• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Doctors are failing to spot the brain injury that could be behind 30,000 cases of 'chronic fatigue'

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Daily Mail
17 May 2014
How doctors are failing to spot the brain injury that could be behind 30,000 cases of 'chronic fatigue'
  • Patients misdiagnosed with CFS when they have brain damage
  • Post-traumatic hypopituitarism (PTHP) is often cause by head injury
  • Symptoms include depression, obesity, fatigue and chronic pain
Thousands of British patients suffering from chronic pain and fatigue could be misdiagnosed with psychological problems when they unknowingly have a type of brain damage.

Those people who complain of the symptoms are not given a series of blood tests that can pinpoint the problem, meaning the true cause is not spotted. Patients are then condemned to years of misery and ineffective therapies.

The major cause of the damage is head injury, which can be relatively mild. However, viruses, tumours and even animal bites can be a trigger.

The National Institute for Health and Care Excellence was considering including the condition – called post-traumatic hypopituitarism (PTHP) – in its most recent guidance to doctors on how to treat head injury.

article-2631263-1DEF490B00000578-637_634x676.jpg

It would have meant patients who turned up at A&E departments or GP surgeries with head injuries would be warned that the symptoms of PTHP – which also include depression, obesity, high blood pressure, loss of libido and even infertility – could take years to emerge.

However, when the new recommendations were published in the spring, there was no mention of the problem. The decision has been condemned as ‘nonsensical’ by an expert who treats PTHP.

Currently, patients who present with tiredness and chronic pain are often told they have chronic fatigue syndrome (CFS), or fibromyalgia, once other physical causes have been ruled out. They are offered psychotherapy, exercise and antidepressants. However, these are currently found to be ineffective in up to 70 per cent of CFS cases.

Numerous studies have shown that between 20 and 30 per cent of the 135,000 patients who suffer a serious head injury also experience damage to the pituitary gland, which is situated below the brain, behind the nasal cavity.

The gland produces vital hormones that govern many bodily functions, including growth and repair, the sleep-wake cycle and how we react to stress. If the pea-sized organ is damaged, it may stop producing one or more of the essential hormones, triggering the wide-ranging symptoms of hypopituitarism.

Studies suggest there could be between 18,000 and 30,000 cases in the UK each year.

Treatment involves lifelong hormone replacement therapy, which is said to be highly effective but costs up to £6,000 a year.

Professor Christopher Thompson, one of Britain’s foremost experts on PTHP, says: ‘The overwhelming evidence from research studies carried out independently in a wide range of places, including the USA, Europe and Turkey, is that hypopituitarism occurs in up to 30 per cent of people who have survived moderate or severe traumatic brain injury. There is no debate.

‘However, the failure to make the right diagnosis after such injury means patients miss out on essential treatment. That it’s not included in the NICE guidelines [for treatment of head injury] is nonsensical.’

...

Read more: http://www.dailymail.co.uk/health/a...-000-cases-chronic-fatigue.html#ixzz322IbpZZe
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Thanks @Firestormm. It looks like an important alternative diagnosis, not the least because its treatable. There have been discussions about this kind of thing in a number of threads though. However if it was more often found, diagnosed, and treated, then many thousands would be better off.

There is something important here that might be overlooked. With up to 30,000 cases per year, and misdiagnosed, there could be over 100,000 such cases, easily. That might account for a big chunk of the non-ME CFS diagnoses!
 
Last edited:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
oh boy, not another common missed diagnoses thrown into the "CFS" washing machine.

I think we need a list of alternative diagnoses each with a link to a story backing each one (like this article) so people can more easily go throu the alternative diagnoses list and work out what they may or may not have. We cant trust our doctors to do this so its simply up to us to try to make sure all this other stuff is ruled out.

This is especially important to those who arent showing the common ME abnormalities on their test results! I refused to accept my own possibly ME diagnoses until I had 3 of my test results showing common ME abnormalities. I suggest others do the same as you certainly wouldnt want to miss something possibly treatable!!
 

golden

Senior Member
Messages
1,831
oh boy, not another common missed diagnoses thrown into the "CFS" washing machine.

