17th May - Two Tests

I returned on the 17th back to the Osprey ward at the Great Western Hospital. They were running tests relating to cortisol (something called a Synacthen test ).

If you really can't be arsed to click the link and read all about it (and I appreciate life is short so why should you) - basically I get jabbed in the arm with something to stimulate cortisol production and then they take samples of blood over time to see if my body it reacting as it should. It takes around 2 hours. Lucky for me, I have a good 3G signal and the department don't care if I surf the web on my phone just as long as the thing is on silent. I sit there reading up about robot building :P

With everything going on over the last few weeks - and the root cause being so unexpected, it's easy to become precious about the condition and become self centred. Yes, I've been exhausted and fatigued for so long now that I can't remember what it feels like to be normal ... and the prolactinoma with it's prospect of visual impairment and leaking spinal fluid sounds very frightening .. but is it THAT bad?

Well ... as I'm sitting there reading about how to wire up Metal Mickey, a lady sits in the chair next to me. She seems friendly and we get chatting. I offer up the fact that I have something growing in my head .. she tells me about the terminal breast cancer she has and the drug she's taking to avert bone tumours. There .. the prolactinoma is quickly put back in its place. It's sobering no?

Other than that, all I can say is that I got two free cups of tea out of it! The test eventually came back with a good result - which would show that I still have some pituitary function and it's not all doom in my bonce.

I collect my perscription for Cabergoline on the way out of the hospital - although I have to wait a couple of days before I can start taking the stuff. I'm sure that's going to be a joy.


19th May - OAP Bone Scan Shocker For Young (ish) Man - Currently Bent Out Of Shape

I got called in to the hospital for a DEXA scan. This is essentially a bone density scan which involved something like a star trek scanner moving up and down my less than he-man body. In my case they scanned my lower spine and my left hip. Why? Because low testosterone over a prolonged period can cause osteoporosis! Let this be a warning for those of you who like to go commando - you need to pull your trousers down for this scan. You may well have low testosterone and your love missile may be missing its ability to deliver a payload - but it's still there - and the old bird operating the scanner may not be pleased to see your bowyers unwrapped!

I'm concerned about this just a little (the scan not the commando bit) and I'll be keen to get the all clear. No results yet.

It's a quick job and before long I'm in the car heading back down the M4 to work.

14th May - continued

I turned up at the hospital accompanied by my wife and reported to the Osprey ward - eventually we were ushered in to a room and met with an endocrinologist (hormone specialist). I'm asked all the usual questions about how I got here - how was I feeling etc. This was followed by slightly painful discussion about whether my cock would stand to attention and under what circumstances.

Eventually we got round to talking turkey.

Just how high was my prolactin reading? - A normal level is circa 500 (assuming ng) mine came in at 202,000. About this time, I expected Roy Castle come back to life and start playing the trumpet.

Had they found anything in my head? Yes! I have been diagnosed with a macroprolactinoma 3.5 x 3 cm. It's wrapped around a carotid artery - pushing in to the optic chasm and invading the sinus region behind my nose. This is the root cause of my testosterone failure so I now need to make a public apology to my nuts. The pituitary gland has a major role to play in body chemistry and being squashed by a tumour has done little to help it get on with its job.

Is it going to kill me? No. But it will cause problems if not dealt with. Aside from the fatigue I've been experiencing, it could impair vision (optic chasm). Also, the point about the sinus also comes with complications which I'll explain.

I'm going to be given Cabergoline - a drug which should shrink the tumour (in 80% of cases I understand). If the tumour has truly invaded the sinus region, when it shrinks, it will unblock the hole it's made and I'll end up with CSF (brain fluid) peeing out of my nose. I've been given a phial to carry with me at all times and (I kid you not) should fluid start coming out, I have to collect the stuff - walk in to A and E, get some antibiotics (to prevent meningitis) and then prepare for some kind of patching operation.

Hmmmm

Further to all this, I've got various other tests to take. Bone density (because prolonged lack of testosterone can cause osteoporosis apparently) / ECG tests to make sure my heart is fit for the treatment I'll be receiving / I'll also be getting and further visual function tests and a cortisone test. I should get myself a secretary really to keep my diary!

