Is CGM the way forward??

[Deleted member 45091]

Hi all new to this, after 20 odd years finally would like to put some of my experiences and opinions across so you might hear from me a little from me now lol.
My topic today is CGM continues glucose monitoring. At present my diabetes is abit poorly controlled last HBA1C 10.2.
Seen my diabetic specialist today and told him wasnt bothered about a pump and tried to push for a continuoes glucose monitor, as always not funded and costs too much. At the moment gone back to my old insulin Humilin M3 twice a day which suits me alot better. I had excellent HBA1cs up untill about 6 years ago and the docs convinced me to try Nova Radid 4 times a day etc, i lost aload of weight and havent quite got it under control since.
Some people are fine on that regime but after a couple years demanded to go back on my faithfull Humilin M3.
However my body has changed alot since then. As ive explained countless of times i can feel hungry etc with sugars of around 10mmol. Obviously with high sugars over long periods your body changes so i could feel hypo when my sugars are in the normal range.
As my current GP has kindly restricted my testing strips and issues me one box at a time which is a different topic alltogether, i thought about all ways for my diabetes better controlled without hypoing all the time.
It all lead to a CGM.
As i explained to my specialist if i could get i good idea of roughly what my sugars where all the time, when they were in the normal range id be inclined to leave them and catch a hypo before it occurs. If id feel hungry and sugars where ok i would leave it a while longer. Id feel more confident while out and about doing things. At present and i dont think iam the only one, as ive got a little older sometimes i eat when iam out the house because i may fear a hypo while out. So to some it up with a CGM id feel more confident having extra insulin when sugars are high, id feel more confident leaving my sugars longer in the normal range instead of eating just incase i go low. Sugars can vary different alot of times during a day, being resticted on tests strips dosent help. a CGM would vastly improve and give me the confidence to take control and elimate hypos. Why cant i get one?? One answer cost, Whats the point in advanced technology when its not available? So at present just waiting to win the lottery to get health back on track lol. More topics coming soon including my rubbish experences when going into hospital.. lets just say i take al my own meds sugar drinks and snacks and my faith when going in is now about 0. Sorry for going on just geting frustrating having to fight tooth and nail for basic essentials for diabetics suppiles.

 

[smitha48]

Hi Danny,

Have a look at NICE guideline CG15.....It gives some info to HCP's on CGM use in patients.

Good Luck

 

[jopar]

No CGM isn't the way forward!

There isn't a guideline for CGM's, CG15 Diagnosis and management of type 1 diabetes in children, young people and adults, is the main guidance to how we treated, yes CGM is mentioned by as a assessment but like the insulin pump (which is also mentioned) it would have to have a standalone Guideline for it's implementation in funded to treatment, as it stands there is no intention to create a guideline for them, so they can only be obtained either privately funded or under a 'special case' funding by the pct..

What you need to do, is contact your consultant and ask him to write to your GP telling him/her that s/he has to increase your test strips to a acceptable level.. You also ask if they do a carb counting course, if they do then can you be placed on it!

Also take a look at this site www.bdec-e-learning.com/ this is Bournmouth hospital diabetic carb counting course, this will help you to start understanding carb counting, you can also back this up with getting yourself 'Using Insulin' by John Walsh which tells you all about the boulas/basal (MDI) insulin therapy..

So that you can start using your insulin effectively and start getting your levels down into the normal range.. Phantom hypo's well it's likely that you going to suffer these with or without a CGM when the body is adjusting back to normal ranges.. 2 things you can do, is either sit them out or you can fool the body that you've treated the phantom hypo by eating something carb free, such as cheese or something protein based or something like sugar free jelly, this helps to subside the symptoms quicker and won't impact on the blood sugar levels..

Oh, I would also have a word with your GP asking and explaining how many times you need to be testing, and why which is basically that you can't eat without knowing your blood glucose levels, as you need to adjust your insulin dose for this etc..

 

[Unbeliever]

Please o take note any T1s who think test strip issues are a matter only for T2s.! Yet MORE proof that it isn't.

 

[phoenix]

Lots of testing won't be that useful whilst using a mixed insulin since you can't alter the proportions of rapid to basal. Similarly with a CGM.
I think for a few people that a CGM may be very useful, for example those people who have no hypo awareness (and aren't able to regain it) and those who have no pancreas who may have similar problems but I think for most they are perhaps better used as a temporary measure in order to determine whats happening whilst fasting and enabling people to fine tune insulin.
The link Jopar gave is very good but is only of use if you are using a basal/bolus regime.