I think we need a list of alternative diagnoses each with a link to a story backing each one (like this article) so people can more easily go throu the alternative diagnoses list and work out what they may or may not have. We cant trust our doctors to do this so its simply up to us to try to make sure all this other stuff is ruled out.

This is especially important to those who arent showing the common ME abnormalities on their test results! I refused to accept my own possibly ME diagnoses until I had 3 of my test results showing common ME abnormalities. I suggest others do the same as you certainly wouldnt want to miss something possibly treatable!!

I need lists like this.
What are the common M.E. Abnormalities tests again please someone?
 

Min

Guest
Messages
1,387
Location
UK
This highlights that CFS is merely a dustbin diagnosis; once it is given by lazy doctors all hope of testing or treatment for the patient’s real illness is gone, they are now in the nightmare world of the fatigue clinics.
 

Tito

Senior Member
Messages
300
I remember 10 years ago there were accounts of people with CFS being treated with growth hormone who were experiencing what seems to be a complete recovery (going back to full-time employment). i don't know why the idea was abandonned.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Daily Mail said:
Currently, patients who present with tiredness and chronic pain are often told they have chronic fatigue syndrome (CFS), or fibromyalgia, once other physical causes have been ruled out. They are offered psychotherapy, exercise and antidepressants. However, these are currently found to be ineffective in up to 70 per cent of CFS cases.
It's interesting that this is a slightly more accurate description than what I'd expect in an article purely about CFS. Still not giving the full picture though.
 
Last edited:

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
I need lists like this.
What are the common M.E. Abnormalities tests again please someone?

Scroll down and look to links on the right at http://sacfs.asn.au/index.html .. till you see the Canadian Consensus Overview (third link down under ME/CFS Diagnostic Criteria and Guidelines) . In that there is a whole page on abnormalities found in ME/CFS (which are basically abnormalities found generally in ME).

(I'd tell you exactly where to find it in that document but cant open the link as I accidently stupidly removed the program in my computer that opens things. I think it may be towards the end of the document or right at the end.. its clearly titled .. you could also try to look for it in the index of the document).
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Interesting!
I've had concussion "officiall"y twice but know it' smore than that
and MRI scan showed slight abnormality of pituitary at same time as blood tests revealled it wasn't regulating testosterone production
but the assholes did no follow ups, no SPECT or more MRIs though they said such should be done....cause with ME/CFS in UK, they won't do follow up scans
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
http://www.pituitarysociety.org/public/specific/hypopituitarism/signs_html.aspx

The pituitary gland produces a range of hormones, and has a duct that directly leads to the hypothalamus. Not all hormones may be directly affected. I suspect that in ME and CFS most of these hormones needs to be tested. Several of them are implicated in ME.

Interestingly a problem with too much melanocyte stimulating hormone, not to mention low cortisol, could potentially explain why the tops of my feet are brown. Its not a tan.
 
Messages
13,774
I'm not sure about the specifics of this article, but just from minimal reading about brain injury and CFS it seems obvious that there's going to be overlap, and that also lots of people whose brain injuries aren't identified and diagnosed will end up with a diagnosis of CFS.
 

A.B.

Senior Member
Messages
3,780
I have pituitary abnormalities and should probably investigate more. According to my understanding, pituitary dysfunction can cause symptoms similar to CFS. I also do not have any obvious signs of infection, and do have blood sugar regulation problems, which are both consistent with symptoms coming from a pituitary problem. It has been difficult to get help with this in the past though.
 

A.B.

Senior Member
Messages
3,780
So, what are the tests for this? Hormone levels?

Various stimulation tests that can track how well the endocrine axis responds to stimulus, but I don't know much and neither seem my doctors.

PS: the patient in the article had an ACTH stimulation test, which was negative (it is more suited for diagnosing adrenal than pituitary problems). She then had a glucagon stimulation test which is more reliable and came out positive.
 
