7 August 2011
On Saturday 5 Aug I visited my New Forest nephew and he has said he’ll help me raise awareness of post-traumatic hypopituitarism (PTHP). He had good ideas, eg to approach viagra websites, so we tried a few and I’ve already had a promise from one to include something on head injury in their FAQs. I would never have thought of this on my own. He also thought cycle helmet manufacturers might include something on the information that goes in the box - as he said, quite a few customers buy new helmets because they’ve had a head injury and wrecked their old one. Another idea was to approach priests because they counsel people with problems. It’s so good to have a fresh approach.
So, apart from a couple of Viagra emails over the weekend I’ve emailed Dr David Delvin on Netdoctor, asking if he’d change his ED article. That would make a big difference.
My plan for the next few weeks is to focus on ED, as well as carrying on the existing threads of the BBC Health website and the head injury / suicide figures. But I won’t have all that much free time (because of childminding), just 2 days a week and a few evenings. Still, the important thing is to keep things ticking over and hope my nephew gets keen and puts some time in.
I emptied out the telephone-kiosk-shaped money-box today and it had £15.80 of road-kill in it, and 2 euros, plus a heap of unidentifiable foreign change.
11 September 2011
A long time since last time and not much done. The BBC still haven’t put anything on their website though they are always prompt in replying to me with a reason. The latest promise is that the revised version will be back from the GP next week.
Surgery Door changed their ED entry on their website - not entirely to my satisfaction but this was my fault as I failed to back up with research my statement that hypopituitarism could have late onset - but it’s better than it was before, and I have sent them the research now so maybe they’ll include it.
The Sexual Advice Agency have also made some changes. They put ‘occasionally, severe head injury . .’ which was not at all what the research I sent them indicated, and now in response to my expostulations they have promised to omit the word ‘severe.’ I keep checking but they haven’t done this yet.
Netdoctor have still not responded to my request, received and acknowledged 17 August.
Patient UK have changed their ED entry exactly as the research I sent them indicated. This admirable website stands out as having integrity, and no agenda except to give the doctor and patient the information that they need, accurately and accessibly. Hurray that they exist.
The Brain Injury Rehabilitation Trust updated their leaflet about sexual problems way back in June, but have still not printed it and still not changed the version on their website. However a reminder from me this week prompted the reply “I will find out but as far as I am aware it is with the printers and once printed a pdf will be put on the website. Should be any time now.” Also mentioned the possibility of introducing a pro forma for medical tests on admission to their services, which means they could specify endocrine function tests.
It’s hard to fit in head injury things with childminding. There are so many things I should do and I don’t, not just because of shortage of time, but because I waste it and dither.
PS I wrote a letter to the New Scientist who this week have an article about mild head injury and how it can cause early-onset Alzheimers. My letter of course points out that it can cause hypopituitarism too. I have bet John £1 that they won’t publish it.
14 September 2011
The BBC have actually made some changes to their health website! I’m giving myself a few days to think about whether they include everything they should.
15 September 2011
I’ve had time to look now, and think they have done well on the Head Injury and Depression pages, though I still have some reservations about their Erectile Dysfunction entry, and would like them to make some changes to Infertility and Chronic Fatigue. But anyway, I’m glad I made a fuss about the Action Line, all those months ago, because the changes are well worth it.
20 September 2011
The New Scientist didn’t publish my letter, as I expected, and John gave me my pound. The information I sent them was relevant to their article, important, and with the potential to help a substantial fraction of their readership (if you count not just the head-injured but their relatives and friends, as of course you should). I wonder on what grounds they would justify rejecting it if I asked them?
The BBC Health website responded to my letter asking for further changes, so I have to say I am now perfectly satisfied with their entries. The Sexual Advice Association have also made further changes (omitting the word ‘severe’ and making other changes too) so all credit to them as well.
|Nothing from Netdoctor despite a prod.
I wrote to the Mayo Clinic. Also to my MP again. The MoD have responded to all my, and his, questions so there is no further reason for delay.
25 September 2011
It’s Chris’s birthday today. He would have been 35. We went up to Yorkshire yesterday setting off at 5am and arrived at Otley in time to meet 3 of his friends and go for a walk with them. We walked around the Chevin - a blowy day, with lovely views - and part of it was through woods, where the leaves are starting to come down. This is his part of the world, where he chose to live, and where I visited him during the last five years of his life, and just being there fills me with useless sadness.
