DIO2 testing: Hello, newbie here with a request... - Thyroid UK

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DIO2 testing

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Hello, newbie here with a request for opinions.

A bit of background that may or may not be of relevance.

I was recently diagnosed as bipolar2. My father was a bipolar I who died by suicide, as did his uncle. My mother has also suffered depression, though not apparently long term (at least that she admits too!)

My cousin has been diagnosed with Iodothyronine deiodinase 2 (DIO2) Single Nucleotide Polymorphism (SNiP), after a very long battle with various GPs and endocrinologists

I led to believe that a few of the symptoms of the DIO2 SNiP is depression, fatigue and gaining weight even on a low calorie diet, and that genetic inheritance is involved. I appreciate that fatigue and depression regularly go hand in hand, but I have to admit that I am starting to draw the conclusion that there may be a correlation between the various elements of my health that are indicated that I may have an issue

My Thyroid tests are what my GP considers normal, and therefore no further testing is required

THYROID STIMULATING HORMONE 1.7 mIU/L 0.27 - 4.20

FREE THYROXINE 17.1 pmol/L 12.00 - 22.00

TOTAL THYROXINE(T4) 84.4 nmol/L 59.00 - 154.00

FREE T3 5.1 pmol/L 3.10 - 6.80

THYROGLOBULIN ANTIBODY <10 IU/mL 0.00 - 115.00

THYROID PEROXIDASE ANTIBODIES <9.0 IU/mL 0.00 - 34.00

However my cousin said she was in the same situation, so my question is it worth having the DIO2 gene tested or does it have no bearing

My question is is it worth testing to see if I have DIO2 SNiP or am I barking up the wrong tree. Apologies for the long post

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15 Replies

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DippyDame5 years ago

Hello and welcome Hidden

You are certainly not barking up the wrong tree!

The Dio2 (three letters and one number) SNP impairs conversion of T4, the storage hormone, to T3 the active hormone.

If the variant is inherited from both parents this, research has proved, further impairs conversion.

The brain needs a huge amount of T3 therefore depletion can severely impact on cognitive function and all that that involves.

Your lab numbers indicate both FT3 (54.5% through range) and FT4 (51%) are low. The slightly higher FT3 makes me wonder if there is a problem with the function of the T3 -receptors, which, basically, draw T3 into the body's cells where it's work takes place. This is called Thyroid Hormone Resistance (or RTH) and can be hereditary.

Should you wish to pursue RTH then I can suggest this ebook which is on Amazon for £3.56 or free if you have Amazon Prime. It is called "Impaired Sensitivity to Thyroid Hormone (Thyroid Hormone Resistance)" by Hugh A Hamilton

An initial trial of Levothyroxine (if not already prescribed) may help to raise your T3...

Conversion is also supported by optimal levels of vitD ,vit B12, folate and ferritin

You may however benefit from the addition of T3 and having a positive Dio2 test may help to convince a medic of this clinical need.

The late Dr John Lowe found himself in a similar situation to yours and researched and became an expert on T3, found he had Thyroid Hormone Resistance (RTH) and needed a huge single daily dose of T3 to relieve his symptoms.

I have the Dio2 snp/homozygous and RTH but I'm going to tag shaws who knows much more about Dr Lowe and his work. Hopefully she will pop up and advise further....she has been a great help to me

Good luck

shaws• in reply toDippyDame5 years ago

Dr John Lowe lost his father and his father's brothers committed suicide as well - if I remember correctly, this is why when Dr Lowe was a young student and had similar feelings that he began to research hormones and found out the importance of T3 in healing of symptoms and pain relief.

He also found out that some people couldn't convert levo (T4 - being an inactive hormone) into sufficient T3 (the Active Hormone and he also found that some were Thyroid Hormone Resistant that meant they couldn't get sufficient T3 from Levothyroxine.

He himself took 150mcg of T3 daily (in the middle of the night) in one dose. It enabled him to have a normal life in work and in health. He would never prescribe levothyroxine - only NDT and to those who were resistant, T3. These people also needed a higher dose than would other patients. After levo was prescribed, instead of NDT, new 'diseases were named, i.e. Fibromyalgia, CFS and ME. Dr Lowe simply raised the dose of T3 slowly until patient recovered.

Of course there's no miracles for some people.

If patients were 'Throid Hormone Resistant' they needed much larger doses of T3 to relieve their clinical symptoms and to enable them to be 'normal' in how their body functioned but our doctors keep us 'within range' as they seem to believe that T3 could cause problems. I think because T3 is the 'engine' they should ensure we have sufficient T3 in all of our millions of T3 receptor cells. Some people prefer NDT as it is made from animals thyroid glands and not synthetic.

Dr Lowe only took one blood test for the initial diagnosis and thereafter small increases of NDT according to symptom relieved (as doctors used to do before blood tests and levo) until patients felt much better and restored to health. Whoever didn't improve on NDT then went on to T3 and it was gradually titrated until they did. Dr L himself took 150mcg of T3 in the middle of the night so that nothing interfered with his dose.

naturalthyroidsolutions.com...