 

[Deleted member 45091]

Hi, to be fair as stated i get a box at a time but thats once a week so i can test up to 7 times a day its just a nuisance going to get my perscription as i use a box a week. As for carb counting i attended the Dafne course years ago i pretty much know what sort of carbs and how quick they send my sugars up etc in most foods. Like i said as before my bodys changed and sugars can change rapidly, my problem is when i get hungry, and as they dont want me testing i usually eat. I put it to them ok but the other day i felt exactly the same when i had an hypo as i did when sugars are high. Ive been told about phantom hypos etc. But simple fact is even if my sugars in normal range or a little bit higher once tested sugars i tend to eat as iam geting more limited for testing, and i probably eat jst incase from having a hypo when out. For years i only tested 1 or 2 times a day never took my glucose meter to school for all them years and yet always had a spot on HBA1c. I knew my body when alot better and where my sugars are. I dont think iam speaking alone, if people are expected to feel comfortable adjusting insulin and changing diet etc then they should also feel comfortable to know where the sugars are at any given time. For me personally iam in a catch 22 i can feel sick shaky with normal sugars, i cant test when i feel like this as its a large amount of the day if i eat it makes my sugars worse. And what happens if i do neither and yes just over ride it and it could be an eventually hypo.

It all comes down to where your diabetes is, luckily ive never had dka or any eye surgerys etc but iam sure it will only be a matter of time before diabetes complications arrise. If id at least try this thing and it didnt work then fair enough. But iam nearly 100 percent sure if i was on it for along period id be more inclined to overide these feelings not eat for the sake of it and be more confident with my insulin increase and diet changes. But as before cost is always the issue. The goverment can pay for the upkeep of people breaking the law 3 square meals a day gym access etc but shun you when you want the tools to manage your condition a little better. Same old same old, as it stands il contiue fighting at the moment just to get some extra glucose strips.. 17 pound a box ive chipped into my rent money a few times to buy them and i dont even work. Wellcome to britain 2012

 

[Deleted member 45091]

Oh hi and in regards to that iam sort of doing my own thing now as i loose more faith with docs and the NHS each day, I do 2 injections each day and always have prefred to keep body in routine, but also have nova rapid if needed. But thought alot about it but untill iam comfortable with knowing what my sugars are il be reluctent to increase insulin eat less etc.

 

[jopar]

I didn't realise that you had gone back to 2 injections a day...

But from what else you've said, a GCM isn't going to help you at all... It actually works on a time lag due to it's monitoring body fluid and not blood.. It's got to be calibrated and if it give's a warning of high or low BG then you've got to take finger stick test to double check reading and act on the meter!

The only reason you feel naff when your blood glucose in the normal range is because your body isn't used to it, and having a CGM isn't going to make any difference...

As you say that you've done the DAFNE course, and decided to revert back to 2 injections.. Fair play, but you've got enough information then to sort out your control.. If you haven't got enough test strips to do so then you need to tackle your GP concerning this.. You have the information you need to argue your case with him, and also you can get your consultant to write to your GP to tell him more test strips...

The ball of good control is totally in your court it's up to you...

But which ever way a GCM at this present time will do nothing what's so ever for your control...

 

[Deleted member 45091]

Thanks for reply but i beg to differ. My diabetic specialist says the doctor can perscribe what he wants, I will never go without my stuff, ive had to buy and borrow from chemists and even their geting fed up with it. OK it may mean me skipping bills to buy my medication but my health comes first. My specialist said i can try a CGM for a week i was going to say dont bother but iam actually going to try it. Ive got to the stage where if i feel comfortable and better with it il pay for it myself and i dont even work, more bills going to be missed. I do have alot of knowledge and part of it may be my fault, as i can still eat a snack when my sugars are above 10. I just dont like the current attitude torwards diabetes in the UK. I know theres alot of good diabetics with good HBA1cs and there attituded its up to you to take control. My problem is they are shunning the idea before ive even tried it. I know my body and what i coan do with that so they should listen abit more. Even down to my local chemsit attitude, having a discusion about testing, well if you only inject twice a day you should only need to test twice a day. Also every diabetic is different some people can try everything and still struggle with it. Iam not saying il feel better staright away.. And I know the CGM is different from gm done my reseach. But ive been on both sides of the fence, had excellent HBA1cs for years and now struggling. Alot of good control isnt just about knowledge its also about putting the knowledge and having the confidence to put it into practice. If iam wrong il eat my words. MY from my opinion I know a CGM like said before give my a phycoogical confidence boost to manage my diabetes better.

 

[noblehead]

Danny,

One box of test strips isn't anywhere near enough to control type 1 diabetes, I suggest you ask your diabetes consultant to write to your gp and demand that he increases this amount immediately, I did this last year when my own gp was moaning about the amount of strips I was using but soon backed down once my consultant wrote to him.

 

[iHs]

Hello danny

I was going to recommend that you eat 'little and often' on twice daily insulins and to eat to your meter but as you cant get sufficient teststrips from your GP at the moment then it's obviously not easy to keep yourself well and remain somewhere on the straight and narrow. I hope very much for your sake and also for many others facing restriction that your GP does prescribe you enough strips. Have you contacted your PCT about this matter and also your MP? My MP sent me a copy of a letter he had received from my PCT regarding teststrips being restricted in 2007. I phoned my PCT who then phoned my GP and got my teststrips prescribed again t o 150 which was much better than just 50.

I wish you all the best with your trial of a CGM. My friend has got one and likes it when it works all ok but sometimes has problems with it as some of the results are way off due to faulty sensors.

Something that isnt yet available in the UK but probably will be later this year is the C8. I have no idea how good or not good this device will be but worth looking at.............