I noticed a recent post saying that a person had to remortgage their home to pay for private treatment, having been failed by the NHS.
Many of us are having to buy a large number of various supplements/consult privately to help us regain our health. It follows that many people are struggling financially particularly if unemployed or not well enough to hold down a job.
So ... how far does one go before one says I can't spend that amount of money any more?
Just really wanted to open up a discussion so keen to hear what you all think!
88 Replies
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Hello,
I think that might have been me. At least it is something I've said recently. The way I see it is this - I will do absolutely anything I can to help my daughter get better. She has already seen her father die because he went undiagnosed for years. She is doing her absolute utmost to make some sort of life for herself, having lost her teens, her twenties and now at 32 has not been able to enter one profession for which she began training or another that she did manage to train for. She sees a bleak future ahead of her with no relationship, no marriage, no children, no job.
Yet she is one of the happiest people I know. She remains independent, positive and optimistic despite some days being as bad as any I've seen described on here. Keeping that in mind I don't think any parent would not do what I'm doing. My house is worth money, and that money is needed now to be put to good use. If we don't find a cure for her before my days end so be it, but we will both know we've done our best. No mother is going to sit back and watch her daughter go the same way as her husband just for the sake of bricks and mortar.
Well you did ask......and that's what I think. Jane x
Jane I know that I would do the same as you for my children. My parents and sister were not there for me when I was struggling for some years. I remember my sister saying "well if your Doctor says it's not your thyroid that is the problem then it isn't". So I think your daughter is very lucky to have you as a Mum. It is so lovely to know that she is happy. Wishing you both lots of luck, we are all rooting for you xx
Wow, that's powerful to read, Jane. ((((Huge hugs))))
I think when it comes to our children and loved ones we will go to great lengths but I know, for me personally, that I wouldn't go that far as the stress would kill me anyway. I don't have family or friends who would help and I think many are in the same predicament having lost those who were once close because they don't understand this disease. xxx
in reply to
Jane - I can't imagine how tough life has been for you and your family. You are being amazing for doing all you can for your daughter, despite it obviously being distressing for you.
I do hope that your daughter continues to show such spirit and good health will be regained. xx
in reply to
Thanks Cinnamon, the way she has tackled what has been thrown at her is amazing. I am very proud of her.
You've elicited a good lot of comments from your question - they make an interesting read.
Jane x
in reply to
Jane , you are lovely x I would do the same for my son. We've been in debt because of hypothyroidism. My husband had to give up work when my son was born, because i was so ill.Mum couldn't help because she was looking after my late dad who died of hypothyroidism.We've spent a fortune on private doctors and acupuncturists and cranial osteopathy for my son and myself.It all came right though because we received a PPP payment owed to us-and all our debts were paid!!!
in reply to
Good news! I'm waiting for a lottery win - not a big one - just enough to ease things along. I know what you mean though about trying so many things in search of that elusive magic bullet. One day it will turn up I'm sure. Jane x
This is the reason I thank god that I have a GP who was experienced and knowledgable enough to perscribe me T3.
I am a single mum (although my kids are now grown up and left the nest) who owns her own home so spare cash (or even cash some months) is a rarity and I would never have been able to go down that route. Maybe a private doc now and again if I had saved for months but beyond that I dont think I could have managed.
I think its a discrace that many have to resort to these measures to get the treatment they require and deserve.
Moggie x
I dont take any supplements at all, not because I dont need them, but because I cant afford them and the NHS wont provide them. I do buy my own armour, through necessity, but we are barely managing to live, my partner works horrific hours in a crappy job to keep us both because I'm not and never will be well enough to work, I could do temp jobs as and when I was upto it but theres none to be had in the local area.
No point in selling the house, we have an interest only mortgage thats less than council rents with little equity and no savings.
If things keep going as they are I can see a day when we can't afford my armour any more, at which point we give up, I'd give myself about 6 months max without.
We're quite happy despite being totally skint , but thanks
in reply to
((hugs)) from me too
and I remember playing hide & seek with the kids (shh!) behind the sofa when the rent man called, & having an 'interest only' mortgage is crap too (despite being told it was mis-sold but too late!) it's only money - can't take it with us! so I'll take happiness instead xx
No, I tried this before and got nowhere, I really thought moving to a new area and starting again would make all the difference, I got told medical services were so much better here...wrong! Its just as bad if not worse.
