NHS reducing Levo dosage

[SilverSavvy]

Can anyone tell me please why so many people I know with hypothyroidism and who have been on Levo (usually around a dose of 150mg) for many years have been summarily reduced in the past year or so to a lesser dose by their GP's? Some of them have gone down by quite a lot and are suffering pretty badly with a resurgence of symptoms they haven't had for ages. They haven't really been offered any explanation and it feels pretty random. Is it a cost saving issue?

[SlowDragon Administrator]

it’s an (incorrect) obsession by GP’s to bring TSH “within range” …..lInstead of treating the patient

Plus cost cutting of only testing TSH…..whereas ALL thyroid patients should have TSH, Ft4 and Ft3 plus vitamin D, folate, ferritin and B12 tested at least annually

Low vitamin levels tend to lower TSH

Being under medicated for thyroid tends to result in low vitamin levels

[SilverSavvy in reply to SlowDragon]

Yes Slow Dragon , I'm still titrating up and down to find the right dose for me but in nearly two years of trying and five or six medication reviews, I've had only one Ft3 test. Mainly they just do TSH which, it's clear to see in my case, does not really inform anyone of the true situation as I am still symptomatic at lower levels despite being in range. But I keep hearing about friends who have simply been significantly reduced with no explanation and are feeling rough. It's so sad to see them suffering when they have no need - and no backup for the fight. I point them here to give them ammunition to address it with 'Computer says No' NHS docs )

[SlowDragon Administrator in reply to SilverSavvy]

You will see thousands of members on here test privately via Medichecks or Blue horizon or Monitor My Health (NHS) private testing service in order to make progress

Many many people on levothyroxine, when adequately treated will have TSH below range

Most important results are always Ft3, followed by Ft4

If dose is inappropriately reduced, vitamin levels frequently drop

Do you always get same brand levothyroxine at each prescription

How much levothyroxine are you currently taking

Always test thyroid levels early morning and last dose levothyroxine 24 hours before test

What are your most recent results

NHS only tests and treats vitamin deficiencies

We need to self supplement to maintain OPTIMAL vitamin levels

[helvella Administrator]

To an extent, number of tablets (e.g. 2 as in 100 + 25 or 100 +50, 3 in 100 + 50 + 25) is as important as dose.

100, 50 and 25 tablets are near enough the exact same price as each other. (12.5 and 75 are more expensive.)

See prices here:

drugtariff.nhsbsa.nhs.uk/#/...

Hence, there is little possible saving from reducing a dose unless it drops from 3 to 2 tablets (or 2 to 1).

[SilverSavvy in reply to helvella]

That's fascinating Helvella, thank you for that. I will certainly know which cheaper dosages to request now. No wonder my doctors did not wish me to stay on one of the more expensive ones! Yet with the correct prescription they can pretty much halve the cost for exactly the same actual dose. Brilliant. I will use this.

But that is just one perfect example of where correct prescribing can save the NHS so much money. Startling.

[Kacey12 in reply to helvella]

Very interesting! My GP told me 12.5 didn't exist (?!) and tried to reduce me from 75mcg to 50 which I refused to do.

[SilverSavvy in reply to Kacey12]

75 isn't exactly a high dose anyhow...but I don't know that 12.5mcg exists either - cutting the 25's in half with a pill cutter worked for me.

[Kacey12 in reply to SilverSavvy]

75 isn't exactly a high dose anyhow

Exactly, SilverSavvy - it's not a high dose, which is why I didn't want it unnecessarily reduced by 33% to 50. As Tattybogle has since replied, there is a 12.5 tablet (which the GP denied even though it's on the NHS website!), but it's Teva only which some people are allergic to. I am on Teva 75mcg anyway, so the GP couldn't have used that reason - it must have been cost. But then why couldn't she have suggested alternating days of 50 and 75 which I've done before? Total numpty

[SilverSavvy in reply to Kacey12]

I'm hearing this a lot from friends/relatives. Random reductions based I guess on GP guidance from above viz osteoporosis etc. Or money. Sometimes without people even getting to see their GP but hearing about it from advanced nursing practitioners or whatever on the phone.

I personally think I'd rather go for a steady dose of same every day no matter what it was. So infuriating that some doctors think it's okay to play with people's lives like this. You stick up for what you need!

[tattybogle in reply to Kacey12]

12.5mcg levo tablets do exist ... only one brand though ~ TEVA ~ which some people don't get on with.

NHS can prescribe them ,they are on their list, but they are stupidly expensive , so they don't often . ( and i think there was a supply issue earlier this year ?)

all other doses of levo cost (more or less) £1 for a packet of 28 , but 12.5mcg cost about £13 for a packet of 28 .

GP 's prescribe smaller dose adjustments than 25mcg by using their brains (those of them that have this facility)

eg my dose is 112.5mcg ....... prescribed as ' 1 x 100mcg + half a 25mcg' daily.

'Alternate daily dosing' is a common way of prescribing that avoids cutting tablets .. eg 112.5mcg = '100mcg / 125mcg on alternate days '

even finer adjustment can be made by eg 5 days 100mcg/ 2 days 125mcg.

Some GP's seem to think they can only adjust by 25mcg at a time due to tablet size , but you have to wonder if those ones have a maths 'O' level.

[SilverSavvy in reply to tattybogle]

Oh Tatty...you do make me laugh..'those of them that have this facility'. Priceless.

