Just in case anyone is planning on getting testing via 23andMe to check your DIO2 genes, I've just got my report through last weekend, having ordered it in the NY (Christmas pressie) However, they do not seem to be genotyping the DIO2 rs225014 gene on the current platform. (And possibly others) I've asked why and await their response. Frustrating to say the least!
If anyone knows any more about this I'd be interested t know.
I think this Is the gene linked with hypothyroidism? I don’t know much about it but came across this paper recently which suggests if you do have the gene T4 and T4 combination therapy is better which I I thought was interesting. Are there other companies testing for this gene and others that can inform us better about what treatments would suit us more?
Did you mean to say T3 and T4 combination therapy. And is that one or both of NDT or synthetic
T3 and T4 combination is synthetic
Why do you say that? Isn't desiccated thyroid a form of T4 and T3 combination therapy?
I thought that NDT was t4, t3, t2 and t1 with calcitonin was natural and all the rest were synthetic. If not, my apologies. Jo xx
Who knows how much, if any, T2, T1 and calcitonin are present in any make of desiccated thyroid? Indeed, in any single tablet!
The manufacturers make absolutely no claim about the presence of these three substances (although RLC do say there is, or is likely to be, some T2 and T1). And we know next to nothing about the ability to deliver them via a tablet even if they were present. Also, the calcitonin present will be porcine which is different - the significance of the difference is totally unclear to me.
The fundamental point is that desiccated thyroid delivers T4 and T3. Synthetic levothyroxine and liothyronine deliver T4 and T3 (whether as separate tablets or combined as in Dithyron). Both are forms of combination therapy. Yes, there are differences and some may do better on one than the other.
It is. It can indicate the ability/ impairment to convert T4 to T3. People were getting this testing to be able to show GP's that there was a reason they needed T3. Seems too much like convenient timing to stop checking it.
I had test done with 23andMe but it didn’t tell me anything about my thyroid function. I got a kit from Regenerus labs to test whether I had a DIO2 gene conversion problem. Results showed I have a heterozygous gene, meaning one of my parents passed on a faulty gene to me resulting in a reduced ability to convert T4 to T3. Being able to show my doc this was instrumental in getting Liothyronine prescribed.
That’s a bloody great idea, LuckyLady!
Was going to get a 23andMe done for my husband for his birthday after my brother had his done and learned loads.
Unfortunately for me, DNA can hugely vary between siblings, so my brother’s reading wasn’t enough to avoid paying out for my own.
Which I will still swerve now I’ve seen Regenerous might work better in the way you mention, Fortunata mia!
It depends on what you want it for. The Regenerus I think will be just the DIO2 testing. 23andMe will give you Ancestry stuff. It did also give me info on the MTHRF gene. The point I hope I was making is be sure of what you are ordering, and that it is giving you what you want. If in doubt check.
It is a lot of money to spend if it is not what you want.
Yup, you’re quite right. 23andme showed that my brother had the MTHRF gene, but he hasn’t got any thyroid problems that we know of (though our Mum does: she’s hypEr unlike my hypO) so I’m not sure quite what that means if he has no issues at all!
Is Regenerous better than this one, I wonder?
bluehorizonmedicals.co.uk/t...
I was just thinking of doing the DIO2 for the reasons Fortunata said: to backup my T3 argument so I don’t have to self-prescribe anymore...
My mother I would swear was HypEr, though had TC,two sisters and an aunt known to have/been HypEr.
I think you need to really look into the differences between Regenerus and Blue Horizon to make your own mind up as to which is better for you.
If you are in the UK I'm not sure that having the DNA proof will mean you will get it prescribed, but does give some bargaining power.
Go to the raw data in 23&me and type in the DIO2 snp doted here later on and see if it gives you anything just because they don’t report in it doesn’t mean the relevant info is not there. I did mine ages back and the DIO2 Hebe information is there in rawdata.
rs225014 It is not genotyped on the new chip. They report on some SNPs but not the 225014. I had an email conversation with them, they would not say why and would not answer my questions. Just said it would not be genotyped on any in the future. Now know why - GSK deal?
Thanks for clarifying UrsaP - it really stinks. I feel bad because I think I told people it was there on 23&me and that stuff is not cheap. None of it is transparent and to whom are they accountable - shareholders I presume.
regenenerus labs will do the test or you
Yes thank you...it is in hand. Just frustrating that 23 have stopped and I cannot get a straight answer as to the justification for why!
Sorry I didn't see the responses to this thread, 7 months ago, no idea why I missed it. Life took over probably.
I did know about the gene, I was more concerned with thoughts on why 23 had stopped genotyping the most important thyroid gene snp. I did ask, and got told that it was to do with their clientele demographic. I asked how this could be when thyroid disease on the increase worldwide and their clientele is worldwide. I was then told it was a group of experts who made the decision. I asked if this group of experts could be contacted to ask what they based their decisions on. I was told that they would not continue the conversation.
Fast forward 5 months - GSK announce they are buying into 23andMe. Coincidence? I doubt it. Influencing funding and research away from thyroid disease? Who knows... I know what I think.
I have been thinking about this test but I might reconsider it now.
Fortunately my doctor can order me DI02 test as they think that could be the culprit in my case.
Wow Justiina is that a NHS GP ordering a NHS test?
Justiina lives in Finland 
Ah!
we should go to Finland for treatment then lol!
