Saturday, 26 June 2010


Just a quick point about this post. When I first found out that I had low testosterone, I wanted to know what testosterone gel would be like as a treatment. How would it change things for me - magic elixir or snake oil claptrap?

The first thing I found out was that searching for good information about testosterone on the web is a nightmare. The association with sexual potency and body building masculinity means that for every good page of worthy information you stumble upon - you will find 99 sites of worm ridden filth and / or sites trying to sell you something. The inability to filter out sites that would sell you your own fart for a dollar is really kiling 'search' for me these days.

So I vowed to share my experiences purely to help someone else in my situation. At this stage, prolactinoma wasn't factored in to the equation. It's a funny journey but it's come full circle now. You will see from the last blog, a small amount of pleading about my fatigue inspired my consultant to prescribe testosterone gel. This is blog post is about how I've been getting on with it.

Well- it ain't straight forward.

Running on low testosterone for so long is paramount to being bled to death over a long long long long time. The process happened so slowly to me that I didn't notice something was wrong until I found that i could barely lift my arse out of my seat. From that lowly position, application of testosterone gel was only ever going to produce a predictable surge.

The gel itself is quite similar to the evaporating alcohol hand rub that seems to be ubiquitous these day. In fact, it was mighty tempting to substitute the contents of a can of Testosterone gel with the hand gel at my mother in laws house. Naturally I would confess to my meanness over time .. probably just after her voice had broken perhaps. The conformist in me forbade such irresponsibility and I slapped it on myself instead.

This was my new daily routine. After showering and getting dry, I would need to alternate daily between rubbing the gel in to my stomach or my inner thighs. I was expressly warned by my consultant not to apply it to my nuts. Then I would wait three minutes for the stuff to dry off - after which time it would be safe to put some clothes on.

So how quickly did I get a hit from the hormone and how did it feel? Well, after three days I was feeling certain about the positive effects and after a week everything was in full swing (yes everything). The changes were quite stunning. Better mood - happier, more optimistic. Energy levels returned and I found that I wanted to do things rather than sit on the couch. Playing with the kids was no longer the effort it had previously seemed. On the negative side, I now had to spend the first five minutes of every day sitting in bed thinking about the war in Afghanistan before I could stand up. Welcome back to the wonderful world of men.

After a month, i was more active than I had been in the previous 5 years. I took up cycling - did floor exercise - got stamina and muscle tone back. Mental acuity returned and I felt sharp and able to make clear decisions once more

It really did appear to be a panacea - for as long as it lasted.

Around two months in, it all went pear shaped again. About three days after the briefest of chats with my consultant telling him how wonderful I felt I suddenly crashed. I was tired once more. not as tired as before but still not right. My mind began to grind in a slower gear again and the grouchy nature revisited my puny life to recommence spewing its negative diatribe over anything that passed within a 10m radius.

How the hell could this happen? I was rubbing in the magic gel wasn't I? Could it be that I needed more gel? Had my nuts failed entirely now that testosterone was pouring in through the epidermis at around 7am every day?

Surprisingly, after a routine blood test, I received a letter from Dr A. It advised that a) Although the prolactin levels had reduced further (6000 odd), I was still way over the acceptable level. It was then requested that I up the Cabergoline frequency to 'three times a week'. OK, perhaps it's not been as effective as they hoped but it's a small issue to take one more pill a week.

b) The second point that was made in the letter was regarding testosterone levels. Surprisingly they came back showing that I had twenty times more testosterone in my blood stream than I should have.

Could this be why I feel so unstable and out of whack?

The letter made a further point that perhaps the blood was accidentally contaminated directly with my testosterone gel. My guess is that it wasn't but I had to accept the possibility. A further blood test was requested to clarify the matter.

On the 2nd of September I had more blood carefully taken. I made sure that the arm used had not been exposed to the gel. If the results of the second blood test are the same then the doctor will likely withdraw my t gel on the assumption that my body has had the mother of all rebounds.