Last edited:

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I've had a fair few head injuries, several going back to when I was a child.
I went headfirst over the handlebars of my trike, landing on the road on my head;

an (ex) brother bent an iron bar an inch in diameter over my head,
(I'd pinched a handful of sand from his side of the sand pit),

and my Dad dropped the big set of swings we had in the back garden on my head.
He just turned the hose on me, to clear up the blood and chill it to stop the bleeding.

I've fallen dowstairs drunk, and (apparently) bruised my brain.

I don't believe a doctor was involved at any time.

I don't feel hunger or thirst, I've always had dreadful sleep problems. I don't think I even have circadian rhythms!
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
So, what are the tests for this? Hormone levels?

From the article:

During her illness, Jill was screened for deficiency in the hormone cortisol, a characteristic of hypopituitarism. However, the test – known as the short synacthen test (SST) – produced a normal result. ‘That was when I was told I had CFS,’ she says.

Yet SST misses two of out every five cases where the cause of cortisol deficiency is damage to the pituitary. In 2007, Jill came across a magazine article about Christine Wrighton, who was incorrectly diagnosed with CFS when in fact she was suffering from hypopituitarism.

‘Eventually, after huge persistence, Christine was able to pay privately for a test which the NHS would accept. This proved she had been right all along – her pituitary was faulty. Her story opened my eyes,’ says Jill.

Coincidentally, the two women were patients at the same hospital and struck up a friendship. Jill says: ‘Doctors believe Christine’s hypopituitarism was caused by inflammation – she suffered rheumatoid arthritis for 30 years. In 2005 she had a virus that wouldn’t go, and the fatigue started then.’

Jill chose to be retested privately with the more reliable glucagon stimulation test, and was diagnosed as being deficient in cortisol and growth hormone. This proved she too had hypopituitarism.

...

Dr John Newell Price, consultant endocrinologist at the Royal Hallamshire Hospital in Sheffield and chairman of the Pituitary Foundation Medical Committee, says: ‘A “pass” on an SST may not always mean cortisol deficiency is excluded.’ He recommends referral to an endocrinologist if symptoms persist, so that the glucagon test can be carried out.

Dr John Newell Price, consultant endocrinologist at the Royal Hallamshire Hospital in Sheffield and chairman of the Pituitary Foundation Medical Committee, says: ‘A “pass” on an SST may not always mean cortisol deficiency is excluded.’ He recommends referral to an endocrinologist if symptoms persist, so that the glucagon test can be carried out.

...
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Whilst reading this a memory came back to me of when I was involved in a road accident - I was a pedestrian and got hit by a car as I was crossing the road - about 3-4 years before first becoming ill. I rember the feel of the metal on my face and the noise it made as my head hit the car. I came too in the middle of the road. I didn't go to the hospital because by the time the ambulance came I felt ok and just went home.

I also have had two post partum haemorrhages, which can cause sheehans syndrome. Dr Myhill wondered if I might be suffering from this. ACTH stim test (short one) normal, but ive never actually seen the results. The endo then wouldn't see me again as the test result was normal.
 

Aileen

Senior Member
Messages
615
Location
Canada
Perhaps some of you should contact the Pituitary Foundation mentioned in the article to find out where to go to be assessed. Also what parts of your medical history, including falls etc that should be stressed to the doctors. Ask how to get certain tests and if you've tried unsuccessfully in the past, see if they have advice on a different approach to take.
 

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
I'd forgotten too, I was in an accident, in which the car rolled over, many years ago.
We all just got out and ran away.

I can remember, like you, @justy, the "coming to" bit, and other tiny odd details - like stuff falling in my eyes, and worrying it was broken glass and going blind. (It was just the car floor muck)

I didn't know the folk I was with - they were the friends of the kids of my parents' friends we were staying with, and I had been told the driver hadn't been drinking anything but grapefriut juice.
Turned out he hadn't, but that alcohol was the only drug he wasn't on, and the car boot was full of illegal stuff.

Sensible advice, @Aileen!