Ketones and type 1 diabetes

[ElaineB]

My son was diagnosed with type 1 diabetes (age 33) on Monday, which has come as a big shock to us all. He is in hospital and won't be allowed home until his ketones are 0.3mmol/L or less because the doctors say anything above that level is dangerous. When he was admitted he was 3.3 and now is stuck at 1.7 and it is not coming down. Glucose levels are still high but coming down with an insulin drip.

What I want to know is why are ketones dangerous for diabetics yet good for us (I know that bit)? I really don't understand.

Thanking you in advance

Elaine

[shenmen100]

Elaine,

I am sorry to hear about your son.

My spouse is a T1DM ,was diagnosed as an adult, and it has been a long road of self education beyond standard western medical care recommendations for diabetics, which is in a slow evolution like the current Alzheimers care recommendations. It is not uncommon for a first time T1DM manifestation to occur with higher ketones as the baseline insulin levels are very low or non existent, which is the dangerous part of this equation (one of the differences between "us" and him). Once your son gets used to his diagnosis and learns to manage his short and long term insulin, he can start exploring his options.

I can recommend books by Keith Runyan MD and Ellen Davis, The Ketogenic Diet for Type 1 Diabetics, BUT for someone with a new T1DM diagnosis a book called Bright Spots and Landmines by Adam Brown is extremely helpful. Finally Dr Jake Kushner MD speaks at the low carb conferences and has a very good podcast with Peter Attia that is full of information about T1DM and ketogenic diets. links below.

I just want you to know there is a lot of support and help out there for you and your son, it can be a challenging diagnosis, The Dexcom glucose monitor has been a lifesaver-literally-for my spouse who is 10 years post T1DM diagnosis and manages his glucose levels very well with Intermittent fasting, basal insulin, and a low carb diet.

I hope this helps,
all the best

I https://peterattiamd.com/jakekushner/

[ElaineB]

Shenmen100, thank you, your reply is so helpful. The book Bright Spots is just what he needs at present I think. But I will certainly file away your other comments and references for when he is further down the line. It has just been such a shock for us all!

Elaine

[Tincup]

Other resources. The FaceBook group Type1Grit. These people follow Dr. Richard Bernstein's approach You can read some chapters of Bernstein's book online for free. Bernstein also has his "Diabetes University" on Youtube
Bernstein is a T1 who figured out how to minimize insulin requirement while achieving normal blood sugars. He's now around 85. Diagnosed at age 12, he figured this out as a 30 something engineer. When the medical establishment would not publish his paper, he went to medical school at age 45 and continues to maintain a full private practice today.

There is a difference between diabetic ketoacidosis (DKA) and nutritional ketosis we talk about here. Ketoacidosis presents with high glucose and high ketones (>15 mmol/L) with very low insulin. In nutritional ketosis, glucose is low, insulin is being produced and ketones are in the 0.5-8.0 mmol/L. When I water fast for a week, I can have ketones in the 7's or near 8.0 mmol/L. However my glucose is in the 50's or lower. If you convert glucose in mg/dL to mmol/L (divide by 18) and then add the ketones, you can get an idea of "fuel on board." In my case if my glucose was 54 mg/dL, it converts to 3 mmol/L. If my ketones were at 7.0 mmol/L, my "fuel on board" would be 10 mmol/L. For a T1 without insulin, their glucose might be 400 mg/dL and ketones at 15 mmol/L. 400 mg/dL is 22.2 mmol/L, add the 15 mmol/L ketones and you get fuel on board of 37.2 mmol/L. A huge difference! DKA is a very serious situation. I know T1's who can actually water fast - they use a CGM and pump. They key, they say, is the ability to titrate the insulin very low with their pump.

[ElaineB]

Thanks Tincup, that is really helpful. Now I understand about ketones better and feel less confused! I shall fine away the information on Bernstein's work for a few years down the line but it looks very interesting.

Elaine

[mike]

I shall fine away the information on Bernstein's work for a few years down the line but it looks very interesting

Elaine, I've also followed Bernstein's advice with success for years. I'm type 2, but there are similarities. I would not file this away for a few years, but rather read first thing. Doctors love to throw insulin around, and while it will be needed in this case, keeping it as low as possible will lessen side effects - insulin does many things besides bring glucose into cells.