The other possibility is that my body is not removing testosterone accumulated in the body at a fast enough rate and that over time, I've poisoned myself as a result. Liver issues perhaps? I guess I'll wait to see the results from the consultant.

Wednesday, 9 June 2010

Checkup Time - In Front Of A Live Studio Audience

Right ... I'm going to write this quickly tonight!

I had a follow up appointment with the consultant today. Firstly I was weighed and my BP was taken (93 / 53 .. pretty low but apparently that's just me .. hmmm).

So my consultant, Dr A, takes me through to his office and explains on the way that there will be a few people with him. Apparently there is a 3 monthly session held at the hospital where anyone with a vested interest in the subject turns up. Including the head of department, trainees and the regional specialist from nearby Oxford.

I walked in to the room - there was Dr A's desk and a couple of chairs next to it for me and my wife. Behind him were six of these people sitting watching the consultation. It was around this time that I was glad my issue was prolactinoma rather than piles or prostate (any bloke who's had a prostate check knows how bad this would be in front of an audience).

In summary, I was told the following:

- Prolactin levels have dropped from circa 200,000 ng down to 9000 ng. Still about 20 times higher than the target but a massive improvement. The drugs are working.

- There is no point in operating unless the drugs stop working. Operations come with risks and are unlikely to clear the issue totally so there is a likelihood that I would still need drugs after the event. Most likely scenario is that I will take Cabergoline for the rest of my life but at a reduced dose. Cabergoline is most effective because it hits every prolactin producing cell.

- My visual field test came back positive. I had taken this the day before but not blogged about it because there isn't much to say. I got called in to a room, stuck my head in a box and clicked a button every time I saw a dot flash somewhere. The good news here is that I'm not going to be told to stop driving. In a way this is a shame because I had been offered a day out driving high performance sports cars as a reward for hard work over the last year. I turned it down because I couldn't guarantee that I would be medically road worthy. Arse! I had always wanted to drive a Ferrari. I consoled myself by imagining that they rev limited the cars anyway!

- The bone density scan came back with warnings. The bone is getting thin, especially in my lower back. Just as well they caught this when they did then because the last thing I want to see is that crumbling away whilst I'm in my thirties.

I think the 'gang' of doctors in the room were pretty pleased with progress until I opened my mouth and dragged them back to the very beginning. As far as I was concerned (and still am) the lump in my head could be the size of a grain of sand - or an ostrich egg - I don't care. I told them this. My issue from day one has been the punishing physical and mental fatigue that has blighted my life day in day out for the last few years. And it's not just this either. My character has changed from easy going - fun loving guy to outright irritable arsehole. This has to stop.

As Roy Batty realised that he was fading from this world, he fought and kicked - and he screamed the immortal words "I want more life fucker / father" (depending on which version of Blade Runner you happened to be watching). Well I'll have some of that if you don't mind. The medical profession were coming from a 'Sex Pistols' point of view - kind of 'Never Mind Your Bollocks - Here's the Prolactinoma'. I made it clear - I have no intention of sitting on my hands waiting to see if my Testosterone level finally floats back up to an acceptable level.

'The Gang' were remarkably sympathetic and prescribed me some Testosterone Gel straight off the bat. It will mean periodic blood tests to see if I need to keep taking the stuff but if it helps me climb out of this fog ridden pit, back up to the sunlight then it's worth it. I was given strict warnings a) Not to rub it directly on my nuts as it's alcohol based and could hurt. b) Avoid transferring the stuff to my family - directly or indirectly. Yeah - I get this! The last thing I want to see is my wife or my boys (3 and 1) running around with facial hair and deeper voices than me.

Next appointment is in three months time!

Now then, could I find a pharmacy that sells the testosterone gel I had been prescribed? No .. surprise surprise! I'll have to wait a day for that to turn up. Naturally, the effects will be something to blog about.

