Manufacturers and Distributors: Today, I had a... - Thyroid UK

Thyroid UK

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Manufacturers and Distributors

helvella profile image
helvellaAdministrator

Today, I had a discussion with my GP (to put it politely).

He mentioned that they do not like prescribing 12.5 microgram tablets because they are more expensive. I replied saying that when I tried Teva 12.5, I felt unwell and would not want them again.

He then said that there are five makes available.

I said, no, there are not. There is just one.

He said his EMIS system tells him there are and mentioned a couple.

I pointed out that, just like the British National Formulary, the system appears to be listing distributors – not manufacturers. That there is only one licensed 12.5 microgram levothyroxine tablet. Invited him to check the MHRA Products database if he wished.

He wasn’t happy.

Yes, it’s true, if we swapped places, I find me really, really annoying. (If you see what I mean!)

But I can’t unknow what I know. I can’t sit back and not respond to untruths (even if inadvertent).

I am struggling to understand what EMIS is doing? Why would a GP care about distributors? For that matter, why does the BNF bother with distributors and miss manufacturers?

82 Replies
SeasideSusie profile image
SeasideSusieAdministrator

I probably shouldn't be laughing but I am 😄. I would have loved to have been a fly on the wall.

I'm laughing to! lol He picked on the wrong man, there!

That was my very first thought too SSusie! LoL

Because the NHS is moving to an American system, with ICOs dictating what they will and will not do. I imagine that there will be distributors that have NHS contracts and you get what you are given from a restricted list. It is really no different to online grocery retailers having a limited list of what they will supply. Boots already restrict your choice to what their distributor will provide and this will become more widespread.

helvella profile image
helvellaAdministrator in reply to Mollyfan

Though it is hard to fathom what any distributor would do if it didn't have a contract in that scenario! The only option would appear to be to go bust.

Mollyfan profile image
Mollyfan in reply to helvella

amp.theguardian.com/comment...

Mollyfan profile image
Mollyfan in reply to Mollyfan

What makes you think the government would care?

Well - I'd be very happy to have a doctor's appointment with you any day of the week !!!

fredjones profile image
fredjones in reply to pennyannie

I would be happy to get a doctors appointment full stop! The clunky GP telephone system before you reach a receptionist and then to be told sorry there are no more telephone appointments today ring back tomorrow at 8am really raises my blood pressure.

helvella profile image
helvellaAdministrator in reply to fredjones

I rang several times and got cut off every single time.

But they do have the option to email, which I did.

I was expecting a triage callback - but ended up with an appointment, in person. They then emailed me to ask what was my issue. I said I was unwilling to communicate personal medical information by email due to its inherent insecurity. (Saying I want an appointment is fine. Not why or any other detail.)

Got criticized for that!

But it is because the surgery has not implemented a secure system for electronic communication. Not my unwillingness to speak on a phone call or communicate in the most general sense by electronic means.

My daughters surgery will not give her an appointment or allow her to have a phone appt unless she tells the very rude receptionist the reason why. When she says it’s personal she is told she has to give them the reason or she won’t get an appt. It’s outrageous in my opinion.

I have to also do that as well, tell the receptionist the reason I need an appointment

shaws profile image
shawsAdministrator in reply to Goldengirl01

We should not have to tell receptionists what we want to say to the doctor. It is supposed to be private. Why should we be forced to tell an employee in the surgery of what we want to discuss with the GP. It is disgraceful.

pennyannie profile image
pennyannie in reply to fredjones

Fortunately I've had no need to have a doctor's appointment since I started self medicating almost 4 years ago and am now, much improved and minding my own lack of thyroid hormones since RAI ablation for Graves and now taking full spectrum :

shaws profile image
shawsAdministrator

Yes, why doesn't the professionals know other than to give a prescription, They know nothing about the tablets they are prescrbing. He just wants to wriggle out of your query and give you any option he thinks of.

The BNF have probably never, ever discussed thyroid hormone replacements with the manufacturers.

You caught him out by stating !the system appears to be listing distributors – not manufacturers. I would think he would be stumped and couldn't answer your query.

I think GPs are the most unknowledgeable people when it comes to knowing/being aware that there is more to prescriptions other than levothyroxine. Like mine told me that T3 converts to T4!

JGBH profile image
JGBH in reply to shaws

From experience, I think GPs know very little of what is necessary to be a doctor! What on earth are they taught at medic schools? I can see it’s all gearing up to embrace the shoddy American system! The politicians and some people high in the NHS hierarchy are busy selling the NHS at the moment… Most worried it will soon disappear.

shaws profile image
shawsAdministrator in reply to JGBH

I hope not - the doctor who made the above statement to me is near retirement age so I am assuming few of his patients recovered their health if they consulted him..

