hi just wanted to ask here if anyone knows if the uk classes a thyroid condition as an auto immune disease that warrants support and recognition? Wondered if there’s support financially or work wise etc for having a thyroid condition
I get the sense it’s palmed off as not a big deal, when it’s a life long condition
thanks
People officially diagnosed with hypothyroidism ( a lifelong condition) by an NHS GP are entitled to receive all their prescriptions (for anything at all, not just thyroid) for free. There is a form that has to be signed by the GP to start receiving free prescriptions, but I can't remember what has to be done with the form, sorry. I think the form has to be renewed every three (?) or five (?) years.
For some reason this does not apply to treatment and prescriptions for hyperthyroidism, which always strikes me as being unfair.
There are some odd anomalies when it comes to what is covered under medical exemption. Before Levo I had to pay for my asthma meds. Whereas epilepsy ones were free, at least at the the time. Now asthma can be life threatening, so why is it not covered? Insulin and other diabetes drugs are free. But many other very potentially serious conditions are not.
Only in England!
The number of paid prescriptions is much smaller than many think. Largely due to age bands (young and old), being in full time education, etc.
And epilepsy should have provided you with medical exemption for all medicines. Or none if not needing continuous therapy.
epilepsy which needs continuous anticonvulsive therapy
nhsbsa.nhs.uk/check-if-you-...
(I don't recall that this has changed in a long time. But I could be wrong.)
The logic behind exemptions is very obscure. I'd certainly add Pernicious Anaemia.
I'd add asthma especially if its severe. I have PA and get my jabs for free from GP. And my son has blood clotting issues and needs lifelong Warfarin, but has to pay.
So would I - but it had already been mentioned
The payment for B12 injections appears random. Some get them without charge, while others have had to pay the prescription charge for a single ampoule - even when injected in a GP surgery.
It appears that if the GP surgery maintains their own stock of B1§2 ampoules, used for all injections they provide, the patients might not be charged. But if they are individually prescribed (whether 1 or 5 or any other number), then there would usually be a prescription charge.
I didnt know that, genuinely thought if you got B12 jabs on NHS they were free, funnily enough my jabs appear on my repeat prescriptions but I've never had to order them as its been disabled. Makes me appreciate I'm lucky I still get them for free.
Forestgreen90,
Conventional medicines belief into treating autoimmunity is to suppress a heightened response through immunosuppressive drugs. These bring their own set of unwanted side effects and it is thought in the case of Hashimotos it doesn’t warrant these drugs and the autoimmune side is ignored and left to run its course.
This in spite of the thyroid gland being destroyed, and research evidencing unchecked thyroid autoimmunity can drive systemic inflammation inviting other unwanted conditions and further autoimmune disease.
When enough thyroid gland has been destroyed, Levothyroxine is prescribed to address the resulting thyroid hormone deficiency. Then to make matters worse many GP’s lack of knowledge and a focus beholden to TSH dosing dictates many patients are kept underdosed.
Now as the odd bit of research is proving the TSH to be a unreliable measure of thyroid hormone levels in some patients, and Levothyroxine to be an incomplete replacement for others, there still remains very few well informed endocrinologists.
Unless you’ve been ignored for years and are practically bed-ridden getting the correct diagnosis can be difficult as Hashis nature for thyroid hormones to fluctuate is completely misunderstood. The classic swollen lymphocyte glands, flu-like symptoms, fatigue and weight gain are either attributed to a virus or the patient said to be lazy, depressed with over-eating issues.
To complicate matters further there remains a reluctance towards comprehensive thyroid antibody testing and some Hashi forum members have been diagnosed with hyperthyroidism and even prescribed antithyroid meds usually reserved for Graves’ disease.
If you are ‘lucky enough’ to receive a correct diagnosis but are intolerant of Levo mono-therapy, it’s a postcode lottery as to whether you are allowed T3 meds, and if you are ‘lucky enough’ to receive a prescription that regains some wellbeing, you live in fear of it being suddenly withdrawn, or endos giving wrong T3 advice, and at times even prescribing incorrect or inappropriate T3 dosing setting patients up to fail.
And if you manage to acquire the correct diagnosis and an ongoing adequate prescription, thyroid hormone replacement meds require essential cofactors to ensure they work effectively in a holistic fashion. Conventional medicine is sceptical of these requirements, making patients beg to have ferritin, folate or vit D levels tested or for their B12 injections to continue. Whilst iron remains a vital component of good thyroid hormone function, hypothyroidism may drive low iron levels and yet GP’s may remain reluctant to treat an iron deficiency.
Some patients manage to do well on the standard thyroid care but for those who don’t there is very little offered alternatives, and we become forced to seek help from forums such as this, buy our own expensive meds on line, and post lab results here for the more experienced members to interpret.
We are all good members of society wanting to contribute positively but completely let down by medics in our moment of need. The whole shebang is a complete shambles of misinformation and manipulation on multiple layers, so bad you couldn’t make it up. Welcome to the thyroid world!
and yet GP’s may remain reluctant to treat an iron deficiency.
And often they won't even test for an iron deficiency, never mind treat one for more than about three months if you are lucky. They believe in haemoglobin from a Full Blood Count, and very occasionally ferritin gets measured. But if the patient has inflammation or an infection ferritin can be higher than it "ought" to be and gives a false message that iron levels are fine. So iron deficiency is not recognised even then. I am not aware of ever having had an iron panel done by an NHS GP in my entire life.
hb,
I think GP’s are reluctant to address iron issues because iron panels can be so tricky to interpret when thyroid issues complicate the pathways of erythropoiesis and Hashi’s chronic inflammation distorts lab results.
This is yet just another angle of the mistreatment of thyroid patients.
I wasn't helped with my iron or given an iron panel even before diagnosis of a thyroid problem. I had a GI bleed that went on for a long time, hence my obsession with iron. Eventually my GP did a ferritin test and it was 20 or 21. My GP thought that was fine and my pleading for iron supplements pissed her off. I remember the prescription she gave me being slammed on the desk in front of me while she scowled ferociously at me. Luckily for me it was the prescription I got from a pharmacist who told me I could buy them without a prescription which I had never known before. I've never discussed my iron with doctors since, and I test and treat my own iron.
Thank goodness you are able and educated enough to manage this care hb 🤗.
I think primary care should be more than jack-of-all -trade-GP's. There should be doctor/nurses trained in iron and autoimmune thyroid conditions, a bit like some surgeries have a diabetes, asthma or HRT 'specialist nurse'. GP's can not know everything and as secondary care is now difficult to access it is the patients who suffer from their knowledge deficits.
Well said Radd, as I always say welcome to the club no one wants to join.
My employer has allowed some small adjustments at work because of my Hashi’s and Hypo, I am able to take regular small breaks away from my desk and other things to mimimise stress which can flare up the condition. I told them when I started taking the medication and occupational health asked what I’d like to do.
As to the financial compensation - you can apply for PIP (Personal Independence Payment) which is the main benefit for people with chronic and debilitating conditions but unless you are completely house- and even 'better' bedbound you are very unlikely to get it as it heavily focuses on visible disabilities (i.e. lack of sight, hearing, mobility problems, learning diabilities etc) which definitely require assistance from others and things like 'mere' chronic fatugue, brain fog, mental health issues etc are ignored as long as you can move and do basic things unassisted.
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