Type I diabetes v Kallmann syndrome….an unwinnable contest.

There comes a time when something happens for the first time. Since I've been writing this blog it's only been me putting pen to paper on here. No one else has written for me. Well, this is the first time that this has happened. Today's post is written by an ex colleague of mine who suffers from Kallmann Syndrome, another endocrine condition relating to hormones. When we worked together we frequently compared our respective ailments. Here's Neil's offering. Now for me to shut up and let him run the show for the evening.

The following quote was posted as a Facebook status by a colleague of mine with type I diabetes:-

“Dear diabetes, since entering my life in a rather forcible manner fifteen years ago, you have since been a most unwelcome guest who out stayed their welcome the minute they arrive. Now kindly do the decent thing and fuck off out of my life. I don't want to be defined by you anymore.”

This quote struck a chord with me. I don’t have diabetes, I have another endocrine condition called Kallmann syndrome. The above quote could quite as easily be attributed to Kallmann syndrome as it can diabetes type I.

Kallmann syndrome is a rare hormonal condition in which the major symptom is the failure for the patient to enter puberty or to fully complete puberty. Untreated patients would have very poorly developed secondary sexual characteristics and will almost invariably be infertile. It is also associated with a lack of sense of smell. The root cause is the failure of the release of the gonadotrophin hormones (LH and FSH) by the pituitary gland.

======================================================

Diabetes is fairly straightforward to diagnose, even if doctors sometimes get Type I and Type II mixed up.

KS is harder to diagnose as it is normally a case of eliminating all other possibilities first. The biggest hurdle is getting a diagnosis when as a teenager you are constantly being dismissed as a “late developer”. There is no simple blood test for KS. It is not a widely known condition and diagnosis is often delayed well into late teens & early 20’s by which time the benefits of early treatment and diagnosis are lost.

Diabetes is far more intensive to treat, can be a major struggle getting blood sugar levels correct and can have serious complications, both short term and long term if you do not get the treatment right.

KS is fairly straightforward to treat in comparison; a lot of people with KS get a testosterone injection every three months and this is all they need. It gets a little more complicated if fertility is required, but compared to diabetes the treatment of KS is very simple. Testosterone, while an important hormone to have is not in the same league as insulin when it comes to its importance for day to day life.

========================================================

In both conditions you are treating the symptoms rather than the root cause. You never cure either condition; you can only hope to control its effects.

In both conditions you are often left feeling tired & lethargic, either due to fluctuating blood sugar levels or very low testosterone levels.

In both conditions you sometimes have to deal with some medical professionals who have little idea or understanding of the condition. Knowing that Type I diabetics are not the same as Type II’s and have different needs & requirements would be a good start. It is the same for people with KS as most of us are seen by doctors who have not even heard of the condition and don’t know the full range of available treatments that are available.

In both conditions you are stuck with a condition you have little control over. You can’t really escape either condition and it is only really a fellow patient who can totally understand the problems you go through.

=========================================================

Just how much each condition defines our life is a debatable point; I think it varies from person to person. I think it is impossible to live with a condition such as KS or diabetes type I and not let it affect your life. However by talking to patients with other endocrine conditions sometimes you can get a better perspective on your own condition.

In my conversations with my colleague I think we can both safely say neither of us would want to swap conditions.

Here's the link to Neil's own blog site:

http://kallmannsyndrome.wordpress.com/

I don't want to play this game any more....

So, of late it's been pretty shit. No other way to say it really as I am just fed up to the back teeth of diabetes. I don't want it anymore. If I could get shot of this through any way that I could, then believe you me, I would. At any price pretty much.
What's made me want this? Well, first my pump failure not so long ago. Now I've got incessant evening hypos. I'd also like to add that and I've been waking up high for the past few days. That's really got to me as it was all so good until about a week ago.

"They stab it with their steely knives but they just can't kill the beast"

However much I want rid of this, I can't be rid of it. I'm constantly battling it. You can't win against it. You can only keep pace with it and hope that it doesn't over take you for long enough to cause damage later on. Sometimes I feel like I'm trying to keep up with Usain Bolt. I can't always do that. Well, I doubt that anyone can really.

"You can check out any time you like but you can never leave"

Well, in short you really can't stop being diabetic. No matter how much you want. The potential consequences are just too nasty to stop taking care of yourself. The risks aren't worth the potential reward. You can put diabetes on the back burner at your peril. I can leave it alone as much as is possible but I can't leave it in my locker when I start work. I can't leave it on the pitchside. It's there all the time and it stalks me all the time. It's a predator following my tracks in the snow, waiting for a moment of weakness in which to strike.

"It is time for us all to decide who we are. Do we fight for the right to a night at the opera now?"

