed to remove an iodine molecule from T4 to make T3, I believe they know how look at the gene number DIO2 and Deiodinase, and T2, do you believe in coincidences? In this case people in this situation need NDT natural thyroid... 

I'm not medically trained but I read a lot, and I like to know the why, not just the fact of what is... Hope that helps