It has come to my attention recently that I am by no means the only member here who is virtually destitute due to negligent doctors over many decades.
I have lately been ‘bumping into’ women on this forum (it’s a women’s illness after all), who are in the same dire situation as me concerning income, savings and most importantly housing. A few weeks ago, for a few days, I truly thought I would be homeless.
I had thought it was only me, and maybe a few others, who had lost their pride and dignity due to the utterly devastating illness (ie anything regarding thyroid) which is not being diagnosed correctly and certainly not being medicated correctly.
Should we ask Lyn Mynott to do an anonymous questionnaire asking if our illness has caused devastating financial consequences?
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marigold22
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I nearly lost my job, my employers wanted me to take ill health retirement, but with two young children I couldn't afford to retire, my union saved my job and still are supporting me.
What could we do with the information? It would be very interesting to actually discover the seriousness of the impact that negligence is having. Because doctors have left me to rot, the government is now having to pay out more than I would have had if negligence had not occurred.
I should explain - I sold my house (which had a small mortgage on it) in 2006 to live off the equity. I slept for 16 hours at any time of day or night, and was unable to hold down a job. Doctors told me my blood tests were fine although I didn't see the results. I have seen them now and they were definitely not fine.... TSH 17 is one example. Because doctors told me I was fine, I was not entitled to any benefits being under retirement age. Now I am living on meagre government pension, topped up with pension credit, housing benefit and don't pay any council tax. How can that be good for the government? From being diagnosed with hypothyroid in 1981 I was seen by 4 Professors of Endocrinology. In fact I discovered via a private blood test in January 2017 that I have Hashimoto's. In the year since, I have done everything possible to get my body in shape; and I think I have managed; except for the PTSD I have been left with due to all the traumatic events over those 36 years.
You are right that hypothyroidism is predominately a woman's illness. Apparently we outnumber men 90% to 10%. However it's always good to hear from men on this forum too.
I am so sorry you have found yourself in this situation. I too could not do paid work for the few years before my pension, but was illl with kidney disease so was able to claim ESA for 18 months before retiring. I was born in 1952 so get less pension than a man born on the same day (due to pension changes) and am bitter about that as I paid in the same amount. I am also cross that my GP did not diagnose Hashi until I had a huge goitre and was seriously ill. Then they refused to believe that I could not convert Thyroxine, so I took my health into my own hands and have to pay for NDT to keep me upright.
When it comes to either buying my medicine or heating the house, something is not right. I did have a private pension but Gordon Brown ran off with that.
There must be many of us who find the financial struggle more than difficult, and put ill health on top of that, makes everything much more difficult. Hug.
There is a popular news tag at this time of year ' eat or heat' I often think be grateful your not hypo! Eat heat or try and stay well. When my thyroid was removed I had a well paid career so my income went over night. I used all my savings during the long periods i couldnt work. I am extremely lucky I still have my home. I dont have energy to socialise or long haul holidays now , I don't need the car etc so that saved me money but it has cost me a fortune for private tests endo Dr's self sourced meds supplements, my thyroid removed but no hypo diagnosis and no levo prescribed, my Dr's had no interest in getting me well until they saw how well I was doing by myself! Then they were happy to take over prescribing. Once correctly diagnosed I got free prescriptions!!!!! My bags of prescriptions every month which cost me nearly £3500 over the undiagnosed years. My private pension is gone. Tbh I am angry if I think about it due to crap Drs I lost my career which i trained hard for, my savings, my health, my social life, my standard of living, my sports everything I enjoyed. I'm am luckier than most I know but it was not what I planned for the 2nd half of my life just getting by when I had worked hard and saved for my retirement!
i forgot to say the irony of now i get free prescriptions i dont need 26+ tablets a day to treat all the symptoms of hypothyroidism!! so i paid for everything, i didnt even know about the NHS card to pay i think its £10 a month for unlimited prescriptions, the dr and pharmacy never told me!
I was certainly too ill to consider filling in forms or see anyone to apply for benefits, i couldnt get out of bed or off the sofa, i was just lucky i had savings, which were for my retirement not to subsidise the nhs and ignorant drs lol
The honest truth is getting well was more important than waiting around for my idiot dr to get up to speed...not having a thyroid, its not rocket science is it!
