Can we get a petition going : Apologies if this... - Thyroid UK

Thyroid UK

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Can we get a petition going

Itsallshit21
Itsallshit21

Apologies if this is not allowed ...... I know this is never going to happen ....but wouldn't it be fantastic if the NHS set up Thyroid clinics which we could attend, where, in an ideal world, we would have confidence in the GP's, clinicians, endos that work there as the thyroid and all its symptoms would be the only thing they "specialised" in. They could have their own lab for blood testing then there would be none of this ......"its our lab results which will be completely different to other labs readings so you can't compare"

Sorry but im so peed off with feeling shitty, nobody listening, except you fantastic people on here, and the more I look into things, the more anxious and depressed I become. I'm just too exhausted to battle 🥴

66 Replies
helvella
helvellaAdministrator

There are some NHS thyroid clinics. Try this search:

thyroid clinic site:.nhs.uk

(That will most likely only find such clinics in England - almost always, the term NHS and the internet domain just nhs.uk apply exclusively to the NHS in England only. Northern Ireland, Scotland and Wales often use different domains - or at least, subdomains.

Northern Ireland

online.hscni.net/

Scotland

scot.nhs.uk/

Wales

wales.nhs.uk/ and health.wales/ )

We rarely hear specific mention of these clinics. I guess some are standard outpatient clinics and no-one claims them as anything special. But, just possibly, some are good and the patients who use them don't feel the need to join up here!

Scrumbler
Scrumbler in reply to helvella

Some of them are o/p Diabetic Clinics 🧐

helvella
helvellaAdministrator in reply to Scrumbler

I'm sure some are. But I think there are a few which specialise in thyroid.

In years past, there used to be a thyroid register - mandatory for GPs to maintain a list of hypothyroid patients (not sure if they were supposed to include hyperthyroid patients). Part of the rationale was to ensure that no-one got missed, year after year. I think that went as computerised records theoretically meant there was no need - anything could be checked by a quick scan. A shame...

Scrumbler
Scrumbler in reply to helvella

It is. I’ve never heard of that. There is a Thyroid Clinic in Birmingham - based at a private hospital.

Bearo
Bearo in reply to helvella

What about Centres of Excellence? I only just heard this phrase. Are they really excellent or no better than anywhere else? Does an entire hospital become one because it’s the biggest in the area or do different departments earn the title?

helvella
helvellaAdministrator in reply to Bearo

I've long thought that they exist to sound good but it is always possible some really are good.

Scrumbler
Scrumbler in reply to Bearo

It’s different departments Bearo, although the bigger the hospital the more potential there is for attracting the expertise in those areas.

For example QE, the new hospital in Birmingham is a centre of excellence in Critical Care and is the largest unit in Europe with 100 beds.

Bearo
Bearo in reply to Scrumbler

Thanks for the explanation, Scrumbler!

Scrumbler
Scrumbler in reply to Bearo

You’re welcome 😊

Morning, im pleased to see my post was accepted and got a debate going and thank you for your responses. It is criminal that there are so many people suffering from this autoimmune condition who are not being heard or listened to, talked down to by so called professionals, and, we, ourselves have to do our own research, medicate ourselves and pay for it, when there are so many people with other conditions, sometimes inflicted, get free prescriptions !!!

Not all thyroid disease is autoimmune 😉

helvella
helvellaAdministrator in reply to Itsallshit21

free prescriptions

Prescription charges only exist in England. Not Northern Ireland, Scotland and Wales.

My concern is that should the government decide to address this issue in England, they might come up with something that could make some people worse off.

One idea seems to be to more-or-less automate the prepayment certificate and avoid one of the very bad aspects of it. Something like, you pay for each prescription until you have paid the equivalent of the current repayment certificate. Thereafter, you are treated (perhaps for the rest of the year) as holding a prepayment certificate.

That would cost many the price of a prepayment certificate. Which is the negative.

But for those who had no obvious reason to pay for a prepayment certificate, who then suddenly need multiple prescriptions, it would cap their charges.

Scrumbler
Scrumbler in reply to helvella

Sorry Helvella. Non comprendo. I’m sure it doesn’t lack clarity but my comprehension skills are down today 🙃

Do you mean that everyone would get free prescriptions up to the value of a PPC and would then have to buy a PPC for rest of year?

helvella
helvellaAdministrator in reply to Scrumbler

No.

