Here are some stories from people who had a head injury which caused later pituitary deficiencies, including the two most frequent problems - hypogonadism (which can cause erectile dysfunction / impotence, loss of libido, loss of periods, infertility) and growth hormone deficiency, which can interfere with growth in children, and can cause muscle loss and depression in adults.

James Smith (broadcast on Radio Solent 20 March 2012)

Excerpt from Radio Solent programme aired 20 March 2012, telling James Smith’s story

Dominic Blake: That's right Julian, I'm afraid it's the stuff of nightmares, James was a successful executive, quite a high flier, but on a night out in 2007 his life as he knew it pretty much came to an end following a brutal street robbery while he was on an overseas trip. Now he was stabilized and sent back to England for treatment but the long term damage that he'd suffered wasn't picked up by the NHS and he says that that almost cost him his life. This is James' story.

James Smith: I'd been out with clients on a corporate entertainment evening and I guess I decided about midnight to pack everybody else off in a cab and send them home, and I was walking to a cab station, some lads saw me and decided to rob me, I was hospitalized for nearly 2 and a half weeks, 3 weeks, broken ribs, nearly lost my eye, and severe head trauma, with that 3 weeks the visible side could be quite identified and I healed reasonably quickly, but when I was discharged, that was it, I was simply discharged, fed into the system, no real after-care, and I guess that's when I started to - er - fall way behind where I thought I should be in terms of recuperation - and not being able to get up, not being able to go to sleep, not being able to talk properly, I totally went into my own shell, became fearful of pretty much everyone and everything, you know, even the phone ringing was a nightmare for me, couldn't face a thing. I tried to take my life two or three times, and that was after weeks and weeks and weeks of just continuing negative thoughts, I'm still working my way through the whole recuperation process, but some light, a big part of light, was when I stumbled across my endocrinologist and within moments of talking to him he quickly identified what one of the problems could be. During the attack I received head trauma which affected my pituitary gland and my pituitary gland is now almost defunct, completely dead. Now that gland produces major chemicals which  basically enable a human to function so the treatment is to substitute some of those chemicals, hormones, and immediately after receiving those you start to feel better. If I hadn't received help I guess I'd be no further forward, and probably - I'd hate to say it - maybe even dead. I don't think I would have survived the continual frustration of going through the process, going through the machine that is the NHS, getting no further forward every day. Anybody that's had a head injury should be discharged from hospital with a clear plan to look at their blood work, look for signs of this problem, a survival plan if you will. The reality is if you don't get that clear understanding, the knowledge of what's going on around you, what's happening, how it's happening, why it's happening, your life turns upside down. Everything you've ever earnt, worked for, built up in your life, leaves you and you can't understand why, and ultimately that causes a lot of people a lot of stress, and it caused me, particularly me, to want to leave it.

Eddie Barker (see BMJ rapid responses http://www.bmj.com/content/346/bmj.f1988/rr/642573 )

I had three head injuries between 1972 and 2003: an accident when I was driving a truck in 1972, a violent assault in 1985 when I had a basal skull fracture, and the third head injury in 2003. After this I began to suffer from right neck pain from spondylosis, dizziness when I turned my head, attacks of acute vertigo with vomiting (though these subsided), and aches and pains. To these symptoms were added tinnitus and deafness in my right ear, and headaches. In 2004 I was referred to a dizzy clinic, but with no improvement in my health. By 2006 I was still suffering all my previous symptoms, with the addition of pains in my face, and tingling and numbness in both hands. I was diagnosed with Menieres symptoms. My GP found hypothyroidism, which he diagnosed as primary, and prescribed thyroxin. At this point I started to wonder if my problems might stem from my pituitary gland. I had a private BUPA test that showed my TSH levels were borderline low. However, a short synacthen test that year showed no abnormalities.

In 2007, desperate that I was feeling no better, and now suffering from atrial fibrillation, chest discomfort, chronic fatigue and sleep problems, I approached an eminent endocrinologist privately, but neither he nor the endocrinology department at Manchester Royal Infirmary discovered what was wrong with me. In 2008, in fact, I was discharged from that hospital with a diagnosis of chronic fatigue syndrome and a letter that said “We have explained to Mr Barker that there are no signs of an underlying endocrinological problem to explain his many symptoms . . . there may well be an element of psychosomatic or depressive problems . . I am concerned that he may go on to undergo further investigation and medicalisation of his symptoms”, and suggested cognitive behavioural therapy.

