How to Read this Acromegaly Diary

Big nose, big lips, puffy face. That's me!

Each new diary entry appears near the top of the page, so to read older postings, you’ll need to scroll to the bottom of the page and work your way upwards. That’s how blogs work apparently. On most of the postings you can add comments, and it would be good to hear from you.

Where to start? Start at the beginning: Not an Ugly Sister but An Ugly Brother (October 12th 2008) or click October 2008 under “Archives” on the right.

Acromegaly Diary 2011 in review

The WordPress.com stats helper monkeys prepared a 2011 annual report for this Acromegaly Diary. That’s jolly nice of them.

I wish you all the best of health! Trys

Here’s an excerpt:

The concert hall at the Syndey Opera House holds 2,700 people. This blog was viewed about 16,000 times in 2011. If it were a concert at Sydney Opera House, it would take about 6 sold-out performances for that many people to see it.

Click here to see the complete report.

Cycling over 60 miles for charity (ouch) – please help

Wow, that's longer than I thought.

The Endocrinology department that I go to is at The Christie in Manchester (UK).

This coming Sunday (10th July) they are holding a Christie Manchester to Blackpool Bike Ride. That’s over 60 miles.

Anyhow, I’m going to have a go at doing it. Silly me. It’s going to hurt! I won’t be able to sit down for a week I’m sure.

Anyhow. If you’d like to follow my progress, and push me along with your support, then please visit my page for my bit in the event at www.justgiving.com/trys/

Just over a year ago I had my surgery to remove a macroadenoma, so I really want to support The Christie in this.

It’s quite amazing the work of the endocrinlogists, and the research they do!

Thank you.

Trys

Pauline in the Great Manchester Run 2011

Amazing today to see Pauline of the reception at Christie Endocrine Department (where I was treated and now have my checkups) in the Great Manchester Run 2011. What a girl! Well done Pauline!

Pauline on the Great Manchester Run 2011. Go girl go!

1st Year Anniversary of Trans-sphenoidal Surgery for Acromegaly

Well today is the first anniversary of my surgery for Acromegaly that I had at Hope Hospital (Salford Royal Hospital) in Manchester (UK).

It’s hard to believe it’s been a year. It seems so recent in a way to some extents, but I’ve really been enjoying things.

I’m basically a lot more “chilled out” that I have been for a long long time. At the same as being “chilled out”, I’m getting more done too. Things are going very well with me at work, and my wife and I are planning on doing some home improvements too. The holiday dates have been put in the calendar and so we have all to look forward to.

A bonus of all this is that if I ever wanted to be a stand-up comic I’d probably have enough material (in making fun at myself) for at least thirty minutes. Having said that, the stage of life is just one big stand up. The trick is to keep everyone around you happy and to stay standing as long as you can!

It’s Official – ‘Cured’ of Acromegaly

Last week I went for a follow-up appointment to discuss tests and an MRI scan I’d had on September 17th (some seven months after surgery).

The OGTT test showed suppression of GH to less than the sensitivity of the assay (<0.3 ug/ml), and my IGF-1 was bang in normal range at 180 ug/ml. The MRI scan showed a clearly distinct healthy stalk to the pituitary gland, no compression of the optic nerve. There was a little material below the pituitary fossa, which is down to the packing used to seal up the little hole just below the pituitary. My other blood test values are normal too. The professor was delighted, and indeed so were we.

So after that lot, I’ve got wonderful news: I’m officially totally in remission (or ‘cured’) of acromegaly.

The test criteria are so strict, this essentially means that this is in all likelihood the end of my difficulties with acromegaly. It’s not likely to recur, so I can move on now and get on in improving my general health, and grab life by it’s horns once again, and hopefully “make a difference” in some way to help others. It’s the combination of tests, these low limits, and the timing that gives this level of assurance that I’ve been so very much been waiting for.

My wife and I enjoyed a bottle of champagne that night to celebrate, as it is reason indeed to be incredibly delighted.

On Saturday, I celebrated in my own little way by cycling on my new bike from Warland (on the way to Todmorden) to Manchester Picadilli. It was a cycle of some twenty miles, taking about two hours. Ironically there were people collecting for The Christie, so I told one of them that what they were collecting for was indeed very worthwhile, as indeed I was one of their patients who had just received the news of my ‘cure’.  If you’d like to donate to Christies: http://www.christies.org/donate/

Indeed, one of my inspirations in starting this blog in the first place was reading one by a lad called Jason who has acromegaly. He mentioned his cycling in his blog, and I was amazed at the time, that despite his condition he was doing so well and even mountain biking. Hopefully I can follow in his (rather large) footsteps!

Thank you to everybody who has helped me in this two year journey, you all know who you are.

I especially wish to thank everyone who prayed for me, my wife, my family, especially Carys (my sister for spotting my condition), Dr Simon de Vial (my great GP who took my big shoes seriously), Susannah Rowles (my first endocrinologist who established the diagnosis, and went the extra mile including answering my many questions),   Sister Bernadette James (who saw my bottom regularly every month for my injections), Professor Peter Trainer (my brilliant red-socked endocrinologist, who has had to put up with my seemingly endless questions and answered each one with cheerful assurance), Kanna Gnanalingham (my steady-handed neurosurgeon, and the proud owner of one of my funny T-shirts and for having an amazing Scrabble-beating surname), Margaret Roberts (my very patient Acromegaly specialist who’s a real gem), Steve McGlynn (who raised my spirits when I was a medical guinea pig, along with Vinny), Dr Pravine Partha (for his very caring manner in keeping me calm during the rougher parts of my recovery), and all the nurses and support staff at The Christie, Salford Royal Hospital. Finally, and Minden Family Practice. I wish to thank you, my reader, for reading this! Phew!

The majority of us diagnosed have a ‘biochemical cure’ with treatment. So, if you have recently been diagnosed with acromegaly, then take heart. As long as there is still faith, there is hope. Just don’t panic, take each test and procedure one step at a time. There is life after diagnosis! Whoohoo!!

IGF-1 Still in normal range

We have the results of the blood test back on 2 August (the six month mark after surgery)!

It’s still in normal range at 226 ug/ml. Phew!

Indeed, the normal range for the assay they use (for my age) is up to 267ug/ml from what I understand. It’s pretty much the same value as my blood test three months after surgery (at 220 ug/ml).  If the testing method has an error of around 5%, then measured differences in values of 10% are not very significant.

I’d be a bit happier if my IGF-1 value was a little lower. As it stands it’s possibly nudging into the upper end of the normal range. I’m glad I’m being so very well looked after.

I have a full “day curve” coming up next week, and an MRI scan, which will give a more complete picture of how I’m doing.

No Six Month Day Curve

I went into hospital today thinking that I’d be in for the day to have a “Day Curve” and an modified Oral Glucose Tolerance Test (for Growth Hormone). It’s almost exactly six months since my operation. I’d got a book to read, my MP3 player ready, and I’d fasted overnight.

It turned out that it was only an appointment for a catch-up with one of the doctors there. I didn’t learn anything new that I hadn’t already been told, and I’m not sure if I had any news either.

Silly me. They took a sample of blood anyhow, so from that they’ll be able to get my IGF-1 level.

I was told I should exercise more, and lose weight. Excellent advice, and one I will endeavour to heed.

Colonoscopy – My experience

A colonoscopy is a great opportunity to get to know your bathroom a lot better.

As I have acromegaly, I’m at greater risk of having polyps on my colon (large intestine). Colonic polyps are, in a way, little fleshy bits (like little ‘skin tags’ or overgrown spots) that grow inside the colon. Often these polyps don’t do very much, but they can lead on and become cancerous. So yesterday, I had a colonoscopy to see if I had any polyps or anything else wrong with my colon.

Three days before the procedure, I had to avoid high fibre foods.

The day before the procedure I had to take the laxative ‘Citrafleet’ (Sodium Picosulfate) to ‘prepare’ my bowel.

Armed with three packs of toilet paper (yes, ‘packs’, not rolls), I took the laxative, retreated to the toilet, and waited for my bottom to explode.

I was thankful to the inventor of the flushing toilet and even more so that I hadn’t indulged in a curry the previous night.

I was allowed have a limited amount of low residue non-fatty foods up until lunch time. Allowed (amongst other things) are boiled or poached eggs, white bread, and sieved soup.

Sieving minestrone soup is an experience. The stuff left behind really takes you back. That reminds me why I don’t like cider.

The laxative worked. Oh yes. The rumble and eruption was on par with an Icelandic volcano. A ‘no-walk zone’ of twenty paces around the bathroom resulted. The consultant had told me it would be like dynamite. I was not to be disappointed. Dynamite it was. I almost had to hold onto the seat.

In all fairness though, I had expected this, and amongst my armoury was plenty of toilet paper, and I’d put a book and a newspaper in the bathroom before I’d taken the first laxative. I’d also bought moist toilet tissues too. I took the second laxative at four o’clock in the afternoon, and just had a bowl of jelly after that (jelly was allowed!).

So the day of the colonoscopy arrived. The procedure was explained to me by a nurse practitioner, and by the specialist (PF), consent forms completed. I dressed into a hospital gown, and went into the room for the procedure.

The room had a hospital trolley/bed, a great big computer monitor, and some apparatus on the other side. I guessed that was the ‘telescope’ or ‘endoscope’. I didn’t look at it too closely, just in case I scared myself! I had a cannula put into a vein of my right arm, and I was asked to roll onto my left side, and bend my legs with my knees up. I had a sheet covering my lower body to protect my modesty and I didn’t feel too self conscious or embarrassed . A tube with a sponge supplying oxygen was put just up my nostril. It smelt really ‘plasticky’. The specialist administered a painkiller and sedative using the cannula that he’d put in.

I was facing the screen, so I could see the view of the scope. The scope itself was obviously warmed to body temperature, and although a very strange disturbing sensation it did not physically hurt.

I could see the images on the screen, and quite soon I was more interested in what was on the screen than anything else. It was quite fascinating! It was like having my ‘head up my own arse’ (if you pardon the expression)! It was really well lit, I’m guessing the sun really does shine up there. It’s a strange land of very convoluted pinky-white tubing. The laxative had worked really well – I was quite impressed.

I had a little discomfort a couple of times, feeling like trapped wind, and the specialist stopped and administered more sedative or pain relief (I didn’t know which). The nurse was writing down the doses as he was giving them. On occasion he’d see something on the wall of the colon, then he’d squirt it with water, then it would go again. He explained that they were food particles. Now and again the image would go completely pink, and I expect that this was when he was ‘turning a corner’ in the colon (it has two or three bends).