It would be a sort of account. You "deposit" an amount equivalent to the prescription charge for each prescription you get dispensed. When the "balance" (total paid) reaches £105.90, the current prepayment certificate cost, the rest of your prescriptions would be treated as exempt from charge.

This could be on a strictly annualised basis, or some rolling time frame.

All speculative.

And it would require the pharmacy to use a computer system to check where you are each time you get a prescription dispensed.

Scrumbler
Scrumbler in reply to helvella

Aah. I understand now. Interesting, but as you say it could penalise that group who never had need of a PPC.

I’m very cynical about ‘free’ prescriptions (not PPC). In spite of the fact that the pharmacist is supposed to document evidence of entitlement, it’s clear that many do not. I actually heard one pharmacist tell a customer who offered evidence that he wasn’t there to do the government’s administrative work.

I’ve lost count of the hours I’ve spent waiting for prescribed meds where I’ve never seen any money changing hands.

Tick the box and sign Sir.

All PPCs? I don’t think so.

tattybogle
tattybogle in reply to Scrumbler

It's not just the pharmacists that don't check the entitlement.. i had never applied for an exemption certificate, i was ticking 'medical exemption' for 8 years , believing that hypothyroidism diagnosis, and levo prescription was automatically medically exempt..... nothing ever happened.

To be fair , i usually only had repeats for levo and no other drugs, maybe i would have flagged something up somewhere if i was getting prescriptions for loads of 'other' drugs .

But it seems to me that the operations room in the free prescriptions entitlement department must resemble the 'Marie Celeste'

Scrumbler
Scrumbler in reply to tattybogle

Hypothyroidism dx is exempt. If you have a medicated diagnosis your entire prescription is free. They don’t call it hypothyroidism in the list, they call it Myxoedema just to confuse everyone.

The pity of it is that Graves and hyperthyroidism which require medication are excluded.

helvella
helvellaAdministrator in reply to Scrumbler

Not quite true.

Myxoedema entitles you to a medical exemption certificate. But it is actual possession of that certificate which provides exemption from prescription charges. Diagnoses as long as your arm don't exempt you!

If you do not have one, for any reason, you should be charged - with the option of a special receipt which can be reimbursed.

It is possible to argue that those on block-and-replace are suffering hypothyroidism, albeit iatrogenic, therefore entitled to exemption. I wouldn't wish to have to resolve that one!

Scrumbler
Scrumbler in reply to helvella

Oh dear. I’m not doing well today 🙃. My cognitive skills have gone on holiday.

Why would people who have an entitlement to an exemption certificate not claim it?

Please put answer in words of one syllable 😊

helvella
helvellaAdministrator in reply to Scrumbler

The point is that your doctor has to have signed the form, and it be sent to the people who issue them, and you receive the exemption certificate.

Many do not realise, or have not yet completed that process.

People have been fined for claiming exemption and, whilst being fully entitled, not actually been in possession. That is why I am making a big deal of it.

Quite often, the person had even received a certificate at some earlier time but failed to renew it. (I think at one time, that was not necessary.) Their justification/entitlement in terms of health might not have changed one whit.

Scrumbler
Scrumbler in reply to helvella

Thank you for clarifying that. I’m sure most people don’t know that. I didn’t simply because I became hypothyroid and had cancer 6 months after I was 60 - so didn’t need the medical exemptions.

Localhero
Localhero in reply to helvella

I was paying for my prescriptions for ages and no-one in my surgery said a word. It wasn’t until a lovely woman in the chemists told me of the medical exemption scheme and actually gave a form that I realised I was entitled to free meds. Hurrah for her!

Miffie
Miffie in reply to helvella

I carried my exemption with me at all times although for a good decade I used a pharmacy who updated the records every time my exemption was renewed. Despite that they did do periodic requests to see the exemption card. I have noticed in recent years the number of people with no prescription charges has increased massively. Twenty years ago it was relatively rare, or perhaps I was living in an area with rather different demographic.

helvella
helvellaAdministrator in reply to Miffie

More recently, there has been all sorts of argument between pharmacists and the NHS people:

chemistanddruggist.co.uk/ne...

If anyone wishes to check whether they are, or are not covered, it is possible to check online:

services.nhsbsa.nhs.uk/chec...

Miffie
Miffie in reply to helvella

Thank you, that was a very interesting read. In the last decade I have been spared having to show my exemption as I am now nearing 70.

