Mental health patients needlessly dying... - Thyroid UK

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Mental health patients needlessly dying...

PinkNinja profile image
14 Replies

I don't know if any of you saw this on the news today. 'Shocking' but 'unsurprising' are the two words that most easily sprung to my mind on hearing this news.

bbc.co.uk/news/health-24240408

I remember the doctor that diagnosed me with hypothyroidism after so many before him had treated me like a 'mental health patient' (which is what I was). He treated me like a 'normal person', which is why I asked him to check my thyroid. I told him I had been refused several times because I had one a few years ago which was 'normal'. He said it was a perfectly reasonably request and couldn't understand why I had been refused (fairly sure it's because I was a 'nut job'). He tested not only TSH but T4 AND T3. On the strength of these results he told me I was most definitely hypothyroid - no ambiguity at all - and decided I needed T3.

He was the first GP I saw since being 'somewhat loopy' that treated me like a normal person and didn't dismiss me because of my loopiness (apparently having a mental illness means you are also unequivocally a hypochondriac). I have had a couple of good ones since then but also some horrible, arrogant ones.

I have to say, I was shocked by this news and very pleased that it has come to light in the media at last. It is by no means a new thing!

Carolyn x

Edit: The tags on this thing are completely bonkers! I have removed the most useless ones but left 'mental' as it describes the GPs' views of me very well ;)

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14 Replies
helvella profile image
helvellaAdministrator

Sounds of gnashing teeth...

"... some anti-psychotic medication led to patients putting on a stone in weight, but this was often not monitored. "

... and any possible connection with thyroid hormone levels was totally ignored. Except somehow "ignoring" sounds like they know enough to decide to ignore - not that they don't even think about it.

And what are the associations between smoking, thyroid and mental well-being/ill-health? I know I don't know but would be surprised if there were not strong links.

Rod

PinkNinja profile image
PinkNinja in reply tohelvella

I agree with everything you just said.

I gained more than a stone on the anti-psychotic medication. If only they had just treated my borderline hypothyroidism and I would never have needed it in the first place...

I never once had my weight monitored for the sake of monitoring my weight. When I was sectioned for a year (I still find it hard to believe that my thyroid is at least partially responsible for this!) I was weighed and measured when I went in and then again before my first session of ECT (probably for calculating the anaesthetic) - that was it.

Hard to believe I'm even slightly sane now, isn't it :D

nicolajane profile image
nicolajane

This doesn't surprise me at all as I've experienced it first-hand and have heard several similar stories. If you have been diagnosed with a mental illness it seems that doctors use this to explain away any manor of symptoms which I feel is negligent not to mention dangerous. In my case it meant my hypothyroidism was left undiagnosed for years and years to the point where I was very ill and pretty much bedridden. 4 years on and I have still not received optimal treatment. Every time I go to my Gp it feels like I am under pressure to accept that any symptoms I have are nothing to do with my thyroid but due to anxiety and/or depression and hence I should go back on antidepressants (which never helped in the first place!). A recent example of this is I have been to my Gp as I've been having chest pains and a feeling of my heart pounding (which I know is symptomatic of my thyroid treatment not being right) - I was handed an information leaflet on panic disorder! A friend of mine who has a previous mental health diagnosis recently went to her Gp as she is finding it impossible to concentrate and has gained a lot of weight (ring any bells?) - her gp prescribed Ritalin (the ADHD drug)!! Fortunately she had the sense not to take it.......

Janinit profile image
Janinit in reply tonicolajane

If I were you I would get a new doctor as this one is crap......I have been down this road and it is hell.. sending love and best wishes xxx

Clutter profile image
Clutter

I'm bipolar since my teens and had thorough exam & bloods to eliminate physical illness. It should be mandatory for GPs to do a full panel TFT, ferritin, folate, VitD & B12 before prescribing ADs & anti-psychotics. There are some harrowing tales of people (women) having psychotic episodes & being sectioned on Hypothyroidmom's blog "When hypothyroidism masquerades as mental illness".

Funnily enough I didn't get my thyroid checked for over a year because I put my worsening symptoms down to bipolar depression. Only saw GP when a lump appeared in my neck. When I requested a referral for depression GP said wait, it's probably your thyroid :)

PinkNinja profile image
PinkNinja in reply toClutter

I agree! I had to wait years for a diagnosis of hypothyroidism. I am now attempting the get my diagnosis of 'schizoaffective disorder' rescinded, if that's the right word in such cases. Although I had all the symptoms, since getting better thyroid treatment I am now realising I do not have this at all. I was sectioned too - two back-to-back section 3s. I really need this removed from my records. Perhaps then I will get doctors to take me seriously ;)

tegz profile image
tegz in reply toPinkNinja

I have a good brain, but after 2 months on Levo I was struggling to remember every other name I needed.

