Thyroid Genetic DNA: I wanted to share my recent... - Thyroid UK

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Thyroid Genetic DNA

Thyroid17 profile image
11 Replies

I wanted to share my recent hypothyroid issues, in case it helps anyone. I am waiting for a copy of my latest blood work to arrive in the post (can share later when arrives). That said, I can share a little of the remarkable results.

Diagnosed around 2010, after poor health for some time, I accessed Armour NDT, with the help of the wonderful Dr S (greatly missed) which made a significant improvement but still never quite right. Struggled with increasing costs, so often under-medicated despite GP agreeing to monitor my own GP supervised NDT/Levo combo. Discussed possibility of non/poor T4 to T3 conversion, Gp wanted me to go Levo only to evidence any potential change but I could not continue as health plummeting on 175mcg Levo and I did not want to lose my job.

Eventually saved for Blue Horizon Thyroid Genetic DNA test (with help of Thyroid UK discount and special offer). Results multiple but most notable as follows:

D101 (D1) Gene (T allele) - poor conversion of T4 to T3 (RED result)

TNF-a-Inflammatory cytokine (A allele), associated with overreactive immune response and prolonged inflammation (RED result)

(Amber: TSHR, FKBP5, PDE8B)

These are just the 'red' results, others marked amber or green. With this knowledge I changed from NDT/Levo combo to T3 on my own. My GP was astonished that my TSH (she goes by) went from 44.23 to 1.0 in around 8 weeks. GP asked how I sourced it but I refused to comment. My aches and pains, extreme fatigue, brain fog and other symptoms virtually gone. She advises: unable to prescribe T3 but writing to endocrinologist at local hospital to request consultation and possibility of T3 prescription (fingers crossed as cost crippling) submitting a copy of the DNA test and last two recent thyroid tests (evidencing dramatic change). So basically what I am saying is, if you can manage to, I strongly consider the Thyroid Genetic DNA test as it has been a game changer for me, after all these years.

Hope this may help someone.

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Thyroid17
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SlowDragon profile image
SlowDragonAdministrator

Well done

Vast majority of endocrinologists are diabetes specialists and useless for thyroid

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3 or NDT

There are a few NHS

Some are both NHS and private…..could start privately and transfer over assuming T3 trial goes well

tukadmin@thyroiduk.org

Levothyroxine plus T3 is cheaper than NDT…..even on private prescription

Private prescription T3 enables access to Thybon Henning 20mcg tablets via Specialist U.K. pharmacies

Currently costs 50-60p per tablet

Typically daily dose T3 is between 10mcg- 20mcg …..usually as divided dose splitting T3 into 2 or 3 smaller doses spread through the day …..and levothyroxine on NHS

Thyroid17 profile image
Thyroid17 in reply toSlowDragon

Thanks for this info. I haven't had word of the end appointment yet, so no NHS prescription as yet. GP says cannot prescribe (not sure if that's can't or won't due to cost). I've got 25mcg which I am splitting, half in morning and a quarter around teatime or occasionally another quarter if exhausted with work. Thanks re: Thyroid UK email list link, I'll contact. Armour was going up in price every single order, I was priced out but at least now realise T3 was what I really needed. Thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply toThyroid17

GP’s are not allowed to initiate T3 has to be via endocrinologist

NHS currently very long waiting lists ….so might want to start via private consultation

ALWAYS get full thyroid and vitamin testing done BEFORE consultation otherwise first consultation is waste of time

What vitamin supplements are you currently taking

Thyroid17 profile image
Thyroid17 in reply toSlowDragon

Good to know this thanks. I was on 175mcg of levo.

SlowDragon profile image
SlowDragonAdministrator in reply toThyroid17

So you were on NDT plus 175mcg Levo?

Or 175mcg levothyroxine only

Are you now just taking T3 or 175mcg levothyroxine plus 25mcg T3

Important to take same dose T3 every day …

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine were you on with TSH of 44?

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine or T3 or NDT

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies

Have you had both thyroid antibodies tested?

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. Both are autoimmune and generally called Hashimoto’s.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am last dose levothyroxine 24 hours before test

On T3 or NDT - day before test split daily dose into 3 smaller doses, spread through the day at approx 8 hour intervals, taking last 1/3rd of daily dose 8-12 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

Many members have managed to get T3 prescribed on NHS after testing positive for Dio2 gene variation

Thyroid U.K. link all about it and testing via Regenerus

thyroiduk.org/deiodinase-2-...

regeneruslabs.com/products/...

Roughly where in U.K. are you

Some CCG areas are better than others for T3 funded on NHS

It is getting easier as price drops. NHS currently paying £63 per 28 tablets 20mcg T3…..down from £268 3-4 years ago

Link to prescription numbers for England

Typically 6 prescriptions per person per year

Total for last year 58,500

Searchable by CCG area

openprescribing.net/analyse...

Thyroid17 profile image
Thyroid17 in reply toSlowDragon

A test years ago, returned as Hashimoto's but I haven't had a possible goitre since 2010 when I had 'classic moonface' very puffy face and neck. I did not realise there are four types of Hashimoto's. DNA test also said I had an 'amber' risk TSHR-A allele (TRab) antibodies (risk of Hash or Graves) not a clue what it means. I do take vitamin D every day and B12 and selenium and magnesium when I can. Never had a B12 test but Vit D test years ago was low. At a later stage, I was on 100mcg levo and 1 grain armour but TSH stayed around the same I think (I think I must have had a higher TSH on levo only which wasn't tested as I changed back to Armour shortly before test as I was getting so ill, can't remember the exact date). Sorry for confusion, 44.23 was post 175 levo only and a week or two into Armour/levo combo, when I felt a little better).

SlowDragon profile image
SlowDragonAdministrator in reply toThyroid17

Essential to test vitamin D twice year when supplementing

And test folate, ferritin and B12 at least once year

That usually means testing privately

Come back with new post once you get results

Medichecks currently have 20% off until 31st may

You can buy ahead to test in few weeks time

Only do private testing early Monday or Tuesday morning

Thyroid17 profile image
Thyroid17 in reply toSlowDragon

Thankyou, much appreciated

Thyroid17 profile image
Thyroid17 in reply toSlowDragon

I am in central Scotland (Forth Valley NHS)

Litatamon profile image
Litatamon

This is so helpful for others, I thank you greatly for sharing.

You're on T3 only now? Do I have that right?

(My apologies if I have missed this in the posts. Found your level of t3, thank you)

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