MODY 2 diabetes and keto


(Eve) #1

Hey there (I love the plugin that shows similar topics when you type in the title)

I couldn’t find real discussion about this on the internet, sorry if I missed something. Last year I’ve been diagnosed with MODY2 diabetes - as a quick explanations for those who never heard about it (such as half of the doctors I’ve met XD), MODY2 is a genetic mutation which causes loss-of-function in the glucokinase molecule, making it less sensitive too glucose, thus triggering insoline secretion only at higher levels. This means my average BG is around 110. No meds needed, just some regular tests.

Here comes my question. On keto, we cut off carbs and sugars to avoid blood sugar spikes that would generate insuline production. Knowing my GCK is retarded (:laughing:), wouldn’t it mean that in case of BG drop (like after an effort) I should be able to eat a bit more glucose than the average human before secreting insuline?

I am not trying to cheat on my keto :laughing: Consider this as a free thought (I study biology, so maybe professional curiosity?). Maybe you know something more about it? I’m curious.


(Ellenor Malik (Mrs Butter Mayo)) #2

if it was me I would probably be demanding meds to get my blood glucose below 5 mmol… but that’s just me

But yeah you should be able to bring up a hypo with 1g of dextrose solution without seeing an insulin response. Has that been your experience?

I don’t actually know anything about MODY but if your glucokinase is slow… Yeah.

(Karen) #3

Perhaps you could, but not sure why you would. Fascinating, never heard of it. What’s your hA1c? If you don’t mind my asking? Does it make you carry extra weight?

(bulkbiker) #4

Spooky I only heard about MODY2 yesterday on Twitter and then you pop up here…
It was described as moderate hyperglycemia which I though t was a bit of an oxymoron… Not much studied though…

(Eve) #5

I’ve never got it tested, really, but I’m supposed to soon. I’ll update you then, but I know my father (who has the same mutation) had been tested for a month and his average glucose was fine.
As for the weight, I am also hypothyroidic and am on sterids, so it is hard to tell which one exactly makes me overweight the most XD

@ellenor2000 Never tested ^^ As I said, doctors often forget this diabetes exist, so I didn’t do any real tests, honestly

(Eve) #6

This on the other hand is known as the Baader-Meinhof Phenomenon XD Quoting wiki:

The Baader–Meinhof effect , also known as frequency illusion , is the illusion in which a word, a name, or other thing that has recently come to one’s attention suddenly seems to appear with improbable frequency shortly afterwards (not to be confused with the [recency illusion]


Wow, great question and frankly I have no idea. It seems plausible.

It would be great to see some data collection on this, if you have the inclination to do so?

(Full Metal Keto) #8

I’m on a steroid too, prednisone. Even at a lose dose after 8 months of keto I still have elevated BG. We have to fight extra hard to push blood sugar down. Mine has been improving very slowly. But still the three month average glucose is about 118.


(Give me bacon, or give me death.) #9

I think you are on to something, but although your insulin is probably lower than anyone else’s at the same level of carb intake, elevated serum glucose brings its own troubles, such as glycated hemoglobin’s being readier to clot, which increases the risk of stroke and heart attack.

I don’t believe you need a drug to lower your glucose (though I am not a doctor, and perhaps do not comprehend all the ramifications), because it seems to me that very low carbohydrate intake should take care of that. If you keep your carb intake low, then your serum glucose level will be managed by your glucagon’s stimulating gluconeogenesis in the liver, which is a completely different mechanism of glucose regulation.

At any rate, I would be interested to know the results if you went either very-low-carb or zero-carb. If those approaches failed to lower your serum glucose, then it would definitely seem a good idea to speak with your physician.

Also, for what it’s worth, there are experimental indications, mostly in mouse models, I believe, that glucagon is the primary driver of serum glucose levels, and insulin’s job is simply to keep the level from getting out of hand. Mice without the ability to produce either glucagon or insulin had perfectly normal serum glucose levels, even on a high-sugar diet. (These were beta-cell knockout mice with chemically destroyed alpha cells, in the paper I read.)


Just curious. … how did you finally get the diagnosis? Did it come up coincidentally on a DNA test or did someone decide to look for it?

