IS THIS HOW IT'LL HAVE TO BE???: I most certainly... - Thyroid UK

Thyroid UK

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IS THIS HOW IT'LL HAVE TO BE???

LadyBarb
LadyBarb

I most certainly hope NOT..!

My cousin's friend, always 'heavy' but who became ever increasingly huge, had been repeatedly tested for Thyroid problems. All her results were "within range" (how damn common is that theme!)

She finally and suddenly flipped. Went so 'nuts' that she ended up in a mental institution, in a padded straight-jacked, she was so bad.

Within days, she was suddenly 'diagnosed' with Hypothyroidism! Miraculous, considering her Thyroid 'test' done the week before she 'lost it' in a major way, came back "within range".

It's a route I'd personally prefer not to experience ~ to get so very seriously ill through damn 'negligence' ~ and I'm sure that the considerable number of us who have test results which are "within range" but who have every 'symptom' of being Hypo would NOT choose as a "future", to get the correct Diagnosis from the so-called medical professionals.

Thankfully, my cousin's friend has responded very well indeed to Levo ~ and is now relatively "sylph like" and feeling better than she has for countless years! :)

How can we stop this madness..!!! It MUST be stopped..!!!

37 Replies
oldestnewest

What a sad story and a terrible indictment. I'm glad to hear that she is being treated at last, with positive results.

LadyBarb
LadyBarb in reply to scorp1o

She (sorry, don't want to use her name!) went through hell. Thankfully with a happy outcome ~ but it should never, ever, have come to that terrible stage. She's not into computers, so she'd no real frame of reference and just took her doc's word about having 'normal' results, but could get no answer as to why her weight was relentlessly increasing.

It's way beyond time that doc's "got a grip" and educated themselves about how to diagnose Thyroid problems properly!

Justiina
Justiina in reply to LadyBarb

I agree, it never ever should get that far and she was lucky to get levothyroxine instead tons of ad's and diagnosis that will hunt her down to ever after.

If you could guarantee everyone turning up then a visit to Downing Street would be the best. Would have to be 1000s of us though not just a couple of hundred!

What we need though is T3 and NDT to be prescribed not just the T4 option as that leaves many of us as sick as with no meds.

We could then all flip together 😂

LadyBarb
LadyBarb in reply to Katepots

Totally agree! Love the idea of us all 'flipping out' at 10 Downing Street though!

We really have to get this story publicised. Get some media student to make a short film about it.

It's disgusting.

I am self medicating and well and working after my doctor said I was "fine" but I couldn't get out of bed. Levo brought my TSH in line but did absolutely nothing for my symptoms.

There are hundreds, maybe thousands of us either

a) undiagnosed untreated

b) diagnosed with treatment not working

c) self medicating against all medical advice

I actually don't know one person in our community outside these three groups.

We seriously need a documentary, and a mass survey.

And possibly a Euromillions syndicate to start our own research and treatment centre.

You cousin's friend should sue. She should get an excellent expensive lawyer find out what it will cost and crowd fund it. You should post the links on here so we can all support.

Angry, so angry

LadyBarb
LadyBarb in reply to Redditch

She'd never agree to publicising what happened to her, very unfortunately, although I SO wish she would. I do believe she feels it's her "shame", not her bloody doc's "shame". Grrrrrr ...

I get it that there are 'hundreds, maybe thousands of us' in the 3 categories. Personally I fall into both a) and c) and there's quite a number of us trying not to take the flip out route. Unfortunately, this route can't be NHS based, but is largely self funded, unless an understanding doc is found.

The whole thing's a scandal.

Eddie83
Eddie83 in reply to Redditch

In the US, there is a woman working on a documentary about thyroid mis-treatment. Sick2death.com.

How sad! That is why it is so important to ask for print outs of test results. But how would we know to do that? I certainly didn't all the years I was told my thyroid results were normal. When I was finally diagnosed, like many people, I was so ill I could hardly function.

LadyBarb
LadyBarb in reply to lisabax

If I hadn't found this site, I'd have had next to no knowledge at all about what to do apart from just accept what my doc had said ~ but with my mother's thyroid history with "normal results", she was dying and a locum who made a house call had her in Hospital within half an hour (quite something 'back in the day'!) ~ and then "miraculously" my mother was suddenly diagnosed as having hypothyroidism!

