I received a letter today from my GP in Scotland, stating that my prescription will change from Liothyronine tablets to Lyothyronine hard capsules as per “local policy”.
I have no idea about “local policy” and can only think that absorption issues might be the reason for the change.
Has anyone else received such a letter?
don't worry, your dose of medication will be the same. Someone has just invented the capsules, and the reason the GP is giving you them is because they are cheaper to produce and make it a lot cheaper for the surgery. The reason many GP's won't give people liothyronine is because it is so expensive to produce, so these capsules will be a life saver for many.
Unfortunately, unlike tablets, you won’t be able to split capsules if you need to. I take 30mcg T3 in the morning and 25mcg in the evening which means I have to split a 20mcg tablet in half and the split one of the halves into a quarter to get the desired dosage. I wouldn’t be able to do that with a capsule! 😡
Splitting is a problem but the capsules do come in 5, 10 and 20 microgram dosages. It is, therefore possible to prescribe to your current regimen - though would likely cost more!
Problem is, I hate taking capsules and I try to avoid taking them like the plague. Most of them are huge, are hard to swallow, inevitably get stuck and will take two litres of water to finally get down! And what doctor in their right mind is going to prescribe 3 different variations of one medicine to comply with my needs?
Taking capsules is not an issue. The Patient Information Leaflet clearly covers this issue:
If you have difficulty swallowing a whole capsule, empty the contents of a capsule into a minimum of 20 ml of water. Stir and drink the whole liquid to ensure you take the full dose. It is possible to do this with Liothyronine because this substance is soluble in water.
medicines.org.uk/emc/files/...
The capsules are very small - someone did recently express surprise in a reply here at quite how small they are.
And why wouldn't a doctor prescribe what you need? Obviously someone will argue cost, but in principle they should do so.
I agree, and in an ideal world that's precisely what should happen.... but this is the NHS and 'should' and 'would' are two entirely different principles... Just thankful that I can get T3 at all and happy that the brand Advanz is mentioned on my prescription.
Is that name on the first line of your prescription? We've had some palmed off with products other than that prescribed if the supplier/brand is mentioned later - not on the first line.
(This is the sort of thing no-one notices or mentions until one day it matters.)
My prescription reads “Liothyronine 20 microgram tablets (Advanz Pharma)” and that’s what I’ve always had.
That's good - sometimes members have the company name not on the first line. Which undermines the reimbursement to pharmacies and can cause issues.
Thank you for your response.I take 10mcg, reduced from 20mcg as Doctor was concerned about my cardiac status.The pharmacist had problems getting 10mcg tablets and I was prescribed 20mcg on alternative days. With the Hard Capsules, the prescription stays the same. The only switch is tablet to capsules
mauschen
The pharmacist had problems getting 10mcg tablets and I was prescribed 20mcg on alternative days.
You can't alternate T3 , it has a short half life of 24 hours so needs to be taken every day.
Thank you, I will look into this.I was wondering why I have symptoms of hypothyroidism when I have been stable for years. I was only switched to alternate days on my last prescription.
My skin is like the scales on a crocodile, I am weeping for no reason, have no energy and find it hard to lift my head from the pillow.
I assumed it was the frequent changes of brand as I was on Euthyroxine 75 mcg plus Henning 10mcg when I lived in Germany. I have been stable for 5 years.
mauschen
My skin is like the scales on a crocodile, I am weeping for no reason, have no energy and find it hard to lift my head from the pillow.
Apart from the weeping you've just described how I was when undermedicated, the skin on my legs was so dry that when I took my trousers off there was a cloud of skin!
I am the same. Body Lothian is not helping. I will now try oil in my bath.
My hair is falling out and what’s left is like straw.I definitely think changing my medication to alternative days is the problem.
I am normally a stable diabetic but my blood sugar is elevated as is my systolic BP, my body is not happy
T3 affects blood sugar levels
Likely this alternate day dosing was affecting sugar levels
drugs.com/cdi/liothyronine-...