Batty1 profile image
Batty1 in reply to JGBH

What American system are referring to?

JGBH profile image
JGBH in reply to Batty1

Hello Batty1You are living in America and you do not have the medical service that exists in the UK. It is well known people living in the US have to buy medical insurance to be able to access medical help. Many people can’t afford this and consequently aren’t receiving the care and treatment they need.

You might know, here, in the UK we do not need to buy medical insurance and that we can consult doctors and hospital consultants free of charge, at the point of need, once referred by primary care doctors (GPs: general practitioners). So everyone can receive help when needed. We pay NI contributions (National health contributions) while working.

However, the NHS (National Health Service) has been under much pressure for a very long time, grossly underfunded by the present government, This, together with an elderly growing population puts a huge pressure on what the service can deliver. There are long waiting lists (made worse by the Covid situation ). The politicians together with some people high in the NHS hierarchy (not usually medical people, rather “administrators “) have been working with some American medical health insurance companies (behind the people’s backs) in trying to introduce medical insurance in this country. Already many GPs surgeries (primary care) are contracted out of the NHS by the government to private companies. Unfortunately many people in the UK aren’t aware of this yet… Consequently the NHS as such will disappear. Sold out to private companies for a big profit. Hence in the footsteps of America. That will have serious consequences on many people’s well-being and lifespan. As usual, the most vulnerable will be the ones to suffer the most. Of course, private health insurance already exists here, either via work but often for people who are financially well off.

I hope this has clarified the situation. Perhaps other people on the forum could explain this better.

Batty1 profile image
Batty1 in reply to JGBH

The US does have healthcare for those who can not afford it its called Obama Care (cost based on income), medicaid (disabled) and medicare (seniors) and all of these options are still going to cost you a little bit of money except maybe medicaid. I don’t know about the insurance companies except they are in the business of making money.

JGBH profile image
JGBH in reply to Batty1

Thank you for your concise explanation of the various medical services offered in the US. I knew about Obama Care, However as you said one has to pay a little bit. Here, no one pays at all. Of course insurance companies exist primarily to make money.

Timetraveler67 profile image
Timetraveler67 in reply to JGBH

My Taxie driver told me today that his daughter who is a pharmacist told him that in a year or so no one will see a Dr instead they will see a pharmacist because Drs will be busy doing other things. I tried to get more information but that’s about all he said except that his daughter is happy and looking forward to seeing patients

JGBH profile image
JGBH in reply to Timetraveler67

My goodness! No surprised though. So, what exactly will overpaid GPs do? They often can’t diagnose anything unless it’s staring them in the face…. As for pharmacists, that’s ok for checking on drugs but surely they’re not qualified to give any kind of examination? I can’t see this working.

Goldengirl01 profile image
Goldengirl01 in reply to JGBH

Some Ambulances already have the American logo on the side

I am sure people know nothing is free in life but people that work or did work now retired paid into the system with NI- national insurance contributions from their wages, as stated above. I dont know about the ones that have never worked and get benefits whether there is a deduction of some sort but unlikely so if we all have to get insurance eventually how will these people manage I wonder?

helvella profile image
helvellaAdministrator in reply to Goldengirl01

I think that discussions of USA versus UK health service funding and costs are beyond not just this thread, but the whole Thyroid UK forum.

Rather than closing the thread, could you please all just stop going in that direction - however important it is in general.

JGBH profile image
JGBH in reply to helvella

Agree. Have just noticed this post.

JGBH profile image
JGBH in reply to Goldengirl01

Is that so? What does it look like? Can’t say I had noticed.

BrynGlas profile image
BrynGlas in reply to JGBH

Not a lot for hypothyroid!

Well done you! Those GPs really need to accept facts! Oh yes! Don’t they hate the guts of patients like us who refuse to be fobbed off ad infinitum! So glad I am not the only one marked with a Red Cross on medical records! 😝They’ve been used to have facile patients… not to be confronted with facts…. for far too long. We disturb their all-important “doctors know best” world. Indeed why should they care about distributers? Are their surgeries receiving a bonus or? Bizarre.

Like SeasideSusie, I would have loved to have been a fly on the wall!

Don’t lose any sleep over that… sure you won’t!

MorecambeBay profile image
MorecambeBay in reply to JGBH

Don’t think he’ll do that. He’ll be preparing the script for his next ‘run in’ 😊

JGBH profile image
JGBH in reply to MorecambeBay

Quite right too! 😆

helvella profile image
helvellaAdministrator in reply to JGBH

Don’t lose any sleep over that… sure you won’t!