26 September 2011
Last night I wrote to the NetDoctor Doctor’s wife again (poor her, being pig-in-the-middle, I think she is a nice woman) listing all the other websites that mention head injury as a cause of erectile dysfunction. I have a good list now: BBC, BUPA, Patient UK, Sexual Advice Association, Headway, Surgery Door, CKS. What would someone think, who had visited these other sites already, if they came to NetDoctor and found not only no reference to head injury, but a dismissal of hormonal causes as rare? Would they not lose confidence in Netdoctor . . ? This made me feel better. And then I wrote to BIRT saying their two years of dispiriting delay had made me suspect that they considered the plight of people like Christopher of minor importance, and asking them to prove me wrong. If I could have thought of anyone else to write a sharp letter to I would have, but I was tired and went to bed. Today is my one free day and I am using it to catch up and tidy up.
7 October 2011
The NetDoctor email yielded no response, so I have to abandon that now. Writing to BIRT did result, perhaps coincidentally, in the new sex leaflet appearing on their website on this link http://www.birt.co.uk/images/BIRT_2011_Sexuality.pdf so all credit to them.
I spent Sunday forgoing a walk with our group in the miraculous Indian summer weather (healthy exercise, pub lunch, camaraderie) in favour of sitting at my computer all day writing to the State of Mind campaign - a campaign set up after Terry Newton’s suicide to tackle mental health among rugby players. I emailed all the panel members I could find listed on their website, and had a nice warm response from one of them (a woman, naturally) followed swiftly by an email from Ernie Benbow, the main organiser, not addressed to me but to this woman, copying me in. It said “This lady has sent an email to everyone associated with State of Mind . . I have advised caution in replying to these types of emails as we have no evidence about the validity of the individual and or the company she represents. This is a matter for further discussion by the Programme Board about responses to such emails. We need to display caution and vigilance. . .I have fielded other such requests recently from people who are simply peddling a commercial interest.” I later, having established my credentials, received a stiff semi-apology from him, followed by another email saying “Mrs lane For the purpose of a forthcoming meeting and to ensure i report accurately could you please tell me how you have acquired my email address and those of my colleagues?” So I replied that if he googled himself he would see that it was quite easy, and sent him a sample link. I also reminded him that we were on the same side: “We both want these young men to stop committing suicide and my information may help.” But nothing from him until, yesterday, a formal refusal to do what I asked, which was to post information about head injury on the State of Mind website and to include it in education sessions for Super League and amateur clubs.
I despair. What is the use of setting up a group to stop suicide if you are silent about what is likely to be a major cause? Why should he be so hostile? What is the matter with him?
However one good effect was that Mike Farrar the national Tsar for Sport, who is on the panel, responded saying my information was important and he had passed it on to the clinicians setting up the National Centre for Excellence in Sport and Exercise Medicine (he hoped to make an announcement later this autumn) and would ensure they ‘factored it into their thinking.’ Fingers crossed that nothing happens to prevent this.
20 November 2011
Again a long time since I wrote. Looking back over my emails I see I didn’t manage to do much, and nothing much came of what I did do. I tried to persuade AvMA, the ‘charity for patient safety and justice’ to tackle NICE about their failure to warn the head injured patient in the hospital discharge advice note.
In my last email to you I contrasted the situation of the Headley Court TBI patient, who gets screened for PTHP, and the NHS TBI patient, who doesn't even get warned. I probably gave you the impression that I wanted screening for everybody, but in fact my campaign is much more basic than that. I just want patients to be warned.
I am sure you know much more about medical ethics than I do, but isn't it one of the patient's human rights to be informed about the risks and treatments of his/her condition?
Here we have a condition where the symptoms are hard to distinguish from other sequelae of TBI - where patients aren't screened, though there are consensus statements saying they should be - and where the onset may be delayed, perhaps for years. What is going to protect the patient except a warning?
Nobody I have spoken to has ever been able to advance a satisfactory argument as to why it is OK to keep patients in the dark about a condition that may wreck their relationship and cause them to kill themselves, when all the time there is treatment that could save them. I do not expect you or your supervisor can think of one either.