Anyhow the specialist got right to the end of the colon, and then retracted and inspecting on the way back. If you’ve ever gone on a tour of an underground cavern, it’s always a shame when you get to the end, and have to turn back!

I was rolled on my back, and wheeled to the ward to recover, for them to keep their eye on me (and check my BP and O2) . I didn’t feel particularly sedated, and neither had I through the procedure.

The specialist explained that everything was normal. Excellent!!

I got changed, was given a small aftercare leaflet on the procedure, and my lovely wife took me home. They said that a responsible adult would have to keep an eye on me for the next 24h or so. My wife would have to do. (Only joking!).

So in summary: A colonoscopy is not half as bad as you might imagine. Many people are so well sedated they don’t even remember it. I found the view really interesting. It pays to plan ahead a little for the laxative day. Moist toilet tissue is great.

PS Apparently Thomas Crapper did not invent the flushing toilet, I was surprised to find. It’s the kind of fascinating detail to ponder after spending a day of your life on the porcelain throne.

PPS: The lighter side of a Colonoscopy: Billy Connolly, Homer Simpson, Robert Klein

OGTT Results after 4 months

Today I received the results of the Oral Glucose Tolerance Test (for Growth Hormone) and other blood tests that I had on 11 June 2010.

It’s still really good news!

My random fasting Growth Hormone (GH) was 0.4 ug/ml, and the Glucose in the OGTT suppressed my GH to 0.3 ug/ml. I wish in a way this suppression had been better, but it still “passes” as far as the new stricter classification of remission goes.

The great thing is that my Insulin-Like Growth Factor-1 (IGF-1) is a very normal 205 ug/ml (smack bang in the normal range for my age). It’s this IGF-1 value that paints the picture of what my GH is up to generally, so this is an excellent value!

Oh, happy day!

Photos after acromegaly surgery added

I’ve (finally) added my photos after my surgery for acromegaly:

(Click the links below to see them in the diary entries)

Four hours after surgery

The day after surgery

Hopefully the images will be of comfort or encouragement to those who are about to have their surgery, or if you or somebody that you love has just been diagnosed with a pituitary tumour.

Trys

No Residual Tumour!

Wow!!

I’d been a bit too eager to get my mitts on the radiology report for my MRI scan.

I’ve been told by the Professor that on examination of the MRI films, that I do not appear to have residual tumour after all! Whoohoo! Excellent news.

This conclusion has been come to by the Professor, the radiologist, and my surgeon. My surgeon and the professor came to that conclusion independently of each other also which gives me even more reassurance.

My surgeon also said that, by definition, as my Growth Hormone (GH) and Insulin-Like Growth Factor-1 (IGF-1) are normal then I cannot have a Growth Hormone secreting tumour. That makes sense.

I was incredibly grateful to my surgeon, and also to the Professor in taking the time to go through this with me, and to give me this most welcome, wonderful news. He really was very clear in the way he explained it, which was most reassuring.

As ever, I am overwhelmed by the excellent level of care I’ve received by the medical staff I have met.

Oral Glucose Tolerance Test

I had an Oral Glucose Tolerance Test (for Growth Hormone) today. I also had one back in 2008, and in the same week as my surgery.

Whenever we read about glucose tests, we tend to instantly think about diabetes. A very similar test is used to test insulin response, but in this case, the test is looking for my Growth Hormone (GH) response. Glucose should suppress GH production.

It’s been around four months since I had surgery, and this test is to try and establish if my pituitary gland is producing GH normally.

I had to fast overnight, which basically just means I had to skip breakfast, and got there for 8 o’clock in the morning. The hospital is lovely and quiet that time in the morning without too man of us patients making the place look untidy.

I had a little cannula put in my arm (I scored her as “10 out of 10″ for putting in the cannula, absolutely brilliant). I was given a drink of very very sugary water. It was like drinking a Kendal Mint Cake, except without the mint. After this, every thirty minutes for two hours, a small sample of blood was taken, using the cannula, so it was painless. I was finished by 10:30am, and I was given toast and jam, and a mug of coffee. Lovely.

While I was there I spoke to one of the doctors (PP) who was very enthusiastic, and also to the Acromegaly Specialist nurse (MR) who was wonderful and very reassuring.

I’ll probably get my results in just over a week.

MRI still shows residual tumour

I had an MRI scan two weeks ago, which is three months after my pituitary surgery for acromegaly.

Today, I rang up to get the results. The doctor told me that the MRI ‘showed enhancement’ of an area of 5.5 x 8.5 x 4.5 mm. ‘Enhancement’ on an MRI image is where certain cells (such as tumours) show up more opaque once the drug is administered.

Essentially, it would appear that despite all my hormone levels being measured in normal range and in ‘remission’, I still have residual tumour. Quite a lot, in fact. There are cases where there can be remission despite residual tumour.

It may be that the active portion of the tumour has been removed, and that the material that is ‘enhancing’ is made up of scar tissue or some non-functioning tumour. Who knows, eh?!

It’s not the best news I’ve had this week, but whilst it’s not worth worrying about because it won’t help one bit.

‘Cured’ of Acromegaly

Three months ago I had an operation to remove a benign tumour on my pituitary gland. The tumour was pumping out growth hormone, and so giving me the condition of Acromegaly.

Blood sample containers. Marvellous little things.

A few days after the operation I had some blood tests to determine if I was in “remission” or not. Basically it was to see if I had an elevation of Growth Hormone (GH) or not. The results indicated that it was likely that I was in remission from the values of GH alone. The results were very early, but research has shown that these early results are a good indicator of remission.

The real thing that causes growth isn’t directly GH, but rather IGF-1. In a previous posting I wrote about these IGF-1 values still being high at 325 ug/ml and a month later, 295 ug/ml. The figure we were looking for was a value of less than 267 ug/ml. The values appeared to be dropping though.

Two weeks ago I had a set of blood tests. This will be for three months after the operation. There are numerous medical papers that document that normalisation of IGF-1 at three months, and normal GH indicates remission from acromegaly. Remission is of course the closest thing to ‘cure’ in the land of tumours.

Today I got the results. IGF-1 was 220 ug/ml (well within normal range). Indeed, everything is in normal range. I’ve been ‘cured’ of acromegaly. Absolutely wonderful news! Whoohoo!

In Limbo Land

I’m a bit “in limbo”.

So I had transsphenoidal surgery for acromegaly some six and a half weeks ago (9th February 2010). I was very fortunate to have such a gifted surgeon.

My early post-operative tests (GH day curve, and GH OGTT) indicated that I was “in remission”. They use the words ‘remission’ as my condition involves a tumour (even though it’s a benign one), and cannot use ‘cure’, after all it could recur. Remission is a lovely sweet and welcome word in my ears though…

Remission and Recurrence

Searching for the words ‘remission’ and ‘recurrence’  is quite sobering at first reading, but it needs to be taken in the context of the drug developments available now to “biochemically control” the condition. As far as I can tell from the literature searches I’ve done, is that there can be a ‘recurrence’ of around 18% within a ten year period of persons in remission. I need to do further work on this, so please do check this for yourselves.

The better indicator of remission I get is when I have tests from three months after surgery.

If the tests are good then, then that will confirm remission.

My IGF-1 results were falling towards the reference range a week or two after surgery (325 ug/ml  then 295 ug/ml). My thought is, is it still dropping? (I need to get it under 270 ug/ml ).

I’m sure a lot of people get this feeling after surgery for a chronic illness. After all, I want to get better, I don’t want to give our families more worry, and I don’t want to put so much drain on the health professionals who could be treating others instead of me.

Drawing a Line

In a way, I thought that the surgery itself would draw a line under the whole thing, whether I had the results or not. It hasn’t though. The surgery has helped to close a big chapter, and I’m so glad I had it. I’m absolutely delighted, and I’d recommend it to anybody in the same situation.

Anyhow, I’ll carry on waiting until it’s the right time for the tests. I’ll be patient. I’ll be a patient.

Insulin Tolerance Test

Insulin Stress Test

I had an Insulin Tolerance Test (ITT) or rather an Insulin Stress Test today. As the test is quite intense on the heart, I had an ECG yesterday which was fine.

Insulin takes your blood sugar down, Crunchy Nut Cornflakes brings it back up again.

Since my transsphenoidal surgery for acromegaly I have been kept on Hydrocortisone just in case my little pituitary gland has been damaged at all. One of the hormones that could be damaged is ACTH, which in turn causes Cortisol to be produced by the adrenal glands. Without cortisol, we die. Sobering stuff. Gulp.

Anyhow, the test today is to determine if my pituitary is behaving properly by measuring my body’s production of cortisol to the ‘stress’ of very low blood sugar.

An injection of Insulin drives down the blood sugar within around twenty minutes.

The body normally keeps the blood sugar at around 5 mmol/L by producing Insulin or Glucagon depending on whether the level needs to go up or down. The only energy source that the brain can use is glucose as blood sugar. A sustained loss of blood sugar would result in the brain losing its energy supply which would result in a visit to the undertaker.

Insulin drives down blood sugar  <–> Glucagon drives up blood sugar

Anyhow, during the test they don’t want the inconvenience of killing you off so the test is very tightly controlled and you are kept under a very close watch and are not left on your own.

As the blood sugar drops to say below 3.7 nmol/L , the normal hormone responses are the production of glucagon, epinephrine, growth hormone.  The Glucagon production results in the body trying to recover the blood sugar (the liver gets working hard).

At a blood sugar of less than (say) 3.2 nmol/L, ACTH is produced in the pituitary gland, which in turn causes the adrenal glands to produce Cortisol. This starts a cascade of actions as a stress response – heart racing.

Bingo – this is what they are measuring for.

“Feels like five pints..”

As my blood sugar went down I just felt as if I’d had a drink. I did mention it “on the way down” with comments like “that feels like two pints”, and then it was “wow that feels like five pints”. At that stage, I was feeling quite merry, lots of sweat pouring off my face, and a hunger like a student on ‘pizza night’.

The nurse struggled taking blood from me at that point, and I had to make a fist in my arm to coax out a sample. My body was acting completely normally of course, it was constricting all the blood vessels in my extremities to conserve blood to my brain. It was certainly doing that.