Poor sleep is probably one of the first symptoms of my being under-dosed. :-) Typically, I fall asleep but wake at some point and find it difficult to get back to sleep. It seems like a hair-trigger symptom for me.

When restored to a better dose, it immediately, that night and forwards, results in a better quality of sleep.

JGBH profile image
JGBH in reply to helvella

Pleased your quality of sleep has improved with better dosage. Poor sleep is a misery. Keep as well as you can.

BrynGlas profile image
BrynGlas in reply to helvella

I am the same Helvella. I intend go to sleep and wake up an hour or two later, often at the same time each night, though the time varies a little from time to time - at the moment it is 1.30 am - and unless qi didn't get to sleep at all, I just open my eyes at the time that is favourite at the moment and I am wide awake immediately!

3am was favourite for years. It was easy to take my Levo then in the middle of the night though, LoL At the moment I am not waking like that in the night, which is very nice. I think Tiromel is helping me there, which is wonderful.

I am not taking sleeping for granted, I have dreaded going to bed at night for years. I don't sleep during the day either, because I know that thereby lies disaster. Sleeping well is a blessing that I don't take for granted.

i'm strangely re-assured to find that even someone as patient and kind as you are , can still manage to piss off your GP when the subject turns to 'your thyroid treatment'

did you manage to resist referring him to your "home made vacuum" ?

SlowDragon profile image
SlowDragonAdministrator

Can you video the next encounter….we could all do with a good laugh

:) I enjoy watching the fear and insecurity flash across their eyes when they realise we know how to read lab results ..... it's only fleeting , before they manage to get their shit together and reorganise their face ... but it's there . Am i tuning into a psychopath ?

greygoose profile image
greygoose in reply to tattybogle

Probably! Join the club. :D

I love the pause on the end of the phone when the penny drops that they ‘have a live one’ on the other end.

I enjoy watching the fear and insecurity flash across their eyes when they realise we know how to read lab results .....

tattybogle you don’t just read though! Like many on here you are able to interpret your results. Fairly dreadful for most of the poor old GPs who can ONLY read the lab results and rely entirely on the erroneous comments after each result which further compounds their lack of understanding. 🙄

I can only imagine my GP’s face as I’ve not had a face to face appointment with him since April 2019 😁

shaws profile image
shawsAdministrator in reply to Gingernut44

You probably wont recognise him and he wont recognise you (or wish he didn't) when you begin your consultation. .

Gingernut44 profile image
Gingernut44 in reply to shaws

True, I think he cringes when he hears my voice 😂

Their lip trembles when you ask them your results and they say ‘normal’ and you say ‘Yes. But what’s the result?’

BrynGlas profile image
BrynGlas in reply to tattybogle

If you are, we all are. But my GP in Wales is part of the reason why I have sold my house and am waiting desperately for my buyer's solicitors to get their ideas together and complete the sale!

I accepted their offer in June and the solicitors they signed up with have given them new solicitors 3 times since then. We are all sick and tired of wondering when we will exchange, I signed my contract 5 weeks ago & I am still having to buy oil for heating. She is ringing them daily as are the estate agents, and now Covidis off again too.

I have got to back tomorrow now to see if the roof is still on after the last gales and to see that there is enough heating oil left. Of course it is all because of Covid isn't it?

That is the reason why they have had 3 solicitors resign since June as well of course. So between my useless GP and useless solicitors in Brum somewhere I am totally fed up. Even the oil company won't deliver me more heating oil, we are having to take 45 gallon drum to my North Wales mountain to keep the house dry!

tattybogle profile image
tattybogle in reply to BrynGlas

that sucks.... totally. I don't suppose you've been able to relax at all,... i know i wouldn't be able to.

I hope they get a move on soon .

I once had a house sale drag on for ages , it tuned out the bloke had decided to bugger off on holiday to Canada for "a few weeks" (8!) before signing his contract.

Hope all is well when you get there.

xx

45 gallon drum up a welsh mountain , , 'not' a fun day out, best of luck

BrynGlas profile image
BrynGlas in reply to tattybogle

Now answers to questions I sent on December 2nd haven't arrived with buyers solicitor up until today. And one had already been answered in October! I am ready to bang some heads together believe me.

tattybogle profile image
tattybogle in reply to BrynGlas

:(

hope you don't have to resort to DIY conveyancing, as well as DIY thyroid care.

BrynGlas profile image
BrynGlas in reply to tattybogle

ROFLMAO!!!