It would be greatly to AvMA's ultimate credit if it would tackle NICE about their refusal to amend their sample hospital discharge advice.
As expected, I received no answer to this - I actually felt it was unanswerable - and after nearly a fortnight I wrote a follow up, and got a ‘bear with us, we’re very busy’ reply. I don’t know how long to leave it.
What else? I wrote to someone high up at the Royal College of Nursing who has been promising since June 2010 to write an article for their publication (I don’t know its name) about PTHP. I have reminded her so many times, and sent so many references - even practically written it for her - but all I get are more promises which I suspect are quite empty. Maybe I should approach someone else at the RCN. [June 2012: I misjudged her, she has written it, it’s been accepted, and I didn’t realise what a long scholarly piece of work it was going to be.]
I’ve also been corresponding (fruitlessly of course) with my MP. I am going to post this correspondence on a separate page. Oddly I find that the NICE correspondence, which I would have thought was terminally dry, is the most visited page on this website, so maybe it will be the same with my parliamentary dialogue.
I wrote to the Guardian, where I have two contacts, saying “Thousands kept in the dark about a treatable condition - surely this is a story?” but just got passed on to Denis Campbell, who never replied, despite my writing twice more.
I noticed that the BBC Health page on childhood head injury still had no mention of PTHP and wrote, and this at least has been amended.
One other good exception to this gloomy list is that my AvMA correspondent sent me a copy of an article by Carol Jackson and Michael Barnes which has just appeared in a legal journal. This tells you everything about PTHP except that it may have delayed onset, and that children may grow normally and still be growth-hormone-deficient. Apart from these omissions it’s a good article and should alert most personal injury lawyers. http://www.pannone.com/media/articles/personal-injury/pituitary-problems-after-brain-injury One of my most disappointing failures was to persuade an endocrinologist to write an article for a legal publication - I felt that once the personal injury lawyers started ensuring their clients got treated things would start happening. So maybe they will now. Also Prof Barnes addressed the World Congress of Neurology in Marrakesh on PTHP last week and emailed me saying it seemed to go well and that several neurologists came up to him afterwards saying it had never occurred to them about hypopit as a cause for erectile dysfunction, tiredness etc.
I went to the UKABIF annual conference ten days ago and actually met Carol Jackson, who said she wrote the article because she’d heard me speak. I made a few more contacts there, but don’t think any of them will come to anything.
Like most people I’ve had a bad cold / cough that has gone on and on, which may account for the low mood. But this weekend John and I went on a couple of country walks in the autumn sunshine with our walking group, which made me feel better. What I like most are the pub lunch-stops. Yesterday one of our co-walkers, a lovely zestful girl, gave us a glimpse of two huge breasts as she stooped to sit on the bench opposite, remarking that the pub was emptier than she expected. What she actually said was ‘They’re not very full today,” and what John thought, as he told me later, was “Oh yes they are.”
18th January 2012
So, the Christmas holiday is over. I had two weeks off from childminding my granddaughter but hardly got anything done, partly because I felt ill and tired with my cough. It must have gone on for more than 3 months now. After getting Alastair Campbell’s advice I did at least finish my 32 letters to the MPs on the Mental Health All Party Parliamentary Group and the Health Select Committee. Researching them I thought there must be one of them, surely, who would take PTHP seriously. There are three qualified doctors - Baroness Murphy, Dr Daniel Poulter and Dr Sarah Wollaston - who I have hopes of. I also thought Guy Opperman and Jon Cruddas sounded energetic and principled. And there’s Dame Anne Begg, who has Gauchers disease and probably suffers terribly with it (but I can hardly believe she would have any energy and strength to spare from all the other things she does.)
28th January 2012
Well, answers from the MPs have started to dribble in, five so far. I think it was worth writing to them as I discovered that one MP was already aware of PTHP and ‘shares my concerns’ about the under-diagnosis and is happy to raise it with the MHAPPG.
