Utter madness! A third of thyroid sufferers mis... - Thyroid UK

Thyroid UK

121,604 members141,912 posts

Utter madness! A third of thyroid sufferers misdiagnosed as being mentally ill

helvella profile image
helvellaAdministrator

Utter madness! A third of thyroid sufferers misdiagnosed as being mentally ill

ALMOST a third of thyroid disease sufferers are being wrongly diagnosed with a mental health condition, a study has revealed.

By Oliver Pritchard-Jones

00:01, Tue, Oct 26, 2021| UPDATED: 15:28, Tue, Oct 26, 2021

Research by charity Thyroid UK revealed that almost one in three (32 percent) seeking help because of the condition end up receiving the wrong treatment. Conducted with healthcare provider Medichecks, the survey found that 89 percent of people who consider themselves to have a thyroid condition have also battled mental health issues.

When combined with sufferers taking an average of 21 years to be properly diagnosed with the condition, it paints a pretty grim picture for those hoping for treatment, according to the charity.

To mark Thyroid Awareness Week, Thyroid UK highlighted the issue amid growing worries that more sufferers could go undiagnosed if the UK is forced into another lockdown this winter.

Rest of article here:

express.co.uk/news/uk/15114...

78 Replies

This is shocking & very sad.

That is utterly appalling. I don’t know why I’m so shocked at that statistic but I am. And I feel sad to read it.

Sad indeed, but it mirrors my journey and trying to get a diagnosis. It took so long I was lucky not to die of it. Good on Thyroid U.K. for this very important research and making it known.

Excellent thyroid uk highlighting this. I know from being on here for a while and my own journey how little doctors know about thyroid conditions but I’m still shocked to read this. Thanks for posting Helvella and keeping us up to date

Can totally relate to this helvella.

My GP diagnosed ‘health anxiety’ & tried to get me to take antidepressants (on more than one occasion). I refused, but did agree to see a psychotherapist. The CBT (cognitive behaviour therapy) was useful, but not as useful as joining this forum…. It was only by listening to advice here that I realised my deteriorating mental health was linked to being under medicated for my thyroid condition. I’m so grateful to members here …. that’s the main reason I’ve become a TUK Support Networker (N Yorkshire region), to help others in my area. 😊🦋😊

Kisca profile image
Kisca in reply to Buddy195

❤️❤️❤️

Zazbag profile image
Zazbag in reply to Buddy195

How did you become a TUK Support Networker, and what does that involve?

RedApple profile image
RedAppleAdministrator in reply to Zazbag

Zazbag, see here thyroiduk.org/help-us-to-he...

Not at all surprised! Over a 10yr period I was a ‘problem’, non compliant patient was mentioned a few times. GP even asked my pharmacist to take me to one side and tell me how to take my medication and why if I already do then it’s all in my head. GP also asked me to google bi polar amd fibromyalgia to see if any of those symptoms seem familiar! Gah! I could tear my hair out!

My gp offered me antidepressants as I sat crying in the surgery because I felt so unwell on several occasions 😔 I was referred to a thyroid specialist endocrinologist who was no help. Thank goodness for the lovely people on here is all I can say 🤗😘😘 Have I read somewhere that low T3 levels are a known cause of some mental health issues ? 🤷‍♀️

SlowDragon profile image
SlowDragonAdministrator

25 plus years ago ….

I was told I had mental health issue as I had “chosen to be stuck in bed or in wheelchair “

that I couldn’t possibly be hypothyroid as I was on 75mcg levothyroxine

At the time ….

TSH 3

Ft4 12 (12-22)

Ft3 2.1 (3.1-6.8)

Autoimmune thyroid disease confirmed with both TPO and TG antibodies extremely high

Vitamin D 12nmol

Ferritin extremely low

B12 and folate deficient

But GP and local diabetes endocrinologist said my total fatigue was “all in my head”

Psychiatrist disagreed, and on the strength of her glowing report, I got my (previously denied) referral to thyroid specialist endocrinologist

Severely under medicated…took roughly 2 years to increase levothyroxine dose slowly up to 125mcg levothyroxine and always same brand

