Excerpt from ‘Mother of a Suicide’ by Joanna Lane
The very worst thing was the not knowing.
There were things that I did know: that I wasn’t well; that I was experiencing fluctuating, seemingly unconnected symptoms; that I was unable to persuade any doctor bar my GP to listen to me; that I wasn’t believed by those who did at least hear my pleas out.
But I had no idea why I was so unwell so much of the time and that in itself was as frightening as the variety of symptoms I experienced. Dizziness, fainting and palpitations; poor recovery from surgery; weight gain; exhaustion; profound depression and overwhelming anxiety; hair loss (and, ironically, hair growth where no woman wants to see it); skin discolouration; apathy; nausea; agitation; a lack of emotional control; social withdrawal and isolation – all of these things and more were less frightening than the simple fact that nobody could give me a reason for my suffering. No-one understood.
Just prior to my diagnosis, I was living such a secluded life – trapped in an abusive relationship – that I rarely left my house. I had almost – but not quite – given up hope of ever comprehending what was wrong with me, or of being given the simple credence I so desperately needed.
Statistically-speaking, it is likely that my pituitary malfunction is the result of a small, benign brain tumour – a microadenoma – but this has not been proven, as the one MRI scan of my brain was not targeted. Other possible origins for my condition are: a simple congenital defect; a previous head trauma; haemorrhage during childbirth; or some other, idiopathic, cause. I will probably never know, but it seems likely that a congenital defect would have manifested sooner whereas I was already symptomatic when I did indeed haemorrhage during the birth of my second child. The only head trauma I have ever suffered occurred at the age of three and, although I still bear the scar in the centre of my forehead, I don’t believe the accident was severe enough to have caused brain damage.
I suppose it doesn’t really matter but I like to think of the cause as a tumour – an actual physical entity that I can blame for the awful things that I have to endure.
From the vantage point of knowing and understanding what is wrong with me, I can look back and realise that I first showed signs of being unwell in my late teens and early twenties – my college and university years. I would come home from my classes every day and go straight to bed, despite having had a proper night’s sleep the night before, sleeping for two hours between around four and six pm, before getting up, feeling somewhat discombobulated, and studying or socialising for the rest of my evening. I wasn’t the most gregarious of students, instinctively avoiding the usual high levels of alcohol consumption, nor did I do particularly well in my degree studies notwithstanding the evident potential that had earned me a place on a prestigious course in the first place.
I countered my constant malaise and exhaustion with another instinctive measure – exercise. I rode my bike everywhere; swam almost daily; went roller skating, horse riding, to aerobics and trampoline classes. My weight fluctuated but never reached a point at which it became impossible to buy high street clothes (I reached a size 16-18 although in today’s sizes I would probably have been more like a 14-16) and, much as I would have liked to have been slimmer, I had less trouble then in accepting myself than I do now.
Thus it was that I was twenty-six and pregnant with my second child before I began to suspect that something might be significantly wrong with me. Multiple thyroid function tests had previously returned apparently (just about) normal results but, when I became pregnant again, after a completely normal first pregnancy, I found myself unbelievably, incredibly sick. Unable to properly articulate the severity of the nausea and exhaustion I was experiencing, I allowed my doctors to write my symptoms off as a difficult pregnancy but I have never forgotten those harrowing nine months.
Life went on – another difficult pregnancy ended in a beautiful home birth – until my third child was a few months old and I began to feel agitated and nauseous. Initially, my weight plummeted, then my body expanded with horrifying speed, all my weight piling onto my belly to the extent that my GP ordered pregnancy test after pregnancy test. Desperate, I begged for every test that might explain what was happening and, for the first time, my thyroid function tests came back as abnormal and I thought that I finally had an answer. Relieved, I took my thyroxine tablets and waited for them to take effect.
They never did. I briefly regained control of my weight after taking up running, but I wasn’t ever well again. My weight ballooned once more, before my fourth pregnancy caused such extreme agitation, sickness and exhaustion that I was placed under the care of a psychiatrist in the hope that he would be able to ameliorate my distress. Powerful anti-psychotic drugs – almost certainly contra-indicated in pregnancy – did nothing to suppress the daily horror of my existence during that time, but the idea that I might be physically ill (in some way that was exacerbated by pregnancy) was dismissed. I found myself begging for a Caesarean section at 28 weeks pregnant, longing for the misery to end. It was refused. My last child was miraculously born healthy at 41 weeks – thanks to the support of my family, midwife and a Community Psychiatric Nurse – and I now know that many hypopituitary mothers lose their babies long before that late stage.
My memory of my son’s early years is dim and incomplete, thanks to the antidepressants which were deemed to be necessary for my continued existence. With a supportive GP on my side I attended clinic after clinic across four different hospitals, each time being told that I was mentally not physically ill. One doctor told me that people in Belsen didn’t get fat and that if I wanted to lose weight and be less exhausted I should stop eating. When reminded that I was fully breastfeeding a six-month-old baby and therefore unable to resort to starving myself, he shrugged and remarked that that was my problem and not his. Another doctor at a different hospital used my appointment there to sell the bariatric surgery that he undertook in his private clinic. Yet another insulted me and spoke over my head to my then-husband, suggesting I be ‘suitably medicated’ so that I would ‘stop making such a fuss’.
