An interesting if 'biased' NHS paper comparing ... - Thyroid UK

Thyroid UK

137,611 members161,365 posts

An interesting if 'biased' NHS paper comparing NDT and Levo

katyfow profile image
22 Replies

Hi All,

The link below takes you to an interesting paper I've just found online (apologies if its been posted before).

It's an NHS Q&A paper titled 'What evidence is there to support the use of Armour Thyroid or other dessicated thyroid products?' The bias in the paper towards Levo is incredible, and helps to explain why we often find it so difficult to have a conversation with NHS doctors about the possibility of using NDT.

Enjoy :)

(When you click the link it asks you to download the paper)

medicinesresources.nhs.uk/G...

Written by
katyfow profile image
katyfow
To view profiles and participate in discussions please or .
Read more about...
22 Replies

Thanks for this katyfow.......I am extremely interested and will come back later on today on it as I am on Armour Thyroid.I have printed it out and will study it. I think it best that I refrain from commenting until then..............at the moment the weeds in the garden need to be tackled!!!..........PS when I read it I think my blood pressure went up!!

shaws profile image
shawsAdministrator in reply to

Marfit,

I think a few others' blood pressure will rise as well. Particularly those who've been unwell for years on levo. I think doctors forget we are flesh and blood not machines that need to be well oiled! Although maybe if the doctors were 'well oiled' they'd be happier that their patients had stopped complaining and were happy to prescribe 'other than levo'. :)

As a matter of fact the failure of 'NDT' is that they are probably prescribed h

NatChap profile image
NatChap

So basically patients felt better on NDT but instead of accepting that, they are implying that that is purely a psychological perception due to patients not being happy with levo. So when we switch to NDT and feel better it is all in our imagination as the blood tests when on levo said we were well on that too???!!! The bottom line is that regardless of what is proven to work better from a patients point of view is completely irrelevant because while ever the TSH says we are normal they will continue to prescribe levo. Oooh it makes my blood boil!!!!

katyfow profile image
katyfow in reply to NatChap

Couldn't agree more - the blatant bias is incredible!

The paper doesn't offer any evidence of Levo being a superior treatment, and tries to disregard any evidence of NDT relieving symptoms as being subjective - I'll take subjective symptom relief any day!

And because weight loss occurred (which is an objective measurable outcome) it also seems as though there's an implication that 'they only prefer it because they lost weight' - which was what my GP said when I spoke to him a couple of weeks ago about doing a trial with NDT because I was frustrated about still being symptomatic on levo - one of which was not being able to lose any weight - he told me he didn't think it was a good idea if "you're just concerned about your body image" - I would have screamed if I'd expected any better.

The question is why would a patient prefer one medication over another unless it made them feel better? - my blood is boiling too if it's any consolation!!

OT: but what a badly typed document! I think the NHS need to invest in MS Word training, or do what everyone else does and disguise their shortcomings by using PDF.

And "all the patients" had low (but in range) T3. And no one wondered why they were dissatisfied with levo?

humanbean profile image
humanbean

I'm having difficulty opening the file. It defaults to opening in Notepad, but is virtually unreadable.

What should I be reading it with?

katyfow profile image
katyfow in reply to humanbean

I read it in preview - do you have that?

humanbean profile image
humanbean in reply to katyfow

It's okay - I discovered my problem.

I have the option of saving the file or opening the file with a program.

I was trying to open it with a program, and every program I tried produced an unreadable mess.

But saving it first, then just opening it by double-clicking on it, works fine. I don't know why directly opening it with Libre Office Writer wouldn't work in the first place. But saving it first then opening it with exactly the same program works okay.

humanbean profile image
humanbean

Quote from the paper :

"Another retrospective practice-based review found that switching to AT improved symptoms in 154 (euthyroid) patients who reported persistent symptoms despite taking levothyroxine. However, the patients studied were already dissatisfied with their levothyroxine which would have led to selection bias."

Surely the whole idea of trialling a different treatment is that it might fix the problems patients have with the standard treatment. Are they suggesting that Armour should have been trialled only on people who are happy with levo? What is the point of that, for goodness sake, what a complete waste of time!

katyfow profile image
katyfow

Exactly, and what reason would they have for preferring Armour if it didn't improve their symptoms?!

Yet despite that, this paper has been published and is (from a lot of people's experience with GP's and endo's) used as a justification for continuing to use Levo only! Couldn't have been more biased if it was written by a levo manufacturer!

diogenes profile image
diogenesRemembering

The problem with much of this document is that it is based on studies which were ill-designed. If say there are on average 10% of people who cannot tolerate T4 only in a total studied population, and 90% who can, then you would not expect to find any meaningful analysis to distinguish that minority from the overwhelming larger subgroup in a randomly mixed panel, unless you a) did a huge prospective trial with many more patients and b) found some proper way to initially discover who the minority were before beginning the trial. There may be a way forward using the FT4/FT3 ratio in patients on T4 alone. Assuming that poorer converters will have a high ratio and better to good converters a lower one on the same T4 dose, patients could be pre-separated and then and only then could the minority be properly studied in comparison with the majority. There was some evidence for this in the study where those who didn't get on well with T4 liked the T3 combo better. However bias was introduced insofar as such patients might expect to feel better on the combo and accordingly a placebo effect couldn't be ruled out. However there are patients who actually don't have an optimal QoL on T4 and don't know it (they accept their state of health). So looking at these based on their FT4/FT3 ratio would be the best non biased way forward, as there shouldn't be much of a placebo effect. Finally the criticism that Armour Thyroid doesn't have the right combination of T4 and T3 is rather silly, when you think that T4 alone is as about non physiological as you could get. The false assumption here is that for everyone, the body will always take care of adequate conversion to T3 from T4, where we now know this for 10% of patients at least is not the case when they have no thyroid left. So it's a bit rich to say in effect "my non physiological treatment is better than yours". In any event the "wrong" relation in AT is irrelevant since the body won't convert as much T4 to T3 if it sees adequate T3 in the preparation. This argument is simply the same as that advocating T4, but in reverse.