I went to the Oliver Zangwill Centre on 25th to a free conference celebrating their 15th year. I thought it was lovely of them to let me come, and I was glad I made the 2 hour drive there because I met a personal injury lawyer with whom I’d corresponded in 2009, who told me that she has referred 50 of her clients to their GP for endocrine checks and not one of them has been diagnosed with PTHP, even though you would expect about 10 or more among that number. She thinks the GPs don’t know the right tests to give, when to give them, or how to interpret the results, and I agree with her, going by the experiences of two people with HP that I’ve had correspondence with. They both tried for several years (8 years in one case, 3 in the other) to find out what was wrong with them, got no help from their GP, were treated as if their symptoms were psychosomatic, spent thousands of pounds privately visiting various specialists, and eventually achieved diagnosis by, in one case, getting considerable help unofficially from a retired endocrinologist and in the other by the good luck of being referred to a cognitive behavioural therapist who thought outside the box and realised something organic was wrong and suggested this person should look at the Headway website - which had information about hypopituitarism on it.
How very bad it is that the Royal College of GPs has done nothing (despite my approaches to them) to inform GPs about this - how cruel and callous that patients should have to suffer so long and spend so much on finding diagnosis. And the ones I’ve mentioned only managed it because they had the funds to keep looking. And they are the lucky ones, the 4% who get diagnosed. (Actually, one of them not so lucky - she died of a perforated bowel last year, surely partly because her body’s ability to fight had been undermined by being starved for so long of the hormones it needed.)
The other thing I discovered is that SIGN, the Scottish equivalent of NICE, are producing a guideline on rehabilitation after head injury which is due out later this year, and which apparently doesn’t mention hypopituitarism. I have written to them asking them to confirm this.
The last presentation at Oliver Zangwill was made by Mr Tim Lodge, who had had a minor head injury which had devastating consequences on his mood, memory and mental function. It turned out that he had pituitary damage. He had been rehabilitated at OZC and made a good enough recovery to go back to his job in engineering design, and to be the ‘old daddy’ that his younger daughter pined for (‘When am I going to get my old daddy back?’). He did not mention receiving replacement hormones but I confirmed with the director that he had had it, and I guess that it helped his recovery considerably.
21 June 2012
The longest day in the year. It seems amazing that I haven’t written here for 6 months. I have been in a low, struggling state for a long time, just managing to look after my granddaughter but not much else. My cough still won’t go. Anyway, what’s happened?
MPs and Royal Colleges: The MP letters bore fruit because Valerie Vaz MP took up the issue and sponsored an Early Day Motion in February, which can be found on http://www.parliament.uk/edm/2010-12/2777 The EDM sums the situation up well, and whatever it may lead to of itself, it’s useful for me to be able to quote it, because it gets the message across and reassures whoever I’m speaking to that I’m not making it all up. So thank you to Alastair Campbell as it all sprang from his suggestion. VV has also written to the Royal Colleges, in parallel with an initiative of mine. I wrote to all the consultants who’d been helpful before, asking them if they would sign a letter to the Royal Colleges asking them to help raise awareness of PTHP. 31 consultants and charities signed. I wouldn’t say this has had much effect however. The Royal College of General Practitioners , the most important one, still hasn’t even answered. The Royal College of Nursing and the Society for British Neurosurgeons have been helpful and offered to put information on their websites, but I have been so feeble I haven’t pursued this yet.
SIGN: I found that as I suspected, the SIGN rehabilitation guideline is not going to mention PTHP.I wrote protesting and got the brush-off, then wrote again, this time supported by the signatures of many of the consultants who signed the Royal Colleges letter, and this time SIGN offered to prepare a separate guideline, just on PTHP. I didn’t feel overjoyed, because it was a replay of what NICE did, and I felt it was a delaying tactic, and a way of hiving the whole thing off into a separate less visible compartment, but several of the consultants advised me to accept the offer, and I reasoned that since I wouldn’t have even had the offer without them, I should do what they said.
So then I spent weeks on the SIGN application form for the separate guideline, in particular on preparing an economic argument to justify treating people. Along the way I discovered many interesting facts. One is that a suicide costs the country £1.5 million (lost output ‘waged and unwaged’, but more the ‘intangible human costs’). Another is that a family breakdown costs £367,000 (disturbed children achieving less at school, legal costs, health and criminal consequences). And a third is that depression costs £750 a month, per patient. I had absolutely no idea of any of this, and it certainly works out significantly cheaper to treat people. Hopefully the consultant who offered to submit the application will be able to forward the form this week or next.