As soon as that magic blood sugar level was reached, I was given a bowl of Crunchy Nut cornflakes, with lashings of milk and an incredibly sweet cup of coffee. I managed to wolf down three bowls of the lovely crunchy stuff, along with the sugary coffee. I normally don’t take sugar in my coffee, but I really wanted my sugar.

I found the whole experience absolutely fascinating, especially as everything was explained to me. I found the actual effects on my body quite astounding, I never realised how incredibly well controlled our bodies are by these hormones and steroids that float around our bloodstream.

My blood sugar carried going down, and then recovered over the next hour or so. Later, I had some lunch while I was there and then once they were happy I was fine I was sent on my way.

I was told that I could feel very weak in the next few hours, so it was best to eat something again quite soon. I went home by bus and tram (best not to drive). What a fascinating day!

EDITED: I had the results that my cortisol production was completely normal, so I could reduce and stop my Hydrocortisone tablets as a result. Whoohoo!

Michael Muir Died (Mike Muir)

I have been passed on some very sad news indeed, Michael Muir (Mike) lost his fight for life on Wednesday 17th February 2010. My sympathies go to his family and friends in the hope that they can in time be comforted by his memory.

Mike, as many of you will know had Acromegaly, later in November 2009 he was diagnosed with Pancreatic Cancer, which was also found to have already spread to his liver. Acromegaly makes us more susceptible to cancers, and Mike did ask if there could be a link with Pancreatic cancer specifically.

Posted on 15th November 2009, Mike wrote:

Last week I was diagnosed with pancreatic cancer. No escape I’m afraid, it’s already inoperable but I can’t help thinking yhat this is related to the Acromegaly and in particular to the way the gh interacts with the pancreas. Rare, yes but so is the position I’m already in.

Anyhow, off his site, www.homegroan.co.uk, his journey with Acromegaly, and his dealings with the medical fraternity and the social welfare system had been fraught with difficulties. Michael truly had a very difficult life with Acromegaly with all the associated difficulties of being unable to work, and suffering with no pituitary function following radiotherapy.

In his own words:

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.

Mike enjoyed web development and using the Linux operating system. He set up a number of websites. Some were personal projects, such as http://www.risingfree.com the internet radio station, which he set up as he said “Because I wanted to learn how to is the simple answer I suppose. I love being able to take a concept such as this and to bring it forth, from, what amounts to, nothing at all.”. He set up http://www.risingfree.co.uk/ a free business and community directory for Aberdeen and Angus, and similarly http://carnoustie-online.net for Carnoustie. He also set up a number of sites and installed scripts from his site www.northernwebservices.co.uk. He had commenced building up www.pituitary.me.uk to provide information about Pituitary conditions, and set up http://www.acromegaly.me.uk for acromegaly information.

Unfortunately I never had the privilege to meet Mike, but through his postings some of us will feel like we knew a small part of him, and for that I’m grateful for.

Trys

Acromegaly and whistling

I can whistle again!

I used to be able to whistle through my teeth some years back. I wasn’t particularly melodic, but whistle I did, and I was happy. Then, one day, probably (say) two or three years ago, I noticed I couldn’t any more. I could however whistle with my lips. I was even worse at whistling then, but again whistle I did.

One day, however, probably about 18 months ago, I noticed I couldn’t whistle at all. I know now of course that the reason was because my lips had grown with this condition of acromegaly, and my lower jaw has grown forward so my teeth don’t meet at the front any more.

Anyhow, some three weeks ago I had pituitary surgery on the tumour that caused the acromegaly (or rather is still causing it, I don’t know yet). The good news is today is that I discovered I can whistle (through my lips) again. I feel like a starling that’s got his cheep back – I’m delighted!

The soft-tissue of my lips is evidently starting to go back to how they were. Wow!

Heh, it’s not groundbreaking news, but I like it. As for ‘melody’ however, it will take more than neurosurgey to teach me a new tune. It’s something I can enjoy working on.

Emergency admission again

Friday felt like I was really starting to get back better again, and then on Saturday we went out for a day and had a lovely time. We went out for a meal that evening.

It’s probably worth noting that due to the acid reflux I was getting with the hydrocortsone, I was just having very simple and low salt meals. The meal that I had when we went out was predominantly all tandoori marinated (relatively salty) meat, and lots of it. I’m thinking here that I’d effectively tipped my Potassium/Sodium balance.

Two hours after the meal I was being taken by ambulance to the nearest Accident & Emergency again, this time also having being administered the emergency 100mg hydrocortisone injection. I was talking twice as quick as everybody else, everything had gone into fast-forward! Bizzare.

My blood pressure they tested was astronomical. Both the figures were in the 200′s. The hospital could not check my cortisol levels for three days. They also told us that during my previous admission to A&E on Tuesday that the Cortisol levels had not been measured then either and not available. This is contrary to what I was told on Tuesday, and so they could not determine the correct course of action to treat me. This was very frightening indeed. We transferred to another A&E department hospital where I had my pituitary operation.

I was discharged and brought home yesterday (Monday). That hospital very kindly provided me with free transport, for which I was very grateful for.

I had to return later to collect my medications (hydrocortisone).

Lifting a Collapsed Man

On leaving the hospital I saw a man collapsed on the ground with two women struggling getting him into a wheelchair. Instinctively, I went to help and lifted him into the wheelchair. I didn’t for a moment think twice. I knew as soon as I’d done it that I’d done something incredibly dangerous and stupid. I’d just lifted, effectively, a heavy off the ground only two weeks after a pituitary operation.

I felt unwell afterwards, my head feeling heavy, but my condition improved over the next hour or so, but we stayed within a few minutes of the hospital in a neighbouring retail park as a precaution. The sensation at the top of my nose has been ‘different’ since, without being able to quite pinpoint ‘what’ exactly. I didn’t have any nosebleed or leaks or funny sensations of things running down my throat. I think I might have got away with it this time.

Good Night’s Sleep

I had a good night sleep last night which made all the difference. I feel a bit dazed after the whole weekend, but I’m getting more “with it” as more hours pass.

I’m in Christie Hospital tomorrow (Wednesday), but the Cortisol day curve is posponed for now because of the most recent hospital admission. I’m looking forward to seeing them as they’re so very friendly, supportive and informative.

BP 159/92 (p 81)

Hydrocortisone

Deficiency after Pituitary Adenoma Surgery

Surgery of a pituitary tumour can result in the deficiency in a number of hormones (and factors) from the pituitary and the hypothalamus. This deficiency is often just temporary, although they can persist. Blood tests are carried out after surgery to determine these.

One particular hormone, ACTH, stimulates the adrenal glands (on the kidneys), which in turn produce Cortisol. Cortisol, and the effect it has is necessary for life.

To guard against the problems associated with this, tablets of hydrocortisone (which is effect is the soluble form of Cortisol) are given three times a day.

I have been given hydrocortisone as a precautionary measure following pituitary surgery last week.

Chronic Heartburn

I’ve had a few days of very bad chronic heartburn starting on Monday afternoon. All I wanted to do was lie down to rest my head due to a headache, but in doing so it made my chronic heartburn worse. It’s not like any heartburn I’ve had before – it felt like I was raw inside, and my stomach would gurgle and burp.

Gaviscon (a popular heartburn liquid in the UK) gave only very temporary relief. The Gaviscon would then make me feel thirsty, but on drinking water it just brought back the pain.

Accident and Emergency

On Tuesday I vomited quite prolifically about two hours after my tablet, and then twice later that evening.

After vomiting in the morning and feeling very unwell and very ‘heavy’ (and feeling very sleepy, very chronic heartburn) I called for an ambulance, which promptly took me to A&E. I explained (as well as I could) what procedure I’d had done and about the hydrocortisone. They ran blood tests on me they measured (amongst other things) cortisol which they said was fine. My ‘obs’ were fine too (blood pressure etc). As far as ‘Diabetes Insipidus’, they said if anything I wasn’t drinking enough.

Zombie

I was told that unless I was over seventy five years old they couldn’t arrange transport home for me. They pointed me in the direction of the pharmacy with a prescription of Omeprazole (2 x 20mg daily, for heartburn), and told me that I’d have to make my own way home, somehow. I just wanted to lie down, it didn’t matter where.

I wandered off very very slowly, much like a zombie, onto the snow covered paths in but a tee-shirt. I’m very short-sighted too, and without my glasses, everything was a complete blur and got lost twice getting there. It seemed to take forever, despite it being but a short walk.

I then made my way to the main entrance and again explaining that I had no money on me, no glasses, no coat and could somebody please take me home. They couldn’t help. I sat on one of the chairs by the front entrance and just wanted to cry, and yet I was so dazed I couldn’t do. Thankfully.

Despite having no money on me, I asked a helpful gentleman to call me a taxi. The taxi promptly arrived and the driver came in to collect me and take me home. I wasn’t sure if I had money at home or not but guessed that I might do, but at least he would know where I live to get money another time. I got home and wandered in slowly and I managed to pay the very patient taxi driver. Phew.

Purple Blemishes

Purple blemishes on my cheek (yellow 'colour cast' from lights). The one darker marking is one I've had from a very young age. The spots were more purple than red, but due to the lighting it doesn't quite show it. (16 Feb 2010 at 21:30)

That evening, after projectile vomiting (think of your favorite comedy sketch here), I left a message at The Christie and a doctor promptly phoned me back and put me at ease.

It was only after the phone call that my wife, in trying to clean what she thought was vomit on my face, found that I had marks on my right cheek. They were a dark purple colour, about six of them in all, each about 6-7mm in size. They’re were not raised at all.

Feeling Better

Today, Thursday, I feel a lot more “human”. I’ve still got purple pigments on my face.

Blood pressure at 8 o’clock this morning was 132/83, pulse 64. That’s pretty normal. I’m not on blood pressure tablets at the moment (although I was on three before surgery).

I had quite a good night’s sleep, although struggled dropping off (I took my last hydrocortisone tablet at 5pm). My heartburn is almost non-existent, and I just feel a little spaced-out and my balance isn’t great. Strangely too, bizarrely, I’m finding it more of an effort to focus on things close to me.

I’ve read the leaflet that comes with the hydrocortisone and it appears that some of these things are just side effects, such as the heartburn and purple blemishes.

On Wednesday next week I’m in for a series of blood tests to see if I need to continue Hydrocortsone or not.

Trys

Cured of Acromegaly?

Wow – what a headline – “Cured of Acromegaly?”, but in true sensational newspaper-type hype, it is alas but a headline. The word “Cured” should of course be “remission”. Any tumour or growth there is a chance that they will grow back in time.

