2 Years On - Return to Cabergoline

I didn't last on Quinagolide. It wiped me out.

After a discussion with my consultant, we decided to revert to Cabergoline. In conjunction with specialists from Oxford, it was agreed that radiation therapy & an operation were not in my best interests. Apparently the tumour is spread out in all the wrong places.

Operations carry risks & they couldn't guarantee they would be able to get to all of the tumour. In addition, the radiation would likely cause me complications later in life - and I'm too young for that (I took that to mean increased risk of cancer).

So my options for twatting (British technical term) this tumour are running out it seems.

All this was in the 1st quarter of the year.

So the strategy has been to run with an increase of Cabergoline - but no large doses. Smaller, more regular amounts in an attempt to finally flatten the blob in my head.

I'm not entirely convinced this is going to cure my problems though. Why?

* My prolactin has dropped from 203,000 -> 3000

* Testosterone is being regulated & monitored and the levels have been good so far.

* I'm still utterly wiped out.

It's the Cabergoline right? Well, I eased off the drug for a period & had no corresponding boost. So now I'm left confused. I dropped right back from about 4 pills a week to 1.5. When I first started the regime I was taking 2 pills and coping.

Current issues / symptoms -

* Awful physical fatigue - my body aches. Even after a good nights sleep. We recently had a hot day (it does happen from time to time in the UK) and *BANG* I was gone.

* I can do the smallest physical activity and the cost to me is massively exaggerated. I call this the 'mow the lawn' test. If I can mow the lawn and not be wiped out for days, I'm in a fit state. Right now, I don't have the energy to mow my face with a razor.

* I have muscle weakness. Hands and forearms in particular.

* My muscles are stiff and I'm starting to walk around like an 80 year old with a bad case of piles.

* Mental fatigue. I can 'just' manage work. After work, I have no energy to think about any of my other projects.

* I'm doing odd things during work. I'm typing things out and then reading it back and finding it either doesn't make sense or I start writing word A and word B comes out.

* I've had some confusion issues with problem solving & organisation.

Maybe these are side effects of the medication and tumour. However, in my heart of hearts (what the hell does that really mean - what a weird saying) I'm starting to think something else is going on here. It's going to be a struggle working this out. My doctor and consultant will blame EVERYTHING on the prolactinoma between now & death. If there's another condition causing this fatigue, it's probably going to be missed.

So - two years on and I still feel like a bag full of spanners trapped under an elephant's arse.

Happy days.

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