Radio Solent: In March (to backtrack) Dominic Blake of Radio Solent produced a feature on PTHP, in which Dr Partha Kar, a Portsmouth endocrinologist, and James Smith, a patient, and I, all spoke. James had been beaten up and head-injured, had found himself unable to speak or sleep, very depressed, had attempted suicide more than once before he was diagnosed. It wasn’t clear from the programme, but he had to wait for about 5 years before he ‘stumbled across’ Dr Kar, who realised at once what was wrong.
Like the EDM, this programme has given me a useful tool. It is so good to have a statement in the public domain that establishes that PTHP can make you suicidal. I have had private statements from other people, but they are more easily dismissed - I could be fabricating them.
I owe Dominic Blake’s involvement to Christine Lord, who lost her son Andrew to vCJD. She is wonderful, a no-nonsense fighter, a journalist (and friend of Dom’s), and I wish her every success in her battle to bring to justice the politicians who were responsible for his death.
CBT counsellors: My other initiative since Jan was to write to all the CBT counsellors on the CBT register alerting them to PTHP. Interestingly I started off writing quite a dry email, overloaded with references, (rather like what I’d written to consultants) but then I asked for advice from a counsellor friend who said ‘No, make it more personal, and don’t give them the research until they respond’ so I did, and found I got more replies straight away.
6 August 2012
Another long gap. In the meantime I had an email from NICE which said:
You will see from pages 4-5 of the scope that as part of the update process, we will be looking at information for patients and carers on discharge from the emergency ward or observation centre, but we will not be looking at discharge and follow-up in a broader sense. The recommendations made in the current guideline, CG56, which relate to discharge and follow-up, including advice about long term problems and support services, will not be updated.
In regards to the topic suggestion for a new guideline on the identification of pituitary failure following head injury, there are no plans to take this forward at this time.
In other words, they may (perhaps!!) amend the discharge advice to warn the patient, but they are not doing any more than that. And they aren’t developing the separate guideline on PTHP either.
This reminded me to follow up on SIGN, the Scottish guidelines group, who have made a similar offer of a separate guideline - I thought, ”What an easy way out for them, to offer this, make me go away, and then say sorry, we’re not doing it after all.” It took a bit of work to get an answer out of SIGN but eventually one came: “Clearly I cannot prejudge our topic selection process, or that of Healthcare Improvement Scotland. From the above, however, I think it is clear there is certainly a risk that the outcome for your proposal to us could be the same as that from NICE.” So there we are. As one of the consultants who supported the call for their main guideline to include PTHP commented to me, “I would have thought that if time and money are at such a premium, it would be dead simple to add a comment into the guideline something along the lines of 'PTHP is common after head injury and appropriate diagnostic tests need to be considered in anyone presenting with appropriate symptoms'. That doesn't exactly require alot of work...”
I am wondering what their response would be if I simply asked them: “Do you want PTHP patients to be diagnosed?” It’s clear that they don’t, but how would they avoid saying so?
On a more cheerful note, I’ve made a new friend. Last Friday, which is my free day from childminding, I settled down to write an article that needed specifically to focus on obesity as a consequence of hypopituitarism. For my final paragraph I wanted to quote someone who’d been diagnosed with it, so that the reader would be left with a picture that would linger after the dry facts and statistics faded. So I googled and found Catherine Hughes’ blog http://wheniwasyou.wordpress.com/category/hypopituitarism/ , and was electrified. Definitely a ‘why haven’t I met you before?’ moment. Whose was this intelligent, eloquent, honest, angry, incisive voice? I found her current web page with articles she has written for the Guardian, and learned that after years of battering unheard at medical doors, she has just, at long last, been diagnosed with hypopituitarism. So she has been suffering unnecessarily all of her adult life from obesity, and (what is worse) from the chorus of sneering abuse that goes with it - along with feeling constantly ill, along with rearing four children one of whom has suffered a brain injury, along with having a very low income - and yet she’s had the guts to keep fighting and writing. If she can write so powerfully in the face of these handicaps, stand back for when she gets the growth hormone!
