Blood test results in advance of endo appointment + what are the MHRA guidelines for NDT?

[Reefseeker]

Thank you SO SO much everyone who responded to my post last week about NDT absorption and how I should approach my endo to ask for NDT rather than synthetic T4/T3 therapy. Your responses have made the world of difference.

I have my blood test results taken last Friday ready for endo this Thursday (I pay for private tests as the hospital often loses my results). Here are the results since I was put on combined T4/T3 in 2021 after taking NDT for around 6 years since about 2015 first under Dr P, then myself with yearly blood tests.

Blood tests taken between 8.30 and 9.30 in the morning, depending on availability; no T3 since the previous evening, no thyroxine since the previous morning. I take very few vitamins as I can't fit them in between food, caffeine and allowing an hour or two between food and drink and thyroid meds and vitamins. I take thyroxine and T3 upon waking, then top up the other half of the T3 dose between 4-5pm, by then I am always very sluggish. You will see I have put the treatment doses next to the results.

I have tried to represent the results here, but the tabs keep jumping everwhere, so I hope they make sense.

COMBINED THERAPY T3/T4 UNDER ENDOCRINOLOGY SUPERVISION SINCE APRIL 2021:

Starting dose from endocrinology, April 2021: T3 10mcg, T4 125mcg daily

Blood test results after starting combined treatment:

The lab ranges during this time have been TSH 0.27-4.2 FT4 12-25.5 FT3 3.1-6.8

Levels below are TSH, FT4 and FT3 from left to right

August 21 Levels 0.02 15.5 4

Percentage -6.4% 25.9% 24.3%

Conversion T4:T3 = 3.875

Treatment Increase T3 to 25mcg, maintain T4 125mcg daily

February 22 Levels 0.05 10.2 2.6

Percentage -5.6% -13.3% -13.5%

Conversion T4:T3 = 3.923

Treatment Increase T3 dose to 30mcg, increase T4 dose to 150mcg daily

September 22 Levels 0.02 11.2 3.4

Percentage -6.4% -5.9% 8.1%

Conversion T4:T3 = 3.294

Treatment Maintain T3 30mcg, maintain T4 150mcg daily

March 23 Levels 0.01 14.4 4.84

Percentage -6.6% 17% 47%

Conversion T4:T3 = 2.955

I am awaiting my next appointment this week.

I really want to go back on NDT when I felt better and was achieving results that were not bottom-lower mid ranges in FT4 and FT3. When I was on NDT, the results averaged much higher:

Averages while taking NDT 2015-2021, 1.75 grains, one morning and one evening.

TSH 0.005 FT4 20.8 FT3 6.03 T3 percentage of range 79.3%

Average T4:T3 conversion = 3.498

The endos seem interested only in getting the TSH up. As many of you have explained, on combined therapy, the TSH is usually suppressed.

I would like to ask for, if the endos can't full-on agree to NDT, to have a low dose of NDT to raise the figures and avoid the terrible slumps I have between T3 doses. I have tried taking lower doses of T3 more frequently, but this just hasn't worked. When I go for my blood tests, even at the most recent one on Friday, I feel very poorly without my morning T3, get shaky, light-headed, sluggish, and that is with FT3 showing at 4.8. I can see from the link provided by tattybogle and diogenes that NDT converts more slowly in the body, and I suspect this is why I didn't have the huge dips when I was on NDT which was contained similar levels of T3 and T4 as my NDT grains (see my other post and reply by tattybogle on this).

Finally, and I apologise, what are the MHRA guidelines? I can see they do everything in their power to get endos and GPs NOT to prescribe combo therapy, BUT, the title at the top of the document I have seems to conflate T3/liothyronine AND NDT, as if they are the same thing. So I am not sure why endos are now more comfortable prescribing synthetic combo thyroxine/T3 but would refuse NDT.

ANY help and advice welcome. And thank you so much for those who responded last week - all of your responses are written down in my 'what to say to the endo' document!

[tattybogle]

in most areas (CCG's , now called ICB's ) ,

NDT is 'not supported' for NHS prescribing ... meaning the NHS won't pay for it. (some NHS Endo 's prescribe it privately)

In some areas there are a few patients ( you can probably count them on the fingers of one hand) who do still get their NDT on the NHS - usually people who have been on it for years.