DippyDame• in reply toshaws5 years ago

Will tag Hidden

Thank you shaws I'm sure she will find this useful ...as I did

NWA65 years ago

T4 is only 50% through range and T3 is only 54% through range but I’d always introduce T4 first if you were considering self medicating. Your GP’s are never going to start you on treatment. If you want to get the DIO2 test then it can bring some comfort/answer but I don’t think it will help get treatment.

I think there is for sure a link between many diagnoses and a thyriod that’s poorly functioning

• in reply toNWA65 years ago

Thanks for that NWA6, I have no plan on self medicating as I am Lamotrogene for my BP2, however, I was intrigued by the paper by Vijay Panicker, Genetics of Thyroid Function and Disease (2011)

He suggests that DIO2 SNPs rs225014/rs12885300 are associated with the phenotypes for BiPolar and also to hypertension, which I also suffer from and failed to mention in my original post, although there is conflicting evidence for hypertension

Panicker, V. (2019). Genetics of Thyroid Function and Disease. [online] PubMed Central (PMC). Available at: ncbi.nlm.nih.gov/pmc/articl... [Accessed 20 Oct. 2019].

NWA65 years ago

And you can’t take both? And you’re not thinking that there’s a link between bipolar and poor thyriod function?

• in reply toNWA65 years ago

All I know is that Lomotragene is a mood stabiliser for BiPolar and was originally a epilepsy medication. I don't know enough about it to be able to make an informed decision. As for thinking there's a link, that would be presumptuous, I am a very much a layman and definitely a newbie in all this, save to say that I am really trying to get my head around it all There is a possibility though of a misdiagnosis.

shaws• in reply to5 years ago

Of all of thyroid hormones, liothyronine (T3) is the Active one. Levothyroxine is inactive and has to convert to T3. There are millions of T3 receptor cells in our body and heart and brain contain the most. There are also millions of people who do fine on levo but they will not be on forums for some help/advice.

I couldn't get a diagnosis by anyone at all, A&E, GPs, Consultants (ordinary ones unconnected with thyroid) but they should certain know all of the clinical symptoms but few doctors do these 'modern' times. I had a number of 'diagnoses' but none were correct.

In the past on this forum I have read of people who were incarcerated for their behaviour and brain issues but I am sure they were never checked for FT4 and FT3.

DippyDame• in reply to5 years ago

I've just tagged you into shaws reply which may have some significance

Low T3 is, in extreme, a very serious condition which affects brain function.

NWA6• in reply to5 years ago

I don’t think it’s presumptuous at all to think there is a link to low thyroid function and mental health. At one time it was alluded by my GP and friends that I may have bipolar. It was only when I started my own googling that I soon realised that Levo was never going to be enough for me. For many years my T3 has been 0% through range but it was ‘in range’ 3.5 (3.5-6.5) so my GPs were t interested. I’m now on a combo T3/4.

I guess I’m just throwing questions out there to see if we can come up with answers. But like I said about DIO2 test. Not many will take it seriously. When I had my results most Professionals just looked blankly at me but it gave me reassurance.

Also I don’t think you should look into T3 yet as your T4 isn’t even optimal. It’s only 50% through range. That’s why I suggested Levo first. You can’t really know if you have a conversion problem till you have a history of tests. All your Vits and minerals are optimal and then Levo first to give you a boost and then T3 if that fails.

But like you say you need to do more research first. I think that’s best when you have to factor in other medicines or health needs. Good luck 🤗

• in reply toNWA65 years ago

Thank you NWA6... my journey begins

5 years ago

Judging by what you are saying then, shaws, there is no reason to believe that even it were found that I were to have DIO2 SNiP, that it is unlikely I would get anyone in the medical profession to take a blind bit of notice then

DippyDame• in reply to5 years ago

Some people have had the result recognised and had T3 prescribed as a result.

I think you need to shift your focus from Dio2 to T3.

It took me 2 years and much research and advice from this forum before I worked out that I have low T3 due to RTH.

It's a difficult one... and when conventional LT4 treatment failed to help me and I became ill I decided to take control, used what I had learned and self medicated.

I saw an endo only briefly...he was clueless!

I now take one single dose of T3 (125mcg) at bedtime and most of my symptoms have been alleviated....without some form of RTH (much research still required) this dose would seriously over medicate.

Conclusion....RTH

I'm clearly not a medic just another patient who has had to wade through the treacle that is conventional thyroid care.

You can use the search box, RH top of page, to access historical posts......they contain loads of info.

I hope I haven't confused or concerned you but, instead, given you another route to explore.

Sadly there is no quick fix but determination with patience is the key....

By the way I'm 74 so never too late to effect change!

Take care

• in reply toDippyDame5 years ago

I'm coming on 55, it's only taken 38 years from my first bout of depression until 3 months ago to get my diagnosis, and then my cousin throws this into the mix! She's on a T3/T4 mix, having been prescribed T4 initially and then T3 but never achieved any benefits until she was placed on the mixture

DippyDame• in reply to5 years ago

It seems you have the answer then....you need to trial thyroid hormones.

It took me nearly 50 years to get to the bottom of my problem!