Brittle diabetics

By Starry20 Latest Reply 2018-01-28 02:19:59 -0600
Started 2011-06-03 10:41:15 -0500

I started this discussion for a new dc friend… Brittle diabetes is a very rare and hard to deal with kind of diabetes… My blood sugar can go from 80 to 300 in 30 minutes… I still have yet to regulate my blood sugar after 8 years… Every time I visit the doctor he changes my insulin dosage in a vain attempt to regulate it… I am curious how many of you are brittles, you don't have to but please tell me if you are

17 replies

CToomey2017 2018-01-28 02:19:59 -0600 Report

My husband is a brittle diabetic. his sugars have been as low as 15 and as high as unreadable (over 600) he is typically in the 300-400 range though. he was hospitalized in april of 2017 with DKA and has lows quite often. he actually just had a low earlier tonight. he was diagnosed with diabetes at age 12 and it became brittle due to lack of proper care when he was about 15 or 16 and he is now 35. he also has epilepsy so whenever he as a seizure i have to check his sugar afterwards because it could be from his diabetes or his epilepsy

Nica0226 2011-06-06 15:03:55 -0500 Report

I was brittle from the start, my emotions, emotional eating, my excerise routine, pregancy at 14 (5 years after being diagnosed), and dozens of other medical issues make my brittle diabetes hard to handle. The pump helped for the first 5 years of using a pump. Now, my brittleness is back full blast, though I wonder why the pumps stopped working for me, I have tried medtronics pump, accu pump, and now the omni pod. none have helped me again. No doctor, none even at the Joslin Clinic have ever said why I have brittle diabetes or what causes it. I was 156 about half an hour ago, took the insulin, as prescribed, and now am at 29. I am drinking Apple Juice, but will spike soon enough.

Starry20 2011-06-07 00:14:55 -0500 Report

Maybe you need a ratio change, mine must be changed often or my body gets used to it and it doesn't work as well…? Don't ask me why it just doesn't…

marla50 2011-06-06 01:59:05 -0500 Report

Hello. I am brittle. Mine is caused from having it for 45 years. Mine can go from 120 to 30 in nothing flat. I am on the pump and it seems to help a little. I can no longer feel my lows. I've heard some refer juvenile as brittle but I don't think that's true. If u ever want to chat,I'm available.

sunshine247 2011-06-04 06:18:14 -0500 Report

As difficult as it is to find any information on Type 1 Diabetes, it is even more difficult to find any on Brittle Type 1 Diabetes. It is so frustrating to know that there are so many people out there with Diabetes and so little with what "you" have. The doctors don't know what to do with you and other diabetics don't know what to say to you. Your family and friends don't understand your limitations because all they read about is Type 2. It just simply is not the same. I have become so frustrated and depressed by this that I don't know what to do. I also have several other illnesses that just add to the equation. Sorry, Just venting because I can't sleep…again.

jayabee52 2011-06-06 03:51:01 -0500 Report

If iI remember correctly my "Jem" was termed "brittle", and she was t2.

Because she had so many "medical challenges" (CHF, Lupis/SLE, RA, Fibro, Kidney disease, GERD, and more) there was no telling what her BG#s would be. She would be up and then would drop and have lows. CHF = rapid heartbeat, burning up the glucose rapidly, and pain from the RA or SLE would shoot her BG#s into the stratosphere. I never knew where she'd be with her BG#s.

One morning she didn't wake up. Don't know what actually caused her to pass from this life, but she had been through the wringer, medically.

Starry20 2011-06-06 14:34:32 -0500 Report

I'm so sorry, it sounds like, even though it was heart wrenching passing would be what's best… My mom had a baby boy and minutes after he was born he passed… It was a sad experience, I just couldnt imagine knowing them for twelve years… My prayers will go out to you.

jayabee52 2011-06-06 14:39:43 -0500 Report

Thank you Raven. I'm just glad I got to know her. She, even with all her challenges was a fantastic lady.

Starry20 2011-06-07 00:11:55 -0500 Report

Well, keep your precious Jem in your mind always!! Even the bad times can be looked upon with happiness and joy but the good times are the best!!

edvel54 2011-06-03 10:52:23 -0500 Report

sorry never heard of it. What cause brittle diabetes

sunshine247 2011-06-04 06:20:19 -0500 Report

Edvel, They do not know what causes you to have Brittle Type 1 Diabetes…I have an identical twin sister who does not have diabetes and we have not been able to find anyone in my family who has diabetes. Yet I was diagnosed at age 31. I have had it for 8 years and have not been able to control it no matter what I do or don't do.

blueeyes33 2011-06-04 06:56:12 -0500 Report

I have been told that i have that also.My sugars can go from 120 to 300 in no time.Stress ,emotions and just having other conditions prob. have something to do with it. I am with you girl!!! If you need to chat I am right here. :)

Starry20 2011-06-03 13:07:35 -0500 Report

Idk, sorry the doctor never told me

Mermarmad 2011-06-18 09:00:36 -0500 Report

My daughter was diagnosed at the age of 5. She is a brittle Type 1 and has been from the start. It is hard enough trying to regulate a child, but with brittle…it's UNREAL! She is now 9 and people "assume" she should be regulated. Especially in the school system! This year was my first year going back to work and the school supplied a "Diabetic Educator." Although this is a GREAT person to have, most are trained on the just the basics. I spent every day back and forth through texts and phone with the "trained" educator FREAKING OUT because Madeline was NEVER "just normal." She constantly made comments that she didn't have "these" issues with the other diabetic child in her school. Trying to get the school system to understand that a lot of times you have to be more RE-active with brittle diabetics because PRO-active, although important, doesn't stop the high and low rollarcoaster is a difficult battle to fight. PROTOCOL is a word I come to despise.

@blueeyes33… You are correct, I have found, that emotions… Stress, fear, excitement, etc. play a VERY big role in Madeline's BG levels rising and falling in a moments notice.

Although it is so difficult to deal with, it is comforting to discuss or "tell" your issues with people who live it and TRULY understand. :) Thank you!