Please can you sign my petition ?: Hi, I’ve... - Thyroid UK

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Please can you sign my petition ?

CanIHaveYourJuiceBox
CanIHaveYourJuiceBox

Hi, I’ve created a petition to add hyperthyroidism to the medical exemption list. I have Graves Disease , which is lifelong and chronic. Hypothyroidism is on the list , so why isn’t hyper ? Any signatures would be really appreciated.

petition.parliament.uk/peti...

159 Replies
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Signed, just found out I’m hyper today xx

Oh bless you. Do you have any questions or need help ? I’ve been diagnosed for 18m now.

Aw how kind, do you follow a certain diet? I’ve lost so much weight and unsure what to eat! I have been referred urgently to a specialist but not sure when that will be xx

I put on a stone after I started carbimazole so now I just try and watch what I eat for weight reasons. I haven’t cut anything out , apart from bread because I feel it bloats me. You’ll probably start to gain weight , but don’t worry because you probably need to.

My urgent referral took six weeks so fingers crossed they get you in ASAP. Have they checked your antibodies ?x

I need to lovely as I’m 46kgs and 5.7! Oh I hope my referral doesn’t take that long, my heart is so fast xx

Oh lord that is scary ! Have they prescribed you with beta blockers ?x

No not yet think gp scared of getting sued as I knew what it was for months 8 months to be precise, do you take any vitamins? Xx

I’m on 20,000iu vitamin d which is on prescription as my vit d level is currently unreadable. It has been for over a year xx

I’m on b12 shots as not sure if I have P.A. too xx

What do you mean by unreadable? Mine was 7 when I was first diagnosed.

Partner20
Partner20 in reply to Vps1980

If you are hyperthyroid, and if your endo referral is taking a long time to come through, your GP must liaise directly with the endo department at the hospital to begin a course of treatment with carbimazole. It is very dangerous to let your levels get out of control.

Lora7again
Lora7again in reply to Partner20

I agree ... my GP started me on some tablets because I had been left untreated for so long.

Vps1980
Vps1980 in reply to Partner20

Gp said should be a few days to hear from specialist Xx

BrynGlas
BrynGlas in reply to Vps1980

Ooh that is terrible to hear I can't understand why thyroid patients hypo or hyper are always put onto the back burner! They are both life threatening, but we all seem to suffer from the same lack of care.

Vps1980
Vps1980 in reply to BrynGlas

Bless you xx

Vps1980
Vps1980 in reply to Vps1980

Gp doing that test in the morning after she denied for months I had a thyroid problem had a scan today and it showed my thyroid was massively inflamed xx

It took me four months to get diagnosed. In the end I told them what it was (I’m a veterinary nurse - cats have the exact same symptoms). They absolutely need to start you on beta blockers if your heart is going crazy ! That’s ridiculous xx

They tried to say it was anxiety this morning..... pathetic xx

That’s awful. Once you get to see an endocrinologist, they’ll take over your care luckily. If you’re based near me (Bradford), the endo at BRI is ace.

Unfortunately no I’m in Cheshire xx

Has your Endocrinologist suggested RAI or having your thyroid removed? Mine did that 10 years ago and I am glad I ignored his advice because here I am still with my thyroid.

Not everyone takes beta-blockers I didn't and it was my choice.

Lora7again
Lora7again in reply to Vps1980

What did the ultrasound report say?

Vps1980
Vps1980 in reply to Lora7again

Inflammation more so on the right xx

BrynGlas
BrynGlas in reply to Vps1980

I think I would go back to your GP, or send him a letter and tell him that you are not happy having to wait who knows how long to see an Endo and say that your rapid heartbeat is too much to bear as well as anything else that you can't leave waiting for who knows how long. I would say a letter would be best for you because if you see him again in person you will have no proof of what is said from both sides.

Sorry that I don't know too much about Hyper treatment, but I am totally sure that you need treating pronto and if he can't see that he should not be treating any patients at all in my view!

If he isn't going to give you any treatment surely he needs to get you seen as an emergency by an Endo???

Keep a copy of the letter you send too and when you sign it state that you have kept a copy! That might put the fear of God into him !

