# Newbie on a quest



## mr self destruct (Oct 16, 2011)

Hi all,
I'm on a mission to find out a bit more info on something I found out about in passing. Four years ago I had my insulin regime changed from Mixtard to Novorapid, and soon after attended a carb counting course at University Hospital in Coventry. It was during one of these sessions that one of the nurses involved talked about an experiment carried out at George Eliot hospital in Nuneaton in the early Nineties. Basically, she said a control group of newly diagnosed diabetics was given extra special care (monthly check-ups, visits from a dietician, help and advice etc.), while the rest of them were left to their own devices. Apparently this trial lasted about a year, after which the same standard of care was given to all the patients, yet over time, they found that while the hba1c levels in the uncontrolled group dropped to match the control group quickly, the instances of complications (organ failure, eyesight problems, the usual etc.) in the uncontrolled group didn't change. Meaning the first year of care was critical to the long-term well being of the patients.

Can anyone shed any light on this? Does anyone else have an idea of what I'm going on about? 

Cheers,
Jonny


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## Robster65 (Oct 16, 2011)

Hi jonny. Welcome 

Not heard about that but I do think early control is crucial. When I was daignosed at 13, my parents went to great lengths to make sure my food was right (weighed/counted) and we worked together to get the insulin right. The only thing I didn't do was much meaningful testing but it was urine tests and I didn't get much from it in terms of useful feedback or enjoyment 

I've had long periods when I haven't tested much since although I've always tried to have a good guess at carbs and insulin and have never skipped injections. So control has been a bit hit or miss.

Despite this, I've only had one small bit of lasering last year and no other complications. I put the 'getting away with it' down to the early years.

Rob


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## Northerner (Oct 16, 2011)

Hi Jonny, welcome to the forum  I wonder if you are referring to the DCCT? (The Diabetes Control and Complications Trial)?

http://diabetes.niddk.nih.gov/dm/pubs/control/

or if it was a more specific and smaller trial at the particular hospital you mentioned.


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## sofaraway (Oct 16, 2011)

Sounds a bit like the DCCT, but that study was alot longer than a year, but showed similar results to you are describing. The intensive managed group through the study had better control but once the study ended after 10 years the control (HbA1c) of both groups was about the same. The group that were intensively managed however had much lower levels of complications. So it showed that early good control protects in the future. Maybe what your nurse was describing was a smaller study done on the back of this research. 

I totally agree that early good control is important, with the metabolic memory aspect. Also the longer the honeymoon period can be preserved the longer than the beta cells can still produce some insulin and resulting c-peptide, which also seems to be important in preventing complications. The studies of those who have had type 1 diabetes for more than 50 years with minimal complications have shown that many of them still have soem detectable c-peptide. Presence of natural insulin production will keep the alpha cells sensitive, once the alpha cell function becomes abnormal then diabetes is much more difficult to control. 

For myself I have developed some complications even though the past few years I have had a pretty low HbA1c, these seem to have occurred from previous poor control. All I can do now is get things as good as possible.


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## teapot8910 (Oct 16, 2011)

Welcome to the forum Jonny


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## Steff (Oct 16, 2011)

Jonny hi and welcome to the forum


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## mr self destruct (Oct 16, 2011)

Thanks for the replies guys, this DCCT does sound familiar, so it may have been a smaller similar study.
The reason I ask is because I was diagnosed in 1991 when this study would have been carried out. When I left the hospital I never had any follow-up care apart from repeat prescriptions, but never thought to question it as I knew nothing about diabetes. Problem is, I moved away from Nuneaton into Coventry and therefore had no specialist care (local surgery did nothing more than sick notes and valium refills). As a result I never actually had an idea of what the correct blood sugar or hba1c level was until 2007 when I changed surgeries, and I was told that 10.2 isn't good. 

I'm just concerned that I'm going to have problems in the near future now, and that it's too late for me to do anything about it. Got to admit this carb counting course was brilliant until she mentioned the study, from then on it was very demotivating.


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## Robster65 (Oct 16, 2011)

It's NEVER too late to limit the consequences of high HbA1c's.

If you're ok for now, there's a good chance you'll get by without much happening. Everyone has a different susceptibility and you may be another lucky one who gets away with it.

Some people do all they should and still get problems, so the statistics shouldn't be seen as hard and fast. They're only an average based on some who do and some who don't get complications.

You're in a good range now and if you can stay there without too many hypos or BG swings, your body should have nothing to complain about.

Rob


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## mr self destruct (Oct 16, 2011)

Well, part of the reason for me joining here was giudance on turning things round. I've been lurking for a couple of months gaining a good few tips and insights, so hopefully things will improve for me now.
I have clear goals now; an hba1c drop of 4%, an increase in my fitness level, a loss of 4 stone (currently 16), but most importantly stability in my sugar levels so I can start cycling again. It starts today!


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## Northerner (Oct 16, 2011)

mr self destruct said:


> Well, part of the reason for me joining here was giudance on turning things round. I've been lurking for a couple of months gaining a good few tips and insights, so hopefully things will improve for me now.
> I have clear goals now; an hba1c drop of 4%, an increase in my fitness level, a loss of 4 stone (currently 16), but most importantly stability in my sugar levels so I can start cycling again. It starts today!



