An Interesting Dilemma : I saw this story in... - Thyroid UK

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An Interesting Dilemma

Sparklingsunshine profile image

I saw this story in the Guardian today theguardian.com/society/202...

And it got me thinking about genetic testing, which seems to be the future of modern medicine and something that looks likely to be expanded to cover other diseases and risk factors. It's already used in certain cases of breast or ovarian cancer where there's a strong family history , Angelina Jolie being a famous example who had a double mastectomy as she had a strong genetic risk of breast cancer based on her family history.

Personally I don't know if I'd want to know. I'm adopted so have no idea what is in my DNA. It can be both a blessing and a curse. The only time it's bothered me is when I was expecting my kids as I hoped I wasn't potentially passing something nasty onto them.

Yes forewarned is forearmed but there's also the damage having such knowledge can do to your peace of mind and anxiety levels. And of course the nature of genetics can be random and you might never develop a disease even if science says you could.

it's slightly off topic I know but as thyroid disorders run in families clearly genes play a big part in it. Would you want to have genetic tests to spell out your risks and livelihoods or would you prefer not to know?

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helvella profile image
helvellaAdministratorThyroid UK

If some genetic variant, let's call it V1, is clearly and ambiguously a cause of a particular issue - whether heart or thyroid. Fine, we can see the sense of checking and changing response depending whether V1 is found - or not.

And if V1 only has that effect if V2 is also present, it starts to be more difficult.

Even within the area of thyroid alone, consider the claims that a variant (W1) affects T4 to T3 conversion. Seems great - those with W1 have a good argument for getting T3 prescribed. But what if the cause in another individual is W2? You can easily imagine them being dismissed because they don't have W1. Until the person treating them knows about W2, they will be denied T3.

That is, you might be able to prescribe because of known variants. But you mustn't not prescribe unless your understanding is perfect.

Also, the mention of statins reminded me of something I listened to earlier or yesterday. It seems that if you do choose to take a statin, it is better to take it at or near bed-time, when it works much better.

You can imagine all the genetic testing, convincing the patient they should take a statin, then fail to tell them when to take it for best result!

Batty1 profile image
Batty1 in reply to helvella

You see this sort thing in Arthritic diseases you can be crippled with pain but if your markers don’t show it then your dismissed as just having pain with no known cause.

Regenallotment profile image
Regenallotment

had exactly this conversation with my 86 year old Mum over the weekend. She’s absolutely not interested in knowing, whereas I am fascinated by the science, the hereditary links to illness through our families. I can trace all manner of conditions through aunts and uncles, grandparents etc.

But

I am very aware the application of the knowledge is of limited use. So many lifestyle and combinations of factors can alter outcomes.

That said, I’m glad to have a little foresight in my back pocket with regard to Dio2 and MTHFR etc.

🦋💚🦋

Jaydee1507 profile image
Jaydee1507Administrator in reply to Regenallotment

Almost forgot. Believe it or not, the functional genomics report + my medical history was enough to get my GP authorised via Haematology to run a few B12 blood tests that GP's aren't usually allowed to do. I'm having them done tomorrow. So it's worked well for me. 😄

Regenallotment profile image
Regenallotment in reply to Jaydee1507

ah interesting!

Sparklingsunshine profile image
Sparklingsunshine in reply to Regenallotment

They say genes load the gun but lifestyle pulls the trigger!

TSH110 profile image
TSH110 in reply to Sparklingsunshine

I have had an exemplary life style, but it still pulled the thyroid disorder trigger. ☹️

There are events in one’s life, that are out of one’s control, which can be very affecting.

No amount of lifestyle choices can bat them away, so these should also be factored in along with the genes.

Batty1 profile image
Batty1 in reply to Sparklingsunshine

I don’t believe this to true for everyone.

Jaydee1507 profile image
Jaydee1507Administrator in reply to Sparklingsunshine

It's not just lifestyle, but life events too. Look at how Covid has induced long covid in so many people, and there was nothing they could have done to change that by lifestyle measures. My health took a massive downturn when I gave birth for the second time, again, another life event that normally speaking shouldn't change your life other than the happy addition of a baby. A lady I knew back then got thrown into psychosis at the birth of her baby and she never recovered.