OK .. I'm lacking any comedic twist on pretty much any of this at the moment. I'm actually writing retrospectively though - my next entry will cover the events 17th May which put my problem in to perspective.

For the record - looking at the MRI scan was fascinating. The blob looked ugly though. I'm thinking of giving it a name so I can strike up a dialogue with it and talk it out of my nose. If I can get my hands on the pictures, I'll post them on this blog.

14th May - 9am Wake Up Call

14th May - 9am Wake Up Call

9am and I'm playing with my kids as we all get washed . changed and ready for the day. The phone goes. It's the hospital. Can I come in today please and meet with the consultant at 3:30 pm. Just like Obama - 'Yes we can'.

That was quick. Either the hospital have a government target to hit .. or they've found something worth dragging me in for.

I will edit this with the results of the meeting later today / tomorrow.

13th May - MRI Scan for a man called Dan

13th May - MRI Scan for a man called Dan

The hospital didn't hang around too long before getting me booked in for an MRI scan - which is just as well because I'm an impatient SoaB. Appointment time - 8am.

If the doctor is right, they will find an adenoma .. or more accurately a prolactinoma. This will explain the chemistry issues that have caused extreem tiredness, lethargy, general apathy toward everything that isn't a life or death matter. A small part of me feels grateful that they've found 'something' because I was beginning to think that I was becoming what we here in England call 'a lazy arse'. The only other explanation being that my couch had formed a gravity well with a fixation for my backside!

With any luck something will be found (otherwise it's a witch hunt to find the cause of the issues) and it will be an ickle bump on the pituitary that we can flatten with a barrage of pills. I've trawled the net and found lots of people with tumours around the 5mm mark that have caused these kinds of issues - and that is my best hope at the moment. Worst case, there will be something egg sized, in which case this blog will lose the comedy element and I will be looking for volunteers to undertake a 'Fantastic Voyage' like adventure around my insides and zap it with a ray gun. Steady shooter only need apply.

When I turn up at the Great Western Hospital at 8am sharp, I'm asked to complete and verify a questionnaire to basically confirm that I'm not over 33 stone and carrying any metal items! Fat? because there is only so much weight the MRI trolley can handle I guess. And metal? Because you don't want loose metal object hanging about next to the magnetic forces that the MRI scanner will generate. They were even worried about previous metal splinters I may once have had!

After being taken in to the MRI unit and putting everything in the locker, I had to sit for a few minutes and listen to the scan operator bollock the cleaner for mopping the room unattended. I'm sure it was for his own good but I don't think the cleaner really understood the risks and I half expected him to react by inserting the mop (you can fill in the blanks here).

There's not a huge amount you can say about the MRi experience though. I was put on the trolley and given a set of 1970's cans to cover my ears. In my left hand was a panic alarm that looked like a sex toy from the same era. The trolley is loaded in to the scanner and I go in head first. "Don't move for the next ten minutes" says the operator as he legs it out of the scanner room.

Silence.

*Click click click*

Silence

*BUZZZZZZ*

Blimey .. it went on for double the length of time and the only way I can describe it is that it was like having my head strapped to a Vespa whilst being forced to listen to Blake's 7 at an incredibly loud volume. The hardest part is not moving. There is no gradient between silence and megaton magneto buzzing episodes and, quite frankly, it's bloody hard not to jump out of your skin. Towards the end the ear defenders are literally jumping up and down on my ears - I'm assuming in response to the magnetic fields.

Eventually it stops which is just as well because the novelty has worn off and all I really want is a cup of tea and then to be on my merry way.

Outside the scanner and the first thing the operator says to me is 'do you have a follow up appointment booked?' Hmm did I detect any urgency in that question - or am I just naturally being quite paranoid. Probably the latter.

I can see pictures of a brain in all it's MRI glory but they won't let me let close enough to see the pictures in detail. Apparently this is because I may accidently see another patients data - in which case they will have to kill me! Honestly - I ask you! I know where my pituitary is - and all I want to do is see how badly out of shape it is. This is far from the theme park experience I was expecting. Like Alton Towers - I thought I would get a framed snapshot of my face, twisted in horror, during the ride .. errr I mean scan. A T-Shirt and mug with a photo transfer cross section on my brain on it ... a CD with the MRI scan so that I could upload my brain to you tube and share the fun with my friends. But no! I will have to talk to my GP and pay some money to get a copy of the scan. that was all he would say.