Now at the end of my tether after four years of dizziness, I changed my GP in order to be referred privately to Dr Tara Kearney, consultant endocrinologist at Salford Royal Hospital. How I wish I could have been treated by her from the beginning. Here at last, in 2008, I made two discoveries. One was that around a third of head injuries cause pituitary problems [1], and the symptoms can include dizziness, tingling and numbness, headaches and chronic fatigue. The other was that the short synacthen test is not a reliable way to diagnose ACTH or growth hormone deficiency, as it misses about 40% of cases [2]. At last I was given the right tests “ the glucagon stimulation test and the arginine test “ which together showed that I was suffering from growth hormone deficiency and ACTH deficiency. Dr Kearney said of me, ”I have certainly had conflicting opinions from several endocrinologists, however I have checked several insulin stress tests and glucagon tests and I am certain that Mr Barker has evidence of pituitary dysfunction.” At long last I began the appropriate treatment.

Earlier, one of my GPs and a consultant did say it “was all in my head”, and this, sadly, turned out to be prophetic, though not in the way they meant.

I wish I could say that this was the end of my troubles, but I had been so long deprived of growth hormone that my abdomen had swollen and I developed divarication of the rectus sheath and below that an incisional hernia. I am still very ill. I feel that if only there had been more awareness of the considerable risk of pituitary failure after head injury, and the shortcomings of the short synacthen test, my whole story might have turned out differently. But it will be a comfort to me if my story alerts doctors and helps others to be diagnosed.

References

[1] Schneider HJ et al, Hypothalamopituitary Dysfunction Following Traumatic Brain Injury and Aneurysmal Subarachnoid Haemorrhage: A Systematic Review, 2007, JAMA http://jama.jamanetwork.com/article.aspx?articleid=208915

[2] Dorin RI, Diagnosis of Adrenal Insufficiency, 2003, Annals of Internal Medicine, https://annals.org/article.aspx?articleid=716603 The MEDLINE database was searched from 1966 to 2002 for all English-language papers related to the diagnosis of adrenal insufficiency, and it was found that for diagnosing secondary adrenal insufficiency, the sensitivity of the short synacthen test was 57-61%

PS (20 May 2013) I have discovered from a Freedom of Information request that in fact my short synacthen test was not quite normal. I hope to be able to supply the correct figure in due course.

A 34 year old man who responded through my website

I can sympathise with your son and can totally understand why he did what he did, its so hard trying to keep it all together sometimes. I have been in some very low places these last few years too and its hard to carry on sometimes, you just want to be normal again! I am hoping 2012 will be better!

My head injury wasn't anything major, no blood or anything and I didn't seek medical attention for it at first, I know this is very different to your son’s story as his injury was more serious.

Unfortunately I was drunk at the time of my accident - very foolish but it was an accident, I fell and cracked my head on the concrete . . . Literally the next day I felt so strange and have been suffering ever since . .  I have felt ill every day for the last 8 years, this is not an over exaggeration, I have just not felt right. Don't get me wrong I am able to work and do everything everybody else does but don't enjoy things as I should as I constantly feel ill etc. My marriage broke up due to me feeling ill and my life turned upside down. For now, to cut a long story short it has taken me 8 years to get a diagnosis, I have spent thousands of pounds trying to find out what was wrong with me but to no avail until September just gone . . . . I think the GPs wanted rid of me and thought it was all in my head. [He goes on to describe the horrendous difficulties he has encountered with his GP, even after getting a diagnosis of hypopituitarism after seeing an endocrinologist privately (low testosterone, low cortisol and no growth hormone). He still has not received treatment.]

The same young man talking about suicide (trying to comfort me about our son):

“A few years ago my sister’s boyfriend at that time, dad killed himself. This was like 15 years ago, It was very upsetting but I just couldn't understand why somebody could do such a thing, not only to themselves but to the people around them that love them so much, its the people that they leave behind that suffer isn’t it? and I used to think that it was a really selfish thing to do. Life is amazing I thought why would you want to do it.”

15 years on and believe me, it is not a selfish thing to do what so ever. Sometimes you feel that there is just no way out and taking your own life is the only option. The emotional pain Chris would of been suffering would of been so great, I have a tear in my eye as I write this as I know exactly what kind of emotional pain he would of been in. Before and after my wife left me I had considered it many many times, thinking this would be the final outcome if I didn’t get fixed as I didn’t know how much more of it I could take. Chris will be in peace and rid of his pain, things like this do unfortunately happen to good people!

