NIH Lists Brittle Type 1 as a Rare, Distinct Diabetes

In the 60s I was always referred to as a "brittle" diabetic, but then the term went out of favor, maybe it is coming back.

NIH Lists Brittle Type 1 as a Rare, Distinct Diabetes
Diabetes Health Staff
Oct 19, 2013

The National Institutes of Health recently listed brittle type 1 diabetes as a rare disease, a distinct and separate form of type 1. An estimated 3,700 to 8,700 persons in the United States have the condition.

Brittle diabetes is characterized rapid, unpredictable, and uncontrollable rises and falls in blood sugar levels. According to the Brittle Diabetes Foundation (http://www.bdtype1.com/), there are 18 known causes for the condition, which when diagnosed and treated allow brittle diabetics to achieve a stable type 1 pattern.

Because of the rarity of the disease, patients who have the disease often go undiagnosed, with doctors and healthcare providers assuming that problems with blood sugar fluctuations are a matter of non-adherence to established diabetes management routines.

The condition is often detected in hospitals when brittle diabetes patients fail to respond to conventional methods for stabilizing blood sugar levels, which opens the door to a diagnosis of brittle diabetes.

The Brittle Diabetes Foundation was formed in 2012 to address what is says has been 80 years of neglect by the medical community despite ample research into and documentation of brittle diabetes.

In the wake of the NIH's recognition of the condition, the agency has set up a website dealing with brittle diabetes at http://rarediseases.info.nih.gov/gard/11900/brittle-diabetes/Resources/1.

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Wow, that's interesting news. I have always been very skeptical of the term and figure that it's an error on the part of doctors. I know Holger has reported from Germany that the term is used there and has some medical implications, although I can't recall what they are. Perhaps they should call it something else, like type 3 or type X or something?

I've been called brittle a few times, but have never been hospitalized due to control problems. I found both sides frustrating. On one hand, endos just saying "brittle" and saying this was the best we could do was frustrating because I felt like there MUST be some cause that I never got any help in determining. On the other hand, people saying there was no such thing as brittle was frustrating because it makes it sound like there is no such thing as someone who just has random, unpredictable swings for NO reason, when I was one of those people. No one, including me or endos or CDEs has ever been able to spot any pattern to my numbers. This page on the Brittle Diabetes Foundation website really rang a bell for me with my personal experience.

So in a way, I think it's good that it's recognized as distinct. Maybe that will stop doctors from just using it as an excuse but at the same time, acknowledge people who really do have problems. And, if there are 18 causes, presumably someone who receives the diagnosis will get help in figuring out the cause and resolving it. I'm not sure I'd consider it an entirely separate disease, just Type 1 with something that really interferes with control.

I'm the same, every time I see a new CDE or Endo they look at my figures & say "but there are no patterns"! Duh, I know but how do I sort it out.

I have this without question. If my blood sugar drops to 3.2 or so, I have a few sips of apple juice and then watch as my blood sugar skyrockets to about 14. It’s so brutal it’s crazy.

  1. Both of the links given in the original posting are non-functional at the moment. I have no idea what that means.

  2. Given the “18 known causes” - probably 23 by now - and the ‘characterization’, I would call it a syndrome at best, not a disease. It is probably a subset of the deadly ‘trying to classify complex things which you don’t know enough about syndrome’, which is very common. Ask any intelligent person dealing with bacterial taxonomy, for example.

  3. @Sheryl , classification is one question and living with a phenomenon is quite another. I hope you find at least a partial solution for your problem. I have found the old ADA solution at least most convenient for me (though I still hate them with a passion, and I think that my endo does, too): 15 grams of some quick source of glucose, then wait 15 minutes and measure again. (If I’m still alive. If I’m not, there’s no point in measuring.) Maybe apple juice is too quick for this system, for you.

Good luck.
M.

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Thank you @MapleSugar. Appreciate your response. I find that 15 grams of a juice will send my blood sugar straight upwards. I try to find candies with only 5-6 gms of sugar in each one. So I eat one candy and give it a few minutes. Then I check blood sugar again. I am very lucky to have Dexcom 6 and Omnipod Dash as I’ve found it helps things quite a bit. My basal insulin is very minimal too and I have been checked to see if I’m producing any insulin in my body; result was 0. :woman_facepalming:

If you get a glucose tolerance test, it will flush out if you have brittle diabetes.
It’s normally used to diagnose type2, but can also diagnose brittle diabetes or difficult to control diabetes, I’ve also seen it referred to in journals.

You can do the test at home esp if you have a cgm but using a finger stick tester also works.

You start with stable glucose where you have been fasting for 8 hours. Then eat 20 grams of fast carb like soda apple juice etc.

Then you record the next half hour. Take a finger stick every 10 min or let your cgm do its thing.
Of course if you ar3 on a pump, turn off the algorithm before you start.

Then correct the glucose level as you normally do. Note how long it takes do come back to normal.

Repeat this with 40 g of fast carb.

If you get a predictable response and recovery, you are not brittle.

If the 20 g test is very different from the 40, or if you crash from one and not the other, you might be brittle.