They always leave some thyroid in when they operate for Graves as it often grows and starts to function again according to a Finish pal of mine who reluctantly had TT here fro Graves disease
Well ... in reality in one university hospital they diagnose Graves without testing and cut your thyroid gland out. Most of these people have had just Hashimoto, had bad flare up causing hyper symptoms which have been diagnosed Graves.
Over here the knowledge of thyroid issues is very bad , we only have handful of doctors who truly understand what to do. But if you end up their patient you get the best possible treatment.
Its a sad situation as over here it's about endos wanting more money, they want more funding and more vacancies. That's why it serves the purpose to keep patients undermedicated and forbid GP's to treat thyroid issues. Few years ago bad endos didn't have patients, but now even the worst ones are over booked.
Blimey it sounds terrible. Not the picture she gave me
She might have been lucky and only seen the good ones ! Like I said the good ones are really truly good ones and you get all treatment you need. If you live up north like I do the closest proper doctor/endo is 800 km from here.
Different counties have different "rules", there are areas where main hospital refuse to treat pregnant women on combo therapy. They force patients to go on levo only, its even on their webpage. Thats outrageous! There are several hospitals that have forbid to test ft3 which over here is different as lab does the tests that have been requested , lab never refuse ,its the doctor. Lab can suggest testing ft3 based on TSH and ft4 but doctor do not order the test. Fortunately you can get tested privately without referrals, we have plenty of private labs everywhere that do bunch of tests without referral.
So things are all over the place at the moment, but we have heard rumours that things are about to change some time soon.
That does not surprise me either and wonder just how much that goes on everywhere.
Yeah , seems like it is quite common in the end. Wellbeing of the patient is secondary.
My doctor had to quit because authorities forced the private practice to close down. They had no evidence of malpractice , all patients were happy , but authorities kept digging until they found a loophole to shut down the practice. Doc running that practice published recordings of phone calls between him and authorities and we can hear they had no valid reason but they did it anyway. They admit nothing bad has happened but as one endo in departement where possible malpractice is handled kept pushing and pushing guiding the department who is responsible for licenses to run a private practice until they gave in and discontinued the license of the doctor owning the private practice.
Its hilarious its all said quite clearly on the recordings. Good endos offered their opinion backing up the doc running the private practice but their statements were ignored. Only this one stupid cow had her day and she isn't even good endo!
Will see how the story continues!
That is truly awful what is that endos problem too busy meddling with good medical practice yet doing little or nothing to imprive her own knowledge and practice. These types seem to get away with it everywhere jealous of those clearly superior to themselves.the suffering they cause to others is immeasurable.
Wow from me too! I posted because people need to make sure that if they are having DNA testing, looking for this specific gene, then 23 is probably not the best option. From my further enquiry to them, apart from the fact they seem to be not answering questions I ask and answering one's they choose, they have said that they cannot test with 'chip v4' as their stocks of this chip are depleted. That even if they decide to check the rs225014 gene in future they can not report on it as it is 'proprietary information'?? (I'm thinking yep my proprietary info surely?) How come they have been reporting (genotyping) this gene up until this new chip. Basically the information they give you from one 'platform' or 'chip' version to another can change, and we don't know what we are going to get. There is a notice to say they updated in July last year, and that the number of checks have changed, or something to that effect, but perhaps they meant no of checks reduced! Getting less for our money! And my cynical mind questioning why this particular gene has been knocked off the checks? Background checks on company needed.
Exactamundo! Sounds weird suddenly DI02 isn't included.
Reading around, it looks as if the FDA got involved and started calling the shots.
Why I am not surprised! Like cFS research, they say there is no money but researchers have offered to do it anyway and what does FDA do? FDA ignores them!
And as you know FDA seems to ignore all European studies of thyroid issues. In Finland endos go on and on about American authorities and go mute if you ask but how about recent studies done in Europe. They pretend they didn't hear you.
Yes it does seem that by repeating mantra's they can just ignore the issue! Stock reply. And hopefully the little people will eventually get fed up of not being able to break down the brick wall and they will just go away and do as they are told - accept their lot!
Exactly! It's just beyond ridiculous they try that tactics during days ANYONE can Google and find proper information. If you dare to do so they say it's humbug even if it's exactly the same information doctors have access to. Like how long they think they can go and play this game , they keep getting busted on all corners and actually are already cornered and still they keep insisting they know better. Doesn't matter how many studies you show them they just keep pretending it doesn't exist. If it wasn't about our health it would be so funny.
It would make a great comedy! What I can never understand is why these so called eminent specialists' around the world, when it suits, cannot accept evidence just because it is conducted or reported in another country? What makes one piece of 'evidence' better than the next, when most of it is paid for by those who are going to benefit from the 'predicted' outcome!
I know the FDA was involved some time ago and stopped them reporting on thyroid disorders but the info was still in the raw data. I guess asking them directly if that snp has been removed (sounds like it has) might shed light on it.
I did ask back in April when I got my date and it shows in raw data but not genotyped. Was told it was decision based on demographics. Asked for explanation as thyroid conditions on increase worldwide, this a telling SNP. The then said decision by experts so asked if they could get the experts to explain their reasoning. Basically got told to go away they would not respond further. Knew it had to be one one two things.
They were going to issue separate test and change more, or been blocked from above. GSK deal was on the table presumably?