May 31 2013
Today I went to the Annual INVEST IN ME International Conference. At it, during question time, I stood up and said (or I hope I said, because I was so nervous that I’m not sure if I got everything in) “I’d like to pick up what the last questioner said, when he mentioned the pituitary aspect. I came here today, not because I have been touched by ME, but because when our son committed suicide I learnt that around a third of brain injuries damage the pituitary gland. This is a relatively simple condition. The gland is damaged. It can’t make the hormones. You replace the hormones. The patient feels better..This is a very under-diagnosed condition. A recent ‘Inside Health’ programme stated that between half a million and a million people are affected. This is up to 4 times the number who died in the 2004 tsunami. So where are these people? I would guess that some of them are in this lecture theatre today. They have been told, wrongly, that they have chronic fatigue syndrome. They account for about a third of the people who are diagnosed with chronic fatigue syndrome or fibromyalgia. My question is, why are people diagnosed with ME not routinely tested for hypopituitarism? If they were, a third of the people here whose lives are being slowly destroyed could be rescued by correct diagnosis and treatment.’ I got a clap. The answer I got was ‘We are aware of other possible causes and would normally be very careful to take the patient’s history and exclude other possible diagnoses before giving a diagnosis of ME.’ To which I said, ‘But this is not happening. The number of people annually diagnosed with hypopituitarism is around 2,000, which is very different from the figures mentioned on ‘Inside Health’. Why do you think it isn’t happening?’ And I got a vague reply about the complexity of the symptoms (I think) and lack of awareness. Not the real answer anyway, which is ‘because the government doesn’t want it to happen.’ Afterwards one of the Trustees approached me saying she’d commented to the Chair that she’d been coming to the Conference for years and never heard anyone talk about the pituitary before, and the Chair had replied ‘We’re not supposed to allow those questions’ (I hope I’ve remembered the wording right, it might even have been ‘We’re told not to allow those questions.’) I just wonder where those instructions come from?
Dr Clare Gerada spoke in the afternoon, warning people that NHS changes might mean they got left out of the picture unless they made a fuss. She got the response that the audience would have preferred to hear about the Royal College of GPs’ e-module about ME/CFS for GPs. She said ‘certainly’ and rapidly read out a summary in which the words ‘competent’ ‘kind’ and ‘caring’ were repeated too often. A stormy exchange followed with many horror stories of GPs not being any of these things. I said ‘The module talks about ‘management’ but I didn’t hear so much about ‘diagnosis’. Does the e-module remind GPs that up to a third of apparent ME patients may actually have hypopituitarism and suggest referring them to an endocrinologist?” She simply said “No,” without a trace of apology in her manner, and I was so taken aback that all I could think of was to mutter ‘Perhaps it should’ before the microphone moved away from me. I wish so much I had said ‘Why did this obvious step not occur to the group who you say worked on this e-module for six months? Was it by ignorance or was it intentional?’
I should perhaps give a summary of what I have done since I last wrote here. I had a lucky break when Lynne Wallis wrote a story about Christopher in the Daily Mail last August. I got a little flurry of Scottish media attention over Christmas and in March when SIGN brought out their guideline ignoring the request of 50 consultants and charities to include 2 sentences about PTHP. Mr Patrick Statham, neurosurgeon, called the decision ‘so daft it’s beyond comprehension.’ It is so lovely when honest people speak out in a forthright way. My other big break came when Dr Mark Porter agreed to do a slot on ‘Inside Health’ where Mr Belli (neurosurgeons are the best) pointed out the huge number of undiagnosed people. This was on April 9th.
Otherwise I have been sustained and encouraged by the friendship of Jill Mizen and Eddie Barker, who have both fought their way through to diagnosis after years of terrible neglect by the NHS. They are both wonderfully ready to battle to help other people despite ongoing health problems. They deserve medals.
LETTER FOR LIA
I read your two articles (‘How we nearly lost the plot’) and the one in Guardian Comment, (‘ME is still woefully misunderstood’) about your husband’s ME. You said that the Lightning Process had helped him, and if he is really all right now, maybe you don’t need to read this.
But just in case he isn’t, can I tell you about hypopituitarism?
When the pituitary gland stops working properly, through physical injury or autoimmune disease, the results can include chronic fatigue, depression, loss of sex drive, infertility, obesity, any or all of these, plus other symptoms such as intolerance of heat or cold, headaches, sleep problems and others too numerous to mention.
