Improvements?

I actually got a diagnosis of CFS in the end, along with some other issues, and have felt some improvement. I'm certainly not back to where I was before all this, but I'm not as bad as I was a year ago for example.

I'm also going through a very stressful time at the moment, brought on by the financial difficulties a long-term illness brings, but I hope that we'll be through that soon. Once I am through that I hope to start seeing more improvements in my health.

Maybe I'll start updating this again.

New site for Always Knackered

I've enjoyed using blogger / blogspot for this blog - after all it's a free service, it's got loads of features, and it introduced me to the world of blogging, but it's time to move on.

For the moment at least, I've got access to a site where I can use WordPress. WordPress allows me to change themes more easily, add and take away links without having to edit HTML by hand and just lots of other labour-saving stuff. Labour-saving stuff is handy when you're always knackered!

The new site is still called Always Knackered, and is to be found at http://alwaysknackered.sideiron.com - not that much different a URL to this one - http://alwaysknackered.blogspot.com.

I don't intend to remove this version of the site - it's still worth people looking through it, but I doubt I'll update it very much, if at all.

Thanks for reading, I hope you find time to read the new site - and remember, you can "syndicate" it. Add it to "my yahoo!", "my msn", Firefox live bookmarks, Bloglines....

Or you can just add it to your favourites and check it every now and again...

Down-hearted.

Should have had an injection of Sustanon (testosterone) on Thursday, but because I've to go in for more tests soon, I'm not able to take anything. Taking testosterone would possibly make the results misleading. One of the tests is on the hormones that "ask" for testosterone, and also on the hormones that say "that's enough" testosterone.

Once I've had the tests done, I'm changing to testosterone gel, and I can apply that as soon as I get home basically.

In the meantime I'm now at least able to say that testosterone was making a difference! The consultant told me that my own levels of testosterone are dropping every time I'm tested. So, it would seem, the supplementary testosterone was increasing my overall levels, but perhaps my levels were still too low.

The other problem was that an injection was taken once every three weeks - and took (about) a week to work, and only lasted a week, before wearing off again for the last week. The new system, the gel, can be applied daily - and the dose can be played about with to a certain extent. It's expensive (£100 per month) but at least I only have to pay for it using the normal prescription charges. In addition I've got to be careful once I've applied it. No point putting it on before going into the shower - that would wash it off. So put it on after the shower. Then make sure I'm wearing at least a t-shirt over the area that it's been rubbed into. This is because seeing as I am outnumbered 4 to 1 by my wife and daughters in my house, I'm the only one that wants testosterone!

Sweating has gone up again. I've an alarm clock in my bedroom that has a temperature display on it. Regardless of how accurate it is, I am sure it's accurate to itself. It generally goes no lower than 18 degrees celcius, no higher than 22 degress celcius. I've noticed the last few days it's been pretty constant at 20 degrees, and I've been sweating "profusely". The shakes have increased - I could now probably do a drum-roll very easily!

All this tells me that if I can get the testosterone levels under control, I might just get some quality of life back again. Tiredness is one thing - the feeling of suffering from flu is getting harder to cope with.

Also not helping is the work situation. There's no way I could currently "go to work" in a normal 9-5 situation. I tend to wake up every morning with or just before the alarm at 6:30am. I then spend the next hour in bed feeling like I've been walking for 50 miles in the night - very sore and tired feet. I then get up, and get dressed etc, and drop one of my daughters off at school. Then it's back home, where I switch the laptop on until lunchtime. I spend the time between 12.00 and 5pm fighting to stay awake, but usually give in and fall asleep. And it's a deep sleep more often than not. Between 5pm and 7pm we'll eat our evening meal, then it's off to bed. Once I'm in bed I either fall asleep within half and hour (then sleep until the next morning) or I sometime am unable to sleep - like I'm overtired. If the sweating is bad, I feel too hot to get under the covers, but because I sweat so much, I can soon feel too cold to not be under the covers.

So, it would be hard for me to do a days work in an office that needs a twenty-mile drive to get to. Traffic round here means that 20 miles can take anywhere from an hour to 90 minutes to do.

I am able to plan ahead and have busy days. For example, we had a family birthday recently, and I drove to the function (we had to be there for around 2pm), drove to someone's house afterwards (at around 5pm), then drove home at around 8:30 / 9pm. Late night for me. I managed it though, because I stayed in bed until about lunchtime that day, then made sure I had nothing too difficult to deal with the next day. And I felt rotten the next day.

The trouble with this planning ahead is that people think you're better. I push myself to get through whatever event it might be. I prepare in advance with extra sleep, I make sure I'm free the next day to recover. On the day itself I'll keep pushing and pushing myself to get through stuff. Like I'm climbing the side of some rock-face, once I get to a certain point and I think I'm near the top, I'll push myself to get to the safety of that top of the rock-face, where I can rest and think about what to do next. I'm able to motivate myself, but I find it hard and really frustrating when I can't get things done.

Forgetfullness is another problem. Not major forgetfullness - I've not got the symptoms of Alzheimers for example, where people forget how to drive, after driving for 40 years previously. More forgetting what I was about to say, what I was about to do, or even what word I want to use. And using the wrong word seems to be happening a lot now.

The other memory-related problem is my lack of memory of recent things I've done. Some of the tablets I'm on have days of the week on them, otherwise I'd forget if I'd taken them or not. The real worry is when I think I haven't done something, that I know I need to do. So I then go to do it, and find I'd done that the day before.

Another symptom is what I call "The Horribles". It's an awful feeling quite frankly. Not so much painful as very disturbing. My body feels as if it's buzzing inside. I have a vein in my mouth, under my bottom lip, that you wouldn't normally know was there - when I get "The Horribles" it beats like crazy. Sometimes this feeling is followed by horrendous headaches, sometimes it's not. My muscles go funny - really funny. And it bears no relation to what I'm doing - it's not fear or stress, although in some ways it's a similar feeling to what you get when you go on a thrill ride - not the same, but similar.

