Mike's Story

My Story

The bulk of this was written some years ago. A lot has changed since I wrote this, most notably, my tumour grew back. I had another operation and I heard the words,

" Some people are never cured"

 

It's life Jim......but not as we knew it!!

 

A few years ago after a period of undefined illness, I was diagnosed as having a rare condition called Acromegaly. In retrospect, I can now see all of the symptoms pointing to Acromegaly; claustrophobia, painful hands and arms, excessive sweating, headaches, tunnel vision, increasing shoe size and many other little things that were making life difficult for me. I know now that this condition, tumour, had been growing in the centre of my head for around ten years before diagnosis. And even then the diagnosis was an accident!

Around six years prior to that "accident", I was having a collection of cysts examined by ultrasound at Arbroath infirmary. The young doctor carrying out the examination was - in hindsight - asking all the right questions. He knew, or at the very least suspected, that I had Acromegaly or another related problem.

That information was, as far as I am aware, never passed on to either the specialist in Arbroath or to my GP. The specialist should have been able to spot it for himself, my GP probably not. My GP in fact did not have a clue and for several years he allowed his bigoted and arrogant nature to brand me as something of a hypochondriac. At one point, when my head felt like it was exploding, he basically told me that I probably had toothache, should go and see a dentist and stop bothering him.

If I sound a little bitter here it is because I am. I have since met second year medical students who could diagnose Acromegaly by listening to my voice and looking at my face, as the young doctor had in Arbroath more than ten years ago.

In the end it was not even my own doctor who referred me to the orthopedic specialist who finally recognised that there was indeed a problem. It's bad news when you have to sneak behind your own doctor's back but it proved to be wisest choice I made.
I had been complaining about the pains and swelling in my hands since 1988. I finally got a referral in Nov 1997. That doctor sent me to see a vascular specialist at Ninewells in Dundee and she spotted Acromegaly the minute I walked through the door

And so we come to the reasoning behind the production of these pages. In the two years following my diagnosis and subsequent Pituitary removal, I was lost. I did not know what was going on or how to deal with the loss of my hormone regulator. Eventually I discovered the internet and it all began to become a little clearer as I sought out information from around the globe.

One thing that struck me though, was the lack of personal insight. There was lots of info on Gh levels and optimum drug therapies but very little about how that actually feels or what it's going to feel like in ten years time when the radiotherapy has run it's course.

Basically this is the scrapbook diary and information portal of a man with Acromegaly. I hope that it helps somewhere down the line. I also hope that this can become a place where other sufferers can have their iown thoughts and feelings published. We want to hear from anyone with pituitary conditions. Tell your story here. Let the world know how you feel.  « Contact us »

We also have a self help Forum that is dedicated to just about anything you fancy. If you have any questions or comments to make then please use the forum for this. That way everyone can benefit from any information to be gained.

A Patient Story.

Today, well today I feel as weak as a kitten, in fact, I think a kitten would have more strength.
Tomorrow? Tomorrow, I could be buzzing around, catching up on all my delayed tasks. Such are the ways of hormones.
Acromegaly starts with a, normally, benign tumour on the pituitary gland. This tumour goes on to produce an excess of growth hormone. In my own case the count was around 50. It should have been 5!
It took me years to persuade the medical profession, myself, my employers and the DSS that something was amiss with my health. Everyone seemed to think that I was lying to them. Then, one day I saw the right doctor and within a couple of weeks I was being wheeled into an MRI scanner for confirmation of the worst and within a couple of months I was sitting in hospital waiting for the neurosurgeon to remove a rather large tumour from the centre of my head. Wow!
I felt relieved, I felt angry, I felt scared and I felt totally alone. Relieved because at least now I knew what was wrong. Angry because of the years of doubt. Scared because of the operation and alone because, well because I thought I was.
Now, three years on, most of the time I don't know if I'm better or not.
My tumour has gone, my GH count is down to 5 and my face and skin have regained some youthfulness. So what's the problem?

There is no doubt that my tumour had to come out but along with it came the plunger for my hormone injector.
Perhaps I should explain.
When something unexpected happens to our bodies, i.e. stress, our brain recognises this and sends a chemical message to the hypothalamus. These signals are interpreted in the hypothalamus, which then tells the pituitary gland to produce hormones of the correct amount and type to help us to cope. Thus our bodies deal with their own maintenance.
Well I don't have a pituitary gland any more and so any messages from the hypothalamus fall on deaf ears. The answer to that?

Hormone Replacement Therapy
I currently use the following drugs:

• Hydrocortisone
• Thyroxin
• Desmopressin
• Testosterone(patches)
• Lanreotide (injection every two weeks)
• I also use Atenolol and Simvastatin for related heart problems.