Not sure if I have the energy or inclination to try fighting again, I manage better with as little involvement from doctors as possible, without getting more people involved. I'm very much in a "leave me alone to do my own thing" mindset now. I cope better that way
in reply to
Oh susie, that's such a shame and most worrying for you both. I do hope that your situation improves soon. xx
I buy my own NT, I take 3 grains a day... It costs me less than a hundred pounds a year, thats £2 a week.....
Selenium and Vitamin C are from the supermarket and cost about about £30 a year or 60p a week...
Initially I spent around £400 on tests using Genova and £125 a year later using a different lab for iron profile. so if I allow £150 for testing,( though my doctor is happy to do tests annually) thats £3 a week.
In total I spend £5.60 a week on my health. I stopped smoking almost three years ago, which was costing me around £50 a week.... so I think I can afford the £5.60... How are you working out that its going to cost you thousands?
Hi Galathea, when you say NT do you mean Nature-throid? I currently pay through a private prescription and it is about £35 per month, i take 3.75 grains a day. Can you possibly pm me where you get yours from? Thanks x
May I ask where you buy your nt ? I'm on 75 mcg Levo T4 and it's keeping me sick.
Would I need a private prescription ? I don't have a house to remortgage, am too sick to work and am also divorced. I am walking this road alone, that is except for this wonderful site and all the intelligent,witty and supportive people here.
I am very fortunate as we could afford to see private doctors, herbalist, acupuncture - you name it, I tried it. We had to buy a portable mobility scooter and have paid for so many different medications and supplements.
I have heard of several people who have become bankrupt because of this disease. I have not been able to work for over 6 years so thanks to my husband I am able to buy my naturethroid, B12, vitamin d3, progesterone cream, good quality omega 3, vitamin c and visits to the chiropractor.
I don't feel at all guilty that the NHS pays for my purified levothyroxine and the odd pot of cream.
If only we could all have good treatment from our doctors and of course the medication that we need!
I too am fortunate, I couldn't afford to pay for private doctors, but I'm blessed with an enquiring mind and the ability to sift through piles of information. I just read and read and pieced it all together for myself. Takes a lot of time and determination though......
No, neither of the two Wellsprings products worked for me.
in reply to
Serenity got my saliva progesterone up from deficient to completely off the scale high, but then if you are using the cream the saliva tests are no longer of any use. I would like a blood test.
Did your levels not improve on Wellsprings?
koala
in reply to
I've not had any test for progesterone. I'm coming to the conclusion that until such time as I'm fully medicated then the sweats will continue.
May well go back onto HRT, still have some patches left. Wellsprings did absolutely nothing for me.
I saw various doctors both privately and on the NHS, most were useless, but Dr Skinner helped a lot so when I thought I was stable I started buying Armour then ERFA without a prescription, because it was cheaper that way and you do have to think of future expenses. I also am not completely better with just thyroid treatment and am being treated for the probable causes of my endocrine problems by a complementary practitioner, which also costs money. I worry about not being able to afford meds and treatment in the future and also about being unable to do things for myself properly. Assuming it's only recently that so many of us have been self treating, there will come a day when a lot of us are suddenly being looked after and what do we say then 'This is a nice room with a pleasant view, oh and by the way I take an unlicensed, foreign manufactured thyroid med made from pigs, will the nurse/housekeeper/warden get them for me over the internet please?'. It's a scary prospect!
I'll continue until I can't afford the meds any more, but I have a house I can sell if necessary and there's really no alternative but to keep going is there. But for those who are starting at a different angle, with no assets and no means of support, I think the future must be very bleak. If that side of the story was put to the national press perhaps someone might take notice.
I buy online. I am under a private virologist but cannot afford private prescriptions. If my private guy retires (nearing retirement) I'm on my own and will be left to self medicate. Thanks GMC.
