Having just been told that I can not be referred to any other endocrinologist other than the two in my area, so have to see the idiot who thinks it's okay to slash away 20 mcgs of t3 and 50mcgs t4 overnight and had the most pointless and uncaring, not to mention negligent appointment with a GP, I am beginning to think that I have to go it alone. I am going to have to pay for medication that is right for me so I wonder what health insurance costs. I never thought I would ever consider it as I completely disagree with a two tier health care system, but I am at my wits end and just want an intelligent doctor to support me. If I am going to pay a grand a year in meds the NHS should provide I wonder what it would cost to have health insurance? Does anyone know or have experience of this.
If a private dr prescribes can you still get free scripts or do they have to be via an NHS prescription?
If I were in England I would be able to look for other gps and demand referral but I am in wales and there is only one other surgery I can go to. I will be going there, but their reputation is no better than my current one.
Does anyone have any experience of private health insurance? Is it like with dogs where they won't pay for a pre existing condition?
I hate the Welsh NHS, it breaks my heart to say it and I feel totally powerless and without any more options but to go it alone!
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sulamaye
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Sulamaye, I'm fairly certain that pre-existing conditions will be excluded unless you're able to join a group company scheme. It would probably be less expensive to pay for a private GP or endo consultation than to contribute to a group scheme. You would have to pay for private prescriptions unless your NHS GP agreed to prescribe the medication recommended by the private doctor.
Why must you spend £1,000 pa on meds? You get T4 on the NHS and if your GP won't prescribe T3 you can buy it very cheaply online.
Thanks Clutter I don't get much t4 anymore, no where near enough and I am thinking of going T3 only and as you know that price is going up. But more than anything I want to see an NHS based endocrinologist who treats me like an intelligent human being. I'd like a GP who did the same but I realise that's too much to ask in Ammanford!
Has anyone seen Colin Dayan privately at Cardiff university hospital or Bristol even? I just want someone to talk through the complexities of my health, someone who gives a darn unlike any gps locally who when you've written a letter saying how ill you are now as a result of the cut in meds doesn't even ask you how you are or offer you more t4 even though my tsh is now high!
Colin Dayan is a full supporter of the TSH and non NDT way!! You do not have to agree to lower your meds I have successfully challenged an endo. I was on 2 grains of Armour and he wanted to reduce it, I refused and using the 'broken record' method kept repeating that I was OK on 2 grains.
He even sneakily tried to reduce it by writing a prescription for 1 1/2 grains and I stormed his diabetes clinic and demanded he write a script for 2 grains as I had not agreed to the lowering of my meds - after which we had a running disagreement for weeks after which he backed down! This was after he had corrected my prescription however.
Clutter it costs about .86 p per T3 on the site I'm looking at so that could easily cost £1700 a year if you need 100mcgs of t3 a day even if you only use 60mcgs that's easily £1000.
I have private health insurance in the UK and I have a pre-existing back problem. I declared this at the time I was applying and they agreed to put in a moratorium clause that if I stayed treatment free for 2 yrs then I would then be covered. When I say treatment free, I was still taking painkillers but in the 2 yrs I had not seen a specialist. I have since had 2 surgeries covered by the insurance. I am not sure if a moratorium clause will be given for thyroid issues but if it is, it is worth getting.
As for medication, when I go see my endo, he gives me a note and I take it to my GP and he issues the prescription.
Thanks - private endo? I guess I'd still need a half human GP, but I can start looking for one asking if they will do that. Do u get t3 or NDT that way? Cheeky Charlie ?
I'm currently seeing an endo privately who prescribes me T3 and my GP kindly writes the script.
Dont waste money on private insurance. Just buy what u need online. I do and then i see a private gp for guidance a couple of times a year. Far cheaper than private insurance and my health is not jeopordised by the Nasty Health Service any more
Email Louise at thyroid uk and ask her to send you her list of thyroid friendly private doctors. Just as a guide I went to see one of them today, had a most pleasant 20 minutes. It is so nice to be listened to and taken seriously. I left not having to go back for 3 months,with a suitable supply of NDT and it cost about £100 all in. It was my third visit, the first one cost a bit more than that with the tests. Personally I think that's excellent value for money.
1) You are entitled to choose which hospital you go to under the NHS, but the hospital chooses the specialist if the GP doesn't know them by name. Don't let your GP say otherwise. You could choose a teaching hospital to give you the best chance of seeing someone with brains. Sadly what does not seem possible is a referral to an English hospital if you live in Wales.
2) Sarah Myhill is in South Wales. Not an Endo, but a private GP with a special interest in ME. But she is very good.
Otherwise you will probably have to travel to England. It is a sad fact that Wales is a bit of a health backwater.
Are you sure that's the same in Wales because she completely denied that yesterday? Are you in Wales yourself? I said, 'so it's different from England?' and she said 'oh yes!, I have no control over it, it's the health board.' How do you know this for a fact because I want to make a formal complaint about them and if that really isn't true I will add that to my complaint. I am in Carmarthenshire, maybe it's different?
Yes I consulted with DR Myhill via letter when I was first diagnosed with M.E, I was in Suffolk then and couldn't travel. I spent a lot of money but nothing made much difference, but then no one was looking at my thyroid were they because I was on 175mcgs T4 and 20mcgsT3 with a surpressed TSH so no one expected it to have anything to do with it.
Oh it would be so useful to me if what you say is true! Thank you.