Easy to see the potential mental debilitation of years of neglect in matters thyroid.

Clutter profile image
Clutter in reply toPinkNinja

So, a misdiagnosis leads to dangerous & inappropriate drug treatment, incarceration & potential future misdiagnosis & inability or delay in providing appropriate treatment because of the original misdiagnosis :(

I can see the necessity of getting that diagnosis removed from your records.

Doctors seem to find it incredible that mental illness, alcoholism & smoking doesn't prevent people from suffering other illness that the rest of the population experience.

Wellesley94 profile image
Wellesley94 in reply toPinkNinja

Your message has prompted me to think of my niece: she had her thyroid removed In her late teens. Cancer I believe. She now has a diagnosis of bipolar disorder. I wonder if there is a link. I'm not sure she has been cared for very well or what thyroid meds she is on? She has been sectioned twice and is on anti psychotic med. has gained an enormous amount of weight too. It might be worth me looking into. What do u think?

PinkNinja profile image
PinkNinja in reply toWellesley94

Definitely! It sounds like she may not be on the correct dose of thyroid medication. It is also worth looking into vitamin B12 deficiency as this is remarkably common in hypothyroidism and carries many of the same symptoms as various mental illnesses. Vitamin D deficiency is another that is worth looking into.

I hope you find the cause. I does seem a bit of a coincidence that this has happened since her thyroid was removed so I do thing these things are definitely worth looking into.

Please don't accept "normal" as an answer to any blood tests. Post them on the forum in a new post and someone will be able to advise. Unfortunately the normal ranges on thyroid and B12 blood tests are very wide and we each have a very narrow range at which we are healthy. If any of the results are anywhere near the top or bottom ends of the ranges, there may be a cause for further investigation.

All the best to your daughter.

Carolyn x

Lenny profile image
Lenny

I have an underactive thyroid & pernicious anaemia. Before being diagnosed with either I was back and forward to the doctors with fogs, tiredness, muscle & bone pains etc. Now I am on treatment (doubtfully optimal) and still suffer from the fogs, tiredness (not so extreme), pains etc. & have been put on anti depressants as the doctor thinks the pains are in my head! Aye right.....is it any wonder we get depressed with this ridiculous treatment grrrrrrr.

cloud1 profile image
cloud1

I wont go on about ,but a few years ago i went to a psychiatrist to be assesed for depression(to get counselling)and she made an 'informal diagnosis' of delusional disorder based on the fact that i insisted that i have physical symptoms of thyroid disease(and do have high anti bodies)even though my tsh was within normal range!needless to say i was fuming when i found out that bitches 'diagnosis';just incredible ignorance!!

White_Mist profile image
White_Mist

As a new member of this forum, I am truly amazed just how many people are having thyroid problems – its almost like an epidemic, don’t you think? I had a echography then a scintigraphy in 2012 which concluded that I had an enlarged thyroid with one large nodule and several smaller ones, so was advised to be monitored each year. I asked the Doctor who did the scan, when did these things start to grow – his reply amazed me. Bearing in mind that he had no other prior knowledge of my medical history he said that it was probable that I had always had thyroid problems which most likely started at pubity!! I had a total thyroidectomy in July. .

Having had lots of different and seemingly unrelated problems over the years, everything seemed to drop into place. It was like an Ah-ha moment and lots of things begin to make sense. My list of problems has been lifelong and too depressing to go into, suffice to say they have ranged from mild to serious. In the past I have had one or two thyroid tests but as the results were within the normal range so nothing was taken any further and the symptoms carried on. Does something happen to trigger thyroid problems at pubity, if so what happens and do doctors know about it?

I have come to think over the years that psychiatrists ought to carry out a thorough screening test for all manner of things including vitamins, minerals, thyroid function and a whole body CT scan (plus anything else that anybody in the fourm might think necessary), then having both the psychiatrist and an endocrinologist analyse all the findings, looking to see if there is an underlying problem and come up with a combined solution then closely monitor the treatment given with a dedicated support team - in an ideal world of course. I feel sure that the costs would be justified as there would be less repeat referrals.

It seems to me that Thyroid problems are on the increase so much so, that research should be funded to explain why.

Hiphypo profile image
Hiphypo

It makes me weep with frustration.

I too wonder at my prior diagnoses - Fibro, Bipolar, CFS. I also know of a friend's wife who was taken regularly to A&E and sent away - she was manic and delusional. It was a Dr S who saved her life, not NHS.

And every time I go to a Bipolar support group meeting and see the rows of overweight and exhausted people, I want to shout, "Go and get your Thyroids checked".

This is one reason I will be going along to support on Tuesday when the Scottish Thyroid Petition gets an airing in Parliament. Though having seen the line up, not hopeful.

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