I would also start making a list of when you first started to realise that something was wrong and when you saw him, how many times you saw him, etc etc and what you were told and said.

At the same time, request to see your medical records, we are all entitled to those and with a bit of luck he will get his finger out! If he has done any tests on you, have you received a copy of the results? If not tell him that you want them ASAP and putting it in writing will hopefully make him sweat, as he darned well should do too!

Be prepared to put in a complaint to your Health Board, you don't have to sue if you prefer not to, but if more of us did sue, or did complain vociferously we might force the government to stop treating us as second class patients!! I am doing the same with my GP and complaining of over 2 decades of non treatment!

If we don't complain about poor treatment, we haven't got a hope in hell of getting any changes in the system. And the powers that be as well as the first point of call, OUR GP's, all need to know we are not going to take it lying down!

Paying for our own blood tests, and our own medication will not change if we do it quietly! I am not going to do that without a big fuss believe me!

ENOUGH IS ENOUGH!

Sorry, but this has really got to me and we are all being treated like unimportant idiots. It won't change unless we bring it to the fore, VERY LOUDLY!

I agree with everything you said !!

Great! I was worried that I might upset people and I don't want to do that. But I do think the NHS and government in general need a damned good shaking up.

People with hypothyroid at least, are paying for their own blood tests because their GP's won't agree to doing all thyroid tests on the NHS, most will only do TSH only, or possibly FT4 only - I found FT4 only results were in my medical record.

But unless we can have TSH, FT4 and FT3 all tested at the same time we don't know the full picture,

But hypothyroid tests for normal thyroid levels, TSH, FT4 and FT3 (FT3 is the only active thyroid hormone and we can't do without it) are being done privately for about £30 apparently by NHS labs, when a GP has refused to do the complete set of tests.

That can't be right can it?

I hope I'm correct saying that now, but I believe I am right.

I have been trying to learn about treatment for lowthyroid patients for the last year, because I realised that I have never been treated properly over 20 plus years finally and I have suffered desperately because I haven't had the correct treatment for me personally. I am not wearing it any longer.

What is going on is disgraceful and I am determined to not go quietly any more, I will die fighting this quite happily before letting it go on without making a great big noise about it, as my GP has found to his fury!

Sorry if I am upsetting anyone, I don't want to do that, but all thyroid patients are suffering and it needs to stop.

Vps1980
Vps1980 in reply to BrynGlas

Aw bless you ❤️ I’ve kept every e-consult and text from them xx

Redlester
Redlester in reply to BrynGlas

Share your anger BrynGlas - 20 years of non treatment and proper testing not done - 20 years of no life I am never going to get back - I'd actually like to have a petition which would require DIAGNOSIS of hypo. Exemption for hypo all very well but not much good if you can't get a hypo diagnosis in the first place and my endo has basically said he won't treat me until I am almost at death's door, by which time there would be little point in treatment - but perhaps that is precisely their point. So am self testing and self treating. No other option.

BrynGlas
BrynGlas in reply to Redlester

I have heard this on the Forum here and I am sure it is true, though I have never researched it myself. But apparently the Government or the NHS has 'doctored/amended' the criteria for being diagnosed lowthyroid at least, so that less of us are diagnosed and therefore less cost to the NHS.

Lowthyroid numbers were/are increasing drastically apparently and that means the cost goes up. They had already stopped us having anything but synthetic T4 /Levothyroxine, which works well for some, but by no means for everyone, me included. But those who it doesn't suit must be costing the NHS an awful lot of money with all of the resulting problems from stuff which may never have happened if we had had correct treatment and which must be costing them a fortune.

I can only think the hyperthyroid patients have similar problems with diagnosis and/ or other hyperthyroid problems which I know nothing of and we have been hearing that it took our friend 8 months to be diagnosed...... 8 months!?! For HYPERthyroid? They have all gone stark staring crackers haven't they? I really can't believe that this is happening in the UK in the 21st century.

But I think that everytime I hear the next bewildering story of someone who has been left to get on with it under their own steam!! Are we really in a civilised country?