The sort of situation with which you're sadly not unfamiliar, Lisabex <3

I've no desire to be a victim of 'death by doctor', so I'll do what I have to do without informing my unsupportive doc! It's my life she's messing with, so she doesn't get any further input.

I'm so grateful for the many very well informed people on this forum, who so generously and freely share their experience and knowledge with all of us who come here, confused and baffled about what's the right 'next step' ~ and who give us hope and a way forward.

Did she ever have her thyroid antibodies tested when they said she was in range?

LadyBarb
LadyBarb in reply to Starfish123

I've no idea Starfish ~ she just believed what her doc said about 'normal range / normal results'. She didn't know she could ask for a copy of her blood results: neither would I, if I hadn't found this site. She's not into computers. She treats docs as though they're gods!

Starfish123
Starfish123 in reply to LadyBarb

I had normal bloods for over 20 years of testing, it was only after I saw an Endocrinologist that I had an antibodies test, my TPO antibodies confirmed autoimmune hypothyroidism, hasimotos in other words. Drs don't normally test for it unless you specifically ask and even then can be reluctant. It's funny but if we were in Germany or America we would all be diagnosed much earlier as their range ends much lower about 3 for TSH.

I too was years of being told I was fine and being made to feel like a hyperchondriac. Then was eventually just put on Levo and made to think this little pill was all you needed forever. No info given on hypothyroidism and certainly no mention oh Hashimotos. Let alone any other vitamin deficiencies. Only through a couple of years of study, self testing and self medication have I now got well all against the advice of my GP!

LadyBarb
LadyBarb in reply to Katepots

I hope to follow your example Katepots, with the help of this site and definitely against the 'advice' of my GP! Any advice you wish to share with me will be very welcome. :)

Katepots
Katepots in reply to LadyBarb

That's the lovely thing, we all want to help each other.

I'll do my best to help if you've ever got anything you want to know please just ask but I'm still learning too! X

I was crawling to the loo and pretty much semi conscious when I was finally diagnosed, having been in the subclinical group when I had to start 'living' in bed. And despite that state my husband still preferred the GP surgery whilst I was clinging on to the thought of A&E. And he made an appointment!

I had previously been treated as if psychiatric care was really more suitable for me and given that good psychs. do actually appear to want to exclude other reasons for such episodes perhaps we should be applaud them for this final safety net whilst condemning all other practitioners for negligence. But so sorry to hear about your friend. Amazing isn't it that almost every other speciality is aware of thyroid diagnosis and treatment but our GPS and endos seem not to apply this or even to have even studied the subject. Give me our panel of expert patients any day over the people that are actually employed theoretically to help us.

LadyBarb
LadyBarb in reply to cwill

I despair when so many people put their total trust in doctors. They're not gods, they're just people with good memories, most of whom are too lazy to upgrade their own knowledge and who leave their patients no place to 'go' apart from to trust that 'they know best'. That's abuse!

Do docs EVER hate anyone with an enquiring mind, who decides to research their own illness and seek help via the Internet. I can't count the number of times I've heard of ill people being told to 'keep away from the Internet' ... my doc knows that I will use it, she just won't be advised of the results ever again!

I'd never quite seen Psychiatrists as a final safety net ~ I'd only ever met with one once, and he needed a psychiatrist all to himself. I'd thought he was a patient when I met him in the lift and he was sweating, looked as though he'd slept for a fortnight in the same suit, and kept dropping things which I'd kept picking up for him. He just 'grunted' rather than say thanks. I really thought he was very ill.

I had asked to see a Psychiatrist as my Fiance had died and I 'felt' he was calling me to join him. (I was deeply in grief to say the least!) The 'tramp' who was the Psychiatrist started asking me did I really believe the reason I'd been given by my Gyn Consultant as to 'why' I couldn't have any children..???!!! I won't repeat what I said to him.

He'd the nerve to send me another appointment ~ which I informed my then doc (a human being with no god complex) that I wouldn't be attending, and he did make me laugh at my 'experience' ~ but I appreciate what you're saying about them being that last line of defence and the service they gave my cousin's friend. She got her much improved life back! :) Long may that continue.

