Morning all
My friend and I were having a conversation last night about Underactive Thyroid as we both suffer from it. We got onto the subject of free prescriptions. I said that it concerns me as to why we get them free when people with maybe more serious conditions don't! Is an Underactive Thyroid more serious than it's portrayed to be by Doctors? Would love to hear others views on this.
What is more serious than an illness that, if untreated, leads to a long, slow, lingering death? Before treatment, people talked about it taking an average of about 12 years.
That is 12 years of being less and less able to keep warm. Of constipation. Of muscle weakness and pain. Of inability to properly digest and absorb adequate nutrients from even a good diet. Of excess sleep. Over the years, it becomes progressively less and less likely that someone suffering would be employed, or employable. And I daren't even start to think about the mental anguish for the sufferer and their family and friends.
There are many diseases that result in death. It is very difficult to draw a line saying one deserves "free" medicines and another doesn't. I won't go down that line, just assert that hypothyroidism is definitely extremely serious.
Please note: In terms of the UK's NHS, this "free" prescriptions issue is only relevant in England.
Also, though the cost is an important issue, if you know you will need more than 12 prescriptions a year (for anything) and do not qualify for "free" prescriptions, you can buy a pre-payment certificate. So the maximum cost for many would be £104 a year.
If you need more than 12 prescribed medicines each year, you could save money with a 12-month PPC.
You can also buy a three-month PPC, which will save you money if you need more than three prescribed medicines in three months.
The charge for a single prescribed medicine is £8.40, whereas a three-month PPC will cost you £29.10 and a 12-month PPC £104.00.
The range of conditons was fairly recently broadened to include cancer:
You can get all your NHS prescriptions free if you have a valid medical exemption certificate because you have:
a permanent fistula (for example, caecostomy, colostomy, laryngos-tomy or ileostomy) which needs continuous surgical dressing or an appliance;
a form of hypoadrenalism (for example, Addison’s Disease) for which specific substitution therapy is essential;
diabetes insipidus and other forms of hypopituitarism;
diabetes mellitus, except where treatment is by diet alone;
hypoparathyroidism;
myasthenia gravis;
myxoedema (that is, hypothyroidism which needs thyroid hormone replacement);
epilepsy which needs continuous anticonvulsive therapy;
a continuing physical disability which means you cannot go out without the help of another person; or
cancer and are undergoing treatment for:
- cancer;
- the effects of cancer; or,
- the effects of cancer treatment.
You can only get a certificate if you have a condition on the list. If you are not sure about the name of your condition, check with your doctor. Doctors may advise you about free prescriptions. However, it is up to you to find out if you are entitled to an exemption certificate.
nhsbsa.nhs.uk/HealthCosts/1...
Thank you for your very detailed response hellvella! Precisely my point so why don't the medics treat it more seriously instead of fobbing us off! I agree it is a blessing that we get prescriptions. I hope and pray that it never stops. But what I don't understand is why it seems to be treated by most GPS as some kind of a Cinderella illness when it is truly horrific and debilitating disease which most people who have never had it or know someone who have had it have never heard of it! Just makes me angry!
Quite probably because of the perception across the medical establishment that hypothyoidism can be treated with a little white pill every day. It is simple. It is a solved issue.
However misplaced this belief. However much research (thank you, diogenes and many others) shows this to be untrue. And, most importantly, however many sufferers document and try to explain their ongoing issues.
(Hypothyroidism is also very lacking in any of the glamour that accrues to heart and brain surgeons, obstetrics and fertility, even bariatrics and cosmetic plastic surgery.)
So true Helvella thank you for your response.
Dear Helvella,
Well said! Thank you for your post.
Best regards
Kitten
I sometimes wonder how it must have been for hypothyroid people when there was no medication available. I don't know what must have been worse: the prospect of inevitable death or the fact that it was such slow and painful, both mentally and physically, process. It makes me shiver ;(
Kitten1978
I presume it accounts for some of mad women locked up in the attic and others committed to asylums, to die a horrible death. I had overt hypothyroidism and ended up with hideous nightmares and hallucinations, insomnia, bouts of insanity and raging interspersed with uncontrollable weeping. I scratched my legs until the bled they itched so much and I became so cold I thought I would freeze to death - it was very very horrible with a lot more hideous symptoms than the above.. Luckily I got medication in the nick of time just before Christmas thanks to my then GP phoning me to say I must start it as soon as possible and impressing on me not to leave it till after Xmas. I don't think I'd have lasted much longer. I shudder to think of the many who went before me, suffering this hell before dying, prior to any treatment being available.
