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.

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.

Eric George Davies

Eric George Davies 1934-2009 (Photograph August 30th 2008)

Eric George Davies 1934-2009. I’ve been really trying very hard to keep this Acromegaly Diary to just my life with acromegaly, so that it will one day be of help to others with this condition. One thing that I simply cannot keep from my diary is the funeral of my lovely Dad today.

He was the best Dad I could have ever hoped for, his whole life and positive outlook was (and is) a real inspiration to not only myself, but to so many people whose life he touched. He was a much loved man, known for his equal generosity of time for people, his wonderful story-telling and joviality of spirit.

He died after unfortunately been tragically diagnosed very late with cancer in his liver, kidney, stomach and spleen. Until his post mortem the primary cancer is as yet unknown, and may remain so as the progression of cancer was so advanced.

The nurses and doctors that gave him palliative care in his last weeks of life were absolutely wonderful, with full credit to them.

Naturally, words cannot even begin to describe the loss to myself and my family, especially my mother.

As far as my journey with Acromegaly, a pituitary tumour seems so insignificant compared to the loss of my own Dad, but the thing that encourages me is the positive changes that he saw in me in starting treatment.

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. Fear not, it has a replacement! – PituitaryChat.com (visit now, and please spread the word)

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. One chap called Paul had offered to start a Pituitary Awareness campaign in Ireland, but was subsequently banned from their forum before its closure. 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.

So, a generous kind-hearted chap called Paul, based in the Republic of Ireland has set up a forum called PituitaryChat.com. He suffers from a prolactinoma and Addison’s. He hopes that by a forum that is “run by pituitary patients for pituitary patients” will be a great help.

The outlook behind the forum looks promising, and hopefully I’ll see some of you on there.

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.

My First MRI Scan – Brain Scan!

I went along to Rochdale Royal Infirmary today for my first MRI Scan of my brain to look for a pituitary tumour causing my acromegaly. My lovely wife came with me. We both came fore-armed for the wait by buying our favorite newspapers each. We spent the waiting times commenting on each other’s stories in the newspapers and listening to the fascinating conversations of an elderly group of people discussing what they were planning to eat and drink at Christmas.

I’d taken along a compass with me to see if there we any great fluctuations caused by the massive magnets of the MRI machines. I only took it as far as the waiting room – there was a small fluctuation, but nothing as much as I’d hoped.

Anyhow, about forty minutes later than my appointment time, my name was called and in I went. I gave my wedding ring and my coat to my lovely wife and scuttled off. I was seated on a small chair while an elderly lady patient walked out of the MRI room. A few seconds later I smelt a really disgusting smell in the “wake” of her passing me. Poor lady. Thirty seconds later, three members of staff were frantically looking in cupboards trying to find an air freshener.

Anyhow, the person conducting my MRI scan was a young lady, probably in her mid-twenties dressed in a vivid royal blue hospital outfit. She was very exact and official in her wording which gave me confidence that she was working to a plan. Great stuff.

I was taken into the MRI room. Wow – brilliant – a great big oversize donut with a bed attached to it. It would be Homer Simpson’s dream come true. Whoohoo!

I was dressed in my own clothes, she took my glasses off me (I’d worn glasses today on purpose instead of contact lenses – just in case). and then I lay on the bed, compete with shoes. For some reason I’d expected to change in to a gown. I put in some ear plugs. She put a small white cage thing over my head which had a mirror on it so that I could see my feet (or rather my shoes). Very handy I thought in case somebody tries to make off with my shoes while I’m in here! Hey – you’ve got to watch those people from Rochdale I hear!

In a way because she was so serious, it had in a way made me feel a bit apprehensive. She placed a little grey bladder thing into my hand connected to a tube to squeeze in case I wanted the thing to stop at all. I guessed I couldn’t be given a switch on a cable because of all the magnetism in the machine.

GE 1.5T Signa HD Excite - as used in Rochdale Royal Infirmary

I was then sent into the donut. It’s strange, but I went in further than I’d imagined I would – after all they were only testing my head. That worried me for a second, but that soon passed. As I was passed into the tube I felt a sensation as if I’d been “combed” quickly from my head downwards. Not an unpleasant experience in any way, but quite unexpected.

The repetitive noises of the MRI machine started quite quickly. Low notes and higher notes. A few times the bed I was on would move in or out slightly, and the noises would resume. I imagined that the higher notes were taking ore detailed images, but I don’t know. I could feel a very slight tingling sensation in my face, especially around my eyebrow region. and in my cheeks during the test. Not unpleasant.