I'm with you though ~ I'd far rather have our panel of expert patients any day, than entrust my health to docs who are, 'theoretically', supposed to help us! B xx

Espeegee
Espeegee in reply to LadyBarb

You've made me chuckle! My daughter nicknamed her psychiatrist Cold Fish for his total lack of emotion. She was in bits with depression and 2 small children and on her own. She agreed to see a shrink, a man in a suit who had little interest in either her issues or trying to unpick what caused them just prescribed paroxetine and each time she saw him he asked "How are you today?" But never listened to her. I was there for her last visit, he had a student in with him! Usual routine, when she said she still felt bad he said he would up her dosage, again! I asked what he'd done about her request for anger management, he said oh there's a very long waiting list for that. I replied that the sooner he referred her the sooner she would be seen! He never did. She never went back and went cold turkey off the tablets because she said they made her feel like a zombie. These people are paid very big salaries to sit there and be totally ineffective. With family support she eventually turned the corner and is so much better although I doubt she'll ever mend fully.

Oh dear God .. what a dreadful situation !

I'm so glad it's turned out well for your cousins friend .. and I hope she will enjoy her new Good Health forever .

It's a disgrace .. after one of my blood tests before Graves' disease diagnosis ...I phoned the surgery for the results ..

Receptionist told me everything was NORMAL .. but I wanted to know for sure and had her ask my doctor for a printed copy

When I collected it a day later it read along the top

* ABNORMAL *

So much for communications and care from ( some ) receptionists

💐🌸 ... for your cousins friend

Mx🌹

LadyBarb
LadyBarb in reply to madge1979

It was an horrific situation Madge and it should never have happened..! However, my cousin's friend got to the right person to help, sadly in the wrong way. I'll pass on the flowers and good wishes! Thanks :)

No wonder some doc's moan that they're run off of their feet. They're keeping, and frequently making, their own patients ILL..!

Just as well you'd the wisdom to ask for a copy of your 'normal' results to be sure. How on earth could some idiot see "abnormal" and say "normal"..!

I'm now going to ask for a copy of my additional blood tests, as opposed to asking for the results over the phone. Lesson learned, my thanks to you..! B xx

cwill
cwill in reply to LadyBarb

I made the mistake of delegating the call to get my results to my carer. I had already got 'normal' but wanted the actual numbers and the ranges. Carer eventually got it, and has maths A level so shouldn't have been too much of a challenge, but the recpetionist when repeatedly asked to simply read everything relating to the result could not simply read out what was there, let alone worry about interpretation. Also told me via carer that I couldn't have a print out. So rest ruined as I had to make two more calls with the carer to get very angry that they can't read a set of numbers. It really shouldn't be this hard...

madge1979
madge1979 in reply to LadyBarb

You're sweet

Best of luck

Mx🌹

Hi what a terrible time your cousin's friend must have gone through so glad she got the treatment she needed in the end no thanks to her gp. Psychiatrist seem to be more knowledge about thyroid than gp's or endocrinologists why that should be so god knows.i had a similar problem after I had Rai, was left for months before having a bloodtest to check thyroid levels even though I'd been to gp numinous times with hypo symptoms given antidepressants and water tablets ended up cycotic and was taken to mental ward it was there that they realised I had myxoedema madness and sent to hosp for treatment but it took me two years to get over it. I just think ours is the forgotten desease and we are left to get on with it and it's a disgrace.if anyone wants to organise a march to downing Street I'm in.

LadyBarb
LadyBarb in reply to Raventhorpe

Absolutely no thanks to my cousin's friend's doc, who made a bad situation worse, time after time after time! Unforgivable.

The pattern's appearing that Psychiatrists "have to" know considerably more about Thyroid problems, as GPs and Endocrinologists aren't up to speed, or all the Psychiatric facility beds would be full of 'flipped' untreated Thyroid patients ~ like darker ages, when Thyroid sufferers ended up being confined, untreated, in Insane Asylums, for life! (Maybe that black history gives Psychiatrists considerably more empathy for untreated Thyroid patients?)

It's a dreadful case of 'pass the buck' and if/when someone 'flips', oh well, the Psychiatrist can pick up the pieces! That's abuse of the system, and total abuse of patients, isn't it just..!?!

