Any CCGs as well as Devon limiting the dose of ... - Thyroid UK

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Any CCGs as well as Devon limiting the dose of T3 a dr can prescribe?

TaraJR
TaraJR

I know Devon CCG has decided a maximum dose of 10mcg T3 that a dr can prescribe, despite it saying up to 60mcg on the BNF, and despite a patient maybe needing more than 10mcg.

Does anyone know of any other CCGs or Health Boards who have put a limit on how much T3 a dr can prescribe?

38 Replies
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shaws
shawsAdministrator

If they have, whoever has made the condition must have a failing thyroid gland themselves as it proves their brain isn't functioning at a normal level. It is complete nonsense they state.

They are also ignorant, in that T3 is the Active Thyroid Hormone needed in the millions of T3 receptor cells and brain and heart have the most. Some people cannot convert levo properly and several research teams have proven that a T4/T3 combination works for many. Many experience awful days in that they cannot function as a normal healthy person.

It is females that experience more problems with their thyroid gland than males but both have problems getting treated optimally.

Thousands do fine on levothyroxine alone, if prescribed sufficient to relieve their clinical symptoms.

This is the method that will give us the best results and may get an increase:-

Blood tests should always be at the very earliest appointment (I'd make an appointment weeks ahead). It is a fasting test (you can drink water) and allow a gap of 24 hours between last dose of thyroid hormones (levo or others) and the test and take afterwards.

Also ask for B12, Vit D, iron, ferritin and folate to be checked too.

Always get a print-out of results (with the ranges) and post if you have a query.

TaraJR
TaraJR in reply to shaws

I agree.

Devon CCG definitely limits the T3 dose to 10mcg.

devonccg.nhs.uk/?s=liothyro...

I'm researching if any other CCGs or Health Boards have liothyronine policies also limiting doses.

As if drs would agree to prescribing a fraction of the antibiotics or insulin that a patient needed...

MissGrace
MissGrace in reply to TaraJR

Bonkers. You couldn’t make this stuff up. We live in strange times... 🤸🏿‍♀️🥛

SlowDragon
SlowDragonAdministrator in reply to TaraJR

As price of T3 dropped from £258 to £121per 28 tablets .........could argue that for same money can now get 20mcg

Ah ... is that price drop quite recent SD?

😊

SlowDragon
SlowDragonAdministrator in reply to smilingjane

Been dropping steadily most months, but last month dropped £40 per pack ....hopefully might drop again in future months

nhsbsa.nhs.uk/pharmacies-gp...

Good news. how and why I wonder?

MikeM46
MikeM46 in reply to SlowDragon

Think I need help with this ... looked in Part V111a, showing the price list for 10/20 ... the 25mcg tablet is not mentioned there. Guess there must be another list for NHS Inductive prices ?

MikeM46
MikeM46 in reply to SlowDragon

Where do you get that price from SlowDragon?

I ask ‘cos I keep the BNF app fully updated & atm the lowest NHS indicative price & Drug tariff price are both recorded as £161.36

MikeM46
MikeM46 in reply to MikeM46

Oh ok, my bad ... I see you’ve posted the source ... surprised the BNF lags so much behind! That is good news!

