Psychiatric Somatisation disorder suggested bef... - Thyroid UK

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Psychiatric Somatisation disorder suggested before thyroid dysfunction diagnosis?

Agitator23 profile image
30 Replies

Just out of interest, how many people have been fobbed off with a suggestion or diagnosis of a psychiatric/psychological disorder whilst trying to get a diagnosis of thyroid dysfunction?

I think it must be quite common. When it happened to me I was shocked. (Can you believe it?!) At the time I found it distressing and very, very disappointing. The medic was condescending and plain wrong. I fought it and it was dismissed but how lazy and misguided!

The thing is it stays on your record. You can't remove documents from your records but you can add. I had a document inserted to show it as an 'unsafe diagnosis'. This is a while back now and, despite the insert, I think this suggestion of psychosomatic has had an influence on doctors looking at my medical record since then. Yet another obstacle to diagnosis 🙄

Did something like this happen to anyone else?

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Agitator23 profile image
Agitator23
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30 Replies
DippyDame profile image
DippyDame

Wrong/poor diagnoses and medication protocols are quite common as you will find if you read through current and historic posts here.

The brain needs a lot of the active thyroid hormone T3 to function effectively so I suggest you start with a full thyroid test to include....TSH, FT4, FT3, vit D, vit B12, folate and ferritin.

This medic probably only knows about TSH, and not much at that and is basing his decision on that and trying to cover his ignorance by being condescending.

thyroidpatients.ca/2021/07/...

Perhaps it might help if you re-read your earlier posts...they contain a lot of helpful advice.

Many of us test privately...

thyroiduk.org/testing/priva...

In your shoes I would complain to the Practice Manager on the grounds of poor doctor/ patient communication and ask to see another doctor in the Practice who may show more empathy.

Before an appointment make a list of all you wish to ask along with your reasons for asking...as an aide memoir. It's easy to become forgetful during an appointment and this helps.....it certainly stopped me, way back, squawking like a demented parrot!!!

Thyroid hormones are the problem so they, crucially combined with all symptoms, need to be investigated.

TSH is a pituitary, not a thyroid hormone!

thyroiduk.org/signs-and-sym...

You haven't posted any recent results so it's difficult to establish your thyroid function status ...and we cannot guess a reliable diagnosis.

So, yes, I'm sure this has happened to a lot of patients. We need to learn and advocate for ourselves.

Try again with a different medic....ask to trial Levothyroxine, don't request or even demand it.

A trial lets them feel they are still in control....egos need to be massaged!!

Good luck!!

J972 profile image
J972 in reply toDippyDame

Yes, happened to me. I was offered CBT to come to terms with my “lack of diagnosis”. I’ve avoided GPs ever since.

DippyDame profile image
DippyDame in reply toJ972

Expensive "talking therapy" was suggested to me years ago by a GP.

It beggars belief!

RedApple profile image
RedAppleAdministrator

I could write a book on this subject, in connection with myself and other family members. I think there are very many members here who can empathize with you.

DippyDame profile image
DippyDame in reply toRedApple

Me too....

PRJ20 profile image
PRJ20 in reply toRedApple

Me three... (except mine's just in relation to me, having seemingly drawn the short-straw in relation to genetics!!)

SlowDragon profile image
SlowDragonAdministrator

Yes …been there …..got the T shirt

GP was at a loss as I didn’t recover on (totally inadequate) 75mcg dose Levo

I was repeatedly refused referral to a specific thyroid specialist of my choice

Instead had to do 6 x 1 hour sessions with psychologist, who wrote to GP at end of the course recommending I get immediate referral to endocrinologist as I was clearly physically very unwell

Sparklingsunshine profile image
Sparklingsunshine

Yes its happened to an awful lot of members, I think there are a number of reasons, pressure on doctors, we normally only get 10 minutes if that to get across how we feel, its pitifully short and a lot of patients dont feel satisfied unless they get a prescription out of a consultation. Plus poor continuity of care is another big problem, how often do we see the same GP or doctor twice?

Doctors actually get extra funding for prescribing anti depressants, which is crazy, but sadly true. Its more lucrative for them to diagnose you as anxious, depressed than to take the time and trouble to run tests. Diabetes, high blood pressure and high cholesterol are also nice little earners. Thyroid disease however, isn't. It gets virtually no funding.

Plus the NHS are notoriously reluctant to diagnose thyroid issues. The ongoing costs of regular blood tests and the fact that we can get a medical exemption on prescription costs may explain some of it. And many GP's are simply ignorant about the thyroid and its function. They spend very little time on it in med school.