It certainly is a complex issue. I suspect we need an advanced electronic system which allows patients to swipe exemptions and collect prescriptions.

I cannot imagine the headache of dealing with fraudulent dental claims.

Unless the private patient income many dentists enjoy could help foot that bill. 😏

tattybogle
tattybogle in reply to Scrumbler

oh yes .. doh! i forgot to write the bit that was the whole point of the story ... i never applied for an exemption certificate.

Scrumbler
Scrumbler in reply to tattybogle

Doh. The story makes more sense now 🙃🙃

Scrumbler
Scrumbler in reply to helvella

Further to my last post, these people are entitled to free prescriptions

nhs.uk/nhs-services/prescri...

helvella
helvellaAdministrator in reply to Scrumbler

And those resident in Northern Ireland, Scotland and Wales - lest we forget them.

Scrumbler
Scrumbler in reply to helvella

Oh yes. Sorry 🙃🙃. I wish everything was simpler 😎

jacobite33
jacobite33 in reply to helvella

Hey hellvella hope your well!?

Read itsallfaeces post and Just checked the links you put up and can’t find anything on NHS Scotland regarding thyroid

Shame! That wouldve been a fantastic!

helvella
helvellaAdministrator in reply to jacobite33

:-)

Thanks for trying!

I don't know why nobody listens to us and I do wonder if it is because it is mainly women who suffer with thyroid disease? Men who have certain kinds of problems can now buy Viagra easily online or at pharmacies in this country but we have to buy NDT from abroad because we cannot get it prescribed here unless we pay a lot of money.

I have been offered counseling and antidepressants in the past when all I wanted was treatment for my thyroid disease. You can read my story on my profile page which is similar to a lot of other women who are not taken seriously and left to suffer.

In years to come will they look back at how we were treated or not treated in many cases and wonder why they got it so wrong?! I hope so ......

Scrumbler
Scrumbler in reply to Lora7again

Don’t want to annoy you Lora but if you have a medical condition that causes EDF you can get a free prescription for Viagra 😳

Lora7again
Lora7again in reply to Scrumbler

Ha ha ... how do you know this? 😉

Scrumbler
Scrumbler in reply to Lora7again

Sister a Diabetic Specialist Nurse 😊

Miffie
Miffie in reply to Scrumbler

My diabetic husband is still asked at every annual diabetes review if he would like viagra. To date it’s been a no! 🤣

Scrumbler
Scrumbler in reply to Miffie

🤣🤣🤣

shaws
shawsAdministrator in reply to Scrumbler

Maybe we should all order this and then leave none available for those who are in need. I'm sure a protest would soon be published. Whereas we - mainly females - are left in the lurch and we should not have to source elsewhere in the world.

We will have to do as the suffragetes did - chain ourselves to parliament. It's all very well for those who have the 'authority' to change but ignore our pleas.

Scrumbler
Scrumbler in reply to shaws

I wonder if anyone knows what the ratio is of women to men in thyroid disease?

lau99
lau99 in reply to Lora7again

I don't want to be "that" person but I definitely feel like there's an element of that as well...all of my endos thus far have been men, and I can recall more than one occasion when an endo accused me of not taking my medication when I was hyperthyroid because he assumed that as a young woman I'd try purposefully skipping carbimazole doses to "maintain my slim figure"...I was incredulous. I've also had a locum doctor shout at me down the phone for wasting his time because there's "nothing wrong with me" and another tell me to just learn to live with being hypothyroid. Not a shred of sympathy or even an attempt at being understanding from some of these doctors...

Lora7again
Lora7again in reply to lau99

I know exactly what you mean lau99 I took my husband with me to my Endo appointments and he didn't talk to me but addressed all the questions to him. I felt too ill to ask him questions so I just sat there. However when he suggested I needed to see a counselor for feeling so ill I seemed to get some inner strength and I told him I would not be coming back and walked out of his clinic never to return.

Scrumbler
Scrumbler in reply to Lora7again

We did have a member on here last week who was singing the praises of her female Endo (a professor of course) who didn’t even understand the concept of conversion and also insisted that you left 24 hours before testing NDT 🙃

I’m not inclined to make this a gender issue. The Endo who wrecked my health post TT was an arrogant woman who thought it was ok to leave me with an FT4 of 42 (12 - 22) to achieve an FT3 of 6.8

shaws
shawsAdministrator

Once-upon-a-time - long before blood tests were introduced by Big Pharma to make more profits - we were diagnosed upon symptoms alone and given NDTs.

