Secondary diabetes!

[TwinkleToesKirsty]

There's not a section for me here (Boohoo) as I have secondary diabetes! Mine was caused by years and years of steroids, which completely knackered my pancreas and stopped it working full stop!

I've had secondary diabetes for about 4 years now. My pancreas has officially packed up and I don't produce any of my own insulin and have pretty much the 'typical' T1 treatment.

Has anyone here tried a CGM and if so did you self fund? Was it expensive!? I'm very tempted but don't have a chance of getting funding as I'm in the grey area of no NICE guidelines!!



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[noblehead]

Yes we do have members who self-fund their CGM, hopefully they'll see your post and reply.

 

[Spiker]

Officially, running a CGM will cost you £70/week for sensors and transmitter, over and above the initial setup costs of around a grand. Using unofficial tips and tricks you might get this down to around £20/week or less.

 

[DunePlodder]

There's not a section for me here (Boohoo) as I have secondary diabetes! Mine was caused by years and years of steroids, which completely knackered my pancreas and stopped it working full stop!

I've had secondary diabetes for about 4 years now. My pancreas has officially packed up and I don't produce any of my own insulin and have pretty much the 'typical' T1 treatment.

Has anyone here tried a CGM and if so did you self fund? Was it expensive!? I'm very tempted but don't have a chance of getting funding as I'm in the grey area of no NICE guidelines!!
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Hi Kirsty,
I am one of the self funders. I have a Dexcom G4.

It is expensive. I paid about £1100 for an initial set up. This includes a transmitter, receiver, and 2 sensors. I got it from Advanced Therapeutics on a trial basis. If you decide to return it you still have to pay for the sensors.

Sensors cost £257.50 for 4. They are only guaranteed for 7 days but most people use them for longer than that.

In your circumstances it would surely be worth applying for funding - the worst they can say is no!

 

[TwinkleToesKirsty]

Thanks do you know how I apply for it? Do I have to go through my consultant or is there another way of doing it?

Because I've got a rather complex medical condition, I've got very reduced hypo awareness and often don't notice that I'm having a hypo until I've become too dizzy to stand! I keep a tube of hypostop in a pocket or tucked in the top of my little meds bag that I carry everywhere. But I always have it in an arms reach, as I live alone and I know that if I didn't get that hypo stop into me there wouldn't be anyone there to give me the glucagon!

To me a CGM would be a life changer!

I'm having the same trouble with pump therapy. There is no recommendation for pumps in secondary diabetes, and so I don't meet the funding requirements.

It's really annoying, cause in terms of treatment mine is identical to a T1! If anything a pump could be even more beneficial for me, as I have lots of days where I have to increase my insulin doses due to being on extra meds. They have agreed the best way to do this is to add 20% on top of my dose. On some days I have to take 10% from my original, and I've heard that many pumps will do that for you!


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[Flowerpot]

Hi Kirsty

Do you go to a hospital diabetes clinic? Any request for a pump or for CGM funding would come through them and need to be supported by your diabetes consultant.

A pump could help enormously with the erratic insulin needs you are experiencing as it gives you a great deal of options for this, setting different basal rates, using temporary basal rates and making quick specific changes to your control.

On the CGM funding front, it is a grey area depending on the problems you are facing and even then it doesn't mean you will be successful. For that reason you would probably be in the same boat as any Type 1 who puts in a funding request, it is an individual consideration. Loss of hypo awareness is the main reason for funding requests. Worth while asking about it as you never know what the outcome might be.

Discuss the problems you are having with control and hypos with the clinic you attend.. It seems unfair that you are not covered by any guidelines for pump therapy despite having a defunct pancreas. I hope you get some help with your control. Good luck.