Hi,
I have finally had my DIO2 test results and I am positive Homozygus AA which means I have no chance of converting T4 to T3 anywhere in my body and I am insulin resistant and this gene causes obesity.
Can anyone please tell me how to deal with this now as far as diet lifestyle etc etc?
Feeling a little overwhelmed
Hi so sorry u r going through this . Can I ask are u on liothyronine already . So u r getting straight t3 .
U probably are and know this already .
Diet wise .Have u heard of leaky gut .and about the fact that all auto immune diseases are connected . And need same treatment .namely giving up trigger foods .so will help 're diabetes , hypothyroid if auto immune type or hashimotos.
I follow Isabella wentz book .the hashimotos protocol .as she spells it out what to do .basically starting with no sugar ,alcohol,dairy, gluten etc.
But if that sounds too much to take on at the moment .as u have had enuf to contend with.
Try just no gluten and no sugar .or no dairy and no sugar .
As one of these can make dramatic changes for lots of people anyway.
I had dramatic changes with no dairy. Yet gluten free I had hardly any changes
I hope this isn't all old hat to you .
Please ask more if u want more info
Hoping u find yr answers soon .u will if u keep searching . Don't give up .this site is a godsend as u know probably
I am on T3 and glandulars which have an enormous impact on my health as T4 and T3 alone don't help.
I have Hashi and my antibodies have come down quite a lot from 3000+ to 399 at the last test.
I try to have a sugar free diet, gluten free is more difficult as I honestly think the stuff tastes awful. Diary I don't have a lot of anyway.
I am driving my treatment as I got really tired and annoyed at being ignored.
I am just getting over a very bad period of infection and tummy bleeds.
I just sometimes feel like I am lost with everything as I don't feel I can trust my health to the medical profession.
I am getting there but still not perfect and I can feel amazing one day and be so exhausted the next, I am frustrated and sometimes quite fearful of the future.
Try to avoid the gluten free processed products many of which taste diré I agree. I just avoid anything with wheat. But you can eat a lot of very healthy produce that is gluten/wheat free - fruit and veggies for starters are so good for you. If you try and get away from the idea of bread as a staple it becomes much easier plus I look at al they healthy hings I can no longer eat and think thank goodness I am not putting that into my body! Tho occasionally I still wish I could scoff the odd gluten laden treat!! I never do. I feel better for it.
Are you under an endo? If so present this and ask for T3
What do you currently take?
What about vitamin levels and supplements.
Are you strictly gluten free
Suggest you email Louise at Thyroid Uk for list of recommended thyroid specialists
Louise.roberts@thyroiduk.org.uk
Hi there,
No I have never been referred to and Endo.
I am currently on 20mcg Liothyronine and 50 meg Thyroxine along with Adrenavive and Metavive.
No I am not gluten free as I think the gluten free foods are awful.
I am currently on vitamin D, vitamin C, coQ10. I was on folic acid as that was low but my doctor has stopped that, B12 levels are good.
There are lots of foods that are naturally gluten free.
Yes many breads are awful, but they are getting better.
It may be essential to be gluten free to feel better. Certainly many here find that.
Have u tried the brand genius for your bread .the multi seeded one .my partner hates all the others .and is a big bread lover . And yes I can tell that it tastes more like bread than others by miles .and the genius buns I actually had in a cafe first and thought they were cheating me till checked the labelling they showed me . I also have toasted sandwiches and then Deffo all taste the same as non gf bread .
Tesco own fusilli pasta also good .
Just try for a month or so .if u don't feel healthier .go back to gluten .my partner felt so much better he is not going back to gluten .it's a weighing up game .
My big love is dairy .but almond milk and coconut milk have been lovely .and there is a coconut based cheese in Tesco I like .
I never believed I could give up dairy .but coz it has improved my life so much then it's a no brainer for me to keep it up .
You got to do what suits u . U will be fine. Because u r a searcher for answers . There are loads more options for you to explore .the medical profeßions answers are very limited .the internet answers are infinite . Leaky gut treatment is the future of western medicine .medical knowledge as u know is forever evolving .and the internet is always ahead .
Good luck .xx
A positive DI02 blood tests indicates you cannot convert T4 at all. Therefore you have to be on T3 alone. I shall give you a link. You can take the following to the Endo or doctor.
thyroiduk.org.uk/tuk/testin...
I think that many Endos or doctors are completely unaware of this defect in some people in that T4 (levo) is useless in this case as the patient cannot convert T4 to T3.
T4 is an inactive hormone and it's job is to convert to T3. T3 is the only active thyroid hormone and is required in our T3 receptor cells (billions I believe).
thyroiduk.org.uk/tuk/testin...
@Shaws
I wonder how anyone with this disorder stays alive on T4 alone I presume it slowly kills them. It sounds very scary esp as it is not common knowledge in the field of endocrinology.
I am not sure but I think some might develop other conditions and get prescriptions for them as the Endocrinology don't seem to be knowledgeable about how different human beings are, i.e. some can take a paracetamol and feel fine and others don't. I believe we hypo patients should be permitted a 'choice' if not improving on levo. All they take notice of is the TSH alone and ignore patients' pleas that they have disabling symptoms. They also don't give patients optimum meds and seem to keep many somewhere in the range instead of 1 or lower.