It took them four months to diagnose me. I’m a veterinary nurse and cats have the exact same symptoms. I ended up telling them what was wrong with me. I demanded a TT4, got a call within 5 hours from the practice nurse basically telling me I was hyperthyroid and to look up the BTF website !! Zero advice. It took over six weeks for my referral. Only then were my antibodies tested and I was properly diagnosed with Graves Disease.

I saw a real endo once. All my follow up visits have been with an endocrine nurse. She is ok but it took almost a year to get her to listen to me. The carbimazole made me hypo - the bloods said I wasn’t , but my body said I was. They’ve finally reduced my dose to one I’m happy with. After my experience , I am refusing to have my thyroid removed or destroyed. I don’t want to become hypo.

No, hearing about that side of things I wouldn't either unless it was life threatening, but I agree, don't go there if you don't want it!

Redlester
Redlester in reply to BrynGlas

Sometimes watching the news I could weep when I see the money being frittered away on stuff that, when push comes to shove, isn't "strictly necessary" and would come into the category of "luxury" to be spent only after, for example, those needing thyroid treatment in this county had been diagnosed [properly!] and received it. Those people [mostly women] would then be able to make productive contribution [working - paying taxes, volunteering etc etc] and wouldn't be a drain on the NHs receiving treatment which won't help them because their underlying condition isn't being diagnosed or addressed. But it is about more than just money - it goes right to the heart of how you diagnose and treat and to do that we would need to turn on its head the thrall of the TSH test alone which GPs have been brainwashed into believing is the only test that is needed for TFT testing, not knowing the myriad reasons why a "normal" THS may hide a real thyroid malfunction problem and sadly the reliance on TSH is promulgated by big phama - so not sure how you get round that one. Not wanting to be sexist but I would imagine if these issues were impacting men they'd be sorted out fairly quickly. And in answer to your question - no, I don't think we are living in a civilised country, and haven't done so for quite some time.

(BTW Apologies to CanI HaveYourJuiceBox for seemingly 'hijacking' what was her 'hyper' thread)

BrynGlas
BrynGlas in reply to Redlester

I would like to hear of some MP's getting thyroid problems of one sort or another, but they would be very unlikely to be seen by a common or garden GP and treated by the idiot rules that most of us are having to be treated by. I could wish all sorts on whoever decided to use TSH levels to diagnose a hypothyroid patient and they would all be very painful!

Redlester
Redlester in reply to BrynGlas

But you see that's the thing - if one of them gets hit with the health problems we have they are in the "important people club" they share with each other the "right man" to go to privately and quickly get back on their feet - do you really think they would be relying on the NHS to fix them???even labour MPs??? sorry for my cynicism but i'd imagine I'm not far wrong in thinking that that is how it works.

Lora7again
Lora7again in reply to Redlester

You are right Michael Gove's wife Sarah Vine is prescribed NDT and doesn't have to buy it from Thailand like a lot of people have to do.

Redlester
Redlester in reply to Lora7again

yes, well cited, I have read her articles in the print media - but she presents herself as the same as the other thyroid sufferers in the UK as if we are all in the same boat when it would appear that we are not.

Lora7again
Lora7again in reply to Redlester

I tweeted to her on twitter about it and she ignored me.

Good shout. I’ve tweeted her too.

Redlester
Redlester in reply to Lora7again

yep, because she is "all sorted" and isn't concerned about helping the rest of the sisterhood like we are on this forum.

BrynGlas
BrynGlas in reply to Lora7again

Might she then - or even her husband, Mr Gove - be a someone who one of us could try to contact? I was thinking of trying the Mail myself at some point, but I didn't know that Sarah Vine had hypothyroiism then, I feel as though something is nudging me in a particular direction now!!! LoL

Lora7again
Lora7again in reply to BrynGlas

I don't think they will be at all interested. I joined the party to get close to my MP and she did write a letter to Matt Hancock and he got one of his minions to answer it. It was a complete waste of my time. I have now decided not to renew my membership because they have made a right shambles of covid as well.