I am also aware that i had the savings to fund tests, private appts etc not everyone does, it is a massive drain and i resented having to fund it. Im always reading people kindly advising get this test, that test done, not everyone can afford to. I am lucky enough to have adapted my work, to work from home and still make a small living but i could deff not even now get up, wash, dress and drive or bus to work, do 8 hours and get back home day in day out, plus shopping, cooking, house work. I can work from my bed or sofa writing reports, analysing tests and phoning customers when i have the energy. Having to leave the house daily to do this would give me massive anxiety.
I also dont have a family to take care of, hubby has had to learn to be more self sufficient. How most of you manage i just dont know, my hat goes off to you, you are warriors <3
If the medical establishment cannot even diagnose our hypothyroidism they are highly unlikely to compensate us for our lost years and livelihoods.
I too lost many thousands of pounds because I could not run my business or work full time. At one time I was living on baked potatoes because I could not afford my mortgage and food; I deemed my house more important. It is the social cost which cannot be compensated for, the inability to socialise, hold down relationships, have children, etc., which cannot be undone. Not only was I sleeping all the time but my brain did not work, which I found bewildering. I could not cope with decisions and slept through them. Like marigold22 the nhs did not diagnose my hypothyroidism for some 30 years even though I presented with symptoms. (I think that my being slim during this time may have confused them.)
Same here, ESA stopped after assessor said nil points, I am Hypothyroid and under medicated for over a year, still not sorted, heart failure which NHS don't seem to associate yet everyone on here says opposite and HIV 15 years all leaving me with crippling neuropathy amongst dozens of other problems. Council couldn't wait to send stop letter for housing benefit and ESA sent out P45 before assessment results or any assistance going forward.
I've just had a friend going through the same thing with housing benefit, and it happened to me a year or so ago. When your ESA stops, they automatically stop housing benefit.
But you're still entitled to it, it's means (income) tested only. I believe I got mine back on track with a phonecall. But even if a lot of time has passed, you can always make a brand new claim. Unlike ESA, PIP, etc, the housing benefit application is quite straightforward and is only about the money you've got coming in, you don't have to prove how sick you are
I have had a underactive thyroid for over 60 odd years, when I was a child my parents had to push to find out what the problem was, my Mum was just told she was a fussy Mother. I was one of the lucky ones my parents found the money for me to go private. But nothing much changes as far as Doctors and more importantly the NHS is concerned. Had problems with it all through my childhood. You just have to learn to live with it and sort any problems yourself as most doctors today do not have enough training on it, that is why they do not understand it enough.
Can you find some work to do from home, I started doing that when my children were young 18 years ago. I was self employed so in theory I could do as much or as little work as I wanted.
Work from home is what I may try to do eventually when I'm a bit better. But work from home is generally using your brain, or at least ability to speak, and I'm still too unwell to do those things.
I really hope not to be in that position, tho, because using up all the energy in the house would probably mean never going out at all, and that would be very depressing
My work was with textiles, it involved using an industrial machine and hand finishing but it didn't require much brain power and I didn't have to speak to anyone 👍 I worked the hours I wanted and still had a life. Can be done.
Sounds very good. But also a bit physically demanding. I'm not really able to sit up or reach.
This is the hard thing. I used to work with my brain, and that is ruled out at the moment. But if you're not paid to use your brain or specialist skills you have, you will be paid to use your body and physicality. It's very hard having an illness that impacts both of those.
I used to be an academic, so lots of brain stuff, including concentration, memory, etc. Much harder to find something very flexible from scratch, rather than already having the connections.
I tried various types of home working before I eventually sold my house. It didn't work for me - I needed to sell my wares & had no idea where to start. If a company wanted home workers fair enough, but they pay peanuts.
I think that we could do with a petition to try to get thyroid problems taught properly at Med school. It seems that something has to change there to shift doctors' thinking.
