Panic is setting in: Hello everyone, I am hopeing... - Thyroid UK

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Panic is setting in

Kitten-whiskers profile image
21 Replies

Hello everyone, I am hopeing someone can put my mind at rest please.  I have not had a thyroid blood test for well over a year, then out of the blue I received a letter with a blood test form saying I had to have the Thyroid levels checked, what concerned me firstly was this was not requested by my GP or any GP at the surgery but someone unknown.

Now I have received a letter from the NHS saying my excemption card runs out so I must contact the doctor and fill out another application, is this normal? everyone I have spoken to, including the pharmist said the excemption cards are automatically sent out.

I am so worried they are going to stop my liquid T4, I can not be without it and I know I can not buy it anywhere. I tried cutting back a  few months ago with devasting consequences.  

Am I just getting worked up over nothing?

Thank you x

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Kitten-whiskers
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21 Replies
Clutter profile image
Clutter

Kitten-Whiskers,

It is usual to ask hypothyroid patients to have annual thyroid tests.  Reminders to have check ups are usually sent by NHS England on behalf of GP surgeries.  As long as you have the thyroid test your Liquid Thyroxine prescription should continue.

I believe the Exemption cards need renewing every 5 years until age 60.

Kitten-whiskers profile image
Kitten-whiskers in reply to Clutter

Thank you clutter,   I was told by a number of people that the excemption card is just automatically renewed.   My TSH normally comes back around 12.6 so it's only just out of range (in there eyes) so I am worried they are going to stop the medication.  The letter came from the surgery.

Im sure your right, I am a bit of a worrier : <

in reply to Kitten-whiskers

Kitten-Whiskers,

I had a computer generated letter for a renewal Medical Exception Certificate from NHS Head Office in Newcastle Upon Tyne (although I live in Brighton.)

You need to get your GP to sign form FP92A & send it off for a renewal card to be sent.

Renewal reminders are supposed to be sent out but I think it a bit hit & miss as to whether we actually receive a reminder of not.

As Clutter said they require renewing every 5 years.

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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

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Kitten-whiskers profile image
Kitten-whiskers in reply to

Thank you Flowers0007, that has put my mind more at ease.

Clutter profile image
Clutter in reply to Kitten-whiskers

K-W,

People have been prosecuted for not having a valid exemption card when it has expired.

TSH >10 is overtly hypothyroid.  I very much doubt your prescription will be stopped.  It's likely you'll be advised to increase your dose but I know you've difficulty in tolerating higher doses.

Kitten-whiskers profile image
Kitten-whiskers in reply to Clutter

Thank you Clutter, I will ring up the surgery tomorrow.

It must be the lack of sleep causing me to get worked up like that

in reply to Kitten-whiskers

Hi, I used to think it was automatic but it does have a date on... x

Kitten-whiskers profile image
Kitten-whiskers in reply to

Thank you Mango x

Pixielula profile image
Pixielula

I don't think I have ever had a reminder that my exemption certificate I due to run out, I have to make sure I remember and apply for the new one!

Kitten-whiskers profile image
Kitten-whiskers in reply to Pixielula

Hello Pixielula,   I knew mine was running out but people including the pharmasit said they just get automatically send out, thats what caused the worry but I guess things have changed

galathea profile image
galathea in reply to Kitten-whiskers

I have had the exemtion cards for over 25 years and have never ever been sent a reminder and i have to remember and re apply every time.

I got my first card 18 years ago. I've never received another one, never been asked for it and don't even know where it is! I've also moved about 4/5 times since. So, dont worry, all the pharmacists know you need thyroid meds for life so they ey shouldn't challenge anything. I am hoping anyway!  Have you changed address since the last card? Maybe that's why they are contacting you. I get tested annually too, it's the norm :-))

helvella profile image
helvellaAdministratorThyroid UK in reply to

You could find yourself in a very unpleasant place if caught. The legal situation is that it isn't entitlement but possession that is necessary.

in reply to helvella

I'm not advocating criminal activity! I'm merely pointing out my situation. I got the card 18 years ago and assumed it was for life as no one said differently. No one's asked to see it or even mentioned it to me. This post is the first I've heard of it being renewed. I don't understand why it needs renewing when thyroid meds are for life. I shall ask my gp about it and get it sorted. :-)

helvella profile image
helvellaAdministratorThyroid UK in reply to

It wasn't meant as a get at you! It is obvious that you are entitled so net effect - nil.