BrynGlas
BrynGlas in reply to Redlester

Well, yes, that is really the way that I thought it would happen. I couldn't see any these sorts of people having to hunt on the Internet to find something or other different from Levothyroxine to make them feel better! That is exactly how I could see it happening, probably in one of the bars in Westminster to start I would think. When we know how high the level of Thyroid probs are these days and the number of the higher echelon who are 'employed' in Westminster, it would be a flipping miracle if there were zero hyper or hypothyroid patients working there.

Ie1658
Ie1658 in reply to BrynGlas

You are right, NHS is treating us as unwanted idiots.

But this is going on as long as I know.

I agree. It took for me to stop taking my meds and almost be admitted to hospital for them to listen to me. They made me hypo with carbimazole but wouldn’t listen.

BrynGlas
BrynGlas in reply to Ie1658

Yes I know but surely we could get on with doing what we have to to survive The B thyroid problems while trying to come up with a way, or ways to bring this to the attention of the general public??

I have no idea what to do or how to do it, but I would be very willing to help if anyone has any ideas???????

JMTS
JMTS in reply to BrynGlas

You are spot on BrynGlas - great advice for vps1980 -

Exactly the same thing happened to me my GP was away when it happened I will never forget the Palpitations in the middle of the night so I went to another doctor in the same clinic and she gave me some tablets and i was still the same two days later so I went back to her and she sent me to a heart specialist next thing I was having a pace maker installed at a Melbourne Hospital. I call it the waiting game out here looks like it is the same in the UK. It doesn't hurt to say that you have sent a copy of your letter to the Health minister and one to your local member. Can you imagine the people out there that don't say anything as they are frightened of reprecussion especially in smaller towns or villages. Hope all goes well for you. Keep well.

BrynGlas
BrynGlas in reply to JMTS

Aah thank you JMTS, if you come up with any good ideas let me know. But I don't fancy chaining myself to the railings of Buckingham Palace for anyone and I can't climb to the roof of the same Palace a la Brian May!! LoL Anyway I can play the guitar better than him - but don't tell him I said so!

Are you an expert on Graves' disease? I am just asking because after 10 years of reading about it and being a member of numerous sites in the US and here I certainly don't know everything. Elaine Moore has helped me a lot over the years and she isn't an expert but she has had it a long longer than me and has wrote books and runs a support site for other sufferers. None of us are medically trained on this site but I do have some knowledge about the NHS because I worked for them for a number of years as did my husband.

I didn’t say anywhere that I was an expert. I just asked if Vps1980 had any questions. But since you’ve asked , I’m a registered veterinary nurse with a science degree. I also work for the NHS as well.

Could you add some history to your profile including some of your results because that would be helpful to members.

Why ?

It would be helpful to others who have Graves' but if you don't want to fair enough. You can read mine on my profile page if you are interested.

That’s fair enough. Sorry , I mistook what you said. I’m currently waiting for blood results as I hadn’t had a test since March (thanks Covid). My T4 levels in March were 12.4 , TSH completely undetectable. Antibodies still at a whopping 91.

Do you have the ranges for the T4? You should join Elaine Moore's site she has been a great help to me and lots of others who have Graves' Also they should be testing your T3 as well as your T4.

Reference range for T4 is 12-22mmol/L. I started off back in April 2019 at 66mol/L. I was at 12mmol when on 15mg carbimazole but felt awful. I went the other way. They put me on 10mg, went up to 17 which I was happy with. They weren’t - got bumped back up to 15mg. Had my blood test yesterday so just awaiting results. The reference range for TS antibodies is > 1.98 confirms Graves Disease. I’m currently at 91.

They should be testing your T3 as well as your T4. What was your T3 when you were first diagnosed?

OMG it makes me want to lose the will to live. This is so damned wrong, we are in the 21st century and we get this, as well as no free subscriptions?

I don't understand this at all.

BrynGlas
BrynGlas in reply to Lora7again

Where do we find Elaine's site please? I am hypo though, not hyper.

Lora7again
Lora7again in reply to Vps1980

Have a look at Elaine Moore's site it is full of useful information.

elaine-moore.com/

BrynGlas
BrynGlas in reply to Vps1980

Sorry to hear that, but if you can get help anywhere it is here. I am hypothyroid so my help would be no use to you! Good luck.

One small point, in your petition details you have put hypoparathyroidism, did you mean hypothyroidism ?! the two are entirely different problems and not connected !