People say that suicide is a cowardly way out, I use to think this way but I now actually think that it is the other way around. It was Chris's life, he knew how he felt, I think he actually did a very brave thing. I feel I am a coward for not actually taking my own life, I would be too scared! Honestly the pain somebody can suffer is just horrible, emotionally its just pure torment and not very nice. I always think, god if I can just get better then I can turn everything around and be the person i am supposed to be, but it doesn’t help when doctors don’t or can’t help you, they don’t actually care in my opinion and I have honestly seen a different side of life having going through what I have gone through. Yes, I look normal (well fairly normal) and I can do most things but people just can’t see what you are going through despite how ever much they care and understand or want to help, like I say its impossible and this is just the way it is.

Kenneth

I was attacked by a gang in N Z a couple of years ago. I sustained brain damage to three areas of the brain, including the frontal lobe. I have been doing some research work with Imperial Medical College. It appears I have damaged my pituitary gland. I am waiting on the results of their tests.

Rashid

I fell down from a one story building and rolled down another story on cement steps at age 7. I am 55 years old now and have a normal growth but since childhood had sexual problems. I have very small testicles and even now my Hormone level is 224. I have read that childhood head injury can cause problems with initiating & controlling sexual maturation during childhood puberty and later in life. It can also cause deficiency of Gonadotropins (Follicle stimulating hormone and Luteinizing hormone).

Robin

I had a head injury at the age of 7, like your son. I can relate to a lot of the problems that he had. I only became aware myself that something was wrong two years ago - 28 years after the accident. However I did suffer from problems throughout this time but they were never picked up by doctors or related to a previous head injury.

I thank God every day that I was referred to Dr Kearney and believe that she is doing everything possible to help me. It has been tough up until now and quite lonely - not always being understood with the way I have felt emotionally and physically as no one had any reason for me to act in such a way.

Ashley

Your son's story mirrors my own life. I apparently had a head injury in 1972, aged 8 or 9 about which was was not told until approx 1993. I think this probably explains why I don't have memories before age 9 (which makes life difficult enough) though my memory is now efficient. A few years after the injury, feeling unwell I was diagnosed with migraine. I have had another 30 years of paralysis, paresis and other symptoms which read exactly like those of Hypopituitarism but remain definitively undiagnosed. I have recently, following my own research responded to Pyridostigmine (Mestinon) and now Prednisolone (which I am told I cannot stay on). Whether the latter was acting as a steroid hormone replacement or as an immunosuppressant I don't know for sure.

I would like to thank Tara Kearney for her pioneering work in this field, it gives hope and solace to people like me and will hopefully prevent others suffering needlessly, in pain and also enduring stigma, abuse and humiliation etc largely stemming from the ignorance of others.

Hayley

Her mum's friend writes:

Hayley has been a champion ice skater since the time she was a young child (she is almost 18yrs old). About three years ago, Hayley had a very bad fall on the ice. She suffered a severe concussion and had to stay home from school for almost 6 months. Her neurologist also advised that during that time she stay in a dark room and not exert herself. Soon after Hayley's head injury, her menstruation stopped and she gained a significant amount of weight. Further investigation revealed that she had caused damage to her pituitary gland and she was put on steroids that made her gain even more weight. After the steroids, she was given other medication to help start her periods again. Eventually her period returned. From the time of her injury until just recently, Hayley was very depressed and angry. Her mother told me that it was very sad to see her daughter not enjoying her teen years like her friends, and especially not having any boyfriends. Hayley is now finishing her last year of high school in Switzerland. She also has a boyfriend. When Hayley first suffered the concussion, my friend took her to two different neurologists in Toronto who did nothing about her symptoms. It was a famous neurosurgeon who lives in Montreal who figured out what Hayley's problems were caused from.

Three more stories . .

Bev, Michele and Linda all had head injury and suffered pituitary problems later in life, and give their moving stories here. Their head injuries may not have caused their hormone problems: so far there is no research supporting a connection between head injury and prolactinoma or adenoma. However their stories are important and may strike a chord with some readers.

Linda

It is the only time I have thought back, and never linked my condition with trauma, but when I was around 12 I had a nasty fall off my bike, I banged my chin and several stitches, my periods were never heavy like most of my friends and at 15 my periods stopped never to return, that was 1964, I have gone through life, frequently visiting doctors with lots of problems but was never diagnosed with a Macro Prolactinoma until January this year, and that was only because I was so fed up with the headaches/sinus problems that I insisted on a MRI scan, which revealed the large tumor, my prolactine levels were 35,000, which are now falling due to the Cabergoline medication (1 tablet twice a week), I am now 60 years of age and very disappointed my condition was not identified when I was younger, perhaps I would have been able to have children, and not felt when I visited the doctor with all! my problems that I was imagining the symptoms . . . I thought I was on my own with this condition, I was told it was very rare, and that is why it was never detected.