About this point it occurs to me that I don't have a clue what happens next. Eventually I call the surgery who tell me to visit them in 10 days to discuss the results with my GP. Arghhh waiting! I want to know now! In fact .. I don't want to know now truth be told because I imagine no news is good news in matters like this.

Just for the record (captains log .. stardate etc etc) I've been feeling extra tired this week. I've also had a cloudy dull headache for the last three days. I'm assuming this is a psychosomatic episode brought on because of what they're testing me for.

When was the last time the doctor rang you?

5th May - Unexpected call

So there I am early afternoon trying not to fall asleep in yet another meeting about cloud computing. I'm beat by 12 O'Clock - the last thing I need is to go through a detailed technical meeting. My personal mobile phone starts ringing - the caller? The Doctor.

I spring up from the meeting room table and walk out - phone in hand. Outside the room, I take the call - all the while thinking 'What the hell could this be about?'

"Hello - it's Dr C here. Now .. I've had the results back from your blood test ..."

Wait? Results? Usually it takes a few days and I have to go to them .. and in any case, this time I wasn't even going back to the doctors for the results. They were just to be used by the endocrinologist as a reference for my consultation. The doctor continued:

"We need to discuss them - can you come in today please?"

Naturally I agreed and used it as leverage to get my arse out of the meeting about cloud technology (thanks understanding boss). What the hell could they have found out? I'll be honest, I crapped myself all the way up the M4 motorway.

My appointment was at 6pm.

The doctor advised, in a very tactful manner, that my prolactin levels were through the roof. This is a hormone produced by the pituitary gland in the brain. I'm not sure what unit the measurement is taken in - but apparently an average reading is in the low hundreds (he quoted around 200) - but mine was in the hundreds of thousands!!! I'm told the hospital ran the test twice just to be sure because it was so high. I'm not impressed .. prolactin helps women produce breast milk and I don't need it in abundance than you very much.

Here's where it gets tricky. Why would this be happening?

Well, the most likely explanation is apparently that I have a tumour on the pituitary gland. This would also explain issues that I've had with some very odd eye pain over the last year. It's unlikely that it will metastasise (like a spreading cancer) and will probably be a benign tumour - the size of which I will only know after I've had a brain scan.

When I started this blog .. I expected it to be 'nuts' centric .. not brain centric. That's the beauty of blogging. Twists and turns.

So the doctor is already talking about treating this with drugs but I guess this stance may change when the neurologist has taken his view. I'm expecting a call tomorrow from the hospital to kick this off. I'm not worried about this at all yet. Let's see what other crap they find whilst they're digging my garden.

What's the deal? (Tell me how you feel)

30th April - Results From the Doctor.

I love a visit to the doctor. It's always nice to go in after wasting everyones time in the lab only only to find out that I'm a healthy gazelle and there's nothing wrong with me. Well .. that's what usually happens.

Todays visit was different.

My expectation was a clean bill of health and that the constant tiredness was due to depression. As I sat down with the doctor I could see from the look on his face that he had something to say. He immediately queried my symptoms one more time and I repeated the whole 'flat as a pancake' routine again. Nothing had changed in that regard.

After this, he brought up the results of my blood test and quickly cut to the chase. "Well, it's no wonder really - as your testosterone levels are less than half of what we could reasonably hope for." He did mention the value but it flew over my head at the time. I wasn't prepared for what he said next - "I see you've had a testicular scan in the past .. I think we'll need another quick check today if that's ok."

Hey! I've known this guy for two minutes and he's talking about getting his hands on my nuts! The history of this is that I did indeed suffer from mild nut pain about a year ago and had the joy of someone scanning my bollocks to make sure they were cancer free (which they were). Now trust me - if there is one thing I can do on a daily basis and do well - it's check my nuts. In fact, that's what I told him. "No you're alright - I've checked my nuts and they're lump free."

I don't think he was expecting that response - and really it's probably very bad on my part - but tough. Think about it as I paraphrase his words:

"You've got all the testosterone of an 80 year old man ... now sling your nut sack in to the palm of my hand."