Thanks for the heads up UrsaP
I'm pretty sure I'd read a post here (some time ago now) that the DIO2 was no longer included in the 23 & me test. Finding the post could be tricky though
Really, that is the trouble, it is too easy to miss important posts like that as this forum is so busy. Wish I'd known. How many others have ordered the testing not realising that this is not now included and why did they pull it I wonder? Are other's still doing it does anyone know? Looks like more expense coming up!
It must have been at least a year ago but can't say with any certainty. There is a post on one of the face book pages could be ITT maybe thyroid hub for regenerus testing at a wholesale discounted price. Late last year some time. Sorry a bit vague. If I find it I'll give you the link.
Yes. I've just read an FDA document to 23 from April 17 - authorising certain reports- limited to 10. I do recall the post on ITT and have just asked about it. Will get it done if I can while I can before it is stopped by them too!
Yes, I think I read that it used to, but the amount of thyroid stuff they include was reduced some time ago.
BlueHorizon now do a package of thyroid relevant genetics. It includes Dio2
yes I have had it done, it is very simplified and the report is in a traffic light style, red being both parents passing on a duff gene, amber is one parents contribution and green is ok. There is for instance COMT but no information as to exactly which COMT and I have been told there are several. There is no identifying numbers for the genes reported on. Excuse my dreadful explanation but I am still struggling to understand what it all means. Can anybody recommend a book that is simple enough for a normal woman-in-the-street to study genetics who has just a biology 'O' level lol ??
Having not done Blue Horizon, I'm not sure of their format, or how much they have given you but there are other sites you can upload your raw info to. Promethease, LiveWello and GeneGenie. You might want to have a look and see if they may be appropriate. There is a small charge on them, this think Genegenie is voluntary. But I have found them fascinating. But I have 23 and Me - data [minus DIO2 rs225014!!] I have since gone through Regenerus for this SNP and found it to be heterogeneous. There are no books that I know of, doesn't mean there are none. But check out SNPedia. Might give you some info on specific genes i.e COMP but to be more specific you may need rs numbers. Are you saying Blue Horizon did not supply these and is it possible to ask for the raw data?
Announcement this week that GSK have bought into 23andMe maybe this explains them stopping genotyping the rs225014 SNP?? Are they getting involved to direct funds as far away form the importance of T3 as they can!
Blue Horizon don't provide the rs numbers, I don't know if they would if I ask and possibly that would be a good idea to clarify this. I had noticed that GSK have bought in to 23andme and that prompted me to look at their prices, and it seems they have made a reduction this week. I decided to buy myself a test in a false name so that I can check out the raw data, if I can get my head around how to do it that is! I think you are right about GSK and the T3 puzzle, it is something I think they would like to keep under wraps because without that information people are going to be ill and need drugs, obviously a good business plan for them.
Thanks for the SNPedia info I will take a look.
I am interested in the family history aspect of 23andme as it was a hobby years ago and perhaps I can renew my interest. I gave it up when I found a sister I didn't know I had and it knocked me for six, family secrets are so destructive. Our 86 year old father was not very pleased we found him out!! She is lovely though and I am glad to have met her and to have her as a friend.
Yes ~ I saw that and I can't remember the suggested reasons for it being no longer included, but I do recall being suspicious about it😳. I was thinking of doing it ~ hoping to find out why my brain only stores a small amount of the info that I read on here lol!😊
Given the plummeting cost of whole-genome sequencing, 23andme not including sequences known to have medical relevance will end up pushing people elsewhere. A recent article in Wired:
Today, a fully analysed whole-genome-sequencing test costs about $600 and takes just a few weeks to complete.
wired.co.uk/article/precisi...
(It almost looks as if the people who offer DIO2-only testing have influenced 23andme. And it makes the cost per gene look astronomically inflated when only a very limited analysis is done.)
23andme was challenged in court if I remember correctly a while back by the U.S. medical establishment. I don't think they wanted them around. I wonder if this is the offshoot, more limited testing?
Yep. Just reading correspondence between the FDR and 23 on the FDR site, seems only authorised in Apr 2010 to report on 10 conditions or diseases, so guessing that anything before that dr's can say is not ' reliable'? Why are they so scared of us knowing about ourselves?
You require the $2000 plus consultation first!
I don't !! LOL.... Big brother eat your heart out...we little people obviously cannot cope with knowledge!! I understand some people might get info and be frightened out of their wits by what they find or think they find. But that is why they mention to go for counselling first, or at least think carefully about what you do or don't want to know. And that is a personal choice.
Why is someone else allowed to keep information, that is our own personal information, from us? Surely the choice is do we want to know or not?
My mother diagnosed with terminal thyroid cancer, when asked how she was/felt about it, said she was fine. She had it. Knowing about it or not did not change that. And she just got on with it. It just meant that every day following that diagnosis was precious and appreciated and quality time. I honestly believe that it was this positive and realistic attitude that helped keep her going and active for over two more years.
In the states people seem to worry the information could be used against them in obtaining a health insurance plan or even future employment. People seem to feel strongly one way or another about these tests.
My American father has a German name. My older sister tested herself using 23andme & she did not show a drop of German blood. So I tested & did not have any either. I think there was a adoption on my father's side somewhere down the line but this was not something my elderly father could wrap his head around. He would not test ... It is all quite interesting as far as I'm concerned!
