trying and failing!

[sianee]

hi all,
i was wondering of anyone knows about this new 'artificial pancreas' pump??? is it available in the uk? what is the criteria?
i have heard its been proven to improve blood sugar by 15% and is very useful for people with poor control. i have been struggling with controlling my blood sugar since i got diagnosed, hospital/doctors haven't been particularly helpful, very good at telling me what i need to do though. i try and try to get my diabetes under control and every time i fail miserably I'm really interested in this new pump, I'm desperate to try anything that'll make my life and my diabetes easier to manage. I'm already starting to notice affects of my badly controlled blood sugars. i have carpel tunnel syndrome, tingling in my hands and feet, my eye sight is now starting to suffer and i generally feel rubbish all of the time. im only 23! i want to be in control of my diabetes, not have my diabetes controlling me!
sending my best wishes to my fellow D's xxx

 

[Twitchy]

Hi Siannee, sorry to hear you've been having a tough time. I don't know anything much about the closed loop / artificial pancreas system but I suspect it won't be mainstream for years to come. How is you diabetes treated currently? Are you on mdi or a pump? I know you said the doc are giving you loads of instructions already but maybe someone amongst us can offer some 'real life' tips that have helped them... 🙂

 

[Adrienne]

I was at a conference at the weekend and sat in on one session on the closed loop or artificial pancreas. Wow. Still reckon it is a few years away yet but it is mind blowing.

It seems that basal rates are not the 'in' thing on it but a series of constant bolusing, small bolus' all day long. The problem at the moment is that insulin is not quick enough so they need quicker insulin - novorapid is just too damn slow 🙂

It was a fascinating session and as soon as I see any links to it, I'll post on here

 

[Lauras87]

The tingling in your hands will be from the carpel tunnel, I have it too & had 1 operation & steriod injections in the other.

What insulin you taking? & what units?

Ill try & help you with the carpal tunnel as I've had it for maybe 18 months now.

 

[sianee]

thanks for the replies guys,
disappointed that the pump isnt available yet.
im taking 35 units of glargine and 25 units humalog. when my sugars start to fall i get horrific pain in my side and the worst cramp in my legs i can't walk! this has been happening since i got diagnosed and as of yet the doctors/hospital/various specialists cant work out why.
as for my carpel tunnel, i've been suffering with that for about 2 years now, i need both wrists operating on but my consultant says i cant have them done until i reduce my hba1c dramatically. so really, im stuck between a rock and a hard place.

 

[brett]

hi all,
i was wondering of anyone knows about this new 'artificial pancreas' pump??? is it available in the uk? what is the criteria?
i have heard its been proven to improve blood sugar by 15% and is very useful for people with poor control. i have been struggling with controlling my blood sugar since i got diagnosed, hospital/doctors haven't been particularly helpful, very good at telling me what i need to do though. i try and try to get my diabetes under control and every time i fail miserably I'm really interested in this new pump, I'm desperate to try anything that'll make my life and my diabetes easier to manage. I'm already starting to notice affects of my badly controlled blood sugars. i have carpel tunnel syndrome, tingling in my hands and feet, my eye sight is now starting to suffer and i generally feel rubbish all of the time. im only 23! i want to be in control of my diabetes, not have my diabetes controlling me!
sending my best wishes to my fellow D's xxx

Sorry to hear your having a bad time. Have you ever given another type of insulin a go? When I was diagnosed I was on lantus which used to give me very bad.muscle cramps and a terrible pain in my sides. Many people are fine with it just didn't agree with me. Might be your insulin you are using just doesn't suit you, worth a try.

Have you considered a pump, not the artificial pancreas one just the external pump that can connect via blue tooth to the monitor. Just got mine today and its so versatile and able to give minute dose adjustments for greater control. Have a talk to your dsn/consultant about one. Hope your on the mend soon

 

[Lauras87]

Your diabetes consultant or the consultant you are seeing for the carpal tunnel?

Have you have any steriod injections? You can have at least 6 months relief from it all.

What was your last hba1c if you don't mind me asking?

 

[sianee]

I've been told I'm not eligible for the pump. I've tried a few different insulins now, seem to have the same symptoms no matter what.
my last hba1c was 152 !!
my diabetes consultant said i can't have the surgery on my wrists yet, had injections but hasn't had much of an impact. its getting so severe now I'm struggling to lift things and do my job properly.

 

[Lauras87]

I've been told I'm not eligible for the pump. I've tried a few different insulins now, seem to have the same symptoms no matter what.
my last hba1c was 152 !!
my diabetes consultant said i can't have the surgery on my wrists yet, had injections but hasn't had much of an impact. its getting so severe now I'm struggling to lift things and do my job properly.

You need to be seem by a specialist for your hands & it's down to them to operate.

Are you on set doses of insulin?

 

[Adrienne]

Hiya

Are you just taking your consultants word for it about not being eligible for a pump? I have met so many consultants who really do believe their own rubbish and it is utter rubbish sometimes.

Can I suggest that you look up the NICE guidelines for pumps for adults. Sorry don't know how old you are but would presume you would be under the adults guidance, apologies if I got that wrong.

 

[Lauras87]

Can I suggest that you look up the NICE guidelines for pumps for adults. Sorry don't know how old you are but would presume you would be under the adults guidance, apologies if I got that wrong.

I'd check nice guidelines but I think you need your consultants backing too.

