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.
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.
DIO2 test
DIO1 and DIO2 Gene Defect Testing
Testing for DIO1 and DIO2 gene defects
DIO2 (Deiodinase 2 Gene) test