I researched my symptoms avidly, spending hours on the net, and initially suspected that I might have Cushing’s disease, another form of pituitary dysfunction. The next doctor I saw suspected the same thing, and noted that the endocrinologist who had seen me during my last pregnancy, when my levels of the active thyroid hormone T3 dropped to almost zero, had suspected the same thing and had begun testing me accordingly. He had retired, however, leaving me in the hands of the consultant who clearly believed that fat people belonged in concentration camps. Similarly, this latest understanding doctor went on maternity leave, and the registrar who saw me in her absence was all-too-quick to condemn me as greedy and lazy and very, very stupid. When I told him that I had once been a runner, he laughed.
Somehow – and to this day I don’t really know quite how – I continued to fight. I weaned myself off the antidepressants, knowing in my heart that they were simply numbing me to the wretchedness that had become characteristic of my life, and I complained about the shabby, shoddy manner in which I had been treated. The breakthrough, when it came, seemed almost inconsequential and yet I very clearly remember walking down the hill from my GP’s surgery to my house, clutching a small piece of paper with my latest thyroid function test results written upon it. All three of my thyroid hormones were low, an anomaly since one – TSH – should rise if the other two – T3 and T4 – are low. I remember wondering how that might be possible. I remember the search term I used to try and find out. I remember seeing the word ‘hypopituitarism’ in the results. And I remember reading and reading, tears pouring down my face unhindered, with one thought and one thought only running through my brain: ‘I know what’s wrong with me.’
It all changed from there, although my battle, which ultimately involved two MPs, my GP and practice nurse, a psychiatrist and a huge amount of correspondence, did not end as quickly as I would have hoped. After yet another failed plea to yet another NHS consultant, I sought the opinion of a private expert, whose services were paid for by my father. He agreed with me that pituitary dysfunction had to be ruled out.
My care transferred to a different hospital, I then endured a variety of dynamic blood tests during which substances were introduced via IV cannula to challenge my brain to respond. It didn’t, but the tests themselves made me unwell and distressed.
When told of my results, I sobbed incoherently for the best part of three-quarters of an hour in my latest consultant’s office. ‘It’s alright,’ he soothed. ‘We can deal with this.’ What he didn’t understand was that I was crying from sheer relief, not from fear or distress. I was glad to know that I had hypopituitarism. I wasn’t crazy after all, nor a liar, nor a hypochondriac. I had been right all along.
Confirmation of my results was then sought by means of an insulin tolerance test, during which my blood sugar was lowered to dangerously low levels to see if my pituitary would respond. It tried, but the test was compromised by the fact that my known resistance to insulin was not factored into the analysis of the result. Referred to yet another hospital, I was told that my results overall were inconclusive and I once again had to plead for the chance to undergo a third type of test. At first, this last chance at diagnosis was also denied me until, in frustration, desperation and despair, I lifted the leg of my trousers and showed the consultant my leg muscle tone.
‘I was a runner,’ I sobbed. ‘I’m not lazy, or greedy, or stupid. I’m not delusional. If I’m depressed it’s because I’m ill; I’m not ill because I’m depressed. You are my last hope. Please don’t ignore me.’
I didn’t know, then, that this consultant was also a runner. My plea was heard. The next time that he saw me, my weight had dropped dramatically and I was clearly very unwell, to the point that he sought to admit me to hospital (only no bed could be found for me). I later went on to have that final dynamic test and to be formally diagnosed with Adult Growth Hormone Deficiency, an element of hypopituitarism. It is likely that I am also ACTH-deficient – which means my adrenal glands are not stimulated to produce sufficient cortisol – but not yet to the point where I need exogenous steroid replacement. I’m fairly sure that time will come, but who knows? Obviously, my thyroid deficiency is now known to be secondary to my pituitary disease, rather than a primary illness, and all my weird and wonderful symptoms can now be united under a common cause – my malfunctioning pituitary gland; my broken brain.
I’m a runner again. It’s hard, but it helps me to stay well, probably because it stimulates my brain to produce what ACTH it can. My quality of life is not wonderful but, with replacement T3 and T4, HRT, a supplement regimen that I designed for myself after extensive reading and, of course, the growth hormone that I inject each night, it is a great deal better than it used to be. Steady doses of replacement hormones can never properly replicate the responsive, reactive hormone-release of a healthy pituitary but it’s certainly better than going without. I cannot remember how it feels to feel normal and healthy and there are yet days when I feel I cannot carry on.
There are also days when I am amazingly proud that I have.
Joanna Lane writes: You can follow Katie Hughes’ continuing story in her blog