Brittle diabetes

Hi Howard

Sorry to hear about your wife's difficulties. That's a long hospital stay. Were her team able to get her sugars better controlled in hospital? Did they suggest any reason for her control difficulties? Does she use a CGM?

Brittle diabetes is very hard to treat as there is often no reason for hypos/ hypers.
Usually you just have to test more often and treat as necessary.

(Edited by a moderator due to unverified medical info)

Howard1974 said:

She has a CGM and a
New pump which stops
Giving insulin when bm drops ...
They can't work out why she is so sensitive but it's been a long 4 months so far

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I hope the pump and CGM combination help, Howard. I can well believe it's been a long 4 months. Diabetes is difficult enough without added control problems like this.

I presume your wife has had tests for things like Gastroparesis which can affect how quickly food is 'absorbed'?

Hi @Howard1974 , I'm a type 3C which is a form if brittle diabetes. It's so hard to explain how horrendous those sudden highs and lows are, and in my case bear no correlation to what I eat, the insulin, stress, exercise etc, they just happen randomly. And Im also ruled out of islet cell transplant/pancreas transplant. Am I right in assuming that your wife has been fairly well controlled until now? Please remember I'm not a doctor but just a few thoughts. Have the docs looked at the possibility that she has developed type 3C (basically 3C is where there is extensive damage to the pancreas and both the beta cells and the alpha cells (liver) are destroyed - its only the beta cells in type 1) It is a very rare form of diabetes so its abit of a shot in the dark but worth exploring if only to rule it out.
My insulin regime is adjusted fairly frequently but at the moment I'm the most stable I've been (but I have only been on insulin for this year). I am on long acting humulin in the morning (none at night because I hypo). Then a fixed dose short acting humalog for meals. (I can't carb count because I have severe malabsorption so even though I can say how many carbs I eat, there is no way of knowing how much carbohydrate my body has absorbed) I then can use a correction dose if I need to a couple of hours later dependant on my blood sugar readings.
I did find it took the doctors a while to get their heads around my brittle diabetes because it is so rare. My current consultant had never treated a type 3C before in thirty odd years!!!! That's not meant to scare you, just to make you aware!! Since they have however, they have been fantastic and are now open to trying (what I call) my logic suggestions (eg they didn't get the fact that my malabsorption would directly effect how my insulin worked!).
Sorry I can't give up any concrete advice. Brittle diabetes is a very different ball game to type 1 and after all those years of having type 1 your wife and you must be reeling. All I can say is I wish you well, I send you e-hugs and am with you all the way. Sue xxxxxx

Howard1974 said:

Thanks Sue ... My wife has awful hypos at night , the docs are waiting for results from a series of blood tests which take longer to analize. My wife has been told she may never return to work or drive etc so am now also trying to navigate through all the paperwork required for state benefit - its hard to know what you are allowed to claim and trying to explain to government depts that the problem is more than type 1 diabetes .... Thanks for your ehugs will pass them on to my wife when i visit tmrw

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My severe hypos are at night too. As part of my regime I have to eat about 11pm (slow release carbs - I use nut cereal bars!), and I have to eat at approx 3 in the morning (digestive biscuits if bloods above 4, gluco tabs and digestives if under 4), that's of course if a hypo hasn't got me first!! Despite that my morning bloods are rarely above 4 - but then could jump to 18, and down to 3 in the space if half an hour!! I have found that eating every 4 hours and giving up on big meals has really helped. So breakfast, small lunch, snack, small dinner, snack, bed, snack, breakfast (but I don't inject for the snacks). It really is trial and error. Sue xxx
Edited to add - I am 'early retired' and I know I couldn't work again because I do get very exhausted at times. BUT I am very active so please give her hope. The docs wrote me off at first, but that just made me more determined to prove them wrong!!