katyfow profile image
katyfow

Hi eljii thanks for posting these links, your 2nd link leads to a log in page - is there a publicly accessible version?

humanbean profile image
humanbean in reply to katyfow

It works okay for me.

Go to this page : medscape.com/today

and do a search for "To T3 or Not: What's the Story on Combo Therapy in Hypothyroidism?"

The search box is top right on my browser.

SmallBlueThing profile image
SmallBlueThing in reply to humanbean

I got the log-in page when searching at Medscape, but using the same "What's the story..." search in Google provided a link which required no log-in. I've experienced the same for other sites, too.

humanbean profile image
humanbean in reply to SmallBlueThing

Yes, me too.

katyfow profile image
katyfow in reply to humanbean

Hi,

Got it thanks - it reads as a much more reasonable version of the NHS paper I linked to - i.e. there is no-one-size-fits-all.

Thank you for posting eljii and humanbean.

Me again......back from the weeding ! .......OK.......If Levo T4 was right for all cases of hypothyroidism then why would there be thousands of patients having to seek help and support here on this forum ? No one would be wanting to spend time and money searching for sources of T3 and NDT if LevoT4 was all that was needed would they? I would have been more than happy to get on with my life instead of making frequent visits to surgery whilst being left on 50mcgs Levo for 10 years, being told there was nothing wrong with me. In the paragraph "Switching from Desiccated Thyroid to Levothyroxine" they refer to patients being given between150- 200 mcgs Levo daily. Why did my GP not do this in the beginning? I'm asking myself "If I'd had the benefit of a higher amount of T4,would there be a chance I wouldn't have needed T3 ? I can never get those 10 years back to find out!! Thankfully 12 years on I found an Endo who believed in FT3 testing,prescribed T3 and helped to improve my health. Last week at my Endo's thyroid clinic I asked if it is possible to return to taking Levo T4 only,after adding T3.......thinking about the continual threat of T3 not being prescribed and also the concern of having to continually send abroad for unlicensed Armour or other NDT. I was told they would have to prescribe sufficient T4 Levo to relieve all symptoms.!!!!!..............What can I say?

I sincerely hope that at some stage medical students spend more time being taught the importance of an optimally working thyroid gland whilst still at medical school. When creating these studies on thyroid medication do they seek volunteers from the members of Thyroid UK to take part ?

Glynisrose profile image
Glynisrose

Read 'Does levothyroxine suit everyone' by 3 eminent doctors.

humanbean profile image
humanbean in reply to Glynisrose

Have you got a link or some suggestions as to where we could find it?

Glynisrose profile image
Glynisrose in reply to humanbean

Sorry, did have but lost it now. One of the authors was Parijat De but its been many years since I read it!

TupennyRush profile image
TupennyRush

Ok - it's very biased but there were two comments (in amongst the anti NDT rant) that I thought gave 2 glimmers of hope:

Firstly the statement that data for people with the DI gene defects had not been correlated which seems to indicate that they are now accepting that those of us that have this need T3. While this doesn't solve the problem for everyone it does imply that they may be moving away from the 'one size fits all' approach of levo only until you die....

Secondly the comment that levo dose levels are being solely judged on the lab results but that they should take into account how the patient actually feels to titrate the dose.... Wow, they are talking about listening to us!

So, while it was more bad than good (like the curate's egg), there does seem to be some light dawning around some aspects of care. One thing I found really disappointing given that it is purportedly a scientific paper was that given the acknowledged results there was no proposal/recommendation for further double blind testing of NDT vs levothyroxine with a sufficiently large sample size to prove one way or the other whether there is a benefit; obviously correlated with whether participants have the DI02 gene variant......

katyfow profile image
katyfow

thyroiduk.org.uk/tuk/resear...

Here's another two articles (at the top of the page in the link) that provide a glimmer of hope - maybe things are slowly being researched further - fingers crossed! The 2nd article down published in the Lancet last Sept is encouraging.

You may also like...

Conclusion of paper comparing response to FT4, FT4/FT3 combination and NDT

Though I sent this paper to TUK to archive, posters may not have seen its contents. So I've recorded

A couple of new papers of interest

with LT4 use. Both these papers are behind paywalls, so I'm sending them to TUK. THYROID...

NDT should be prescribed on the NHS.

Petition to request NDT to be licenced and prescribe by the NHS https://you.38degrees.org.uk/petitio

Interesting paper on alternating hyper- and hypo-thyroidism

substantial. The paper mentions that 10-20% of patients with autoimmune thyroiditis have TSH...

Interesting paper on vitamin D

hormone) played. Would be interested to hear what you think.