Why aren't Psychiatrists even shouting loud and long about themselves and the NHS 'system' being abused, and the total abuse of patients?

It's NOT alright to let a sufferer of Thyroid to go insane. It's sheer negligence on so many levels. Docs should be able to be sued over this ... but conveniently they've been given massively wide 'normal ranges' to hide behind and are totally complacent..! I recall there was a big deal about this in the late 1980's (probably before that too), but little, if anything, was done about the situation.

You had a truly horrific time too Raventhorpe ~ and having had a happy event in your life, you were so badly treated, and a two year 'recovery' time out of your life after you did get treated, to get back to where you'd been, is a total nightmare. I'm so sorry you had to experience all of that ~ it's so very, very sad and was totally avoidable if your doc had just paid attention to you.

B xx

Hypothyroidism - how I wish I'd been diagnosed with Diabetes, type one or two wouldn't matter - the point is, I'd be RECOGNISED, and importantly, treated and cared for by the medical profession. As it is, hypothyroidism is the diagnosis of the dead. WHY? How can it be that despite clinically possessing all the signs and symptoms to be found in medical textbooks for HYPOTHYROIDISM, patients remain invisible? An irritant. Something doctors must deal with, get rid of, but for goodness sake, NOT diagnose or TREAT. I - [and my then longstanding GP, now thankfully retired] - were taught by the same Professor of Endocrinology at a well known London teaching hospital. I - [so presumably him as well] - fully understood both Hyper and Hypo 'thyroidism'. Indeed, for many years as a senior nurse in the NHS, I took pride in my ability to mentally diagnose patients who came through my hands in clinics specialising in Women's Health. Would that I could have treated them, but that is the doubtful privilege of doctors. I have a wonderful memory of a patient who I'd sent to her GP with a list of questions for her to ask, regarding her thyroid. A year or so later this dear patient returned, exuberantly happy, diagnosed and treated for Hypothyroidism and feeling WONDERFUL! Her gratitude to have been effectively diagnosed by a nurse was embarrassingly fulsome as I was hugged, kissed and twirled around!

SOOOOOOOOOOOOOOOOOOO. Why is it that this medical condition now apparently no longer 'exists'? Why is it that so many doctors are so embarrassingly ignorant? Wilful or otherwise? Is it actually the policy of their professional body that they should behave so unprofessionally in failing to treat their hypothyroid patients and if so WHY? The WHY for this unforgiveable position patients find themselves in is crucial to understanding WHY we are WHERE we are. I am mightily blessed in having an independently minded GP - a great rarity - who is knowledgeable and interested in thyroid medicine - happy to learn from her patients too. I am extremely well cared for NOW - after eighteen LONG years of being 'within normal range' and left to rot. During that ungodly period of my life I had the unedifying experience of being referred to a consultant in endocrinology who confidently diagnosed ME. This was highly refuted by me so he kindly offered to refer me to a neurologist instead for at that time I was out with the fairies for want of T3. However, ME is the diagnosis for all 'within the range' who are referred for help from endocrinologists, or indeed, psychiatrists. Doesn't really make much difference which. Help is very rarely forthcoming for this is the thyroid gravy train for those treating patients driven by desperation, to become private patients. Be very sure, it is an utterly shameful state of affairs for a condition which can be so simply and inexpensively treated.

Hypothyroidism is an inherited, familial condition and this has been clearly demonstrated in seven women members of my family. My two youngest sisters both had glandular fever at the age of eighteen and, as is so often the case, went on to become hypothyroid. It took years and years for the younger of the two to be diagnosed but she was eventually treated with the princely dose of 25mcg of Thyroxine. Despite requesting, and then over the years begging for MORE Thyroxine, her GP refused. Her husband begged too. No matter. At her inquest we discovered that she had made several suicide attempts .......... until her final successful death by hanging. RIP

So YES! It is more than time for a national response to the uncompromising indifference of doctors, to their hypothyroid patients who have the temerity to fall 'within range' in the Reference Interval. ME is not the answer, nor indeed the cop-out diagnosis in the face of such unbelievable medical misery. It is a shameful indictment of the profession and it is time patients put a stop to such medical mediocrity by getting up and SHOUTING ....... ENOUGH! I personally campaigned for years and years for CHANGE, as have so many of my friends and colleagues ...... but nothing happened. I suppose the belief in the profession is that we can shout as loudly as we want but we won't be heard ......... that being their policy. Maybe we should rise in our THOUSANDS - ALL OVER THE WORLD - draw in the media, harness television channels and see if this makes a difference. This wonderful website is a blessing ................. but we need more, MUCH MORE.