If you have high blood sugar (diabetes), this medicine (liothyronine tablets) may sometimes raise blood sugar. Talk with your doctor about how to keep your blood sugar under control.
All the more reason to take T3 as 2 or 3 small 5mcg doses spread through the day
Many, many members take 3 x 5mcg T3 at approx 8 hour intervals.
that's ridiculous, that's not how t3 works, you need regular doses through the day. Order on Lloyds Pharmacy online, 5mcg capsules, take 5mcg in the morning and 5mcg early afternoon.
Just to make sure this doesn’t cause a problem if quoted, that would be 5 micrograms (not milligrams).
I have no control over ordering, my GP writes the prescription and the pharmacist dispense exactly what’s written
you can get them in 5mcg, so get a lot and take it through the day
T3 does not come in mg (milligrams), it comes in mcg (micrograms) .
There are 1,000 mcg in 1 mg, even people on high dose T3 only wouldn't take as much as 1mg - that would blow your head off goodness knows what 5mg would do!
Cazlooks liothyronine is not expensive to produce! Look how cheap it is abroad!!
Advanz/Mercury Pharma claimed it cost much more to meet MHRA's excessively high standards. Such that they had to charge a lot to pay for a new factory to conform (reliably) to MHRA rules.
Which other pharmaceutical companies expect existing customers to pay in advance for a new factory? Especially as the product is manufactured by a third-party contract manufacturer!.
(Aha! Is that why they called themselves Advanz? 
)
When I lived in Germany, I used to get Henning but in the U.K. I have had different U.K. manufacturers.The MHRA are very particular about the safety of medicines. However, they have less power post Brexit. The European medicine Agency was situated in the U.K. but post Brexit, moved to Holland. These are the big guns when it comes to Market Authorisation and licensing.
I always imagine you living in Hameln.
But we have Teva, and now Roma and (I think) SigmaPharm all UK licensed but made elsewhere.
Do you know from your medications list if these capsules are suitable for people with celiac disease, and contain any gluten ingredients? I have just posted below about not being able to tolerate any form of capsules, as I can't break them down, and they make me feel really ill
Teva if I remember correctly are in Israel. They were world leaders in the pharmaceutical industry.Teva are the most expensive costing £245 to the NHS but with drug Tarif £65 for 28 20mcg tablets
Teva is an Israeli company but their products are manufactured all over the place. Their size is largely due to numerous acquisitions.
The levothyroxine they supply in the UK comes from Croatia. The liothyronine they supply in the UK comes from Hungary.
unfortunately, the NHS got into a terrible contract with producers where they literally priced it off their own market; it's not the meds that cost, it's the contract which makes it expensive. Then, because it was expensive they stopped gp's from testing t3's which meant no one ever got prescribed them. Now you can get capsules instead of tablets and they have a better contract, so you can get them on the NHS - but only if you get an endo referral.
Is the content of the contract available online?
No.
I don't think we have a proper understanding of the relationship between the procurement sections of the NHS and the suppliers. Let alone contracts which would, I am sure, be "commercial confidential" - but the only relevant bit might well be the price.
It is the price, everything in the NHS is down to price! Person centred care is a paper exercise.Last Monday, I was supposed to have blood drawn to check my Thyroid function. However, an hour before my appointment was due, the receptionist phoned to cancel and rearrange for Friday past.
I explained that the blood test was needed because I was symptomatic of Thyroid dysfunction and that the dosage of my tablets required adjustment.
She said that the nursing assistant that takes the blood is off sick. I asked if a nurse or doctor could draw the blood and she said no.
This is my worry for the new GP charter where receptionists will triage patients.
This woman had no idea about Thyroid function or medication. She made a decision to move my urgent appointment made by a doctor, from Monday to Friday knowing full well that there would be no results before Tuesday. That makes it 2 weeks since I first phoned the Dr to say I was turning into a Gargoyle.
God help us all as the HMS NHS is sinking without a trace 🫣
Prior to Brexit I could get x 100 tablets of Sanofi ThyBon Henning 20mcg from Germany for £30 including postage privately. They are not expensive to produce. In the U.K. the exact same brand and amount is now £60 private prescription post Brexit.