Random Growth Hormone Day Curve

Anyhow, on Thursday I had blood tests to measure my Growth Hormone (GH) randomly over the day. Normal people produce very little GH during the day
(most of it is produced over night), with just a few pulses of GH due to events such as stress. Somebody with acromegaly will pump out GH through the day whilst their tumour keeps on producing it.

Result: Pass!

Oral Glucose Tolerance Test

On Friday I had an Oral Glucose Tolerance Test (OGTT). This involves having a glass of water with a measured amount of glucose in it, after fasting over night.
In a normal person any GH would be suppressed (go down) after the glucose drink. In a person with acromegaly the GH would remain the same, or paradoxically go up or some random response.

Result: Pass!

Not so Quick!

The results in my case have to be treated with some caution. The drug I was on to suppress my GH (octreotide) could still be in my system. I stopped taking it twenty days before the operation (and I stopped taking the long-acting ‘monthly’ version of the drug about three months before the operation).

Another bit of caution too is that I’m temporarily on a steroid/hormone called Hydrocortisone to cover me against an adrenal crisis after the operation. Research has shown that this suppresses GH in people with acromegaly. On Wednesday I was on 50/50/50mg HC (i.v.), on Thursday, 20/10/10mg HC, and on Friday I was on 10/5/5mg.

Beaming from Ear to Ear

The surgeon came himself (again, beaming from ear to ear) to give me the very promising good news, which initially appears that the surgery was a success and that against the criteria set shows remission. He emphasised caution though in regards to these results due to the octrotide that might be still in my system, and that I would have a follow-up at Christies in about six weeks time.

Unfortunately, despite me being such a zealot for data, I didn’t write down the figures of the results (or criteria) due to the sheer excitement. The surgeon did repeat the figures a few times to me, and I made a determined effort to remember them, but they flew out like moths from a cupboard. I do however remember thinking that there was a large margin between the values I had and the maximum values that were being tested against.

The great thing for a surgeon treating somebody with acromegaly is that they get great big handshakes off their patients! (KG – You’ll be using that line to amuse your staff now!).

Despite the caution of the results, I’m absolutely delighted, absolutely over the moon. Friday night I went home with my wife, and she was absolutely lovely.

The hospital “Immediate Discharge Summary” for me had the simple, but welcome words of: “GH results showed remission, so he was sent home“.

Last night (Saturday) I walked to the local Chinese takeaway to get us a banquet to celebrate.

So do I have remission from Acromegaly? Well we don’t quite know yet, but it’s looking rather promising!

Pituitary Operation – 2 days postoperative

Wow – hello everybody!

Photo taken day after transsphenoidal surgery for acromegaly. Now, when is the next beer festival?

It’s about 48 hours since I came round from surgery for ‘transspehenoidal resection of pituitary adeonoma’. That’s a way of saying that I’ve come round from surgery that involved going up my nose to remove a lump that was clinging onto the pituitary gland.

Pituitary Gland?

The pituitary gland is a baked-bean sized gland in normal people, and so when there’s a growth on it, the growth will tend to squash it a bit.

The pituitary gland (remember baked bean here) is in it’s very own little pocket of bone. In the same way that baked beans come it tins, then pitutary comes in its own special container.

Luckily enough this little pocket is accessible through the nostril, where they remove a tiny bit of bone away so they can access the lump and coax it out with surgical instruments.

Obviously it’s very highly specialised neurosurgery, like picking the lock of the back door through the letter box of the front door. It’s not in the realms of a Dremel drill, a drinking straw and a bottle of superglue.

So how am I now – 2 days later?

So after what might be considered ‘brain surgery’ (which isn’t very strictly true), and two days on I am very happy to report that I’m very much alive and kicking!

Anyhow, I’m here sat upright in a chair, fully dressed, with my little laptop fired up. I have no pain, and despite not really needing them today I’d taken a couple of paracetamol (that’s ‘acetaminophen’ to my friends across the pond!).

Red Socks

I was delighted to see my surgeon earlier (KG) when he came to visit me, with him beaming from ear to ear. He brought me the heartwarming message of “The man with the red socks passes on his good wishes” – he meant, of course, the Professor. It was a very welcome message indeed.

Am I ‘cured’?

The surgeon emphasized that we won’t know thechance of ‘remission’ (loosely, ‘cure’) until blood tests are carried out to see the levels of growth hormone in my system (that the lump [tumour] has been pumping out whilst hitching a ride on my pituitary gland).

I feel that I still have high levels of growth hormone in my system as my nose is oily, I have tingling in my hands at times and the eyes have been running. It could be early days, and it doesn’t dampen my optimism of being one day ‘biochemically controlled’ (with medication) and so continue the wonderful privilege and spectrum of life that we all share.

Thanks!

I wish to thank all the medical teams, in Fairfield Hospital (SR), Moorgate Family Practice (SDv), The Christie (MR, Prof, Fiona, Sharon & all), and of course all at Salford Royal (especially KG) where I am at the moment, to my sister for diagnosing me, my family for being there for me, my gorgeous wife for being such a fundamental support and having to put up with me!

My thanks to all that have prayed for me and that are still praying! Keep at it – get those knee-pads out if need be!

Pituitary Operation – 4 hours later..

Four hours after transsphenoidal surgery for acromegaly. No pain! Now what's on the menu?

Just arrived home after visiting Trys, and was pleased to find him browsing the Hospital menu.

The operation was expected to take about one hour but in the end, Trys was in surgery for about 3 hours however this could have been due to them trying to control the hypertension. Had a small nose bleed but otherwise the surgery seems to have gone to plan.

Mrs Trys : )

Transsphenoidal Surgery booked

Excellent news!

Lots of things have been happening lately, and I’ve only just got around to writing about it.

The big thing is that I’ve got a date of my transsphenoidal surgery that will hopefully improve my acromegaly, and possibly even “cure” me.

(I use the word “cure” in quotes, as the real term is remission.)

The surgery date I have is Tuesday 9th February 2009.

My wife and I met the surgeon. We were quite nervous to meet him, but he very soon put us at ease. He explained the procedure to us in detail and answered all our questions. He took an interest in how I was originally diagnosed and the symptoms I had at that time, and also took time to discuss the treatment that I’d been receiving up to this point. He’s a very nice chap, and I’m happy to put my life in his (steady) hands. Oh, and yes, they are very steady (my wife made a special point of looking!).

Uncontrolled Acromegaly on Sandostatin LAR

I’ve just rang the hospital to get the results of my last ‘Day Curve’ to find out what my Insulin-like Growth Factor 1 (IGF-1) level is.

Bad news. My acromegaly is not fully controlled by Sandostatin LAR.

It’s at a level of 538 mg/ml it should be less than about 290 mg/ml (age-adjusted) for me to be termed as ‘biochemically controlled’. It’s still a whole lot lower than my untreated level of 1244 mg/ml.

 This value is higher than three months ago when it was 499 mg/ml, after which my Sandostatin LAR dose was increased from 20mg to 30mg.

It’s not good news, but I still have other options available, increasing the frequency of my injections to every three weeks, combining with a daily tablet of  Cabergoline.  An option is a daily injection of Pegvisomant which works to control acromegaly is the great majority of people. I’d rather not have an injection every day if I can avoid it, but heh, if it makes me better then I suppose I’ll have to do it.

The other option, is to have the operation sooner than planned. I have been delaying the operation whilst we try for children just incase .

These options are ones that no doubt will be covered next time I see the professor.

Growth Hormone Day Curve

I went into hospital today for a “Growth Hormone Day Curve”. In this topic I’m going to answer some questions that I had before I first went. My fist day curve was three months ago.

What’s it for?

A Growth Hormone Day Curve is the measurement of Growth Hormone (GH) over the course of a day. The amount of GH fluctuates through the day, so by testing it at different times it allows them to get a better overall picture of what the levels are. They also measure Insulin-Like Growth Factor 1 (IGF-1) which responds to GH. In someone like me, these measurements are used to see how well my treatment is going to see how well my acromegaly is controlled.

How is it done?

I went in for 8:30 into hospital. My weight, height and blood pressure was measured. A cannula was placed into the vein on my arm. A cannula is a tiny little tube with a valve tap on it.

Every hour or so, a nurse would come along an attach a small vial to the tap and draw off a small amount of blood. This doesn’t hurt one bit. At lunch time, I’m given lunch, and a cup of tea or coffee. The blood testing continues every hour until about three o’clock in the afternoon. The cannula is taken out, and I’m free to go on my way. The worst bit for me is when they take the sticky plastic off my arm that was securing the cannula – it’s really pulls on the hairs of my arm. Ouch!

Can I eat breakfast before I go?

You need to check. Yes, I could eat breakfast before arriving. Check however with your hospital for the procedure for yours. If for example they are planning on doing an “oral glucose tolerance test”, then you will be asked not to eat before you go. It’s best for you to check.

Is it painful?

No, not really. When they put the cannula in, it is a bit painful, but it’s not too bad really. It’s a bit like having an injection. You might have to be a bit careful of not bending your arm too much if it’s put in the fold of your arm (on the other side to your elbow).

Taking the cannula out doesn’t hurt. Taking the sticky plastic tape that was holding the cannula in place really pulls on the hairs of my arm, and I find that the worst bit!

So what do you do all day during the “Day Curve”?

There’s always someone to talk to in hospital – nurses, other patients, and unsuspecting doctors. I managed to have a really good chat with one of the doctors (St.) who was brilliantly helpful.

I took some books, a magazine, a newspaper and a laptop. I was given free access to the hospital wifi whilst I was there, which was great.

I actually quite enjoyed my day in hospital!

How often is it done?

In my case, it is done every three months. This is because my acromegaly isn’t fully controlled at the moment, and I’ve not gone for the operation to remove the pituitary adenoma as yet. As you get better controlled, you may find that your day curve becomes every six months or twelve months or longer. Naturally, if your treatment is a real success then you may only need a day curve unless it is suspected that your condition has come back.

When do you get your results?

At The Christie hospital where I attend, the GH and IGF-1 are tested every-other Friday at the moment. I will probably get a phone call next Friday from the Acromegaly Research Specialist Nurse to let me know the results. The results will be discussed in detail by the Professor during my appointment next month.

First Aid for Acromegaly?

We’ve recently moved offices at work – only by a few yards. Some of our colleagues are in the original office.

