Morning All
Does anyone know of any labs/companies that test for the DIO2 gene other than Blue Horizon? They don’t actually say they test for it. This is from their description :
‘Conversion of T4 to T3, The clearing of RT3 from circulation’.
I might be too picky with the interpretation, however they state ‘the clearing of RT3’ , but it isn’t a test for rt3 as they advertise that separately.
Thanks.
Why bother testing for rT3!
An rT3 test tells you nothing other than it's high or low but there are many reasons for that ...but only one is related to thyroid function
rT3 is the product of excess unconverted T4, it is the metabolically inactive form of T3.
You don't need an expensive and lengthy rT3 test to judge T4 to T3 conversion status you can do that by comparing FT4 with FT3....high FT4 with low FT3 indicates poor FT4 to FT3 conversion
I did the BH test a number of years ago and found their presentation a tad confusing....but after I did a bit of research (because I knew very little about this issue), I did discover that I have the Dio2 polymorphism/ homozygous.
In truth that told me the inheritance, but little more than comparing the two Frees.
This details the Regenerous genetic test...
thyroiduk.org/testing/priva...
Thanks Dippydame.
I thought Regenerus had stopped the DIO2, but the link suggests otherwise. At least they have a phone number, which BH don’t offer.
I mentioned the rt3 as I felt it wasn’t clear exactly what is being tested.
I think the DIO2 might be helpful as I seem to persist in a fairly high T3T4 ratio.
Are you sure it's not poor conversion which results in low FT3.....prob means adding a little T3
Your previous posts indicate low FT3
For good health T3 must flood all the cells in the body by way of a constant and regular supply....it looks as if this isn't happening.
What medication are you currently taking....and how much?
rT3 is a red herring!
Just typed a long reply and it’s gone, so apologies if 2 replies pop up!
Yes I suspect poor conversion. Very interested in establishing a genetic link (or not).
I haven’t seen an endo for 25 years, I have the list and narrowed it down a bit. The one I would really like is nhs only though.
Currently 100 Levo
Last test in April:
TSH 0.25 (0.27-4.5)
T4 20 (11-23)
T3 4 (3.1-6.8)
surprised I didn’t get another reduction in Levo, but I suspect my gp doesn’t read them.
Thanks Dippydame, good of you to look at previous results. ☺️
Yes....I've fallen foul of the post munching gremlin too. Infuriating!
Not to worry, you offered enough
Your conversion is dreadful!
FT4 is 75% through ref range
FT3 is 24.32% ditto
We aim to have both Frees approaching 75% through their respective ranges
FT3 is abysmally low
Any medic worth their socks should see this
It is vital that you optimise vit D, vit B12, folate and ferritin to support thyroid function
Your GP should be able to sort this out, at least initially....see below
Problem is so many of them are clueless....just look at posts on here
First you need to increase levo to 150mcg
Test after 6/8 weeks
Review dose based on FT4 and FT3 labs....NOT TSH which research proves is an unreliable marker after diagnosis
(I doubt it, but you may need/ have room to increase to 150mcg so long as that doesn't push FT4 over range which potentially increases risk of cancer and dementia.....don't panic, with monitoring levels you won't reach there!)
If that fails to raise FT3 to a therapeutic level then you need to think about adding some T3....you may not need to.
Very interested in establishing a genetic link (or not).
Do you have a family history of thyroid disease?
Suggest you speak to your GP and discuss a levo increase.... pointing out the low FT3
I take it GPs have been monitoring your dose over these last 25 years
Good luck
Trouble is- I’ve only recently managed to get T3 results (again courtesy of this group). I’ve been on higher Levo, but it just knocks back tsh, then it’s reduced again. Last time I was on 150 tsh was 0.01 and t4 26 (11-23). No T3. This yo-yo madness has gone on for years.
no knowledge of family thyroid, however we all have a number of autoimmune conditions, which seem to have the ability to self multiply.
Am on a mission now to find an endo and would rather I didn’t fly solo on sourcing T3 if possible.
As for them monitoring , hmm, jury’s out! To be fair, if I go in, they don’t listen to symptoms and focus on tsh, so not helpful anyway.
Thanks DD
OK....you need T3.