McPammy
Thybon Henning is currently (at moment) similar price from specialist U.K. pharmacies….50-60p per tablet
Recently bought 100 tablets of Sanofi ThyBon Henning 20mcg for £60 including postage from U.K. pharmacy privately. It was quick and easy to place my order and arrived within 2 days with long expiry date.
ask to be referred to an endo, you can get an NHS prescription for this if you do
I also donget NHS T3 prescribed by my NHS Endo. I get Morningside 5mcg. I use a private only Endocrinologist as back up. I’m worried that my NHS T3 may one day be stopped. I think it’s worth paying £60 for a box of T3 privately for peace of mind and the private consultation is only £100. So total of £160 for a years peace of mind. I don’t mind paying.
Mauschen, I am in NHS Grampian and haven't had anything about capsules. I had a discussion with the GP surgery last week to confirm my dosing and I am sure the capsules would have been mentioned if it applied here.My lio dose is 5mg and 2.5mcg so I need to split. My surgery supply me with 2 x 5mcg daily tablets on an as needed basis to cover this.
Did your GP say why they split such a small dose?
Neither the GP nor the endos chose to split the dose. I split the dose to suit me. I spent 2 years trial and error working out the dosing regime that suits me at the moment. I have always split my levo dose and I added lio to that. I have been on as much as 20mcg lio but as things settled 7.5mcg keeps my ft3 at 72%.Some folks are better spreading small doses throughout the day. I have tried that but find I am as well with a morning and a night dose. A night dose is beneficial as the brain and gut work hard while we are sleeping. T3 peaks normally at around 4am so I wished to mimic that rhythm.
Currently NHS are paying £63 for 28 x 20mcg Liothyronine tablets
Roma 20mcg capsules are slightly cheaper at £55
But you can’t split them so if you currently split 20mcg tablets you would need to be prescribed correctly (and therefore much more expensively)
NHS prices for 28 Roma capsules are currently
£55 for 5 microgram,
£65 for 10 microgram;
£55 for 20 microgram.
healthunlocked.com/thyroidu...
So the message is if your prescription is changed to Roma and you don't want capsules - ensure that you tell the surgery that you dose several times a day and that this involves splitting tablets to get a 2.5mcg dose!
I read online that Roma capsules can be emptied into water to be taken.We will all be sitting like the drugs mafia on TV with our powder and the tool for smoothing the icing on a cake, dividing the powder up into sections 😎
Cutting my 20mcg tablets into tiny 1/4’s
known as “cutting the crack” in my house 😎
Our surgery has an in-house pharmacy and prescriptions are sent directly from the doctor's computer to theirs and they'll put everything up by the time you get out of the doctor's office. They're very good in that respect.
if you register with Lloyds Pharmacy online they offer a range and you can get some of each. For example I'm on 150 levothyroxine daily, and I have ticked a box for their 50mcg dose and 100mcg dose. They send you an email to tell you when your prescription is due, you click to say you still want it, they get the prescription and deliver it to your home. I always get exactly what I ask for. I've just gotten t3 on the NHS, previously I was getting it from USA, now I will get it in 5mcg doses so I can share it through the day.
It seems wrong to switch you without explaining more. They should at the very least have included something like "If you have any concerns, please contact ..." and a formal contact.
May I suggest you put in a Freedom of Information request (just an email saying it is an FOI request) to get hold of the "local policy"?
And post the relevant bits here so we can understand what is happening.
I have asked for a doctor to give me a call this afternoon to explain what’s happening. I have absorption issues and want to know where the capsules will be broken down.I will update later
So, my phone call with the doctor didn’t add much. This was the first time I had spoken with this particular GP and I liked her honesty.She tells me that the practice has a pharmacist who conducts medication reviews. If she thinks it would be cheaper for the NHS to prescribe in a certain way, that’s what happens. Local policy means cost cutting for the NHS.
I asked, why can’t I be prescribed 10mcg daily instead of 20mcg on alternative days? Cost!