What alot of health care professionals say is that we shouldn't let ourselves be defined by our ailments. When you suffer from something such as type one you cannot help but let it define you. I just want to be able to forget that I have it. I can't.
I'm always there. I can't escape it. Whatever I fight for now, the diabetes is always there. I'm surrounded by it. My many friends of the DOC (diabetes online community - in short a bunch of fucknuts with insulin and no sanity) may well feel the same at times. I'm always fighting against it. Everyone has their limits. I'm close to breaking point. I can't roll over and let the diabetes win because I've got so many resources at my disposal. I have a pump. I'm one of the few people in the UK to use one. This means I should be aiming high and hitting the spot. Far from it. I'm far from any good at the moment.
However much people say that some of it is beyond my control (pump knackering as few weeks back and the ensuing high BGs and reverting to MDI, albeit for a short while. The unpredicability of my job means I can't set a basal for it. That would be lovely. That's the world I chose to enter so I'm ok with that. What I'm not ok with is that I can't get it sorted. I can't get it right. That's another thing altogether.
Well, it has something to do with me being a perfectionist. It helps. It really does. Then it comes around and bites deep into you. The moment things start going wrong you start assuming the worst case scenario and then you act on it. The moment something strays out of the rigid lines that you set it wrecks the day. Sometimes when things stray high or low (well, with diabetes that means only one thing, blood glucose) and you react accordingly. Then it goes the opposite way. It's just so frustrating. If you managed to understand the last paragraph then well done to you. There's a job waiting for you at Scotland Yard as a code breaker. That or you'd have been deeply welcome at Bletchley Park some seventy years ago.
At the end of the day I'm just unloading. I'll be copying this onto a forum that I use as I can't be arsed to mash out all this again but on a different page. Same shit different day things.

Tom

And you thought it couldn't happen to you...

So the past few days have been a bit interesting to say the least.
What's happened is over the past few days I've been getting rather raised blood glucoses. I thought that was down to having an ingrown hair which was a little infected (I'm currently on flucloxacillin for that) and a chesty cough. It would appear otherwise.
So whilst I was getting BG's in the 20's and one shockingly making it to 30 I thought it was due to that. Turns out it wasn't that. It was due to my pump packing in over a few days. It makes sense as it explains why I'd gradually been needing to put on temp basals that were higher and higher.
What happened was that somehow, insulin had been leaking out of the reservoirs and had got into the electronics of the pump's piston. This meant that it wasn't working as it should. Therefore I wasn't getting the basal insulin nor was I getting the boluses that I needed. If I did get some insulin it wasn't all of what I needed. That sent me sky high. I thought it was a run of dodgy cannulas, this isn't unknown to me. Essentially what was happening is that the piston couldn't work nor did it drive out the right amount of insulin.
So what did I do? Yesterday morning saw me looking at the reservoir slot on my pump and noticing alot of fluid there. I took out the reservoir and about sixty or so units of insulin just splashed everywhere. I immediately phoned Medtronic. They got my replacement out to me today. I hooked it up as soon as I took it out of the box.
Whilst my pump was out of commission, I went back to MDI and had reasonably good glucoses for the time period. Only one hypo and a high glucose of 10.9. Pretty damn good seeing as I was under alot of stress owing to a university interview today and not having my pump which meant I had to dust off memories of MDI and how to inject myself.
It was rather odd having to inject regularly after eleven months of not having to do so. Very bizarre. However, seeing as that played a vast part in my life for the thirteen or so years prior to me getting hold of my pump, it was easier than I thought it would be to slip back into the routine.
Overall, I haven't come out of it too badly. All's well that ends well.

It's been a while.

So, it's been a little bit of a while since I last entered some scrawlings onto these virtual pages.

So what's happened since my last post you hasten to ask?
Well, in answer to that there isn't too much. I've been at work for alot of the time. One migraine and now I've got the benefits of a vile chest and I'm coughing up golf ball sized lumps of phlegm every time I cough. I've also attended some interviews for my universities of choice. My desired course is adult nursing. I've got a few more to go but still, let's wait and see. I've also just shelled out some of my hard earned cash to pay for the registration fee for Friends For Life. This is a fine conference that's run by a Yankee charity called Children With Diabetes and it's held near London where the hordes of pancreatically challenged kids and their parents descend upon a hotel for a series of activities and seminars for the parents. Ultimately a worthwhile thing which I am desperate to go to.

Diabetes wise things have been pretty good. Bar the illness. The nature of my work means that there can't be a set pattern that will work for every shift. All I find that I can do is go into work and set a temporary basal and well, hope. Fortunately I can get most things sussed pretty rapidly. The first few hours of a shift normally sets the tone for the entire day. As for shift work, I will be starting on my long days half way through next month. These will be interesting as I will be at work for thirteen hours. The upside to this is I will be getting alot more time off work and I'll be able to sort myself out in terms of fitness and money by working a load of bank shifts. The fun. Time for me to start harassing the staff bank and fortunately if work comes up on different wards I'll take it as it'll be an interesting experince.

Until the next time!