Wednesday, 2 April 2014

...and now I am 1

In part two of my diagnosis story I'd been living my life as someone with type 2 diabetes and made big changes to my diet and exercise patterns. I'd lost a lot of weight and continued to do so. At my quarterly appointments I'd been encouraged by the progress I'd made, but the requirement for pills hadn't gone away. Slowly but surely it was getting harder and harder for me to keep control of my blood glucose levels and with my motivation based around working towards a no pill solution, it was upsetting to see myself failing and requiring more and more medication.

In an attempt to minimise the tablets (and ideally remove the need) I looked at the two things that really were in my control - exercise and food. I had already increased my exercise levels and I was regularly going on 10+ mile hikes at the weekends, at work I was using the stairs rather than the lift to get to the twelfth floor etc and so that left the only other variable - food.

This is how the gamification of my condition led to some "interesting" choices.

I understood that eating carbohydrates increased my blood glucose levels and that the medicine was getting less and less effective at bringing my levels back into range. Therefore, if I eliminated or reduced the carbohydrates from my diet then I'd minimise the blood glucose highs.

Foods started disappearing from my diet...

All fruit except berries (raspberry and strawberry) caused bg highs - REMOVED!
Pizza would cause bgs to run high for days - REMOVED!
Pasta - REMOVED!
Eventually it would be the same for rice - REMOVED!

... you get the idea, a lot of foods disappeared from my diet!

In the end I was eating three small meals a day with no snacks inbetween.

If I was really hungry in the evening I would sometimes relent and have something from my choice of three "cheat foods":
  • Cheese and two crackers (4.5g of carbs per cracker)
  • 50g salted peanuts (9.8g per 100g of peanuts)
  • Options Hot Chocolate drink (5.4g of carbs per sachet)
In the morning I would weigh 30g of All Bran and 40g of semi-skimmed milk (17g carbs), I had a small ham salad sandwich for lunch (40g carbs) and then a small meal at night which had to be less than 70g of carbohydrates but ideally much less (c30g).

Towards the end of my time as "Type 2" I was eating less than 1,000 calories per day and less than 100g of carbohydrates, but I was getting lots of praise for how much weight I had lost.

At the end of March 2012 I knew something was very wrong but I didn't know what. I felt a complete and utter failure. My medication was being increased, my carbohydrate intake was being reduced and yet I still couldn't control my blood glucose levels.

The most disturbing thing was that I was started to feel tired and not wanting to do things - exactly the same feelings I had before being hospitalised in 2011, but this time I knew why I felt this way and that scared me. It felt like I was on a path back to hospital and no matter how many constraints I placed around my food, no matter how much exercise I did, diabetes was going to win.

I started to do my own research, to try and understand what was happening to me. I made slow progress because I didn't have the energy to do much after work.
Carb free eating in Iceland
Can you tell what it is?

Before going on holiday to Iceland I rang Helen (the nurse at the GP practice) to talk about my numbers going adrift and what I should do given I was out of the country for the next couple of weeks. I told her I thought the gliclazide wasn't providing any benefit and asked if should stop taking it, but it was suggested that maybe I was coming down with a cold or something and I should leave it a bit longer. If my numbers continued to drift up I should increase my gliclazide up to the maximum allowed, 160g in the morning and 160g at night. Unhappy at this prospect I went on holiday.

Needless to say, despite the increased physical activity, the walking in the mountains, the hiking up volcanic craters etc my numbers did continue to rise and so did my tablet taking.

On my return from Iceland the research continued and I read something that made me sit up.
I immediately went and dug out my discharge letter and read it again - there it was "urine +ve for ketones/glucose" - was I type one and presented in DKA back in 2011? I recalled the initial assessment of Type 1 on arrival at the hospital. I continued to read and came to the conclusion I needed to ask for a GAD and c-peptide test in order to settle it.

I went in to see Helen and she agreed to the GAD test but said they didn't do c-peptide tests. It was a start and might be enough. Easter was coming and I was warned it could take a bit of time for the results to come back. A HbA1c test was done at the same time and obviously that result came back much quicker. My HbA1c results since hospital were as follows:

HbA1c in 2011: March(diagnosed) 11.8%, June 6.4%, September 5.7%
HbA1c in 2012: January 5.8%, April 7.8%

About three weeks on and I still hadn't heard anything about the GAD results. I was told I should find out on the Monday 23rd...



Needless to say the 23rd came and went with no information.

One benefit of losing so much weight was that I believed my sleep apnoea was no longer a problem. I asked for an overnight test to be performed. On the 27th April I picked up a pulse oximeter machine and over the weekend stopped using the CPAP machine and instead recorded my oxygen and pulse levels with this...

A Pulse Oximeter unit for overnight tests
The blue thing in the bottom left of the picture goes on your finger and sends light through your fingernail to measure oxygen levels and sends the information to the machine in the top right of the picture which you wear on your wrist.

The waiting continued...

Waiting for the GAD result...

Waiting for the Pulse Oximeter result....
 
Whilst I waited, the blood glucose control got harder and harder as did the food control.