Lifestyle pulled the trigger is not really the full story at all.

Sparklingsunshine profile image
Sparklingsunshine in reply to Jaydee1507

No indeed it was an off the cuff remark.

Jaydee1507 profile image
Jaydee1507Administrator

I think this is going to be a very individual decision based on many factors. Having already done an Ancestry DNA test for genealogy purposes I could check if I had the DIO1 & 2 genes, then I ran a functional genomics report to find out if I had the MTHFR gene and any others that might be affecting my health.

Understand that I have been unwell and health deteriorating for many years. My mother and her mother before her were both illegitimate, so there are definite unknowns in my family, although I now believe that my mothers father died age 54 of heart disease. My two brothers have heart failure at young ages.

The functional reports available at the moment really only have relatively low key genes like MTHFR etc. They won't include anything major like Huntingdons Disease or any other life changing diagnosis. There are genes that I have risks for several bowel conditions that I definitely don't have at least yet but it's been a real revelation for a few things and very validating indeed for how my health has panned out. So long as you can take it on board in a fairly light way then there's no reason not to do do it IMO.

dtate2016 profile image
dtate2016

My Dr. (Here in the US) did the genetic testing without asking. (More than 5 years ago when the cost of the testing was quite expensive) After getting past the surprise and advising him of my inability to pay (Insurance rejected), he gave it to me as a gift. It came back as MTHFR polymorphism. It was scary at the time. The test itself was marked in bright red that a serious heart attack was imminent within 5 years. I do believe (looking back) that that was probably a likely outcome.

Then I learned HOW the MTHFR genetic variant was contributing to my Hashimotos (so it is not off topic). According to Dr. Ben Lynch in his book “Dirty Genes”, those of us with the MTHFR genetic variant eliminate toxins slowly / much more slowly than those without the variant. (Some estimates say that as many as 25 to 30 % of those of European decent have the variant).

The Dr. treating me for Hashimotos had to have some good reason to offer this gift, he told me he was doing it for many of his thyroid patients - he died shortly thereafter, but how wonderfully kind! He knew, he had to know that some of us would use the information to further our health. And I did.

I then found Dr. Alan Christianson an endocrinologist, (in 2020) blazing the trail and discovering how the modern day diet is full of hidden iodine. Here in the US it’s in our table salt and commercial bread. He talks about how in some people iodine becomes a toxin, and the MTHFR suddenly fell into place for me. How is it that some us can ingest massive amounts of iodized salt, etc. (it’s in almost all foods to a greater or lesser extent) and some of us can’t? I followed his recommendation to eat a low iodine diet for 30 days and I began to feel much better. 2 years now and I am off of all prescription thyroid replacement - after 30 years of mostly NDT. (I am 65).

I do believe that genetic testing will play a huge part in curing thyroid disease. To be sure, not all thyroid disease / Hashimotos is caused by the MTHFR genetic variant (not saying that), but again, it IS a piece of the puzzle in finding the root cause, and finally, finally, finally making real progress towards healthy thyroids (the canary in the coal mine!). We know there are other genetic variants with corresponding modifications in perhaps diet, environment, vitamin, mineral, herbal nutrition etc. that can greatly reduce the need for thyroid hormone replacement / eliminate it altogether. Without genetic clues, we try the shotgun blast of trial and error, and sometimes find success - many here have shared these finds.

Soon, very soon, when genetic testing becomes more routine, I do believe we will find out WHY we suffered so long, why thyroid hormone replacement offered only limited relief (especially Levo!), and that all along it was something as simple as too much iodine / poor toxicity elimination, or some other “borderline” remedy.

janeroar profile image
janeroar in reply to dtate2016

v interesting thanks for sharing. I’ve just found a second hand copy of one of Dr. Alan Christianson thyroid books. Would be interesting to hear from others if they’ve found his approach helpful ?