I fear you are right: many must have died horrible death labelled as "mad" or they ended their lives through suicide ;( What scares me even more is that I suspect this is still happening, just less frequently. Given the problems with getting diagnosis that many of us have experienced, doctors' incompetence and the lack of appropriate treatment for people who don't respond well to levo, I'm afraid many people still end up being laballed as having "mental health problems" or "medically unexplained illness" and eventually dying or committing suicide. I had depression, severe anxiety, panic attacks that lasted for hours, severe insomnia...I'm still not well as having difficulty increasing T3 meds but I'm much better than a year ago. I also wouldn't have lasted much longer. It's scary!
Kitten1978
Well that reads just like my story with It. Labelled as a mentally ill hypochondriac I believed this myself after telling doctor after doctor there was thyroid disorder in the family and might it be related - just poo pooed and no tests done with the exception of one which came back "normal" so this made me dismiss what was patently obvious with the cluster of highly diagnostic symptoms I was displaying. Another 10 years of degeneration ensued and copious prescriptions for antidepressants and endless tests for this problem and that problem, I developed shingles of the optic nerve which was simply awful so I was not imagining that or the piles that were cauterised and the ileum not working properly or the chronic cramps in my feet and legs - have some quinine .....I am sure I was within days or less of death by the time a got a doctor who actually listened and ran the tests and started treatment In the nick of time. I remember just laying in that bed so cold it was indescribably horrendous and thinking "I've had it" two of my whippets (both sadly gone now little darlings RIP) were on top of me keeping me as warm as they could and I remember in the delerium having one sensible thought - hoping they'd have the common sense to snack on me if I died! I was only given a 25mcg daily dose cos of the terrible heart pains I suffered (investigated at a top heart hospital the problems with the chamber/s I was told were just hormonal something women get and i was discharged) and I had yoyoed from hyper to hypo in the final thoes of the illness. I had only taken one tablet and was surprized to wake up the next day feeling slightly warmer (still freezing cold tho) whippets still cuddled up close. I spoke with a friend later on who was a geriatric nurse who told me I was very lucky to have survived. I wonder how many never get treatment and die of this disorder I can't be the only one to stare the jaws of death in the face and I had a family history of it so had half an idea of what it might be but that genetic predisposition was simply ignored. I had no goitres but just about every other symptom. I wonder if the medical profession assume you must have a goitre to have the illness. Mind you no one ever bothered to inspect my neck. I see that tv doc is doing a thyroid sit tonight I had thought about suggesting he do a programe about it with our side and suffering made plain. There is no email you have to do some kind of form to him perhaps we ought to bombard him with requests - you never know it has all the horrors of a gripping tale
One thing that was odd for years I had a voice telling me I was dying It would just say "you're dying" like an internal thing. It started around the time all the symptoms began to build and continued until I was treated then stopped. I just though I was crazy or everyone got this sort of thing but never talked about it. In fact I have never told anyone till now. I wonder if others got it I presume your body and brain must know things are wrong and will try and communicate this with you as a survival mechanism.
Glad you are making a recovery it took me about 3 years as the two on Levo were not very good NDT has really helped me.
“Mentally ill” (and attention seeking) and “hypochondriac” or “a person presenting with medically unexplained illness” is what we are labelled as when medics are clueless about what is wrong with us. Long gone are the times when they had the time and motivation to take genuine interest in their patients. Compartmentalisation of medical science is also to blame: they all specialise in “something”, anything but a systemic illness which presents with variety of symptoms and needs to be seen holistically.
I was very healthy until I started presenting with hypo symptoms after a particularly bad sinusitis. I was symptomatic for a year before I was diagnosed. It took me 8 months to find thyroid hormone I could take (T3) as I cannot take any T4. I cannot imagine being so ill for 10 long years, as you did ;( That GP who listened saved your life. Shame it happened after 10 years of suffering. Untreated hypothyroidism is a slow death: our bodies simply don’t have enough energy to keep us alive. My body also knew something was wrong: I became very distressed; I was anxious, had panic attacks and could not sleep. It was awful but, in a way, it was also survival mechanism. The anxiety was so unbearable I had to seek help, read, research and try to find what was wrong. I couldn’t bear feeling like that. Nobody ever should have gone through what we have been through.
It’s very brave of you to consider talking about your experiences on TV!!! It might be a good idea to put this into a separate post and see whether other people would be willing to join you. I no longer live in the UK, hence I couldn’t take part ;( but I agree it should be done. Hypothyroidism is increasingly common but it’s not really spoken about. I was taught in biology lessons at school that Hashimoto affected metabolism. That’s it. I didn’t know anything else about it until I got it. It never occurred to me that it caused depression, anxiety, extreme fatigue +++++ other symptoms and eventually early death. If the general public knew more about it perhaps more lives could be saved. I’m glad you’ve made it ;)))
Take care xx
Kitten
I seem to recall reading that a list was formed on a date years ago and many serious conditions that were not on the list or came to the fore later are not included so a date lottery.Asthma can kill but does not get you free prescriptions.
