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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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
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.
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
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).
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Genetic variance and effects on thyroid hormones
Found this on Thyroid UK - DIO2 Genetic Test
The Endocrinologist From genetics to therapeutics: Thyroid covered
genetic tests for conversion issues etc
Deiodinising enzyme genetic deficiency and T3