All areas have slightly different rules re. what prescribing is allowed/ funded/ under what circumstances for T3 and NDT , but eg. this is the situation in my area :

T3 for new patients can now be allowed if initiated by an NHS Endo (following a review last year):

lancsmmg.nhs.uk/medicines-l... Recommendation

LSCMMG Recommendation: Amber level 0 (Amber medicines Amber 0

Suitable for prescribing in primary care following recommendation or initiation by a specialist. Little or no specific monitoring required. Patient may need a regular review, but this would not exceed that required for other medicines routinely prescribed in primary care.Brief prescribing document or information sheet may be required. Primary care prescribers must be familiar with the drug to take on prescribing responsibility or must get the required information. When recommending or handing over care, specialists should ask primary care prescribers to take over prescribing responsibility, and should give enough information about the indication, dose, monitoring requirements, use outside product licence and any necessary dose adjustments to allow them to confidently prescribe).

Reason for decision: Suitable for GP prescribing following recommendation/initiation by specialist

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

But NDT is not :

lancsmmg.nhs.uk/medicines-l... thyroid-extracts-unlicensed-liothyronine-and-thyroid-extract-products/

Background : The prescribing of unlicensed liothyronine and thyroid extract products is not supported

LSCMMG Recommendation: Black (Black medicines NOT recommended for use by the NHS in Lancashire. Includes medicines that NICE has not recommended for use and terminated technology appraisals, unless there is a local need. This category includes medicines for which there is insufficient evidence of their effectiveness.)

Reason for decision: Not recommended for prescribing on the NHS in Lancashire & South Cumbria

healthunlocked.com/thyroidu.... heads-up-for-patients-in-lancashire-and-south-cumbria-wanting-a-t3-trail-liothyronine-for-new-patients-now-allowed-by-lscmmg-review.

[Reefseeker in reply to tattybogle]

Thank you, that is really helpful. I've done a dig around on the Kingston NHS Hospital Trust website but can't find any reference to NDT etc, so I assume they adhere to the usual NHS guidance. As I just mentioned to pennyannie below, I've understood now that NDT on the NHS is not going to happen. I will approach the endo asking if they would supervise me introducing a low dose NDT alongside their synthetic combo so that I don't get the big slumps and to get my numbers into the top quartile of the ranges. I don't know if I'm the first or if I'm one of many that has asked for this at Kingston, but hey ho, got to give it a go!

[helvella Administrator in reply to Reefseeker]

Natural Desiccated Thyroid is very much not the mainstream medical term.

They often refer to "Desiccated Thyroid Extract" - DTE.

You most likely still won't find it!

Try searching on Open Prescribing:

openprescribing.net/

[Reefseeker in reply to helvella]

Thank you so much helvella, I'll get right on it All the best, Angela

[Reefseeker in reply to helvella]

Well, you're right, I couldn't find anything! Although on the Open Prescribing website, when I did a search with the term 'Armour', a few trusts came up that are prescribing, although the stuff at the bottom of the chart asked me if I would like to remove these 'outliers'!

[helvella Administrator in reply to Reefseeker]

Pretty rare, isn't it.

[pennyannie in reply to helvella]

If you go into openprescribing.net - you need to enter Armour as the drug :

[Reefseeker in reply to pennyannie]

Thanks, yes, I just worked that out... ahem... and I suppose on the bright side, some trusts are prescribing it, even if they are classed as outliers 😀

[pennyannie in reply to Reefseeker]

Yes, this ' outier ' was showing up on my surgery when I checked and when I questioned my surgery it was told it was only prescribed to those who had moved into the area and in Care Homes as this was their existing medication and one wouldn't dream of upsetting the elderly and frail and start switching their medication for no good reason. if well on it.

So I can't wait to move in - ( not really- and hope never ) but I'm 76 this year and self medicating and just curious to test this excuse / reality !!!

I just gave up and minded my own business at that point as all the upset and challenging of the system was exacerbating my symptoms - so I guess you could say - job done !!!

[Reefseeker in reply to pennyannie]

You know, I feel exactly the same. I've lost 6 days to researching, learning, thinking, curating etc. And for what? To be turned down! So I guess I too will admit defeat on this one

[tattybogle in reply to Reefseeker]

I think ? this is the 'joint formulary' for the area that includes Kingston Hospital , (but do your own check of that .as i'm up north and flaky on my geography south of erm ..manchester lol)

South West London Joint Medicines Formulary (SWLJMF)

Searching for Liothyronine leads you here,

swljointmedicinesformulary....

see liothyronine oral tablets: "....SW London CCGs do not support the prescribing of unlicensed thyroid extracts (e.g. Armour® Thyroid, ERFA thyroid)"

(note ~ it says Liothyronine is ONLY to be prescribed to existing patients .. which is probably why you are able to get your T3 on NHS .. you were on NDT already... other wise you probably wouldn't even get T3 on NHS in that area.

swlimo.southwestlondon.icb....