OH agree some of the ancestry stuff is quite fascinating I've only just started looking and hoping to get further on the family tree with it but...just frustrated re the DIO2 etc side of it. I did 23 as it was recommended to me but should have researched it further first.
Lesson learnt!
God I hope that was not me who recommended 23&me for DIO2 info 😳 if it was I apologise profusely.
I did discover I was a whopping 9% neanderthal and by chance I saw something on the box about Neanderthal genes having quite an influence on modern immune systems - I did wonder if there was any correlation between thyroid disorder and percentage of Neanderthal dna. 23&me have just blown their chance to research that one
No, not you, LOL! But it is not the person who recommended it who is at fault. They were offering it on the previous chip. They just suddenly pulled it. Funny I was talking to linda96 the other day about the higher Neadnerthal traits being significant. I'm less than 4% but in the top 93% of 23&me customer so 9% is huge! LOL.
23 don't want to know about thyroid health. If GSK have been instrumental in pushing this genotyping off the testing why? They are directing research and funds elsewhere, away from the 'cause' of most ill health, possibly?
Yes I am the highest % Neanderthal of all my dna relatives 😂🤣😂 but not the highest on the site which annoys me a bit - i’m the only Neanderthal in the village syndrome? They had bigger brains than modern humans and lived for much longer than Homo sapiens has managed so far so it is not all bad to have a hefty lump of their dna in me 😎
I had mine done by 23 and me a few years ago and then uploaded the raw data to both livewello and promethease. I have received a lot of info from these two sites and it has been very helpful for me. I have Hashis and seem to have a family history of thyroid disease on both sides of my family.
I think 23andMe were reporting on the DIO2 gene 225014, whereas they are not now. And by the sounds of it they will not be doing in the future. The info reported on across the DIO genes seems to be very limited. And not as helpful as it was in the understanding of thyroid function.
I've uploaded my 23andMe into Promethease, Finding that pretty easy to follow, so far.
I don't know more about this test but I am assuming you've read the following from TUK.
thyroiduk.org.uk/tuk/testin...
janeroar Wattsea Stourie Abi-Abster Justiina
Thanks Shaws - I hadn’t! Great stuff: very useful indeed.
Definitely important to get the right test.
Hopefully UrsaP you can remedy this soon!
The ball is rolling!
So will mine be once I have funds!
Yes thank you shaws . I'm miffed that 23anMe have stopped reporting on the 'important' numbers but with hindsight not surprised - wonder if they will start charging separately for it at some point?? The cynic in me! More £ to get the regenerus one done now!
There is a lot of interesting information and maybe pointers in the 23 and Me reports but the fact that they report only so much, questions some of the validity depending on what is required from the report. They do say the reports are not diagnostics of illness or conditions. It is just so annoying that I, and no doubt others, may not realise that they no longer report on DIO2 rs225014. And what they do report on is very limited. Which makes me think it is actually worth having the test done elsewhere.
It is necessary to have the right test I should think, otherwise we are wasting time and money in trying to get diagnosed and prescribed..
Certainly, the underlying problem is the very poor diagnosis protocol. The more we can find out for ourselves and present to our Dr hopefully the more they will see we are not just malignant time wasters.
Why aren't doctors and endocrinologists knowledgeable? Who trains them?
They know no clinical symptoms at all. Seem to only take account of the TSH and T4 and don't listen to patients. They adjust doses willy/nilly to keep TSH within a range. They don't take account of vitamins/minerals to make sure they are optimum - not just anywhere in the range, especially if low. Patients aren't offered an alternative is not progressing or even feeling worse.
We don't expect the professionals to have the actual problem themselves but if people who have been diagnosed with other conditions/disease I don't think they look for information on how to improve their clinical symptoms or have to source their own medications. They would look on the internet to get more knowledge about their conditions whereas it seems to me that most on this forum are looking for help as they are not improving through doctors or endocrinologists.
shaws Very true, the training is so 'p' poor! Clinical observations no longer exist. I went to GP, first time in I don't know how long, problem with my leg that won't clear. First thing she does is apologise for having a virus!! (what thought for already compromised patients?) She did not touch me to assess the problem with my leg. That said she was actually more 'attentive' verbally than many. But bring back training in clinical observations, how much time would it save, how better symptoms could be assessed and how much quicker would better diagnosis be made? At least she did refer me to rheumatology...wonder how long that will take... Not holding breath.
You have the same views as Dr Gordon Skinner (virologist) who despaired at the way we are now diagnosed and treated/untreated.
He arranged a conference and invited every Endocrinologist and one by one they all refused as they didn't want to discuss the 'parlous' situation many people were in because they either remained undiagnosed or diagnosed with anything but a dysfunctional thyroid gland or on too low a dose. (Dr S died through a heart attack and is sorely missed by his patients and particularly his staff as he was dearly loved and they said every day was a laugh and happy). There's few doctors who would have 10,000 testimonials sent by grateful patients to the GMC when he had to appear before them due to complaints made about him - complaints were not from patients whose 'lives he saved'.
Yes, I recall Dr Skinner, I followed what was happening to him and Dr Peatfield along the way, and then Dr Myhill. I was at the stage where I had been struggling for 20 years plus at that stage, and not very well at all. I was looking for any information to educate myself as GP's just kept fobbing me off. I remember reading that Dr Skinner had passed away, it was very sudden and very sad. I do believe I've read about him trying to get the Endo's together and them all refusing, perhaps an earlier post of yours?