Thank you for this information I will definitely chat to my doctor
What DIO2 test is this? The original research ncbi.nlm.nih.gov/pubmed/191... found impaired psychological wellbeing in patients with the CC genotype of the rs225014 polymorphism in the DIO2 gene (vs TT genotype). You are referring to an AA genotype, which polymorphism does this relate to? It would be very helpful to know the full details of this genetic test, even if you just quote the jargon in the sale pitch or give a link. It doesn't seem to have any relation to the well known polymorphism which affects response to levothyroxine treatment.
You absolutely do convert T4 to T3 (you would be dead by now if you didn't). Firstly, your DIO1 gene is unaffected, your type-1 deiodinase function is normal, although this alone would not make you well. Secondly, the rs225014 polymorphism just leads to slightly reduced DIO2 capability, these subjects still have type-2 deiodinase capability it just isn't quite as good as the rest of the population. Patients with the CC genotype appear to be perfectly normal until their thyroid packs in, they then have impaired psychological wellbeing if they are not given a little liothyronine with their levothyroxine.
Just to make it absolutely clear, everybody converts T4 to T3, thyroid hormone receptors require T3, without which we cannot survive. Certain polymorphisms lead to minor impairment of T4 to T3 conversion. Genetics is a very complex subject, you need to know what polymorphism is being tested. It seems you did not have the test that checks for the common polymorphism that affects type-2 deiodinase. You should not have been offered a genetic test without counselling and without an expert explanation of what the results mean.
This variant, according to the report is that I am Homozygus variant AA which means that I have a decreased ability to produce T3 and that this variation is linked to insulin resistance and obesity. After chatting to the councillor provided by the laboratory, it was explained that I have strands from both my parents which makes it impossible for me to convert T4 to T3. Thankfully I am already on medication T4/T3 and glandulars so no I won't die even though I almost did before taking matters into my own hands and trying to find an alternate to T4 mono therapy.
You're right - it doesn't connect to the reported polymorphisms. I posted more info in a reply to Harle a little further down.
Oh and just to be clear... I used the Thyroid Uk recommended test and lab for the DIO2 gene test so if this is incorrect then perhaps the site should be update...
My results are on DIO2 (T92A) RS225014
Hmmm from livewello.com/snp/rs225014
"Data for DIO2 rs225014 obtained from dbSNP shows alternate versions of alleles for this SNP on the FWD (plus) strand), are C/T.
45% of people have the variant allele C and 54% have the wild type (typical) allele T."
So no idea where the 'AA' result is coming from. Unless it's from this SNP - DIO1 rs2235544. That one has A as a variant. Or DIO2 rs17110449. But the SNP numbers are completely different so that's a large mistake, if so.
Also even if you have a deleterious DIO2 gene it doesn't mean you cannot convert ANY T4 to T3. Your capacity is reduced by a lot, but not entirely.
Thank you for your comments, I will take the advice of the Councillor and give the results to my GP. I now know that I need T3 to survive. While this test confirms my suspicions and I had already made vast improvements on the combined therapy I take, I will adjust my diet and lifestyle to improve further. I am no genetic expert and can only go on what was reported and how I feel health wise.
For anyone else who might be following the Thyroid UK path, do you know if the Genetics Counsellor is a geneticist or a nutritionist with an interest in genomics, please? Harle
I will need quite some time to look at this, genetics is complicated. DNA consists of 'base pairs' A pairs with T and C pairs with G, see the beginning of geneed.nlm.nih.gov/topic_su... for a brief description. I haven't read the rest of this link so cannot vouch that it is good, I assume it is.
The original study that found some patients with impaired response to levothyroxine linked it to the rs225014 polymorphism which has a C G base pair. So the fact that you have an AA base pair confirms you have carried out a different genetic test. You may have a reduced ability to convert T4 to T3 but the statement that you cannot convert T4 to T3 is absolutely incorrect, maybe you misheard what was said? Remember you were born with these genes and were OK until you developed hypothyroidism and your thyroid packed in. The thyroid produces a small amount of T3, it is thought to produce about 6 mcg T3 although this may be an underestimation. So, you have been happily converting T4 to T3 all of your life.
It may be that you have a gene that reduces your DIO2 capability (and predisposes to insulin resistance) but this effect would be fully compensated once you take sufficient T3 to replace the T3 your thyroid used to release, about 10 mcg. I don't doubt you need some T3 medication to get well but I suspect it has little to do with your genetic makeup, there can be many other reasons.
If I get time I will take a look at this as it seems ThyroidUK might have been running the wrong genetic testing, at least in the sense that it is not the one picked up by the Panicker study linking a DIO2 polymorphism to impaired levothyroxine response.
Thank but please don't bother yourself I was asking for dietary advice and have received that. Thanks anyway
It looks like it would be important to confirm if it's the correct genetic testing so that would be very helpful, if you can jimh111 . (Likewise if ThyroidUK's counsellor is a geneticist or a nutritionist with an interest in nutrigenomics.)