Moving On

 

The orange fingers were creeping up the river to touch the bridge. Their glancing feel induced in the bridge a bright golden glow that turned the ever increasing traffic into neatly wrapped sweets, sliding, conveyor like, to be diverted at the end toward their respective packaging points.
No I'm not going mad. This was the image I got as I looked from the hospital ward on the morning of my pituitary removal.

It was a bright spring morning. Friday the 13th of March to be precise. 6am, Ward 20 of the Dundee Royal Infirmary. This was the view I got as I looked down from the hill, past the college and across the town to the bridge coming across the water from Fife and beyond.
To be honest I was considering "legging it", getting the next bus home and chancing my life to fate. This day was too nice to die.

I was afraid, I freely admit that. I knew that my tumour had to come out but I also knew that this was major surgery, with major risks. I was not altogether sure that sometime, later today, I would not be getting wheeled across the car park to Pathology.
But I was prepared, I was ready to face my fate. What I was not, at that time, prepared for was the difference this day was going to make on the rest of my life.

"Squeeze my finger, tickle my bum, c'mon wake up it's time for some fun"
I think that is what he said anyway as he came toward me from out of the deep blackness.
Then it was,
"tickled tummy, your names the one. Today's the day you go out to play"
After a few more attempts it became a little clearer,
"Squeeze my finger. What is your name? What day is it? Why are you here?"

The darkness slowly melted away and I became aware of the tubes tugging at various parts of my body and I had a finger with a laser beam in it. I became aware of people fussing around my bed and I could hear the machine that goes Beep! Beep!
"Not Pathology then?"

I can only describe my stay in hospital as an experience. I had a wicked headache on the Sunday but apart from that I felt fantastic. I think that the big doses of steroids they were giving me had some kind of sedatory effect. I was more relaxed than I had been for many years. I was enjoying hospital food!! All of the symptoms which had become a part of my life and even some that I did not know were symptoms, disappeared overnight. There was no doubt that they had got to the root of the problem.

Thanks guys!
The entire team in ward twenty was perfect for their task. There was enough of every element, humour, professionalism and insanity to make it a functional force appreciated by all of the patients. I just hope, for the sake of Tayside patients, that this team is still together. I rather doubt it. Pity!

Eventually they got sick of me and threw me out. Told me to go home. Oh dear! Now I would have to start getting to grips with my new and improved life.

Steroids Forever

It took a few days for me to come down from my operation, even after I got home. The steroids were wearing off and I was getting toward a level which is considered average. I think it was then that the reality of the situation began to sink in.

Normally our bodies are very finely tuned. Everything is produced in the correct quantities to balance the system. Not so after pituitary removal. All of the hormones previously produced by the pituitary need to be replaced. But it goes a bit further than that.

The steroid hydrocortisone is produced in the Adrenal Cortex (The outer layer of the Adrenal Gland) and is stimulated by the hormone ACTH secreted from the pituitary.

This is how Encarta describes it:

Hydrocortisone Hydrocortisone, also cortisol, common names for 17-hydroxy-corticosterone, the principal hormone secreted by the outer layer, or cortex, of the adrenal gland. Hydrocortisone affects the metabolism of carbohydrate, protein, and fat; the maturation of white blood cells; the retention of salt and water in the body; the activity of the nervous system; and the regulation of blood pressure. Secretion of hydrocortisone from the adrenal cortex is stimulated by the pituitary hormone ACTH. Because of their widespread effects, hydrocortisone and related compounds, called corticosteroids, or corticoids, are employed for many medical purposes. They are used to treat a deficiency of adrenal cortical hormones, a condition called congenital adrenal hyperplasia, rheumatoid disease that is not helped by milder drugs, and to counter severe non-infectious inflammations. Corticosteroids suppress the immune response, so they are used to increase acceptance of transplants Transplantation, Medical. Other conditions for which they are helpful are asthma, collagen diseases, and eye inflammations. Because corticosteroids affect so many body processes, they must be used carefully. Corticosteroids dispose persons to infection and can lead to swelling of the face and limbs, muscle weakness, weight gain, high blood pressure, and diabetes. Another naturally occurring corticosteroid hormone, called cortisone, was the first corticosteroid to be isolated, in 1935. It was synthesized in 1944 and subsequently became available for widespread medical use. Cortisone is rapidly converted to hydrocortisone in the body. Synthetic corticosteroids with more specific activity have now been made and are preferred in many situations. "Hydrocortisone," Microsoft® Encarta® Online Encyclopedia 2001 http://encarta.msn.com © 1997-2001 Microsoft Corporation. All rights reserved.

