Hi I was wondering if I could ask some advice regarding my latest results.
I've just had bloods done so anticipating the usual conversation with my GP about my TSH being too low....
I've screen shot my results since 2015 basically as I've been tracking them as my TSH rarely changes, even with a reduction in thyroxine. If thyroxine is reduced so is my T3 to a point where i feel physically ill (body hurts, tired, weight gain etc)
My understanding is that because I'm hashimotos and have a goitre that TSH can't be the only measurement so this is what I tell them.
A couple of years ago I got a referral through my health insurance to see a endocrinologist due to conversations with TSH with the GP, but also because my T3 has been historically low in range. Theyve said I've got poor conversion of T4 to T3. (When the NHS insisted on reducing me to 125mg thyroxine my T3 went to 3.6)
My endocrinologist put me on NDT (half grain with reduced levo) and this improved T3 but not my TSH so he increased my NDT and reduced Thyroxine again. I didn't get another blood set with him as Nuffield screwed up the billing of the first set bloods and kept hounding me for it and missed their Bupa deadline so its put me in a situation where now I feel too awkward to go back to Nuffield so I've been using Thyroid-S which I've sourced myself.
As you can see from my latest set of bloods, my T3 and T4 have decreased (taking 60mg NDT and 100mg Levo) albeit still higher than the read in August 22 when I was taking 150mg Levo.
Does it look like the 30mg NDT was more optimal for me? Or should I take more NDT to up the T3&4 further? I am about 1.5 stone heavier since the Sept 22 results so wondering if my weight gain has impacted the results.
I'm just confused as to why the T3 has dropped when taking more NDT
Thanks for any advice you can give.
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Bellsonit
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It would seem that you only need a small dose of NDT to kick start your metabolism as your ' best result ' looks to be last September :
Do you remember how you felt then - were your symptoms of hypothyroidism reduced ?
Once on any thyroid hormone replacement option the TSH is not a reliable measure and we need to track on T3 and T4 readings - and ideally keep the T4 at around 80% tops :
I'm so glad you said that about TSH as the conversation with my GP drains me....
Ah ok - that surprises me - I thought the increase in T3 from my NDT would make it higher - I'll be honest I'm not sure how it all works in terms of T4/T3 and metabolising it - sorry
I've looked at my endocrine notes and from what I can see on 30mg I didn't notice so much difference, but with 60mg I felt better - but then I didn't have bloods after starting 60mg due to the dispute with Nuffield so dont know if the results would have been different then.
Before my blood test in May 24 I was taking more NDT because I'd not had it for a few weeks due to running out but a month before the bloods I reverted to 100mcg levo and 60mg NDT. Do you think being on a slightly higher dose 2 months prior will have had an impact?
Also do you think the different brands impact too? At the time of the Nuffield bloods in Sept 22 I was on ERFA, this time I'm on Thyroid S.
Also, can being 1.5 stone heavier dilute the potency of thyroid meds?
Well - I'm now confused by your above explanation and what do you mean by
the T3 in the NDT making it higher - what is it that you are referring to ?
and how long have you been on this current dose of 100 mcg T4 + 1 grain NDT ?
I self medicate NDT - Thyroid S - and found I was still improving some 18 months later which was when I realised my bra wasn't cutting in any longer and guess I had dropped at least a dress size - as my body shape now is more a straight average than a Humpty Dumpty.
Taking any form of T3 - will lower the TSH -
Doctors in primary care are making judgement calls on just TSH blood tests - and doubt they have any idea about where within the ranges T3 and T4 need to sitting for you to be well - hence all the problems we encounter in primary care and the rise in patients seeking out specialist, private health care appointments.
Once taking any form of thyroid hormone replacement - you must dose and monitor on the Free T3 and Free T4 - when taking synthetics -
and when taking NDT - you tdose and monitor on the T3 only - as for some the T4 is much lower than when taking T4 only and this does not matter if you feel well.
I have only ever taken Thyroid S -
USA Armour is said to have the same T3/T4 content - 9 mcg T3 + 38 mcg T4 - per grain:
and Canadian Efra meant to have the least fillers and said to contain 8 mcg T3 + 35 mcg T4 per grain :
What i mean is by moving from 30mg to 60mg NDT I'm getting more T3? Is that right? So I would have thought my T3 reading would be higher on 60mg?
Well done on the Bra! Thats my hope too, I really hope being on the optimum dose will help in that region - as I am a humpty dumpty
I have been diagnosed since I was 18 and am now 44. Until 2022 I had only ever taken levothyroxine. Taking NDT has definitely improved things I'm convinced but I'm just confused why my T3 dropped despite taking more within the NDT
Personally I'd drop the T4 and concentrate on getting your NDT dose optimal :
The T4 will take around 6-8 weeks to fully leave your body and instead add 1/4 grain more NDT weekly or fortnightly - and listen to your body and track on your physical symptoms - eg - blood pressure, pulse and temperature AM and PM.
If you get to 2 grains with no untoward issues - stay on 2 grains for 6-8 weeks and then run a blood test to see what is going on.
If your T3 has moved and you feel improved - but not quite ' there ' yet - start again slowly increasing in 1/4 grains :
There comes a week where you just feel uncomfortable in your skin and just not as good as the week prior - so drop down to the previous dose - stay on that lower dose for 6-8 weeks and then run a blood test and see where your T3 is then.
The conversion ratio when taking T4 monotherapy only works when the T4 is in the top quadrant of it's range and said to be 1 / 3.50-4.50 - T3/T4 - with most people feeling at their best when they comes in this range at 4 or under :
I see NDT as a bit like Self Raising flour as it is a ready mix of T3 and T4 at around a ratio of 1/4 - T3/T4 which seems to suit many thousands of people.
Its such a shame GPs wont consider it because it has helped me. But it means I panic during blood tests now I'm using Thyroid S just incase i run out or can't get it and my blood results show something that causes them to alter my thyroxine.
Ok so what you mean is completely stop T4 and just build NDT to a level where i feel good?
I'm trying to work out the conversion ratio you're mentioning above?
Also realised I had my nuffield reference range in wrong for Free T4 so when I was on 30mcg NDT and 125mcg Levo T4 was 75% through range not 102% 🤦♀️
Do you know why the t4 testing and ranges were changed? I've noticed that my T4 looks way off this month however I've just discovered that the ranges and method for testing have changed? Is that why they look so low now?
Different Laboratories can use different blood testing machines and therefore use different assays and ranges - but - if working on % terms through ranges both readings should come out the same :
The conversion ratio only applies when on T4 monotherapy and only when the T4 is up in the top quadrant of its range and irrelevant looking at your results -
I was just trying to explain that NDT has ' this conversion ratio ' ready-made in the grains -
and a bit like using Self Raising Flour - rather than Plain Flour + baking powder and apologies if I've confused you further.
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
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
what vitamin supplements are you taking
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)
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)
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)
NDT or T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
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thanks - NDT sounds better all around... 
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