So, if I do get a diagnosis in the end, I'm hoping that posting it on here might help others get some answers.

Ways to cut out the tiredness.

I started this site as a way for me to log what was happening to me in my quest to find out why I was so bloody knackered all the time.

I've still not fully found out.

One thing I have found is that there are many ways to try and improve your quality of life when it's suffering due to tiredness.

I do recommend that if you are tired all the time that you go and see a doctor and ask that he carry out at least some of the basic tests, such as Thyroid function, diabetes, anaemia etc.

Regardless of the cause of your tiredness, these things are bits of advice I've picked up from my travels around the internet, through seeing different medical people, and advice from others.

1) Keep active. When you are tired, it feels like you should rest more, to get your energy levels back. Unfortunately this isn't always the case. It does no harm to go for a brisk walk. To do this you need to plan your day, but if you've a couple of hours to spare on a Saturday afternoon, go for a walk for 45 minutes to one hour, then come home and have a nap for the rest of those two hours. Better to do that than sit in the armchair for two hours watching TV and getting neither a decent rest nor any exercise. If you can manage a longer walk then all the better.
2) Drink lots of water. This advice appears all over the place. We don't drink enough water. Personally, I find the taste of the tap water where I live is disgusting. Slightly less chlorinated than the local swimming baths, but still not pleasant. We've got a filter jug now, which means that a drink of water tastes OK. Boring, but Ok. Drinking water ensure you don't get dehydrated, as dehydration can cause different parts of your body not to work properly. From what I've read, you should drink regularly rather than waiting until you are thirsty - when you are thirsty you are already dehydrated!
3) Stop saying "can't"! I used to say it myself, and probably still do although I try not to. So many people say "I can't sleep", "I can't stay asleep", "I wake up in the night and can't get back to sleep" and so on. What you really mean is that you have been having problems with your sleep. Why? It could be for any number of reasons, but one sure-fire way of making sure you have trouble is to tell yourself that it's impossible to cure it, because that's what the word "can't" means. What you need to do is address the part of sleeping you are having trouble with. If you are having trouble getting to sleep, try to change your routine. You need to get yourself relaxed. Methods I've used in the past are: Reading a book (this works better than reading a magazine or anything else, because reading a book tends to mean you are more rested - reading a magazine means you are moving through articles and each time you move to a new article you wake yourself up again slightly). Listening to music. If you think you can do it without strangling yourself, a pair of headphones and a CD you like is a good way to doze off to sleep. Try and concentrate on one instrument, just trying to hear that one instrument in each song. Try concentrating on the lyrics. As soon as you realise that a guitar solo has startled you slightly from sleep, turn the music off and go to sleep. You'll be asleep in seconds. Another way is to try and concentrate your mind on other things than the junk of the day. Try counting backwards from 35o in multiples of three. Concentrate on each number. Picture each number. Move to the next number. You'll probably not get to below one hundred. As far as staying asleep is concerned - it doesn't matter if you wake up - you can turn over and go back to sleep. Don't look at the clock - you'll only start counting how little sleep you've got left - turn your clock the other way before you go to bed. To get back to sleep in the night, work out why you might have woken up. Do you need the loo? Well go to the loo, and make a note tomorrow night that you don't have a drink one hour before bedtime, and that you go to the loo before bed. Wake up thirsty? Take a few sips of cold water, and use the loo, before getting back in bed. Heard a strange noise outside? Well go and have a look to see what it was - then get back in bed. You'll sleep better once you know it was just next doors cat falling off the fence, instead of imagining that it's an evil gangster looking for revenge at the wrong house. Overall, you can sleep, you will sleep, and the sooner you tell yourself that the better.
4) Oxygen. So many studies say that problems are caused by low levels of oxygen. People are ill because they struggled in some way to get sufficient oxygen. We need oxygen in our blood stream. So, unless there's a medical reason not to, why not spend time taking in good levels of oxygen. I don't think you need to go and hire an oxygen cylinder - just take good deep breaths. Spend five minutes, every hour, taking in good, deep breaths. In through your nose. Hold. Breathe out slowly. Exercise your lungs and get more oxygen at the same time.

These are just some ideas. None of these will cure your diabetes, hypothyroidism or ME/CFS. But they'll do you no harm, and might just help enough to get you do more of the things you want to do.

Low levels still

I went back to see my endocrinologist today.

Since my last update I've had an appointment to see a specialist in relation to my high cholesterol levels - which were at 7, with 5 being desirable. I'd seen my GP, who said I wasn't in the high-risk group (I don't drink or smoke which lowers my risk considerably). He said I don't need tablets. Then when I was in to see the nurse, I was told that I had been referred about my cholesterol. So I'm not sure what it was that made him change his mind.

Today, the endocrinologist said that I didn't need to go and see the cholesterol man. He'd also taken my cholesterol levels, and said that they were high enough, along with my problems of testosterone and so on, to warrant me being on the cholesterol-lowering tablets. So I figured it was a good idea to free the appointment up for someone else. Having a slight sleep-apnoea problem also adds to my "risk-factor".

He was also dismayed when he found out I'd not had my MRI scan yet.

My latest round of results show that my testosterone levels are still falling, and there was no trace of growth hormone at all in the basal test I had done last. I also had low levels of the gonadotrophin-releasing hormones.

Growth hormone is a hormone that isn't constant in the blood. It's released in pulses, or in response to certain stresses, so an undetectable growth hormone level in a basal sample isn't always conclusive. This means that I once again need to undergo an Insulin Tolerance Test (ITT).