Postscript

There is more I would like to add to my story, I didn't think about it until I read one of your other stories. When I was 13 years of age, a teacher hit me over the head, very forcefully with a book, I saw stars at the time, and now just by reading the other story by Michele everything has fell into place, because shortly after that I started getting hot flushes, and not feeling myself, three years later my periods stopped completely, after being very erratic, I had various tests and internals, and it was decided I had in fact had a menopause at the age of 15, could this heavy bang on the head from a school teacher have caused all my life's troubles?

Michele

My head injury was mild as I did not require hospitalization or any medical treatment. What happened to me was when I was about the age of 12, at school, a boy picked up a very large and thick hard covered book and smashed it on the back of my head with full force. I actually saw stars and passed out. I was told by my teacher that I was knocked out for a good minute or two. As I mentioned, I did not require sutures or medical care, but I developed a large hematoma right at the area of the injury. I remember feeling very nauseous for many days following the incident, not to mention the terrible headaches I had for months. What I find interesting all of these years later, is that the area where the pituitary gland is located is about the same area where the book hit me. The reason why I remember this is that I was constantly rubbing that area with my fingers and it use to irritate my family members. It became somewhat of a habit. My friend says he does not know of any studies that link acromegaly to head or brain injuries. However, I do recall my endocrinologist giving me a printed "patient story" and that patient had been in a car accident and had a head injury and wrote about a connection between the head injury and her pituitary adenoma (hormone secreting).

Bev

During my childhood years I loved to ride. I would spend every weekend at the local stables mucking out, cleaning tack and leading the beginners around the paddock.

My reward for all this hard work was a free one-hour lesson on a Sunday afternoon. During one of these lessons I fell quite heavily and banged my head. As I was wearing a hard hat it was felt unnecessary for me to go to hospital, but was told I must go if I suffered any permanent head aches or problems with my vision.

In 2000, after two years of intensive tests I was shattered when I was told that I had developed a benign tumour on the pituitary gland at the base of my brain, and was diagnosed with Cushing's disease, caused by a prolactinoma.

I had been aware of hormonal problems since I was 18, but I knew that the weight gain around my stomach, my red, moon face, weak muscles and bones, high blood pressure, purple stretch marks, irregular periods, increased facial and body hair alongside severe depression, were all so much more.

The consultant explained that when there is something wrong with the pituitary gland, which is located behind the bridge of the nose at the base of the brain, the body produces too much of the stress hormone cortisol, causing Cushing's disease. Untreated the disease has a 50% mortality rate.

I was referred to a neurosurgeon at Derriford Hospital in Plymouth, and admitted on 8 December 2002.

The procedure would be to make an incision between the upper lip and gum, tunnelling behind the nose, removing the tumour via the nasal passages. The complications and risks were that any damage to the optic nerve may cause sight impediment, damage to the nasal passages may require a bone graft from the thigh and the worst scenario, severing of a main artery causing death on the operating table. I was so desperate I really didn't care.

The surgery lasted two hours, the tumour was completely removed and the operation declared a success. After 24-hour care on the high dependency unit, I was allowed home after a few days to continue my recovery at home.

Return to work should have been within 6 weeks, but I developed acute muscle pain and was unable to walk. I needed a course of intensive treatment from a physiotherapist and an osteopath that gradually improved my health over the coming year.

After the operation I was initially prescribed 30mg of Hydrocortisone daily and continued taking this for 5 years, but then started to experience early Cushings symptoms again, induced by excess steroids. My GP changed the dose to Prednisolone and over 12 months I was able to complete a withdrawal programme & am now medication free.

I have a regular 18-month consultation with my endocrinologist to ensure there is no regrowth.

Although it took 22 years of misunderstandings and desperation, a further two years of tests and two hours of surgery, I am well aware that I am very lucky.

I am left with type II diabetes and have many minor health issues, which have forced me to work from home, but when I look back to a time when I was 6 stone heavier with a 44" H bust, male pattern hair growth and the desire to die rather than live this wretched life, I can at last see a brighter future, hopefully with the knowledge that pituitary disorders will now be diagnosed and treated with the early awareness learned from patients like me.

Jon

I have a Pituitary Neoplasia and I had a head injury at the age of four. My cousin picked me up, flung me over her shoulder, and lost her grip on my legs. I slid, face first, down her back and landed on my forehead on concrete. It drove my head backward, toward my tailbone, and the doctors...I think...were quietly astounded that my neck did not break and that I should have died...right there in the back yard of my childhood home. I don't understand why I survived.

And . .