For last 2 years I was paid to give talks to final year med students and jnr Dr's and in that 2 years not one was interested in thyroid. They are all shocked at the negligence shown in my treatment but the honest truth is they will stick to tsh and levo route. They are not going to risk their early career by thinking for themselves x
That is shocking. I saw a Registrar Endo yesterday at Queen Elizabeth Hospital Birmingham to beg for my 6 months supply of NHS T3. I got it. But the Registrar actually asked me questions I've never been asked before; and wanted me to put my arms straight out to see if any tremors in my hands. He looked fairly fazed though when I said there won't be any T4 in me as I'm on T3 only, when he was talking about my previous blood test.
my endo always asks me to do that as he says only real sign of over medicating and the shbg test for tissue saturation, he is aware we can alter tests but missing a dose of t3 but shbg doesnt lie. I get 3 monthly prescriptions which is a bore and i am trying to get him to agree to annual blood tests and appt.I was asked by english chemist once why i wanted it and what for??? i said mind your own business or phone my consultant later as i am in a hurry!!! i said i was concerned a dispensing chemist didnt know what t3 was for hahahahaha i walked out as he spluttered he did blah blah....i really am quite rude sometimes.....
I cannot work because of hashimotos. If I have a "good" day and overdo things (and by that I mean maybe go grocery shopping and not have a lie down), I really suffer the next day. I managed to get ESA and won at a tribunal to appeal when they decided I was fit to work. However as I have savings I am not entitled to anything at all, so am slowly draining all my hard earned savings. It makes me feel so sad that I struggled to work for 20 years, paid all that tax and NI, and when I need help am not given anything at all. They agree I am unfit to work, but not fit to have any financial help. I wish I'd just spent all my money enjoying myself rather than saving most of it.
Ps. I do realise I am lucky to have savings really but also am terrified about the future when they run out. I would dearly love to be able to work again. It's so sad reading about everyone's experiences.
I too survived on savings then finally fell on to ESA, the assessor understood my condition she knocked at my home the same evening and left me a full Aldi bag of fresh food. This year the assessor should have just said stay at home I'm gonna make it up anyway. I went from max points to nil points
Even down to the blood pressure reading, I have readings on home machine before and after usual morning and evening record for GP as I'm on heart meds as well, all of which he said that I don't take meds for. I'm now on a merry go round in the system that's designed to finish off people with long term conditions. Everybody really sorry but tell you to call someone else, who will be able to help, then they tell you they can't you need to climb Everest first.
The P45 landed before the assessment results and so did the lengthy Council housing benefit email asking for letters from family and friends stating if they were funding me or not. WTF
Summary: there fit for work standard is as good as there use of physiotherapist to conduct an assessment on an individual that is being treated by a top cardiologist in a specialised HIV unit run by a leading professor and a GP of 15 years. They can't all be wrong
i still believe I'm under medicated on 100mcg but had bloods done last week but I'm not sure if I took my pills before blood drawn, my memory is so bad, yet they say I have no problem learning new things, it's so bad I stopped the Gabapentin thinking it was that but it's the same but all the bloody neuropathy is back as evil as ever. I struggle with the date and things I'm asked to do.
I read I should take pills before blood test so when I go and collect the results I'll just get them done again straight away.
So I'm wasting all the NHS resources requesting detailed medical summaries for a mandatory review.
It sounds to me J1972 that you need to get your hands on some T3 to try. I haven't read your profile (if you have written anything) and it's 3:02hours (!), but enough is enough. Could a family member or friend pay for some T3 from abroad for you? It sounds like you have been struggling for a long time - time to change tactics? All my replies lately have been cynical, controlled angry, sticking two fingers up at medics of all types. This illness and being left to rot makes us like that. x
This is terrible how can it happen? I feel so sorry for people in such a difficult position . I count my blessings because I’m married , that’s given me security . Had that not been the case I would be the same as others on here. I was unable to work so had to give up on what might have been. A career I loved and mourned the loss of.
As others little social life , short breaks in this country, I know I’m lucky.
A life lost to this illness . What can w e do, there must be something !!