I'm going to be having that appointment in about two more weeks (all being well) - enough time for the current artificial testosterone to have gone out of my system. The levels of testosterone need to be my natural levels, as one of the tests being carried out as part of the ITT is to see how my body tries to produce the gonadatrophin-releasing hormones.

All of this also gives more weight to the argument that I need to have a scan done urgently, and hopefully I'll now not be waiting too much longer for that.

I'd noticed a pattern with the testosterone, that it seemed to take a week for the injection to start working, and it would work for a week, before failing to work again. So it meant I had one relatively good week out of three.

The consultant has now recommended that I go onto a gel-form of testosterone replacement. This is rubbed into the skin every day, and so means that levels should be consistent from week to week. It also means I'll not be getting the pains in the backside once every three weeks.

This version of testosterone is expensive - about 100 GBP for a 4-week supply I was told today - the hospital pharmacy don't keep any in stock, because it's not used that often, and is too expensive for them to chance having to stock and then it go out of date.

So, to sum up:

Testosterone - still low, and falling - start taking a gel (after ITT)
Growth Hormone - undetectable in last test, therefore needs an ITT to check
FSH / LH - low.
Cholesterol - high, need to take tablets for it.
Next appointment - April.

Long time no post...

I've not posted on here for ages, so what's been happening?

First of all, I started to feel as though as maybe I was on the mend - I don't know why, I just thought there'd been a slight improvement. I think a lot of that was psychological - I was trying to tell myself that there was nothing wrong with me, that I'd be OK soon.

Trouble is, this week's been tough. I've been back to sleeping for 12 hours overnight, then having a 3-hour nap in the afternoon. I've not been shaking as much, and the sweating doesn't seem to be as bad, but I've had more headaches, and my eyes seem to be struggling to focus more.

Still, there's a lot more in the world worse off than me - I'd appreciate it if any readers of this site went to have a look at the Make Poverty History website - a very good cause.

Donate to help relief efforts for the disaster caused by the Tsunami in Asia

If you've been moved by the destruction caused over Christmas in Asia, please visit www.justgiving.com/theretailpark and you can donate...

Went missing...

Anyone who's read this boring stuff previously probably wonders where I've been.

I've basically not got round to updating this - nothing more exciting than that.

Here's a quick update on the last 2 months.

First of all, in terms of the car incident. Wife and daughters are all OK now. The 3-year-old is still a little scared of being in the car, but for the first month we practically had to force her into the car when we had to go anywhere.

The car's still not fixed. Renault Manchester have had the car for 8 weeks or so and still haven't fixed it. They've been waiting for some clips to come in which hold the wiring loom in. These have been coming "tomorrow" for the last month now. And once the clips are in the car will be ready "early next week". Again, this is what they've said for the last month or so. Still, they've just got a bit of free advertising off me. I got the car sent to a main Renault dealer for the repairs because I thought I'd get a good professional job done. Obviously I was mistaken!

Health-wise what's been happening?

Got the results back from my last round of blood tests. On the day of the tests my blood-sugar never went below 2.9 units. On the results from the labs they found I'd actually got as low as 2.1

It seems that all the signs are showing I've got a problem with my hypothalamus rather than my pituitary. Not sure if this is a good or bad thing.

My GH levels have shown up as low from these tests, but only just low. This means that I need more tests to see whether this was a one-off or not.

I've also got to go for an MR scan. I was originally down for a CT scan on my sinuses, but that's now been moved to an MR scan on my head in general!

I also got a referral to the sleep thingy at Wythenshawe hospital. I was given another pulse oximeter to bring home. This showed that my oxygen levels never dropped particularly.

They then made me stay overnight, a couple of nights back, for more tests. I had a load of stuff strapped to my chest and stomach, along with pulse measuring things on my fingers, another device to monitor my "snoring" level, a couple of bits of plastic up my nose, and all of this wired was connected to a computer network cable. I then had to try and sleep in this strange environment, and I had to stay on my back for so long, and my side for so long.

A strange experience. I arrived at the hospital at 9.30pm, I was in the room by 10pm, then I was strapped up and by ten-thirty I was trying to sleep. I was woken up the next morning at 6am, and was home again by 6.40.

I've got to go back tomorrow to get my results, which will be a longer journey. Going to the same place, but instead of having a 30-minute journey, we'll have to allow 2 hours each way (that's how long it took previously during rush-hour).

So unless I'm given some news tomorrow, it looks like I'll end the year no wiser as to what's wrong with me, and no wiser as to how easy it will be to get back working again and so on.

Anyway, in case I don't write again for a while, hope you have a good time over Christmas, and a great new-year!

Waiting for the aftermath...

After all the drama of today, I'm now waiting for the aftermath.

My little girl was sitting talking to me tonight, just before she went to sleep, distant look in her eyes, asking all kinds of questions about why the airbags went off. Or what they were. And where was the car. Really seemed to have hit her.

I was told that in hospital, before I got there, she'd said she wouldn't take her top off until she'd had "a hug off daddy". Upsetting really.

She's only three.

At least everyone's OK physically. That's the main thing.

When I say OK physically, three of them are complaining of aches and pains, at different levels. The one who isn't complaining is the three-year-old. We'll see tomorrow if their aches get worse.

I was actually off ill from work (still), and they'd gone and left me so they could visit a relative, seeing as it's school hols.

I waved them off, then I came upstairs to relax for a bit, intending to maybe go back downstairs again at lunchtime, depending on how I felt.

I hadn't really been upstairs long when the phone rang. I didn't answer it - I'd have never made it downstairs before it stopped ringing, and I thought if it was anyone who wanted me that they'd get me on the mobile.

After a couple of minutes I realised that it could be a number of people who I could speak to, who've not got my mobile. That's when I found out the problem.