Considering that I get 50% increase on alternative days, should I be reducing my 75 mcg Levothyroxine on those days? Don’t know!
Will I have peaks and troughs in my metabolism? Don’t know!
Considering that I have malabsorption syndrome, where in the GI tract will a capsule be broken down and will I be able to break it down and absorb the contents ? Don’t know?
Considering that my dose was reduced from 20mcg to 10 mcg 4 years ago because my resting heart rate was too high, what affect will alternative day dosing have? Don’t know!
20mcg tablets are only a few £ more expensive than capsules, could I try and half them?
At this, the GP made an appointment with the NHS consultant pharmacist for Monday
I didn’t ask about half life SeasideSusie because the Roma SPC states 1-2 days
You should know I’ve had a similar issue with my GP surgery and Pharmacist. Last week it all came to a head when I was supposed to have had an appointment with both. When the pharmacist failed to call I was told the GP was dealing with it. I said I still wanted to talk with her but she refused to talk with me. Eventually the GP called. I asked him point blank who has the authority over my medications a GP or the Pharmacist. Answer…. I do says the GP. He said she can advise me but I have the final say. So I asked why over the past few months he had been sending her emails which she had been ignoring and then wrote up for the Roma capsules which I can’t have. He said he didn’t know but he was sorting it out. I’ve now got the correct medication. Morale or the story, don’t let the GP and pharmacist pass the buck between them. The GP is the one who should be instructing the Pharmacist not the other way around. You need to convince the GP why you need tablets and not capsules and get them to write the correct prescription. Unfortunately like everything else with thyroid matters you have to fight fight fight and be very firm.
Thank you for sharing your experience. I also thought that the GP was passing the buck however, I respect her decision to allow the pharmacist, who has the academic expertise in pharmacology, to answer my questions. I already know the answers to my questions therefore, I am hoping that the discussion will highlight my concerns and force a person centred approach rather than an NHS cost cutting approach.
Thyroid disease and treatment is not well understood by those making the pertinent decisions; which Thyroid U.K. have highlighted. Therefore, in my opinion, it’s important to question any changes to our medications or treatments which differ from NICE guidelines under the guise of “local policy”. I think these cost cutting exercises by the NHS are a contentious issue which might be the tip of the iceberg and we could be opening a can of worms.
I agree with you , however the point I’m making is that the Pharmacist has no legal right to cost cut at the cost of a patients health. Just because one medication seemingly does the same thing as another and is cheaper, does not mean that it will suit everyone and can be pushed wholesale as a policy onto patients. It’s important that patients remind their Doctors why they are being prescribed particular medications and not be pushed by these Pharmacists into one size fits all. When our GPPharmacist joined our surgery and I had my first call with her to go through my meds. She had no idea what some of my conditions were, she was not aware of some of the issues with why I had to have certain medications prescribed by consultants and she had no idea about thyroid issues at all. Clearly had not read any notes. These people may know about medicines but they are not Doctors and have not had the training Doctors have had. It is the government that is pushing them into positions way above their pay grade and knowledge purely for financial and political reasons because they want to cut costs and find cheaper bums on seats due to shortages of real Doctors.
Sorry if this has turned into a bit of a rant but I personally refuse to deal with the local GP pharmacist who has caused me a lot of problems.
This happened a few years ago with one brand of an inhaler I use. Those of us who used this brand just got a letter telling us they were changing to a different brand but that the active ingredient was the same, and they did explain that the new brand was cheaper.
However, there were some of us, me included, who didn't get on with this new brand for whatever reason and upon speaking to a GP they agreed to change those of us affected and who had mentioned it back to the original brand and the brand name is stipulated on the prescription.
So if there is a problem just discuss with GP and you may be able to be put back on your original brand.
Thank you for your response.Since returning to the U.K. I have had every brand under the sun.
The NHS just issue the cheapest brand on the market. Although continuity of brand is in my opinion very important in Thyroid medications, it’s not going to happen any time soon in the U.K.
The issue I have is that the form has changed from tablet to capsules without offering an explanation. From reading the posts above, price difference does not appear to be significant? I have a telephone appointment with my GP surgery today to find out more.