[Reefseeker in reply to tattybogle]

Thank you so much, you are A LOT better than me at tracking down all of this. Yes, it is the south west London one... took me a while to work that one out as I was looking up Kingston Hospital NHS Trust. You must be right, the DTE/NDT all those years must have got me through the door for T3. It also explains why I get such odd advice from most of the endos there, well, to them it makes perfect sense.... I'll check out those links

[tattybogle in reply to Reefseeker]

the magic search terms for digging out the nitty gritty on which area can prescribe what , seems to be 'formulary ' or 'joint formulary' .

[Reefseeker in reply to tattybogle]

Aaaand, 4 hours before my appointment, they have just phoned to cancel for the fifth time; next appointment some time in May. I last had an appointment June 2022. I give up....

[Reefseeker in reply to tattybogle]

Right, I've given it a good read. It makes me so sad that combined therapy has almost a hate campaign against it. For me, life without it is slumped on a sofa or in bed. It makes no sense.

I also note that combining private desiccated thyroid with NHS liothyronine isn't allowed...

"In accordance with NHS guidance on ‘Defining the Boundaries between NHS and Private Healthcare’, if you are currently obtaining supplies of liothyronine or desiccated thyroid via a private prescription, or you are self-funding, then you are not eligible to obtain liothyronine by a NHS prescription unless you meet the criteria set out in this position statement.

"If you have been seen by a private doctor, you can be referred to a private service to obtain a private prescription for your treatment."

It's all so depressing

[pennyannie]

Hello there again Angela ;

Just a point of reference :

This T3/T4 ratio guide you quote only applies when taking T4 monotherapy.

Good luck with the appointment and if nothing is forthcoming you have my PM from some 6 months ago.

[Reefseeker in reply to pennyannie]

Hey there Pennyannie and yes indeed, I was just checking out your recommendations yesterday ready for the next course of action! Thanks for the information about the conversion, I wondered if direct dosing would nullify that. I have one 'pure' stat from 3 months in 2021 when the GP had me on thyroxine only prior to seeing the endo, and that conversion ration was 2.697. After all the amazing support on this forum this past .... well, long time... I've resigned myself to the fact that a private prescription for NDT is the only way. I'll ask the endo if they would allow me to introduce privately-sourced NDT at a low dose alongside the synthetics, under their supervision, to avoid the slumps when the T3 dose wears off and to get my numbers up. If you don't ask and all.... Thank you again for your help, I've had a good look around that pharmacy so after Thursday it's just a matter of getting on with it, one way or another All the best, Angela

[pennyannie in reply to Reefseeker]

I can't really see the point of introducing NDT alongside synthetic T3T4 :

However you can always do it for yourself as obtaining NDT on the NHS is now very rare.

Obviously you can get all treatments options prescribed if you go private or of course do it for yourself. do it yourself.

[Reefseeker in reply to pennyannie]

Well, it looks like the guidelines don't permit combining privately acquired NDT with liothyronine from the NHS, so it's a blocked route. I got the idea from someone suggesting it on here to try a low dose route in addition to the synthetics. Also the person who did my blood tests is a nurse who has tried every which way to get her hypothyroidism properly treated and is now under Dr Yong, who is on the Thyroid UK consultants list. Dr Yong has this nurse on T4 and NDT, plus other hormones. I'm going to see if I can get onto her waiting list.

The only reason I'm trying to do it the NHS way is I have been very upset at the bullying by my GP, especially withholding my medical exemption certificate, so I'm trying to say on-side. But it just may not be possible.

[pennyannie in reply to Reefseeker]

Well yes some people do fine tune their NDT and add either a little T3 or a little T4 to their dose when very close to their ' sweet spot ' :

I'm not sure I've found my sweet spot but just know it's the best treatment option for me. I 'm with Graves post RAI thyroid ablation in 2005.

There is a unique ratio of T3 and T4 in NDT that suits very many thousands of people as it stands - most NDT brands contain 9mcg T3 + 38 mcg T4 per 1 grain tablet - so roughly speaking, we are back at that ratio again of 1/4 - T3/T4.

I too felt bullied and in all honesty what sort of a doctor is it that does this to patients who are clearly unwell ?

[pennyannie in reply to Reefseeker]

Think of making some scones :

You can use plain flour T4 + baking powder T3 or self raising flour NDT :

What makes the scone rise and gives a balanced light texture with none left over ?

[Tythrop in reply to pennyannie]

Like the metaphor

[Reefseeker in reply to pennyannie]

I love that metaphor, it's going on the list!