I then had to come back to life, find the keys to the clapped-out Corsa, find the 3-year-old's old car seat - still OK to use, but had not been used for a while as the Corsa had not been getting used much. Garage was where the car-seat was, but that had been getting "sorted" last couple of days. So it was a mess. The car seat was there, under a couple of carrier bags.

I actually unlocked and locked both the interior and exterior garage door countless times before I found the seat.

I had to ring the relative to tell them what had happened. I spoke to the police shortly after, and they were really good. They stayed with my eldest daughter until I got there, as the other three had gone in the ambulance.

I am not sure I was within the speed limits all the way from home to where the crash had happened, which was at a guess about 9 miles away.

I then took some photos of the car, after phoning the AA. I took my eldest daughter round to the relatives house, then went back to the car waiting for the AA.

After the car had been towed off, I went to the hospital. They had been waiting to be seen for a while, but were being seen when I got there. Which took a while, as a) I wasn't sure of the way, and b) the road I'd taken had been correct, but was closed for resurfacing - I had to turn around and try a different way.

Anyway, all told it's OK now really. Everyone else is sleeping. I'm not - my head's buzzing, my feet are really sore, I'm aching all over. Nothing new there then.

I'm just hoping I've enough reserves of energy to a) deal with the insurance people tomorrow and b) try and take them out somewhere to forget about what happened...

The aftermath? That's the payback I always get when I overdo it - which I did today!

Thanks a lot.

Thanks to the driver of a Silver Ford Focus, who smashed at full pelt into the side of the car my wife was driving. He then drove off. He didn't stop to see if the 3-year old girl in the back seat was hurt. Or if the 13 year-old girl in the front seat (whos window was smashed) was hurt. He just scarpered. As it was they weren't badly hurt, and our decision just over a year ago to choose Renault because of its safety record was justified. My little girl was in shock, definately, and at about 8pm tonight started to ask question after question about why bags had come out of the roof, and asking where the car was now (she'd gone to hospital in an ambulance and came home in another car). Accidents happen, but to crash into a car carrying children and then scarper, deserves serious punishment. And the policeman who attended the scene said that he'd be in serious trouble if caught.

You can click on the image above to go and see the pictures close up - quality isn't great though, it was taken with a camera phone held in my shaking hand...

Been to ENT - progress!

Well on my last post, I pointed out that I was off to ENT clinic, and that I had a raft of questions to ask...

They were:

1) Sleep study results
2) Sinusitis - do I have to take steroids FOR EVER?
3) Itchy ears - can I have anything for it?
4) Sore throat - what should I take?
5) Breathing problems - is that anything to do with the sinus troubles?

Or at least that's what I said in my last post, which was made at around 2am this morning!

So, what answers did I get?

1) Results explained to me, show that my levels did not drop substantially in the night - i.e. a regular drop of below 90%. However, I am still going to be referred to another hospital for a more involved sleep study, where I've to stay in overnight.
2) I'm going to have a CT scan on my sinuses - I suppose I'll know after those results are through what the steroids situation is.
3) I had my ears drained and checked. It seems that my itchy ears are basically a form of eczema, which I get elsewhere on my head, and wouldn't benefit really from steroids or antibiotics. However I can use any over the counter remedies I like as it may ease the itching, without having long-term side-effects.
4) Sort throat - didn't really get a specific answer on that.
5) Breathing problems - this is likely to be looked at as part of the CT Scan mentioned above.

My doctor today was a female English doctor, who knew what she was talking about and really wanted to help. Considering that the previous doctor decided to discharge me without explaining what was going on, without looking at things properly, it came as a surprise today to find that a) I am going to be sent for a CT scan of my sinuses, to see whether surgery would be of any benefit and b) I'm off to Manchester for a sleep study.

How can the other doctor discharge me, yet today I've been referred for two separate sets of tests?

My endocrinologist wrote to the ENT consultant, and it seems this spurred them into some action. In fact although I saw a doctor today (a very good doctor) rather than the consultant, she did confer with the consultant.

I'm happier now - I'm going to be checked out. What if I hadn't had such a great endocrinologist looking after me though? I'd have been left to suffer from now on.

The reason I am going to be sent for the sleep study is because I filled in questionnaire some time ago and got a score of 21 out of 25 on the daytime sleepiness scale. There's a name for the test but the name escapes me. This is a very high score apparantley.

Although the doctor herself was brilliant, a credit to the hospital, unfortunately the hospital itself has discredited itself with a) allowing such a poor doctor as the last one I saw to still be working there (I saw him in a corridoor today) and b) once again having ridiculous delays in being seen. I had a 10.30 appointment, and arrived at 10.15. I didn't go in to see a doctor until 12.15! So I had waited two hours, my appointment was 1 hour 45 minutes late. Who organises these things? There were three different clinics on today, for three different consultants, I assume for different fields of medicine. All three were running late by getting on for two hours!

SINUSITIS - a patient's guide

SINUSITIS - a patient's guide

Put this link up because I'm off to the ENT clinic tomorrow. Going to (hopefully) be spoken to in English by someone who knows what he's doing, so he can explain:

1) Sleep study results
2) Sinusitis - do I have to take steroids FOR EVER?
3) Itchy ears - can I have anything for it?
4) Sore throat - what should I take?
5) Breathing problems - is that anything to do with the sinus troubles?

I'll forget all of those of course.

Don't Panic!

I've noticed that there's a fair number of visitors coming to this blog from search engines, using the words found throughout this blog, such as "tired", "aching", "knackered" and "always".

And I've also noticed that the subject of my last post was perhaps a little worrying to them - if they thought they had my symptoms.

They shouldn't worry. My symptoms are my symptoms. Mine are stupid and don't fit completely into any diagnosis.

When I first realised that this tiredness wasn't going away, that I was only able to go to work, then come home and sleep, I went to the doctors. At that time I seemed to be having to choose between working or spending time with my family - if I went to work I was too tired to spend time with the family. To spend time with the family had to be during the day when I had a bit of energy. Emphasis on "a bit"!

