• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.
  • We seem to be having technical difficulties with new user accounts. If you are trying to register please check your Spam or Junk folder for your confirmation email. If you still haven't received a confirmation email, please reach out to our support inbox: support.forum@diabetes.org.uk

Newbie on a quest

Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
M

mr self destruct

New Member
Relationship to Diabetes
Type 1
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? :D

Cheers,
Jonny
 
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
 
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.
 
Welcome to the forum Jonny 🙂
 
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. :D

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. :(
 
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
 
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! :D
 
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! :D
Click to expand...

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!
 
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!
Click to expand...

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.?
 
Hi Slipper, I started a new thread on the topic in the General Messageboard 🙂
 
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?
 
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.
 
Hi I remember you Jhonny so sorry to hear all off your troubles m8. x
 
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?
 
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, let us know how you get on - I'm starting with one on 16th May. Hello and welcome back by the way!
 
Status
This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Back
Top