I will update you all later.
Thanks
I didn’t ask about half life SeasideSusie because the Roma SPC states 1-2 days
So 24-48 hours, so half of the dose is gone in 24-48 hours, but 48 hours would be the maximum.
The SPC also states
Posology
Adults
Starting dose of 10 or 20 micrograms every 8 hours, increasing after one week, if necessary, to the usual recommended daily dose of 60 micrograms in two or three divided doses.
So I think that makes it quite clear that daily dosing is essential not alternate days.
You would be better opening the capsule, dissolving half in water to get your 10mcg, saving the rest until the next day, so that you can take a daily dose.
I see where you are coming from but that dosing regime is aimed at T3 only, my regime includes Levothyroxine T4
But it’s the same with NDT you do not skip a day just because it hasT4 in it! It is important to get the T3 every day no matter how much it is or if it is combined with T4.
And a working thyroid would be supplying both T4 and T3 in multiple tiny amounts throughout 24 hours. Rates will vary (it isn't going to be exactly the same amount every hour or whatever.) but it is a lot closer to continuous than taking in one, two, three or more divided doses could ever be.
The pharmacist phoned me on Thursday, without as much as an apology for not phoning on Monday as was arranged by the Doctor. Anyway, she started off saying that this was purely a financial decision. I put forward the arguments we all discussed and she said “ok, that makes sense “, e voila, sorted. She sent a prescription for 10mcg tablets to the chemist.Maybe we should do this more often. I mean, discuss a problem and make arguments for and against a decision.
It might help those less confident?
Exactly, but the problem is we should not have to. It’s “their” job to work that out not ours! Why should patients have to stress themselves out researching and then debating with people whose job it is to know better. What’s worse is they influence the GPS without even knowing patients history so it’s a one size fits all. Sorry for the rant but it’s a pet hate of mine!!
I totally agree with you.The doctor should discuss any proposed changes with the patient not the in-house pharmacist. If any questions arise which the pharmacist might be able to shed light on, that conversation should be with the Dr not the patient.
Too many cooks spoil the broth!
alternate daily dosing with T3 is just plain wrong . even if someone is also taking T4 with it it. You mentioned earlier that your GP was concerned about cardiac issues hence the dose reduction from 20mcg T3 to 10mcg T3 .
In the light of cardiac issues the idea of giving someone 20 mcg T3 one day then nothing the next etc, is even more ridiculous.
T3 is very important for the heart ,and if fT3 levels are going up and down as drastically as they will be doing on this dosing regime , then the heart muscle won't know whether its coming or going .
I would think that alternate dosing of 20 mcg then 0 mcg then 20mcg is likely to CAUSE heart issues. .. it certainly won't like it very much .
If the pharmacist comes back to you and still say's it's fine to do alternate dosing for T3 , i would strongly recommend you insist they get a second opinion from an endocrinologist who is experienced in using T3.
Thank you, these are my thoughts exactly!On Monday I expect the consultant pharmacist to phone me to answer my questions. I will also have blood taken and have specifically requested T3 and T4 as the GP normally checks TSH only.
I sense that availability issues of 10 mcg will be given as an excuse as this is the reason why my prescription was changed in the first instance. I suspect they might say take it or leave it as that was the attitude of the pharmacist when he could not source 10mcg tablets.
It’s a good job my brain is functioning at present. If I continue to get symptoms of severe hypothyroidism , brain fog will set in and I won’t know if I am coming or going.
If they really can't get 10mcg , they could have continued to dispense your usual 20mcg tablets and write your prescription as 'half a tablet daily' ... granted it's not ideal and some days your 'half' might be a smidge bigger than the other day ... but it's still going to be a lot more even than what they have told you to do ... so they can't argue that 'not getting the same dose every day' is any reason to not split your 20mcg tablets
and just for laughs ...there is also an even more ridiculous and wasteful option being used by some NHS endo's at the moment (who think people aren't capable of cutting a 20mcg tablet in half ).. they are telling them to dissolve the whole 20mcg tablet of T3 in 'x' much water , and then take up half that water in a syringe as their dose ,and throw the rest of the water away down the sink .... lol .. and this is official NHS guidance for wasting a hormone that is already far too expensive... and presumably didn't ought to be dumped into the water system either ..... of course anyone with a brain isn't doing this ...they cut their tablet in half and make their prescription last twice as long
The pharmacist said that he could not dispense 20mcg tablets to be halved as they are not scored .I have a tablet cutting machine which can successfully cut the smallest of tablets but he still wouldn’t trust me to do this.