The first tests they did on me were probably all pretty standard for those going to their doctors with tiredness. Thyroid hormone levels. Diabetes. Blood Count. Kidney and Liver profiles. Probably some more, I can't remember now.

In my case they all came back as "OK". Now I expect the vast majority of people who are tested by their doctor would get a result from those first tests, and in a lot of cases the condition is relatively easy to treat. In other words if I'd had one of those conditions I was first tested for, I'd now be quite possibly feeling OK. I may be on drugs with need to have regular visits to hospitals or clinics, but I'd probably be OK.

I don't know for sure what's wrong with me. I'm still in the limbo period where I've no idea what the future is for me. I'm hopeful that it's very treatable, just requiring tablets and the occasional injection. At worst I might need some surgery. Small surgery.

So all that I'm saying is - don't read this blog, see your symptoms and think there's something major wrong with you. I don't even know if what's wrong with me is major yet.

So - cheer up, and go and see a doctor!

Tumour?

I have started more and more to come to the conclusion that this is what is wrong with me. Thanks to unfranked parcels of blood and the delay it takes for samples to be tested, I'm yet to be diagnosed. I wish I just knew for certain what was wrong - then I can face whatever treatment I need.

Colds and Flu

Colds and Flu. Everyone in this house has just been struck! Everyone except me. I've just been feeling exactly the same as normal - which is like having flu.

I use a nasal steroid which may explain why I've not had any more sinus trouble than normal. So maybe I've found a good thing about this mystery illness I've got - you already feel bad when you get a cold or flu, so it doesn't make you feel any worse!

I've actually had a bad couple of days in terms of the symptoms I get. I've started calling them "The horribles" - I get this strange sensation all over, my heart seems to pump more quickly (I feel a vein in the front of my mouth, under my bottom lip, which pounds like crazy), I have very shaky hands, my legs just feel really strange. It's hard to explain it, I'll keep trying, but it's not nice at all. It doesn't stay with me all day, but the last two days it's been quite strong and more frequent and long-lasting. Maybe that's how this bug has decided to attack me!

The rest of the house now seem to be over the worse, although I still keep hearing lots of coughing from all round the house!

Monday morning

My insomnia is getting worse. Or is it sleep reversal. Take yesterday. Saturday. (Monday hasn't really started yet, in my head, so Saturday was yesterday). I got up at about 7am. I didn't get out of bed properly until around 8.30am. I felt tired most of the day, but we had visitors so had to stay sociable.

I went to bed at around 7pm, but didn't sleep - too much going on in the house? Don't know, just glad to relax (I was aching again).

I was still awake at 5am. FIVE A M!.

I then slept until 11:30am. So I got 7 and a half hours sleep in the end.

This is where sleep reversal comes in, if I remember correctly. My body clock seems to have shifted to a different time zone.

I've a really sore foot as well. On one side (hate to use this word, but on the metatarsal). Just on one foot really. Aches day and night, but there's nothing there, no bruising or anything.

Anyway, it wouldn't be the early hours of Monday morning if I wasn't posting here...

Cushing's Syndrome

I overheard something when I was being tested today. I don't think I was meant to hear it. This seems to be what they are suspecting is wrong with me...

Didn't go hypo.

I had my test today.

My blood sugar needed to go below 2.2 for it to be worthwhile. I didn't get any lower than 2.9, despite having 66 units of insulin.

I had to stay laying down for the duration of the tests. I was in the hospital for 8am, and the tests started at 8:30. At 13:15 the tests were over and I was allowed some water, then some food and a cup of tea. I left the hospital at about 13:45.

I have had a good sleep this afternoon, and ended up with a very bad headache. I've taken painkillers and the headache's now at arms length, but it's still there.

I'll possibly write some more later.

Just a quick note: The staff that dealt with me today were excellent - the nurse that had to canulate me, take blood, take notes, etc; the student nurse who was only allowed to take blood sugar tests, but kept an eye on me, especially when I went very drowsy and shaky; and last but not least, the doctor who had to be present, she knew what she was doing and was good at explaining what was going on. Thanks to them all (in the unlikely even that they read this!)

Too late. Fast has started.

I've now got no chance of eating! My alarm clock just beeped to me that it was midnight.

It's always the same - your mind plays tricks on you. When I packed in smoking (and every time before that when I tried) I found for a while that images of cigarettes would appear out of nowhere, associations with cigarettes etc. I hardly ever get this now (although I do get times when I feel like I should be going for a smoke) and I certainly don't get cravings. I found last week though that images of things like cans of coke or cups of coffee would appear.

Just don't want to be tempted now...

I could just eat some Haribo Sour Mix...

2 minutes and guess what?

Yes, I'm feeling hungry. Very hungry.

I hadn't noticed. I've no time now to get anything. That's it now until about midday tomorrow.

Ah well.

Five minutes left!

Five minutes left until I can't eat or drink. Well, I'm allowed a little water.

Why? Because I'm trying again tomorrow to be tested. See earlier posts from a week ago to see what I'm talking about.

I've been unbelievably tired today. Tried doing a few things - some doors on some cupboards weren't straight - straightened them, then had to lie down for a bit. Tonight I wanted to nail some wire to the skirting board with some clips - had to use a hammer, and some bits were hard to reach under the radiator. Absolutely wore me out!

Came to bed and just lay here for ages, unable to move. Not so much sleepy as just bodily worn out now.

Looking forward to the test being over with tomorrow - I was more psyched up for it last week, this week I just don't feel ready at all.

Surprise! Not...

As predicted, still awake. At 1.00am. I'm not feeling too good - I'm tired, but I am absolutely roasting hot. The temperature in here is 22.9c - that's not too hot, or is it? We've not had any heating on today, but it's sooo warm.