Hashihouseman
Hashihouseman in reply to TaraJR

The Devon CCG liothyronine protocols are out of date doctrinaire bullshit, as can be seen from some of the challenges to to the assertions of the document discussed below. One of the more interesting aspects of this document, apart from the rabidly bigoted attitudes towards liothyronine which bleed out of the pages, is the commitment to equality and diversity described at the beginning of the document together with invitations to complain if anybody feels that they are negatively affected by this in terms of equality and diversity. Well, there is a substantive argument that refusing to replace physiological levels of T3 or putting patients to some kind of extreme clinical challenge is discriminatory in the context of equality and diversity protection (not to mention being plainly potentially psychologically abusive). The discrimination stems from a cost cutting and clinician ego motive which supported only by highly unspecific evidence from conveniently interpreted clinical trials. By that I mean that the basis for assessing whether a patient needs t3 replacement and the interoperability and equivalence of t4 and t3 replacements is founded on a non clinical motive utilising abstract and limited research and not on a clear and fair set of humane criteria for discovering an individual patients response and various set points. That said there begs another question of why a patient should be put to a highly personal clinical trial over their doses if they feel well after years of getting it settled when the perturbations of doing so are likely to cause significant if not severe disruption to well being and daily life. As it stands unsympathetic dogmatic clinicians can hide behind the brutal Devon liothyronine protocols and so it is the protocols and the CCG itself which should be directly challenged by complaint. Unfortunately the final resolution of disagreed complaint about this cannot be adjudicated by the health services ombudsman because their cop-out is that they only check to see that clinicians have followed clinical guidelines such as so called approved protocols! I am currently pursuing a case against a Devon NHS trust regarding their treatment of my hypothyroid and related issues and the ombudsman is clearly seeking to limit its powers of adjudication to almost totally unhelpful levels and I have yet to find out how to get some kind of judicial review on what amounts to specious clinical arse covering, sorry, clinical guidelines. While I do not have any experience or real understanding of why and when and how it is to have more than the thyroidal equivalent of T3 replaced (5-10 mcg) I would think that there would be fairly straightforward clinical evidence e.g. levothyroxine does not yield anywhere near euthyroid normal levels of free T3! So, isn’t it simply a matter of titrating varying amounts of T4 & T3 replacement to see what gives what? This definitely works for the physiological thyroidal secretion range equivalents for me and I’m definitely a sub-optimal converter who only needs 7.5 - 10 mcg liothyronine. The evidence for this is clear in my TFT, symptoms and if I input my data into the SPINA-THYR model for assessment of conversion. That model is produced by more credible and authoritative academic and clinical brains than the fools who developed and signed off the Devon CCG liothyronine protocols. Incidentally and by way of example of the need for individualised assessment of bio-equivalence (which seems to change slightly according to various dose regimes i.e. it’s probably not linear) my personal liothyronine levothyroxine substitution algorithm indicates 2.5 mcg liothyronine is hot swappable for 37 mcg of levothyroxine based on an absorption constant for levothyroxine in my dosing regime of 60% (because I take 5 x 25 levothyroxine over 24 hrs my absorption is less than taking it all at 6am fasted but then that’s a totally stupid way of taking it ;) So the debate about equivalence is a highly person centred one because of all the genetic and life variables that affect things like absorption of replacement, peripheral conversion, transport from conjugated to free levels, residual thyroid gland activity, pituitary outputs and hypothalamus pituitary sensitivities and set points (which can also change) - to use so called clinical trial data from a bunch of random strangers in such a doctrinaire and sweeping fashion to determine clinical rules for individual patients in the real world should be challenged at every opportunity.

This is shocking. This nonesense is written by a phamacist and a 'Director of Transformation'. I don't know of any other CCGs that have adopted the same policy.

If I were affected by this I would complain to the local PALS first. Assuming they were unable to help I would make formal complaints to the General Pharmaceutical Council or the General Medical Council as appropriate. You could also lodge a complaint under the Equalities Act as hypothyroidism comes under this Act. I think it's important to fight back.

There are elementary errors in this document. For example, they suggest replacing 20 mcg liothyronine with 100 mcg levothyroxine. This 5:1 ratio may apply to T3 and T4 in the blood but when taken as tablets the equivalence is 3:1 due to liothyronine and levothyroxine having different absorption rates and elimination half lives. Clearly this pharmacist doesn't understand pharmacokinetics.

They also recommend prescibing 20 mcg liothyronine, dissolving the tablets and throwing away half or three quarters. This is far more expensive than prescribing 5 mcg tablets. There's no reason why 20 mcg tablets should not be split - other than the phamaceutical companies found another way to boost profits. The tablets were split for many decades until the price was put up.