Good for you Jonny! One word of advice, it's best not to go totally over the top and reduce your HbA1c too quickly as the sudden changes can cause problems particularly in the microvascular area (i.e. things like retinopathy or nephropathy, even neuropathy. So aim to bring things down gradually from where you are now. Often the best areas to look at are any bad hypos or highs and try to smooth out these extremes - aim to get most of your levels around the average, then begin trying to reduce that average until you are nicely in range.  Good luck - keep us informed of how you are getting on! Join in the Weight Loss Group as your weight reduces and add to our group totals!


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## slipper (Oct 16, 2011)

Hi Johnny, welcome to the forum and good luck with your weight loss.

 May I share your post as this interested me,



Northerner said:


> Good for you Jonny! One word of advice, it's best not to go totally over the top and reduce your HbA1c too quickly as the sudden changes can cause problems particularly in the microvascular area (i.e. things like retinopathy or nephropathy, even neuropathy. So aim to bring things down gradually from where you are now. Often the best areas to look at are any bad hypos or highs and try to smooth out these extremes - aim to get most of your levels around the average, then begin trying to reduce that average until you are nicely in range.  Good luck - keep us informed of how you are getting on! Join in the Weight Loss Group as your weight reduces and add to our group totals!



That bit surprised me Northerner, not heard that before. I take it it also applies to Type 2,s so a dramatic change in diet is not good then.?


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## Northerner (Oct 16, 2011)

Hi Slipper, I started a new thread on the topic in the General Messageboard


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## slipper (Oct 16, 2011)

Thank you.


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## mr self destruct (May 7, 2017)

Apologies for the lack of updates but I've not been on here for a while (yes, six years) as things have gone downhill for me. One marriage, a kid, a suicide attempt, a coeliac disease diagnosis, a smashed knee and a shedload of counselling later, I'm still in the same place weight-wise. Still interested in this experiment that I was overlooked with, but also if there's a link between diabetes and depression. My counsellor seems to think so, so is there any info out there regarding research etc?


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## Pumper_Sue (May 7, 2017)

Hi Jonny and welcome back.
Sounds as if you have been in the wars a bit.
Coeliac isn't a problem though it's easily managed with diabetes. The depression yes there's a link in that dept........... the higher your blood sugars the blacker you feel.
Have you had a look in the weight loss forum? You will find some help and encouragement there.


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## grovesy (May 7, 2017)

Welcome back.


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## Steff (May 7, 2017)

Hi I remember you Jhonny so sorry to hear all off your troubles m8. x


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## trophywench (May 7, 2017)

Hi Johnny - we've not met before and coincidentally I moved to Coventry (Holbrooks) in 1998.  Registered with my new GP and the first thing he set up was my referral to UHCW - then situated at the old hospital just 'off' the city centre - excellent cos I worked in the city centre!  I could match and probably beat your horror stories.  Absolutely dreadful at times, most times.  It moved to the Walsgrave site and after a bit, we got a new consultant - Dr Sankar - who breathed new life into the whole caboodle.

Roll forward a few years and eventually - in the middle of a 'nervous' breakdown - I actually got to see a proper DSN - a community one based at the old Holbrooks Health Centre, behind the shops where the Irish club still is (St Finbar's LOL)  - and she got me referred to  the Carb Counting course.  It was in it's early days then and I actually got a cancellation, but had to drive to St Cross at Rugby to attend it.  What a breath of fresh air - the two DSNs and the Dietician there were absolutely great.  So I asked if I could possibly be transferred to them full time - and did.  Excellent care ever since.

The really odd thing is, meanwhile back at the ranch we moved to Bedworth - so if we hadn't been allowed to stay at the Holbrooks GP surgery after we moved - we're only 100yds over the border of Coventry - I'd have landed up registering with the Health Centre at Bedworth as my GP and being referred to the Geo Eliot.  Now UHCW run various satellite clinics at Geo Eliot - my husband and I both go there for some things but to UHCW itself for others.  Very confusing.

I've never heard of what you speak - the DCCT Trials were Solely done in the USA, and the UKPDS trials were for T2 patients, and Geo Eliot wasn't one of the sites anyway - but the old Warwickshire Heath Authority had - possibly still has, I wouldn't know - quite close links with Thames Valley HA  and in particular the John Radcliffe hospital.  Hence it is possible that if Oxford Uni Med School were up to something or another, and needed more participants, they'd likely ask Geo Eliot to participate?


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## mr self destruct (May 8, 2017)

Thanks for the replies all, and wow Jenny that's really encouraging to read! 
I'm with Dr Sankar now myself (since last October) at St Cross. In fact, I'm off there tomorrow to get hooked up to an insulin pump. And you're right, the care at St Cross is so much better than anywhere else I've experienced so hopefully things are going to improve for me. It's strange how you lose your grip on things when feeling low, I honestly thought I'd first posted my questions on here last year. Turns out it was a little longer ago than that!