A case of hypopituitarism caused not by head injury but by neurosurgery

Byron (by his mother)

At 8 years old Byron had two episodes of neurosurgery 6 months apart. The first was pretty straightforward but the second was not so smooth and post-surgical complication and a low GCS score made for a very slow recovery. None the less after about a year all seemed to return to near normal except that he was given growth hormone in his early teens just in case, as growth was a little slow but nothing too much to worry about. At 16 years all clear, all tests normal, so discharged from endocrinology. At 17 - 18 lots of problems started to unfold including worrying degrees of depression and anxiety and after a number of years of distress and uncertainty Byron was diagnosed with cognitive deficits caused by head injury resulting from the surgeries. Now aged 27 years, following years of problems with depression, anxiety, extreme lethargy and sleep deprivation etc and after persistent visits to the GP and other health care professionals in the secondary sector and endless discussion about symptoms - finally, after insisting on a referral to an endocrinologist Byron has recently been diagnosed with hypopituitarism and has commenced treatment and a number of his symptoms have already been alleviated. Byron has been articulate and persistent about his symptoms for a very long time, it is astonishing that, with his particular history and the known possibility of hypopituitarism post head injury, this was overlooked time and time again by health care professionals, which also included those in associated fields.

Alice (with thanks to Pituitary Life July 2011)

I was first diagnosed with cranial diabetes insipidus (CDI) in 1997; my symptoms began a year prior to my diagnosis. I have a pituitary tumour, which has caused the condition - one possible reason for the tumour could be a head trauma that I sustained around the age of seven years, but this has never been medically confirmed.

My symptoms began with, literally, an overnight change in my urinary patterns.

I remember suddenly needing to pass huge volumes of urine every hour and, along with that, the most incredible thirst which was never quenched. During this period, I was only able to sleep for an hour at a time, as my bladder refill rate was hourly. My appetite was affected and I felt so full of water that I ‘sloshed’ as I moved about! As a result, I was feeling tired and lethargic.

There was a particularly worrying point when my stools became dark green in colour. It was at that time I carefully researched my symptoms and felt sure that I had DI because of the sheer volume of dilute urine I was producing - the great challenge was trying to get across to my GP how ill I was. At the time it was very unpleasant, distressing and totally stopped my life.

As for my working and social lives, they both pretty much halted at this time. I had to be sure of being near a toilet all the time and carried litres of water to drink. If I went out, I would plan routes via public toilets.

Other aspects of my life were hugely affected too. Travelling long distances was precluded - getting stuck on a motorway was incredibly distressing, as it could mean wetting myself in my car. I remember how difficult it was to try to hold the excessive amounts of urine and get to the toilet on time to avoid the embarrassing situation of leaking. Sexual activity needed to happen around the time that my bladder was not refilling as it can be impossible to reach climax with a full bladder.

I do feel that I have been hugely affected as a person by the extreme nature of CDI symptoms. My mother would say I have changed dramatically. I am less tolerant and get very stressed and over-emotional now. I find I don’t cope as well with situations that are stressful, which wouldn’t have bothered me before. I am more insular, my memory has been badly affected and my confidence has been shaken too. I also have bad migraines.

I have now managed to find a medication that suits me, so I know exactly where I am with toilet needs. This allows me to have a much more normal life and freedom to do what I want, when I want. I am no longer restricted when I go out and I don’t need to consider whether I’ll need to sit for long periods of time.

Jill Mizen (see BMJ Rapid Responses http://www.bmj.com/content/346/bmj.f894/rr/643479 )

Jill did not have a head injury, but her experience of having a normal result for the short synacthen test and then being told she had chronic fatigue syndrome has important implications for head injury survivors.

I lost a lot of blood during my first pregnancy and had raised blood pressure in the postpartum period, though this problem resolved in a few days. However, my blood pressure first rose in a sustained way in 1981 when I was 34, and it was initially controlled with a diuretic, Hygroton K.

By 1987 I had rapidly gained weight and was suffering from fatigue, muscle and joint pain, pins and needles, dizziness and metabolic alkalosis. I had hypokalaemia, sodium at the high end of normal range and raised triglycerides. I had gynaecological problems and low T4 was noted. My blood pressure had been well controlled up until then, but when for some reason Hygroton was discontinued, my blood pressure immediately rose. I felt very ill by this stage, and a locum told me ‘stress of work’ could be affecting my health. I went on sick leave in 1988. I did this with sharp regret because I had a successful career with BT and was looking forward to a promotion. In fact my employment was terminated on health grounds in 1989, when I was only 42.

In 1990 I was once more prescribed anti-hypertensive medication, but my blood pressure was now difficult to control, despite experimentation with several different medications. My gynaecological problems were not resolved. I was given annual anion gap tests from 1992-5, but no investigations were arranged to discover why my blood pressure remained difficult to control.

