Genetic testing : Does anyone have a view about... - Thyroid UK

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Genetic testing

AliF profile image
AliF
58 Replies

Does anyone have a view about the new genetic test being offered by Blue Horizons? Is it worth it ? Does it actually tell you anything useful ? Is it

accurate ? Worth the paper it’s written on? It’s not cheap!

Here’s their blurb.

Introducing the DNAblue Thyroid Genetics Cheek Swab

Just a reminder that our offer for the new Thyroid Genetics Cheek Swab at £139.15 will only be valid until the end of the month, see below for details -

Website price of this profile is currently £199.15

Code BLUDNAJAN will give £60 off in the month of January meaning that you will pay just £139.15 for the entire profile.

Introducing the DNAblue Thyroid Genetics profile from Blue Horizon Medicals – It is a simple DNA cheek swab test that looks at 10 genetic variations across 8 Genes that are either directly or indirectly linked to thyroid function. We invite you to discover how your genes control the production of your thyroid hormones, and how variations in your DNA might impact on their effectiveness, and ultimately your health.

List of investigations

Your Pituitary Gland's receptivity to TRH which stimulates the secretion of TSH

Your Thyroid Gland's receptivity to TSH

Your Thyroid Gland's receptivity to TSH signalling

Conversion of T4 to T3

The clearing of RT3 from circulation

Your Body's response to stress

Detoxification of compounds that impact thyroid hormone levels

Your Body's response and susceptibility to inflammation and infection, both of which affect thyroid function.

A very different approach

What is particularly attractive about the DNAblue Thyroid Genetics profile is the fact that this represents a very different approach to the thyroid question - rather than just relying upon measurements of thyroid hormone production (ie quantities), you can now have an understanding of how effectively the thyroid hormones are behaving within the body (ie quality). Many clients have told us over the years that they have symptoms of thyroid disease, despite apparently normal thyroid function test results. GPs also encounter these questions every day across the world.

Now, and we believe for the first time for all of these genes together, Blue Horizon clients have an affordable opportunity to gain this crucial insight into their thyroid axis, and armed with this information maybe then have the ability (in conjunction with their specialists) to tailor their needs accordingly.

The report itself is very detailed (see attached) and we provide over the phone or email post results assistance. Due to this and the relatively benign nature of the genes we test, our laboratory arrangement does not require us to offer or charge for genetic counselling which makes the proposition much cheaper

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AliF profile image
AliF
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Clutter profile image
Clutter

AliF,

Have a read of Jimh111's thoughts in healthunlocked.com/thyroidu...

AliF profile image
AliF in reply to Clutter

Thanks Clutter. Basic message. Waste of time and money! Just tempted because of my usual clutching at straws for an explanation and a way forward which I am still searching for. But I will save my cash.

Clutter profile image
Clutter in reply to AliF

AliF,

I've always wondered what advantage there is in knowing that expression of gene xyz has predisposed you to hypothyroidism or diabetes. It's not like knowing you have the gene will cure the hypothyroidism or diabetes is it?

AliF profile image
AliF in reply to Clutter

No - nothing like. I am just wavering about whether to start taking T3. My blood test results are “within range” and I am nervous about trying it and it not helping or giving me palpitations. At the moment I have hope, but feel pretty awful. Various supplements don’t seem to help. Endo is reducing my thyroxine ( again) to 100 a day to try and increase my TSH before trying T3. I know that is a pointless goal. I just thought if a genetic test showed something it might in some way legitimise the addition of T3.

Clutter profile image
Clutter in reply to AliF

AliF,

Saying your results are 'within range' doesn't mean you are optimally dosed. What are your TSH, FT4 and FT3 results and ranges?

I felt crap on Levothyroxine and well on Levothyroxine and T3 which was the only legitmacy I needed.

AliF profile image
AliF in reply to Clutter

Your story gives me hope! I don’t have the full results yet as they are being posted to me. The endo told me over the phone TSH was 0.16 and T4 19.3 with a range of 10.8 - 25.5. T3 not tested by NHS. I have posted results from my last Blue Horizon test some time ago. Maybe I should do another? There is also all the advice about not taking T3 until all of your vitamins and minerals are optimal. Don’t know why that is. Surely if it’s T3 you need then you need T3. I did read the post that Shaws put up the other day.