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## stephknits (May 8, 2017)

Good luck with the pump, let us know how you get on - I'm starting with one on 16th May.  Hello and welcome back by the way!


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## Pumper_Sue (May 8, 2017)

mr self destruct said:


> Thanks for the replies all, and wow Jenny that's really encouraging to read!
> I'm with Dr Sankar now myself (since last October) at St Cross. In fact, I'm off there tomorrow to get hooked up to an insulin pump. And you're right, the care at St Cross is so much better than anywhere else I've experienced so hopefully things are going to improve for me. It's strange how you lose your grip on things when feeling low, I honestly thought I'd first posted my questions on here last year. Turns out it was a little longer ago than that!


Good luck with the pump, if you haven't bought it already please do invest in the book pumping insulin by John Walsh, it's known as the pumpers Bible and worth it's weight in gold.


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## mr self destruct (May 11, 2017)

stephknits said:


> Good luck with the pump, let us know how you get on - I'm starting with one on 16th May.  Hello and welcome back by the way!



Well, I had it fitted Monday and wow! Just wow! My BG ranges between 7 and 15 daily, yet after 24 hours on it it never went outside 4.2 - 7.8. It's amazing!


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## stephknits (May 11, 2017)

Sounds amazing!  What pump have you got?


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## Pumper_Sue (May 11, 2017)

mr self destruct said:


> Well, I had it fitted Monday and wow! Just wow! My BG ranges between 7 and 15 daily, yet after 24 hours on it it never went outside 4.2 - 7.8. It's amazing!


I hate to burst your bubble but after a couple of days things tend to go t*ts up, this is when all the hard work and I do mean hard work begins basal testing and adjusting basal rates sorting out your carb ratio and correction factors etc.
Very much worth the effort at the end of the day though.


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## mr self destruct (May 11, 2017)

Ah ok, glad you mentioned it! 
The nurses did say that next week I'll be fasting for parts of the day to see how the basal rate affects me. That might be when the hard work begins. 

Stephknits, I have an Accu-Chek Spirit Combo which links via Bluetooth to an Accu-Chek Aviva Combo bg meter. I'm really impressed with both. Good luck with yours next week!


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## trophywench (May 11, 2017)

I was only talking to Roche today - and the Tech help girl also had a Combo and now has an Insight same as me - and we both said the Combo was a LOT more bullet proof than the Insight is.  Much more 'user friendly' we both think.  If I didn't hate 'filling syringes' so much - reminding me of how stuff was when I was first diagnosed - and the reservoir being so huge (10 days supply for me if I'd filled it) - in a number of ways I wish I'd had another Combo.  Wonder if they'll still be available at my next update LOL (about another 1200 days I think!)

I'd totally miss being able to leave the pump alone and just have the meter/handset in my hand to do it all.

Sue remembers me when I first had the Combo - like you first week was pretty great.  However after the next 3 weeks I was about ready to throw it out the window.  I had to gather all my resources and give it a damn good talking to (of course I was really telling myself off LOL) - and actually said 'at' it, I'll be buggered if a bit of plastic and a few PCB's like you is going to beat ME - so put that in your pipe and smoke it! 

And of course - it wasn't actually that hard.  The thing that hits everybody is - we all did things virtually instinctively on MDI by that juncture in our diabetic journey - and will a new 'system' - none of us can, until we get used to it.  But like most things - we all got used to it pretty quickly after that - and started knowing automatically what to do, when, once more!


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## mr self destruct (May 13, 2017)

Sounds like I have a bit of a bumpy road ahead then.
Not been a good day so far, it seems like every time I do a bit of moderate exercise (I built my daughter a wooden slide and loaded a car onto a trailer) my bg drops below 4. Having said that, it peaked at 9 so it's a lot lower generally, which can only be a good thing.

Also, I have that book on order so hopefully things will stabilise once I know what I'm doing.


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## trophywench (May 13, 2017)

LOL - knowing what you're doing is a quest we've all been on!  I'm not too sure I've got any more than an O level in it even now, though!


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## mr self destruct (May 14, 2017)

Haha I'm only just old enough to know what O-levels are!


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## trophywench (May 14, 2017)

mr self destruct said:


> Haha I'm only just old enough to know what O-levels are!



I was glad of my Biology teacher telling us about diabetes, some 6 years later when I was diagnosed - whereas, similar to learning then that the earthworm is a cosmopolitan - I had just assumed I'd never need to know about that again  !


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## mr self destruct (May 30, 2017)

Ok so it's been a couple of weeks with the pump now, and yes it's a bit of a rollercoaster as regards the bg levels. We're currently playing around with various basal rates and adjusting as necessary, but I've had daily hypos which is scary. I'll stick with it though.


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## Northerner (May 31, 2017)

mr self destruct said:


> Ok so it's been a couple of weeks with the pump now, and yes it's a bit of a rollercoaster as regards the bg levels. We're currently playing around with various basal rates and adjusting as necessary, but I've had daily hypos which is scary. I'll stick with it though.


I hope things settle down soon


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## mr self destruct (Jun 3, 2017)

Cheers bud, it's nothing a ready supply of jelly beans can't sort.


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