Tuesday, May 05, 2015

Pituitary Problems - or, how I learned to chillax about stuff

About last October 2014, I began to experience really debilitating fatigue. I couldn't understand it, I wasn't ill, or so I thought, just a long-standing sinus problem that wouldn't go away.

I had been feeling that same fatigue previously, in February 2014 – but I was doing a year-long post-graduate course in Education, working 19 hours a week in teaching and doing the usual mother stuff, so I put it down to that. I remember going to see a herbalist in Meath, who prescribed me a tonic, reckoning that my adrenal system needed some support. That tonic did seem to perk me up and I hobbled through the rest of the academic year, having some time off in August and picking myself up a bit.

At the same time, I noticed that I just couldn't stomach alcohol any more – I mean even a pint seemed to make me feel more than woozy, so I basically avoided drinking. I also seemed to start avoiding most social situations – Christmas, anything with friends: I just couldn't cope with anything beyond a working day.

Then finally my menstrual cycle ground to a halt in October. I waited until the end of November to see if it’d restart and when it didn't, I visited the doctor.

She sent me for blood tests to see what was lacking, with the mild warning that it could well be the onset of menopause. However, the tests revealed that I had a high prolactin level. She then requested an MRI scan to check out my pituitary, as she suspected I might have a pituitary adenoma.

She was right.

Just before Christmas, I was then referred on to a neuro-surgeon to see what he thought. He walked me through the MRI images: a 2cm tumour, and prescribed cabergoline, a dopamine agonist, to help suppress the prolactin, and possibly shrink the tumour. But he advised me to see an endocrinologist to see what hormones the pituitary was not making, as it is common for pituitary tumours to suppress normal pituitary function. He wasn't going in there, until the endocrinologist had established what function the pituitary did still have.

I now know more than is healthy to know about this tiny pea-sized master-gland located just beneath the brain, about 2 inches directly back from the bridge of the nose. It governs the release of ACTH, which tells your kidneys to make cortisol (and other hormones), as well as human growth hormone, which maintains normal cell function and has implications for the liver (hence the aversion to alcohol), as well as TSH, which stimulates the thyroid gland in the neck, not to mention all other hormones to do with sexual function and reproduction.

When these are governed normally by the pituitary, you don’t notice. You just have a normal quality of life. When these are suppressed, well, let’s say your quality of life ebbs away, drip by drip. It’s insidious and you really don’t notice it, except as a gradual withdrawal of living: fatigue, disinterest and just paring back to basic life functions. I hadn't been writing for a while, but at this stage I wasn't even interested. I had no interest in books either. I seemed to have a complete sense of humour failure too.

The special test that I needed came up towards the end of February. I underwent an Insulin Tolerance Test. In this, I came fasting to the hospital. They inserted a cannula to withdraw blood at regular intervals and then injected me with insulin. This is what is called a provocative test: basically the equivalent of inducing hypoglycaemia in a diabetic patient.

You don’t feel much discomfort, you just feel a little sweaty like you’re going to faint. The nice part is the Lucozade and biscuits you eat once you've achieved a low enough blood sugar count. The test also provokes the pituitary gland to release ACTH and growth hormone, a normal bodily response to an invoked stress. About a month later, in March 2015, I headed back to receive the results. I was still feeling very much under the weather, in fact, I was even worse than I had been before Christmas, but I now found out why.

My body wasn't releasing enough ACTH to stimulate normal cortisol production: basically I was only producing about a 1/3 of what I needed for normal daily function. So the endocrinologist said I needed to replace this with hydrocortisone. In other words, steroids. I have to take these every day, in the morning and early afternoon, to mimic the body’s normal pulses of these. If I am ill or vomiting, I have to double the dose. If I can’t keep them down, I would have to go to hospital to get an injection.

That was a shock in and of itself, but the next shock was to find out that I wasn't producing enough growth hormone. My numbers showed to be only 10% of what I should be producing. This hormone regulates cell function, liver function and without it, your cholesterol levels rise (something I hadn't got checked in yonks anyway), and your body fat rises. I had noticed my upper arms and tummy getting extra flab, but I had just put this down to getting older. It also effects your stamina and ability to exercise. Both of which had lately just had me flummoxed – I couldn't walk up the hill in Carlingford (a steep one, but a great one to get your heart going) any more, and just found it so hard to get from A-B in class – I’d come home wiped out from teaching most days, but lately I was wiped out after just driving the hour it took to get to work, never mind trying to get through a 5 hour class.

My eyesight doesn't seem to be as good as it used to be either. Sitting looking at a laptop or on my iPhone has a tendency to make my eyes feel sore after a while. This could be down to the tumour too, as where they develop they can press on the optic chasm: where the nerves from the eyeballs go back into the brain. As a tumour develops it can press on the nerves causing vision problems. I probably need to be assessed for this too.

The stage I am at now, is waiting to see. I am on growth hormone therapy and steroids – and could possibly remain on them for the rest of my life. The tumour itself has been scanned since, just last week, late April. And it doesn’t seem to be responding to the cabergoline, which I take every week – it’s more or less the same size. Whether it will need to be removed is something I’ll find out down the line: I've to wait and see how I stabilise on the additional drugs. Since beginning the extra drug therapy I am seeing minor improvements in stamina, but it doesn't take much to tire me out. I can manage a morning, but I get tired in the afternoon easily. Needless to say, I'm not at work – I haven’t been able to go, since the March visit to the endocrinologist.

I found that once I started the steroids I was all over the place, as I was when I started the growth hormone therapy. Four weeks in, things are starting to level off, but the advice I've been given is that it will take a long time to get back to normal – possibly six months to a year. I have a lovely app to help remind me to take everything, as there’s so much to take at different times I’d forget, if it was left up to me!

To be honest, this is the first time in a long while I've managed to type anything of substance. But it is a sign that something is coming back and at the very least the tumour I have is unlikely to be malignant. Reasons to be cheerful – 1, 2, 3.

4 comments:

Nadia Williams said...

What a challenge! On top of all that you're a mom, too, a fulltime job in itself!

Take care of yourself, and best wishes for recovery.

Alex said...

Wow, harrowing to see it all laid out like this. Glad to see you putting pen to paper again!

June Caldwell said...

Crikey Barbara, this is hell on a stick to go through and I know how busy,active and interested you always are, in everything, so I'm sorry you've had a lull. Here's hoping it's all starting to come under control and that medicine is doing its worthy job (fuck the hippies who think it's not needed, at times like this noting but pharma-therapy will work) and you are back on the road to recovery, health and brilliance. And you are brilliant by the way, one of the strongest women I've ever met and a super poet. Stay strong. J x

Debbie Seton said...

Holy crap batman - that is SO pants! I had no idea you were going through all that and, apparently nor did you :-o

I've no doubt that things will get better now that you know what you're up against - even if it is a bit slower than we'd all like. You are the original super woman, so I suspect that you just tired out some stuff before the rest of us.

Ian Dury would tell you to take "The juice of a carrot, the smile of a parrot; A little drop of claret, anything that rocks" and he might not be far wrong. What I'll tell you is to keep at it and take huge amounts of care of yourself. It would also maybe help if you did a bit of regular writing to help with the old morale - and keep us in the loop on how things are going. With much love xxx