The document recommends prescribing 56 tablets for 'two months' (assume 56 days). This does not work if 5 mcg is taken twice daily. They can't cope with infant school arithmetic.

There are no recommendations that the daily dose is limited to 10 mcg.

They also introduce a statement that combination therapy is contraindicated in pregnancy. There is no such contraindication! This is a blatant lie.

Unfortunately I do not live in this area, I would love to take these *** on. If you are affected you will probably have to source liothyronine privately. In which case it would help if anyone affected could kick up a fuss and exhaust every possible avenue. These people hate work, so the best defence is to engage them to the maximum in terms of time and expense. They will continue with these policies until they realise it is more expensive not to prescribe.

TaraJR
TaraJR in reply to jimh111

jimh111 I agree, with so much of what you say.. lots of things wrong with this policy. It's been in use now for maybe 18 months, and affecting some patients badly. Nationally, the joint patient groups are fighting this whole situation as much as we can. The cost issue and many drs' views on T3 are both hard to fight.

Thoroughbred
Thoroughbred in reply to TaraJR

Has anyone made a comparison to thyroid conditions and treatment in Sweden or Holland?

TaraJR
TaraJR in reply to jimh111

linda96 UrsaP Helsan

pennyannie
pennyannie in reply to TaraJR

lau99

lau99
lau99 in reply to pennyannie

Thank you for the ping, Penny. The more I find out about everything the worse I feel about everything...this is insanity..but I guess it might explain my endo's reasoning for only increasing my Levo up to 175mcg to see how close he can get my levels to normal if he's only allowed to give me max 10mcg T3 to help me out. I guess I'll have to wait until I see him next to find out.

pennyannie
pennyannie in reply to lau99

Hey there

Well, 10 T3 might just be enough anyway - as it's a guess estimate of what a thyroid produces - and since you have surgical scars these will help your chances of getting better treatment than those like me who had thyroid ablation and " look " medically undamaged !!!

I thought also you might like to virtually meet people in Devon who maybe better informed and on a Liothyronine grapevine, knowing who to and who not to be referred to within the area.

lau99
lau99 in reply to pennyannie

Ah I see...I won't panic too much for the moment, then. Thank you again for the mention, It will definitely be beneficial for me to speak to more people in this area who have been in my predicament. Really appreciate all of your help as always, Penny x

pennyannie
pennyannie in reply to lau99

I've a feeling the lady who posted has started up a Devon thyroid support splinter group - if she hasn't I apologise, but feel sure she'll be able to link you in to someone in this new group and if I 've got my wires crossed - I'll blame it on the Graves !!!

P.S. You are not alone in all this - the situation is galling - but there are others around you in similar situations and maybe able to support you further and with some local information.

MikeM46
MikeM46 in reply to jimh111

Don’t take this too seriously jimh111 but I forgive you for an error for you probably suffered from red mist rage reading through that protocol, becoming so shocked you didn’t quite grasp it fully ...

Oh yes they do limit to 10 mcg, they certainly do!

Quote ...

“The usual aim should be to re-establish the patient on combined treatment with a levothyroxine: liothyronine dose ratio of 10:1 or higher, with a maximum dose of 10micrograms daily liothyronine taken either once daily or in two divided doses.”

So you kind of missed a second lunatic point ... because the SPC contraindicts splitting the tablets (they do have to follow that I understand) they’ve come up with this imo crackpot method of dissolving the 20 mcg tablet, taking half of that and chucking the rest away ... yes, really!

Oh ... & don’t assume this is down to a pharmacist or Director of Transformation! I can assure you otherwise but am not able to explain in detail due to patient confidentiality.