Why? Why are they so blinkered. What is it they are so afraid of? Their own failings? Or are they being herded by a bigger, richer power? £££
Through the good Dr's mentioned earlier, I found out about T3, and asked the GP to issue me something other than T4, to be told there was nothing. I told him there was, T3, he couldn't issue it. So I asked to see someone who could. This was 2006/7) Originally saw an Endo with goitres and other symptoms, etc in 1981, aged about 19. Remember reading Dr P's book, and reading case studies and thinking 'Oh my God...this is my story!' For the first time I didn't feel like I was alone in this.
Over the years I have bought 3 of Dr P's books, loaned them out and not seen them again...the fourth is on my kindle in the hope I will keep it longer!
I did eventually get to an Endo who issued a small amount of T3. After checking cortisol, as GP and said that was 'normal' Endo said 'borderline low'. Dr P, three years later was astounded that an Endo admitted 'borderline low'. Mind you Endo did the SST at that stage and said fine, saw the result again recently and with the hindsight of better understanding, realised it was outside their normal range by c20%. Spent three years with Endo until he started treating the blood test again, and dropped him. At that point I booked to see Dr P. Wish I'd done it years before! It never occurred to me at the time that I could just go see him...I was so naive health wise!
It annoys me no end that people are now being pushed back to the Endo's. Endo's who have less idea as to what is going on than we do, in most cases. And the only reason for people being pushed back is so the Endo can be the one to say sorry you don't need your t3 all of a sudden. Despite another Endo saying you needed it 'n' number of years ago!
Sorry this has turned into a bit of a rant again. And I'm one of the ones still getting my T3. For now...for how long?
I am sorry the people to whom you loaned your books didn't return them.
I believe that Dr P himself is quite ill and with cancer so has been having treatment.
Diana Holme's whom he diagnosed immediately after her years of misdiagnosed then went to work with Dr Skinner for some time.
Dr Skinner's staff have been working hard to collate all of the Research they did - if you haven't seen the following post -
this is what the blue horizon medicals test includes
COMT rs4680
DIO1 rs11206244 and rs2235544
DIO2 rs12885300 and rs225014
FKBP5 rs1360780
PDE8B rs4704397
TNF-a rs1800629
TSHR rs179247
TRHR rs3134105
Do you know what results matter in the above?
I’m checking them out in SNP media - quite informative 😉
Thanks for posting these. I’m waiting for my results from BH
Hi. Seen your posts
Being thick as a post, is this the same as the Degenerus test please,
Just wanting to k ow if carrying gene so can make decisions. X - much cheaper that degenerus which I was about to purchase today
Regenerus will only give you the rs225014 gene I think? That is all I got back, when I did Regenerus because 23 and me pulled the genotyping of this SNP.
Thankyou. What is snp
It is pronounced as far as I know as a 'snip' but is snp. Not sure I can give you a definitive answer, but think it just related to a 'snp' within a gene, so, for example the re225014 is a snp within the DIO2 gene. Happy to be corrected if I have this wrong. Never really thought what the snp actually stands for...must google it.
HI kluang,
Did you contact BlueHorizon to get that information or where did you find it, can you let me know, please?
Cheers!
Hi kluang I found the DIO2 rs12885300 interesting as to do with hip morphology. I got my DNA around Easter last year, and in Feb 2017 my (then) 26yr old son had a hip op, thinking they were going to remove nodules from his hip bone to find that in fact the whole bone was misshapen. I wonder how many of us have this gene defect and how many are affected with hip problems too?
Has it been removed from the 23&me raw data? I presume so. If you can search raw data yourself it is a mine of information. Luckily my DIO2 is there in mine I had the test ages back. It is a bit scary these people have so much valuable and highly personal health information and seem totally unregulated. Too late now they know everything about my genetic make up if they tested for it....
The blue horizon test does not usually include the rs number but I asked for them and they have supplied the numbers that I have entered above. It seems easier to check out online if the numbers are available for the tests they have done. I am not sure what 23andme include from those but apparently not the DIO2. I believe all the tests BH have done are relevant and any one on its own could cause a thyroid problem, but not an expert obviously. The DIO2 will be very damaging if you have the bad luck of having all of it in the 'red' and then the nhs won't help you, so you need to then self treat or go private.
Will be interesting to see what has /hasn't been tested in previous 23 chips as opposed to the one I have V5 chip. Off to check mine and will ask someone I know had theirs tested some time ago under 23.
Yes I do have the DIO2 problem of very poor conversion but there is some going on. I have been well on NDT but never on Levothyroxine
I'm well on T3 but never on T4, but suspect the plan will be to put me back on T4 - like hell!
Fight tooth and nail to stay on it not that you need to be told that as I know you will. I felt like a non person on T4 I used to think I wished I had just died - I was pretty closely to death before I got diagnosis and treatment - because life on Levo was not worth living - 2 dimensional, a massive mindless fog with endless aches pains and a plethora of other problems dragging me right to the bottom level of existence. It was a huge disappointment to me after all what I had gone through to end up in that state and for stupid Doctors to think that was a result. This site helped me get the confidence to try NDT and I am so glad I did, problems rapidly resolved on it. My nails are still rubbish and my mind is not as agile as it was but I can live with those minor inconveniences. It even banished the severe depression I had suffered from for many years. That something so simple can put it all right yet the medical profession refuse point blank to use it beggars belief -and now this scandalous T3 business it is truly shocking stuff in the 4th richest economy in the worjd.