I agree with all of the above. I have lately been reading my old medical records in light of what I have learned on here, my early doctors missed the boat. I attributed all my shortcomings over the years to other health problems, dyslexia, etc. that you don't dare speak of. However I am mindful my companion's wife died of Lupus which was not diagnosed in a timely manner, his mother-in-law's surgery was bungled, she lost her life. My companion's multiple myeloma was diagnosed too late to save him. He had been seeing his primary care doctor every three months for diabetes even. After reading your posts it makes me wonder if any of the medical school faculty are sober. Maybe we need to lobby for more healthcare sobriety testing ...
Addition: I read a number of years ago the local teaching hospital wanted to test older doctors in particular at their facility to continue their privileges there. I don't know if the proposal quietly fell by the way side, it wasn't popular! I think afterwards the newer medical discipline of "Hospitalists" came along & got some older doctor's off the hook.
I have said previously, I would be willing to chain myself to Parliament railings to get this message through. With a few hundred others - not alone! I would so love to be locked in a room with Jeremy *unt and ask him a few questions.
perhaps a bit late commenting but I've just reached the point where I'm selling my home to pay for my health! I can identify with so many of these posts and it makes me feel so sad that so many of us are struggling to survive. That's how it feels. Heat or eat! Almost beyond that. But for the kindness of friends not sure where I'd be or will be.
I know I've gone years undiagnosed because I've seen my tests going back to 2003. Armed with more knowledge now with the help of great people on this site I'm giving the NHS one more crack at the whip with a different endocrinologist in a different area who specialises in some of the aspects that can be associated with Hypothyroidism.
If no joy I will eat in to what I get for my home.
Good to read about other peoples situations. Don't feel so alone.
Sallybones You said : "but I've just reached the point where I'm selling my home to pay for my health! " Please please think long and hard about selling your home. Try your very hardest to somehow keep it and pay what you can to get your health back. I know from my own experience that if you really cannot work it's impossible to pay a mortgage. My T-shirts were falling out of the cupboards! But I often sit and wonder if there was any way at all I could have kept my own house. The crunch point is certainly when there's no money coming in, unable to work for money, and everything crumbles. At the time I was well under pension age & because GP said "nothing wrong with you, your meds are correct, your blood tests are fine" I was not entitled to any benefits whatsoever. Side note : I've since seen my medical notes from when first diagnosed, and my meds & blood tests were not fine. Try to beg borrow (and steal) from relatives, friends, etc to pay for your medical stuff. I can assure you that once a house is sold, and equity money in the bank, it goes so incredibly fast. Then there's nothing. By the way, perhaps you could get your medical notes - mine cost £50 - to check you aren't in the same situation as me, regarding doctors saying blood tests are fine but they are not. Good luck x
hi marigold22 thank you for your lovely kind reply. I really am at the crunch point though and I think it will actually free me up to move forward and out of the NHS system (unless my new Endo at a respected teaching hospital proves otherwise). I count myself lucky that I have something I can fall back on really. After at least 15 years or more of worsening health (62 years old now) I can't wait any longer and see the next 10 to 20 years, if I'm lucky, pass me by. Conditions being diagnosed now are things I can't do much about (eyes and heart) and it's scary and I start wondering which bit of my body will be next.
I've really been there, seen the film and got the t-shirt. My GP has been supportive and often referred me on but no-one ever puts the jigsaw together so have done much of the ground work myself. Even when I was diagnosed with uterine cancer I didn't in fairness have the 'typical symptoms' but I just kept going back and saying I'm really not well. Lucky I did otherwise I may not be here now. I keep saying 'lucky' about things but perhaps it's survival instinct or something.
One thing I will do thanks is to get all my medical records. I've got them as far back as 2003 as I had to go to a ESA tribunal again. Suceeded on appeal yet again!
I can see myself having to buy T3 so will need the money. I already buy other 'meds' ie D3, B12, as I need to avoid additives / colourants / preservatives wherever possible.
You've started a really good post here. I shall keep following you marigold. Reading about other peoples situations is so encouraging.
cheers sallyb
maybe I will update after seeing new Endo. Got to have x-rays, blood tests and another DXA scan before first appointment, whenever that may be!!
