Does anyone know anything about Brittle Diabetes?

[Mrs of type 1]

Hi there,

I was wondering if anyone knows anything at all about Brittle Diabetes? My husband has been a type1 for 30+ years. He has some complications and has never had very good control over his sugar levels. The past 5 months he seems to have lost all control with his blood sugar going very high for no reason at all and then very low when he has eaten more than enough, I maybe clutching at straws but I Googled Brittle Diabetes and he does seem to have a lot of the symptoms. Be interested to hear what experience you have Brittle Diabetes. Thanks for reading.

 

[noblehead]

No more than what you read on Google. I did meet a lady a few years back who had Brittle Diabetes and she had sudden and unexplained episodes of hypoglycaemia which often resulted in an ambulance being called, from what I gathered her bg would fluctuate from high to low and no two days were the same.

 

[Hooked]

My levels fluctuate wildly too. Unexplainable highs and lows. Drs, dieticians and nurses at a loss as to what to do with me. I test 4-6 times a day and keep note of exercise and exactly what I eat and when. Bloods tend to range from 22 to 2.1 within a day, though not always hypos. I've been told a pump would help, I'm on the waiting list. Wish I could get on it sooner rather than later as the complications are getting me down.

Only once have I heard the term brittle diabetes mentioned by a dietician assessing me. I've never officially been told that's what I have or what difference a diagnoses of it would make to my treatment.

I'd be interested to hear other's experiances on this.

 

[robert72]

It could be nerve damage causing delayed/unpredictable emptying of the stomach. (gastroparesis)

 

[Mrs of type 1]

Thanks for your replies,

My husband is just the same as you Hooked, he also can go from 1.3 to over 20 in a matter of hours for no reason at all. Back in June his sugar was so high for a week that he barely ate anything and took more insulin before it came to normal levels, the Diabetic nurse put it down to the injection site becoming fatty and the insulin not absorbing properly, but we are still having problems even though he changed the site.

It's interesting what you said Robert about nerve damage as he does have nerve damage and quite bad Neuropathy he takes high doses of pain relief. This is something we need to look in to, thanks.

 

[Hooked]

Thanks for your replies,

My husband is just the same as you Hooked, he also can go from 1.3 to over 20 in a matter of hours for no reason at all. Back in June his sugar was so high for a week that he barely ate anything and took more insulin before it came to normal levels, the Diabetic nurse put it down to the injection site becoming fatty and the insulin not absorbing properly, but we are still having problems even though he changed the site.

It's interesting what you said Robert about nerve damage as he does have nerve damage and quite bad Neuropathy he takes high doses of pain relief. This is something we need to look in to, thanks.

Yeah, they looked at my injection sites too. I've been avoiding my arms for over a year now as there is lumps there; but despite ensuring the sites are rotated and now using my stomach in the last few months (I hadn't previously), problems still continue.

They put me on a Continuous Blood Glucose monitor for a week to see what my levels were up to; Perhaps your husband could ask about doing that to see what is going on between his own tests to see if it sheds any light on things.

 

[Mrs of type 1]

Thanks Hooked for replying,

Hubby had always injected in his legs and for the past couple of months is now using his stomach with a different type of syringe. I think this has worked to a certain degree as the sugar will come down with insulin whereas before it wasn't coming down for days and he even stopped eating at one point. But it still doesn't explain why he has such highs and lows for no reason, I didn't know there was such a thing as a Continuous Blood Glucose monitor, that's a thought, he has an appointment with a new consultant in January so hopefully we can ask about that then and Brittle Diabetes and Gastroporesis, hope it's a long appointment lol

 

[Hooked]

Thanks Hooked for replying,

Hubby had always injected in his legs and for the past couple of months is now using his stomach with a different type of syringe. I think this has worked to a certain degree as the sugar will come down with insulin whereas before it wasn't coming down for days and he even stopped eating at one point. But it still doesn't explain why he has such highs and lows for no reason, I didn't know there was such a thing as a Continuous Blood Glucose monitor, that's a thought, he has an appointment with a new consultant in January so hopefully we can ask about that then and Brittle Diabetes and Gastroporesis, hope it's a long appointment lol

If he is able to see the diabetes nurse before then they might be able to fit him with a CGM before his appointment in Jan. The results might help the Dr make a better plan of action for your husband. :wink:

 

[mentat]

There are some good ideas here. Gastroparesis (delayed stomach emptying) can make diabetes very unpredictable! Or maybe the problems are related to some other diabetes complication. Even if you do get this issue under control I urge you to take action to improve diabetes control; look into basal/bolus regimes etc. to help prevent further complications.

Diabetes can also be significantly affected by hormones. Maybe your husband is going through "male menopause" or something in his life is causing varying levels of stress. Sometimes the high and low blood sugars cause stress which leads to more fluctuations. Try keeping a diary of what goes on (including food, drink, exercise, stressful events, anything irregular) during the day and seeing if you can find any pattern.

 

[Mrs of type 1]

Thank you, very good ideas, my husband does work long hours in a very stressful job and feeling ill all the time is also a factor, and he was 50 last week, so definitely a male menopause lol!!

His sugar level's have been a little more normal today, we will see how we go over the next few days and if he's not too good we will ring the Diabetic nurse. He hates to make a fuss.

 

[PAST THE POST]

Been type 1 for over forty years and only once has Brittle diabetes ever been mentioned. One of my previous consultants (one of the old school) told me that was what i had. When I mention this to current nursing staff or doctors they look at me with puzzled faces and carry on as if I had'nt said anything! My control is generally ok, not perfect, but I am aware of when BS suddenly dips after only slight exercise.