No no no no no!

Anyway, he accepted it and ordered an androgen test which meant giving more blood and then referring me to the endocrinologist. Hopefully this would clear up the root cause - I could slap on some gel every day and get back to having some fire in my belly.

4th March - Blood test #xxxx

I met the Phlebotomist to give some blood for the androgen test. Not much to blog about you would think - but whilst I was there, I got her to check my records and tell me what the scores on the doors were for the testosterone check. They were pretty crummy by all accounts - measuring at 4.6 nmol (usual range of 10-35). I calculated this to be around 133 ng.

All I can think about is getting a quick fix and getting on with my life with proper energy levels.

Introduction - 'Where has my Va Va Voom gone?'

Introduction

This is a blog about what it's like to be diagnosed with low testosterone levels.

This is going to be a quick and messy blog. I don't have time to paw over grammar and presentation. As it's about my nuts .. don't expect too many pictures either! I've started this blog because I couldn't find many first hand accounts of what it's like from a patient perspective. Perhaps someone will find it of use.

I'm a 36 year old IT professional. I intend to chronicle my experience so that other people can compare and understand.

Symptoms

This has been creeping up on me for months, possibly even years. It feels like my stamina began to ebb possibly even five years ago. A slow decent - slow enough not to be dramatically recognised - long enough to eat out the heart of the animal aspects of my nature. I first suspected something wasn't quite right about five years back when I was moving house. We had hired a 16 Tonne vehicle and I was doing all the heavy shifting with my Dad (who was around 50 at the time). I was keeled over trying to catch my breath on a washing machine - he was still going. Surely it should be the other way round? I found it hard to rationalise but put it to the back of my mind at the time.

Roll forward to the period 2008-2010. The slide became more pronounced. One major change happened. I became an asshole. How my wife put up with me, I really don't know. I became irritable and grouchy. Nothing was good enough and everything pissed me off to the back teeth. It became a lot of effort to do anything - I was just so tired. How did everyone else manage?

I've had my excuses. We've got two small kids and every parent knows what it's like in those early years. Sleep is at a premium. I took it that the disturbed nights were the root cause of my tiredness and new, snappy nature. I started to notice that when people greeted me with 'Hi, how are you?' my response was always 'Knackered!' .. because really, that's how I felt.

Libido? A long distant memory. I love my wife but sex was impossible with Mr Pinkie on permanent vacation. My spark had gone. I no longer showed real interest in doing anything creative or constructive unless I could do it with my arse planted on the couch.

Crunch time came in early 2010. My wife was having reconstructive surgery on her knee and I was left looking after the kids. I was totally bewildered by the experience. Yeah sure it was going to be hard because kids have boundless energy but I was feeling dead on my feet by 9am and the rest of the day was hell. A further noticeable slide in energy levels coincided with this event. Short of breath just from going up the stairs. Fatigue every day like I was recovering from a marathon. Muscles aching.

By now, my thought processes were in a real mess. Words were becoming hard to find and putting names to faces (when talking about actors or sportsmen etc) was a real hit and miss affair. When you're in a technical role, often customer facing - brain fog is not welcome. I can't begin to stress how much of an issue this has been.

My wife confronted me about the situation. "You're sitting there constantly telling me that you're wiped out and you always put off going to see the doctor. Everyone you meet - you tell them you're knackered straight away but you won't do anything about it. I think you have to face up to the fact that something is wrong and get yourself checked out!!! Besides .. I'd like some sex this year please!!!"

I though about it and suddenly it made sense. I couldn't remember the last time I felt normal. The last two years especially were a blur and at this rate - by the time I was 50, I would be going round in a mobility scooter.

I made an appointment at my surgery. The last thing I expected was to be taken seriously about being 'tired all the time'. To my surprise, he listened and decided to take bloods to test for a number of things - thyroid / blood sugar / count etc etc .. and also testosterone levels. He also warned me that it was possible that it was purely a depressive episode that would need to be treated with prozac (eek .. after a really bad stint in my early 20s with that damned seroxat product where I though the end of the world was happening, I was 100% keen to avoid more of that crap in my system).

Next - Results