The noises stopped and the lady said that she’s be bringing me out. She explained that she’d need to give me a small injection. I asked if it was a contrasting agent (only because I’d read bout it) and she said it was. Before she gave me the injection I told her I felt thirsty. I was quite conscious of the fact that every time I gulped (because I felt thirsty) it could mess up the image. She said I could have a drink after the whole procedure which would only be a couple of minutes off. After she gave me the injection I felt a bit sickly feeling, and told her. She said there were no side effects to the injection. That kind-of made me feel better – but I still felt a quite whoozy. Anyhow, I was sent back into the giant donut, and I just tried concentrating on not feeling ill. I really should not have felt ill, I still don’t why I did.

The sickly feeling passed, as I concentrated on trying to sense where exactly the machine was targeting (as a bit of a game to try and pass the time). I thought I could feel a sense of a diagonal passing left to right at one point – coinciding with a sensitivity just under my eyebrows – but that was about it. I felt a mild bit of warming right to the back of my head (it felt). None of this felt unpleasant at all – if anything it was reassuring for me.

Anyhow, as soon as I knew it I was taken out of the magic donut and threw out my ear plugs, and went out of the hospital with my brilliantly supportive wife. I felt “odd” after the scan – a bit like you’ve been woken up at three in the morning and you’re not quite “with it. I got my wife to drive, and she took my up to Littleborough Lake for a bit of a treat, watching the ducks and geese on the half-frozen lake and to have a spot of lunch.

It’s taken the rest of the day to feel totally myself again after the scan. They do say that there are generally no sensations associated to an MRI scan, during or after. Well I’ve felt a little “shell shocked” or a bit “brain numb” for quite a few hours since. I’m not sure either if I’ve lost my sense of direction or not – I had an uncanny feeling of where North was before today – I’m not terribly sure if I still have it or not.

At the end of the day, it doesn’t matter one bit – the important thing is that my tumour today has been imaged, and on December 24th (yes, Christmas Eve) I’ll be finding out the extent of the tumour. I feel at last that I’m on the journey to being treated.

Meanwhile, I really fancy a donut…

Superhuman Giants – Acromegaly on TV

While channel hopping this evening, I stumbled upon a program that mentioned acromegaly (or strictly ‘gigantism’ when it starts before adolescence):

Superhuman: Giants
ITV 2 Sun 7 December 6:30pm to 7:30pm
“The world’s tallest people discuss their lives, relating poignant tales of triumph over adversity and revealing how the simplest everyday tasks can turn into daunting challenges. While some manage to cash in with lucrative personal appearance fees, others find it difficult to make a living, find love or travel comfortably. Perhaps strangest of all is the story of a giant who believes he is more than 7ft tall, but discovers to his dismay that he seems to be shrinking rapidly.”

Can alcohol suppress Acromegaly?

I’ve been doing a bit of online research (that’s a posh name for “Googling”!) to see if there is anything dietary or otherwise that would limit the impact of Acromegaly.

I’ve being going along the lines of what would stunt the growth of a growing child. I remember that smoking causes stunted growth, and so does drinking under age. I’ve not been too sure if both of these are “old wives tales” to stop children smoking and drinking, so I thought I’d look them up.

Well, interesting results. Not terribly sure if I fully understand the mechanisms, but yes it does appear that alcohol consumption (Google for: Ethanol IGF-1 IGFBP-1) does reduce IGF-1’s bioavailability (in other words it’s effect) according to some studies (that’s if I’ve read it correctly – surely I’ve not). Double the “drink-drive” limit could suppress the effects of IGF-1 for up to 24 hours.

http://www.isbra2006.com/abstract/26.htm

http://cat.inist.fr/?aModele=afficheN&cpsidt=1339648

Please don’t take my word for it, and especially don’t take this as advice to drink! The beneficial effects of alcohol no doubt are swamped by its negative effects, physically, mentally and socially.

It does also make one wonder how many chronic alcoholics that may escape the detection of acromegaly.

Cheers!

Decided – Going to Christie’s

After my consultation two days ago, we’ve decided (my lovely wife and I) that Christie’s Hospital is the best decision for referral (based on what I’ve been told) for me with my condition in the area that I live in. I would have much preferred going to Manchester Royal Infirmary as it seems a lot less threatening than Christies (for whatever reason). I made the call to the hospital and told them I’d like to be referred to Christies. There we go, decision made. Scary stuff – I still wish I’d chosen Manchester Royal Infirmary.