Then in 2016

Gluten intolerance confirmed by private endoscopy

Heterogeneous Dio2 gene variation confirmed by private testing

Now prescribed 20mcg T3 daily on NHS after initial private prescription

Only with help and knowledge on this forum was progress since 2015/16 possible

Fedup5 profile image
Fedup5 in reply to SlowDragon

That is just about how I feel Left the old GPS because they took no notice of there Blood Tests when them telling the GP it wasn’t good enough the GP I asked if I could see a specialist for the Thyroid he said no I asked why he told me you don’t need to and it’s too expensive. So I started to try another GPS. Having been with this GP. For about 17 years I needed to get some help so I left them and came to see if I could join these GPS I now have been with theses GPS for 6 years I am so up set with these GPS. From the start I realised what they were trying to do the same thing has the other GPS. I have not got any where and I am worse for it I got told by one he had seen me going down bank for the last 3 years yet I saw him often and told you are looking well I said I don’t think so which I was he not he won’t let say anything about my Thyroid symptoms he’s already told me he won’t talk to me about the Thyroid for that and I don’t get any where with anything . I am just in so much pain and more all I end up with is nothing better No answers They don’t seem to know what to do about it so take it out of me for trying to help myself and just want answers not made to give up because that’s not good enough. I am sorry that this is so long Thank You all .

Thanks lynmynott and ThyroidUK staff for getting this out there.

If anyone had done my bloods instead of just referring me to a counsellor after my 2nd baby .. they would have almost certainly found an autoimmune thyroid problem .. as it was it took another 4 yrs for anyone to "Think Thyroid" .

when they eventually did (after 2 more attempts to offer me antidepressants without doing any blood tests at all) ... they found TPOab of 2499

"oh" ..... said the GP

"your immune system's eating your thyroid"

Doh .. i never once said i felt depressed .. i said i couldn't walk up the hill anymore and i didn't know why.

"Think Thyroid" ... i'd like to tattoo that on the back of GP's hands when they qualify .....p'raps we should write it in the shape of a butterfly ......

Makes me hopping mad but I was one of them... I was prescribed anti-depressants for years, before I saw the wonderful Dr Skinner & they all hounded him. My doctor still won’t accept Dr S’s diagnosis but he (GP) sees how much better I am. What will it take for things to change???

Thyroid17 profile image
Thyroid17 in reply to stiltzski

The wonderful Dr Skinner also helped me. My own GP ,of the time, said it was 'all in my head' and it was impossible to help me while I was 'in denial'. She also wanted me to start antidepressants-I refused. I got blood tests elsewhere which evidenced I was very hypothyroid. My GP had nothing to say as she did the second set of bloods to confirm, prior to prescription. If only they would Listen and Believe!

Do we know how many people responded to the survey? I'm curious about the number of people resorting to private testing. It would be great to know how many people across all the private labs......that would be quite a weapon for us.

This is in reply to Helvella,

Thank you for this link. Am I surprised? Of course not. None of us is…. What surprises me though is that so-called doctors not only are uneducated and extremely arrogant but also unwilling to accept they are wrong when they jump to the easiest conclusion for them, making the patients feel they are mentally ill when, in fact, the medics don’t understand much about thyroid problems (and much more).

It’s a quick solution for them to get rid of an “uncooperative, difficult “ patient. Also, sedated patients are easier to control and “dictate to”. Let’s face it, antidepressants is their first line of drugs they push onto patients for any problem they are unable/unwilling to resolve. It makes their lives easier. I for one, always protest and refuse. It’s truly appalling. Who do THEY think they are?

Thanks to Lyn Mynott and Thyroid UK for bringing this dreadful abuse and neglect of patients who need help into the open, at long last.

However, I wonder: Will doctors then graciously accept with humility they need to return “to school” and change their behaviour? I am not so sure….

Helvella Thank you for this post. So many of us can relate to this and more. Having high BP , weight issues, insomnia , fatigue, anxiety, palpitations, high cholesterol, allergies, hair fall outs, depression, fertility issues, muscle/joint pain etc . For each of these symptoms and more there is different meds that they (DR's) have scripts for. As we all know their incentive is to keep society sick and to keep them coming back for yet more meds. This is a crying shame inflicted on our society. When infect all these symptoms are *Thyroid* related. It's very simple .The name of the game is Follow The M-O-N-E-Y.

😱

Shocking to see it confirmed like this.

I’m another one who was diagnosed with depression (for the first time) almost thirty years ago. Makes me weep with frustration and anger.

Thank you for sharing this. As a clinical psychologist I have been utterly shocked by my treatment by the medical professionals, and sadly at time, some of my mental health colleagues/friends!

Now that I am back working I spend an amount of my time educating either clients or clinicians about potential undiagnoed thyroid conditions. I trained over 25 years ago and first line of my notes states ' underlying medical conditions must be ruled out before diagnosing anxiety/depression'. That's clearly NOT what is happening today.