I'm on high dose T3-only but I self source and self medicate....so no NHS safety net
Thyroid diagnosis and treatment is beyond appalling....it's not rocket science but they just don't understand because they stick with what are established beliefs rather than verifiable scientific facts....and they are messing with patient's well being and in extremis their life.
I told one medic that if she had no idea what was wrong with me I'd do the research and find the answer myself....and I did. I was so desperate and ill that I knew I had to take charge or die...it wasn't easy through thick brain fog.
Now, I can hardly believe I had the courage!!
So yes, I totally understand, they forget the patient is the expert witness to their ill health and that the first stage of diagnosis is listening to their patient.
Until they first look at FT3 and FT4 this madness will contunue....when I was first diagnosed FT3 was routinely tested
Keep pushing....you're stronger than you think!
Sorry...I'm ranting again!
I love this paragraph DD!they forget the patient is the expert witness to their ill health and that the first stage of diagnosis is listening to their patient.
Thanks, I do keep finding rabbit holes. Rant away- we’re all entitled!
I’ve heard some appalling stories on the way. Many along the lines of ‘non compliance’, and have experienced that myself , which I consider to be offensive and unhelpful. Actually, GPs need to be compliant themselves, enough to listen to the symptoms before interrupting and typing out an adjustment to Levo. I think hypothyroidism must be the only disease where there is one narrow line of treatment, regardless of symptoms and outcomes.
Hi I'm in a similar position to you. Private thyroid blood tests are showing low conversion. GP only interested in TSH. Endos are pretty expensive and you don't always get what you want. So I booked an appointment with (Roseway labs £55 consultation) and asked to start a trial of T3. Just waiting for it to arrive. I'm also interested in getting the DIO2 test.
Regenerus don’t run just Dio2 test anymore
They do appear to include testing Dio1 and Dio2 in this gene test
regeneruslabs.com/products/...
portal-app.inspira-regeneru...
Suggest you investigate further and check if that’s correct
Thanks SD, i thought I’d heard that. I will phone on Monday and if they do I’ll go with them.
I had my DIO2 gene test through Regenerous Laboratories. It cost about £165 for the test, report and person to call to interpret the report. Mine came back positive that I have this faulty gene. It was a light bulb moment for myself. I finally knew why I wasn’t converting t4 to t3 hardly, only 8% conversion. I took the report to my gp who promptly scanned it and added it to my NHS file. I’m now on T4 and T3 combined treatment. The added t3 has made a positively huge difference to my life. I’d never have known any of this without this fabulous forum and the most helpful people on here, administrators and members. That test completed my understanding of my issues.
I didn’t even know T4 converts to T3 until I started reading this lovely forum. In fact, I never even saw any results - now I’m signed up.
That % seems very low, how do you get that, is it from the ratio? I’ve done the Chingkerrs grid and my ratio averages at 4.84, although I’ve not been getting T3 results for long.
If I show the gene then it’s all grist to the mill isn’t it.
I’m going to call Regenerus on Monday, as both DippyDame and SlowDragon have found a link indicating they might still be testing. ☺️
I never knew anything about conversion either T4 to T3. My GP never tested T3 in over 10 years. It was when I collapsed and taken to hospital when I was first tested for T3 levels. I still had no clue what it meant when it was so low 3.9 (3.7-6.0). T4 was too high at that point. I was only converting 8%. There’s a calculation you can do. Ask Slowdragon and she will send you the link. You just put your results into it. It was only joining this forum I got educated. Prior a trusted my GP and any Dr really. I learnt they knew very little about the thyroid, especially NHS Drs. I went private only to get my diagnosis and rapid help and being disregarded by the NHS for far too long. It was all about the cost of T3 and CCG’s not allowing Drs to prescribe it within the NHS and that story rumbles on today even. I did get T3 off the NHS but only by intervention from my brilliant and respected private only endocrinologist.
It’s worth a call to Regenerous or just check on line. I did it all on line. Some NHS Drs won’t comment on gene results and that’s because they’ve had no training in it or experience. Not that the gene results are right and matter significantly but they don’t understand it and therefore push it away.
healthunlocked.com/thyroidu... is link to recentish post.