Some months back, I told the lady who looked after Health & Safety that I had a condition known as Acromegaly, and that I’d be injecting myself three times a day for two weeks. I thought I’d tell her just in case something happened. I gave her some contact numbers (the endocrine unit at hospital) and the name of the drug I was on (octreotide).

Since then, I’ve just been on a monthly drug (Sandostatin LAR) given to be by a nurse who sees my bum cheek every month. Lucky her.

Anyhow, one of the first aiders came to me on Tuesday asking what time I’d be going home on Friday. I told them, about three o’clock. It turned out that because we had moved offices they were moving one of the first aiders over from the other office to make sure they had first aid cover for me!  Around two hours later, another chap came up to me to let me know that the first aider would be this other chap on Friday… and then today (Friday) this “new” first aider from the other office came up to me and said “Hi, I’m the First Aider for today!”.

Blimey! I feel a complete freak today! I wish in a way that I hadn’t told them those months back that I had the condition, but I know they are only trying to do their best.

I’d better make sure I don’t get a paper cut today, or stump my toe or anything…

Spacelabs 90207

I’m wearing a Spacelabs 90207 again today. Whoohoo – the fun never stops!! (I do secretly find it quite fascinating though, but don’t tell anybody!) I was given it when I last went in for my “Day Curve”, but I postponed wearing it because of recent events that would raise anybody’s blood pressure.

It’s a 24 hour blood pressure ambulator. In plain English, it’s a contraption that measures my blood pressure at the most inconvenient of moments all the way through the day every fifteen minutes, and then every hour or so at night. http://acromegaly.wordpress.com/2009/01/15/24-hour-blood-pressure-monitor/

It’s not really all that bad – in fact I found it quite helpful in timing my food in the oven – becasue I knew if the armcuff blew up twice then the food would be in there just right.

Thankfully, I’ve got two days off work this week so I didn’t have to bump into many people. I did however have to go to the shop earlier. Whopping temperatures of 26′C-plus stopped me from wearing a long shirt, so my blue blood-pressure cuff was quite visible. Thankfully, the shopkeeper reacted by being extra-ordinarily “nice” to me (he probably thinks I got “something serious” or something!!).

Three quick notes:

• Fitting it to the left arm, put the cuff on the left arm with the tube going up your arm, over the back of your neck, in front of your left shoulder and down to the unit on the right, attached to the strap around your waist. I put it through the belt hooks of my trousers.You can put your shirt (or blouse) on after so it’s more concealed and so the tubing is less likely to be snagged.

• The unit will show your systolic pressure, diastolic pressure and your pulse only for the first three readings when you first turn it on. After that it will just show ” – - – - “. This is not an error – believe me, I rang up Spacelabs this morning. The first three I assume is to show any medical staff that it’s showing “sensible” readings, the reason it doesn’t show you the rest is in case it influences your blood pressure by knowing it.

• If it beeps four times after trying to take your blood pressure reading it means that it’s not happy, and it will try again in about a minute or so. It’s a good time to check that your cuff hasn’t spun around or moved. The “ART ^“  (“Artery”) on the cuff should be positioned so that the arrow is facing down your arm on the inside of your arm. Try and stay still when it’s being done if you can. When I was walking, I pretended I was texting somebody on my mobile…

Anyhow, I’m off to bed now. I know I’m going to be woken up every hour with my arm being tightened but it’s no big deal.

Meeting a doctor in the street

My wife and I were in Manchester today, and we’d done a bit of shopping then went to the Art Gallery neat St Peter’s square. Anyhow, we suddenly spotted a doctor that I had seen many months ago (on Christmas Eve, 2008 to be precise). She was the endocrinologist (Dr S.R) that went through my notes and told me what the radiologist had written about the MRI scan of my pituitary tumour, and through the other tests I had.

Back to the story! Suddenly, a bout of “What is the etiquette of bumping into a doctor on the street?“. I wasn’t sure if it was exactly fair for a patient to jump out in front of a doctor! Anyhow, I said hello and thankfully she stopped, and her face lit up. Phew. “Do you remember me, you know, acromegaly and all that?” I asked, hoping she’d remember. After all, it was six months later and she’d probably seen whole busloads of people since me. “Yes, of course I remember you, I was only asking about you to Prof [P.T.] at Christies about you yesterday” she replied. She was there with her husband, who had no doubt been dragged around the shops and art galleries like I had like a good dutiful husband.

Anyhow we talked about my treatment, and how she was going through the slog writing-up research on a drug used for acromegaly. She asked my wife how she was doing too, which was great. My wife thanked her for discussing Christies as one of the “centres of excellence” for my treatment.

It really cheered my wife and I up. What a great doctor she is!

I still don’t know the etiquette of what you should do when you spot one of your doctors on the street. I know what I’d do now though. (I can just see all the medical staff that I deal with going out wearing disguises from now on.)

News: Camrus CAM2029 Octreotide FluidCrystal

“Lund, Sweden. 26 May, 2009 – Camurus announced today that the European Medicines Agency’s (EMEA) Committee for Orphan Medicinal Products (COMP) has issued a positive opinion on the application for orphan designation for Camurus’ drug product CAM2029 (octreotide chloride FluidCrystal® Injection depot) for treatment of acromegaly.”

Exciting news – because this drug is a once-a-month drug administered as a subcutaneaous injection using a small thin needle (just under the skin) as opposed to current long-acting preparations of octreotide that need to be administered into muscle tissue. As a result the drug will be straightforward for the patient to administer themselves.

Research: Benefits of using Cabergoline with Sandostatin LAR

Hot off the press (well, it was published online on May 8th 2009):

Octreotide LAR and Cabergoline association has been shown to be an effective alternative therapy for those acromegalics who still have active acromegaly despite monotherapy with Somatostatin Analogues, mainly for those with lower pretreatment IGF-I concentrations. According to previous studies, the beneficial effects of Cabergoline occur even when pretreatment Prolactin level is normal and/or there is no tumor Growth Hormone/Prolactin co-expression.

See the article here: Neuro Endocrinology Online

A quick bit of background to this… (as far as I understand it!)

The pituitary tumours (adenomas) in acromegaly all pump out growth hormone, but some of these tumours can also pump out other hormones such as Prolactin. If the tumour only pumped out Prolactin, then the tumour would be classed as a “prolactinoma” (and you wouldn’t have acromegaly then either), and the course of treatment for these people would generally be Cabergoline, which is a tablet taken orally. Cabergoline is pretty effective at reducing the mass of prolactinomas to the extent that prolactinomas can disappear altogether. Unfortunately, for people with acromegaly, cabergoline (on its own) doesn’t have such a profound effect as this, but can have beneficial effect is some people.

What this article is saying is that for people who are not getting good control, the addition of Cabergoline can be beneficial even if there is no apparent excess of Prolactin, especially if their original IGF-1 (Growth Factor) is in the lower numbers (but obviously above the normal range).  Previously Cabergoline would only generally be given if the Prolactin was sufficiently elevated.

Obviously don’t go running in to your doctor demanding Cabergoline, he or she still have to balance the benefits and risks of treatments, and have other things to take into account.

Cabergoline & Heart Valve Damage

One particular potential very serious side effect is heart valve damage when taking Cabergoline – but this research was restricted until recently to patients who were treated with Cabergoline for Parkinson’s disease where the dose is much higher. A recent study ( Waki, Clark, Atkin [2008] ) shows that for doses associated with treatment of prolactinomas that heart valve damage is not statistically significant.   Other studies are however less conclusive Kars et al. and suggest cardiac screening.

First Day Curve

I had my first “Day Curve” today. I wasn’t too sure what to expect, but it wasn’t as bad as I thought. (I’ll try to add a photo)

I checked into the Endocrine department at the hospital (The Christie). I was weighed, my height was taken (I’d be at my ideal weight at 6’3″ tall for my weight – it’s a shame I’m only 5’9″…). My blood pressure was taken (it was high!).

I then had a little “cannula” put into the vein of my left arm, in the inner bend of the elbow. A cannula is like a little tube with a tiny tap on it so that they can draw off many samples of blood without having to stab you with a needle each time. Brilliant invention, bleedin’ marvelous! I’m always a bit squeamish when they put it in, but it’s not all that bad (thank you S.).

Anyhow, a couple of samples of blood taken every one-and-a-half hours out of the little cannula, and by about 3:30pm I was done. That was easy. I spent the day talking to the nurses, a couple of other outpatients, and installing a little photo gallery for my wife’s website.

The highlight of my day was seeing the acromegaly nurse (M.) who could see a difference in my appearance after my three months of injections, and seeing the professor again. They were both very reassuring, although I found I had very few questions this time. I’d probably run out of questions since I last interrogated them! I also feel like I have lost part of the “mental edge”, but that could be due to recent stress. Who knows, eh? My blood pressure still appears to be not very well controlled, so I’ve been given another 24h blood pressure monitor to wear to monitor it.

So, the “day curve”? Nothing to worry about (probably the worst thing of the day was the “road kill” turkey sandwich!) I think the next one will be in three months time.

Wow, haven’t you got big hands?

I’d been wrestling with a rubber stamp at work today trying to change the date on it. It’s so impossible to change the date without being covered in ink. The rubber stamp won the wrestle (as it always does) and covered my fingers with blue ink. So off to the works kitchen I went to try and scrub it off with a scouring pad.

These were my hands (all two of them) before I started any treatment. My wedding ring is size "Z+".

As I was scrubbing, washing away the defeat of my battle with the afore-mentioned vulcanized office implement, a chap behind me remarked, “Wow, haven’t you got big hands?!”. I was quite taken aback, I was quite off guard. I smiled and said, “Ah, well you see I have a tumour on my pituitary gland, in the middle of my head, which is giving out growth hormone. One of the effects it has is that it makes my hands and feet bigger amongst other things.”.

I then watched him as the cogs whirred around in his head for a moment. I was expectant for a significant response, I waited for a moment. His eyes darted in an up-and-down motion, when he asked, “So, apart from your hands and your feet, does it make anything else bigger?”. I smiled, grabbed my coffee and strolled out.

A few minutes later, when I could contain myself from laughing, I went back over to see him and explained all “things acromegaly” until he’d wished he’d never asked. I must admit, I did feel a bit of a “freak” today after his comment, but took it on the chin (you know, the one that’s growing forward…)

Shoe Laces are Getting Longer

Just something I noticed this morning – my shoe laces are getting longer!