Should I open a window? Can't - it's raining heavily outside and it would rain into the house.

Maybe the bathroom window can be done.

I'll go and check...

3 more hours?

I've noticed that a few times now on a Sunday I'm posting about how I can't sleep. Let's see what happens tonight! I'm about to try and get some sleep in a moment - emphasis on try!

A couple more days and it's time for my tests. I'm really hoping they show something.

I had a very active day yesterday. By my standards. I took two light fittings out of the living room, and replaced them with new "ceiling roses". I found this very difficult - my arms ache very quickly if I'm trying to do something with them up in the air like that. Next up I had to look at the wiring for some lighting I put in the cupboards a few weeks back. This was another tiring job - stood a couple of steps up a stepladder for a couple of hours, stripping wire and reconnecting it. I was wringing with sweat by the end of it. I went upstairs, dried off, got on the bed and proceeded to be very cold. I was cold for a while afterwards, but later on I had to open a window.

You can't win!

A write up on that test I'm having

This version is from the following site: http://www.medicdirect.co.uk/tests/default.ihtml?step=4&pid=1612

Insulin Stress Test of Anterior Pituitary Function

Purpose

To test the integrity of the hypothalamic-pitutary-adreanal axis and for the assessment of growth hormone reserve.

Principle

If the hypothalamic-pituitary-adrenal axis is intact, the stress of insulin-induced hypoglycaemia should stimulate the anterior pituitary gland to secrete ACTH leading to an increase in cortisol secretion by the adrenal glands. The stress should also stimulate secretion of groth hormone by the anterior pituitary gland. The test may be combined with thyrotropin releasing hormone (TRH) and gonadotropin releasing hormone (GnRH) to completely test pituitary function. Protocols for these tests alone are available separately: this protocol covers the combined pituitary function test.

Precautions

1. The induction of hypoglycaemia with insulin is contra-indicated in patients with epilepsy or ischaemic heart disease.
2. If the patient becomes shocked, has prolonged sweating or is unable to answer simple questions, give 50% glucose immediatel by intravenous injection followed by a 5% dextrose infusion. However, you should continue taking samples for hormone investigation as the stimulus will have been adequate.

Preparation

1. Fast the patient overnight.
2. Obtain the following:
• Venous cannula with 2 way tap
• Soluble insulin
• TRH 200 micrograms (if required)
• GnRH 100 micrograms (if required: Not indicated in children)
• Hepsal (or equivalent)
• N Saline for infusion
• 2 x 50ml syringes and 2 x vials 50% dextrose (for use if severe hypoglycaemia occurs)
• Hydrocortisone 100 mg for injection in event of anaphylactic reation to TRH or GnRH
• Glucose 'sticks' and meter for rapid glucose measurement in case of emergency

Procedure

1. The supervising doctor should stay close to the patient thoughout the test: Without adequate supervision, this test is potentially life-threatening.
2. Insert the cannula and start saine infusion running slowly to keep vein patent.
3. Leave patient quietly at rest for at least 30 minutes.
4. Take a baseline (0 min) blood sample. This should be taken via the indwelling cannula: First turn the tap to prevent further flow of saline. Then take 5ml blood into a syringe and discard (this prevents dilution of the hormone sample). Finally collect the samples required. For the combined test this is 2 x 10ml clotted and 1 x 2ml fluoride / oxalate (For children please contact the lab in advance to discuss sample volumes). After collecting the blood sample inject 2-3ml Hepsal and turn the tap to allow saline to flow again.
5. Give soluble insulin intravenously followed by TRH (200 micrograms) and GnRH (100 micrograms). (TRH and GnRH may be combined in a single syringe).
   INSULIN DOSE: The objective is to produce mild symptomatic hypoglycaemia. The usual dose is 0.15 Units / kg body weight. If there is a strong clinical suspicion of hypopituitarism, start with 0.1 Units / kg and repeat with the larger dose on a second day if adequate hypoglycaemia is not achieved. Patients with Cushing's disease or active acromegaly may require 0.2 or 0.3 Units / kg (or more): Discuss this with the requesting consultant. NOTE INSULIN DOSE ON REQUEST CARD.
6. Take further blood samples at 30, 60, 90, and 120 minutesusing the same procedure as described above. If symptoms of hypoglycaemia become severe, test the patients blood glucose using the glucose 'sticks' and give 50% dextrose if necessary. In this event continue to collect samples as the stress produced was adequate.
   NOTE: In exceptional circumstances it may be necessary to administer further glucose and therefore a vial of 50% dextrose must always be available in reserve. If no symptoms of hypoglycaemia develop, the stimulus was probably inadequate. Using the glucose results, reassess the dose of insulin required and repeat the test on the following day.
7. At the conclusion of the test a full meal should be given. Send the samples to the laboratory clearly labelled with the times they were collected (0, 30, 60, 90, 120 minutes).
   NOTE: No Specific Order Entry option is allowed for this test: You must enter each sample to be collected indicidually and the time it is taken. This is deliberate because it ensures that samples are labeled in the correct order.

Interpretation

If the blood glucose falls below 2.0 mmol/L or systemic effects of hypoglycaemia (e.g. sweating and tachycardia) were seen, the stimulus has been adequate. In normal subjects, serum GH levels reach at least 30 mU/L during the test. Peak GH levels less than 15mU/L may indicate partial GH deficiency while patients with total GH deficiency have undetectable levels throughout the test. Normally the plasma cortisol concentration increases by at least 200 nmol/L to reach at least 560 nmol/L; An inadequate plasma cortisol reaponse suggests impairment of some part of the hypothalamic-pituitary-adrenal axis. A Synacthen test may be indicated to investigate this.

Late night again.