What I can comment on is that the basis of the 10 mcg was at first justified as the physiologic dose level. That of course can be traced back to A Pilo et als research paper “finding” of a 14:1 ratio decades ago which was then taken up by Bunevicus (? Spelling) and translated into 10 mcg. Even worse, yes, even worse, as suspect as that is in itself, that research finding was about glandular output of “T3”. Takes no account of failure of either peripheral conversion to T3 from T4 glandular output or T4 meds input or in the case of a really small proportion of patients who simply cannot tolerate T4. A patient already on T3 monotherapy ... very likely on the range of 50-60mcg daily will be put through this process regardless. The implications are so awful I’d rather not comment further!

Well apart from the out of date comments about dose sizes licensed by the MHRA. Currently, both 5 & 10 mcg tablets are also licensed and have been for some while.

jimh111
jimh111 in reply to MikeM46

I didn't express myself clearly. When I wrote there are no recommendations that the daily dose is limited to 10 mcg I meant no recommendations from official bodies such as NICE or NHS England.

Ten mcg is a little over the amount secreted by the thyroid and so is physiologic in that sense but of course it doesn't compensate for deiodinase carried out by the thyroid.

I also challenge the assumption that all patients will get better on physiologic doses. If patients have RTH or subnormal TSH secretion they will need supraphysiological doses of T3. I describe this on my website ibshypo.com .

SlowDragon
SlowDragonAdministrator in reply to MikeM46

But just like when 20mcg tablets had only one licensed supplier....

5mcg and 10mcg tablets remain ludicrously expensive as there is currently only one license

£98 for 28 tablets 5mcg

£148 for 28 tablets 10mcg

jimh111
jimh111 in reply to SlowDragon

But cheaper than buying 20 mcg and throwing 15 mcg away as these idiots suggest.

SlowDragon
SlowDragonAdministrator in reply to jimh111

That’s assuming you chuck the whole 15mcg away twice a day ......and exactly where should this T3 water be disposed of...not down sink into water supply!

It’s clearly just a wheeze to try to extract more money from tax payers

NHS T3 costs as of this month Nov 2020

if taking 10mcg as 2 x 5mcg tablets

2 x 5mcg = £196 per 28 days

If cutting 10mcg tablet into 2 x 5mcg

1 x 10mcg = £148 per 28 days

If cutting 20mcg tablets in half and taking 10mcg per day.....often as 2 x 5mcg

1/2 20mcg tablet per day = £60.50 per 28 days

Obviously many/most patients on levothyroxine plus T3 seem to need 15mcg - 20mcg T3 per day

(often 25mcg per day if forced to self supply with non UK T3 from non prescription sources, as thousands of patients currently are)

20mcg on private prescription supplied from Germany....cost per month roughly £8 per month

So UK tax payers still being exploited and thousands of U.K. patients still denied the medication they need.

stupid and stupider... obviously O Level Maths is not a requirement to study Endocrinology.

MikeM46
MikeM46 in reply to jimh111

Me again ... very interested in your comments about T4:T3 tablet equivalence being 3:1. I would greatly appreciate getting hold of any references you could provide for that. Would be enormously helpful.

jimh111
jimh111 in reply to MikeM46

ncbi.nlm.nih.gov/pmc/articl...

MikeM46
MikeM46 in reply to jimh111

Many thanks ... will pass that on!

Hi TaraJR , I live in Devon and I'm affected by this. I was unfortunate enough to see one of the endocrinologists involved with this decision and needless to say they weren't very helpful and advised that I didn't have a thyroid problem, as for some people it's normal to have low TSH, low Free T4 and low Free T3, that maybe I was having a mid-life crisis and advised that I should stop taking all thyroid medication! So I now see a private endocrinologist who thinks it's likely that I have central hypothyroidism and he's prescribed T3 which has really helped but I have to pay for it privately. My GP refused to prescribe T3.