Since starting Sandostatin LAR treatment (Octreotide, a Somatostatin analogue), I’ve noticed a few improvement.

It appears now that my feet are getting a bit ‘slimmer’, so I’m tightening my laces a bit more, so the laces are appearing to get longer! One of the features of acromegaly is growth of feet, so it’s encouraging to see a positive change here. Naturally any bone growth can’t be reversed, but the soft tissue growth can be reversed – so this is what I’m experiencing.

Third Sandostatin (Octreotide) LAR injection

Well today I had my third ever Sandostatin LAR injection.

I was a bit more prepared than before.

My appointment was at 5pm at my local medical centre.

I thought I’d take a few things to take the edged off any discomfort of the injection. At around 3:30pm I took some paracetamol, and ibuprofen. At 4:00pm I rubbed some Voltarol gel (diclofenac sodium) on my ‘selected’ right bum cheek. I then drove from work (leaving a meeting a bit early) straight to the medical centre. Obviously, I’m not recommending taking pain killers before an injection but that’s just something I’ve weighed up the risks and accepted just in my own case.

My very own box of Sandostatin LAR Octreotide 20mg. It's now been injected in my bum cheek.

I got into the appointment a bit early, the nurse prepared the injection, took my blood pressure, then I lay on the treatment bed rolled onto my side with my belt undone and my trousers unfastened and without any todoo she injected me. I hardly felt a thing, and it was over very quickly. She said I was “very brave” (as nurses do – it’s all part of their training), but I told her I’d cheated by taking some painkillers about an hour or so beforehand. She joked and said I wasn’t so brave after all – but heh, I felt absolutely fine, and I still do this evening.

We had a bit of a chat, then off I went to the gents and applied a self-heating heat patch and that was that.

So if anybody is worried about the once-a-month injection of Somatostain LAR, then please don’t be. It’s nothing to be worried about at all. Now I can look forward to another month of improvements in my health!

Pituitary Foundation Forum

The Pituitary Foundation Forum was closed down on April Fool’s Day. Unfortunately it was no joke, but it has left people feeling let down.

It had suffered from postings being deleted after about three months at a time and by individual messages being deleted in some cases if they related to suggestions of activities or fundraising for the Pituitary Foundation. They have called for more moderators before they reinstate the forum, but the worry is that it will further alienate people with pituitary conditions from asking challenging questions.

Second visit with the Professor

I went to the endocrine department to meet with the Professor. It was great to see familiar faces again, the nurses (Ma. & Fi.) and the doctors who made me feel so welcome last time. It was especially good to meet up with the two doctors (Vi. & St.) who had endured many hours of what must have seemed as interrogation during my two overnight stays as part of a research program I had volunteered for.

Anyhow, my wife came with me today, and the appointment today was a “catch-up” to see where I was up to and how I was getting on after my first month on Sandostatin LAR (that’s the injection that’s injected one per month). He summarised some of my results and answered a whole heap of questions I had. He still had his bright red socks on to match his personality. At the end of my barrage of questions, he smiled and asked me “Have you thought of your next question yet?”. I could have talked to him all day, so I just thanked him for answering my questions so well. He was very patient with me, and has an excellent manner and so incredibly gifted in his work.

The results of my 24-hour blood pressure monitor showed that my blood pressure was being poorly controlled.

It turns out that my blood pressure looks like “common-all-garden” blood pressure. The Doctor S. now has the quest of finding a better combination of treatment for that for me and finding one that is compatible with my pilot’s licence.

The results of my echocardiogram shows that my heart is fine. There is a slight thickening of the left ventricle, but that’s consistent with prolonged blood pressure.

Other test that were carried out on me in the last few moths were to rule out other conditions that could have contributed to the acromegaly. Thankfully I have “bog standard” acromegaly and not something more complex like “MEN-1″.

One thing that is pretty strange is the anomaly between my Growth Hormone (GH) and my Insulin-like Growth Hormone (IGF-1). Mine is 9.8 / 1244 (GH/IGF-1). So my GH is higher than it should be (it should be less than 1) but my IGF-1 is incredibly high at 1244 (I’m probably easily in the very “top” section of people with that level). For such a high IGF-1 value, my GH is suprisingly low. Very strange.

IGF-1 is produced mainly in the liver as a response to GH being produced by the pituitary gland (and of course, by the tumour that is beavering away). IGF-1 is also produced (or perhaps just stored) in muscle mass too.

Anyhow the disparity of my GH/IGF-1 could either work for me or against me. I’ve not worked it out. In a way there is a large “leverage” (ratio) between my GH/IGF-1 so a small drop in GH would result in a large drop in IGF-1 I’d imagine. On the other hand, I’d imagine that, after my eventual operation if there was still some residual tumour left producing only a small excess of GH, it would still result in an appreciably high IGF-1 level.

It’s worth remembering that it’s not Growth Hormone (GH) that causes growth as such, but rather it’s the “Insulin-like Growth Factor 1″ (IGF-1).

They emphasised again that compared with a number of patients they have, my pituitary adenoma isn’t really all that big. Yes, of course it is a “macro”adenoma (macro meaning big), but many patients when diagnosed have much bigger macroadenomas. So I have in a way got a “smallish big” tumour!

Anyhow, my wife and I left feeling up-beat and happy about the whole thing, with the rays of the sun beaming down on us for the rest of the day.

Feeling Very Bloated – my fault!

A bit of an update. I think I’m experiencing a new gastrointestinal problem (brought on by my own stupidity, and partly due to the effects of Sandostatin LAR / Octreotide ).

I ate way way way too much fatty food yesterday – I was out on a site visit and had a massive greasy late lunch (mixed grill) washed down with two large cappuccinos and then later when I came home had a very fatty KFC.

It wasn’t until I was about to get to bed I noticed that my lower torso was tight and quite bloated. I had tried to go to the toilet to let go of some of the load (as it were). Despite my best attempts (and even after chewing on some dry prunes), nothing much was for shifting. I had taken a glass of ‘Alka Seltzer’ a bit earlier, but I’d imagine the gas produced by that made things worse. My wife was working away last night, so I went to bed quite worried and brought the phone next to my bed fearing that I could be woken up by gastrointestinal complications. One’s imagination can be one’s worst enemy sometimes!

Anyhow, thankfully I had a good night’s sleep as usual, but this morning I still have a bloated tight tummy. I’m just hoping that things improve today. To help myself though, I think I’ll avoid anything that sizzles when its cooked and instead have a lovely tuna salad for lunch! If things don’t improve then I could have a job opportunity as a “Mr Blobby” stand-in (I just need to stick on some big yellow spots).

I’m not complaining though, this could be quite a welcome ‘warning call’ to me to eat more healthily and not to be such a bad lad.

Trys

Echocardiogram – it’s a boy!

I had an “Echocardiogram” today at Wythenshawe Hospital. An “Echocardiogram” is not some sort of stripper that you’d might club together with your workmates to hire for your boss to embarrass him on his retirement do (whilst rekindling his fond memories of youth, hopefully of his wife).  Rather, it’s an examination of the heart using ultrasound – in the same way as an expectant mother’s baby is checked with ultrasound. That’s got me thinking now, if it was a kind of stripper then it would have to be one that wears a cardie that has to repeat everything – I suppose it could well be the bosses own wife in that case! He’d better watch his step.

Where was I? Oh, yes. The unit a really new hi-tech part of the hospital, decorated on its walls with images of the hospital in bygone days. Some of the photos are quite fascinating. An echocardiogram is

Anyhow the echocardiogram involved me being greeted my a technician, and I was asked to remove my shirt. I then had to lay on a bed. She put a clear gel on my chest over my heart area, and put four stick-on electrodes on me. I then had to roll onto my left side, while she leant over from my right with the probe and pressed it against my chest.

It's big and green, and very high-tech. It's the North West Heart Centre in Wythenshawe. A great place for happier hearts.

The machine she used was like an oversized chunky laptop with a big screen. Every now and again I could hear my heartbeat from the machine. She changed the position of the probe a bit, then finally put the probe near the top of my stomach, at the bottom of the ribcage.

It was probably over in about 15 minutes. I asked if everything was OK, but she said she wasn’t allowed to tell me, and that I’d be told by the doctor that referred me of the results. She then told me me that there was nothing out of the ordinary. My left ventricle was a little thickened, but that was in keeping with me having high blood pressure. (Left Ventricle Hypertrophy is a symptom of acromegaly though, but is generally reversible with treatment).

I was left to wipe the gel off and to leave when I was ready and dressed. That was easy, and quite fun!

Octreotide – explosive stuff

So for two weeks I’ve had to inject myself three times a day with a drug called “Octreotide”. It’s a “somatostatin analogue” – basically it mimics the natural “somatostatin” produced in the body which shouts “stop” at the pituitary gland to stop producing growth hormone. The octreotide version though last a bit longer than the natural one so in a way it shouts stop that bit longer! The idea has been to see how I’d react to it before going onto the monthly (long-acting) version. If you’re eating breakfast right now, then I’d suggest you come back to this posting a little later.

What a brilliant invention! Thank you Mr Roll. My bottom prefers ones quilted with little flowers. Aaaah!

Wow – I’ve never been so grateful for the invention of the toilet roll in my whole life before. The following morning after my first two injections of octreotide resulted in rumblings in my stomach the next morning. The rumblings got louder and I felt as if Loch Ness had finally been discovered in my lower intestine. Moves were definitely afoot. I ran to the bathroom and at that moment I was very grateful to Thomas Crapper for the amazing invention of the porcelain toilet. The diarrhoea I experienced was very dramatic indeed, indeed I don’t think that even a cartoon could have captured the moment any more comically than what I was experiencing. I think on that morning I discovered the answer to the World’s energy problems. The thought went through my mind that I should convert my car to run on methane. Really.

The surprises kept on coming when I looked down (let’s face it, it’s impossible not to) to discover the colour of it to be a shade of yellow or beige. Think banana milkshake with sweetcorn. Nice. At that point I realised that I should have listened to my excellent Acromegaly nurse who kindly warned me to stay off the beer and fatty foods as it could lead to “gastrointestinal problems”. In hindsight I’d totally agree that  washing down a Lamb Jalfrezi with four pints of real ale the night before was probably not the best decision I’d ever taken. Always listen to your nurse, she always knows best, just like your mother.

I didn’t fully appreciate that the innocuous phrase “gastrointestinal problems” would lead to the re-enactment of a scene out of The Monty Python, but we learn something new every day.