Clutter profile image
Clutter in reply to AliF

AliF,

TSH 0.16 is low and below range but not suppressed. T4 is slightly over halfway through range. There is scope to increase Levothyroxine dose if you are symptomatic but it will suppress your TSH.

I do think you need to know FT3 level before adding T3. Adding T3 to your current dose will also suppress TSH.

I agree, if you need T3 you need it now, not in 3 months when vitamin and minerals are improved.

AliF profile image
AliF in reply to Clutter

I did manage to persuade the Drs to increase my Levo a while back ( partly on your advice) to 125 but it certainly didn’t make me feel symptom free. My TSH was lower on 125. It is slightly higher now on 100/125The endo wants it higher still before I take T3. I now am back at 100. He argues I am over medicated which will be “putting a strain”on my heart. I’ve been taking Selenium b12 and B vits for a while. Guess i’ll Have to do the usual Blue Horizon blood panel costing about £100 to tell me about T3 and bit levels. Last time my T3 was within range— roughly in the middle I think. More worthwhile than the genetic test anyway.

Clutter profile image
Clutter in reply to AliF

AliF,

You aren't overmedicated. You might point out to your endo that being under medicated can put a strain on your heart. If your Levothyroxine dose has been reduced your FT3 will probably be lower than mid range.

AliF profile image
AliF in reply to Clutter

As you know, they tend to judge everything on TSH. Mine is low. Therefore they say I am slightly over medicated. Think i’ll bite the bullet and test T3 myself, post on here and then go armed! Don’t really understand how they can prescribe T3 but never test for it!

Clutter profile image
Clutter in reply to AliF

AliF,

Low TSH doesn't mean you are overmedicated. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

AliF profile image
AliF in reply to Clutter

No I know. And I used that to persuade the Dr’s to increase my Levo from 100 to 125 but it certainly didn’t get rid of my numerous symptoms.

Clutter profile image
Clutter in reply to AliF

AliF,

Well it won't have done if your FT3 is low so you need to find out what level it is.

AliF profile image
AliF in reply to Clutter

Thanks Clutter. My FT3 level at the time my Levo was raised was mid range. I’ll test again. The thyroid uk link says this

“Liothyronine (T3): Some people see little or no improvement on levothyroxine. The research on whether the addition of T3 is helpful is inconclusive although there has been recent evidence to show that there may be a genetic fault in some people and that these people feel better with the addition of T3.”

That is the genetic fault I

am wondering if I have!

Anyway thanks Clutter.

Clutter profile image
Clutter in reply to AliF

AliF,

Perhaps, you'll only know if you have the DIO2 gene test. Alternatively, check your FT3 level and if its low add some T3 and see whether that improves symptoms. Low/deficient ferritin, vitD, B12 and folate will also cause symptoms similar to hypothyroidism. Everything needs to be good to feel well.

AliF profile image
AliF in reply to Clutter

My endo also suddenlymentioned Lupus the other day! I appear to be a medical mystery.

Ray22 profile image
Ray22 in reply to AliF

If you are upping your levothyroxine to much, your pituitary gland can start to be "lazier" and not produce as much TSH. I have a pituitary adenoma and have studied the effects a lot!

Angel_of_the_North profile image
Angel_of_the_North in reply to Clutter

Well, it might be interesting to know why - although you really need to know why that gene is expressed as well (not just that you have it). Might also give a hint as to other things to watch out for or try to un-express or whatever the term is.

Clutter profile image
Clutter in reply to Angel_of_the_North

AOTN,

Well I wouldn't want to know that I was at high risk for developing something like Huntingdon's or Alzheimers for which there is no cure.

Angel_of_the_North profile image
Angel_of_the_North in reply to Clutter

Well, there might be cures for Alzheimers, but it might be useful to know about Huntingdons so as not to pass it on to children. I still think that epigenetics is more important than plain inherited genes - you could also plan for self euthanasia, if necessary

Clutter profile image
Clutter in reply to Angel_of_the_North

AOTN,

Until there are cures I don't think it is advantageous to know about likely genetic pile ups.