The government petition people reworded it. I just put hypothyroidism but they changed it. Hypothyroidism is on the Medex list too , under myxedema.

I think you should get it changed so the wording is accurate.

It’s ok. Hypopara is on the list too so it’s factually correct. I don’t think they’ll change it.

Hmm, I am not sure that if it went through they would not allow hyperthyroid patients to get it as well. The law is an ass as we all now. They gave it to hypothyroid patients at some point before and not to hyperthyroid patients, so I would not be surprised to see it happen again.

Sorry to be a wet blanket, but are they aware that the 2 illnesses are totally different?

Yes, I have had free prescriptions for other reasons since the 80's, when I lived in England which is why I am so angry for hyper patients!

I moved to Wales mid 90's was told when I was diagnosed low, in the late 90's that scripts would be free now, but I wasn't paying for them anyway. In 2007 all prescriptions were made free in Wales.

Might be a good idea to ask them to change the wording in the petition, or it might turn around and bite you somewhere down the line and technically as the two are separate issues- as is hypothyroid for instance, they gave it to hypo patients, but not hyperthyroid or hypoparathyroid patients, might be best to put both illnesses in there???

I know nothing of hypoparathyroid whatsoever I'm afraid, all life threatening are they? Equally serious?

They gave it to hypoparathyroidism patients too. It’s literally just hyperthyroidism that isn’t on the list. It’s a travesty. I will contact them however.

Done. Good luck with your cause.

Thank you :) please feel free to share it if you can.

what is the Medex ??

It’s the medical exemption list for free prescriptions

oh i see, i wondered as i live in scotland and we all get free prescriptions and thought it was perhaps for exemption from wearing a mask. Thanks for the explanation

Have a look at Elaine Moore's site it is full of useful information about Graves' she has helped a lot of people over the years. She had RAI and then regretted it so started a support site for sufferers.

elaine-moore.com/

Signed: I have hypothyroidism, diagnosed in 1998 & I realise how lucky I am not having to pay for prescriptions. I’m quite shocked to discover that hyperthyroidism doesn’t get the same benefits.

Good luck with the petition.

Thank you. Please share if you can so we can get more signatures.

I’m hypo but I agree it should be on the list. I’m surprised it’s not. Signed. Good luck with it x

Thank you for supporting us hyper folk :) please share the petition if you can.

i will do x

Signed - good luck

Thank you. Please share if you can. We need all the signatures we can get x

Duly signed. Best wishes!

Thank you ! I used to live near the Mourne mountains (Dundalk). Went to college at DkIT. Small world !

Please share the petition if possible:)

Done. I’m lucky as I am exempt for other medical conditions and age (not so lucky!). I’m also hyper

Thanks ! Feel free to share the petition. It’s going to be a slog to get to 10k signatures

I’m sure 🤞🏻🤞🏻you’ll do it. Good luck. Unfortunately my friends with thyroid problems are hypo

You’d be surprised ! I have a few hypo friends and they didn’t realise we didn’t get free prescriptions.

BrynGlas
BrynGlas in reply to APAscot

I am hypo too but we don't need to be hyper to want hyper patients to have free prescriptions. People with epilepsy have free scripts too, I thought that everyone suffering from life long illnesses were given free prescriptions.

I am truly appalled to find that they aren't.

Maybe we should all put it onto our social accounts, anyone at all can sign it, not just hyper or hypothyroid patients. I can't help worrying about the fact that they have put the name of the wrong illness onto the petition. ;-(

APAscot
APAscot in reply to BrynGlas

When I was put on my anti epilepsy drugs I was told I would get free prescriptions as it was a lifelong illness so I was very surprised as well to learn hyperthyroidism didn’t come into that category.

BrynGlas
BrynGlas in reply to APAscot

Exactly so! I find it very difficult to understand why all lifelong illnesses, where patients need medication for life don't get free prescriptions!!! I feel a letter to a National newspaper coming on, what do you think?

All contact our MP via email?

Very easy to do these days and might stir the pot a bit. This is discrimination plain and simple.