I read Paul Robinson link and I am trying Ancestry DNA test route where they give you a large text file to search/I think it is full profile of DNA rather than just 12 or so markers. It takes more than 6 weeks so no results yet ... another few weeks. It was lower cost.
Mcpammys experience with Regenerous looks good though.(Directly above)
I looked at Ancestry but wasn’t sure they gave the DIO2 result. I messaged them and they just replied that they don’t show anything medical. But yes, tempting as they’re much cheaper. I even considered signing up for the Our Future Health thing.
healthunlocked.com/thyroidu...
Hi, I’m very new to all of this so others will have more knowledge but just wanted to say that I had my DNA tested on Ancestry a year ago just for fun. Then, this year, when I wanted to find out if I had the DI01 and DI02 markers I was able to request my raw data from Ancestry and search in the file they sent me. I found out about it from Paul Robinson’s book and the link above. Hope that helps.
Blue Horizon will have a live chat when they are open on Monday for question.
I think the problem is they try not to bamboozle people with science by saying what genes they test, they just try to describe what the genes do. But as you have spotted this can be counterproductive if, for example, DIO1/2 is what you are interested in.
As long as the test you are looking at is one that has DNABlue in the title you are testing the genes that influence ( eg genes affecting RT3 clearance that you mentioned) rather than hormone levels in the blood.
I think it is a useful test to understand your thyroid issues better.
Last month I sent off my swab for the DNAblue Thyroid Genetic Test £145. Here is their list of gene and SNP inclusions:
DIO1 - Thyroid Hormone Activation “D1” is largely expressed in the liver and kidneys. It is responsible for the clearance of rT3 from circulation, and for facilitating the conversion of T4 to T3 in plasma and surrounding tissue. This process requires selenium and iodine for optimum function. Here we look at two variants linked to poor conversion of T4 to T3 and reduced clearance of RT3.
DIO2 - Thyroid Hormone Activation “D2” is importantly expressed in the central nervous system, pituitary, brown fat tissue and muscle, and responds to changes in thyroid levels. D2 is responsible for the ‘local’ conversion of T4 to T3 in the thyroid, placenta and brain. It requires selenium and iodine to function optimally. Here we look at two different variants linked to decreased T4 and low mood in certain individuals.
COMT - Inactivation of Stress Hormones and Oestrogen COMT is one of the main inactivating enzymes of stress hormones and oestrogen in the body. COMT variants cause slow clearance of stress hormones and oestrogen leading to high oestrogen and stress hormone levels which may also be linked to thyroid hormone dysfunction.
FKBP5 - Cortisol Regulation FKBP5 is an important stress-regulating gene responsible for lowering cortisol levels after a stress response. Variants are associated with prolonged and increased symptoms of stress, which may be due to delayed lowering of cortisol levels.
PDE8B - TSH Signalling PDE8B is found in the thyroid but not the pituitary, and is involved in TSH signalling. It is thought that the variant decreases the response of the thyroid gland to TSH stimulation
TNF-a - Inflammation TNF-a is an inflammatory cytokine that helps regulate the immune reaction involved in inflammation, giving rise to fever and inhibiting tumour growth. If poorly controlled, it may be implicated in a number of autoimmune disorders. Variants in TNFa are associated with overreactive immune responses and prolonged inflammation.
TSHR - Thyroid Stimulating Hormone (TSH) Receptor The TSHR gene plays a central role in thyroid metabolism by controlling the thyroid gland’s receptivity to TSH. Variants in this gene have been linked to hyperthyroidism, particularly to Graves’ Disease (GD).
TRHR - Thyrotropin Releasing Hormone (TRH) Receptor Responsible for the body’s receptivity to TRH which stimulates the secretion of TSH from the pituitary gland. In turn, TSH stimulates the production of thyroid hormones from the thyroid gland. TRH is an important part of the negative feedback loop that ultimately regulates thyroid hormone levels. Variants have been shown to affect TSH levels.
DIO1 and DIO2 Gene Defect Testing
Dio2 gene testing
Genetic testing 
A ramble concerning Reverse T3 ratio/ DIO2 polymorphism and dosing. 
DIO2 testing