LadyBarb
LadyBarb in reply to DollyCon

You, DollyCon, are my HERO ..!!! (or HEROINE, if you prefer :) <3

You've said everything that I wanted to say, and I'm delighted to be able to shout WITH YOU..!

GOING A BIT OFF TOPIC HERE ... BUT WILL GET BACK ON TOPIC ..!

OH! How I wish our paths had crossed some 29 years ago ... when I was diagnosed with M.E. / Fibro. Granted I did have a limited test for Thyroid, because of my mother having Hypo (how I wish I'd held onto all that old paperwork!) ~ was even given some Thyroxine, but it was at the same dosage as my mother was taking, and that wasn't 'low' and I felt spaced out and not in a good way. Anyway, my Thyroid result was within 'normal range' ~ need I say more? No, of course not.

Did I know any better? No, of course not. What did show up in my bloods was Glandular fever (which I didn't recall ever having had), and FluA virus and I hadn't had flu for years. I just got to feel flu'ish all the time. Utterly washed out.

Fast forward to me finding this site earlier this year. STUNNED at the close relationship to every flaming Hypo symptom with M.E./Fibro. So STUNNED I wrote to my GP about it. Given I'm now at the stage of being mainly housebound, apart from the occasional medical appointment, which totally wipes me out ~ and am mainly bedbound because it's about the only place I can get a little pain relief ~ I put it to my doc that surely investigating Hypothyroidism would be worthwhile and she did agree to the test ... which came back 'within range' and after that I swiftly became:

"An irritant. Something doctors must deal with, get rid of, but for goodness sake, NOT diagnose or TREAT."

A doc I'd had a reasonably good, friendly relationship with for nearly 17 YEARS turned on me like a viper..!!!???

There was more *stuff* as you'll probably understand all too well ... but I'd said the Thyroid word and her ears were totally blocked.

I've been writing the responses to my Post and shaking my head, as I felt that I was beginning to see / build a 'CONSPIRACY THEORY' ~ but the more people have shared their own horrific experiences, there IS a 'conspiracy' of some sort going on.

I offered to go privately to see an Endocrinologist ~ I was refused a 'referral', even after saying the doc could 'specify' an Endo she trusted.

I offered to pay privately for further blood tests ~ anything that would clarify the situation. I was told that non-NHS blood tests would NOT be accepted and I wasn't getting any more blood tests from the doc. (Naively, I didn't realise that of course the NHS outsource certain blood tests! One of my more "D'uh!" moments.)

Previous to these weird turns of events, I'd have been right with you ~ on a back-door 'privatisation' of the NHS. The total 'gravy train' of (this, for one) desperate female to find out if I've spent 29 years of my life suffering unnecessarily and that I've had Hypo all the time and to see if I could get at least some of my health back, I'd have paid rather a lot! My mother was dying from Hypo and had still been getting 'normal range' thyroid results.

Something relatively easy / cheap to treat, and the doc wouldn't even give me a trial treatment to see if it would help me to 'live a bit before I die'..!?! I got a statement to the effect of she'd been reading some medical magazine which indicated that Thyroid was the 3rd most mis-diagnosed illness in the WHOLE WORLD. ('Scuse me ... but REALLY ... WTF..???).

I've deeply researched what she said, and I do believe she totally dreamt that one up, off of the top of her head..! And, what about the people who are treated and get their life back..??? Is that a figment of their imagination ..??? A 'placebo effect'..? And, who the heck is getting "diagnosed" and what dreadful state have they reached, with the mile wide 'normal range' these days. (Apologies, this *guff* gives me a headache and is totally mind-bending.)

I can't even begin to imagine what it must have been like for you to lose your sister to what equates to TOTAL medical negligence, arrogance, and wilful ignorance ~ and for you to have such a working knowledge of what would have helped her, and to have had to witness her being denied assistance / medication / basic human 'rights' until being kept so damn sick became totally intolerable to her.