Lora7again
Lora7again in reply to BrynGlas

I do see what you are getting at but I will be very surprised if anything changes. You remember my letter I got about NHS guidelines from my MP? I think the NHS and the government don't really care about thyroid patients and now the coronavirus has taken up all the resources we will be even more ignored. Sorry to be negative but that is my opinion.

Let’s make them care. Excuse my language but they can go fk themselves. Share the bejaysus out of the petition , write to your MP and newspapers ! I have emailed my MP today.

Good luck

Here is my thread.

healthunlocked.com/thyroidu...

Great, I would ask my MP, but because his patch is in North Wales and we all have free prescriptions here we might be on a hiding to nowhere. Plus I watched out for him in hundreds of Prime Ministers Question times and never seen the there yet. I think he is a complete pain of a man who doesn't seem to do a lot at all, except to put a note in to the local rag, which is a pain to read, sorry, but you can PM me anytime if I can help in any other way.

Good for you, I will help in any way Cani (your name is far too long for my little fingers!

You can call me Laura

BrynGlas
BrynGlas in reply to Lora7again

It is nothing to do with right now or Covid though, it has being going on since they brought in Levo and did away more or less with NDT. Cheap synthetic medication. Only it is the patients who need Levo to stay alive who are being the piggy in the middle

Someone cocked up the T3 supply - as well as other drug supplies no doubt. The Swiss company began raising the prices and the powers that be seem to have been unable to stop the rising prices, or apparently find a new supplier.

That seems to me to be similar to me taking out a new account with BT for telecoms and they promptly start upping the price and I would not be able to afford to buy myself out of the contract. That is why I am wondering if it was an iffy deal because we seem to be unable to get out of this mess.

No doubt it is not quite the same, but if this company will not let us go elsewhere for these particular meds it sounds like a dodgy contract to me.

This has been going on for a very long time . There was a High Court case apparently 2016 ish in date I have it in my notes somewhere, sorry my memory fails me very often these days. It was in one of the big nationals apparently and I found another titchy bit about exactly the same thing a couple of weeks ago in the Mail!

I thought that that was odd, because they were repeating the same old story. the cost of T3 only a but I did think that it could be in there so recently. I thought could be because, there could be another court hearing soon. I so hope I'm right because apparently a month's supply of Levothyroxine, costs hundreds of GB £'s for a single pack of Levo, (T4) Go on Ebay and have a look, I nearly fell off my chair when I looked on there for Levothyroxine.

They tried to tell me it was my galloping menopause causing weight gain and low temperature, but it was the need for thyroxine T4 which was making me ill. And though Covid is a pain and we know it is going to be with us for a long, long time, but hypothyroid and hyperthiroidism will be here for much longer I would think and the number of people who have dodgy thyroids one way or another is rising rapidly too.

Lora7again
Lora7again in reply to BrynGlas

I know how cheap Levothyroxine is to buy on line but I'm afraid big pharma is very powerful. I know this because I used to work in a hospital pharmacy ordering the drugs for the hospital.

BrynGlas
BrynGlas in reply to Lora7again

Yes I understand that, but how has it easily got away with upping the price so? I think they do have a bit of a lean on with the Goverment surely though?

I understand that there was a court case in about 2016 - though I may be remembering the year wrong???? ;-( When I saw that titchy note in The Mail last week I hoped that they were going in for another go, but will we ever know? I was talking to someone a couple of weeks ago who is very much into this very thing. She could tell me about it, though my memory won't remember it all as usual!

I wish I had gone into Law maybed I what would be able to read and understand for myself how on earth we got into this mess. None of us will be able to buy T3 or any other thyroid meds anymore if this carries on, God forbid

Redlester
Redlester in reply to BrynGlas

Considering I can buy a year's supply of T3 for under £120 why can't the NHs manage it????????

JMTS
JMTS in reply to BrynGlas

I noticed where you said the tablets were making you ill - I would like to know your symptoms - as I have been ill on and off for many years it all started when they started making the synthetic drugs which by the way are made in Asian countries

I know two doctors that have been to see where they are made they were not very impressed - It is interesting the chemists try to force the synthetic drugs onto their customers as they make big money on them. I totally refused them at one stage I was getting them made at a compounding Chemist thinking they were natural but apparently all ingredients are synthetic no wonder there is so many people sick.