It is a very, very under-diagnosed condition. The fact that it can be caused by head injury gives us a handle on this, because research has established that around 30% of head injuries result in it, and we know there are around 135,000 head injuries a year in the UK. On a recent ‘Inside Health’ programme, the number of undiagnosed cases was estimated at between 500,000 and a million – and that’s just from head injury, never mind the other causes.
Only 2,000 people a year are diagnosed with hypopituitarism. Those thousands of others who aren’t so lucky, get told they have ME/CFS/fibromyalgia and given counselling and exercise therapy. I say this with some confidence because most of the people I know who have finally, after many years, achieved diagnosis, have had to fight their way through a misdiagnosis of CFS. Some of their stories can be read on these links. (http://www.bmj.com/content/346/bmj.f1988?tab=responses ,http://www.stopthethyroidmadness.com/stories-of-others/phils-story/http://www.bmj.com/content/346/bmj.f894/rr/643479 )
When you bear in mind that around 3 million have been diagnosed with CFS or fibromyalgia, and remember the possible million undiagnosed with hypopituitarism, you will see that the chance that Michael has been misdiagnosed is substantial, and it would be well worth him getting himself checked out by an endocrinologist. This is a condition that can be treated!
Not all websites list the same diagnostic tests, but most suggest basal hormone tests in testosterone, LH and FSH, prolactin, cortisol, thyroid profile: free T3, free T4 and TSH, IGF1, and growth hormone.
As well as those, he should be given a provocative test to measure his growth hormone and cortisol levels when his blood sugar is low - the insulin stress test is the 'gold standard' but is unpleasant, and contraindicated in some patients. The glucagon stimulation test is nearly as good. There's also the GHRH+ arginine test but that only measures growth hormone. The short synacthen test is unreliable missing 2 people in every 5.
If the information I have given you helps Michael, it would make me very happy if you would let me know, but I’d be even happier if you would use your great talent as a journalist to spread the news far and wide, and rescue many thousands of people from a miserable half-life. I do hope something good comes from my letter to you.
5 November 2013
I’m pleased that journalist Jon Danzig has included a section about pituitary damage in his interesting essay about free will. The link is http://jondanzig.blogspot.co.uk/2014/11/we-are-chemistry.html I quote the relevant section here:
It’s now recognised that suffering a head trauma can cause damage to the pituitary, causing serious symptoms hours, years or even decades later.
The pituitary is a pea-sized gland, located at the front base of the brain behind the eyes, that is responsible for the body’s hormones - chemical transmitters that control energy, mood, growth, appetite, libido, reproduction and many other vital life functions.
These problems can show up later causing problems such as fatigue, behavioural changes, anxiety, depression, sexual dysfunction including impotence, loss of stamina, infertility, diabetes insipidus and life-threatening complications such as adrenal crisis.
The symptoms, if they don’t resolve, can usually be successfully treated, but only if the condition is recognised and diagnosed. Otherwise, the damaged pituitary can result in serious and chronic quality of life issues.
This is not a rare occurrence; some experts believe that hundreds of thousands could be experiencing the effects of undiagnosed pituitary malfunction following a head injury that might have occurred years or decades earlier. It’s estimated that as many as 30,000 cases of post-traumatic pituitary damage could be missed in the UK every year.
She’s felt compelled to do so following the tragic suicide in 2008 of her son, Christopher, at the age of just 31. It was only after his death that Joanna and her husband discovered that their son had been suffering from depression, fatigue and impotence – typical symptoms of pituitary damage (hypopituitarism) - that also resulted in the breakup with his girlfriend.
At the age of 7, Chris had fallen out of a tree, seriously injuring his head. He was in a coma for a week with a fractured skull.
Doctors now believe that the head injury could have damaged his pituitary gland, leading to the symptoms that so sadly resulted in his suicide decades later. Joanna is convinced that this is what happened, and wished there had been more awareness at the time.
If diagnosed, her son could have been treated with hormone replacement medicine, to restore the chemistry which his damaged pituitary was failing to produce, resulting in devastating symptoms.
Joanna has widely publicised her campaign for all hospitals to routinely check for pituitary damage immediately after any head injury, and regularly for years later. Her aim is for everyone to understand the vital need for long-term pituitary function checks following any significant head injury. She’s been pushing NICE to include this advice in their guidelines for head injuries, and feels frustrated that, so far, they have refused to do so.