Shocking is not the word! I will of course be fighting till the death, and if T4 the only options that would be just a matter of time, and what gets me first the T4 or the hypo! I would opt for hypo with strict instructions to family to insist it is properly recorded as hypo and not the heart. diabetes or whatever else develops! Fingers crossed it does not come to that.
Hello
Re the DiO2 testing for gene
Where do you recommend please i buy it ( if you know please)
Thanks
I can't recommend as such - can only say where I got mine. I went to 23 and Me for both the health and the ancestry genetics, but as I found out too late 23 had stopped genotyping. I ended up paying out further to get my DIO2 checked separately, this was through Regenerus. but only got the one snp genotyped the rs225014. You might be best to ask on here for advice in a separate post? I don't know all the options open to you.
Hi Thankyou so much for reply
I'm tired and thick and not understanding of it very well, if you order d DiO2 are you saying they didn't give you a proper conclusion if you hold the gene from one parent or both? I thought this is what the test is for
No, not at all. I believe there are other companies that report on the DIO2 in a more comprehensive way. But as I had not used them I don't know the full options. Hence a post asking others might be useful for you.
The route I took gave me a result for the snp rs225014 only. There are other snps within the gene. And there are other related genes. 23andMe did genotype some DIO2 genes, not others, They only genotype a certain % I think, but they did not genotype and report on the snp rs225014, which is thought to be the most significant. They stopped 'genotyping' on this particular snp on the new V5 chip they are using, I believe they did say they would not be reporting on this snp in the future.
Ask on a new thread, and see what others recommend. Or check out the internet - do a search - I know of Regenerus, and you may find out more directly from TUK, and I've heard of Blue horizon, there must be other companies too, they may all offer various testing at a variety of cost. Depends what you want/need and can afford I suppose.
Good luck.
Thankyou. Yes I am about to order from Regenerus which is told about on TUK
But are you saying you don't get to know if you have the gene, as you used Regenerus too. that's all I want to know.
I'm sorry I haven't a clue about the things you are talking about
But can see it's not straightforward or a yes or a no you have t the gene - Iv trailed internet and thing blue horizon is the other one but it's under different name
Not sure what you mean by this? Not straightforward? If you have the defect it will show. You can have homogenous defect which means both inherited gene [one from father, one from mother] has the defect or it may show that one of the gene pair has the defect. The thinking is that if you have defect on one hand of the pair, you may well have issues converting T4 to T3, this may be impaired by a %. If both genes carry the defect, you may have a greater impairment in conversion. That is my 'basic' understanding of it. But genetics is very much in infancy and there are some Dr's who seem unwilling to accept that the defect as a definite problem with conversion. And hence ignore any DNA results.
Many thanks again for all info x
Yes iunderstand what you saying
Thanks for all this ursaP
What is hip morf? I have sore hip
No worries i get jist and il google later
Yes awful business
Does anyone ‘ really care’ 😞
Yes Jeppy WE all care. We care because too many people have lived and are living half lives blighted by a condition that is ignored and undermined. We mind because most, if not al,l at some point have endured some form of abuse by those who are suppose to be helping us, whether it be by being ignored, and fobbed of, labelled as hypochondriacs, or with mental health issues, or tapped on the forehead etc....
Mostly, I think, we care because we understand what each other has gone through. We understand that if we don't do something about this now, how much worse will it be for our children and grandchildren. 10 years ago I got T3, today I wouldn't. We can't let this backward slide continue
Please don't get despondent. Thyroid patients are starting to fight back - and if we all support each other, stand up and be counted they cannot ignore us forever. Good luck.
I've been very despondent indeed I was in denial at first as it was too painful to think I had been unheard for sixteen years and even felt fruitcake and had to put a brave face on everyday to keep a roof overhead for my children mainly. I was giving up on me, the person who was so happy and grateful in early years and loved life, I couldn't feel more let down but I'm determined not to let this define me or who I am (but it came pretty close)
Where his bone morphs into different shape I think. They thought my son had nodules on his hip bone but when they went in to scrape nodules off found his hip bone was more oval than round. Odd that this rs snp is in the dio2 gene?? The snp is rs12825300. I wonder how many of us thyroiditis have this defect too? And the significance of it?
.....did it affect his groin was it painful?
No I don't think so. He didn't find it too painful, though I'm sure it was at times. He was more frustrated with the 12 week no weigh bearing. Being a PT he is a very active lad and didn't appreciate he would be unable to stand on it for that long - he thought he would be back in work a few days later. Naive!! He managed it well, knew what he had to do to build himself back up and was back to normal on cue. [think he is hypEr!]
I did my Regenerus through a third party who reported that I have partial defect, in the DIO 2 gene snp = rs225014. From 23andMe genetics, I know I have another partial DIO2 snp defect which relates to hip morphology, and I found this interesting as 18 month before, my 25 yr old son had to have an operation to reshape his hip bone. Guess he may have this gene defect too! Not done DNA to confirm though.
It was removed late last year, certainly by the time I got my test back in April. It is removed from the version 5 chip. Several people, myself included asked why they had stopped genotyping it. The response was something to do with the demographic of their clients. When I pointed out that it was a growing condition worldwide, and it seemed odd to pull it at this point, I was told it was a group of experts who made the decision. I asked if they would ask these experts on what grounds they made this decision, to be told they would not be carrying on the conversation with me.