Like everyone else - sad but not surprised. The NHS is clearly wasting so much money on not doing the basics. Just vitamin levels and none of this ‘normal’ range stuff would be nice. I was lucky with my GP (unfortunately retired now) who was honest by saying things like ‘our contract with the NHS to provide NHS GP services does not allow me to treat you for low Fe, Vit d, B12 etc but you are at the lower end of normal so look at supplements. Bless him!! The NHS seem to let people get to critical levels of vitamins which makes them seriously ill needing more urgent care!! Daft and misguided. Exactly the same with thyroid and low TSH and ignoring T3. Pfff makes me cross. And we pay NI for it too!

That is so shocking, thank you for sharing.This resonates with me too. I was offered antidepressants on 3 occasions, put on HRT (I was 42!) and told I just ‘have to get used to it’.

To think I lost years of my life, and the impact it had on my family, makes me want to cry.

This forum is literally a lifesaver. I can now tell my GP what to do, who is luckily not obstructive.

It’s so wonderful to have a supportive community. And I am still surprised to find people who have exactly the same experiences.

(tattybogle I used to feel like I ‘couldn’t walk up the hill’ and no one understood)

Hi

Sad, shocking but not unexpected, I'm sure doctors would like to label us as hysterics if they could get away with it. Slaves to our hormones and over-emotional.

I can't help but feel that because thyroid issues mainly, but not exclusively affect women, that it's just easier to fob us off and make out that we're attention seeking, menopausal or depressed. Rather than doing a simple blood test.

I had a friend who had bipolar and complained of stomach problems, she got dismissed, probably because she had a MH "label" and everything was blamed on that. By the time it became apparent something was wrong and it wasn't her head, it was too late.

They discovered stage 4 bowel cancer and she died 2 months after diagnosis. I'm still really angry about it.

Thanks helvella, doesn’t surprise me at all. I know by the time I was diagnosed with Graves I was on my knees and felt as if I must surely be mentally ill - although to give my doctors credit then never said if even hinted anything like that that - I was just made to feel like a hypochondriac and if there was absolutely nothing wrong with me what else could it be but something inside my head.21 years is just shocking isn’t it! For something that affects every single cell in your body I can’t understand why checking the thyroid isn’t the very first thing doctors should be investigating - but they need to do it properly check TSH, T4 and T3, narrow down ‘the lab ranges’ AND listen to what their patient is telling them rather than follow their preconceived (and prejudiced?) ideas.

Tsh t3 and t4. Are those the tests for thyroid?

janeroar profile image
janeroar in reply to Lynneat

Yes t4,T3 and TSH -thyroid stimulating hormone - is what is or should be tested

When I came out of ICU in June 2018 I was promised all sorts of things. I saw a psychiatrist in the community once. I was going back, but got a call from him a couple of weeks before my appointment and he just said that he didn't really want to continue to see me, because he didn't really know what to do with me! So he couldn't see what use it was for me to continue to see him, but if I had insisted in seeing him, he would have grudgingly agreed I suppose.

What good was that then? No use at all was it? So I have never bothered again. The one session I did have with him didn't seem to me to be of any use.

This is where all the money goes, treating the symptoms of low thyroid, instead of the hypothyroid itself. I would have been amazed then if they had told me then that it was probably all because of my hypothyroid! My GP's have all ignored it as long as I was still taking the Levo!

And an average of 21 years to be diagnosed! My goodness…

Shocking absolutely shocking. I hope this gets the message out there

Eye-wateringly insulting!! How totally atrocious. Sadly we all battle so much conceit as well as ill health; the conceit that comes with so many in the health business thinking only they know best!!

We read about medical practices and beliefs from the Middle Ages, and shudder... But sometimes I wonder are we that different today!! Just the manner in which women are treated compared to men is enough to question how far we have progressed?? Sometimes I think very little!

Xheila profile image
Xheila in reply to Poppy_the_cat

I went to nursing school (in the US) and the first thing they taught us at school is that we are superior to everyone else. Drilled it in to us most days.

Poppy_the_cat profile image
Poppy_the_cat in reply to Xheila

It's the Mantle of the Order of the White Coat, it confers Godly Status!!! 🤬

I think if I didn’t have a daughter who was a Clinical/Forensic psychologist I would have been labelled, along with health anxiety.

Of course a degree of anxiety is totally normal as we are talking to a brick wall most of the time trying to resolve our problems, of which is mostly manifested by GPs lack of understanding.

So not accepting GPs diagnosis of everything is ok based on ridiculously very little testing and understanding we thyroid sufferers are getting labelled and put on unnecessary meds.

Same thing goes for Premature, Peri and Menopause, when it’s just lack of hormones giving us problems.

Very sad indeed.

Don’t know if you’ve read on my previous posts but I know I’m very cynical but I always think there are three ages of women.

Too young to have anything serious wrong

Middle aged - they must be menopausal

Too old to bother about.