Morning Blood Test

I drove to hospital this morning.

I paid to park up there. Nice.

Bought a newspaper, and found my way to the “Blood Test” bit after asking a big friendly chap called Bob.

It was a “Delicatessen” system where you had to take a number from a ticket machine, with an LED display with two large digits. (Over fifteen hours later, now I can still remember it being number “50″).

A “boing” sound emanated from the display and the numbers “50″ showed up, and realised it was my number – whoohoo!!! I was very surprised to see two other men in there with needles up their arms and little things of blood being filled up. I went quite “girlie” about it really I suppose, and tried not to think about it – but the nurse picked up on me being not exactly happy about it and was concerned for me. Showing just a bit of concern made me feel even more “girlie” (sorry ladies – but you must know what I mean, and gents I’m sure you know what I mean too!).

“You’ll feel a slight scratch” (WHY DO THEY SAY THAT?). I felt a blinkin’ needle going up to my arm, not a scratch. Ouch. It wasn’t as bad as I imaged though. My imagination is quite vivid at times.

The two other chaps in the room just looked like they were sat there having a hair cut or something. One chap was looking at his vial being filled up, the other younger chap was just looking quite cool in front of him. I suppose I looked like a sheep being startled by a pair of headlights to the other two.

The nurse at this point said “Are you OK?”. I tried to smile and replied “Yes, I suppose I’ll have to get used to a lot of these”. I was trying to be funny, but as soon as I said it, a I felt a “frog” in my throat as I suddenly realised what I was really saying. I really will have to get used to blood tests, won’t I?

Anyhow, I drove straight to work today. Having a blood test is not all that bad after all!

First Visit to Specialist

I had my first consultation with a specialist. I took my wife with me too and it was great to have her with me. The doctor I saw was quite a young gentleman, but he had a great manner. Near the end of the consultation, he brought in another colleague who explained that they would refer me with their preference being to Christie’s. I explained that I had been told that a person at Manchester Royal Infirmary had been recommended to me by another acromegalist. I felt a bit reluctant to be referred to Christies because of its association with cancer treatments and I had a perception that they would be very pro-radiotherapy (which can result in very poor quality of life due to hypopituitary effects).

They asked me to make my mind up by the end of this week. I think I may as well go with their recommendation of Christies. The main consultant there has written numerous papers on Acromegaly, which gives me a greater confidence in available treatment options.

While I was there, I had chest X-ray and an ECG (told ‘unofficially’ that there was nothing to worry about on my ECG).

The male doctor gave me a card for blood test, pretty much ticking a number of the boxes, and adding on all the hormones. He had intended for me to have the test done straight away. I suggested that an overnight fast might be better as he was also testing for Cortisol – I explained that I believed that it was excreted around 4am (or so) so an early morning test could be better. He then agreed.

(I’m sure doctors hate people like me that only know half the facts. I’m studying Greenspan’s ‘Basic & Clinical Endocrinology’ which makes some interesting bedtime reading. Things make a lot more sense now.)

He said there was no point in doing an Oral Glucose Tolerance Test for GH as my IGF-1 value had been so high. I suggested that we should do one for completeness, but by that time he had enough of me I expect and didn’t book me in for one. If I’d had a patient like me, I’d have done the same!

Acromegaly Blogs

I’ve added the following Blogs of other people with Acromegaly – it is so very helpful to read of other people’s journeys with the condition:

• Acromegaly Bloggers
• Acromégalie French
• Alden
• Alecia
• Almu
• Amptoons
• Amy Turman
• Andy
• Brain Talk Community
• Chantal
• Cindy
• Craig Knier
• Ellen
• Jason C. Roach
• Jenny
• John Carvalho
• Jon Hardie
• Julie S
• Ken
• l’Assomegalie (French)
• Mike Muir
• Miss Magpie
• Murni
• Omar
• Paul
• Princess
• Stephanie (Dutch) translated
• Susana Moreno Ramos (Spanish) translated
• Valsor Lawbbyist

First Pituitary Support Meeting

I went to my first pituitary support meeting this morning. It was good to meet everyone, they were great! I was half expecting to be shocked by what people might have looked like, but was pleased to see how normal they were really. It was quite reassuring too to meet others with acromegaly who had a similar “look” to me! An extended family no doubt.

