I have recently tested positive for DI02 through regenerous labs.
It's becoming more obvious I am a very poor convertor of levothyroxine. Is it worth testing for more genetic traits that could further affect my conversion and possibly give me a clearer picture of my thyroid & hashimoto's. Blue Horizon offer a test that inc;
1)Your Pituitary Gland's receptivity to TRH which stimulates the secretion of TSH
2)Your Thyroid Gland's receptivity to TSH
3)Your Thyroid Gland's receptivity to TSH signalling
4)Conversion of T4 to T3
5)The clearing of RT3 from circulation
6)Your Body's response to stress
7)Detoxification of compounds that impact thyroid hormone levels
8)Your Body's response and susceptibility to inflammation and infection, both of which affect thyroid function.
Or, is it £130 wasted.
Many thanks as always,
Joe
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joey82
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If I’m honest, I wouldn’t bother with any of that. If I’ve followed previous posts correctly, you’re already on T3 and levothyroxine, so you’ll get very little useful information from those additional tests.
I guess it’s good that you now know for certain that you need T3 in addition to levothyroxine but in your shoes, I’d be working to establish my optimal dosage and address any nutritional deficiencies (the usual suspects like Vit D, Vit B12, folate, ferritin etc).
What were you hoping to achieve from further genetic testing?
I did the Blue Horizon genetic thyroid profile. If you are curious about the way you work it can be interesting but the results won’t change your treatment if you already know of a DIO2 SNP and are medicating combo T4 & T3.
If you are thinking results may indicate a T3-only approach, research isn’t up to this yet. It’s more a case of just trying it after all other avenues have been explored over a reasonable length of time.
I'm sorry for the troubles you're having, but glad you got some insight into your genetics.
I'm not sure what else any further testing would glean that a medical professional would regard as meaningful towards your treatment. I identified that I carry a DIO2 polymorphism that contributes to poor conversion. The endocrinologists all just shrugged. "Our standard of care is levothyroxine and T3" But I got an accommodation to use natural desiccated thyroid hormone.
After moving 3,000 miles, I had to establish with a new specialist and he insisted on "proving" that I have a conversion problem. I had been taking NP Thyroid (natural desiccated thyroid from pork) for several years. Hoping to win some support from him, I agreed to go back to levothyroxine and liothyronine (T3). After three weeks, I could barely walk around. I had a blood draw done, to satisfy his requirement. I messaged him, only to learn that he was "on vacation" for several weeks. When he was supposed to have returned, I waited, and finally learned that he had left the practice. Hmpft.
But, I took the immediate act of resuming NP Thyroid after I could tell that I wasn't converting the levothyroxine. The labs came back and my FT4 was up nicely, as was the FT3. But if I couldn't walk around and engage in any normal activities, what good were these nice looking numbers? On NP Thyroid, the numbers are in the gutter, but I have cellular energy for moving my muscles.
You can't always go by the recommended lab results.
You might need to go with a desiccated pork gland product.
One reason the endocrinologist argued for levothyroxine is that, theoretically, the ratio of T3 to T4 in pork gland product is different from the natural ratio that somebody measured in humans somewhere. I don't know where they're getting that. I also know that having labs in the higher range while on levothyroxine didn't do anything good for me physically. I felt like rubbish, which was the problem five years ago, when I struggled to get off levothyroxine and onto NDT.
The trouble is medicine these days likes to streamline everything. Unfortunately we are all different and such approach does not work for all. It's probably based on the average in the population rather than the individual. Lots of people do well on their treatment protocol but not all. This is something that many doctors don't get. They think one size or two fits all. But it doesn't!! The patient is then blamed when they don't fit.
I tested Dio2 polymorphism positive/ homozygous ( from both parents
The only (possible) benefit I found was knowing the origin of the snp.
For me it was also a stepping stone in the process to finding that I have a form of Thyroid Hormone Resistance and need high dose T3-only...which is very rare.
i have to source my own T3.
Research has shown that a homozygous origin has greater impact than heterozygous ( from one parent) and that may help achieve a prescription for T3....if the endo knows their stuff!
Poor conversion can be established in a more general sense by comparing FT4 with FT3 labs.....high FT4 with low FT3 indicates poor conversion
Or you can divide the FT4 result by the FT3 result. Good conversion is said to take place when the ratio is 4:1 or less, over 4:1 suggests poor conversion.
I don't think there is much to be gained by spending £130 on further tests
Instead I would suggest you focus on full thyroid testing (after at least 6 weeks on a steady dose) to include ....
TSH, FT4, FT3, vit D, vit B12, folate, ferritin..... and thyroid antibodies TPO and Tg if not already tested
Nutrients must be optimal for good thyroid function
My key vitamins are well up in the range now. Next test is full thyroid panel + anti bodies for my appointment on 30th June.
My last 2 tests showed poor conversion, and my symptoms nose dived on 12.5mcg daily, reduced back down to 175mcg daily.
I have approximately 70% of my thyroid left with no active inflammation. I'm on 175mcg daily and still don't feel good. Something is not write with Levothyroxine, for me anyway.
I think you may be looking for the magic bullet which doesn't exist. It's not uncommon for people to report improvements 18 months on from finding their optimal dose, getting vitamins right can also take time for symptoms to improve, think quite a few months.
I understand the impatience, I really, really do, but now that you have T3 anyway there really is nothing further to be gained from testing genes.
I'm not looking for a magic bullet, I'm just trying my best everyday to understand and make a step in the right direction.
it doesn't take 18 months on an optimum dose of Levothyroxine to work completely. So what you are saying is, you have to be on one dose of Levo for a year and half to see if it to become fully effective.
