Brittle Type 1 Diabetes

CToomey2017
By CToomey2017 Latest Reply 2018-02-06 09:46:01 -0600
Started 2018-01-28 02:14:03 -0600

Hi,
My husband is diagnosed as a brittle diabetic since he was 12 and is now 35. Hes having a hard time managing his diabetes. He is normally in the 300-400 range but it often gets to the point where his meter wont even read it because its too high (over 600) he is also often low too. A typical low for him is 30s-40s but he has been as low as 15. he described the experience to me as he was conscious but unable to move. which is understandable because there wasnt enough sugar in his blood to convert to energy. He is an average weight guy about 160ish but never has an appetite so he hardly eats and when he does its little hes also VERY STUBBORN. i have tried to explain to him that for his health and our future together (we just got married in July) he needs to start eating and taking care of himself. when his sugar is high he tends to inject like 25-40 units at once, which to me seems ridiculous. especially since his sugars fluctuate so much and so quickly.

does anybody know of a way i could get it through to him that he needs to start treating his body better?

also i have tried to look up things on brittle diabetes but i cant find much, is there any website or article specifically for brittle diabetes??


7 replies

Over4decades
Over4decades 2018-02-04 14:19:52 -0600 Report

It may be he has given up and sees no point to even trying. I've been a brittle diabetic for 45 years. I was 15 when diagnosed. My blood sugars are all over the place—I left a bit ago to get tea with much sugar in it and a Hostess cake. Yesterday, it was low all day. A week ago, it was super high—500 one morning. I try to adjust, but most of the time, to be honest, it's just a guess. I often say I should just get a dart board and throw a dart for dosage (I don't, but I really don't know that would be any worse than my calculated dosage guesses.) It is extremely frustrating. I'm often upset because the insulin is not predictable. I use two different insulins and adjust my own insulin. After a while, watching failure after failure, people can just give up.

There's not much on brittle diabetes. Many doctors just call it poor control, which only adds to the "Why bother" feeling. It might be because the condition is very hard to treat and success is very individual. One unfortunately really is on their own in this. Reading about others may help.

When I was in the hospital, they used what was called a sliding scale (when I actually let them choose the dosages—generally I don't). I found it horrifying in that it is always playing catchup. The dosage is based on current blood sugar and does not include taking into account what you eat. Since I use what is called "insulin to carb ratio", the catchup aspect annoyed me. However, with someone who eats randomly and has extreme highs and low, this might work. You can look up the information on sliding scale and ask the endo perhaps.

Type1Lou
Type1Lou 2018-02-05 13:54:41 -0600 Report

I've been Type 1 for 41 years but was 27 when dx'd in 1976…probably an easier age to deal with that diagnosis than 15. When I hit my late 50's, I began having more serious and frequent low BG episodes. I was using my PCP for my diabetes after moving to Florida in 2005 and I'd fallen into some bad habits about dosage. I went back to an endocrinologist in 2010, after realizing that my PCP really wasn't up to handling my Type 1 diabetes. This PCP had kept on increasing my Lantus dose and told me to skip bolusing for meals because of the lows I was having. (?)…His advice nearly killed me. In 2010, I went back to seeing an endocrinologist and the endo actually reduced my Lantus dose by 25% and re-educated me about carb to insulin ratios and correction doses. That was working OK but, after resisting it for years, I finally decided to give pumping insulin a try and am kicking myself for having waited so long to do so. My endo describes me as "somewhat brittle". Pumping has given me better overall control with less insulin and greater flexibility. (My last A1c was 6.3.) I haven't experienced any seriously low BG's requiring glucagon since going on my pump in 2011. I also follow a low-carb diet and regularly exercise. I'm enjoying my retirement, despite my diabetes…although, at times, BG results are truly baffling.

Type1Lou
Type1Lou 2018-01-29 15:17:22 -0600 Report

Sadly, if the person with diabetes won't help himself (or herself), there is little that others can do. I get it that you care and you love him. I get it that you want him to be around for a long time…but, with BG's as out of control as you describe, he's on his way to an early death preceded by dire complications that will affect his quality of life. He is certainly not overweight. I assume he is on multiple daily injections of a fast acting insulin for meals and a long-acting insulin for his 24-hour "basal" needs. Is he seeing an endocrinologist for his diabetes? Does he watch what he eats and drinks? Some regimentation is required to manage diabetes. Has he considered using an insulin pump? I started pumping in 2011 but was diagnosed in 1976 at age 27. Pumping has given me better control with greater flexibility. My endo calls me "somewhat brittle". Brittle diabetes is characterized by wide swings in BG readings but is a term no longer much used. How often does he test his BG's? (I test 8 times per day and do not use a CGM-a continuous glucose monitor.) Maybe by learning as much as you can about diabetes you can help him find his way but he will have to be open to accepting that help. A book that has become my go-to manual about treating my diabetes with insulin is Gary Scheiner's "Think Like a Pancreas". I highly recommend it. Carbohydrates are what generally cause blood sugars to rise but alcohol can throw a monkeywrench into a diabetic's control since alcohol initially will cause a drop in BG…don't know if that might be a factor. Hoping both he and you find a way to better diabetes control for him.

CToomey2017
CToomey2017 2018-01-30 00:38:58 -0600 Report

He’s supposed to be getting a CGM in February. He just had a low. It was 43 then 62 within two minutes but shot down to 51 in less than 1 minute and back up to 74, 2 minutes later. I had to give him glucagon because he was looking grey and like death. He’s up and awake now. But this is an every day thing. He eats but not nearly as much as he should be. I try my best to make him eat at least breakfast and dinner with a snack in between because I know with his stomach and appetite being so small he can’t eat much more. He sees his endocrinologist every 3 months sometimes more if he needs it. And thank you for the recommendation for the book. I’ve been trying to find reliable sources for learning about type 1 and brittle but I can’t seem to find a lot

Type1Lou
Type1Lou 2018-02-02 13:24:36 -0600 Report

Is he on an insulin pump or doing multiple daily injections (MDI). When I was on MDI, I had frequent low BG's requiring glucagon. In 2011, after resisting it for many years, I decided to give pumping insulin a try. I'm sorry I waited so long. Pumping has given me better control with less overall insulin and greater flexibility. I am able to skip meals when and if I want. A pump also allows me to set temporary basal rates to lower or increase my basal rates as needed or even to temporarily suspend any basal insulin delivery…something you can't do with a long-acting injected insulin…once it's injected, it's there for the duration. I haven't had a seriously low BG requiring glucagon since starting on my pump. (I don't use a CGM but do test my BG 8 times daily.) If he is already pumping insulin, it sounds like his basal rates require adjusting and a CGM can give him/his doctor the data needed to make those adjustments.

CToomey2017
CToomey2017 2018-02-04 16:47:51 -0600 Report

He injects insulin himself. He’s about to get a CGM but we haven’t heard anything about a pump. We’re looking into it though

Type1Lou
Type1Lou 2018-02-06 09:46:01 -0600 Report

The CGM will help him and his doctor get the data needed for achieving better BG control. If at all possible, please consider using an insulin pump. Medtronic's new 670G insulin pump which works in conjunction with its Guardian CGM has an "auto mode" option that, based on the CGM BG readings every 5 minutes will automatically adjust the basal insulin deilvery up or down to keep the user at 120 mg/dl. It sounds like it's tailor-made for your husband. Here's a link o the Medtronic page describing this pump: https://www.medtronicdiabetes.com/products/mi...

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