What is brittle diabetes?
The simple answer is that it is a rare form of type 1 diabetes in which it is extremely hard to manage blood sugars.
I mean beyond the usual fluctuations that occur in diabetes.
Some people just can’t seem to get a grip on those blood sugar numbers.
They are high (hyperglycemic), then low (hypoglycemic) regardless of all attempts at effective management.
Brittle diabetes, a rare condition that affects mainly those with type 1 diabetes, particularly women in their 20’s and 30’s.
Brittle diabetes can also be referred to as labile diabetes.
The words brittle and labile can both mean “unstable” or “easily changed”.
It is quite rare affecting only 1 in a thousand insulin-dependent diabetics.
We have found that while our grandson’s blood sugar levels do fluctuate, they don’t do so wildly.
We are able to keep a tight grip on his numbers though and treat any highs or lows before they become serious or risk complications.
What is Brittle Diabetes
This instability of blood sugar levels often leads to hospitalization.
Frequent self-monitoring of blood glucose is essential.
Using a continuous glucose monitor (CGM) and an insulin pump can make brittle diabetes easier to manage especially with a closed-loop system.
Although rare, sometimes a pancreas transplant may be necessary.
Causes and symptoms
Any diabetes can be unstable when you don’t manage it well.
However, if your blood sugar levels are swinging wildly there could be many reasons for it, such as:
- You are not taking medication or testing blood sugars as you should be
- a high amount of stress
- hormonal imbalance
- an eating disorder
- your intestines are not effectively absorbing nutrients
- celiac disease
- you are extremely sensitive to insulin
- drug or alcohol use
Quite often, doctors don’t know exactly what causes brittle diabetes but it can be one or more of these.
Symptoms of Hypoglycemia
There are three levels of hypoglycemia.
- Level 1 (mild)
- blood glucose is less than 70 mg/dL but more than 54 mg/dL
- may experience sweating, shaking, nausea, extreme hunger, nervousness, dizziness
- Level 2 (moderate)
- blood glucose is less than 54 mg/dL
- may experience some of the above as well as difficulty concentrating or speaking, confusion, weakness, vision changes, mood swings
- Level 3 (severe)
- the person is unable to function because of mental or physical changes
- this is where the person is unable to take fast-acting sugar themselves and requires assistance, they may be unconscious or have seizures. They need to be treated with a Glucagon Emergency Kit.
It is important to realize that some people may experience some or all of these symptoms and some only a few.
We have discovered that Alex, is actually Hypoglycemic Unaware, not really a good thing.
We believe this could be because of his young age and he is unaccustomed to really have to notice how his body feels.
Our daughter is really trying to teach him to describe how he feels when his blood sugars are low or high.
As his caregivers, we notice he is sometimes sensitive or cranky when his blood sugars are low.
When his blood sugars are high the only way we know is by testing him.
Because Alex doesn’t seem to know whether he feels high or low, it is important for us to test his blood sugar levels frequently.
Thankfully he wears a continuous glucose monitor(CGM) which really cuts down on the number of finger pokes.
I would certainly recommend having a discussion with your doctor to determine if a CGM would be a beneficial part of your diabetes management plan.
For us, a CGM has been a game-changer.
A Diabetic person may have some of these early symptoms of Hyperglycemia (high blood sugars):
- excessive thirst
- frequent urination
- trouble concentrating
- blurred vision
- weak, tired feeling
- unplanned weight loss
- tests high with a blood glucose monitor
If left untreated the person may also experience:
- vaginal and skin infections
- worse vision
- cuts and sores may be slow to heal
- nerve damage causing painful or cold feet, hair loss on the lower extremities, or erectile dysfunction
- chronic constipation or diarrhea
- damage to eyes or kidneys
Alex’s CGM is truly helpful in knowing when Alex’s blood sugars are too high.
By simply scanning him we know which direction his numbers are trending and can treat him before anything serious develops.
It is because any diabetes can be unstable at times due to improper management that makes diagnoses of brittle diabetes difficult.
People with brittle diabetes are frequently hospitalized with severe hypoglycemia or hyperglycemia and often diabetic ketoacidosis (DKA).
Brittle diabetes is often accompanied by psychological problems such as stress and depression. This can lead to neglecting self-care causing wild blood sugar swings.
For example, people with brittle diabetes may stop eating their healthy diet or managing their blood sugars altogether.
As blood sugar control ceases, the resulting metabolic imbalances may further complicate or worsen any underlying psychological problems.
This causes a repetitive vicious cycle.
Because the main problem with brittle diabetes is the unpredictable fluctuations in blood sugar levels, switching to a reduced carbohydrate diet may help reduce those rapid blood sugar swings.
Consuming fewer carbohydrates may lessen the frequency of sharp rises and drops and/or make them less severe.
Increasing the frequency of monitoring blood sugar levels and making any necessary corrections before they become severe will also help in better blood sugar management.
It would also be a great idea to take advantage of today’s technology and use a continuous glucose monitor (CGM) or an insulin pump.
A closed-loop system such as T-Slim Control IQ system that pairs with a Dexcom G6 device would be ideal.
While technology may not be right for everybody it may be worth discussing with your diabetes care team to see if it could help you gain better control over your blood glucose levels.
Our young grandson does wear an insulin pump.
Although I believe they will soon be discussing it with his diabetes care team because he is starting to ask about wearing one.
He understands that a pump will mean he won’t need four needles a day because the pump will deliver his insulin.
Be sure to discuss with your doctor whether a pump is right for you.
Until recently, I had never heard of, let alone understand what is brittle diabetes.
We have learned that brittle diabetes is simply uncontrolled blood sugar levels that fluctuate wildly and often require hospitalization.
Brittle diabetes is extremely rare.
If diagnosed it is important to follow a healthy, low-carb diet and take all medications as directed by your diabetes care team.
Increasing the frequency of testing blood sugar levels is important.
Technology such as continuous glucose monitors (CGM’s) and/or insulin pumps can really help keep a tight rein on those blood sugars.
Have you experienced brittle diabetes?
Have you used a CGM or insulin pump?
What worked well for you?
Leave your suggestions in the comment section below.
I am not in any way a medical practitioner, please do not rely on the information on our website as an alternative to medical advice from your doctor or another healthcare provider. We only share our experiences. We are affiliates, this means that if you purchase something from a link or ad on this site we may receive a small commission. This in no way affects the price you pay.