Anyhow, the third invention I really appreciated that morning was the window opening mechanism. The fresh air allowed us to breathe in the house, but unfortunately I suspect that the traffic outside was probably a mass evacuation of a suspected gas leak.

Hairy belly, a full octreotide injection at the ready, and a shirt with the same colour as the early gastrointestinal 'features' of treatment.

The rest of the two weeks went without too much of a hitch. The mid-day injection was a bit of a pain to do as I was at work, but I was allowed use of the disabled toilet to inject myself and they very kindly put in a little yellow “sharps bin” for me. I did struggle in snapping open the little glass “ampoules” (the little glass containers that contain the Octreotide), but it did get easier.

As a rule, I injected myself around 7am, 2pm and 9pm to try and spread out the time between injections. I found it a bit difficult to completely relax in the evening because I knew I’d have to inject myself later.

The gastrointestinal problems went as quickly as they arrived – lasting only a day or so. The colour of my stools (what a great word!) turned more normal-coloured after about five days.

It’s great to be on the path of treatment, and I’m so grateful to have the opportunity of living in an age when I can be treated, and by such brilliant people. I’m also grateful for my wife not throwing me out of the house clutching a toilet roll between my two chunky big hands.

Started Treatment for Acromegaly

Brilliant! I’ve now been started on treatment for my Acromegaly. For the time being, until my wife and I are blessed with a child, my operation will be deferred and my treatment will be by medical therapy.

My lucky bag of octreotide for my first two weeks.

I’ve just been given a big bag of lovely goodies that are the start of my treatment. The acromegaly nurse showed me how to inject myself. My first injection was a lot easier than I thought, despite my apprehension and the natural urge to not want to inflict pain on myself. It’s what’s known as a Subcutaneous (‘under the skin’) injection, and the needle is very very thin indeed and just goes into the fat. I’ve been shown how to inject it into the flab around my belly. Plenty of places for me to aim at then!

The drug I’ve been given is Octreotide which is a Somatotatin Analogue. It mimics the natural hormone Somatostatin which causes the cells that produce growth hormone to reduce production. It’s a bit like a brake on a car. It can also cause the tumour to shrink a little too.

In the first two weeks, I’m getting a short-acting version (one that doesn’t last very long in the bloodstream) to see how I get on with it. As it’s short-acting, I have to have it three times a day (ouch!). But heh, it’s only for two weeks.

After that, if all goes well I’ll then go onto a once-a-month version, Sandostatin LAR (the ‘LAR’ bit means Long Acting Release).

Octreotide in it's box. It comes in packs of five and it's stored in the fridge. Notice the syringes, needles and the Octreotide.

Anyhow, I’ve been told that the main side effect that a lot of people get when they first take Octreotide is loose ‘stools’ and wind. The acromegaly nurse said that I may well find that the colour of my stolls will change to a lighter shade. I’ve got plenty of toilet paper ready! The reason for the gastrointestinal changes is becasue the somatostatin analogues not only reduce the production of growth hormone, but also reduce the contraction of the gall bladder – so any fats consumed don’t get broken down as well as normal.

Octreotide 50ug with Mr Bump plasters at the ready!

Anyhow, I’ve got my “Mr Men” plasters (“band aids”) ready, with “Mr Bump” on them all. I’m not sure if I’ll need them – but what the heck, they’ll cheer me up if I do need them.

In the photograph, you’ll notice the small glass container. The Octrotide comes in this tiny little container, and the top of it is snapped off with a neat little ‘pop’ sound. The syringe is then filled using a larger green needle, then I swap the needle of the syringe to the tiny thin orange tipped needle.

Once all the air is expelled from the syringe, I get hold of a bit of flab on my belly and push the needle in, and then slowly discharge the syringe into me. I think the worst bit is the ‘anticipation’, but it’s no more painful that squeezing a spot or a blackhead really!  (ugh!)

I’m really excited now, I really feel so relieved that I’m now on the path of recovery in some way. It’s been quite a long wait it seems, but as soon as I was referred to Christies Hospital things moved along very quickly.

I really hope the Octreotide works for me and that the side effects aren’t too bad. I’m looking forward to the coming weeks when hopefully I can report of some improvements. Hopefully I’ll lose a little weight and my overall health will improve.

The idea of injecting myself for the next two weeks is a bit scary I must admit, but I’m just going to take each one as it comes. It’s there to make me better, and hopefully it may also be a means for me to become a father one day too. After all, a grown man can’t really be buying “Mr Bump” plasters for himself, can he?

Guinea Pig – Free Food!

I very foolishly bravely volunteered to help out with a bit of medical research. I’ve read a fair bit of research since being diagnosed with Acromegaly, so I thought it time I “did my bit” by giving something back. The research will take place in two stages – before treatment and after treatment. On both stages, it requires me to stay overnight to take blood samples, and a whole-body MRI Scan.

Great Arabic Middle Eastern Cuisine.

I’d imagine that if I say too much about the research that it could jeopardise it, so I’ll keep it sufficiently “woolly”. I’m also not mentioning the names of the doctors and nurses.

Anyhow last night I went in for 6pm to Christies to take part in the “Overnight stay”. To my great delight, when they asked what meal I would like they said that a couple of the other (healthy) volunteers had a kebab as their meal. In order to ‘standardize’ the meal (of course!) I opted to go for the same. Instead of just waiting in my hospital bed, I asked if I could go along with the doctor to pick it up. So off we went, crossed a main road and got our kebabs. I was joking with doctor how they could get a lot more volunteers if they advertised that they were giving out free kebabs.

Yum yum. The "standardised!" meal. Wanted: Medical Volunteers - FREE KEBAB!

At eight o’clock I had a cannula put up both arms, in the one was a saline drip. Every ten minutes a tiny amount of blood was  taken from my right arm (the saline drip was turned off every time a sample was taken). Later on, into my left arm very slowly through the rest of the night and next morning I was automatically injected with a couple of things.

I didn’t sleep all night – although I might have dozed off in between samples in the early hours of the morning. At around 3 o’clock in the morning I was startled by the alarm sound of one of the machines. Hey, it could have been really a very bad alarm after all! I shouted for help at the top of my voice, and the doctors came and fettled with the machine until it worked again. I was going to suggest they hit it with a big hammer, but thought better of it because I was hooked up to it…

The doctors changed shift at that point, and after the alarm giving me such a fright I wasn’t much in the mood for dozing, never mind sleeping. So I spent the rest of the night asking the doctor as much as I could. I learnt absolutely loads. I’m sure I was a real pain in the neck for him.

One of the longest nights of my life, but well worth it! Where would we be without medical research?

At eight o’clock in the morning they injected two other materials into my bloodstream. I was really really tired at this point, and got quite scared when they were injecting me. I felt a burning sensation in my throat and up my left arm as I was being injected. I started crying, really sobbing. It was just a lack of sleep probably. One of the nurses comforted me by stroking my arm and telling me to calm down. I calmed down then felt really embarrassed for being such a wimp!

By half past eleven in the morning, my job was done and I was chomping away quite happily with a plate of toast and jam, slurping a cup of coffee feeling a lot better. A quick shower, and I felt even better still. I had a taxi home, and had a sleep until my lovely wife woke me up to have my tea.

The doctors and nurses were absolutely brilliant, it was such hard work for them taking so many samples under such strict timings, and doing the blood preparations as they were going along too. The small snags they came up against they handled very professionally.

I would definately recommend helping the medical profession by being a volunteer. If nobody volunteered then no new treatments would come to market. Not only does it help people, but also it’s an excellent opportunity to spend time with doctors and discuss matters at a considerable length. The benefits far outweigh the temporary discomfort experienced.

Sign up today (ask about the free Kebab!).

24 Hour Blood Pressure Monitor

Ghostbusters? Spaceman? Space Cadet maybe? This little thing would keep me entertained for a whole 24 hours!

I left hospital on Monday with a big green plastic bag. In it was contained two five litre containers (so about a gallon each) and a little blue device with ‘Spacelabs’ on it.

The two containers are for filling with (ahem) urine. Yes, urine. They are for collecting 48 hours’ worth. I started yesterday morning, so by now I’m on my second container. I’m glad I didn’t need to go more often!

Spacelabs 90207

It’s a bit of a task to remember to “go” into the container, but I’ve managed it so far. The bottles are primed with an acid preservative, and there’s a warning not to urinate directly into the container.  That could have been painful!

The Spacelabs thing is an “Ambulatory Blood Pressure Monitor”. It comes in a soft blue pouch that is fastened to your belt or to the belt supplied with it. A black air tube is connected to the cuff that is fitted to your arm.

All I had to do was to flick the switch at the bottom an turn it on. When I did, it made a gurgling sound, then beeped and came up with an error code. Had I broken it already? Anyhow, I whizzed back to the hospital and swapped it with a replacement.

So for the last 24 hours I’ve been hounded every twenty minutes with the machine bleeping at me, and blowing my arm up. At night from 10 o’clock it didn’t bleep, and took my blood pressure every hour, until 6 o’clock in the morning when it bleeped at me again and restarted the “every 20 minute” routine. To save waking my lovely wife all through the night, I slept in the spare room. It’s a good job I did – she’d have thrown it through the window!

A yet to be filled container. Notice the "Corrosive" label!

It’s funny, they disable the bleeping sound at night. As if that makes a jot of difference at all. Every hour on the hour in the night, the thing whirred and blew up my arm waking me up after just falling asleep (or so it seemed). A few times it repeated attempts to take a reading.

Needless to say my wife had a brilliant night sleep, away from my snoring. I woke up, really tired, to encounter a big plastic container to wee into. Hey I’m not complaining – it’s all part of the experience!

So tomorrow I will return to the hospital with a much heavier green plastic bag with two full gallon containers, and a little Spacelabs unit that didn’t get hurled through a window (this time, anyhow!).

Meeting the Professor

Visual Field Tester (patient looks into the hollow. When a spot of light is seen, the patient presses a hand-held button. Once all the spots of light have been shown, a map showing any defects in the extent of vision can be made. In acromegaly any loss in peripheral vision would indicate that the tumor was pressing against the optic nerve.) Thankfully my results were fine.

I arrived at the Endocrinology Department, having not eaten since the previous day. A cannula (a small tube) was put into my right arm and then over the next two hours I had an Oral Glucose Tolerance Test (OGTT) for Growth Hormone. This involved my having a very sweet drink, and a small blood sample taken every half hour. I got a chance to speak to three other outpatients, one of them had acromegaly too. He was doing really well after over ten years of it, and looked fine too!