But when things are back to normal and I can see a GP face to face, I'm getting ready to start fighting again to try and get T3 prescribed on the NHS. It's made a big difference to me but I can't afford to keep paying for everything privately. But a max dose of 10mg a day isn't going to help, I'm currently on 25mg, so I'm very interested to see other CCG's that have a similar problem, if any?

sy28
sy28 in reply to ShonaGreen

I share similar experience of Devon, I was advised they couldn't explain my symptoms, ignored family history of autoimmune related illness, cousins with hypothyroidism and Hashimoto's, would not consider trial of T3 unless I reduced Levothyroxine or stopped it all together. Told I might even feel better for not taking T4. Ignored my own Hashimotos diagnosis, ignored 20 years Patient Record conclusive proof I have never been euthyroid. Wrote letter to GP suggesting my unexplained symptoms might be psychological in origin. Having tested positive for DIO2 heterozygous polymorphism and autoimmune Hashimoto's, I was dismissed from further clinic appointments with the explanation both are commonplace in the general population.

TaraJR
TaraJR in reply to sy28

If this is a fairly recent experience, would you be willing to report this to The Thyroid Trust please? They are collecting the reports on people being refused T3, as the joint thyroid patient groups are taking this information further. This would help very much but I'm really sorry to hear of your situation.

The link is here, and it is quite easy to complete:

thyroidtrust.org/liothyroni...

sy28
sy28 in reply to TaraJR

Hi TaraJR, it's been on my mind to report this to the Thyroid Trust - Lorraine notified me of a survey that was being compiled earlier in the year, it's no excuse, but I've been so affected by my experience, I thought I'd missed the boat. Will do. The situation with my Hashimoto's health is ongoing, but the endocrinologist has taken unprofessional measures in refusing to communicate with me, entrusting one of her Specialist Endocrine Nurses to write directly confirming 'there may no longer be a place for your forthcoming appointment' on the basis I would not comply with instructions and reduce T4. Under this care, the instruction was given without ever conducting full TFT blood tests to confirm current diagnosis. I wouldn't wish this dangerous conduct on anyone. Scrolling through Thyroid UK, Health Unlocked, last night, it appears I am not alone. The Exeter endocrinologist told me in no uncertain terms (my husband was present) 'even if I saw you privately, I wouldn't prescribe you T3' ,later clarifying, 'it's down to cost.' I never had full TFT blood tests, or blood tests, as suggested by Guidelines, for 'something else'. This person's own set of rules were singularly applied to me, cutting off any hope of a T3 trial if I didn't comply with her. It has been a soul destroying experience - nothing is solved, two years have elapsed, established Hashimoto's diagnosis ignored, 20-year, NHS Patient Record, evidence, ignored. I feel every professional rule has been broken. Thanks TaraJR for giving me the nudge I needed to relate this to The Thyroid Trust. I hope you're staying well.

TaraJR
TaraJR in reply to sy28

sy28 I'm very sorry to read your story. I know Devon thyroid patients have several issues to deal with.

YEs, there was a significant survey undertaken early this year about the prescribing of T3. But The Thyroid Trust are still collecting patient stories so that will be great of you can send yours. Unfortunately that means there are still a lot of people who are are still not getting the medication they need, but we fight on.

JaneChapple
JaneChapple in reply to sy28

Hi sy28

I've been turned down twice via Devon CCG. Also tried Pals and HW and got nowhere. Keep going round in circles. When having discussion with end this week was given the usual warning about suppressed TSH and osteoporosis etc. Told him I'd been like it since 2014 but his comment was we don't like it and I need to make you aware.

I have set up New Thyroid Group in Devon which feel free to join and anyone else here. 68 members already so you can guess what treatment or should I say non-existent treatment is like in Devon!

facebook.com/groups/1035323...

Sadly lots of horror stories already!

Thanks

Jane😣😎

Maybe thats why my endo has just prescribed 10, its my first script so I know no different. Cost saving again I expect!!!

jimh111
jimh111 in reply to twizzle303

10 mcg split into 5 mcg morning and evening doses is a good start. You may do well on it or may need more.

twizzle303
twizzle303 in reply to jimh111

Thank you I think anything will be better than none at all. Onward!!

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