After my second blood test I heard nothing! So I rang the endocrine nurse and blagged my test results. I was still way over the accepted level but around half of the first reading.
OK - what now? Well I didn't get any advice from the hospital for the next couple of weeks. In the absence of official words of wisdom, I halved my testosterone gel use - until the can ran out - at which point I couldn't be arsed any longer. Rubbing jelly over your body is only fun when you're in your twenties, in love and prepared to get messy experimenting. No more standing around in the mornings waiting for the sticky patch to dry up before putting on my clothes for me.
So I took a calculated risk guessing that when the hospital did get back to me, they would give the same advice. Well, they didn't. Get back to me that is! So I chased them like a ferret chasing a prawn up a trouser leg. Eventually, after a careful 30 second assessment, they decided that I should stop taking the testosterone gel and take more blood tests after a week or so.
Testosterone has done some great things for me over the last few months. The effects peaked after one month I would say but generally it's been positive all round. I'm not impressed with the extra hair that has grown all over my body (especially up my back - starting from my arse). I do like the extra muscle tone and the general feeling of well being - and also the fact that my arms don't get tired if I hold them above my head for more than two seconds.
Let's hope natural production of the hormone has returned and I can concentrate on getting rid of that ugly lump from by bonce.
My next consultation has been helpfully moved back in to October. The letter came with a stern reminder of the cost to the NHS that missed appointments bring. I would like to remind them that it's a two way thing and to stop casually rearranging my consultations like they're a lunch date to discuss the contents of the Argos catalogue.
Tuesday, 21 September 2010
Saturday, 26 June 2010
I'M ON FIRE
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.
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.
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 .....
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 .....
Wednesday, 26 May 2010
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.
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.
Sunday, 23 May 2010
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.
Friday, 14 May 2010
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.
Wednesday, 5 May 2010
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.
Sunday, 2 May 2010
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.
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
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