Self euthanasia has always been a part of my forward planning as I would like to avoid some of the more unpleasant aspects of aging.

loueldhen profile image
loueldhen

I had a 23andme genetic test out of curiosity. It shows I don’t have a DIO2 problem. But I know I have a levo problem. I don’t tolerate it at all. I don’t think the genetic tests are very useful yet.

AliF profile image
AliF in reply to loueldhen

I tend to broadly ageee

Kipsy profile image
Kipsy in reply to loueldhen

loueldhen - thank you for posting your comment as this couldn’t have come at a better time. My functional nutritionist is keen for me to do the 23andme test as I wondered if I have the MTHFR gene. She has always thought I don’t melethate properly (if that’s the right expression) and said the test would be useful for the future. I’m torn- the price (currently on offer at £119) doesn’t include an extra cost of £46 for some deeper analysis so it’s quite a chunk of money if I do all of it. Any more thoughts? Thank you!

loueldhen profile image
loueldhen in reply to Kipsy

I haven’t got as far as analysing my mthfr function yet. I haven’t paid for extra analysis. The info is available without it if you have the time and brain power (or maybe a functional nutritionist). It’s an extra £10 for postage (which I think is a bit of a con) if you have a friend/relative who already has done one can recommend you they will get a £20 amazon voucher. (All this comes out when you go through the order process. Although I would guess you can’t do both offers together). I ordered one as a late Christmas present for a relative yesterday. So clearly I think the test is useful. Information is power etc but it can be disappointing to pin your hopes on ‘an answer’ to find your data doesn’t match. It’s not a roadmap. If you can afford it it might add a few more pieces to your jigsaw.

Kipsy profile image
Kipsy in reply to loueldhen

Thank you so much. I will give it some thought. Much appreciated.

marigold22 profile image
marigold22 in reply to Kipsy

What happens if you can't melethate properly? What are the symptoms? Sorry, perhaps I should write a new post.

Kipsy profile image
Kipsy in reply to marigold22

marigold22 I believe it means you can’t get rid of heavy metals very easily. This leads to elevated homocysteine levels which in turn creates deficiencies in folate, B6 and B12. It also makes processing folic acid hard. Not everyone with Hashimoto’s has this gene variation though. Basically, I would quite like to know if she’s right about my possibly having it or not as the supplements she advises I take to support methylation (eg Innate Response Formula’s B complex) often end up costing more than, say, Jarrow’s B Right. I believe those with the gene variation benefit from long term support for methylation which would be an ongoing cost I may be paying for without needing. I’m not medically trained and the above has been sourced from Izabella Wentz’s second book.

marigold22 profile image
marigold22 in reply to Kipsy

When the councillor phoned me with my DIO2 results, she talked about methylation, but it was so long winded I couldn't keep up. Thanks for your explanation

marigold22 profile image
marigold22

I paid around £160 last June for a Regenerus DIO2 test. As I expected it returned as positive from one parent. Some members have said a positive DIO2 test doesn't prove anything. However, I got my result by email so I printed out 6 copies. Oh boy, was that £160 worth every penny. I gave one copy to my GP who didn't really comprehend; she then sent me to Endo and I gave her another copy. From that DIO2 result I got 6 months of T3 on the NHS; and will be getting another 6 months NHS T3 in March. I got what I needed and wanted. Good luck

AliF profile image
AliF in reply to marigold22

I am assuming the addition of T3 has helped?

marigold22 profile image
marigold22 in reply to AliF

I was changed from T4 only to T3 only by the renowned Dr P in 1995. He told me I couldn't convert T4 to T3 just by looking at me. Bit of a long story - but he was in Surrey, private only, fairly expensive, so I only saw him a couple of times, and talked on the phone. He only put me on 20mcg a day and it was not enough. Not until I went against my GP and increased up to 40mcg a day did I begin to feel better.

Treepie profile image
Treepie

See last night's "Trust Me Iam a doctor" l.

AliF profile image
AliF in reply to Treepie

I did happen to see that but they were talking about very different genetic testing. That was a waste of money — deffo!

Well, I bought one so I'll tell you when I get the results. It's really just for my own information as I self-medicate so have no doctors to convince.