Before that all of doctors were trained upon the clinical symptoms of those who had hypothyroidism. Due to our symptoms alone we were given a trial of NDT (natural dessicated thyroid hormones) made from animals' thyroid glands.

So from 1892 onwards patients were treated according to symptoms. Doctors knew all clinical symptoms and prescribed NDTs to patients (even a trial). Patients no longer died an awful death.

Big Pharma thought that more profits could be made by making a blood test to diagnose hypo or hyper instead of the skill of the medical professionals and levothyroxine (T4) instead of all NDTs.

Two of the last doctors who did as they were taught, were pursued as if they were criminals by diagnosing patients according to their symptoms who were given a trial of NDTs or T3.

It caused them immense stress and one had to appear before the GMC several times but always found to be doing nothing wrong and his patients sent positive testaments for their recovery with the correct medications. One doctor (Dr Peatfield) couldn't take the strain and resigned his licence but he was still able to advise patients with dysfunctional thyroid glands and return their good health.

parliament.scot/GettingInvo...

whatdotheyknow.com/request/...

I think that what we’ve said in this thread applies to many medical conditions, not just thyroid.

I’ve been having neurological investigations for 18 months and been fobbed off with weasel words and contradictions. I’ve got so much more unwell over the last year that I’ve been to a private hospital in this area and seen someone else.

I was diagnosed within two consultations by a brilliant consultant who actually listened and cared and bothered to examine me. I’ll be having a series of treatments within the next few weeks, starting on Wednesday.

While perusing the internet this weekend, I was flabbergasted to learn that the Consultant Neuro I saw In Worcestershire has written Research Papers on this condition. You couldn’t make it up!!

Just had another thought 🙃. Nurses and Nurse Practitioners in GP surgeries specialise in various areas and have frequent and updated training in these areas: diabetes; family planning; chronic pain; etc etc. GPs rely on their expertise quite heavily. Why on earth can’t they train Thyroid Nurses to do the same sort of work?

It’s the same in hospitals - Specialist Nurses for all kinds of cancer and yet I’ve never clapped eyes on a Thyroid Specialist Nurse to support Thyroid Oncologists and Endos. They could really ‘fill a gap’.

Gcart
Gcart in reply to Scrumbler

You are right there. I have had the most excellent cancer specialist nurses .

Apart from the fact they have listened they are go betweens with the doctors .

They’d always got results for me as a outcome of their input .

Why that should be is s puzzle? but who cares if you are helped !

helvella
helvellaAdministrator in reply to Scrumbler

Why on earth can’t they train Thyroid Nurses to do the same sort of work?

Which leads inexorably to the question of who would train them?

Scrumbler
Scrumbler in reply to helvella

Well ..... I can name a few people on here 🙂

shaws
shawsAdministrator in reply to Scrumbler

I think 'more than a few' and you're one who would be on the list :)

Scrumbler
Scrumbler in reply to shaws

😊

shaws
shawsAdministrator in reply to helvella

I agree and choose those 'Nurses' who actually have hypothyroidism but who did not progress on levothyroxine alone. That would be excellent as the Endocrinologists are failing in their duties by not doing everything to restore the health of those who have unfortunately developed a dysfunctional thyroid gland.

The fact, too, that neither do GPs! have a clue how to diagnose. I know full well having to diagnose myself thanks to a first-aider and TUK. How could the professionals not diagnose a patient whose TSH was 100 !

Expert Nurses would have to have a problematic thyroid glands.

I like this idea. At least this way there might be some resources dedicated to thyroid treatment care. I guess my fear, however, is that the experts that staffed such clinics would be trained in the same dogma as our GPs are currently (in other words TSH is the main driver of thyroid health; symptoms don’t really matter etc).

I don’t know how we achieve the massive reform in thinking about thyroid that appears to be needed. Totally agree it needs to happen.

helvella
helvellaAdministrator in reply to Localhero

I fear they could end up with their own battery of formulaic treatment - though possibly often better than we see today.

Scrumbler
Scrumbler in reply to helvella

I don’t think they’d get the green light for T3. They’d be good at interpreting blood results though and treating patients like human beings.

tattybogle
tattybogle in reply to Localhero

I've always thought the most realistic 'target' for action should be to show up the lack of knowledge by GP's that we see here so frequently.