My triglycerides were not checked between 1988 and 1997, but a blood sample given for an annual routine blood test in 1997 was described as “a grossly lipaemic sample, unsuitable for analysis.”

In 1999 I was referred to a cardiologist because of my blood pressure and raised triglycerides, but although he treated me until 2001 he did not discover the cause.

Things looked up in 2002 when I changed my GP. She associated raised triglycerides with hypothyroidism, which was diagnosed and treated. She referred me to a gynaecologist who discovered fibroids, for which I was operated on, and my gynaecological problems ceased, with my periods. My blood pressure also improved and one of my three antihypertensive medications was dropped.

However, in 2006 my health was deteriorating once more, and my GP referred me to an ophthalmologist, a cardiologist and finally an endocrinologist.

The endocrinologist thought I might have primary hyperaldosteronism. He arranged an aldosterone: renin ratio test, but unfortunately the testing protocol was not followed and it gave a normal result. He also gave me a short synacthen test, which again produced a normal result. Consequently he diagnosed me retrospectively with Chronic Fatigue Syndrome going back to the 1980s.

In 2010, I was diagnosed with Conn’s syndrome, primary hyperaldosteronism. In 2012 I had a glucagon stimulation test, which revealed deficiency in growth hormone and cortisol, and I was finally diagnosed with likely lymphocytic hypopophysitis, which is defined as inflammation of the pituitary gland due to autoimmunity.

The short synacthen test I had been given in 2006 might have been expected to show the cortisol deficiency, but as I now discovered, this test is only reliable for diagnosing primary hypoadrenalism when the problem is in the adrenals, not hypoadrenalism as caused by pituitary dysfunction, where it misses 40% of cases

I have been prescribed hydrocortisone for cortisol deficiency and I already feel considerably better. It is the first Christmas for a long time that I have not had an infection and have felt able to cook Christmas lunch, and in the last few weeks although this may seem trivial I have been able to wear make up, the first time since 1994.

Following the glucagon test, I have started a trial of human growth hormone.

What lessons can be learnt from nearly 30 years of needless ill health and my loss of what I feel would have been a satisfying and successful career? Experiences like mine can seem less dispiriting and wasteful if they save other people from the same fate.

First, if my raised blood pressure as a young woman had been properly investigated when it became difficult to control, I might have got my life back comparatively quickly. Secondly, my raised triglycerides should have rung warning bells far sooner than they did. The lack of awareness that aldosterone production is also stimulated by the action of ACTH produced by the pituitary gland is concerning. Finally, I feel strongly that there should be much more widespread awareness about the inadequacies of the short synacthen test, and much greater caution before telling a patient they have chronic fatigue syndrome. This should be a diagnosis of absolutely last resort, when the pituitary possibilities have been thoroughly checked out.

Robert Francis Hunter’s story

I had a good up-bringing but my dad developed a mental health problem and lost his job when I was very young. It was a shame as he was a Technician Electrical Engineer and made good money. My mother was a clerical short-hand typist.  My two brothers have good jobs: one is an engineer and the other is a manager.

When I was 10 years old I was hit over the head with a golf club and needed stitches.

When I was 12 years old I got a paper round and then after 6 months I decided to set up my own paper rounds. I delivered the morning papers before school then the evening papers after school, I did this Monday – Sunday and on a Saturday evening I sold the racing sport papers to men in the local pubs.

I cycled from Land’s End to John O’Groats when I was 15 years old with my uncle. We cycled 977 miles and cycled it in just 9 days. We raised 1000 for the Chest, Heart & Stroke Charity.

I did work experience at Wm Low when I was 15 as I really enjoyed baking.  The Manager gave me a Saturday job and I worked there till I was 16.

I left school when I was 16 with six standard grades and got an apprenticeship as a baker with Scotmid. It wasn’t the kind of bakery where you could learn much as they bought a lot in frozen and I found it hard going having to cycle 10 miles at 5am to get there for the 6am start, then 10 miles back home. I was too tired to go out with my friends on the weekend and became depressed so I left and got an apprenticeship with a local bakery which was great as they made everything from scratch. The bakery closed down a year later but luckily for me Wm Low were looking for a apprentice so I worked there till I was 21.

Tesco bought over Wm Low and changed the start time from 6am to 4am which was hard going. I left and worked in a small bakery for 2 years but they closed down. I then got a job as a baker at Safeway. I worked there for 2 years.

I started doing courses in 2002 and qualified as a fitness instructor, personal trainer, weight-training instructor, GP referrals, Swedish massage therapy, Sports massage therapy. I then went and did a HND in Health, Fitness & Exercise.