All three ages are considered neurotic - give them antidepressants. Sad really.

Truth is they GPs unless they have opted to take subjects further have very little training on Mental health and Diet and menopause.Not to say some are definitely more aware regardless of training.

So anyone with continuing problems in these areas really should be referred not drawn out, switching from one med to another.

It’s well documented that anxiety, brain fog and depression like problems in menopause is not helped by antidepressants.

But get your decreasing hormones in check and things improve.

Can be a juggling act and take time to get all right to see a difference.

No, I suppose they possibly only have one afternoon’s lecture on many subjects and unless they are interested in that field of have a relative with that problem that’s the limit of their knowledge. They should be aware that it might be their lack of knowledge rather than the patient that is the problem.I’ve been reading ‘Lies my doctor told you’. It is a very illuminating book - it says ‘Come out of the dark and let Ken Berry be your guide to optimal health and harmony and covers areas such as

how doctors are taught to think about nutrition and other preventative health measures, and how they should be thinking

how the Food Pyramid and MyPlate came into existence and why they should change

the facts about fat intake and heart health

the truth about the effects of whole wheat on the human body

the role of dairy in your diet

the truth about salt—friend or foe?

the dangers and benefits of hormone therapy

new information about inflammation and how it should be viewed by doctors

It’s a very interesting read as is Too Many Pills by Dr James Le Fanu.

Absolutely, I’ve read so much on what you are mentioning myself.

My daughters school friend now a consultant went through the med school route, so she’s been able to compare in her area v Medicine route.

We know especially in mental health it’s not an area that’s well studied, and I guess to a point they are actually general practitioners not experts in all fields and they can’t be expected to be… although many think they are and the patient knows nothing, so on going problems don’t get addressed. I feel this movement is hopefully reversing, as people are challenging medicine and educating themselves.

Pharmaceutical companies have too much say in how Drs use medicine now, obviously it’s magnificent at keeping us ticking over, rebuilding us after accidents etc but general day to day medicine, quality of life is poor.

No preventive approach justmedicate the problem, following limited test results and not get to the root cause.

I feel GPs are trapped from using common sense v guidelines and limited testing because of costs involved, which they regimentally have to go through and stick to, which inevitably delays many things, wastes money, and many often only treat the symptom.

If you’re on meds and within guidelines results wise it’s dismissed as the problem.

Eventually when exhausted everything it’s one of those things.

There’s a certain amount of our own responsibility to look after ourselves to prevent the onset of problems, through diet exercise and wellbeing, but not all are capable be it mental health, learning disabilities and poverty… it’s a very difficult area to pinpoint where some problems start.

Knowledge…education is key, get youngsters cooking learning about nutrition in school more, med school and regulate food industries to stop piling out endless junk, make the unhealthier food more expensive and more nutritional food cheaper and help farmers be able to provide this, there is room for both I’m sure, who knows the answer. 🤷🏻‍♀️

I think you’ve hit the nail on the head - our GPs are general practitioners and not experts on everything but I feel they should perhaps be a bit more willing to listen to their patients symptoms.

I have just self diagnosed my own sacral insufficiency fracture with the help of Dr Google though. My symptoms were SO obvious yet were overlooked by pretty much everyone I spoke to apart from a hospital based GP who thought from my description that I had sacroiliitis which was a very good guess and he also realised I was in agony.

Fortunately I finally found myself really good physio who listened to me and sent me for private MRI scans - I needed three in the end. I really do feel that if my GP had shown the least glimmer of interest she could have sussed that out herself.

I’m beginning to think medical schools and a lot of the knowledge imparted there is heavily influenced by big drug companies - everything seems to be down to what your blood tests say. I actually wonder if it is even worth the patient being present - just let the doctors and consultants see your test results.

I think it must be very difficult for any doctor trying to buck the trend especially for any recently qualified, keen young doctor. You read on HU about people who occasionally get a keen young doctor who seems to really care but who eventually either moves on or gets ‘reined’ in by other practise members.

I couldn’t agree more with your final paragraph - as we know from the various HU sites people really do need to take responsibility for and far more interest in their health - nutrition and exercise and generally how their bodies work - I also think it is a pity that food and nutrition, as well as budgeting and cookery are no longer on the school curriculum or they weren’t when my sons were at secondary school, they may well be now, and even when these things were anything they made tended to be things that would fit into a short time scale because of the time tabling so anything they made tended to be food that could be cooked quickly - cakes and biscuits mainly and budget planning and nutrition was replaced with designing a container with which they could ‘market’ their ‘product’.

We really are living in strange times.