Monday, 7 June 2010

Who the hell calls a drug CABERGOLINE?

19th May - 7 June

The frail and poorly little chickens who end up with an unhealthy dose of Prolactinoma will eventually end up with drugs of some sort that will reduce the tumour. Quite early on , my GP indicated that I would end up on a drug called Cabergoline (which appears to be the generic name for Dostinex).

I put my prescription in my wicker basket and skipped down the yellow brick road to the nearest pharmacy. They gladly took the prescription and asked me to pay up front - only then to find that they didn't stock the drug, telling me I could wait until the following day. Errr .. no! A quick refund and a trip to ASDA and .. they also didn't have the drug! Third time lucky - Boots (the chemist) found it under the brand name and managed to dispense twice the amount that the prescription had asked for. Well done Boots - I didn't even have to cash in my reward points.

One of the things I've been curious about is what it's like to take these drugs. Will it be like taking smarties and completely painless? Or will I spend half my time face first in the crapper!?!

Well, for me, it's been like this.

Wed 19th May - Take my first pill in the evening (started straight on 0.5 mg)

Thursday 20th May - Fine until midday - at which point my head spins and I spend a lot of my time resting my face on my laptop keyboard at work.

Friday 21st May - Seemingly fine all day

Saturday 22nd May to Wednesday 26th May - *cry* To be honest. I couldn't believe it! Nausea - dizzyness - more nausea. Those days were great days for lying flat on my back! A great way to lose weight as well as I was damned if I was going to sit down and have a Sunday roast in that state. Now! Caveats apply here. I suspect that it was the Cabergoline but there is no real way of knowing. I have two very young kids in the house and they have a great track record for bringing home bugs and passing them to Daddy. If you're on Cabergoline though - at least you can contrast and compare with my own experiences and make up your own mind. Around the 25th of May I spoke to my consultant who advised that if the nausea didn't subside, I should consider dropping back to 0.25 mg for a week. As I felt I was turning a corner on the Wednesday, I stuck with the full dose.

Thursday 27th May - Monday 31st May - Okay. Firstly the sickness passes. This is great because almost a week of moaning about sickness has bored me to tears. My poor wife must be fed up of my 'pity me' bollocks by now. Then for two days, I feel utterly fantastic. The kind of 'grrrrrreat' that falls out of Tony the Tigers mouth when he's trying to flog you a box of sugar saturated corn flakes. Could the drugs be working already? Is it just up, up, up (in more ways than one) from here? Well that 'high' lasted two days and so far has yet to return. For the remaining days of this period, I returned to the normal subdued 'me' just without the afore mentioned head spin.

Tuesday 1st June to Thursday 3rd June - 10am every day I slip in to a fog. Concentration goes out of the window and you can forget getting me to a) make any decisions - b) evaluate anything technical - c) follow the thread of any conversation - d) get a joke or remember the punchline - e) remember where I put my phone - f) remember where I put my phone again - g) WHERE THE HELL DID I PUT MY DAMN PHONE!!!

Friday 4th June - Monday 7th June - Fatigue has returned. From the moment I wake up to the moment I crash in to bed, I'm a dead weight. Limbs ache all the time. Around lunchtime I'm scuffing my feet across the floor. Mentally I'm wiped out also. I'm falling asleep all over the place (in the bath yesterday - in the waiting room at the hospital today as I waited for a blood test). The worst thing about this - and the last six months really - is the guilt. Guilt that my poor wife ends up having to pick up the slack. Sickness and Health? Better or Worse? No dammit! She deserves a break. It's only been three months since she had her left knee rebuilt after dislocation problems. Now she's running around wiping my arse for me. I owe her one.

This week I finally get my visual field test - and I also get my follow up consultation with endocrinology. I'm in half a mind to beg them to sort my hormones out and fix the damn fatigue. Perhaps I'll handcuff myself to a nurse and swallow the key .....