My own current challenge is trying to figure out how I can cut a tiny 20mcg Lio tablet into 4. I can probably do into two but to get it down to the 5mcg recommended as a starter dose by SSusie I'm going to need tweezers and a microscope

[tattybogle]

no .. not a cost saving .. reduced dose can actually increase cost depending on size of tablets prescribed.. ie 100mcg /day = 1 packet of 100mcg tablets costing about £1

reduction to 75mcg / day is often prescribed as (1 x 50mcg) +(1 x 25mcg) .. 2 packets of tablets costing about £2

Dose reductions are very common , there's nothing sinister going on ... however that doesn't mean all those dose reductions were necessary or beneficial to the patients involved , some nay have been a good idea , but some not ...most GP's have very little education on thyroid and very often put the test results before how the patient actually feels ,, but that's a whole different subject .

Reductions are more common than increases simply because GP's are much more frightened of overmedicating patients than under medicating them ... this is often a mistake .. if they assume overmedication simply from looking at the TSH result without also considering th eFT4 / fT3 results and the patients symptoms response .. if they were better educated re. thyroid hormones they would know the TSH test has limitations and is not the best tool for assesing correct dose . It was designed as a diagnostic test , for which it is usually pretty good .... but it is often NOT the best way to asses correct dose once diagnosed

[SilverSavvy in reply to tattybogle]

That's interesting Tattyb...almost everyone of the people I have spoken to about this have only had TSH testing prior to the reductions being imposed. Many haven't even seen a doctor! I suppose the unwillingness to do the REAL diagnostic blood tests IS about money though.

How awful that so many innocent people are suffering serious repercussions to their health and wellbeing because the right tests are not being carried out And that's those who have actually BEEN diagnosed. It took doctors almost 20 years to take me seriously enough to test my T4 against TSH to get a diagnosis of hypothyroidism when I was absolutely on the floor and with vitamins in my boots. It makes me sad and angry for all the others fighting that same battle and I'm wondering why the matter of poor thyroid care in this country isn't more radically flagged up in the media.

Perhaps we are all too tired!!!

I am so glad this group is available for info and support to those in need.

[Sparklingsunshine in reply to SilverSavvy]

I only found out I'd gone full hypo 2.5 years ago. I've been convinced my thyroid has been sub par for decades. I certainly had a lot of symptoms, but as GP's only test TSH I'd always been fobbed off. I have Fibromyalgia and have been amazed at the sheer number of symptoms doctors ascribe to having that condition.

My TSH was frequently over 4 or even 5 but that's below the magical threshold of 10 that opens the portal to NHS treatment. It wasn't until bloods I had taken to investigate unexplained breathlessness showed I had sub clinical hypothyroid but crucially a below range FT4. This was repeated 3 months later and things had gotten worse by then.

If my FT4 and also my FT3 hadn't been tested at that time, I don't doubt I'd still be waiting for thyroid treatment and feeling crap.

[SilverSavvy in reply to Sparklingsunshine]

That is such a sad story Sparklingsunshine. I am so sorry to had to suffer for so long

[Sparklingsunshine in reply to SilverSavvy]

Thank you. It cou.d be worse, I might still be undiagnosed. Evey cloud etc.

[tattybogle in reply to SilverSavvy]

'all too tired' does have a heck of a lot to do with it ,yes.... But it's not just about 'lack of making a noise that there is a problem here' ....there is plenty of noise from patients , and plenty of well organised pressure from patient groups ,even going as high as getting members of the House of Lords to request the CCG's who are still blocking T3 prescription contrary to NICE guidelines to 'pull their finger out and get on with it' .....

There is a much bigger problem, that is much harder to shift ..... the pushback from the Status Quo of Endocrinology which says 'there is NO problem ~ thyroid diagnosis and treatment is very simple and has already been completely solved with Levothyroxine , unfortunately a very loud and stroppy minority of well educated /over priviledged thyroid patients try to blame everything else that they 'think' is wrong with them on their already treated thyroid problem .'

[tattybogle in reply to tattybogle]

yes .... 'not testing fT4 if TSH is an range' is a policy purely about money saving (by restricting GP access to what are seen as 'unnecessary' tests) ... false economy in many cases .... patients with inappropriately lowered doses will cost much more money due to repeated GP appointments/ further referrals , because 'everything hurts , i don't know what's wrong but i feel awful'

[SilverSavvy in reply to tattybogle]

Not to mention a greater predisposition to diverticular disease, diabetes, heart attack and stroke if a person is left too long for diagnosis.... I dread to think what all those must be costing the NHS for the sake of a few quid on Levo or appropriate meds. Such short termism. Gah!

[Anthea55]

One explanation put forward by GPs is that a suppressed TSH will lead to osteoporosis, so they try to keep TSH within whatever range someone has guessed at.

Here's a link to the Thyroid UK website, to the page about the '7 Myths of Hypothyroidism'.

thyroiduk.org/further-readi...

Worth a read, but I'm afraid that your doctor won't believe you.

Good luck!

[Aurealis]

I don’t believe it has anything to do with cost. It has everything to do with competence, GPs being able to ‘cover their backs’ and prove that they’re trying to keep patient test results ‘in range’: that is self-interest, not treating patients so that they recover full health; not using professional judgement and discretion; and not giving value to the public for the massively subsidised expensive medical education they’ve had. It really isn’t good enough. Mind, there are a few diamonds out there if you can find one…

[1tuppence]

Does anyone know of someone like Davina who could raise thyroid as being just as important as menopause?