I was diagnosed by private physiotherapist at Nuffield as having a little too much movement in my hips and SIJ, sacroiliac joint and the muscles in surrounding areas needed to strengthen, so was getting Sacroiliitis so this was 6 yrs of trying to strengthen the muscles etc but not getting muscles to engage or strengthen … so I looked into musculoskeletal problems with thyroid, and tried to lose weight as know that would be GPs view and get myself generally fitter, 2 and half stone lighter didn’t make one iota of a difference and I continued to get even more bouts of spasms all which I’ve always thought was mechanical as it were, eg posture related, but then saw a paper on Hoffman’s syndrome.Which is exactly what I’m experiencing.

ncbi.nlm.nih.gov/pmc/articl...

My Tsh has never been under 2 and there’s more that can be done just increasing levothyroxine … along with possibility of T3 conversion problem.

Endocrinologist hasn’t ruled out using T3 if can’t get my levels lower.

I’m investigating all this at the moment and it’s a long process.

Trying to rule out myositis too.

However since this process I’ve had scan for suspicious ovarian cyst (Ca135 normal) and a condition called adenomyosis, so there is another possibility that this could be causing my hip, sij and lumbar back pain (spasms).

I’ve had 2 full spinal mris including pelvis and sij and nothing an orthopaedic consultant can do for me as nothing wrong mechanically to show as it were.

Seems always something determined to get to the bottom of it all.

I was diagnosed by private physiotherapist at Nuffield as having a little too much movement in my hips and SIJ, sacroiliac joint and the muscles in surrounding areas needed to strengthen, so was getting Sacroiliitis

This is really interesting; I've been getting SIJ pain for 6years. Osteopath said it was due to prolactin and everything loosening during my pregnancies. I've not been strict with exercises but it doesn't seem to help much. I'm just really interested to hear someone else say it; I've never been able to find anyone who knows what the SIJ is, let alone get spasms in/near it! 🤣

Oh it’s such a pain and had similar explained to me re some just don’t go back after pregnancies, the lady physiotherapist her area was complications afterbirth …but my daughters 27😂It’s not supposed to move much fee mm mine she thinks is cm which is more than triple range.

How she knows this 🤷🏻‍♀️

I’ve always been flexible but I never consider myself as hyper flexible… which I know can cause problems too.

I have now tried to pinpoint it down to complications with thyroid, as I’m on very low side of T3 and TSH is too high so until I get these areas sorted to help in general, I’m on a losing battle I think re strengthening muscles.

I was using weights Swiss ball resistance bands and dozen of exercises, I still do some, but Swiss ball at moment is still out of bounds as I’m not quite ready or strong enough anything uneven or even sitting on something too soft pulls me out of position.

I do have sacroiliac belt but find that hurts 🙄

I take Hrt as now 55 and still perimenopausal and it’s helped somewhat joint wise as they were getting stiff, but not helpful re muscles.

Physiotherapist can’t understand why I shouldn’t be much stronger, I religiously did exercise then it would go and be out and fairy steps again, very tiring and frustrating as start to get better then hit a brick wall back to beginning.

Not getting anywhere with it all I looked up hypothyroidism myopathy and also conversion issues and now seeing an endocrinologist regarding this he doesn’t think it’s thyroid 🙄 so he started with dozen or more immunology ones to see if I have onset of myositis which did come back as a weak positive but might be nothing and retest in 6 months.

But he said he can do more for thyroid too so in that process at moment.

For this to come out the blue and cones and goes it’s either mechanical I thought or is it perimenopausal as hormones are like a roller coaster but they can’t see anything of any significance on mris and on hrt and hasn’t sorted it, so as I have autoimmune coeliac & possibly Hashimoto’s it was to eliminate more autoimmune conditions eg lupus and others, all tests clear bar 1 as mentioned.

Coeliac disease can cause ataxia I was asymptomatic for both Coeliac & hypothyroidism, they were found by chance and was off the scale with nutritional deficiencies.

I was ok until a year in taking Levothyroxine which I have explained to Drs.

My muscular spasms have got worse every year which lead me to hrt as fits timescale.

Nothing gets rid of the pain they have to go by themselves and where it was couple of weeks, it was more than 6 months last year, I’m still not driving in fact got rid of my car as getting in and out hurts so much.

If I don’t push myself I can get by if I have frequent stops in doing chores, I suffer next day but so far stopped it going into spasms … but I don’t do a lot I just try to not sit for long though.

I’ll get to bottom of it (pardon the pun) I’m not a quitter!

