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 🥴
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Littlebuddha
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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.
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!
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?
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 !!!
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.
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 ......
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...
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.
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...
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.
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.
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.
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.
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"
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.
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.
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.
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'
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!
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.
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.
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!
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Can we talk about diet and supplements please? 
Endo says he knows Il be better on T3 but not going to give it???
Does a TSH of 5.16 mean that I have mild hypothyroidism? 
WHAT CAN WE DO need T3 
petition to improve endo services for thyroid sufferers