5 months later GSK announce they are buying into 23 and Me - say not more?
Are BP getting involved with genetics to redirect funding and research away from 'causes' because it is common sense that low thyroid function is closely and clearly linked to illness of all sorts. Understandable when everything in the body relies on it for good health? And BP make their money out of treating symptoms. Not causes. Didn't they say something in their announcement spiel about being at the forefront to be able to get ahead start on producing new medicines to combat symptoms.
So is the future genetics research going to skewed too...scary!
I had heard that Dr P was ill in hospital, but home again now. I did not realise it was cancer. The poor man. He is my hero.
I wonder if it was Diane that was with him when I saw last year with my son. Dr P has been my life saver. I owe him more than I can say. Seeing him was the first time in 30 years and more, of struggling was the first time I felt someone heard me, and understood.
My son said he felt better just for seeing him last year, (the adrenal boost of the visit - my son's problems seem to be adrenal based but conventional Dr's will not acknowledge. I know that feeling. He had the same affect on me in 2010. And for the first time in nearly 30 yrs I felt my husband who came with me, actually realised that I had problems and was not just 'malignant'.
He gave me hope and helped me take control.
Thank you for the link.
Meant to say, I'm not too bothered about the books, if it helps just one person to find better treatment for themselves, then a book is a small price to pay. I know that Dr P's book helped me understand that I had a condition that was not being correctly treated.
Such a generous spirit!
More a frustrated one, seeing so many of us struggling and being ignored. Knowing how T3 has helped me and I'm just so angry that others are being denied it. And in fear of losing it myself!
On the book front that is ...yes it is disasterous for so many and puts the kybosh on improvements in thyroid disorder treatment and so utterly unjust. It is worse than going backwards because at least there was NDT then. Endless letters to MPs, petitions etc etc seem to have zero impact leaving us utterly powerless to improve our lot. It is a very bad scene
It is but we have to keep fighting it. I suspect we will have to demonstrate in great numbers to be heard.
Yes I have visions of women deliberately chaining themselves to important gates etc real in your face stuff to get the publicity.
"There are thousands like you darling" (dr Ps words, darling man )
True caring person with honest heart
A hero to many of us. A complete saint! Sadly he is right there are far too many thousands. The question is - how do we get these thousands standing together to stand up and be counted so that the real extent of the problem can be seen. No figures recorded, and of course now that most have had T3 withdrawn, there is not going to be any record of any benefit. So they will just keep spieling the 'no evidence of benefit' line. And that is what decisions are made on. Lies, dame lies and statistics!
No evidence of superiority of T3 over T4. Forget to mention that the superior benefit of T4 over T3 doesn't exist either.
We need statistics. Numbers to show who is benefiting from what. Who was not benefiting from T4, I'm pretty sure my Dr never noted my constant visits and complaints that T4 was not doing anything for me, only making things worse. 20 years of being ignored on T4.
Hence ITT campaign needs all the support we can get!
👍. Set up a post? If have sorry I've not been on here a lot
Yes, one of a dying breed
I'm not helpful in these situations, I just think every one of us should be writing to somewhere...?..... each to write to our surgeries All writing the same subject and let downs and prick hopefully a few consciouses, write to the bodies that be, on and on and on and on, thousands of letters in their mailbag,
I'm being silly it just I senses me at the moment
(Up my Adrenavive )
Yes that is what ITT was set up to do - draw as many of us together to all act together. We tried all writing to MPs,jounallists and all sorts of bodies. - NHS. DoH, Chief Med Off. And an untold number of others - lots gone on. Largely stonewalled. But more going on, including collaborative work with a number of thyroid patient groups which can only be good. If you are on FB do check us out on ITT. All we ask is that members help if/when they can when there is a push in a certain area. Just being on there shows support.
That idea has been talked about! We need to think of something on a very large scale and original. Something that cannot be ignored. Publicity being key!
To advert. How much?
Tv
There has been a few tv interviews Lyn did one on the One show around Easter last year? [was it that long ago... losing track of time] Several patients have got airplay for their plight, but it seems to me to be lip service as nothing further comes of it. I know lots of us wrote/emailed in to the Oneshow last year and there was some mention that there might be a follow up but nothing was forthcoming.
I notice SNPmedia web site lists under the snp what 23&me chips check for it. Trouble is you need to know the snp to do the checking. Luckily my older test had all the ones listed here by kluang
You can do a search under SNPedia and it will bring up topics related to Thyroid etc. Can get lots of information on specific snps from it. Also Have you looked at Promethease and Livewello sites, Genegenie too. May be a small charge. But I am addicted to Livewello. There are template reports listing SNPs and you can create your own reports too. Genegenie good for Methylation and detox, and think they ask for a voluntary donation only. The others were about $20 or so. I have no connection with them only as a customer so this is just my opinion.
I did all the thyroid stuff from SNPMedia, oddly I have markers for Graves but not Hashimotos. I had very mixed symptoms and for many years had boundless energy I have read some believe it starts out as Graves and eventually turns into Hashimotos. Know of the others but not bothered to do anything with them - thanks for info
I think Ive read it is possible to have both at the same time. Like you I have significantly more markers for graves than hashis and as HypEr more prevalent in family suspect more likely for me too. I had antibodies c1982, can't see what and can't see any recorded since, took a further 10 yrs to get diagnosis. Not sure i ever had boundless energy...LOL anything but, but managed.