On May 7th I shared this post online:
Apologies for the length of this post. Not sure really why I'm posting, I know I just have to wait and see what happens and deal with whatever the result is. I guess I just need somewhere to vent a little and waiting isn't something I'm good at! lol.

Since diagnosis last year I thought I had this diabetes under control, but clearly not!

I have changed my diet and reduced my weight from 122.6Kg to 85Kg (6 stone) and still reducing.
My HbA1c results had been good, at just under 6% for the last few tests.
Until recently I was on just 80mg of Gliclazide and having regular lows at around 5pm, so I was about to discuss a reduction in medication, but then overnight something happened.

No longer were my results under control, despite no changes to my diet, drugs or exercise programme.
I waited a week to see if this was just a blip before ringing up to discuss. I was told to wait a little longer in case I was coming down with a cold or something, but that wasn't the case.
It was agreed to up my Gliclazide from 80mg in the evening to include a further 40g in the morning.
I tried that for about 10 days and then it was upped to 80g in the morning.

There was no positive impact on my numbers, in fact it was continuing to creep up, so it was upped to 240g of Gliclazide a day. Still no impact, so finally it was upped to the full 320g, 160g in the morning and 160g in the evening.

So my numbers now fluctuate between 14 and 18mmol/L each day and are pretty much stuck there. Whether I have 100g of carbs a day or 200g of carbs, my numbers just won't get any lower. I've had a couple of days of feeling really rough but my body seems more accepting now of running with high blood sugars... although I know I'm still not doing as much as I would normally, I have that "can't be bothered" feeling in me.

So the current thought is that I was mis-diagnosed and that maybe I am Type 1 after all. When I was first admitted to hospital they thought I was type 1, I had ketones in my urine and the sudden nature of it all pointed in this direction, but by the time I left they had settled on type 2 - no doubt due to my age and weight. So I went in for a HbA1c and a GAD antibody test.

The results of the HbA1c came back at 7.8% (no surprise given that my own readings each day had shown I was outside of the 4-7 mmol/L range) and I am still awaiting the result of a GAD antibody test - unfortunately it seems that for this test it takes several weeks for a result to come through.

It seems odd to be hoping for a positive result but I'm starting to worry about it coming back negative.
I (kind of) understand what will happen if it comes back positive and I can deal with that... at least I think I can :)

If it comes back negative though, I'm not really sure. They could try adding more drugs into my regime - although they haven't told me what other drug options are available or give up on oral drugs and switch over to insulin.
These options just seems shocking to me, one year into a T2 diagnosis having lost (and continuing) to lose weight, to be in a situation where I can't control it with diet and oral alone... that doesn't seem to bode well for the future.

I can see myself getting close to coming of the rails completely, thoughts like "have a biscuit, you're numbers are out of control anyway" are starting to creep in to my head and (I think as a result of the increased dose of Gliclazide) I'm feeling a lot more hungry between meals than before. So far (in the main) I have resisted, but there have been a couple of occasions already when I have given in and more worryingly although I might have had a short term spike with these "indulgences" they haven't really made much difference - by the time I get to my pre-meal reading there is no indication of a slip up - making it harder to stick to the regime.

I'm sure other people have been in this situation and I'm just looking for a little bit of advice on how others coped with being in this situation.

Many thanks (and sorry for the moan),
David
I rang up the following day to see if the results had come in, they hadn't but I was told to come in the following day and it would be sorted.

Waiting for the results...
That night I came home from work, shattered and hungry. I tested my bg level and saw it was in the 20s. I just sat in the kitchen staring at the meter reading until the screen switched off.
Do I eat now and possibly end up in hospital?
Do I not eat and go to bed hungry?
What if tomorrow they tell me I'm not type 1 and I really am type 2, because I can't live like this?
After sitting for what seemed like an eternity, on the verge of tears, I ate a piece of cheese and went to bed.

The following day I went to the surgery and, when I saw Helen, she told me that the results still hadn't arrived. She rang the lab whilst I was sat there. The GAD result was positive, I was type 1 after all!
finally!

I thought I was prepared for the news. It's was (bizarely) what I wanted to hear and yet it was still a shock to actually hear it.

Helen spent time teaching me how to inject, how I should tweak my background insulin doses, gave good advice on colour coding my pens, made sure I had a backup pen etc and that day, in the consulting room, I did my first background insulin injection in my leg.

I was so tired that I knew if I didn't write down some of these things I'd been told I would easily forget, so I recorded this:


A happy ending?

Well at this point things were looking up. I finally had a correct diagnosis. It meant new challenges ahead, but it also meant I could eat properly. With the weight loss it was confirmed that I no longer needed a CPAP machine for my sleep apnoea...


...the first set of tablets were removed...

...and I started to get better at injecting myself...


On the 14th I was introduced to one of the DSNs who could start me on my fast acting insulin (Apidra). The meeting didn't start well.... "Hi David, so you're type 2..." "Er, no!", but at least I had a full toolkit for living and things seemed to be going ok.


It was amazing how quickly my numbers came back into range.

My bg values before and after type one diagnosis
The relief was huge, but it wasn't quite a happy ending. To get the happy ending I was going to discharge myself from my consultants care - a story for another blog post!

Maybe this isn't the end of the story, maybe this is just the beginning!