It's a long arduous journey - but this forum is the best thing that happened to me. I would probably be bed bound or even dead without it. From what I've watched on video of the amazing Dr John Bergman, the other illnesses apart from thyroid, are the body trying it's very best to get itself on an even keel.
(I hope you can open that link) Link to begin you on the Dr John Bergman journey - beside each of his videos are lists of others ; I just love his work.
I suppose though it depends whether the thyroid problem or the heart problem came first. I'm guessing the thyroid problem. Regarding eyes, I've found that my own eyesight is much improved with higher dose of T3 (I only take T3) and a variety of vitamins & minerals. Not sure which vit or min it is improving my eyes; it could well be the higher dose of T3. So, in fact, your statement "things I can't do much about", is not correct. You are no doubt under medicated, possibly low in vits & minerals & my own eyesight shows it can be changed. I also do believe that you can improve your heart condition with the correct thyroid med & supplements; and clean diet.
After my personal fiasco of having T4 chucked at me following diagnosis in 1981, and feeling worse & worse over a 14 year period, I would highly recommend you get your hands on some T3.
Also I would say, please don't get your hopes up too much about a private Endo. I moved to Birmingham in 2006 to be near the Queen Elizabeth teaching & research hospital. In the hope of getting answers and recovering my health. Well, the first Prof of Endo I saw (OMG I would so love to name him here), absolutely insisted I went back onto T4 after the renowned private Dr P told me I had to have T3 as my body couldn't convert. Would an NHS Prof of Endo believe a private doc who had been before the GMC but who had found & read old medical papers on the thyroid? Absolutely No. And that Prof of Endo nearly killed me.
I could go on & on Sallybones - I've learnt so so much over the last few years mainly from this forum.
thanks again marigold for the link to Dr Bergman. It all really helps.
I know where you are coming from and that's why I say that this new Endo is my last go with the NHS. My GP actually started me on Levo at the beginning of November. Very low dose as she does understand my problems with medications ie I don't tolerate well at all.
However even with slow increases I was getting my usual reactions ie awful anger build up to the point I could fall out with myself. They mess with my head terribly. My GP can't prescribe anything more expensive and admits her limited knowledge and agreed to refer me on again to a different consultant I found by reputation. (We shall see). It's all trial and error and that's the approach I've adopted really.
However I do believe and I've said all along to which ever health person I've seen, that all my problems have a common denominator.
A couple of the many problems I now have that I say I can't do a lot about are Dry Macular Degeneration (no cure yet) and an electrical fault with my heart, awaiting follow up cardio appt. Osteoporosis I can with exercises & diet, begin to address, when I have the energy. I wasn't overweight till the end of last year but put on nearly a stone in 4 months!
Making headway with some things. Gut motility test showed very, very slow motility. No signs of cancer or blockages. Been G Free for quite a while now.
Tear in shoulder tendon and bursitis. The list goes on really. Like your body's breaking down in front of your eyes.
Anyway all hope is not lost - yet. The best help I've had over B12 issues was outside of the NHS and info from PA section on here.
I suspect I don't convert T4 to T3 but will have to wait and see. Some suggestions from blood test results are it could be Secondary Hypo involving Pituitary gland.
What relates to your original post is that I lost my 15 year relationship to this, my work, my independence, my savings, got in to debt. Also will have cost the NHS and GPs thousands more in the long run.
What originally is an invisible illness causes people generally to be dismissive of you.
Hey hey another year goes by!
cheers SallyB
marigold22 if thyroid patients think that the new NICE guidelines currently in development will improve their lot then perhaps a reality check is needed.
The draft NICE guidelines for Lyme disease have been published which means that the stakeholders and general public are able to comment. So far NICE have broken their own rules, for example on the morning of publication of these draft NICE guidelines the Royal College of General Practitioners issued a press releases praising these Guidelines. They clearly had been given a copy before publication as there was no way they could have read through such a huge amount of documents so soon after they were published.
As an aside, an article appeared in Pulse stating that these draft guidelines had been published. The Comments included a health care professional saying that "NICE were kow- towing to the nutters". There were plenty more comments of that ilk.
A Lyme disease charity in conjunction with the Royal College of Practitioners devised an e-learning course for health care professionals. It is not compulsory. Less than 3% of GPs have undertaken this free course.