How interesting, I also suffer with sij pain and I even had surgery with a fusion last year but unfortunately little or no relief from the pain. Like many I've tried all exercises and analgesia going except gabapentin which I continue to refuse. I've recently started taking T3, private consultant and felt generally better initially but not so good these last few days. I have 2nd appointment with him next week, on zoom which I don't like but hopefully will help. I hope you feel better soon x

I must have been one of the lucky ones - I was diagnosed with Gravers disease within a month.

helvella profile image
helvellaAdministrator in reply to Digger0

With Graves' people are often mildly hyperthyroid for years before they change from the mild symptoms which might even be positive, to too much and the seek help.

If they are clearly hyperthyroid when they go to the doctor, it does seem that the possibility of hyperthyroidism is more clear to doctors, hence diagnosis should be fairly straightforward.

Though two things mess that simple picture up:

First, that they might have been hyperthyroid for many years;

Second, the number of time the flares of Hashimoto's are misdiagnosed as Graves'.

Also, the rarity of actually doing the Thyroid Stimulating Immunoglobulin test to establish beyond reasonable doubt the cause of the hyperthyroidism.

But very glad you were diagnosed quickly.

Digger0 profile image
Digger0 in reply to helvella

I had had numerous blood tests including thyroid ones for several years because of other problems. My GP did all test again when I went with severe weight loss and one of my results was Thyroid peroxidase antibody level > 1300 iu/mL (0 - 60 iu/mL)

When I was finally diagnosed, apart from everything else, I had lost so much weight that the receptionist who brought in the doctor’s morning coffee commented on how much weight I’d lost - but that was only three months after a different doctor I saw had looked at me like I was some sort of specimen on a slide, leaned back on her chair and told me I was ‘needing my holiday’. 🤣

One of my GPs tested my thyroid many years ago - we both thought I was hypo and I remember her saying that the test result was surprising because I was actually borderline overactive. That was back in the days when I trusted what a doctor said and settled for ‘your results are fine’ without ever questioning things. I’m wondering now though if I was ever tested for antibodies of any sort.

The funny thing was that I was always sure I had some sort of autoimmune condition - I just never thought about being overactive because I had Graves.

You live and learn don’t you - especially if your thyroid is up the creek.

I think this was so in my case helvella. Eventually I went to complete and virulent Graves (as was said at the time), and after a few years and a son with special needs when I wasn't being treated properly (or at all really) I eventually had to have a sub-total thyroidectomy (9/10ths removed) while 14 weeks pregnant with my daughter. I was then not treated for the ensuing hypothyroidism for 19 years. I wonder if, in this time, they were waiting for my TSH to reach 10 or even 20? I do know that within this time and with two babies and another young son, I felt as though I was on another planet. I lost my children's young life and bitterly regret this. This post should be important reading for all Doctors in NHS. Thank you for posting this helvella.

Indeed. A 'Practice' Manager told me, "Doctors aren't paid to read"... when I began to put correspondence in on my being ignored.

They obviously didn't read much in Med School either!

It would be churlish to ask, since their writing is so poor, whether they can!? 😅

Only a mild-laugh is recalling uni 'Debates' in the 'Men's Bar' with medics and agrics being seriously laughed at! Cruel... hell no, given what has been/is done to so many of us. 🦕

Digger0 profile image
Digger0 in reply to LindaC

When I saw my cardiologist last week, he drew the heart etc on a note page. This was on the bottom of the page!

Lined paper with "always ensure that your writing is legible" in capitals at the bottom.
helvella profile image
helvellaAdministrator in reply to Digger0

Lovely!

Especially when you consider that lower-case or sentence-case is widely recognised as being more legible than that bottom of page comment. :-)

Always ensure that your writing is legible.

versus:

ALWAYS ENSURE YOUR WRITING IS LEGIBLE

LindaC profile image
LindaC in reply to Digger0

Reminder to self or under 'guidance' ;-) Thanks, that's good to see.

These stats are horrendous and CANNOT continue.In just the same way that Menopausal symptoms are often initially mistaken for depression, we hypothyroid sufferers need a medical champion like Louise Newson who is doing just that for menopausal women, to take on this cause for us.

Who could that possibly be? We need to start making a noise about this!

I spent a year telling my GP I felt dreadful: exhausted, weight gain, severe joint pain, itchy scalp and skin, sensation of lump in throat and difficulty swallowing. She treated me very poorly, and it was clear she thought it was all in my head. Two days ago my husband spoke to his GP telling him he’d been feeling a bit under the weather lately with very low energy levels and was immediately set up with a face to face appointment and a raft of blood tests. To put the icing on the cake I was asked to monitor his activity and check his blood pressure four times a day! My blood pressure went through the roof!I wonder how many of the 32% were women and therefore ‘menopausal, hysterical, or hypochondriacs’ according to their doctor?