There is also a lot of gender bias and misogyny in the medical profession. We haven't moved on much from when women were dismissed as hysterical or put in asylums. Women's pain is routinely dismissed, women's health outcomes are often worse in cases of heart attack or disease, women are more likely to die of a cardiac arrest than a man as doctors still dont take symptoms like chest pain seriously.

Due to our complex hormonal system we get fobbed off with doctors blaming everything on PMS, pregnancy, menopause. And we are seen as more susceptible to mental health issues due to fluctuating hormone levels.

And then of course there are just lazy, useless doctors who couldn't give a toss, who are just time serving until they can retire. And telling you you're depressed means a far easier time for them than actually having to do some work, run tests, come up with a diagnosis and heaven forbid, actually treat you. Its the path of least resistance.

Unfortunately a lot of thyroid symptoms are quite vague and common to many other conditions, including depression. But any decent GP should be testing bloods to rule out anemia, thyroid or low B12.

PRJ20 profile image
PRJ20 in reply toSparklingsunshine

☝️ This...

Spot on SS 👏 Every word...👌

inthedoldrums profile image
inthedoldrums

It happened to me too when my GP put it in my referral to a private endo. I only found out because the endo sent me a copy of the referral. I was devastated and could see that the endo was trying to evaluate that part whilst he was doing the consultation. I now feel slightly self conscious and uneasy when I speak to a GP as I know they must be wondering about my so called 'personality disorder'. When I was labelled with that, I was suffering very badly with ME/CFS as a result of being told by my GP to come off of Levothyroxine all at once since it was making me so unwell. At the time I did not realise that the ME/CFS was almost definitely a result of that and so I was pushing to go down every avenue privately and on the NHS to find a solution. I think the diagnosis of a personality disorder is their last line of defense and I despise any GP who who stoops so low when a patient is already in dire circumstances healthwise. I do not believe I have a personality disorder. I did well at school, although a bit of a rebel and held down decent jobs, spending some years in the civil service. I am happily married and contributed to the household financially and brought up a son who is stable and intelligent. I never got around to having a note put on my medical notes to refute this slur. I used to really like the GP who did this to me and so it was doubly devastating. I now realise now that her nice way of talking was just a cover for a penny pinching, profit oriented, self protecting practice, 'the sword in the silk glove' in other words. One salient point, I suppose, is that surely a GP is not qualified to make such a diagnosis. Should that not be down to a psychiatrist?

All best wishes to you.

Agitator23 profile image
Agitator23 in reply tointhedoldrums

My friend, who's a senior psychiatric nurse, said just that - only a psychiatrist should make that diagnosis. And then only after assessing you over several consultations. That's why I fought back when somatisation was suggested in my case...

Sparklingsunshine profile image
Sparklingsunshine in reply toAgitator23

I nearly got fobbed off with it by a neurologist, I had very sudden balance issues that went on in total for 2 years. He went with a vestibular migraine diagnosis but mentioned functional neurological disorder, FND, the new kid on the block. I think its what they call somatoform disorders now. Or frankly no idea as I call it.

As there was no immediately obvious explanation for my balance problem he suggested it was anxiety. Its such a cop out. They dont know what's wrong or care and just want to get you out of the door. Victim blaming makes me really angry.

So they give you a fancy name which just means all in your head and expect you to get on with it. I'm reminded of the many diseases that flummoxed doctors in the past, epilepsy being an obvious one.

For centuries epileptics were believed to be possessed by evil spirits and were feared and shunned, similarly those with leprosy. However doctors can now diagnose and treat both conditions. I hope in time that medically unexplained conditions will be found to have a biological, not psychological, cause. And that they will be treated accordingly.

Agitator23 profile image
Agitator23 in reply toSparklingsunshine

I'm reminded of the many diseases that flummoxed doctors in the past, epilepsy being an obvious one.

And don't forget, more recently, the 'Malingerer's Disease' that turned out to be MS...

humanbean profile image
humanbean in reply toSparklingsunshine

I think its what they call somatoform disorders now.

I think the latest version of this is called "somatic symptom disorder"

en.wikipedia.org/wiki/Somat...

They have previously used the words somatoform or somatisation in the same context. I don't know what the difference is between all of them. They seem to be just dustbin diagnoses designed to remove the need to investigate and/or treat, and to get the patient out the door, with the doctor hoping they never come back.

There are other names for these dustbin diagnoses. Please note I am not trying to dismiss people who have been diagnosed with any of these. I've been diagnosed with several of them myself. But I knew that once I got one of these diagnoses I wasn't going to be taken seriously when discussing the problems I had from then on.