Next, my wife and I went to meet the professor of the department. He’s very well known in the field of endocrinology, especially in acromegaly. A tall slim chap, in a light grey suit and bright red socks. The socks cheered me up!

He explained to me what I had (acromegaly) and the treatment options. He also went through some photographs of my from over the years. Most importantly we discussed that we are trying for children, and we would be starting IVF treatment this year. Naturally, surgery is the option of choice with a pituitary tumour but the risk is that the surgery could cause a drop in my other hormones that would lead to fertility problems. We agreed that my treatment instead would amount to monthly injections of a somatostatin analogue, looking to have surgery in the future (say, next year). Before going onto the monthly injections though, I’ll have to have three injections a day for two weeks just to see if I have any ill effects or not. These somatostatin analogues have been shown to reduce tumour size in some patients, as well as reducing the excess growth hormones to safe levels in the majority of patients. It was very encouraging to meet the professor, he had an excellent manner and discussed matters in a very methodical and understanding way.

After that I had a visual field test. It confirmed that my optic nerves are not being squashed by the tumour (great!). After I had some photographs taken of my face (front and sides) and of my hands. I was impressed by the set up – it was a proper studio, complete with large studio flashes and softboxes.

We went on our way, but I did leave with a big green plastic bag with two large containers and a device with “Spacelabs” on it. More on that in my next posting!

Trystan

First Visit to Christies

It was my first visit to Christies today, to visit the Endocrine department as an outpatient.

The Christie

Tropical Fishtank

Starbucks at Christies!

I was really impressed with the whole set up at Christies. Naturally, a lot of the patients who go to Christies Hospital are there due to cancer. The hospital is laid out to be as welcoming as possible, and they seem to have struck a great balance.

In the reception is the Cafe (serving great Starbucks coffee and a selection of sandwiches, chibattas, snacks and cakes), a little shop selling newspapers, gifts and cards, with a cash-point machine outside, and even a little hairdressers.

The Endocrine unit is right above the reception entrance, so we took the stairs and got straight up there. We were give a very warm welcome by the registrar doctor, and he took his time and took down all the details he was after. This blog came in useful when I had to check a detail for him! He also asked about any family illnesses, so he drew out a family tree with some of the details on. He took my blood pressure, listened to my heart, my chest and then squeezed about with my lower abdomen. I had baked beans for breakfast (on toast), thankfully they didn’t let themselves known! He explained things well, and had a very gentle manner.

We were then introduced to the Acromegaly Nurse. Wow – she was absolutely brilliant, she went through everything with us. We didn’t feel rushed in any way – she was so straight-forward and clear in everything she told us. Despite how optimistic I already was, my wife and I were ten times more optimistic. The position of this nurse is unique in the United Kingdom – her job is to work with the acromegaly treatment with all the acromegalics referred to Christies. It’s her full time job, and she’s incredibly knowledgeable and good at it. As this blog is “public”, it’s unfair of me to name her as much as I’d like to. Those who have met her will know exactly who I mean!

We had so many questions, and got so many more answers! I feel already that treatment is only just around the corner. Phew! We went home very happy indeed.

MRI Scan Results

I got the results of my MRI scan on Christmas Eve.

Overall, I’m happy about the results, it could have been a lot lot worse.

Ok, first off I definitely do have a pituitary tumour. It’s what is termed a macroadenoma.

11x15 mm

Pituitary tumours are classed as either “micro” or “macro” “adenomas”. If the tumours are less than 1 cm in diameter then they are classed as “micro”, and so if they are bigger than 1 cm in diameter they are classed as “macro”. So mine’s in the bigger category, and it’s dimensions are 1.1 x 1.5 x 1.5 cm. It’s not huge.

So the summary is: (I’ve added the bits in the brackets – I might not have it quite right!)

• No cerebral hemorrhaging. (No bleeding in the brain)
• No calcification (no build up of calcium/bone material within)
• No necrosis (no dead cell tissue)
• Not taking up any space it shouldn’t be doing
• No suprasellar extension (the tumour isn’t growing outside of the pituitary area)
• No homogenous enhancement of the gland (the gland itself isn’t getting ‘taken over’)
• Optic Chiasm and Pituitary Stalk normal with no displacement (it’s not affecting my sight)
• Wouldn’t really expect the tumour to push against anything important anyway with its size
• Blood vessels in the area are normal
• Thickening of the right maxillary sinus. (that’s not so good, but I don’t have symptoms)
• No further intercranial abnormalities
• Rest of brain fine (my wife and I had to laugh with this one)

The tumour is in a good position for surgery (up through a nostril), and there is clear definition between the tumour and the pituitary gland.

All good stuff! Not quite so good (but almost comical) is that the doctor described me as “rip-roaringly acromegalic“, and I need to get this sorted out. The next step is my referral to Christie’s Hospital (Manchester, UK). Let’s get this treated!

Get MRI Results Tomorrow

I’m getting the results of my MRI Scan tomorrow afternoon. Strange really, because it will be Christmas Eve. I’ve not scared myself at all about the prospect of Acromegaly so far, and I’m hoping that won’t change once I get the results. The best result I can hope for is that they’ve identified a benign tumour and that it isn’t a big one.

Whatever happens, whatever I’m told, I’m going to do my utmost to keep everything in proportion and so not spoil everybody else’s Christmas!

Guinea Pig

I offered my services to my doctor as a “guinea pig” so that other doctors could examine me so that they could meet someone with acromegaly. Acromegaly is a very rare condition, and it’s likely a doctor will not knowingly meet somebody with the condition in their career.

I was taken up on my offer to be examined, and today I was examined by a female student doctor under the supervision of a male doctor.  She had a very good and sympathetic manner and asked questions in a structured methodical way.  I showed her my hands and feet. My hands are quite “podgy” almost like the kind of hands a bit like you’d expect on the paws of a bear (well, not that bad!). My feet have a thick heel, in fact the back of my heel extends further back than on normal feet. 

I was then taken into the examination room, and after taking off my shirt was given an upper-body physical examination of my bones, articulation, general muscle strength and reflex.  She also performed the Phalen’s test for Carpal Tunnel syndrome.

She was very keen to do everything correctly, although she was rushed a little by the GP she was with. I think given more time, with an examination of my head and neck she would have detected a slight thyroid goitre (or enlarged submandibular gland) and a small build up of bone at the back of my skull (in line with my eye level).

I found the experience positive. It got the whole thing off my chest and made me feel as if in some small way that I might have been of help. 

I can only hope that the examination was useful to her and the doctor in helping them in the future. Hopefully now after seeing the signs of acromegaly “in the flesh” it will help them to diagnose the condition early in others and so improve prognosis.  She’ll be an excellent doctor.

Oral Glucose Tolerance Test

This morning I had my Oral Glucose Tolerance Test (OGTT) for Growth Hormone whilst I am waiting for the other results. The OGTT is to see the effect of my growth hormone (GH) levels over two hours after taking glucose. In normal people the GH level goes down after taking glucose.

I arrived at 8 o’clock this morning at my local hospital. The nurses were all very jolly and professional. I was their first “customer” of the day in the Investigations Unit. They took some blood, and then gave me a small glass with a sugary drink. The sugary drink was literally glucose in luke-warm water, ugh. They gave me a big jug of water with ice cubes in, and said I could drink as much water as I wanted. I then settled down and read a biography of CS Lewis that I was given 17 years ago and I hadn’t managed to get round to starting before.

Over the two hours I was there the room filled up with seven other patients, four of them were on drips. I felt quite fortunate really. One chap there looked like a real “rock kid” in his late twenties, goatie-beard and a couple of facial studs. He looked really weak and he was on a blood drip. Hopefully he’ll be “rocking it large” again soon. There was a really old lady in there too, she looked so very frail in her pink dressing gown and big pink slippers. The nurses were lovely with her and made her comfy in the reclining chair.

Anyhow my two hours was up, and another blood sample was taken. That was it. I was very kindly offered a hot drink and some toast. I had a cup of coffee and then went on my way. What a great bunch of nurses, they deserve medals and pay rises.

I do suspect that perhaps they should have taken blood every 30 minutes during the investigation (from reading up about it). I’m not too sure if today may have been in vain or not. I don’t suppose this test is done all that often so it’s understandable for things to be missed.

All in all, the Oral Glucose Tolerance test isn’t too bad, and it’s a good opportunity to catch up with some reading.

Still not referred. Taking ages.

On Friday I phoned up my local hospital (where I’d seen a specialist) just to check that I’d been referred to Christies Hospital to see an endocrinologist to start my treatment. I was told I’d not been referred yet because the doctor there wanted to see the results of my MRI scan before being referred.

What a nightmare. This is just delaying my treatment, possibly just so that the doctor there can gain experience in acromegaly. We all have to learn somehow though I suppose, and he’s only trying to do his job.

While I was on the phone I asked if I could be booked in to do an Oral Glucose Tolerance Test (OGTT) for Growth Hormone whilst I was waiting for the other results. The doctor in the hospital hadn’t booked me in for one because my IGF-1 value had been through the roof. For completeness though, I feel it’s important to have the test done as it gives a basis against which my future treatment can be compared against. The purpose of the OGTT is to see the effect of my growth hormone (GH) levels over a few hours after taking glucose. In normal people the GH is suppressed after taking glucose. Anyhow, I’m booked in for tomorrow.

I get the results of my MRI scan on December 24th (Christmas Eve), and then when I do get referred to Christies Hospital it could be up to three months waiting list before I see somebody. I’m worried that I might start experiencing a number of the other symptoms of acromegaly while waiting, symptoms that would remain with me even after treatment.

A review of my timeline so far:

• Oct 15th 2008: Visit Doctor with suspicion of acromegaly
• Oct 16th 2008: Blood test
• Nov 5th 2008: Results of blood tests. IGF-1 is >999 (so I have acromegaly)
• Nov 17th 2008: Dental X-Rays show my lower jaw has grown forward.
• Nov 26th 2008: Go to see endocrine team at local hospital. ECG, Chest X-Ray.
• Nov 27th 2008: Blood tests (for pretty much all hormone levels)
• Dec 12th 2008: MRI Scan (scanning for pituitary tumour)

Next scheduled events are:

• Dec 16th: Oral Glucose Tolerance Test (for Growth Hormone)
• Dec 24th: Results of MRI scan, blood tests, ECG, X-Ray.