Thank you for circulating this information. It seems to me that much effort is put into helping people who are pre-diabetic or diabetic - and of course it is necessary BUT why is so little importance put onto the 'Thyroid problem' ? - If people have mental health issues in relation to thyroid problems its because they are not listened to, or assumptions are made without proper enquiry or open thinking on the doctors' part.Its joining Thyroid UK that has helped me so much; realising that I'm not alone, not imagining the changes in my outlook and that I really didn't need tranquilisers.

Thank you Thyroid UK

i agree. What damaged my mental health was seeing that the physical effects i was reporting weren't believed, and this subsequently damaged my already shaky belief in myself , and this led to my need for counselling.

And thanks to everyone here for showing me that others experience the same problems with thyroid disease , and by providing access to proper information ... this forum has done wonders in repairing my mental health.

I have had LOTS of very good (and presumably very expensive) counselling provided via the NHS .. which i do appreciate , but they could have saved a fortune it they just sent me to ThyroidUK in 2005

I always say there is a huge difference between ‘being depressed’ and finding something (usually your doctor not believing what you are telling him / her) depressing. Not the same thing at all.

Fundamentally I agree. However, when a person is in the full flow of working or trying to build a career (in later life) the sadness or finding GP's disbelief depressing, then ends up undermining your belief in your abilities or yourself - - which can lead to depression. Also a fear of going back to the Doctor - last autumn my very nice GP said sympathetically, that we may never know what triggers my palpitations - hah then I read about mannitol on this forum - long story short - I haven't had a palpitation so far this year. I am due for a pacemaker check in a couple of weeks so am very interested to hear what they can see. So, in reply to tattybogle - yes I wonder whether I actually needed a pacemaker - that would've saved the NHS £6,000 I believe. Talk about finanical management. :-) Take care, stay well and believe.

Never mind saving the NHS money - the thought that you may have ended up having a pacemaker fitted that you don’t need just doesn’t bear thinking about does it. Good luck with the pacemaker check.

Thanks. I did have the pacemaker check. Would you believe that I had a massive spike in my heart rate the evening before and had to take my 'pill in the pocket' I was fine the following morning but they could read what had happened.

They went on to tell me that the slight fluttering under my sternum that I'd had for the past 3 months or so was indeed AFs caused by slow heart beats - hence pacemaker doing its job (more in the upper chambers apparently???) The fast heart beats are treated with beta blockers (which over the years of various doses still made me ill - during the episodes of slow beats) so as I don't get these episodes constantly, normally I've been prescribed Flecanide as a 'pill in the pocket'.

Of course, last autumn I had these 'palpitation episodes' everyday and constantly - very frightening - 2 reasons I think - long covid exacerbates any underlying condition and I can't tolerate mannitol.

It is true that the last episode was Christmas day 2020, 2nd Jan 2021 then 8th November 2021! So it appears that I do need a pacemaker - and I still don't know what may have brought on the spike in heart rate. I must get a new monitor that goes on your finger - can't think of name - mine broke.

I need to pluck up courage to ask my GP to investigate my T3 - T4 situation - that's another story - just feels that I'm chasing my tail all the time - I think they hope we'll just give up. :-) Take care and good luck

NHS are very good at contracting out work, perhaps they could contract out thyroid care to Thyroid UK!

You do have to wonder if it wouldn't be easier to just forget about trying to prove TSH is useless / T3 is safe and effective / some people do better on NDT / etc , etc.. and just present a spreadsheet to the Treasury showing how much money and time we could save the NHS by doing it properly, testing the right things, and letting someone with half a brain source some T3 for a reasonable price ...

ATVMWF profile image
ATVMWF in reply to tattybogle

Well said Tattybogle!!

Once treated properly and FT3 in a good place, our brains work so much better and no longer only half there!

Which then has an affect on our physical wellbeing. :-)

Context - in reply to you and part of my reply to fruitandnutcase - - So, in reply to tattybogle - yes I wonder whether I actually needed a pacemaker - that would've saved the NHS £6,000 I believe. Talk about finanical management. :-) Take care, stay well and believe.

The Call of the Misogynist, [women doctors aren't any better, needing to 'toe the line' with the males] - easiest way of getting rid of patients [whining about things we know little about and don't care to even discover] - which is why I call thyroid hormones - just that, HORMONES, not 'Meds'... as in Hormone Replacement Therapy, which I'd never have taken. How about Thyroid Replacement but, err leave the Therapy bit out!? 😅

Endeavour not to become invisible :-)

Apologies helvella - thank you for posting this and so many other really helpful posts. I've never in connection with my thyroid [did when younger and had no clue... sadly, it seems that it's the doctors who have 'mental issues' when they fail to accept their lack of knowledge and sad, fragile egos] had it suggested I take any of their 'cocktails of abuse' but their labels, it would seem, still prevail across the board. 🦕🐍🤷‍♀️

That post has touched me helvella to the point I’m about welling up.This male isn’t ashamed to say he might have crispy cuffs later with wiping tears away! Just wish my doctors and the so called mental health team I was referred to could read it…….