 

A fuller description and some advice is available at Tayendoweb.
A printable version of their Hydrocortisone page is available HERE

Prior to my diagnosis I knew nothing at all about steroids. I always assumed that it was a fairly benign substance that somehow increased your muscle power. I understand now though.

These are very powerful drugs indeed and it is they, almost alone, that span the bridge between life and death for me. If I had to go a couple of days without steroids I would be quite seriously ill indeed. Probably requiring hospital treatment. And I can feel it every day, twice a day. And with every runny nose.

In day to day living, the mornings are probably the worst time for me. I take my tablets (20mg) with my first cup of coffee and then I have to sit back for about an hour before I am fit enough to get up and at em. It's the steroids that give me that strength. At around three o'clock in the afternoon I can feel myself winding down to my next tablet (10mg) at around half past four. That keeps me going until bedtime at 11 or 12.

Every day is the same unless something happens to change the routine. But there are many things that can change a day. Everything from stress to illness can and does have a significant effect on the patient.

At this present time I am getting more than my fair share of stress from my local housing office.This has been having a significant effect on my health. It is very hard to describe what stress does to me now. It is almost as if the steroid is used up by the stress and so less is left for day to day body management. I feel, not unwell, but more tired, weaker, less able to get on with things and my concentration can be affected as well. All of this seems to lead to more stress and the circle just keeps going on and on.

I've learned to back off a bit from stress. To take myself out of the circle. Instead of writing that angry letter I will go and sit in the garden watch the Blackbirds pulling at worms in the sunshine. This kind of thing seems to calm my mind and allows the steroid to concentrate on the more important issues. I guess that extra steroids would help but I like to save the extras for more serious things, like catching a cold.

Acromaniacs Log

The Internet provides us with a large database of information on pituitary disorders but most of these come from hospitals, universities and charitable trusts. Whilst this information is "good to know", It does not give the type of information that I, as an individual, need.
When doctors speak about "optimal" or "recommended" hormone levels, what should be added at the end is, "on average".
Every man is an island. Some days the water laps gently about his feet, calm and clear. Other days are spent trying to shelter from the wind and rain that is threatening to rip out the palms and drown us under a tidal wave.
AAAARRRRGGGGHHHH!!!

Under normal circumstances, our bodies deal with varying conditions by altering our hormone production. Which, in turn, speeds us up or slows us down, or just levels us out so that we can get on with our daily lives.

Enter Acromegaly, hormone replacement and hell!!
I was always a bit mental prior to my diagnosis but now, well now I am more "off my head" than I have ever been.

Day one, full of beans, the sun is shining and all is well with the world.
Day two, feel like shit, everyone's a bastard and I'm living in the toilet.
Day three, Melancholy blues!
Day four, hi-ho, hi-ho, it's off to work we go.
Day five,?????
Ad-infinitum....

And no-one can see the turmoil, understand the moods or tell us what to do to keep control of the day. It's a very lonely battle.

I accept the challenge, no option, but sometimes I just wish the world would leave me alone and let me get on with it. At this present time I do not work, mostly because I am not fit enough to do the work I was trained to do. OK, on day one and day four I could manage fine, but on days two and five, I am liable to, fall out with the boss, get fired for peeing too much or run out of the place screaming blue murder.
So I sit here most of the time trying to teach myself the ways of the web in the hope that my future will be a little easier and I will be able to provide for my family without the stress of having to take my Acromegaly to work.

Getting Better

My latest test results had my consultant all but discharging me.Woo!Hoo! I'm almost cured! But wait a minute, why do I still feel so bad?

I don't know what to do now! Do I get a job? What kind of job? I served my time as a fitter and I've had jobs as a fabricator and a welder. I've worked on production lines, I've washed piles of dishes in hot, humid kitchens. I've stood with my feet in ice cutting wet neeps in draughty barns. I've crawled on my hands and knees across rocky fields picking strawberries at 4pence a pound. I've picked tatties till the pain went away, allowing me to enjoy the days out. I've chauffeured the rich, hell, I've even been on a pub crawl with a millionaire and I've groveled before women who said I should call them Ma'am

Well I'm just not fit for any of that shit any more.

I am more tired than I have ever been, more confused than I've been for a long time and I generally feel like my life's not my own. Of course it isn't any more is it? My, once pristine, state of the art volume control is now just a loose knob that refuses to settle in the right place for comfort.

But my family needs some stuff now. I've been unemployed for a few years and the finances are, well, they are completely fucked at the moment. I never have two pennies to rub together. Sometimes we do without food so the kids can eat. It sucks big time and I really need to do something about it but I don't know what.