I am in the process of Equity Release because I can see a time, very soon when I wont have the energy to work, Im 59. Misdiagnosed for over 2 yrs, antidepressants because my GP told me I was a typical unhappy 40yr old!!!
finally when I made him take blood test he found my TSH was 33.9 and that was why I fell over a lot and wanted to die. I have only just found out that I could have sued him, which I wish Id done because he has shortend my life with the damage to heart and arteries. I know have menieres and tinitus. Ive been too frightend to drive over 2 hrs anywhere so have only driven down to see my Mother once in 12 yrs! I buy myself DHEA and have done for many yrs now. Im on serc 16 which Ive been informed can cause all sorts of issues if taken for a length of time. No T£ here they wont even think about perscribing it. Why does it cost more money?? The GP has taken some of Thyroxine from me, although I was in the normal, offered my HRT instead. Why? not one of them will give me an answer. Why HRT when there are side effects rather than Thyroxine? Do any of you know.
Ive come through the menopause, done the hot swets etc why go through it all again, again no definitive answer from the GPs just that it may help.
As for me -although I eventually got diagnosed 'formerly' by the NHS it was only after several years of terrible ill health that practically destroyed my career and robbed me of vital years of fun with my young children. Even when eventually diagnosed I had to go through the terrible saga of not getting what I needed on the NHS and going to private docs, and buying my own suitable treatment. I dare not cost it all up. What I have said to myself is that without this private treatment i have no doubt that i would either be so ill that I would be bed bound or dead. I have two children who mean the world to me and I also believe I deserved better re treatment.
In the end I took the attitude that paying all that money out allowed me to return to work or me and my children would have been out of our mortgaged home on the streets. I am a fighter though and that is what has seen me through so far. I do get my Erfa on the NHS now (after three years of paying for it privately) and still continue to pay for a private doc to oversee my health (I don't trust the NHS as have had too many incidents of near terrible misses due to their ignorance) and of course pay out for all my supplements.
These days I avoid the GP like the plague and only go if I have no other choice as I have absolutely no faith in them but I do have very good reason to believe they will do me harm -so why butcher myself further by letting them! GP's are a case of a little knowledge does harm...or whatever the expression is but this is how I view them and I research like mad for any ailment that I have, make sure I know loads and have my research docs with me before I go near them. Yes there are financial costs but i have been lucky that I have found a way to pay for them so far by making sure i am well enough to graft ( or still being able to drag myself to work).
I don't think about old age and what I will do when I need care -what is the point? It is too bleak a picture. If I live that far it will not be down to the NHS!
I agree - this pretty much sums up what I feel too waveylines!
I think I became ill at 18 with my pregnancy - and finally got diagnosis with meds. from NHS at 59 years old.
I feel my life was stolen, relationships damaged, and work prospects limited.
I seethe with irritation at the privileged salaries these people are allowed to walk off with - whilst consistently ignoring important research and data concerning these very complex illnesses. Especially when its a so called 'expert' endocrinology consultant. I am now self treating - having been told by a previous Doctor that she would not treat me at all, if I opted to purchase NDT myself. Having now tried Doctors at ever practice in my neighborhood - without finding much difference between them - I feel I have no other option.
It is increasingly difficult to manage from my pension ( all the expensive supplements + NDT) and consumes all disposable income. No funds for classes, social life, holidays etc...
An extra problem I have had - is to suffer from some issue ( absorption ? genes? who knows??) with mineralization, and my nails, teeth and bones. The result has been 4 broken ankles in the past 20 years. Added to this - teeth which have simply become untenable through decay, infection or simply fracturing and falling out in pieces.
Because this has been so upsetting to me, I decided to go through the grueling process of having 9 teeth implants placed this year. ( I was given 2 teeth implants 12 years, ago by a dental Hospital - when they had funding from a company to test the product for them.) To do this has necessitated taking equity release on my home.
I know it is a long winded process - but decided I really had no other option - because dentures to me, are such a compromise for both health and self esteem.
Well - here I am 12 months later, 2 operations (to remove snapped off roots, and augment bone - from 3 previous dental operations due to infections) later. About to have the implants placed in an operation due just after Christmas.
Through out this year - I have inquired from my Doctor, Dental Hospital Consultant, and private Dentist doing implant work - about maybe getting metal allergy testing done - before going ahead with this mega ( over £20,000) spend.
Not one was willing to help me do this. I was met with grumpy aggression when ever I tried to broach the subject. One reason I felt I needed to have this testing, was because I've had eczema type red sore and scaly patches on my skin for many years now. I also had a 9 month bout of severe urticaria, which caused eyes and mouth to swell horribly. While I am well aware that all these skin problems could be the result of my Hypothyroid condition ( and my belief was, that this was actually the case) It just seemed like madness not to play safe - by costing Melisa metal allergy testing, into the already outrageous budget for this en devour.