I know I'm very tired, and I know I'm rambling, but I "think" I vaguely heard a 'penny drop'.

People diagnosed with Thyroid are on it for *life*.

Is it as simple a matter as 'follow the money' (yet again!) ~ AND THE NHS CAN'T AFFORD TO HAVE PEOPLE ON MEDICATION FOR "LIFE"..???

IS THYROID MEDICATION TOO EXPENSIVE TO FUND FOR ANYTHING BETWEEN 20 TO 60 YEARS, depending on the age of the sufferer when "rescued"..?

Getting back to my Cousin's friend. She could have killed someone, or herself, in a car crash, she was so 'off planet' . Fortunately she "only" trashed everything in her flat, then tried to trash anything she could get her hands on inside and outside, at which point the Police were called and details get a bit vague there, however she was seen by a Psychiatrist and 'sectioned'. And so began her return to healing via much desperately needed medication.

I know she won't speak out ~ she's back living with her (ex) husband, the large house, the dogs, the fancy car ... all the trappings of life which she'd lost and won't put at risk. She'd hit her Thyroid 'rock bottom' where she'd lost hold of even the tiny corner of the blanket of her Sanity she'd clung onto so very desperately ~ and gotten 'normal results' bloods.

I'm actually wondering if the NHS actually 'do' blood test results ~ or just fill in figures to show results in the 'normal range' and who'd know the difference? With statements like "non-NHS blood tests won't be accepted by the Medical Practice!" then there's no way to prove that one way or another, which will be accepted.

I'd love to discuss all this at some point when my brain isn't total mush ~ as we DO need more than what we currently have ~ awesome as this forum is.

Unfortunately as Raventhorpe mentioned ~ most of us are kept so unwell, that could be a bit of a "challenge" ~ but I don't know the degree of difficulty? (Ignorance is bliss in this particular matter!) :)

May I suggest that you start a new Thread using the email you wrote to me and see how much that stirs things up? B xx <3

dollycom well said!! What a wonderfully inspiring post, I just wish we could all get together and make people listen to our plight but most of us are kept so unwell that I feel that could be very difficult.

The patient has to be smarter than the doctor.

LindaC
LindaC in reply to Eddie83

Agree Eddie83, but feel bound to say that with hypothyroidism it wouldn't be difficult :-(

my thyroid apparently tested just fine for 6 years after it was removed, i do not trust the tsh test and no longer trust doctors. Nothing surprises me anymore xx

LadyBarb
LadyBarb in reply to Binkie

Couldn't agree with you more Binkie! B xx

LindaC
LindaC in reply to Binkie

Wahhh - it is an outdated test that has likely never worked well for many - the inventor and UK devisor have said as much. Cheap way of fobbing most of us off.

I'm going to write about this as a post - too long for within another - thank you for liking.

LindaC
LindaC in reply to LindaC

Eek, sorry - I'm sitting here freezing (x2 tops, x2 pairs trousers + thick fleece and back to winter furry clogs) in a 25.9 C heated house with everyone melting :-(

I meant... the G-Grandmother thing I posted here, I'd put separately! Frozen :-( xx

I'm not sure the problem is No. 10, it lies with the arrogant toss pots (sorry!) who frame the treatment policies and who decide who should have what. So often they are professors of this and that whose learning and research has been funded by big pharmaceutical companies and who then tie themselves to their benefactors, seemingly forever. Their choices for us are then adversely influenced which isn't good news for us, look at statins and sugar! Because they are slow to change the rest of the medical profession has stagnated, unable to modernize unless they want to risk the wrath of their professional bodies (BMA for e.g. ). There is a slow swell out there led by the likes of Briffa (who sadly seems to have put down the torch now) Malhotra and others but they are few and the patients many so you'd have to tip up privately to see them and travel. When there is someone like Prof. Rory Collins in a post of much importance nothing is going to change.

I agree, what's to stop GPs googling and reading up on the better information that's always upcoming? If we can do it ...

LindaC
LindaC in reply to Espeegee

Oh, you mean those who simply "Can't afford to be wrong'!" or to be seen to have made a mistake? Met quite a few, not simply in medicine, but we do suffer particularly so when it is medicine.

"Of all your hormones, the thyroid is the most important!" - Dr Mark Starr (another one of my favourites).

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