According to Wikipedia (yeah, I know, pinch of salt) the date was 1968, and it was a list of conditions for which life-saving medicines were available.
My GP said it's such an important medication it must not be missed under any circumstances. That's why it's free - so anyone who can't afford the prescription charge won't go without their medication.
What doesn't make sense is why our excemption card covers all our OTHER prescriptions too? Why doesn't it just apply to our thyroid meds?
The list on the form I filled out covered cancer and diabetes amongst other serious conditions.
Interesting point MichelleBerko . Thank you for your response.
The same logic would suggest that cancer, diabetes and others who are elgibile should only get the directly related medicines without charge.
Trouble is, in so many cases, there is already a major financial impact of the disease itself. It is also next to impossible to identify which other medicines are due to the qualifying disease. For example (in the view of some medics), high cholesterol needs to be treated with statins, but in our view high cholesterol is often attributed to hypothyroidism. Should statins be charged or exampted?
When my other half was treated for throat cancer in 2012 all pharmacy drugs prescribed by the ENT team were FOC from the hospital pharmacy when he went for his check-ups. Then he was given a prescription exemption card for when he was handed back to his GP who would be supervising his day-to-day care. This included pain killers, stuff to help the inevitable constipation cause by the painkillers, special fortified drinks for when he couldn't eat solid food and a whole raft of stuff that would have cost a fortune in prescription charges which was greatly appreciated as he couldn't work and I stopped work to look after him and my late mother who was being ravaged by dementia and lived over a 100 miles away. A fun time it was not!
Then I was diagnosed with Hashi and I'm so greatful for the prescription exemption (even though I'm 1 year away of prescription exemption anyway). Not only is it to make sure we always get our pills but other conditions can rear their heads too that need treating.....the curse of autoimmune conditions can have a bit of a pyramid effect.
Thank you for your response spongecat . Sorry to hear that you had such an awful time. I hope things have got a little easier for you now. Yes I agree it's a real blessing that we get our meds freex
Aww, thank you.
Hubby is in fine fettle. We are hoping he will get an official "in remission" in a couple of months or so on his 5 year anniversary from diagnosis. 
As for my lovely mum, she has gone to a better place. Bless her!
I'd actually swap my free prescriptions for proper testing. T s h, ft4, ft3, ferritin, b12, folate, vitamin d once every six months. Apparently levo is very cheap no more than a couple of quid a packet cost price.
Ain't going to happen though!
foreversummer to get proper treatment and by Doctors who know better.
I'd like to know why people with hyperactive thyroid conditions DON'T get free prescriptions?They are also debilitating and life threatening. I am currently on Carbimazole AND Thyroxine (block and replace) for Graves Disease but have to pay prescription charges for both.
SassC and Agapanthus ,
I think it depends on interpretation of the regulations.
If you consider the impact of carbimazole (or propylthiouracil) to be the causing of hypothyroidism, and that hypothyroidism requires treatment with thyroid hormone, it is at least arguable that the person should be entitled to be exempt. After all, the regulation isn't worded as:
myxoedema (that is, hypothyroidism which needs thyroid hormone replacement) [except when it iatrogenic (caused by a doctor)];
If I were you, I'd certainly consider going through whatever processes there are to get the decision to go your way.
Then we see the line drawn between those who are on block and replace and the others on titrated dosing of carbimazole... I'm not going to wade into that crocodile swamp.
I was about to put the same comment SassC. I do remember my sister in law being infuriated that she had to pay for her Carbimazole whereas I got my thyroid meds for free.
I think the reasoning behind hyperthyroidism and no free prescriptions is that hyperthyroidism has a chance of going into remission or that you end up having RAI or a thyroidectomy and then you will go hypo.....and then you will get the free 'scripts.
I am really hoping to avoid thyroidectomy if possible. This is my second round of treatment. I used the triation method first time round and went into remission for a year and a half. My relapse gave me much more dramatic symptoms than when I was first diagnosed. My endo was supportive of me giving the drugs a second go. I should stop them in a couple of months so fingers crossed I go into remission again. In the meantime I am doing all I can to help myself - with thoughtful eating, exercise and reducing and managing the stress which triggered the Graves in the first place.
Gluten free
Free prescriptions 
Fermented Soy can we eat it?
Why is it hard to get diagnosed 