If you ask me, whoever is making these stupid decisions needs sacking. From what I can see, the NHS spend more than they save
I have recently been diagnosed with celiac disease just before Christmas, and I have never been able to tolerate capsules of any form as I can't break them down and they make me feel really unwell. I would struggle with these new capsules, and they don't seem to consider the different needs of us as patients. I know I can put it in water, but how do we know it works as effectively. I also split my T3 dose 3 times a day, as prescribed by my Endocrinologist
On the basis that disperse/dissolve in water is a company-recommended approach, I think they will have to have proved it works sufficiently the same as full capsules.
My earlier link takes you to the Patient Information Leaflet. That does not list any obvious gluten ingredient. But I am aware that in order to be truly gluten-free, various measures would have to be taken during manufacture. I cannot answer to that level.
Further, some sufferers seem also to be unable to tolerate maize starch.
I suggest you contact the company, Roma. Contact details:
ROMA Pharmaceuticals Limited
Gibraltar House,
Crown Square
Centrum 100,
Burton-upon-Trent
DE14 2WE
There will be an email address available if you search.
Sorry to jump on board - with the new capsules, can a GP (England) prescribe them or is it still only an endo? Thank you!
I don't think that the capsules make any difference whatsoever to prescribing policy. (Except pushing towards the capsules because they appear less expensive.)
Okay - thank you. I thought I might not have to see an endo. I’m reluctant to see one because there are so few that really know what they are doing.
I am in Scotland but it is my GP that prescribes my T3, albeit on recommendation from Endocrinolgist. I would imagine England’s GP’s would have similar prescribing rights as both health care systems follow NICE guidelines
Thank you! I think my gp would do that too. I just need to find an endo!
Hi I did too. I also live in North Lanarkshire Scotland. I was on Mercury Pharma 20mcg tablets for past 6 years but changed to Hard Capsules by Roma for the last few months but they are not agreeing with me a lot of my symptoms have returned. Also the hard capsule is made from Titanium Dioxide which I am very unsure about!
I too am on Roma capsules and my skin is extremely dry and I am very tired. I am not sure whether or not the Roma capsule is the culprit. However, it is the only change in my medication.
The capsules have a tiny amount of titanium dioxide in them.
But you can easily avoid that if you wish. They tell you in the Patient Information Leaflet.
If you have difficulty swallowing a whole capsule, empty the contents of a capsule into a minimum of 20 ml of water. Stir and drink the whole liquid to ensure you take the full dose. It is possible to do this with Liothyronine because this substance is soluble in water.
medicines.org.uk/emc/produc...
Thank you. Any idea why hard capsules of Liothyronine was unlicensed in the UK til earlier this year and now available? I’m not doing so well on them as I’ve heard others aren’t either. Mercury Pharma tablets I did great on a lot better than Morning Side or the Teva brand of tablets.
A new product was created, a company applied for licence, it was granted. (Originally Colonis, who appeared to sell the rights to Roma.) Then they started getting it contract manufactured and supplying the market.
I'm not aware that it was available anywhere in the world before the UK.
They appear to have carefully avoided common problem ingredients like lactose, mannitol and acacia. And provided clear instruction on avoiding swallowing the capsules.
One member reported problems as they are sensitive/allergic to pork - and the capsules appear to be porcine. Otherwise there haven't been many issues reported. (Except the problem of dividing them, if needed.)
Confused Re doctors letter?!
Letter from Scottish Government
Letter from endo to GP - advice needed
Endo letter regarding t3 assessment