I'm enthralled with the genetics. Spend hours searching through... so much more to all this... wish I could understand more. Best of Luck.
It is mainly hypo in the female line but I have one hyper sister. Quite a bit of non Hodkins lymphoma too which Leeds genetics said it has a hereditary component looking at my genes (years back) in the family but it is not inevitable or anything. I was pretty energetic from my 20’s with bouts of feeling tired I developed osteoarthritis and spondylitis and felt cold all the time. By my 30’s I had heart pains, tendinitis, my hair was thinning but I was still mainly energetic, things went further downhill in my 40’s. I was advised by a relative’s endo to get a thyroid function test due to a high inheritability of multi lobed thyroid gland and the lymphoma but was told by the GP -who to his credit ran the Test - it was all normal. I Would like to see results in hindsight to check if that is true he was a very good GP trained at guys and st Thomas where I eventually got under an endo who was pretty good - sticking very much to Toft guidelines for optimisation but very T4 only. My medical notes were lost around the first test so not sure if that was too I should see if they can find it at my present practice. By this time I felt sure I had hypothyroidism. I was shocked the tests were normal and thought I must be a hypochondriac and imagining it all. The bouts of tiredness became more and more severe I moved for work and was told my symptoms were the menopause despite telling them now two close relatives had lymphoma of the thyroid - not any suggestion of a scan or further blood tests. Heart pains got worse I had piles and digestive problems then shingles on the optic nerve and I began to go really downhill yet still I had good energy levels for the most part I was very thin and there was never any sign of a goitre. By my early 50’s things came to a head I felt atrocious falling asleep in the day and feeling utterly exhausted with short bouts of crazy energy and the depression engulfed me totally. I saw a new GP and told him I was hypo and needed a thyroid function test - why do you think you are hypothyroid? Terrible unlifting depression like a suffocating huge black cloud enveloping me - how about some antidepressants? Look here it’s well beyond being treated by those things - this is really serious! I told him about the family history and he was really good after he got a more coherent picture from me - although I was in a very bad way by then being coherent was a challenge! -
and I had started to pile on weight I was so hungry I could eat 3 massive dinners and still feel utterly famished there was no way to control it it was like a very primordial drive like my body had been hijacked by pure survival mode. They thought I was hyper after 1st blood tests but I told them they got the wrong persons tests back! I was deffo hypo. More bloods and then an urgent call I was right I was hypothyroid and to get my medication ASAP and take it as soon as I could - 2 days before Xmas. I became so cold I thought I was going to die it was unspeakably awful I laid there freezing cold heating on full 13 tog duvets and two whippets on me and I just prayed I would die and my suffering would end and the dogs would have the common sense to eat me until they got rescued...but luckily I got the Levo just in the nick of time and woke up - much to my amazement - feeling a tiny bit warmer. I am sure it was close as what I said to myself was similar to my father’s words and who actually did die that night.
It makes me mad to know I am not alone in going through a similar hell in this day and age before getting a diagnosis. I wonder how many women are still dying of it like we were back in the 1880’s when it was a death sentence. I have never felt quite like I did - two years on Levo was probably the most dreadful part of all the hope of being better but just living a half life. I used to think it would have been better to have died than be this shadowy sub humanlike “thing” but I discovered this site and decided I had nothing to loose by trying NDT - what a transformation all those horrid symptoms banished no more depression energy levels slowly restored 5 stone of blubber I put on, slowly lost again. All in all I am very fortunate cheating death and all this bonus where I feel pretty good! In some ways I feel better than i ever did in decades. I have a few issues heart problems that seem to have caused blood pressure problems tho this may be hereditary, the grottiest nails ever...but only small potatoes.
One hopes genetic testing might be an effective diagnostic tool in the future but only if the medical profession adopt screening programmes especially targeting all those with relatives with thyroid problems. It would be cheaper in the long run than the current diagnosis debacle.
It is a scandalous situation fx
Oh my TSH110 . I am sitting here holding back tears from reading this. A dreadful story, have you lodged this with TUK or ITT, I hopes and hope it went into the dossier that has just gone to the DoH.
Your story is not going to be the worst but it must be close! Sadly too many similar situation. I can totally relate, though I'm feeling thankful that I I have not had your life. I had many of same symptoms and responses as you. Taking 10 years to get diagnosis. Was eventually told, 20 yrs, down the line, my eye ulcers, which flared around time goitres did at age 19, and continued to reoccur intermittently throughout and still do, were due to Herpes Simplex virus. And not my thyroid. Like you the failed promise of relief on T4 was soul destroying, especially when made to feel like it was in my head because everyone else was fine on T4!! Just such poor understanding and poor recognition and understanding of the impact of other conditions - adrenal for one.
I too wonder how many deaths have occurred which have been due to thyroid disease but recorded, and hidden behind heart, diabetes, mental health or stoke or other conditions.
Who would expect us, human beings, to be going through this hell, now, in 2018 in a supposedly civilised country. it borders on barbaric, and if there are people out there who do know that we are being abused then it is barbaric. Have we learnt nothing from the suffering of the past?
we should be doing something about it, they are getting away with murder literally here
Thanks just seen your reply Ursa. Much appreciated. Seems to make no sense that decision I agree.
DIO2 
Dio2 Gene 
DIO2 gene