Simply a warning that there really have been some cases. And there has been a clampdown - reported here:

bbc.co.uk/news/health-30622544

Not sure if the plans went ahead as described.

What pharmacy staff must do

Pharmacy staff are reminded that unless patients are exempt by age and the date of birth on the prescription is computer generated, the patient is required to complete the exemption declaration and pharmacies are required to check for proof of a patient’s exemption status at the point of dispensing.

At the point at which the patient is asked to declare their exemption and the patient makes a declaration on the back of the prescription form, the patient must hold the required proof of exemption, and this must be within its period of validity – pharmacy staff are expected to check evidence of entitlement.

If the patient is unsure of whether they are entitled to free prescriptions, pharmacy staff should ask them to pay for the prescription, and issue them with an FP57 prescription receipt and refund form and signpost them as to how they can obtain the necessary certificate.  This enables the patient to receive a refund of paid prescription charges once they have obtained the necessary certificate.  This can be processed at any community pharmacy.

Where appropriate, pharmacy staff should advise patients of the required certificates and how they might go about obtaining them (e.g. Medical Exemption Certificates required for patients suffering from diabetes, epilepsy etc. as well as exemption certificates on maternity grounds, low income, or Prescription Prepayment Certificates (PPC)). 

Where patients do not have evidence or where there is doubt over whether the evidence provided is appropriate, the “Evidence not Seen” box on the back of the prescription should be marked with an X by pharmacy staff. Pharmacy staff need not refuse to dispense items on the basis that the patient does not provide evidence of their entitlement to free prescriptions.

psnc.org.uk/our-news/is-you...

in reply to helvella

Think I will apply for another one, just in case! :-)

galathea profile image
galathea in reply to helvella

Best thing you can do is go to the doctors receptionist and ask for a form...   Fill it in, the doc signs it and you get an exemption certificate for 5 years.      It should be automatically renewed, and it should be automatically granted as soon as you get thyroid meds, but it is'nt because we have an antiquated paper pushing system.....   Imagine ,  computers and the internet have been in common use for 23 years, but you still have to get a form and get it signed and posted....  :-).  

Kitten-whiskers profile image
Kitten-whiskers in reply to galathea

Hello Galathea,

Thank you for your reply, I am waiting for a call from the GP, it's not so much the exemption card, it's more them either stopping my meds or trying to give me a cheaper alternative that is bothing me : <

I have not had a blood test in well over a year and now just as my card is due for renewal, I am told to have a blood test.  I can't help being sceptical when the doctors are concerned.

Kitten-whiskers profile image
Kitten-whiskers in reply to

Good morning StillSearching,

I hope you get things sorted, I quite agree - Thyroid meds is lifelong so why keep renewing the card, we do not miraculously recover, or even feel well on the stuff.  I haven't moved, maybe it's a differen't procedure depending where you live.   I will get to speak to the Doctor today and claify whats needed.   As if we need this aggro when so poorly

Pixielula profile image
Pixielula

I have had to pay for a prescription before many years ago then claim it back it was such a fuss I never bothered. But I like, stillsearching, didn't realise it had expired and the chemist wouldn't let me use it. It's not like my hypothyroidism is likely to fix its self! although reading some of these post, it appears a lot of medical professionals believe it will!! I carry mine with me now but have never had a reminder and when I did renew it I was told it was "my responsibility" to make sure it was in date. With an added note saying "you don't get a reminder to MOT your car" to which I replied "actually I do" 

Kitten-whiskers profile image
Kitten-whiskers in reply to Pixielula

Morning Pixielula,

I was always told it was renewed automatically.  It seems quite a lot of effort to have to contact the doctor, drive all the way for a form when they no that I need the medication.   I just hope they don't stop the medication

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