NDT help and advice desperately needed, please?

[limonene7]

Hi everybody! I am new to the forum. I was diagnosed hypothyroid, 3 years ago and levothyroxine has not cleared my symptoms and I actually now have more symptoms since going on it.

My results when I was first diagnosed August 2018 were;

TSH = 14.53 mIU/L

Free T4 = 13 pmol/L

Free T3 = 4.1 pmol/L

My latest blood results from Medichecks (on 100mcg of Levothyroxine) in May 2021 were;

TSH = 0.91 mIU/L

FT4 = 18.5 pmol/L

FT3 = 3 pmol/L (below Medichecks normal range of 3.1 - 6.8).

TPO antibodies = 116

I’m desperate to get off of Levothyroxine and try NDT. I will be extremely grateful if anyone could offer their thoughts or advice, please?

[SlowDragon Administrator]

Welcome to the forum

Very helpful detailed profile

For these past 3 months on 75mcg of Levo, my NHS test results on 14th August 2021 are;

TSH = 5.35

FT4 = 14.1

Obviously you need to increase levothyroxine back up and likely need addition of T3 prescribed alongside levothyroxine

Or trial NDT

You likely need ongoing continuous supplements to maintain optimal vitamin levels

Eg once vitamin D was high enough, rather than stopping supplements, changing to maintenance dose

Similarly with iron/ferritin

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3 or NDT

...NHS and Private

[e-mail]

Obviously many months wait on NHS, so realistically private is only option

Worth doing Dio2 gene test too, if not done it

thyroiduk.org/deiodinase-2-...

[limonene7 in reply to SlowDragon]

Hi SlowDragon, thank you ever so much for your reply! I will do a you suggest and thanks so much for that! May I also ask, do you happen to know roughly what it might cost per year to be on T3 or NDT privately from a UK doctor? Thanks again!

[SlowDragon Administrator in reply to limonene7]

Typically dose T3 is 10mcg - 20mcg daily …usually as split dose as 2 or 3 doses

Private prescription enables access to Thybon Henning 20mcg tablets, by far cheapest option. Available at 50p to £1 per tablet from specialist pharmacies in U.K.

So if on 3 x 5mcg T3 (most common dose) and get at 50p per tablet….that’s £12 approx per month. Or £24 at £1 per tablet

Patients cut 20mcg into 1/4 tablet to get 5mcg doses

Initial consultation is usually around £200-250

Follow up cheaper

NHS paying much higher price

£101 per 28 tablets 20mcg T3 - £70 per month at 3 x 5mcg

Or

£90 per 28 tablets 5mcg - £270 per month at 3 x 5mcg

So it’s still relatively difficult, but not impossible to get prescribed on NHS but T3 must be initially prescribed via NHS endocrinologist on 3-6 month trial

No idea on current prices NDT

Other members might post

[limonene7 in reply to SlowDragon]

Thats really helpful, thank you so much, Slowdragon!! I really appreciate that!

[pennyannie]

Hello Limonene and welcome to the forum :

Well the first discussion must be to increase your T4 thyroid hormone back up to where it was - and suggest if, you can, see a different doctor.

The TSH was orginally introduced as a diagnostic tool to help identify a case of hypothyroidism and it was never intended to be used once the patient was taking any form of thyroid hormone replacement.

When on thyroid hormone replacement we generally feel better when out TSH is down around 1 but it is the T3 and T4 that we should be dosed and monitored on - but sadly in primary care, most doctors seem to work to just a TSH blood test and since they can only prescribe T4 - their hands are tied, and or their knowledge limited and just read the computer dogma with no understanding of the implications.

The acceptd conversion ratio when on T4 only medication is said to be 1 / 3.50 - 4.50 - T3/T4 with most people preferring to come in at around 4 or under :

So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting 6.16 :

So conversion can be compromised by low vitamins and minerals, especially ferritin, folate, B12 and vitamin D and no matter how well and clean you eat, if your metabolism isn't running smoothly you likely are no able to extract these vital nutrients from your food, and we need optimal, and not just anywhere in a range, as some of the ranges are to wide to be sensible anyway.

Since you have the added issue of Hashimoto's AI thyroid disease I read it's essential to first " heal your gut " and many people reference Dr Izabella Wentz on this AI disease as she herself has the disease and worked her way through to now becoming something of a leading authority on the subject.

I'm with Graves Disease post RAI ablation in 2005 and became very unwell about 8 years later and only ever offered monotherapy with T4 :

I found this site which helped in my understanding of all things Thyroid and you might also like to dip into Thyroid UK who are the charity who support this forum.

I have resorted to self medication and I tried T3 - Liothyronine alongside T4 - that worked and then I tried Natural Desiccated Thyroid which I found softer on my body and am now around 3 + years into this option.

If you can afford to go private, you are more likely to get NDT prescribed than through the NHS. as although NDT was used successfully to treat hypothyroidism for over a 100 years it seems Big Pharma and synthetic T3 and T4 are the NHS choice.

So, maybe first choice is to ask for referral to an endocrinologist of your choice ( check out Thyroid UK special list of recommended endos ) as you are not doing well on monotherapy with T4 only and your conversion way out of the accepted conversion ratio.

I would prefer to be " in the system " rather than " out " as self sourcing is always a worry as websites come and go and choice of reliable suppliers getting smaller, by the week.

First and foremost you do need to know where your core strength vitamins and minerals sit as no thyroid hormone replaement works well until these are strong and solid to support your body and in turn, support conversion of whichever option you choose to go forward with.

[limonene7 in reply to pennyannie]

Hi pennyannie! Thank you so much for all your help! I do have Izabellas Wentz book, it is great and I have been working on gut health since I was diagnosed.

May I please ask you, do you know roughly what the cost would be to be on NDT prescribed and obtained in the UK vs the cost of sourcing from abroad and self medicating?

[pennyannie in reply to limonene7]

Well off the top of my head no - but a lot more expensive than self sourcing :

There are pharmacies listed on the Thyroid uk website who supply NDT if you have a private prescription :

There are a few doctors around who prescribe NDT on the NHS :

If you go into analyseopenprescribing ( it maybe openprescribing then analyse ) you can see by NHS surgeries or CCG where it is being prescribed and for product you enter Armour - the most well known brand of NDT.

Will PM you :

[limonene7 in reply to pennyannie]

Thank you so much, pennyannie! I will look out for your PM, thanks again!