This would be a case of if your low thyroid state has effected your adrenals.
I'm not currently taking T3, sorry if my profile is misleading.
What were your results on 175mcgs levo. I've looked at your previous posts and am getting confused as to what dose of what you are taking when. Sorry.
The thing is, you already have access to T3 should you require it. It's good knowing you have the DIO2 gene as that can further direct treatment but other than that there's not much more to know that would help.
Of course you should feel better before 18 months on an optimal dose but some symptoms may take that time to respolve fully. I'm personally 7 months in to adding T3 and adjusting dose and regularly feel ghastly and utterly exhausted. I do feel for you.
I won't post them now as my results are in a folder I don't have access to. Thats a post for another day. My conversion was ok on 175mcg 78% t4 - 68% t3. Didn't feel great.
Tried an increase of 12.5mcg daily, felt awful, poor conversion after testing at 6 weeks. Reduced back down to 175.
Yes, I tried t3 back in March. 10mcg a day plus 175. It made me feel absolutely terrible, awful. So came off t3 after 3 weeks. Didn't test. Should of done, probably took to much. Didn't dose throughout the day or reduce t4.
If you can convert like that then at the moment there's little wrong with your conversion although that may change over time. Someone who really needs to add T3 would have an FT3 of 0-50% when their FT4 was 80-90%.
When I started adding T3 I felt a slight improvement of various things although others were awful. When I added the final 5mcgs it didn't make me feel great at all, if anything some things were worse but it feel as if my body was working differently. I'm very long term hypo and under replaced mind you. The last 5mcgs T3 was like hitting a seam of hyponess within me. Tissues that hadn't seen a decent dose of T3 in decades were finally being reawakened. I'm just sticking with it for now.
So what's the answer then? I've just tried adding 12.5mcg daily to take my T3 into the very top if the range, which it did at week 6, tested and my t3 was 100% of the range. But my conversion was worse and I did not feel very good at all.
Perhaps I should of tried it for longer than 7 weeks, but from my own experience I really couldn't see my symptoms improving.
Less than a week after going back to 175 I feel a bit better already.
This whole post is around DI02 and it's impairment on conversion of t4/levo. It's renowned to reduce conversion and not to be reflected in serem levels. I've been right from 50 mcg daily to 175 on levo and never felt good on levothyroxine.
I dont mind what hormone replacement I have to take but it's got to work for me.
Good conversion in my eyes would be parity between t3 & t4 levels. My last test on 187.5 was over 20% difference between t3 & t4.
There doesn't need to be parity. FT4 can be higher so long as FT3 is 60-70% of range + optimal vitamins.
There can be quite some change in blood numbers once the dose has 'settled' at 8-10 weeks even and leaving shorter timings can be unproductive.
7 weeks is no time at all to make a judgement on a dose, especially when blood numbers look good. Better to stick it out for 3-4 months and I think at that point your vitamins werent optimal either.
We are all different and need to find the right hormones or combination that suit us but this cannot be hurried.
I really wanted to stick at the higher dose for longer than 7 weeks, but I felt very unwell. It was hard to stick at it. I knew I was better off on 175.
I know the transition period following a dosage change can be quite rough, but I've never known it to take that long, or feel that rough.
You should start to feel better after 7 weeks not worse.
I then got the Di02 result, plus poor conversion (in my eyes any way) and listening to the guest speakers on the TUK webinar last week made my mind up.
Yes I can understand trying to wake your body and cells after decades of under treatment is a difficult and lengthy task. I'm fortunate that I've only been dealing with this for 4 years, the last year has been especially difficult.
If you were looking for DIO2, you would search for ‘rs225014’ then look at the results there.
"TT’ would mean you had no defect inherited from either parent.
‘TC’ or ‘CT’ would mean one parent gave you the defect and one did not (you are heterozygous for the defect).
‘CC’ would mean that you have both defective genes (you are homozygous
But.... some labs may use different letters but the principle is the same
My last 2 tests showed poor conversion, and my symptoms nose dived on 12.5mcg daily, reduced back down to 175mcg daily.
Was this a typo and you meant a reduced dose of125mcg daily?
If so the extra T3 produced from conversion of 175mcg very likely was enough to partly relieve your symptoms..... which then reappeared as your T3 level fell on 125mcg
Common Variation in the DIO2 Gene Predicts Baseline Psychological Well-Being and Response to Combination Thyroxine Plus Triiodothyronine Therapy in Hypothyroid Patients
Unfortunately medics are ofter poorly informed re thyroid disease!
When you get your next results post them then we can see what is going on
Sorry, was on 187.5 daily for 7 weeks, poor conversion and increase in symptoms. Dropped back to 175 mcg daily on which is undoubtedly better off, but still not great.
I don't have an issue with my endo prescribing and I get it free on NHS. But, I think my dosing has been all wrong due to poor advice. It did work well for 3 months... another long story.
We are still at the foundations of genetic analysis.
You mention eight possibilities.
But we have more than 20,000 genes.
It is very likely that further variations will be identified which have important effects with respect to thyroid.
I suggest that it is likely not worth doing single gene tests, or small groups of genes, unless you are seeking an answer to a precise single question. Which you got from Regenerus.
You could do 23andme or Ancestry (and other) tests which do many more genes/SNPs. But this will largely be out of general interest. They might not do the precise ones you want!
Or do a whole genome sequence. And get everything. (But make sure you understand what you are getting before making any decisions. It isn't just the testing but the retention of data, analysis options, etc.)
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