Medically Unexplained Symptoms (MUS)

Medically Unexplained Persistent (or Physical) Symptoms (MUPS)

Non-Cardiac Chest Pain

Fibromyalgia

ME

Central Sensitization Syndrome

Some doctors consider subclinical hypothyroidism to be a dustbin diagnoses

Functional Neurological Disorder

Functional Gastrointestinal Disorder

Irritable Bowel Syndrome

Multiple Sclerosis used to be considered a diagnosis mostly suffered by hysterical women

Patient are sometimes referred to as a catastrophizer

Severe indigestion leading to gastric ulcers used to be considered a diagnosis mostly suffered by hysterical men

Primary Dysmenorrhea (pelvic pain and period pain) was considered to be a mental problem caused by dodgy hormones, but it required no treatment as far as I could tell. Secondary Dysmenorrhea was also pelvic and period pain but was assumed to be caused by a physical problem e,g, endometriosis, PCOS but getting a diagnosis and treatment was nigh on impossible. These days the distinction between Primary and Secondary is not made as far as I'm aware, the condition is just called Dysmenorrhea, and is also a dustbin diagnosis from the viewpoint that women aren't believed by many doctors when they complain about period pain.

en.wikipedia.org/wiki/Dysme...

Sparklingsunshine profile image
Sparklingsunshine in reply tohumanbean

I discovered another one yesterday, functional heartburn, which isn't caused by GERD and doesnt respond to PPI medication. Its an over sensitive upper GI tract caused by, yes you guessed it, stress and anxiety.

Sparklingsunshine profile image
Sparklingsunshine in reply tohumanbean

My hubby saw a professor of medicine, who used to be a GP at our surgery until he left for bigger and brighter things, he occasionally did the odd session at the practice seeing patients. Probably to keep his hand in.

He actually described IBS as a dustbin diagnosis, which I thought was pretty refreshing and honest. I have Fibro although I also have Ehlers Danlos and as far as I'm concerned they are one and the same and also have IBS and would agree with your list that they are just BS, meaningless and pointless diagnosis. Not far removed from hysteria and a weak constitution.

humanbean profile image
humanbean in reply toSparklingsunshine

One of the dustbin diagnoses I got given in my 30s was IBS. I was given surgery a few years after the IBS diagnosis to look for a completely different problem. In the process the cause of my IBS was found and fixed. I no longer have symptoms associated with "IBS" and it was such a relief after having issues with chronic pain and a dodgy colon for over 30 years.

humanbean profile image
humanbean

I've had this experience with doctors all my life, to the extent that I now treat as many of my own ailments as I possibly can and am extremely reluctant to see a doctor for anything which is invisible.

I am convinced that doctors dismiss me before I ever get through the door because, obviously, a lot of them will read a summary of the patient's health issues while the patient is walking down the corridor to their office after being called.

The conditions I get lumbered with a lot are depression and anxiety. I was depressed and anxious for decades. But no amount of anti-depressants ever made me better. I was not suffering from a Prozac deficiency!

I found out in recent years that one of the main things that helps my mood problems is optimising my iron and ferritin. It took a long time - I absorb iron poorly and it took seven years to get my iron and ferritin anywhere near optimal.

I also need sufficient thyroid hormones to feel remotely near well. (I have health problems besides thyroid and low nutrients, which reduces my ability to feel completely well.)

Agitator23 profile image
Agitator23 in reply tohumanbean

... am extremely reluctant to see a doctor for anything which is invisible.

Definitely. I concur a hundred percent with that!

Sparklingsunshine profile image
Sparklingsunshine in reply toAgitator23

I make a point of not talking about my Fibromyalgia, its now the elephant in the room. Much like Lord Voldemort its the thing that musn't be named. As everything gets blamed on it. Its such a gift for doctors, they must love me. I just hope they haven't bothered reading my notes.

Hedgeree profile image
Hedgeree

Hi Agitator,

Just echoing much of what others have experienced. I was identified as having mental health problems as a teenager (I'm now 50+) So over the years my mental health issues have been used as an explanation for many other health problems.

When I realised I could probably have hypothyroidism I was continually dismissed by my GP and told 'You don't have a thyroid problem it's your mental ill health. Come back next year for a blood test' It got to the point of me avoiding contact with my surgery as I would be in tears and the stress when I had to contact them was terrible.

It took a few years of battling with them and letters written to GP and the practice manager but I got a referral eventually. But it was really difficult to keep going when you feel so unwell.

Being able to do online requests and consults have made things much less stressful for me as I can often avoid face to face interactions which I don't want to do unless essential.

I was shocked by how thyroid issues are so misunderstood/undertreated.