You want to ask this 'health board' whether it's true or not. They'll be online somewhere. Whether you'll get any sense out of them is another matter! There is just the one hymnsheet where thyroid patients are concerned.
Do add to this discussion. The Daily Mail ran an article and lots of people have added their experiences : dailymail.co.uk/health/arti....
You might even get an answer to whether it's different in Wales.
I have commented on that discussion, yes I am pretty certain it is different in Wales. You think it's bad in England? Dont move to Wales, I did and I can't believe how third class every part of the health care is, its like something out of the 70's. If you got cancer I reckon you'd have a far higher chance of dying here it's that bad. Not just my experience all my family's from heart to bones to endos!
I am so sorry! I looked at a couple of places which didn't mention location, but now that I have looked carefully it seems that the right to choose is for England only.
What a travesty!!! Someone mentioned not retiring to Wales because the health service was so bad, but now that I look closely it seems that it really is much worse - with all the money going on free prescriptions! I admit I am very lucky here, with one of the best DGH's in the south of England not far away (but its not my official one, so we go through the 'this is where I want to go' rubbish every time ).
That having been said if you feel that Sarah Myhill was unable to help, you'll probably find it hard going with anyone. She seems to have a pretty good success rate. My own GP said to me that he thinks medicine might know 1% of what is going on with the endocrine system, and if the sledgehammer of Levo doesn't work then they are stumped. I think it is quite likely that many of us, myself included, will never be truly sorted, and there comes a time when you need to put your energies into getting on with life as best you can, rather than searching for a magic solution that is probably not out there.
I have been to see Dr Owen, and he certainly has no quick fixes for me. He's tested my adrenals, and given me a collection of supplements, plus a homoeopathic remedy and sent me away for 3 months with instructions to continue self-dosing with NDT but to keep a record of my doses. So he isn't exactly expecting a rapid resolution! I've got better, but not best with careful diet (no carbs, sugar or processed food) and self-administering NDT, but I know its not the whole answer. But what can I expect after 60+ years of vaccination, powerful medicines, and not so good eating? - certainly not a miracle cure.
If you did decide to trek up to London to see a doctor privately, it would at least not have to happen very often, and after the first visit you could probably get away with mostly phone consults.
No private insurer would be prepared to cover your existing conditions. Insurance is for the unexpected, not the guaranteed. So you would have to self-fund. But given that there are no operations likely, it won't cost all that much, (although 'much' depends on your means, doesn't it?), and be less than private insurance which is really designed for big expensive operations like hips and heart bypasses.
Thanks, I am was so ill with M.E before she cut my T4 and T3 I could barely be driven an hour an a half, then I'd have to lie flat for about two hours before I could get up again, so London was out of the question then - now it feels like the moon! Having in effect had my meds cut in two and all my t3 removed in one fell swoop just sitting here typing is bad news. Back to bed! Thanks for your suggestions though.
Dr Myhill is kind and concerned, but I'm not sure how many people she's actually 'cured' of M.E. At least she thinks about it scientifically, what is going wrong, what could help, but she just accepted my long standing Hypothyroid and supressed TSH without thinking it could have something to do with things.
I don't expect miracles, I gave up on those 1 year after being ill, but if it is my thyroid and not M.E then I should hav e a good shot at recovery. My diet and lifestyle have always been very healthy as an adult.
Dr Myhill has helped a friend of mine with ME very much indeed, but it has been a slow process. Dr Skinner (RIP) told me that he thought that although its not just that, much ME has a large thyroid component. He also pointed out that when he first qualified as a doctor there were no tests available, and people were treated with NDT until the symptoms abated.
I won't bore you with my long tale of conventional medical woe, but I have to admit to self-treating with NDT (Thyroid S) for years, most of the time without medical support. I 'm not sure its the solution for everyone, its lonely, and risky. But then so is not being treated which is effectively what I got from my then GP. I just worry that NDT might disappear from the slightly grey market where I get mine, which is why I chose to see a doctor, so I could get a scrip if I needed to.
Yes that worried me about becoming free range from my prescriptions, but Myhill isn't taking anyone even if I could afford it. I want to prove to myself that this is thyroid related. I have always had a brilliant NHS experience bar M.E until moving to Wales.
My ex had ME, before it was properly recognised. But his NHS experience was fine. He was fatigued, but no weight gain, hair loss or any of the other hypo symptoms.
I think, from what I can see, that thyroid patients everywhere, but most especially in the UK, get a really rotten deal if they don't fit the conventional pattern (and I do know people who do fine on Levo, lots of them).
If you were better on T4/T3 then whether its truly thyroid or not is pretty irrelevant, IMHO. Its not as if they are offering anything better.
Well I am diagnosed hypo, and had been fine on T4/T3 for 17 years, and was half way toward m.e recovery, but when she slashed my meds because of supressed TSH (which it has been for years and endo in Norwich was fine with it) i fell back down the rabbit hole and that has made me consider that actually my thyroid is at fault. Perhaps imbalance of T4/t3 leading to RT3 following massive stress to body via 3 major operations, septacemia etc.
My partner was also M.E for 16 years, took the best years of her life, she finally recovered, met me and then can you imagine how cruel to 6 years later have a partner who also gets m.e??
ps - my TSH is now high as a result of cut in meds, so you'd think they couldn't accuse me of that being in my head, but the GP gave off that attitude whilst begrudgingly prescribing me an extra 25mcgs T4, but of course its not enough and they'll never give me the T3 back, I suspect because of cost!
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