So........... 4 weeks ago whilst researching how to get mercury amalgam fillings removed from my few remaining teeth.............. I found a dental practice in London who advertised this test!! I was in London anyway to see Endo. and arranged to have it done
.
You've guessed it!!!
I elected to have the most comprehensive testing done, of 20 dental metals.
The reason being - that there are 14 in the crowns of the current teeth implants, others in amalgam, and yet others used for implant work.
I thought that if my rashes were metal related - it would because of these items.
The two metals used in implant work are Titanium and Zirconium.
Dentists to a man/woman - insist there is no such thing as allergy to these 'safe' metals which are also used for joint replacements.
I discovered last week - that out of the 20 metals tested - I was negative to 18 - and positive to 2!
Unfortunately - the 2 I am allergic to are TITANIUM AND ZIRCONIUM!!!!!!!!!!!!!
So here I am - feeling very despondent at the prospect of a denture for life.
£3,000 spent for nothing on 2 operations - which necessitated spending much of this year in doors with no teeth - whilst other were out celebrating!
I had my mercury fillings removed yesterday - and was telling this dentist my tale of woe.
He said 'they teach you how to do implants - but not how to take them out if something goes wrong'
From what I can gather on the internet - the only way they can be removed is by actually cutting the jaw away - because they bond and integrate with the bone..
Sorry that this is a very long winded response to your comments. I guess I hope this tale might help others if they are contemplating implants.
So sorry to hear what has happenedto you Out of Sync.....it just isn't plain fair! You are right -doctors need more training and the whole approach to the treatment of hypothyroidism needs a radical overhaul. it is just too easy for docs to dismiss....as there seems to be no consequences to their actions... Really hope you find a way forward with your ppoor teeth. Hugs xx
I'm still in shock over it all. Finding it hard to believe still. Yet alone work out what to do next.
I think one way forward with Doctors is for us to insist they show us the proof! Where is the science which backs up this blanket tyrannical approach? Where are the figures that prove that all but 13% of us return to good health on this blood test / Levothyroxine treatment paradigm? If they want us to believe this 'gold standard test' - they need to show us the empirical evidence is there to support it.
Of course this is not that easy to achieve - we've all experienced being ignored by these 'health experts' many times over.
What is Erfa? Ive never heard of it. Im so very sorry, its hell isnt it, Ive lost so many yrs of my childrens growing up especially my very young, at that time.
Framboise - have you seriously thought about going to the press? I agree that this would be an excellent way of raising awareness quickly. Letter writing may or may not get one anywhere, probably not. Have even thought about organising a thyroid disease awareness week, sending out leaflets with what is NOT happening and what should be happening on them, going to local radios and inviting discussion and trying ro organise it so this happens on the same day and roughly the same time. But to be honest I do not have the energy most of the time and certainly not for extras. Perhaps a group organising it so stress/energy levels are shared.
Thyroid UK has a Thyroid Awareness Week every October. Last year we had the Conference and this year it was themed around infertility, miscarriage and pregnancy.
I wonder how many people on this site actually knew about it.
Press releases are always sent out, but the press generally doesn't jump up and down about it.
It's a sad fact but Thyroid disease and thyroid patients are not a "sexy" enough subject. Anything to do with fluffy things or children will always get coverage, as will any sportsman who becomes ill (e.g. Fabrice Muamba, Sebastian Coe) but chronic illnesses including thyroid disorders are "under control" apparently and not worthy of news coverage. Please don't think I'm suggesting those other categories of illness are not worthy of publicity, but I wonder why we never see an athlete, politician or any other high flyer who has recovered from thyroid illness! The answer is clear I think.