The Deputy CEO of NICE claimed that Lyme disease is "easy to treat". You couldn't make it up.
A laboratory test with a sensitivity of 41% is represented as "high sensitivity".
One stakeholder has called for the draft guidelines to be ripped up and the committee discharged.
The remit is clear, sweep Lyme disease under the carpet and for those who don't recover there's always the head doctors.
Thyroid charities beware, you may be stitched up too.
I was diagnosed about 10 weeks ago. I had been going to the doctors once a fortnight for three years and other than alienating every doctor in the practice I got nowhere! My TSH level was tested over 12months ago by a consultant and was 2.03 (within normal range) so no further action was taken. 10 weeks ago I happened to mention to my doctor that I had gained over a stone in a very short space of time but was barely eating and this prompted her to test my thyroid. My TSH was 13.8 and my T4 was 8.8 (no longer in range). After reading the many posts on this forum it occurred to me that had they done a full thyroid panel in the first instance, 12months ago the problem might have been picked up sooner.
I was forced out of my job due to all the time I had off on the sick and forced to take early retirement against my wishes. But the bigger impact to me was the three years I lost because no one ran a proper test on my thyroid!
If we were in a car accident that was through someone else’s negligence and we lost our jobs as a result then we would likely receive adequate compensation. However when many doctors are negligent in their approach to our care we have no course of redress? It’s so unfair! I think it will take a test case in the courts before we start getting the appropriate treatment. 😜
Hi Sallybones, you should be able to see a reply box below someone's private message in the 'Chat' section. I don't know how badly your MD is affecting your ability to see the screen, but the HU interface isn't great for people with visual impairments, especially since the recent re-design. Do you have any low vision aids?
I'm very worried indeed by the number of women on the forum in their 50s and 60s who are facing financial destitution as a result of delayed diagnosis and inadequate or incorrect treatment for all kinds of conditions. I was wondering if you had considered a form of equity release, rather than selling your home? There are different ways of doing this, and they each have their pros and cons. There's some excellent information on the Which? (Consumers Association) website. If you can't see all of it without becoming a member, just let me know, and I'll copy-and-paste any information you need with my own membership access.
Hi Hillwoman thanks for the info re chat reply and that link and yes I can see all the article. Food for thought! That was very kind of you.
Again like everything else I need, like the vision aids you mention, I need the money first. I do need a screen for the computer although I have it on the lowest brightness setting. Often watch TV with my sunglasses on!
I have UVB ray allergy too and limit screen time now. Seem to be damned whatever I do ie sun needed for Osteoporosis but bad for MD etc. Feels like my body has turned against me and needs factory reset!!
I have to say I preferred the original HU interface. It was much easier for me to read and navigate. I don't like the other extra bits that have been added either, that you can skip. Just find them irritating. I'm one of those who 'if it ain't broke, don't fix it' people.
There must be quite a number of us who are in this awful position of financial destitution judging by the posts on here. Although I can't work for various reasons, I'm one of those who now won't reach pension age till I'm 67 and probably have to keep fighting for my benefits till then.
It's really good and helpful to read about other peoples lives and situations and any successes of course.
I have just emailed Lyn Mynott directly with a link to this Post. I don't think it would be helpful to carry out a questionnaire. She really needs to bring this situation to the notice of a person or body who needs to be aware of it. But perhaps Lyn will be too busy already and not be able to do this
I believe we (US) have lost many of our rights to believe we lead the world in anything! Our years of arrogance are catching up with us. Sadder even, is the beaurocrats who bear much responsibility still have their money and luxurious living style. It's the rank-and-file who are bearing the brunt for so many things. Especially ineffective health care.
We are paying to live If we do have a petition i really hope that there would be thousands willing to sign it we all stick together then i think something could be done.
Londinium if there was a way for us all to your forces as a collective to start protesting, the thyroids, the B12's, the ME/CFS, the fibro's we would make a big force to be reckoned with....
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Finally an endo who listens!
Suppressed TSH linked to stroke?
Atrophic thyroiditis
Just venting about annoying people