Are they distributors or license holders. I can’t find anything on BNF that says what they are listing (distributors or license holders) but it makes sense to list the license holder.

helvella profile image
helvellaAdministrator in reply to jimh111

Yes - it would make sense if they were licence holders!

You can find the definitive documentation (PIL, SPC and PAR) for all UK licensed products here:

products.mhra.gov.uk/search...

(The search mechanism is terrible.)

The BNF listing of medicinal forms is here:

bnf.nice.org.uk/medicinal-f...

BNF says:

Medicinal forms – categorical information about marketed medicines, such as price and pack size, continues to be sourced directly from the Dictionary of Medicines and Devices provided by the NHS Business Services Authority. However, clinical information curated by the BNF team has been clearly separated from the categorical pricing and pack size information and is included in the relevant section of the drug monograph.

bnf.nice.org.uk/about/how-t...

helvella profile image
helvellaAdministrator in reply to helvella

The dm+d entry for 12.5 microgram levothyroxine is here:

Suppliers for Levothyroxine sodium 12.5microgram tablets

Currently viewing Page 1 of 1 - 5 total products

Actual Medicinal Product (AMP) Supplier Discontinued

Levothyroxine sodium 12.5microgram tablets Alliance Healthcare (Distribution) Ltd

Levothyroxine sodium 12.5microgram tablets Teva UK Ltd

Levothyroxine sodium 12.5microgram tablets A A H Pharmaceuticals Ltd

Levothyroxine sodium 12.5microgram tablets DE Pharmaceuticals

Levothyroxine sodium 12.5microgram tablets Medihealth (Northern) Ltd

services.nhsbsa.nhs.uk/dmd-...

jimh111 profile image
jimh111 in reply to helvella

Thanks. You have gone into a lot more detail than I expected or understand!

What sort of person wants to labour under false assumptions? Who wants to go through life being ignorant? I always welcome being educated or put right on facts I have got wrong - knowledge is power. Your doctor is the one who’s really annoying! He must be rather insecure to get shirty about not knowing available Levothyroxine tablet sizes. He’s daft too try and argue with you helvella - I doubt there’s anything you don’t know about Levothyroxine! Did you direct him to your drop box?

The days of denying us knowledge has past when they tried burning books !

Your post made me smile, bless your heart. The knowledge of people in this group is amazing and it’s so wrong that we are correcting GPs. I am encouraging a few of my friends to get their own testing done. It’s such a relief that we can take some control of our own health and not have to rely on misinformation from those who should know better. Well done you!

Can't they cut a 25mcg in half?

helvella profile image
helvellaAdministrator in reply to Mlinde

Not quite sure who you mean by "they"?

This was my GP talking to me!

He was not willing to prescribe 12.5 tablets due to cost and suggested alternate day dosing. I prefer to split, and that is what I will do. (And, to be clear, I would not accept Teva levothyroxine tablets under any circumstance.)

Mlinde profile image
Mlinde in reply to helvella

The patient

helvella profile image
helvellaAdministrator in reply to Mlinde

Me.

Actually the pharmacy will cut a 25 mcg in half and put them in a bottle.

helvella profile image
helvellaAdministrator in reply to MorecambeBay

Poor practice, in my view.

If you (carefully) split pills day by day, they will balance out. Whereas imperfections in splits done in bulk could lead to a run of "small halfs" followed by a run of "big halfs". :-) (Plus likely loss of crumbs.)

That’s true. A pharmacist told me to always use the other half of my T3 on the same day.

At the moment I’m pondering how to make 40 mcg T3 out of 2 x 25 mcg. Some may say the extra doesn’t matter but it certainly does.

Halves 😉

helvella profile image
helvellaAdministrator in reply to MorecambeBay

I knew you would respond with that! :-)

a) I was writing as I would pronounce;

b) Can you imagine half-and-halves versus half-and-halfs?

I’m so predictable 😉

Halve is a verb but just to confuse matters, it’s the plural of the noun half

Next time you see your doctor, check out his grammar and see if it’s any better than his medical knowledge.

He may understand that if you halve a 25 mcg tablet, you will have two halves and the cost of the medication should be a half of the original cost.

Take your tin hat with you 😊

shaws profile image
shawsAdministrator in reply to helvella

😁

helvella profile image
helvellaAdministrator

Have to confess now, whenever I read "Teva Levo", my mind starts to massage it to fit the famous old lullaby:

Too-ra-loo-ra-loo-ral, Too-ra-loo-ra-li,

Too-ra-loo-ra-loo-ral, hush now, don't you cry!