If I thought that it would tell me who my father was, yes. I am only joking but would love to know.

marigold22 profile image
marigold22 in reply to

This is getting off topic now but I did a MyHeritage DNA test (MyHeritageDNA.com) to see my ethnicity and where my ancestors came from.... very interesting. My sister's mother-in-law did one and discovered she was half Indian so her dad wasn't her dad, although she had always wondered!

AliF profile image
AliF in reply to marigold22

Off topic —but amusing — although not for her!

in reply to marigold22

Things hidden in the closet comes to mind.

Diddums profile image
Diddums

Understand the 'clutching at straws' comment and just to say I have had the original Blue Horizon DNA Mouth-swab test as was curious about outcome, as (under £100 I went for it) now being offered a thyroid test.which you rightly identify as available 'until end of month',EXPENSIVE and still considering this but thank you for asking question. In case others want to consider the process seems to be :Blue Horizon post a mouth-swab test kit with full instruction . You take test and following all instructions you post back to them.

About 2 weeks later a DNA Genetic Trait Report (approx 30 pages and very specific) and Lifestyle & Nutrition Report (approx 35 pages ) is emailed to you. You then can file or print, Report stresses its 'not a definite decision on your future and most can be helped in some way' ("refer to Nutrition and Lifestyle book".....general advice)If printing best to do colour as Red Amber Green are used to demote given situation.I have found test interesting and thankfully no nasty surprises.

AliF profile image
AliF in reply to Diddums

Interesting. Thanks Diddums. I certainly don’t want any nasty surprises. What sort of things could it reveal that fit in the “nasty” category? Feeling so unwell and wretched at the moment I simply couldn’t cope with anything more to worry about!

Diddums profile image
Diddums

Ditto! Sorry you feel the same! Suppose it could reveal all sorts of 'nasties' My advice would be leave all to fate (esp if 'full up') Yes I need answers BUT at what cost?both monetary and personally Will Thyroid Report change anything? NOT if they are only looking at counseling opportunities. Interestingly I had the Excessive Tiredness blood test done but despite 'tiredness' being a main symptom of Under active thyroid but T3 wasnt testedby Blue Horizon labs. I have made up my mind and may go to a good naturopath instead. This one sarahbowlesflannery.co.uk/s... my sister out and costs are similar.

Fees

Initial appointments can take between 1 hr to 1 1/2 hrs, and follow up appointments take up to an hour.

Methods of payments accepted: most credit/debit cards, cheque or cash

First consultation £159

Follow up consultation £87

First consultation with food intolerance testing £187

Full body screening (EAV) first consultation £243

Full body screening follow up £131

Live & dried blood analysis £243

Live & dried blood analysis follow up £131

As well as appointments in her Richmond office, Sarah also offers Skype and telephone consultations.

Take care, like you I have 'normal' readings BUT!

AliF profile image
AliF in reply to Diddums

Boy — that lot of tests comes to more like a grand!! Did you say she sorted your sister out ? Did your sister have Hashimoto’s? I have extreme fatigue although sometimes feel sort of tired but wired. Whole body thrumming, lots of aches and pains and stiffness. I take various supplements which don’t seem to help and currently 100 Levo which also doesn’t seem to help. Really hoping T3 is the answer. Had this for 4 years now although not always as bad as this.

Diddums profile image
Diddums in reply to AliF

My siste had stress headaches, which she takes magnesium for, but didnt have every test.......just to give an idea, I certainly hope t3 is answer too

AliF profile image
AliF in reply to Diddums

Stress headaches are certainly a different prospect than Hashimoto’s. Good luck!

Diddums profile image
Diddums in reply to AliF

Hi Friend,.....written by Dr Isabella Wenze, the famous pharmacist( who was diagnosed with Hashimotos at age 27 years) She is inspirational

Here's the thing I didn't talk about when I wrote you about my brand new Hashimoto's program. I didn't say how much it was WORTH.

First, having your life back and owning your future? I truly believe this is priceless. Here’s what I know... we can put up with a LOT when it comes to pain and discouragement - and just keep going. But it’s not really a life. It’s an exercise in endurance.

Feeling WELL again? Being HAPPY? Having HOPE? Yes. That’s like winning the lottery. (See below in the PS for the huge percentage of people who saw improved symptoms…)

If you also add in your ability to live fully and move slowly OUT of the doctor’s office and endless lost days of you r life - sick days at your job - or even jobs LOST over Hashimoto’s and thyroid disease? It’s hard to measure the impact of investing in the Hashimoto's Program.