TSH110 profile image
TSH110

Thyroid disorder is very prevalent in my family.

Routine thyroid function tests could have saved me a huge amount of suffering.

It seems a no brainer to me to screen for it, especially in those at higher risk… but I bet one of my relatives would have avoided it, like they did with their very serious symptoms. It was much to their detriment.

Untreated thyroid disease is of little value to anyone’s health and well being. It is a treatable condition.

I’d rather know.

CoeliacMum1 profile image
CoeliacMum1

Yes I have thought about it only the price has put me off.

I have attended a couple of Lifecode GX webinars ( just out of interest) and find the whole thing fascinating.

I was mainly looking at their epigenetic tests, where they can test let’s say how well vitamin D is used and transported or if indeed we block it, and obviously certain supplements may benefit you, you may need more or less of something. These are areas which we can improve our health to prevent future problems.

These tests weren’t telling us any nasty conditions really, just basically things we can do to help ourselves, and of course finding these things doesn’t mean at that point you have a problem just predisposed to them, and our lifestyle and environmental factors pulls the trigger and we may get some conditions.

However there’s some saying if you eat a well rounded diet you’re covering this area and it’s pointless wasting money on these dietary type testing and it’s a money making thing!

Well I think those doubters are maybe overlooking vast majority of us have some slight issues or conditions and it maybe helpful to have more of something, we don’t use well, transport or block or convert in our diet… these factors can help some, also those adequate levels circulating, how do we know if we are using them well… with that we’re still getting poor outcomes, regardless of these tests looking ok.

I think once we have autoimmune conditions either bought on by environmental, viruses, lifestyle, stress or dietary issues or just born with them from the start. It maybe helpful to know, and get easier access to help from NHS rather long winded ways around things and years of problems .… I realise it’s very common to have more than one. In theory once diagnosed with autoimmune condition we should in an ideal world would be looked at more thoroughly for others if needed …we know this doesn’t happen we spend so much of our time ruling out other things, where if it was there with clear view we had a certain genetic predisposition we would be hopefully get these related issues eg Thyroid and adrenal or coeliac disease would be considered straight away rather than 8 yrs down the line of poor health.

In my case I was asymptomatic of my coeliac disease and maybe if I knew to avoid gluten I would be ok today as I’m sure due to coeliac disease/leaky gut has bought about other problems maybe.

Just my thoughts.

dayoff profile image
dayoff

As I myself, my mother and my mother-in-law all have hypothyroidism - I don't fancy my daughters chances! However, I wouldn't want her to have this test and then be convinced she's definitely next. That's not healthy for the mindset. I went around with symptoms from the age of 25 until I had my second child at 33, being fobbed off. I worry about the damage caused and the possible consequences to my first two children. In my daughters case there are so many things I teach her about diet and lifestyle and how important health is. I give all the kids a vit D containing supplements and fish oils. I will chat to her about hormone contraception as there is a probable link to it being a trigger. Most of all she is armed with knowledge that i am still gaining 20 years on, that I never had. She won't be left undiagnosed for 7 years for starters. I would make sure she got the best treatment possible if it happens but there is always the chance it won't as I have told her. If she had the test my money is on her having a susceptible gene but I can't see how that would help her. I hope that helps in some way.

marigold22 profile image
marigold22

By doing both the DIO2 and MTHFR genetic tests, my life was positively turned around. Both returned as heterozygous, mutated genes from one parent. With that knowledge I was able to vastly improve my health, ie convince the endo that I needed T3 only, and take Methylated multi B vitamins.

I really do think that anyone who is not leading a normal life after one year of being diagnosed as hypo, should try their best to buy particularly the DIO2 gene test. If the DIO2 test returns positive, there is a good chance that the MTHFR gene will also be mutated. I went from a psychiatric mess with ME/fibro symptoms, to as normal as I can possibly be. In fact the best I've ever been in my life.

I went round and round in circles for thirty years, feeling so incredibly ill; not knowing what on earth I could do to improve my mental health and general health

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