Seem to be having trouble just getting a set 8 hours from bedtime 'til morning. I'm either staying awake too late or waking up too early.

Bad stomach this week. I reckon it's down to the stress of building myself up for Tuesday, and then it not going ahead.

My feet are unbelievably sore too. I had the shakes earlier. Bit of a nose bleed (not a major one like I used to get years ago). Wrist is extremely sore - from when I fell a couple of months back.

Other than that I'm feeling great. :0)

I don't believe it! (apologies to Victor Meldrew)

The phone rang this morning. Witheld number. Didn't quite get to it in time. Waited a moment to see if a message had been left - it had.

It was the PIU (Planned Investigations Unit) once again. Telling me that the appointment was now being moved to Wednesday 13th October.

Two weeks from today.

It should have been yesterday, but they messed up.

I spoke to my consultant's secretary immediately - she told me to to wait a moment and she'd call me back. She did, within minutes, and my appointment was back on for October the 5th. At long last!

Well, I'm not going to hold my breath...

Here's the test I should have had / will have

I believe that this is the test I should have had done today.

Of course I may be wrong, but I'm certainly having something very much like this.

If the nurses don't change their minds again...

Fast over.

Well, I started my fast last night, after a can of coke at 11:45.

Woke up this morning - I was allowed water, but only had a very small amount.

I actually slept fairly well last night, but only for about 5 and a half hours - I had to get up at 6am.

Or more accurately, I had to wake up at 6am. We dropped my middle daughter off at her friend's house at 7:25. We got to the hospital on the dot of 8am.

I sorted my bag out this morning - change of clothes (as going into a hypo can make you very sweaty I was told), some snacks (as I wouldn't be allowed to go home until my blood sugar was back to normal, and I was warned that I may not enjoy the food they gave me!), some reading material (no laptops in the hospital!), a walkman (just in case it got really boring), some deodorant (again due to the sweating), a pen (you never know when you might need a pen), a bottle of coke (for sugar purposes afterwards).

As I say, I arrived at the hospital at 8am on the dot. I waved my wife off (she was going off to see her grandmother, with our youngest, whilst I was being tested).

I went to the Planned Investigations Unit. I took a seat as requested.

So, I've psyched myself up for this. I'm ready to be having blood taken off me, for insulin to be administered, to feel generally quite unwell.

Then they said - sorry, you are a week early.

I was crestfallen, I didn't know what to say.

I looked at my watch. The 28th. That's what the consultant had said. He actually made the appointment when I was there. I was in the room when he phoned up the Planned Investigations Unit. He'd ensured it was on a day when one of his own staff was able to attend. Having a hypo imposed on you is life-threatening, so a doctor needs to be at your side to administer whatever they administer to get you back to normal again quickly.

He'd only booked it on Friday of last week. It's now Tuesday.

My wife had it written in her diary. I started to wonder, as the staff in the PIU were very insistant, whether I'd got it wrong.

I got hold of my wife, eventually, and she was in agreement with me. In her diary, was the entry for the 28th. She'd put it in her diary when we were in with the consultant on Friday.

I actually decided to sit and wait. Or stand and wait. In case someone realised the mistake, and phoned my mobile. They didn't, and at 9:35 am I conceded defeat.

I got the bus (or two buses) and went to my wife's grandmothers. I had a mouthful of coke and a chocolate biscuit on the second bus. Then I had two poached eggs on buns when I got to my wife's grandmother's. And a really welcome cup of tea.

We got home at midday.

I went to bed (I was really tired after building myself up and so on). I slept until 3:30, when my wife woke me up.

I phoned the secretary of the consultant (I'd spoken to her earlier). We were right. It should have been today. The PIU staff were not paying any attention when the call was made last week.

It's now been rearranged for next Tuesday, 5th October. I won't hold my breath, and my wife will wait this time to make sure it's going to be done.

I'm knackered!

Two and a half hours to stuff my face!

Well, I've got two and a half hours until it's time to stop eating. To start the fast in readiness for tomorrow's test.

I am really tired today - I have been all day. If I'm like this tomorrow then the test will be able to find anything!

I'm going to drink some coke, eat some haribos, perhaps some crisps, then try and get to sleep. I've got to be up early tomorrow - we need to leave the house at about 7am, to get to the hospital (dropping the middle child off on the way).

I don't mind fasting from midnight - apart from maybe having a drink during the night, I usually fast from midnight anyway. It's that cup of tea or coffee I'll miss!

My feet are really sore tonight.

I had my tea.

And now I'm in bed. Or on the bed. I'm so tired it's unreal, but I don't want to go to sleep yet!

Routine. What's that?

Just re-read my "need to get into a routine" post. So here's a brief run-down of my day since making that post, which was around 18 and a half hours ago.

I went to sleep very soon after posting that. Woke up a few times in the night needing the loo, but very tired and couldn't get out of bed!

Eventually gave in at 6:30am. Went to the loo. Felt awful, so I sat up in bed watching TV.

Three-year-old daughter woke up at 7:30. Just as a programme came on I wanted to watch and I had to abandon that for her to watch CBeebies. Not that I mind, I just felt like watching something!

I felt tired and stayed in bed more or less, until 9:30 when my wife took the three-year-old to church.

At 9:30 I went back to sleep. I was apparently blissfully unaware that they'd returned home, tried to speak to me, given up and gone to the supermarket. I woke up (for the loo again) at 13:00. I had some lunch (in bed) at 13:30.

I then decided it would be a good idea to go for a walk to the local convenience store. This is a fair walk away, but not that far. It's walkable in about 15 minutes at a brisk pace.

My wife pushed the three-year-old there (in the buggy) and I pushed her back. Although we came back the long way. It was all in all about 45 minutes that we were out for. I was sweating, and knackered by the end of it.