Too-ra-loo-ra-loo-ral, Too-ra-loo-ra-li,

Too-ra-loo-ra-loo-ral, that's an Irish lullaby.

I can't quite get it to work, which is likely why it keeps happening - an unresolved issue. :-)

About 1:09 into this video:

youtu.be/vmyPJhp-rKU

I agree sometimes we know a little bit more about our particular health condition. And I’ve had a similar experience with my GP about all this too. One practice partner did agree with me about the differing brands. Some work and some dont!. I think unless your GP names a ptic brand the chemist gives you the cheapest generic brand they can get. I’ve had loose tablets in a bottle with no brand name on etc and just levothyroxine and the dose.It’s all in some cases about money!

helvella profile image
helvellaAdministrator in reply to Thyroid2020

If they ever try that again, insist they supply the Patient Information Leaflet for the product they supply.

Thyroid2020 profile image
Thyroid2020 in reply to helvella

I did ring the pharmacy and ask they don’t have a product information leaflet. They just buy them in bulk in a big tub.

RedApple profile image
RedAppleAdministrator in reply to Thyroid2020

Thyroid2020,UK pharmacies MUST supply PILs with medicines they dispense. Buying in bulk is not an exception.

Unless all the information is on the pack, all medicines must include a PIL, regardless of how patients get them. gov.uk/guidance/medicines-p...

helvella profile image
helvellaAdministrator in reply to RedApple

Absolutely, RedApple.

If they get a bulk pack and split it, they need to acquire additional PILs (e.g. buy along the bulk pack from the supplier) or print or photocopy as needed.

There is NO EXCUSE for not supplying a PIL.

The MHRA and many parts of the medicine supply organisations in the UK repeatedly advise patients to read the PIL. If you do not get one, you can't read it!

My medicines document has descriptions of all UK thyroid hormone tablets and links to PILs. By using it, you can find out what product you have and obtain a PIL but that should not be necessary.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

From Dropbox:

dropbox.com/s/shcwdwpedzr93...

From Google Drive:

drive.google.com/file/d/12N...

You haven’t told us the end of the story. Did you get what you wanted?

helvella profile image
helvellaAdministrator in reply to MorecambeBay

Yes - prescribed as 25 microgram alternate days. :-)

Is there any other medication/hormone replacement where patients have problems like this? It's extraordinary.

helvella profile image
helvellaAdministrator in reply to Christabel

I do believe there were many issues when synthetic insulins came in. And a few medicines have been recognised as needing to be prescribed by brand name as they different products have significant issues.

None, though, seem as deep and wide as the issues with thyroid hormone. So many patients and such profound lack of understanding.

Hamelin Town's in Brunswick,

By famous Hanover city;

The river Weser, deep and wide,

Washes its wall on the southern side;

A pleasanter spot you never spied;

But, when begins my ditty,

Almost five hundred years ago,

To see the townsfolk suffer so

From vermin, was a pity.

Rats to you too.

But I can’t unknow what I know.

A heavy burden in your case, whereas I seem to unknow what I know all the time. ;)

Funny to imagine the doctor's reaction, along with his puzzlement at the sudden appearance of so many flies on the wall of the exam room.

He may not have been as grateful for your thyroid knowledge as we on the forum are, but in the end he's learnt something, both about Levothyroxine and about not underestimating patients.

👍👍👍

I totally get it. I tried to get on cytomel and my gp disagreed. I personally don’t believe they know that much about helping patients live a good quality of health . I’m going to try again but in the meantime I started taking selenium and zinc and I take 100 mcg of levothyroxine/Synthroid. The supplements are helping me lose a bit of weight It’s only been a few weeks. See what happens 🇨🇦

shaws profile image
shawsAdministrator

We have a right to tell doctors when we know for sure that they are giving us the wrong advice.

Just like my mother who took her doctor's advice that 'there was no need for her to continue her B12 injections' as her 'bloods were fine'. She had pernicious anaemia. Both myself and sister thought that was 'good'.

Little were we aware that the doctor's decision led my mother to develop stomach cancer and we had to plead, towards the end of her life, for more pain relief as we looked after her at home.

Another - was one of my GPs told me that T3 converted to T4!

My daughter now severely disabled due partly after complaining (from about 7 years of age) of her sore legs. After going back and forth to GPs, I then mentioned my sister had Rheumatoid Arthritis and he shouted at me 'for putting ideas into daughter's head''. Now she cannot do anything for herselfas she did have undiagnosed rheumatoid but thankfully she has a brilliant husband.

We should double-check anything our doctors tell us if our instinct tells us that whatever was said might not be right.

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