I competed in the 2004 British Natural Body-Building Championship and came 6th out of 30.

There was a gas explosion in my house in 2006 and I wasn’t physically injured but developed PTSD.

In 2008 I went from having a six-pack to starting to put a lot of weight on and went to my GP in December 2008 with a swollen face, limbs and stomach, flu-like symptoms and chronic fatigue and erectile disfunction. However nothing was done until I went back to see him in March 2009 with the same symptoms. The GP requested tests which indicated pituitary insufficiencies.

I was referred to the Royal Infirmary of Edinburgh’s Endocrine Clinic and Dr Stimson started me on Levothyroxine for my Thyroid insufficiency. He then did a Synacthen test as my ACTH was undetectable. The test indicated I had adrenal insufficiency and I was started on hydrocortisone.

I went back three months later, the swelling had gone away but I was still very overweight and fatigued. I was seen by the head of the clinic, Dr Patrick, who ran more tests which came back with Testosterone still being  too low and IGF-1 being low but he decided I would struggle with injecting myself with Growth Hormone medicine and that hydrocortisone and levothyroxine would do for now. There was no rationale for him coming to this decision other than the financial cost of the medicines.

I was seen annually by different consultants up until 2016, I kept complaining of erectile disfunction and fatigue but nothing was done. During this time I made suicide attempts in 2007, 2011 and 2012. On my third attempt I had a head injury and was knocked unconscious.

After this, during a nervous breakdown, I refused my medication. They did a synacthen test and my hydrocortisone was stopped but I still got my levothyroxine.

I contacted the Pituitary Foundation’s Nurse in 2015 an she advised me to get my GP to run basic Pituitary tests, my GP asked Dr Patrick who said ‘No’ even though my GP didn’t need his permission and could have gone ahead anyway.

I did a Subject Access request for my medical file in 2015 and it came back that the last few years they hadn’t been checking testosterone, cortisol with ACTH, or IGF-1. They were only checking my thyroid.

I then asked my GP to refer me to the Borders General Hospital, she copied in Dr Patrick and I got a letter saying they were not allowed to refer out of Lothian and that a second opinion had been made with Professor Walker. I went and saw Professor Walker but he refused to do a definitive test for GH deficiency.

I asked a different GP to refer me to the Borders General Hospital and she did. I was seen by Dr Williamson from the Borders General Hospital in 2016. She was lovely and ran basic tests.

I then found Joanna Lane who lost her son Christopher to suicide in 2008, which she believes was caused by a pituitary gland illness. She knew a consultant in Salford, Manchester, called Dr Kearney and I went to see her in 2017. My church and Joanna paid jointly for basic private tests conducted at Spire Edinburgh for her to look at when I was down to see her. She was lovely. She said the test warranted a definitive test for GH deficiency and I went in October 2017 to have a Glucagon Stress Test which came back with Severe Growth Hormone Deficiency under <3ng/ml.

Dr Kearney registered me with Salford hospital and I received a 9-month trial of Growth Hormone medicine and also Testosterone gel.  It made a huge difference to the quality of my life.

My health board NHS Lothian refused to take over the GH medicine but I still got Testosterone gel.

They said I couldn’t be under an English consultant to receive the Growth Hormone medicine and that the Borders General Hospital was where I would need to go.

I went back and saw Dr Williamson at the Borders General Hospital, she said “I will ask Dr Kearney for a copy of the Glucagon Stress Test and when I receive it I shall write you a prescription for Growth Hormone pens”. Dr Williamson wrote a prescription but NHS Lothian refused to honour it as they said it was for children only and that the NICE GH adult protocol was no longer valid in Scotland.

I researched this and in fact it was still valid in Scotland but Lothian have put a clause in that your GP or Consultant can ask the Lothian Joint Formulary Board to consider authorising the medicine. So much for an end to the “Postcode Lottery”

Dr Williamson said to me “I want you to get the Growth Hormone medicine, I will put it through my pharmacy” which she did and I currently still receive the medicine through her.

The Pituitary gland is so complex. When I was seen by Dr Kearney in 2017 my cortisol was high and I got a test for Cushing’s disease which came back that I didn’t have it.

In 2018 I went to the Royal Infirmary of Edinburgh with swollen limbs and face and flu-like symptoms but got told it was a long-term chronic health problem and to see my GP.  I’m a size 9 and had to wear size 12 slipper as my feet were that swollen. Swollen legs can be a sign either that your heart isn’t working properly or that you have adrenal insufficiency and I think more people need to know this. I saw a cardiologist who said I didn’t have heart problems. In fact it turned out to be adrenal insufficiency.

