Brittle diabetes/Double diabetes

[baldrick040561]

Hi. I am 54 and have been a type 1 diabetic since my early twenties. My sugar levels have fluctuated for the past few years and I am now on an insulin pump. I have problems with my eyes - retinopathy etc and I am having Lucentis injections to both eyes on a regular basis. I also neuropathy in both feet and lower limbs which has led to Charcot foot in my right foot for the past 12 months. I have also had problems with arrhythmia so had an ablation earlier this year which seems to have helped. I also have ED and have now been told that I may have gastropareis or gluten intolerance for which I am now awaiting tests.

My sugar levels are all over the place for no apparent reasons with lows (2.7) and highs (19.7). I have no hypo awareness so I test regularly. Has anybody else had same problems and do you think it could be Brittle diabetes, Double diabetes or something else?

 

[noblehead]

Hi and welcome to the forum.

I found the following on the community pages of DCUK explaining what Brittle Diabetes is:


http://www.diabetes.co.uk/brittle-diabetes.html


Out of interest, what does your diabetes team say about your control, the usual advice is to check that your basal rates are correct, have a read of the following which offers some good advice on basal testing:

http://www.salforddiabetescare.co.uk/index2.php?nav_id=1007

 

[Flowerpot]

Hi baldrick

I'm in a similar position to yourself.

I've got Charcot in both feet and ankles and am in casts, partially sighted, kidney disease and autonomic neuropathy with no hypo awareness. I have been described as having brittle diabetes.

My blood sugar has been increasingly stable -more low than high- since using a pump and I also use CGM to alert me to hypos as I was going unconscious without warning. That has revolutionised my life and I feel a lot safer.

If you do have gastroparesis that could account for unpredictable and widely swinging blood sugars due to delayed absorption of food. No hypo awareness for me means a complete lack of awareness of highs and lows, I couldn't tell where my bg was and even with lots of testing I was swinging around quite a lot.

As noblehead suggests, try to rule out any swings caused by basal rate problems. Can you ask your diabetes team about the loan of a CGM or perhaps consider the Libre which measures interstitial glucose via a sensor and reader as so much goes on blood sugar wise in between finger blood glucose tests and there maybe things you can tweak to get a flatter, more stable blood sugar. Good luck, it is a lot to deal with.

 

[noblehead]

Meant to say @baldrick040561, for information and advice on diabetic retinopathy have a read around the following website:

http://www.diabeticretinopathy.org.uk/Information_for_patients.html

 

[CarbsRok]

Hi. I am 54 and have been a type 1 diabetic since my early twenties. My sugar levels have fluctuated for the past few years and I am now on an insulin pump. I have problems with my eyes - retinopathy etc and I am having Lucentis injections to both eyes on a regular basis. I also neuropathy in both feet and lower limbs which has led to Charcot foot in my right foot for the past 12 months. I have also had problems with arrhythmia so had an ablation earlier this year which seems to have helped. I also have ED and have now been told that I may have gastropareis or gluten intolerance for which I am now awaiting tests.

My sugar levels are all over the place for no apparent reasons with lows (2.7) and highs (19.7). I have no hypo awareness so I test regularly. Has anybody else had same problems and do you think it could be Brittle diabetes, Double diabetes or something else?

My blood sugars would go from 0 - 60 (slight exaggeration) whilst trying synthetic insulin, So I went back to Animal insulin and use that in my pump. For quite awhile 15 months or so a go I had unexplained hypo's as well and it worked out to be gluten intolerance. Now gluten free and fine.

 

[donnellysdogs]

My stomach works superbly well now with 2 teaspoon of flaxseed daily and more fat. Ref gastrparesis, have you had the shapes test done? Stomach works lovely now, but I had slow colonic transit.

Animal insulin may be better for you. Have you a CGM?

 

[Robinredbreast]

Hi. I am 54 and have been a type 1 diabetic since my early twenties. My sugar levels have fluctuated for the past few years and I am now on an insulin pump. I have problems with my eyes - retinopathy etc and I am having Lucentis injections to both eyes on a regular basis. I also neuropathy in both feet and lower limbs which has led to Charcot foot in my right foot for the past 12 months. I have also had problems with arrhythmia so had an ablation earlier this year which seems to have helped. I also have ED and have now been told that I may have gastropareis or gluten intolerance for which I am now awaiting tests.

My sugar levels are all over the place for no apparent reasons with lows (2.7) and highs (19.7). I have no hypo awareness so I test regularly. Has anybody else had same problems and do you think it could be Brittle diabetes, Double diabetes or something else?

Hi, it's best to ask your DSN or diabetes consultant. But, saying that, befiore I was dianosed with Coeliac disease my sugar levels were all over the place, and I had no idea what is was. I did though have other symptoms and I was convinced I had an ulcer, but no. I remember one Sarurday after going home for lunch from work, I had normal lunch, took Insulin, walked back to shop, 7 mins, by the time I took my own coat off and put shop coat on, I was feeling bad, so tested and I had dropped to about 2.2. I just couldn't understand it and thought I had taken too much Insulin, but I now know I hadn't. The food ( nutrients) weren't being absorbed, so at times It was like having Insulin on an empty stomach
I don't know if this is any help to you, but I do hope you can find out what is causing your problems.

Take care and good luck RRB