Batty1 profile image
Batty1

I think these presumptuous notes doctors add to your file do affect your medical treatments …. I just found out my health record says patient has anxiety and now every time something happens thats the first thing they say “oh your anxiety ” is getting the best of you at first I had no idea why they kept saying this until I read it a few weeks ago…..So now have to get it wiped off my record just like the patients never wanted kids comment I had wiped off my record 6 months ago … I never had kids because I had Ovarian Cancer was my filed complaint … Horrible fight to have it removed .

helvella profile image
helvellaAdministrator

Let's think about someone who is feeling bad because they are hypothyroid.

They do what we are encouraged to do, diet, exercise, try to cope. And they start reading about thyroid - the disorders, the treatments, the failures to be treated properly.

But they need to see a doctor to (hopefully) get tested, receive a diagnosis, start treatment.

At that point, isn't it entirely rational to be anxious? Anxiety in response to circumstances that warrant anxiety is not a psychiatric disorder.

And by goodness, doesn't failure to recognise illness, to test properly, to correctly diagnose, to treat adequately, to refer as needed, doesn't all that almost perfectly define circumstances that warrant anxiety.

Leaving aside that anxiety is itself a symptom.

Sparklingsunshine profile image
Sparklingsunshine in reply tohelvella

When I was experiencing really severe balance issues, which affected my ability to function on a daily basis, which literally happened overnight, I got accused of being anxious and frankly if I hadnt been seeking a referral to neurology I would have challenged this doctor to try imagining the last time they had a bad hangover limiting their ability to walk straight, plus brain fog, nausea and head pain, for weeks on end by this point.

And look me in the eye and tell me they a) would be able to do their job, walk about, perform daily chores and b) wouldn't be the tiniest bit concerned and worried about what it was or when it was going to go away. Unexplained symptoms and ill health do make you anxious but they are the result, not the cause. I actually wanted to commit GBH on this doctor.

HealthStarDust profile image
HealthStarDust

I had a document inserted to show it as an 'unsafe diagnosis'.

How does someone go about doing this?

Agitator23 profile image
Agitator23 in reply toHealthStarDust

It was about 8 years ago. I remember I wrote a letter of complaint to the consultant who made the suggestion/diagnosis and copied in my GP and the head of the consultant's department. The hospital set up a resolution meeting, which was attended by the head of department and was recorded. The outcome was that the consultant had to attend a course regarding doctor-patient communication and that a document stating unsafe diagnosis would be inserted in my records. It was a long and unpleasant process but I'm glad I did it.

HealthStarDust profile image
HealthStarDust in reply toAgitator23

I am not sure how much that unsafe diagnosis would make a difference. All they see is ICD codes of deceases and recent prescription history to weigh up health care decisions.

I don’t mean to demean your achievement, but i sincerely doubt it’ll make much difference. Having the diagnosis removed probably would.

Agitator23 profile image
Agitator23 in reply toHealthStarDust

I agree. Had to do it anyway. I did it also because the consultant was (and still is) a danger to patients - especially women. Just read more reviews for him on RateMDs. Still up to his old tricks. It was really was necessary to complain.

Ana_conda profile image
Ana_conda

Not specifically for hypothyroidism, but my son was drugged to the max and locked away in a psych ward for 2 years due to undiagnosed B12 deficiency . It's the same deal, really.

Back in the days when doctors were healers and not licensed dope pushers, psychosis and other mental disorders were usually resolved with a short trial of NDT .

They even had an official medical term for thyroid induced mental illnesses: MYXEDEMA MADNESS.

Your doctor is an uninformed (and most likely arrogant) imbecile. If NDT doesn't do the job, head over to the Pernicious Anemia group and find out how to self treat yourself with B12 injections.

The sad reality of having any diagnosis of mental illness on your medical record is it causes every other specialist who sees it to develop a terminal case of "the stupids".

Neurologists, endocrinologists and even proctologists will all say, " Ehmm... sorry- but your PSYCHIATRIST ( aka witchdoctor) gave you a diagnosis of "schizo-cali- fragilistic- expialidosis "! Then they will say, (am I boring you yet?) ...

"I'm not qualified to treat mental illness. 🤪 Only THEY (the charlatans) understand what (useless poison) to prescribe!"

Yawn... I can practically recite their BS in my sleep.

Be brave! We all have been there ,done that. The beautiful part is that neither NDT nor B12 injections will harm you in any way. And you have tons of very competent, experienced people here willing to guide you 24/7. What's not to like ?

helvella profile image
helvellaAdministrator in reply toAna_conda

Dr Richard Asher - Myxoedematous madness

A short introduction and onward link to Dr Asher's paper.

helvella.blogspot.com/p/dr-...

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