Other than that I've been sitting down in the living room, looking on the 'net etc. On the laptop. I did have to go to the local convenience store again for something we'd forgotten. I drove this time though!

Now I'm waiting for my tea and I feel I need to go to bed as soon as I've had it. I'm feeling drowsy...

Need to sort out sleep patterns - routine?

I've often heard it said that with young babies, you must "get them into a routine". By this they mean having a set teatime, followed by a set bathtime, followed by a set bedtime etc.

Supposedly this helps them to sleep better.

Maybe I need to do the same.

Last night was awful. Early evening, about 5:30 / 6:00 pm it seemed to go quite cold. My wife was "freezing" so she put the heating on. In the end I could not sleep. The heating had been off, but it was very stuffy in the house.

By midnight I had opened a window. In the end I opened another window. And the curtains.

I struggled to sleep all night, still awake at 2am, slept badly until 4:30am, went to the bathroom, slept until 6:30am, alarm still set from during the week and so I woke up again. For the bathroom, again.

This afternoon I had to come to bed. 4:30pm until 7pm when I was woken for a meal.

I've fought my sleep all evening, now I'm wide awake. Again.

Do I need a routine?

BP & Weight

Just a quick note (to myself) to add my BP was 164/95 and weight was 111 Kilos.

Went to see the doctor

I went to see the endocrinologist.

Useful appointment.

Let's get the negative bit out of the way first. I don't see him again now until 26th November or thereabouts. So I'll still be no clearer as to what's really wrong until just before Christmas. In fact that's about the anniversary of when I packed in smoking.

That's the negative bits out of the way. Everything else I would take as positives - if for nothing else then I may be suffering from something treatable. Which means that even if I've got to have all kinds of inconvenience in taking and paying for prescriptions, having injections or tablets, at least I should be able to get my life back again.

First of all, the only result he mentioned from all the blood tests he did on me was that my Testosterone level had now dropped even further. The figure he quoted was 6.4 IIRC and the normal range would usually be between 10.5 and 13.5, again IIRC.

The question here is whether it is only my Testosterone which is low, or whether I've other things low, and that this is a progressive problem.

To simplify how things were put, if I have got normal growth hormone levels, then I should be able to be treated just with the Testosterone. However if I've got low GH levels then there's a chance that it will progress. In other words, GH is low, then Testosterone, then Thyroid Hormone etc. From what he was saying though, even if this is the case it is still treatable, just requiring more monitoring.

Again this is good news. I'd glady go to the hospital every week to have blood taken and injections administered if it meant I was "normal" the rest of the week.

Talking of hospitals, blood being taken and injections administered - that is exactly what is happening on Tuesday of next week.

I go into the PIU (Planned Investigations Unit) again, to have insulin administered, to drop my blood sugar levels and cause me to have a "hypo". Blood samples are taken at various intervals, including before they administer the insulin. Last time I went they did not use enough insulin, and hence I did not go "hypo". Saying that I did get 4o units of insulin in all, with no real effect!

I think I'm having a slightly different test than last time, but I may not be. This time the doctor ensured that one of his own staff would be on hand when I have the test done (a doctor needs to be present at all times as the "hypo" is life-threatening, but easily sorted if a medic is there to put the right stuff into you!). Last time there were all kinds of delays in getting the test done due to the PIU not being able to get a doctor available to do the standby job.

Also last time there was a problem with the actual samples - they'd got packaged up, but the envelope wasn't franked, and nobody would accept it! By the time it was discovered the samples were useless.

Another problem was that on another test I had around that time, they had to take three samples. The second or third samples were not reliable, because they had "heamotised". Must check the spelling of that!

All in all this tells the doctor that there's a couple of options on how to treat me, and assuming there's no problems with the tests on Tuesday, he'll be able to let me know what my trouble is and get me back to normal again.

A great doctor, I'll not name him here for various reasons, but I may well be writing to his "bosses" to thank them at some point! A refreshing change. He even wrote to my ENT specialist as I'd been discharged by another (VERY POOR) doctor from the ENT clinic without any real explanation.

Back to the quack!

Don't know why doctors are called "quacks". I must find out if I'm bored at some point. I certainly don't mean it in a derogatory fashion.

Tomorrow I am back off to see my endocrinologist. He's probably been one of the best medical practitioners I've ever seen. Unfortunately though he's still not found out what's wrong with me - and so far I've not felt any real improvement.

The biggest problem he faces is the nature of the problem makes it difficult to diagnose. First of all he's only really able to be sure about what's going by taking blood tests. These take time to arrange, and time to be processed. Also there's a need in some cases to wait before having tests done to ensure that all the levels of any prior medication have left your body.

Tomorrow is the day I find out what the results were from my last round of blood tests. I was tested for a whole host of things, including prolactin, testosterone, kidney function, full blood count and more - I've forgotten now!

I'll try and put an update on here tomorrow as soon as I can. I'm hoping for some answers tomorrow - a cure even - but I'll not hold my breath.

More of the same.

One of the symptoms of this "illness" is a problem with memory. I'd forgotten how in my last post I'd said that I'd thought I was getting better only to suffer a relapse. Today was a pretty bad day.

I woke up early after not really sleeping all night - at least that's how it felt.

I put a piece of flat-pack furniture together for my eldest daughter's room (a desk) and the sweat was rolling off me. I then had some lunch before continuing with the desk. Then we went to the shops to pick some bits up. I woke up with a headache this morning, and despite numerous co-codamol and ibuprofen tablets it just would not go away.

At 4pm I went to bed, and slept until 6pm when I had to be woken by the family. Then I had some more food. In bed. Which is where I am now still!

I'd honestly thought I was feeling a bit of progress, and perhaps I am in some ways, but today I fell straight back down to the bottom again!

Positives though are that I've put a whole load of flat-pack furniture together, which I didn't think I'd be able to do any more!