you are so right Jane. Ive just joined the Menieres group as mine is getting so much worse. the tinitus is constant and loud. one ear a little louder than the other, driving at night not great and walking in the dark hatefull. I have had yrs of not going places because of the problems all assosciated with the thyroid
I spend every penny of my pension and more (luckily my outgoings are very low) on private tests, private doc and various supplements. All the NHS doctors I have seen have been useless and refuse to treat me because my TSH is not elevated enough for them and T4 comes within the range. They are ignorant and I cannot waste time and energy trying to educate them. I also don't want to call attention to the fact that I get my glandulars from the US because I want porcine ones not bovine. At the moment my hormone levels are rising with just glandulars and these may prove good enough to make me euthyroid. If not I will go on to NDT. Eventually, when I need to see the private doc less and have fewer tests treatment should get less expensive. In general I think modern medicine sucks, as far as treating chronic disease goes anyway.
yes one hears of T3 but Doctors here wont contemplate it. they dont want to talk about anything but the TSH levels, T4. I dont think they know enough and wont refer me to a specialist. what are you on and where do you get it please
Hi Janeb -- many thanks for that. No I did not know. Next time round what can any of us do - if we have sufficient energy - to help the promotion/awareness? Would it be worth getting some preparatory work done by, for example, contacting local radio in advance.This gives them time to do some research of their own. And, why can't the theme next time be about the problems experienced by sufferers and getting meds right and getting sufficient & thorough tests done. The NHS has a moral obligation and responsibility to
1. Provide sufficient, efficient & thorough testing BEFORE people are put on any thyroid meds this will include tolerance test and adrenal checks: as well as vit and mineral check and all the other T checks, also background and previous hormone problems
2. Provide a system to reverse &"fix" side effects caused by the perscribed medication.
At present, we are put on it regardless, when things go wrong, they turn their backs and walk away!!! This is NOT good patient care or very housekeeping.
I so agree! well said, i have the shakes due to the thyroxine. My daughter keeps mentioning it when I hold a cup, but wont believe its due to the meds. What do all these meds do to us in the end.
Tavy -have you had your B12 levels checked? They need to be over the 500 mark. I had the shakes too but since medicating with b12 and the a good complec Be vit with folate in they have gone......just a thought. xx
thank you, nope not checked no one has told me that before. Ive got to have ablood test next week. supposed to make an app for 6wks from date of appointment, receptionist, we dont make app that far ahead. ok so phoned 2 wks later, ha now there are no appointments for the next 3 wks.
yes, its like, we have given you the pill now go away and take it. we dont know what else to do with you. Lets face it the gland controls the whole body, mental and physical. All the differences in my when they take thyroxine off me, lessen the dose I mean, I very nearly lost my job last week, I told the bosses what I thought. ha. didnt go down too well. Im so much more opinionated and say what I think, not think first.
Is there any way that you could persuade your GP to carry out comprehensive blood tests?
Can I thank everyone for sharing their stories and what sad reading they make. I really don't know how some of these so-called professionals are allowed to practice, let alone being rewarded financially with mega salaries and pension package.
I'm taking T3 (bought from abroad) and the cost is approaching £25 per month, still undermedicated too.
In addition daily am taking 8 x Isocort, large dose vit C and D, iron, glucosamine, Co-Q10.
As tempted as I am to approach useless GP re the NHS prescribing T3, I fear that I would become shouty and tell him to do his job properly by listening to his patients!
I've had to resort to my own resources too - because a mixture of 'outraged sense of justice' mixed with these 'darn adrenals' means I always become shouty!!
The last Endo appointment I attended a few weeks ago - he said 'he could see my hands shaking - which meant I was Hyper' - and he wrote to my Doc. to reduce my meds! I was shaking all over the the effort of trying to pursued him to listen to my symptoms and not my blood tests.
Perhaps we should get together and form an amdram society to tour the country with a farce - about our relationship with those payed good money to help restore our health. What do ya think?
hands shaking do not mean over dose, it is thyroxine that does it. read the info in the box. I get angry and tell people just what I think, that usually happens when they lower my dose. as well as hair thinning and putting on weight
can you let me know where you buy the t3 please, Id like to give it a go. Drs have refused, point blank wont discuss it at all. In fact they get quite stroppy if I ask, and if I ask to be refered youd think Id asked them to kill themselves.
Do you still take thyroxine and if so do you lower your dose?
oh Laine -I think you will find that has already happened sadly. In the book Tears for Fears.
I've had to leave the area I lived in for around 25 years, basically unable to work and am on my own. I moved to another part of the country to a cheaper house and was also optimistic that a new GP might be more enlightened.