 

[Adrienne]

I'd check nice guidelines but I think you need your consultants backing too.

Ah ha yes but if you can get the NICE guidance and you fit it then you can argue like mad with your consultant and go for it in a big way. See this is where we mums excel. We want the best there is out there for our kids and we will fight and we have learnt to fight for what we feel is right and the best. So if you feel the same and you want a pump and you fit the criteria you make your consultant see it from your point of view as well. If he won't then change hospital. That is the easy bit. Really it is easy, loads of us change hospital to suit the care for our kids. Find a hospital that will give you a pump and change to it via your GP under the Patient Choice.

We travel 3 hours there and 3 hours back in one day to get the best care out there and its worth it big time

 

[everydayupsanddowns]

im taking 35 units of glargine and 25 units humalog...

So sorry that you are struggling so much Sianee.

Slightly confused by your post about insulins though...

Firstly: When do you take your Humalog, and what apporach do you have towards the carb content of your meals? Have you had any training/help with carb counting?

Secondly: Why are you taking 35u of Glargine - have you tested it to see whether that dose is right?

You can read about Glargine (Lantus), what it is supposed to be doing, and how to adjust your dose here: http://www.diabetes-support.org.uk/info/?page_id=120

Thirdly: I'm completely mystified as to why you have been told you are not eligible for a pump. One of the NICE criteria is a persistently high HbA1c despite being on analogue insulins - which you are!

Hope you get some better support soon

 

[sianee]

So sorry that you are struggling so much Sianee.

Slightly confused by your post about insulins though...

Firstly: When do you take your Humalog, and what apporach do you have towards the carb content of your meals? Have you had any training/help with carb counting?

Secondly: Why are you taking 35u of Glargine - have you tested it to see whether that dose is right?

You can read about Glargine (Lantus), what it is supposed to be doing, and how to adjust your dose here: http://www.diabetes-support.org.uk/info/?page_id=120

Thirdly: I'm completely mystified as to why you have been told you are not eligible for a pump. One of the NICE criteria is a persistently high HbA1c despite being on analogue insulins - which you are!

Hope you get some better support soon

i take my humalog before my meals. as for carb counting, i havent had any training in it and know very little about it. my dsn has recommended a course but it has a long waiting list by all accounts. still waiting.
im taking 35u of my glargine as thats what my dsn has advised me to take.
i asked a while ago about the pump and was told that until i have better control of my blood sugars the pump isnt an option for me yet. im going on what my dsn and consultant are telling me.

 

[Twitchy]

Oh my, are they serious?! How exactly are they expecting your control to improve without their help in carb counting traing, dose adjustment etc?!! And what exactly do they expect you to do in the meanwhile?! Sounds like a Dafne course would be ideal but as that sounds unlikely I think you're going to have to self educate - there's a book Northerner always recommends that I think is by Ragnar somebody (someone help me out here please?! 😉 ) I think it's called something like 'Type one in children & adolescents' or something... And 'think like a pancreas' is good too...time to hit Amazon I suggest. Did thd nurse explain how they came to set your doses, or what to do with your quick acting vs carbs at all? Ask lots of questions, I'm a bit muzzy headed at the mo but there are some very switched on people on this site who will be able to offer help. 🙂

 

[Mark T]

Oh my, are they serious?! How exactly are they expecting your control to improve without their help in carb counting traing, dose adjustment etc?!! And what exactly do they expect you to do in the meanwhile?! Sounds like a Dafne course would be ideal but as that sounds unlikely I think you're going to have to self educate - there's a book Northerner always recommends that I think is by Ragnar somebody (someone help me out here please?! 😉 ) I think it's called something like 'Type one in children & adolescents' or something... And 'think like a pancreas' is good too...time to hit Amazon I suggest. Did thd nurse explain how they came to set your doses, or what to do with your quick acting vs carbs at all? Ask lots of questions, I'm a bit muzzy headed at the mo but there are some very switched on people on this site who will be able to offer help. 🙂

Newbies useful link thread! http://www.diabetessupport.co.uk/boards/showthread.php?t=10406

Type 1 Diabetes in Children Adolescents by Ragnar Hanas

Also a link to the online BDEC carb counting course.

 

[Northerner]

The book is Type 1 Diabetes in Children, Adolescents and Young People by Ragnar Hanas - well worth getting hold of. The library may have a copy.

It really does sound like poor care to me. I would also recommend having a look at the online carb counting course at http://bdec-e-learning.com/ (free and very good), also the free Carb Counting guide from Diabetes UK at:

https://shop.diabetes.org.uk/store/literature/information-books/carbs-count-e-book.aspx

 

[Twitchy]

Thanks chaps - told you, muzzy headed still! 🙄

 

[Adrienne]

Well that is appalling isn't it. If MDI is failing then a pump is the next thing to use as that can help make control better. You don't wait till you are doing ok and then get a pump, you will not fit the criteria then !!!! Me thinks they are pulling a fast one 😡

Yep Ragnaur Hanus book and also Think like a Pancreas by Gary Scheiner. They both have just had updates on their books so make sure you get the updated ones if you get them

 

[bev]

Hi Sianee,

I wouldnt wait for a carb counting course - it is so easy to teach yourself. It really isnt complicated at all - the more difficult bit is working out your ratio's - and is down to trial and error until you get it right. Can we help on carb counting - what is it that you dont understand?🙂Bev