One person was overly gloomy though, which could have really upset me if I had a different outlook. Understandably after many decades of suffering with the condition. “You will need injections until you go to your grave”. “There is no quick fix”. “You will have so many tests, scans and injections”. “Some of your disfigurement will not return to normal”. All true to a varying extent. I already knew the prognosis and treatment for acromegaly, by going to the meeting I just wanted support and encouragement. I can only assume that the words were a bit of a reaction to my quite positive and generally jolly outlook to the whole thing, and the person’s many years with acromegaly.

I got a lot of encoragement from little conversations, which was brilliant. It’s great to know that there are others to speak to each with their own journeys which I can learn from, and hopefully in some way I perhaps may be of encouragement to them too in turn in the future.

I’ve been invited to a meal with the younger pituitary group on Saturday 13th December, which is brilliant, I’m really looking forward to it. It’s a day after my MRI scan too!

First Pituitary Support meeting tomorrow

I’m going to my first Pituitary Support group meeting tomorrow. I’m a little apprehensive, but I feel I have to go really.

The reason I’m a bit concerned is that meeting others might give me worries about my condition that I don’t have right now.

Different people deal with things in quite different ways. Perhaps the people who are really well after acromegaly don’t attend these kind of meeting after all. Who know.

I’ll go tomorrow anyhow and see how it goes.

Prognathism – Eating spare ribs isn’t easy!

I bought a portion of ‘Spare Ribs in OK Sauce’ from our local chinese. I found it difficult to bite the meat off because my lower teeth are now infront of my top teeth, so they don’t meet up properly. It’s called prognathism apparently. 

The good news I suppose it’s a way of losing weight.

Dental X-Rays Show Jaw/Teeth changes

Dental XRays of my Acromegaly

(I have added red and blue lines to the x-rays to show the predominant direction of each tooth on the lower jaw)

I went to the dentist last week, telling him that it seems that I have Acromeglay, and asked him to X-Ray my teeth. The last X-ray was taken five years ago. I am suffering from overbite (I think – my bottom teeth are a bit in front of my upper teeth), so biting things isn’t quite as easy as it used to be.

He took an X-Ray, and there was nothing obvious to see on the computer screen from the one taken five years ago. He was very helpful, and said he would refer me to the Dental Hospital in Manchester. I asked him if I could have a copy of my X-Rays of 2003 and 2008, and he very kindly said he would.

This evening a little envelope dropped onto our doormat, and in it was a little note from my dentist, and a CD with the two X-Ray images. What a lovely chap! At first glance there is no obvious difference. On very careful examination some things start coming to light. My lower jaw has grown a bit, and the roots of my lower teeth have started growing apart. The tops of the lower teeth have grown apart only a little. The net affect is that the angle of my lower teeth has increased from the vertical.

In a strange way. I’m really quite excited that I’ve spotted the changes on an X-ray! The more I understand about the condition, the less I feel it’s ‘beaten’ me.

The Results – Bonfire Night – Bombshell

I’d asked my doctor to phone me, as I’d not heard any results for my IGF-1 value.

I was driving at the time, hurtling down the motorway, not far from our town. A few isolated fireworks were going off, celebrating ‘Bonfire Night’. I answered my handsfree carphone. It was my doctor. I was so glad to hear from him.

The conversation started off a bit strange, because he’d asked his secretary to phone me with the results while he’d been away a few days. She hadn’t rung me. Understandable because the doctor surgery had moved to a new building over the weekend.

He then explained to me that my IGF-1 value was off-scale. Without a pause I just said “that pretty much means that I have acromegaly then”. He said it would suggest so, yes, but I’d need to see an endocrinologist.

To make light of it, I then asked him about the recent move of the health centre and he said that it was the first time he’d been there this evening. They had a bit of fun trying to get into his room, not being able to find the keys at first. This made me feel so much better just imagining the more practical day-to-day matters of being a GP and just having a little glimpse of what must happen in surgeries. It took the edge off the news, and I’m very grateful for his call.

I went home, and told my lovely wife. We went out, drove around a bit to look at a few fireworks, then came home, closed the door and both sobbed and cried our eyes out.

Second Visit to Doctor

I went to see my doctor today, hoping to get my blood test results. Unfortunately, the Growth Factor (IGF1) result hasn’t come back yet.

While I was there, my doctor found that my cholesterol is getting high (HDL 1.6 mmol/L, LDL 4.2 mmol/L). He suggested I perhaps reduce the number of fatty meals. He was very good about it, saying it was a bit of a case of “Do as I say, not do as I do”, with a big smile.