I can see that I may well be forced to move again, there's not many jobs around and having been out of the job market for years due to illness does not help my employability.
Thanks to successive useless Governments, one feels that the economy can only get worse and more people are left to 'exist', with no quality of life.
Oh yes there is a real problem alright but it is not just related to thyroid treatment. i am on the PA site as well and am afraid what is said on there is shockingly familiar. Frankly it seem to be about a general attitude and skill level that is poor -it is making me wonder if other chronic conditions also suffer from the same poor one treatment fits all ( I call it doctoring by numbers)....where oh where did that come from ...we are not clones (!! -or is there something i am not being told!).. causing others to seek self medication......
I lived in a fluffy white cloud until I became ill 10 years ago -now it seems I live in a land of bleak harshness where professional rigidness rules and ignorance flourishes and grows.....I long for my fluffy white cloud! xx
I wonder if it'd be worthwhile booking a holiday in Belgium and seeing a doctor here? (I'm writing this in Belgium hence "here")
The reason I say that is the outrageous fees private doctors charge in the UK. I saw a specialist here for 33 EUR.
the thyroid blood tests I have had in Belgium and Germany have always included fT3 and fT4, then anything over TSH 2.6 is considered possible hypoT. I was put on Levo with TSH 5.4, far lower than a lot of docs would accept in the UK. I felt like I was going to die though, appalling! Goodness only knows why the poor people living in the UK are forced to wait till theirs reaches 10, I think I'd have had a heart attack by then, my heart had gone so weird.
T3 is not easy to get here but it is possible. They always check for antibodies too by the way, then I had a scintigraphy scan and about 3 or 4 thyroid ultrasounds. My ultrasounds were normal but the scintigraphy showed minimal thyroid function. All standard thyroid treatment.
It is truly tragic that someone has to sell their house so that their loved one can get medical care. I would definite look abroad, Belgium, France, Germany for example.
That is really interesting and very helpful. Thank you! It's good to know that there are other options out there. How do doctors feel about prescribing Armour etc in Germany and Belgium?
I haven't tried to get Armour, but I would imagine that it'd be difficult in Germany where doctors are often dreadfully conservative. They treat efficiently with Levo ie they do the full thyroid panel regularly and medicate quickly once your TSH rises and / or if you've got antibodies, but Armour is not their standard treatment. I get Levo and T3 on prescription from German doctors. Getting T3 wasn't difficult but I did have to request it.
In Belgium where I live (I work in Germany) they also treat quickly with Levo. I wa initially diagnosed hypoT in Belgium and put on 50 levo immediately. I haven't tried to get T3 here as my German docs prescribe it. The blood tests are great too though, regular full thyroid checks. As for Armour, there are private docs who prescribe it, I know that for sure, but I only go to normal ones and use my standard medical insurance, the insurance everyone has over here. I have never seen a private doc.
I think some Belgian 'NHS equivalent' docs would probably prescribe Armour, but you would have to check first. You can go straight to specialists here without a referral and the fees are very reasonable. I mean the normal specialists, not the private ones.
My Belgian GP is brilliant about DHEA too, she prescribed it straight away after saliva tests revealed I was deficient. The German docs weren't allowed to prescribe that so on my way home I popped into the Belgain surgery and got it instead.
koala xxx
in reply to
Sounds as though you're in a better place than the UK!
Can I ask what is a scintigraphy scan?
in reply to
I wrote a long reply to you cinnamon, but it disappeared
basically, a scintigraphy is a radioactive scanner. When they scan your thyroid you then get a multicoloured printout showing your thyroid function. Mine had very little red or yellow, th colours that show an active thyroid. Presumably hyperT people should have far too much red and yellow.
What is better here is the lack of waiting lists and that you can take yourself off to a specialist without wasting time with the GP. I really, really like that. The other good thing is the regular testing of all the thyroid hormones, they always do FT3. But the biggest difference for hypoT patients is that there is none of that cruel torture of having to wait till your TSH reaches 10, they treat far more quickly and readily here, albeit with Levo.
I must say though, I went to NHS A& E in London last summer and they were wonderful. So kind and efficient. I felt so ill and they couldn't have been sweeter. they said I clearly needed an endo but couldn't send me to one - they advised I use Bupa! I haven't got private insurance... luckily I can go straight to endos here with my standard German medical insurance.
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