I've had hypothyroidism for 8 years, but been borderline most of my life before that.I decided to come off levothyroxine last year as I've never had a normal blood test, despite being continually told I had to up my dose (150mcg last going off). I don't feel it made any difference, and when I've looked into it seems levo doesn't seem to work for everyone.
I've been trying to manage my symptoms holistically with a whole food diet, lots of protein and exercise, however I've recently started taking thyroid supplements using bovine thyroid because I'm heading into peri-menopause and feel like I need a bit of help.
I should also add, my TSH levels are always high but T4 is normal.
I've been looking into NDT, however this seems pretty difficult to get on in the UK.
Is there any way to buy this or is it prescribed only?
The supplement I take has bovine thyroid in but also has filler ingredients like brown rice powder, so I'm not sure of it's efficacy.
Has anyone had any luck getting NDT prescribed?
I'd also appreciate any advice at this point. It's a bit of a minefield!
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Strongwelshgirl
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You are hitting the eternal problem of non-prescription desiccated thyroid products. We do not know how potent they are, whether they are consistent within a bottle, or between batches. If you find yourself doing well, you are OK as long as that continues. But if something (you or the product) changes, you can have difficulties.
You would be a very rare case to get prescription-quality NDT prescribed by an NHS doctor of any sort. A few private doctors might do so.
I suggest you post your blood test results. Do include reference intervals (ranges) as they vary across labs and over time.
A couple of links below.
This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.
The normal range: it is not normal and it is not a range
This blog has the abstract of this paper plus link to the original full paper. Also includes some extra links to a video and some other related information.
Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).
This is a link to a very good article in the British Medical Journal discussing what the 'normal range' really is. Very readable.
The normal range: it is not normal and it is not a range
This blog has the abstract of this paper plus link to the original full paper. Also includes some extra links to a video and some other related information.
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
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.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
NHS only tests TG antibodies if TPO are high
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
What is reason for your hypothyroidism
Autoimmune?
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 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
Levothyroxine doesn’t “top up” your own thyroid it replaces it
ESSENTIAL to be on high enough dose
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS
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Thai NDT?
NDT & DHEA 
Thyrovanz - New NDT (food grade)