Anyhow he took a bit of blood while I was there (quite painless really) to check for calcium levels or something (I can only assume that is something to do with bone growth in acromegaly?).

Anyhow, a bit more waiting.

First Blood Test

Had my first blood test today to test for Acromegaly. The door of the medical centre was locked, so I had to knock until somebody opened up. My doctor had told me yesterday that the earlier I could get there the better as my “Insulin-like Growth Factor” first thing in the morning would be able to tell him more than later on in the day.

The nurse took some blood, she was very quick and it was quite painless. I was told I’d get my results in five working days. I then went off to work.

Visit to the Doctor

I went to my doctor today with a carrier bag with an old pair of my shoes in it and a few photos of myself and explained that I could have acromegaly and could I please have a blood test for it. I explained what my sister had observed in me, and now a few things made sense.

I naively asked just for a ‘growth factor’ test (not fully understanding it!). I’d already booked an appointment with the nurse to have a blood sample taken for the following day, anticipating the doctor would require a blood sample because otherwise there would have been further delay.

My doctor has never had a patient with Acromegaly, although he said he did have one patient who he had tested for it, but it turned out not to be (lucky them!). I’ve very thankful to have such an understanding and switched-on doctor who was good enough to listen to me.

After all, it’s not every day somebody comes in with a carrier bag with old shoes that don’t fit and a selection of photographs! I just hope that everybody that suspect acromegaly has such a brilliant doctor!

Not an ugly sister – but I’m an ugly brother!

We went to see my Mam and Dad last Sunday as it was Mam’s birthday. It was lovely to see them. We were also fortunate to see my sister and my younger brother too.

We hadn’t seen my sister for over three years, since we got married (married that is, to my wife, not my sister!).

Anyhow today, Mam rang up and told me that my sister thought I’d quite dramatically changed in appearance and she suspected I had Acromegaly. Apparently they looked at a load of old photographs out of me and started comparing them. My sister works as a beautician, and one of her customers had the condition so she knew what to look out for.

I’ve searched on the internet and a few things have me suspecting that she may well be right.

Feet Have Got Bigger

My feet have got wider, and earlier on in the year I struggled finding trainers wide enough for me. In the end I bought some from “New Balance” who have lots of wide ones. What I found really strange was getting into my safety boots after not wearing them for a bit to find them uncomfortably tight. In the end I bought a new pair of safety boots. Two years ago they were UK Size 9. This last month, my safety boots are UK Size 11.

Tingling in my Hands

I’ve noticed that from time to time I get a bit of tingling or numbness in my hands, nothing serious or anything, and it goes at quickly as it comes.

High Blood Pressure (Hypertension)

I’m on medication (Ramipril) for high blood pressure.

Watery Eyes

I now and again have slightly watery eyes, especially when I have a meal. I’ve even asked my optician about it, but they can’t offer an explanation. A few people on http://www.acromegalysupport.com/phpBB2/ mentioned having watery eyes, although this is not a listed symptom of acromegaly as far as I know.

Facial Changes

Now they mention it, I look like I’ve aged quickly.

Otitis Media ‘Glue Ear’ (blocked Eustachian Tube – Ear Grommet fitted)

I had a bit of trouble hearing, almost three years ago, and had an ear grommet fitted to my left ear. I’m not sure if this is related or not, but I got the impression that the condition is quite common in young children, but not in grown adults. Despite the fact my ear grommet is now gone, I still have similar problems with my left ear now and again. I just put it down to being married! ( hee hee).

No Other Symptoms

So, looking at the symptoms list then:

• coarsening of facial features – Apparently, yes.
• enlarged hands and feet – Feet have grown, yes (fingers seem to have been chunky for ages, my wedding ring still fits fine)
• thickening of the soft tissue in the palms and soles of the feet – same as above I think?
• Carpal Tunnel Syndrome (tingling feeling or pains in the hands) – yep, now and again, not much though.
• excessive sweating and oily skin – NOPE
• headaches – NOPE
• vision disturbance – NOPE
• Sleep Apnoea - NOPE (was tested for it two years ago), but do snore a lot!
  
• general tiredness – NOPE
• irregular periods or loss of normal menstrual function – adult females – NOPE (I’m a man!)
  
• impotence – adult males – NOPE
  
• reduced fertility – POSSIBLY YES – have been trying for children for three years, on the IVF waiting list, although my sample shows everything within range.
• decrease in sex drive – NOPE