• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

desperate for help !!!!!

A

aw68

Member
Messages
5
Hi I am looking for advice/help for my partner. He has been a type one diabetic since he was 17, he is is now 44. He has struggled with his sugar levels for the last ten years which culminated with him being put on a pump four months ago. The last four months have been a nightmare for him as he has struggled massively to find some control. He has had hyper after hyper...twiddled with his basal...then boluses then IC ratios and then diet...none of which has given any more than one or two days stability and I feel absolutley awful for him as i watch his world get smaller and smaller...he is constantly writing down food and BG levels in a bid to find out why his sugars are so out of control and he is just getting nowhere with it at all to the point where he came off the pump two days ago for a break from it all and to see if with the change of diet and healthier lifestyle the pen might work for him.....on the plus side going back to the pen made him realise all the reasons he went on the pump in the first place (repeated hypos and sugar level swings) on the down side he just does not knwo where to go with it all now. He is planning on going back on the pump tomorrow but does not know where to turn with it all.....he has lost over a stone in the last few months and in his own words is just living "diabetes" at the moment....I feel very concerned for him both mentally and physically and I have spoken to the diabetes nurse and doctors but seem to be getting no where with it at all.the support we have here just seems ludicrous to me...I understand that sometimes it can take months to get used to being on a pump but does anyone have any ideas at all on what could be happening for him..???...he is on an animas pump...would be grateful for any help or advice at all...or for any comments from any one that has had a similar experience...many many thanks..
 
Hi, it sounds like you are both going through the mill.

Do you think the problem could be trying to change too many things at once? I know when nothing seems to be right, it's very tempting to try adjusting more than one thing, but then that makes it impossible to see what has affected what.

Has he tried different insulin in the pump? I use Apidra because of its rapid and short action compared with Humalog and Novorapid. I find that the shorter the action, the more predictably it behaves. This made long acting (pen based) insulins very difficult for me to manage and meant that the pump has been a vast improvement for me compared with injections.

If he hasn't already read it, a good book about pumping might help - Pumping Insulin by John Walsh has been recommended to me many times.

I hope you can both get some improvements so you can stop focusing on the diabetes.
 

First of all has he actually done any proper basal testing? http://diatribe.us/issues/13/learning-curve
2nd has he got the book pumping insulin by John Walsh ? If not he needs to buy it sooner rather than later.
3 What insulin is he using and what duration of insulin has he got set on his pump. Has he been changed to a different insulin than he used on MDI?
4 Is he def filling his tubing and cannula when he changes either set or and cartridge?
5 What cannula and length is he using?
What are his hospital team doing to help him.
 
Hi Thank you both for your response...to answer your questions...we have done basal testing over and over again...it seems that when he eats his sugars just creep up ...have tweaked IC carb and changed to combo boluses etc etc etc...tried every differrent twek he can but it seems there could be a variant missing???...he is on Novorapid...but the change of insulin could be a really good idea ...we are going to look into it today...really want to try to address it...the pump is back on this morning but really keen to keep the sugars down and he has been recalled by the retinopathy specialist as there is some degeneration.. have read john walsh ..pumping insulin and still refer to it now..he does fill reservoir and tubingh every time...and we constantly check sites and change them.....as far as the cannula and leads go ...we have just ordered some different lengths of tubing to see if that makes a difference and changed the site from abdomen to buttock....looking to see whether it is a delayed gastric issue...
Thanks for your help ...will plough on..!!!
 
ps the cannula sets are inset 2 (animas) 23 inches and 9 mm cannula...
many many thanks
 

Hi,
Perhaps try a steel cannula instead of tethlon or try an angled set? Length of tube will make no difference at all. Does hubby also leave his old set in for a couple of hours after he has changed the cannula. There's no need to change both cannula and cartridge at the same time either. Just change cartridge when empty or every 6 day's if a low insulin user.
Timing of insulin, how long does he bolus before he eats?
Just as an experiment perhaps use the pump for basal if you say that is correct and then bolus with a pen or syringe. If he finds his numbers improve doing this I would suspect he has wrong length of cannula.
Also to help iron things out have you thought of having exactly the same amount of carbs at each meal time and the same type. ie, skip slow release stuff like pasta and rice.
Things like that will help to sort the problem.
I had the problem of awful numbers each time I bolused and kept blaming the pump but it was actually the cannula length that was the problem.
When he next removes his cannula have a look at the tip of it and see if it is pinched at all.
 
Hi

I have a feeling that a change of insulin might well help. I'm thinking this myself as Novorapid appears to take too long before it starts to lower and because I've needed to use so much to get myself back to being 2mmol above my before I eat bg level, its action goes on for at least 4hrs and then I find myself at times going a tiny bit low. I've done hourly basal tests and have altered all my basal rates so that my bg levels are more or less at the same level. I'm now trying to remember to bolus in advance for the carb that I'm going to eat but its difficult to know exactly what amount of carb you are going to eat until you see it on your dinnerplate so I just bolus 15min in advance for 20g carb and then if 15min later I see 35g carb on my plate, I then just bolus for the difference. This appears to help a bit.

I too have changed from using the straight in teflon and steel cannulas as they appear to be so unpredictable according to where they are inserted. Ive had loads of failed sets that Ive needed to pull out but when looking at them they appear to be ok and not kinked. It does get a bit desparing at times... and I often find myself needing to resort to using my insulin pen which does the trick even when inserted very near to where the infusion set has been placed. Things would be more explainable if I had done loads of insulin pen injections into my tummy when using MDI but as I never did that and just used my arms and bum no one can say really that its scar tissue.. so it must be the sets. I am now (fingers crossed) using the Tenderlink and although I dont like inserting them.... they are giving me far better bg levels, so that I am happy to put up with that..
 
Thanks to all of you for responding...we have ordered today a variety of different cannulas...types and sizes...animas were really helpful there...and we are now looking into his insulin and whether to try a different type....the good thing about going back on the pen for a few days was it really reinforced how necessary a move to the pump was...if we can get it tweaked right!!!...pretty much think he has the basal right so we are now looking into all the other variants, in particular sites...cannulas...and insulin....
i really really appreciate all this advice ...we have been pretty much struggling on our own with this for the last four months and I am really keen that he doesn't feel that he has no other options left to him...In fact just hearing how it has been for other people has been an eye opener itself...
kind regards everyone will let you know how it all works out...
 

I would suspect it's a cannula problem more than anything due to the fact you say he is hypoing using a pen. Same insulin in pen and pump means insulin not the problem.... Simple logic
As I suggested before try doing the bolus via pen and leave the basal running on the pump. Just ask the pump how much insulin is needed for the bolus and then disconnect the pump and bolus. This way you have the insulin on board recored. Once you done that bolus by pen and see what the result is.

Edited due to wrong word used should have been basal not bolus, now in bold
 
The obvious thing I see here is he might be developing insulin resistance? If triglycerides are elevated that would be another indicator of developing insulin resistance. High insulin levels is what causes insulin resistance and this can happen even in type 1s. The answer - diet and exercise and lower insulin levels. Has the doctor EVER checked his insulin levels? Probably not...
 

This is not the case.
If you reread the thread you will see the problem lies in the delivery of the insulin. He's fine with the pen but the problem is with the delivery from the pump. Which boils down to wrong cannula from what I can work out.
 
You must log in or register to reply here.
Menu
Log in
Register
Cookies are required to use this site. You must accept them to continue using the site. Learn More.…