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.

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 18 yrs 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.

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