And know that I am one hundred percent on your side. 100%. So there’s a 30-day money-back guarantee.

Click here to learn more and take control of your health and life.

Your friend,

AliF profile image
AliF in reply to Diddums

Thanks Diddums. I am on her mailing list so I did receive that.

Margar profile image
Margar

Is that you Jude? This is Mags! This is incredible!

AliF profile image
AliF in reply to Margar

Not Jude — sorry!

HughH profile image
HughH

I have had a look at your Blue Horizon test results from about a year ago. At that time your Free T3 was close to the top of the normal range, which would be very good for most people.

As you are still unwell it could point to the possibility of Impaired Resistance to Thyroid Hormone, more commonly known as Thyroid Hormone Resistance. With this condition people tend to need high doses of T3 and above norman levels of Free T3 to feel well.

As it is genetic you would expect to find others in your family with thyroid, autoimmune or other health issues.

AliF profile image
AliF in reply to HughH

My father had an under active thyroid and took a tablet each day but only after he was about 65. I’ve got a way to go before I get there! He died 20 years ago so I can’t ask him any more. Others on here suggested I might need a little bit of T3 added to the T4. About to do another Blue Horizons thyroid blood test so will see what the results are this time. It still doesn’t give the full story though because of RT3 or what is happening at cellular level. I just know I don’t feel well and haven’t done for a number of years.

HughH profile image
HughH in reply to AliF

Have you tried taking your basal temperature? It gives a good indication of how well your thyroid hormones are working.

AliF profile image
AliF in reply to HughH

No. How/when should I do that ? I know how, obviously, with a thermometer- duh! - but basal? Various times throughout the day ? I can be freezing cold or boiling hot— sometimes both at the same time! My hands are always cold at work when everyone else’s are warm!

HughH profile image
HughH in reply to AliF

A basal temperature test should be done as soon as you wake up and before you get out of bed. In women who are menstruating, their body temperature varies with the cycle; creating errors which can be avoided if the basal temperature is taken on days 2, 3, 4 and 5 of the cycle.

It doesn't really matter which kind of thermometer you use when doing the basal temperature test, although it is important to be consistent in how you do it.

1) Note the reading and do it for several mornings so the results can be averaged out, since they may vary slightly day by day.

2) If you have taken your temperature under the tongue the normal temperature is 36.5ºC to 37.2ºC (97.7ºF to 99.0ºF).

If your temperature is below 36.5ºC (97.7ºF), hypothyroidism/ISTH should be considered if symptoms are present.

If your temperature is above 37.4ºC (99.2ºF) hyperthyroidism/overmedication is possible if symptoms are present and if there is no other illness present to cause a fever.

AliF profile image
AliF in reply to HughH

I have HRT patches. Recently increased due to low oestrogen and high sex hormone binding globulin levels. Change the patch twice a week.

I have night sweats sometimes. Always have a hot water bottle though !

And a thermometer that goes in the ear.

Ray22 profile image
Ray22

I think what people are missing here is the fact that with the genetic testing they can see exactly why you are having the thyroid issues versus just knowing you have them and treating the symptom they could then start to go in and treat the actual problem what is causing the thyroid problem it's a better way to fix an issue then to just treat the symptom of it which would be the hypothyroidism or hyperthyroidism or hypopituitaryism or hyperpituitaryism, etc.

Sleepymoley profile image
Sleepymoley

It may be a bit of a long-shot, but I had similar issues and had a full blood panel done (when I changed GP) which showed that my hypothyroidism was being managed perfectly well by the levothyroxine, but what was making me feel like rubbish was the fact I had undiagnosed hereditary haemochromatosis (iron overload disorder). Might be worth seeing what your ferritin levels are next time you have a blood test... Good luck

AliF profile image
AliF

Thanks sleepymoley. I am Just waiting for some blood test results from medichecks which I think includes iron. I have been anaemic in the past but not for years. We’ll see what they say and i’ll post and find out what others think on here. I didn’t go for the genetic testing but have tested for reverse T3. Endo is going to try me on a little T3 but hasn’t tested for existing levels so I wanted to know what was going on before I started taking it!

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