? perhaps a survey of GP's responses to some undisputed factual questions about:-

# Describe the Diurnal Rhythm of TSH ? ,

# How long after ingesting T4 is the time of peak fT4 in bloods ? (they teach vets this , doctors ought to be embarrassed that they don't know) ,

# What is the most common TSH level in healthy people without thyroid disease ? (as opposed to the reference range, which includes (? )97.5 % of the population including the oddballs)

# What is the smallest dose reduction you can make that will effect TSH and symptoms, and how would you achieve it when the smallest (affordable !) tablet is 25mcg's ?

# How would you differentiate between hyperthyroidism caused by Graves Disease, and hyperthyroid TFT's caused by hashimoto's disease. ?

# Name 10 signs (A sign is an objective, observable phenomenon that can be identified by another person.) of untreated hypothyroidism. ?

# What is the difference between T4 and T3 ?

# What is T3 ?

# How much does 20mcg T3 cost in Germany ?

# How much does the NHS pay for 20mcg T3 ?

# Are you awake Dr ?

# What do you think needs to change to help the 10 - 15% of hypothyroid patients who do not do well on Levothyroxine ? ** ( **Ok ,not factual, but would be interesting to hear the answer)

# How would you help them in the meantime ? **

# What are the NICE guideline for treating symptomatic subclinical hypothyroidism ?

# If we bring you Chocolate Hobnobs will you be nicer to us ?

# What are the risks to heart and bone of having TSH above the reference range?

# What is the recommended TSH level for first trimester in Pregnancy ?

# ?

# ?

Or.... at the very least , we should print this out and ask any GP who want's to alter our dose, to fill it in with the right answers before we agree to be treated by them... ( then print off 10 copies and accidentally leave them pinned to the notice board in the surgery)

When we are finally allowed back in to the waiting room! ... we really should do something about the fact that you never ,ever, see the word 'thyroid' on the notice board.

:)

guerilla pamphleting ?

Localhero
Localhero in reply to tattybogle

# If we bring you Chocolate Hobnobs will you be nicer to us ?

Genius! I had not considered this persuasion tactic! 😂

And, you’re quite right. Plenty of leaflets for diabetes, weight management etc, etc. But nothing for thyroid.

tattybogle
tattybogle in reply to Localhero

i stole it from the building industry ... if you are sad enough to read the small print on the Terms and Conditions of your concrete delivery...you will often find a buried sub-clause about "sub standard biscuits"

helvella
helvellaAdministrator in reply to tattybogle

# How long after ingesting T4 is the time of peak fT4 in bloods ?

And the next question should be:

# How long after ingesting T4 is the time of peak fT3 in bloods ?

It will be even less widely known.

tattybogle
tattybogle in reply to helvella

indeed ... actually i can't answer that either... would have to look it up :)

helvella
helvellaAdministrator in reply to tattybogle

Around 48 hours.

shaws
shawsAdministrator in reply to tattybogle

My GP told me that TSH was too low, T3 too high and T4 too low.

I said "Doctor my T3 is high because I take T3 aone" I do not take T4.

His response: "but T3 converts to T4"!

Hidden

Scrumbler
Scrumbler in reply to shaws

I despair. It would be funny if it weren’t so appalling and dangerous 😞

Whoa, thank you all for reading my post and joining in a debate. I agree with specialist nurses, my daughter was a nurse working on ICU, she knew more then the doctors, not just me saying that, the doctors said it too. My Dad was on the ICU ward my daughter worked on for the last week of his life, and each doctor who worked on there, complimented her and the other nurses on their knowledge and expertise and admitted, in some respects, they turned to the nurses for advice as they knew more then them!!!!

Is your hypothyroidism genetic? My dad had uat but I don't remember him ever saying how ill he felt, he was always tired but battled through it but then again he did have other health conditions, liver being the main one but also reflux 🥺

I had a blood -test -result phone call from a nurse practitioner and I do wonder if he is regarded as a thyroid specialist in the practice - I shall have to ask them.

The phone call didn’t last long as he suggested I was now hyperthyroid and how was I feeling as my TSH was low. I ended the phone call at that point as I’m hypothyroid. He did ask me how I was feeling, so maybe I should have given him a bit more time.

What a nice chat you have started ..

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