Tku.

BrynGlas
BrynGlas in reply to Lora7again

Well if enough of us get on our high horses and make a noise then we might at least get it better known. I have been hypo for over 20 years and I wasn't aware of any of this and I also know a few people who had no idea what hypo or hyperthyroid is.

We are all upset and appalled by all of this, but that's because we have searched and found other people in the same predicament (sp?) who we can share any knowledge that we need about these thyroid issues. We need to be noisy surely, so that we can get this to a wider audience. On Facebook, Twitter etc etc we all deserve more thatcwhat we have been given,

Take to Twitter !! #gravesdisease #hyperthyroidism

Lora7again
Lora7again in reply to BrynGlas

That is what people have already been doing but nothing has changed. The NHS needs to change the guidelines and stop going by the TSH all the time but I cannot see them changing it because it works for them. This is just not a problem in this country it is going on in the US. I didn't realise until I joined some support sites in the US how widespread this was. To be honest I wasn't interested in thyroid disease until I started suffering with it myself and I don't think other people will be either. If I start talking about it with my family I can see their eyes start to glaze over because they are bored of listening to me droning on about my goiter etc.

Please do share it across all your social media platforms. Maybe put it in the post that hypothyroidism suffers and hypoparathyroidism suffers receive free prescriptions. Sadly the government get the final say on the petition wording. It was them that changed it.

Keep a note of it CIHYJB, have you any emails or snailmail documents from when they said that to you? If so keep them safe, though I am sure that you have enough sense to do that, sorry! LoL I would love to have a day in court I really do.

There’s enough people in this sub to get the petition to parliament. Even if half of the sub signed. Please please support this petition !

Have done

I’ve managed to get 387 signatures in 6 days. This is possible. We can do it.

I hadn't realised Hyper people have to pay, that's very unfair.

Signed and shared.

Good luck!

Thank you for your support :)

Signed

Thank you. Please share if you can :)

I thought it would have been on the exemption list! That is disgraceful, I will definately sign!

Signed

Thank you. Please share the petition!

I have been struggling now for more than 10 years, is there anywhere I can share this to try to get more signatures?

Please share to all your family and friends. You can share it as a post on Facebook too :)

I have shared it to my fb and just about to tweet it :)

Brilliant. Share it to individuals too! Be shameless with it x

Signed

Thank you ! Please share if you can. :) it’s today jr to be a slog to get the required signatures

Sorry , typo

I'll share via FB and as many people I can who aren't on FB, hopefully you'll get to the magic number

Signed it 👍

Thank you :) please share if possible ! Let’s raise awareness for this illness.

I’ve just forwarded it on Twitter , I agree with you

Signed.

Thanks. Please share !

Signed too. Good luck in gettin enough signatures.

I am hypo now but I was hyper for years on and off I remember one GP thinking that I would get free prescriptions as a hyper patient as he was aware that hypo you were eligible to free prescriptions but obviously that wasn't the case!

This need changing.....you just wonder why thyroid disease is not recognised as a serious disease by so many.

Thank you for trying to raising awareness of this life changing horrible illness.

Many thanks 🤒🤕🤒🤕

I’ve experienced the same thing. I was told by two pharmacists that I’d be eligible , all to be told that I wasn’t. Please share this petition if you can so it can get more signatures. :)

helvella
helvellaAdministrator

This is meant to help those to whom it applies. It is absolutely not meant to undermine the petition.

The Medex list actually words the condition which qualifies for exemption:

myxoedema (that is, hypothyroidism which needs thyroid hormone replacement)

For those on block and replace, it is at least arguable that they fall into this group. The hypothyroidism probably should be classified as "iatrogenic", rather than the direct result of a disorder. But the patient needs thyroid hormone replacement regardless the cause.

Iatrogenic is used for something that results from the direct (or indirect) actions of physicians, surgeons, or other caregivers, e.g. nurses 1.