ETA: Just had a look at the Regenerus site mentioned below and read this about the necessity for genetic counselling to obtain the result: "[Regenerus Labs] are able to allocate an independent practitioner to you who will be an experienced Nutritional Therapist suitable to translate the information and give you general guidance".
I have had the correct genetic testing as per Thyroid UK. My counsellor was appointed by regenerus labs. I am very comfortable with what I have been told and only needed some dietary advice which I have received. Thank you
I am interested in this. I paid for the DIO2 test after starting T3, as the difference was so profound. I went from barely walking 5-10mins in agony, to considerable improvement managing almost an hour just a week after starting T3.
I only have single heterozygous DIO2 gene variation.
Obviously you can exist/convert T4 to some extent as I have managed (with immense difficulty) to limp along on just on T4 for 22 years.
I don't think the counsellor was genetic specialist but a functional nutritionist.
My T3 was doubled from 10mcg to 20mcg daily by my endo. Not sure if that specifically due to DIO2 gene or if it would have increased anyway.
I will look into this genetic test, it will take up to a week as I have lots of things on the go. I will e-mail Lyn Mynott when I have some info. as it looks like the recommended gene test is the wrong one. I won't put any more info. here as the original question was about diet.
Harle, sorry about drifting off your topic. There are many reasons some of us need T3 medication, often more T3 than we used to have when our thyroid was healthy. It's a matter of taking the correct amount, trying to resolve symptoms but at the same time keeping an eye out for signs of overtreatment - such as a slight hand tremor when you hold your hands out, developing a little vertigo, a tendency to sweat, increased pulse etc.
As regards diet, I've never dieted so I'm not much use. I've observed that most patients lose some weight when their hypothyrodism is treated but they don't get back to their pre-hypothyroid weight. I would caution against (very) low calorie diets as the body responds to insufficient calories by reducing T4 to T3 conversion. I would suggest moderate calorie restriction and regular exercise. I saw a TV program which demonstrated that frequent moderate exercise was better than less frequent strenous exercise. The hypothesis is that when you raise your pulse it remains elevated (and so burning calories) for a while, so the idea is to keep your metabolism ticking over with lots of exercise periods.
Hi. I would appreciate more info about this too. I have the homozygous AA result and was confused because it wasn't the one in the research I'd downloaded. Please will you keep me in the loop with whatever you find out?
I didn't have the genetic counselling because the result was sent to my private doctor and his secretary forwarded it to me.
Hi Harle
Me too, I have the DI02 issue too. T4 can work, does for me, but don't want to give out general advice but will PM you.
PaulB
Interesting thread as I have just been through this process myself, I have 2 genetic SNPs on the DIO1 gene which is also associated with t4/t3 conversion.
I'm not an expert but am doing a nutrition degree and we have covered basic genetics so I can share what I've learned. Genetic SNPS need to be switched on/expressed before symptoms are experienced (epigenetics) so you could have the DIO gene and not have any Symptoms until its expression is triggered. Same way that you can have breast cancer gene or Alzheimer's gene but it direct necessarily mean you will get that disease.
I was on t4 for 10 yrs with seemingly no issues, but during last year it seems to have become toxic to me causing headaches, jaw tremor/pain etc. I came off t4 for a couple of months which reduced symptoms and was lucky enough to get t3 from the Endo, after 4 weeks all symptoms are gone and I feel human again.
There are 4 base types C A T G and my understanding is that you can have any combination of these but often a combination doesn't appear in the results online, I think this is because that combination hasn't been studied enough to have any research to quote. I have found this myself in some my my results. There also is very little on DIO1
I think there also needs to be caution when using the free/cheap online tools, in one report I had VDR TSM SNP as red (VIT d receptor) but as green in another report which I will raise with the provider.
It would be good if ThyroidUK could update there page as I note it's dated 2013. It also doesn't cover the DIO1 gene, or what other SNPs need to be considered e.g. What if you have a conversion SNP and a VDR SNP as vit d is crucial fir thyroid health. This is where a professional counsellor is necessary as genes and SNP don't work in isolation
Interesting. I don't know if jimh111 has had an opportunity to look at the test and posted an update that I missed.
Don't have any time to follow it up at the moment. I sent the e-mail below to Regeneruslabs on 24/9 and have not had a reply, which I regard with suspicion.
I have a question regarding your DIO2 genetic test. The study detailed in your documentation healthunlocked.com/api/redi... addresses the rs225014 polymorphism and compares patients with cytosine (C) and thymine (T) genotype. It finds that patients with the CC genotype have impaired well-being.
I have noticed that fellow patients who have carried out the test have received the response that they are 'homozygous AA'. Can you explain this please? It looks like the test is referring to adenine (A) rather than the cytosine (C). Does you test address the rs225014 polymorphism or something else?
Thank you for the update tho' it's somewhat disquieting. jimh111
DIO2 testing
DIO2 (Deiodinase 2 Gene) test
DIO2 Testing - Word of Caution 23andMe
Anybody know about the test DIO2