They eventually might understand why I went cold turkey with the anti-depressants and upped my own levo…….

It’s an overwhelming and lovely feeling not being scared and wanting to run away from the company of your own family anymore!…….

I feel very lucky and grateful I found this site!

Saddened but not shocked given my own personal experience.😪 and from what I have read on this forum, many other thyroid sufferers journeys.Well done to Thyroid U.K. for highlighting this issue and to Helvella for the post.

We can only hope that some doctors take notice and instead of routinely dishing out the antidepressants, actually pause, use their eyes for once and 'think thyroid'.

It doesn’t surprise me in the slightest, no matter how shocking it is. They blame nearly everything on MH problems these day. They don’t listen to the patient and have already made their mind up not long after opening your mouth so anything you say after this might as well be blah blah blah.

The medical profession needs a good kick up it’s ass, the way they behave means they are not fit for purpose. Does it start at training, rules & regs they have to follow, not enough time with patient or some other agenda. I don’t know the answer to that, only that I don’t trust them, and that’s on them not me.

What I find most shocking is that this is still continueing. Back in 1992 I started my thyroid journey. For three years a very unsympathetic lady gp insisted on treating me for a premature menopaus - I was just forty!! She refused the blood test that would have confirmed I was not even pre menopausal. There was no family history - infact my antecedants all had late menopauses!! Twelve different HRTs tablets and two patches left me feeling really at death's door. I refused the offered thirteenth HRT variety. Then told I was mentally ill and needed uppers. I refused and was given six weeks to think about accepting treatment. Then I was told if I did not accept the treatment she said I needed she would have no choice but to remove me from the surgery! This was the first sensible thing she had ever said to me. I changed surgeries, found a very helpful male doctor. It was confirmed I was not even pre menopausal. A few months later a helpful gynecologist diagnosed hypo. I thought at the time that I was just unlucky. Now I know this is the usual treatment for thyroid sufferers. It's absolutely shocking that thyroid problems are still not recognised and treated. But what's more shocking is that the menopaus is often blamed for women's problems. When problems don't respond the only answer is that "it must be in the mind". When will doctors learn the truth?

So sorry for this misdirection in health. If this is the guideline, then assure the medical and mental health caregivers are in tandem and share contacts. Referrals are so important to work together with brain/body unification, not as a pacifier because of lack or coordination in human care. Take good care of yourself. Thanks for sharing.

😫😫Well done thyroid uk on trying their best to educate as many people as possible 🙏

Hi . I have read many of the comments on here and the Journey many people have been on and are still on to find the key to getting treated correctly so they can improve and get back the lives they once enjoyed. The problem lies not only with the medical profession but the people that sit around the table at the NHS responsible for funding the drugs we are prescribed by our GP,s and Endo's. Levothyroxine is dirt cheap to prescribe and as a synthetic drug it is widely used as a "one cap fits all" to try to fix a very complex illness. A few manage to get the treatment they need,but many are left to suffer dibilitating side effects that with proper medical training could be eleviated. In March of this year because of the symptoms I described to my GP of utter fatigue, vertigo, nausea I was sent to a rapid diagnostic clinic. I was warned the tests to be carried out amongst other things would be for Myloma. I then had to wait anxiously for results for 7 days before I was discharged back to GP. Thank goodness the tests were negative. I had been on treatment of Levo for nearly a year but was undermedicated. The problem I had as may people on this website have is convincing the GP!! Surely we as a collective body on this wonderful forum could try to take our fight for a decent overhaul of the system if we make enough noise. If you want my support for anything Youve got it,

I'm currently sectioned in mental health unit!Had COVID 13.10.2021 & all hell has broken loose 😢 Hypothyroid & latex allergy both affected by Covid!!

Think I'm MYXOEDEMA CRISIS my legs & feet are very swollen with fluid/mucositis I have shown mental health staff who shrug & no one seems bothered that this may be a medical emergency?? Three times tonight I have been thwarted by ward nurse in charge cancelling the ambulance 😢 my husband is at home & virtually put phone down on me. I have been manic hence admission here - is it MYXOEDEMA or COVID Psychosis. Lost my 34 year nursing career to this disease now looks like Marriage is doomed . Also now Hypertensive, kidneys eGFR 51 &ACR raised, fatty liver cholesterol

You may also like...