It is usually used in the context of describing a possible cause of a finding/diagnosis. Anything caused by any form of diagnostic test or treatment (including medication, radiotherapy and surgery) may be described as iatrogenic, e.g. a pneumothorax occurring as a sequela of thoracentesis could be described as iatrogenic.

radiopaedia.org/articles/ia...

I’ve only been receiving block therapy. Most people I’ve spoken to that have Graves (and are being medically managed like myself ), have only been receiving block therapy. It would be nice for the government to recognise this as a lifelong disease , particularly for those of us that do not want to be forced into being hypo. If I had my thyroid removed/radiated and put on even more weight , my mental health would sky dive. I’ve told my endo this. I’m fairly under control on the carbimazole. I’ve been told I won’t achieve remission. If it ain’t broke and all that !

helvella
helvellaAdministrator in reply to CanIHaveYourJuiceBox

The government has been very unwilling to make any changes over the years.

The rules about cancer are about the only change I can think of.

There is no fundamental logical basis for the exemption list. Might have looked sensible when it was first devised, but less and less each year.

The government need to realise that one little levo pill isn’t going to fix us. We still have the Graves antibodies regardless of whether we have a functioning thyroid. We get pushed into being hypo and it’s unacceptable. That’s a slightly different story. I would really appreciate if you signed the petition though .

helvella
helvellaAdministrator in reply to CanIHaveYourJuiceBox

As I see it, those who become hypothyroid due to treatment for Grave's (or any other cause of hyperthyrodism, cancer, etc.) end up in the same levothyroxine monotherapy desert as those who go straight there. Appalling for all.

(Signed almost two days ago.)

I am so grateful for this group. I think I would’ve opted for RAI by now without it.

BrynGlas
BrynGlas in reply to helvella

Too true helvellyn!

Hello, I've just signed the petition.I was diagnosed with graves in 2018.I started on carbimazol only but my levels were all over.I then tried block and replace but after only being off it for two weeks I've had to start carbimazol again as my ft4 has gone up to 63.When I started on levothyroxine everyone said my prescriptions would be free but then I found out they are only free if you take levothyroxine for UNDER active thyroid not OVER.Even the chemist assistant can't understand why I have to pay when I take thyroxine.I have to buy a prescription prepayment certificate every 3 months as I also take amitriptaline to prevent migraine.My graves disease has affected my eyes and at the moment I feel terrible, sweating, no energy,legs like jelly,aching all over.It's certainly not a minor illness and can cause major damage to health if not treated.

It’s a total travesty ! Please ask for a referral to an ophthalmologist for your eyes. My endo advised me to use two different eye drops (more expense - yay).

Please share the petition far and wide to raise some awareness.

signed it!

Thank you ! If you can think of any relevant groups to share it to, please do.

520 signatures now ! Please sign if you haven’t done so already :) and share to your family and friends. Let’s raise awareness for hyperthyroidism and Graves

Hi, I have signed your petition.I did not realise Hyperthyroidism was not on the medical exemption list, as I am hypo. Good luck on your campaign.

Thank you for your support. It’s really appreciated

The petition seems to have stalled a bit now. If you haven’t signed yet , please do and help us hyper folk out :) thanks

Signed

Thank you. Please share it far and wide !

Signed. Total of signatures 575

Thanks for signing. Please share :)

Just an update - Thyroid UK have shared our petition. I’m calling it our petition because this is for everyone struggling. I’m so happy. Let’s do this

Oh wow!!! What a great almost end of the day result is that!!! Well done you!

Thanks :) I am waiting for two other big players to get back to me. Just so happens it’s thyroid awareness week. The perfect excuse really.

OMG I haven't been so pleased for a very long time!

Still a massive way to go. I’m tweeting as many people as I can, shared to my local MP, and any relevant groups I can think of. The last petition got to 710 signatures. We are at that now after 10 days !

Keep on signing and sharing folks ! We have 100k members in this group yet only 770 signatures. It’s thyroid awareness week. It’s the perfect excuse to get this petition going

Things are slowing down a bit now. Only on 868 signatures. Please sign if you haven’t already and share to as many as possible

Done! Thank you for highlighting this issue CanIHaveYourJuiceBox.

Thanks for signing ! Please share it to people you know if you can :) the petition has started to slow down

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