In 2019 Dr Williamson did a Synacthen test and I got started again on hydrocortisone and after three months the swelling and flu-like symptoms went away.

I’m on full hormone replacement it has made a huge difference to the quality of my life. However, it’s not a cure and I have good days and bad days and will never be like I was before my illness first started in 2008. The support of my church has helped me, and since receiving growth hormone I have made no more suicide attempts.  I hope I never will.

Kenneth Starr’s story

I was born in 1943 and grew up in Northern Ireland. In my youth I enjoyed playing hockey and tennis. I played these too at teacher training college in Manchester and later at senior level in Africa and in England. Even at that stage, I had some stamina and fatigue problems, and depression. Then I worked abroad teaching Agricultural Science and other subjects in Zambia in the late 1960s and early 70s and during that time I was exposed to an organophosphate (a pesticide called malathion) at work.

It was then that my depression deepened and my muscles, gut and brain were affected. By 1971, just before my brother John (RIP) died tragically in a car accident, I was on anti-depressants. However, they made me much worse, so I stopped taking them. In 1974 I suffered an unprovoked assault on my return from my second teaching contract in Zambia. I went out drinking with a friend and was going towards the hotel bar when I was struck a terrific single blow to the left-hand side of my jaw. I fell backwards and my head rebounded off the marble tiles. I came to, for a split second, felt a great rip inside my head, and then I was unconscious. I learned later that I had been shaking all over like a boxer when KO’d. Later that evening I was beaten up again and left unconscious outside my parents’ home. I was suffering from what is now called Secondary Impact Syndrome (SIS) which can be fatal. Rugby and other sports bodies have recently become aware of this. I didn’t want to cause my parents further distress after my brother John’s death, and I was too stubborn to go to the police or the hospital in spite of my seriously bruised spine, broken teeth, temporary double vision and the blood in my urine and faeces. I had to lie in a foetal position in the dark, as the light hurt my brain.

The following year I had to terminate teaching contracts in Zambia where I had been for the previous five years, and Papua New Guinea. The contract in Papua New Guinea meant I had to have a battery of vaccinations at my local Army barracks before I flew out there, but I was too ill even to start teaching. I had to return. After that my depression got much worse. I had shock treatment for seven or eight years and I was given eight bouts of electro-convulsive therapy (ECT). This psychiatric treatment regime caused me to suffer a severe breakdown in 1982 and I became suicidal after that. I had been on Ativan (which contains the active ingredient lorazepam, a benzodiazepine similar to valium, though I have been told it is at least ten times stronger) and I became seriously addicted to it for five years. Nobody in the NHS could get me off it. In fact I took part in a case study on Ativan addiction.

I took myself to a mental hospital for help. It was a terrible time. I ended up in 1982 locked up and fighting for my life. During my period in the mental hospital I became agitated, was restless and had hallucinations. I suffered from dreadful thirst and I was foaming at the mouth. I had at least one serious convulsion caused either by withdrawing from Ativan or by an injection I was given, which brought me close to death. I nearly bit my tongue off and my brain felt like a car engine with no oil, grinding on itself. My hearing and sense of smell were heightened but I seemed to have no taste left. An artery in my mouth burst and the thick, lumpy red blood nearly filled a jug that was handed to me. The damage to my mouth and tongue were permanent! Even during the recovery stage I was so weak, and unaware most of the time, that I had to be bathed.

When I got home I prayed to die. I could take no more. All my energy had gone, and so had the elasticity in my body and skin. After one of the ECT treatments my legs were like lead and I felt semi-paralysed. My condition was made worse by the fact that the consultant psychiatrist delegated my care to a trainee member of her team who had inclinations towards Christian Science, haranguing me about Jesus and forcing me to carry out demeaning and exhausting manual tasks. The ECT, or perhaps the accompanying anaesthetic, worsened my condition permanently. Seemingly, ECT should not be given to B12-deficient patients or to those affected by organophosphates and the medical profession needs to be aware of this. My medical records covering this time have been destroyed, so I cannot check whether the large injections I was given increased the addiction problem and helped to cause this terrifying crisis and everlasting suffering.

Afterwards, I was not able to play tennis or hockey any more and life would never be the same again, though eventually I found other interests. I have suffered from steadily increasing depression and extreme fatigue for forty years plus and my weight gain has been abnormal. These are classic symptoms of growth hormone deficiency, yet it was only in 2014 that I was finally diagnosed with this, and also with low testosterone. It is likely that my hypopituitarism (PTHP) has been caused by the double effect of organophosphate exposure and head injury. I’m sure my brain has been injured in many other ways, but I think I would have had a better chance of a normal life if my pituitary damage had been spotted immediately.

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Personal Stories