(Eve) #11

Oh my, that’s a lot to answer XD In order then XD

@David_Stilley I’m on keto for 3 days right now, so I’m not sure how it goes yet XD But I’m glad to see that it’s feasible to lower it, even on meds

@PaulL As I said, I’m on keto for three days. Ask me in a week XD I can update this thread later. and maybe more people will be able to say how keto worked for MODY2 (it’s different from mody3 ^^)

@carolT I might take my father’s old glucometer to run a few tests, that would be interesting :smiley: My fingers will hurt though. As for the diagnosis, my father and I have always had elevated blood sugar levels. The only time I recall having a good result was the time when I forgot about the test and drank a glass of coke a few hours before XD
My brother (10 yo) had some health problems, so he also had blood tests which showed elevated BS. He then took the test when you eat sugar before the sampling, the results returned normal. My father took the same test, there was a normal insuline reaction. We had the luck to meet a smart doctor who thought about MODY - only way to diagnose it was a DNA test, and it came back positive! :smile: I can even give you my exact mutation: G>C, t. Val412Leu in the GCK gene. It is not even in the databases, so there are no real researches on it specifically

(Eve) #12

My dear ketoers, her I come with an update… and some questions. I need help.

It took me some time to find the glucometer. I’ve been on keto for 3 weeks now and lost 3kg (6lbs). Last week I’ve tested my blood sugar in the morning, before breakfast - 122mg/L. Even for me, that is quite a lot! But hey, that’s fine.
Today I’ve checked my glucose before breakfast- 145mg/L. That’s too much, knowing I usually have around 110 in the morning. I’ve decided to measure my glucose every hour that day - in red you can see my meals, in yellow the moment when I drank a glass of coke zero

What I get from this data:

  • it seems I get no insuline spike after eating (good, that’s the point of keto)
  • I have an extremely high blood sugar in the morning, which returns to normal around 8h later. Sidenote here- I felt extremely tired at that moment, I’ve slept between 14 and 15.

What this can imply:

  • I produce insuline continuously till 14, to the point where I get extremely tired
  • This might cause slower weightloss, as I create fat half day round

Some raw data now, to find out what causes this:

  • From what I’ve learned, Glucokynase (GCK) is a signaling protein, which gives the signal to start producing insulin. In case of a low sugar consumption or fasting, GCK transcription is reduced
  • The process of glycogenogenesis (which releases glucosis into the bloodstream) uses GCK as a safety lever. So: WHILE GCK is not calling for insuline -> add sugar to bloodstream!
  • Between 2 and 4 am, there is a massive release of glucose in bloodstream, to prepare the body to waking up (Somogyi effect)

Fatty acids in significant amounts amplify GK activity in the liver, while long chain acyl CoA inhibits it.

How I interpret this:

  • My low consumption of carbs lead to a reduced transcription of GCK
  • This combined with the fact my GCK is mutated makes it response too small in the morning, when blood sugar rises
  • As soon as I eat my breakfast, GCK transcription is activated which triggers insulin reaction, without making it spike, which explains why the regulation is sooo slow.
  • Reading what Wiki says, I should eat more fat in the morning.

What do you think? Maybe some of you could provide me with hour by hour data of they blood sugar levels? It would be nice to have data from multiple subjects on keto, it’s hard to compare with “regular” people.
Also, maybe you have an idea on how to deal with this elevated blood sugar in the morning? Even for me, it’s quite high.
Tomorrow I’ll continue the experiment, this time fasting till the afternoon, allowing myself a coffee with heavy cream

(Ellenor Malik (Mrs Butter Mayo)) #13

Is it not possible to have the steroid reduced slowly to reduce the hyperglycemic effects?

(Full Metal Keto) #14

@ellenor2000 I’m on 5mg. per day. The lowest dosage for organ transplant stability.

(Ellenor Malik (Mrs Butter Mayo)) #15

You said you’re sleeping more. I’ve heard that that’s a common side effect of hyperglycemia. For an extreme example, I know someone who went into a diabetic coma while I was chatting with him on Telegram - when he woke up, his blood sugar was 448mg/dL (24.9 mmol/L). Not achievable in a nondiabetic without somatostatin and glucose or gluc-agonist infusion (which induces temporary type 1-like diabetes, so, really, not possible in a nondiabetic)

It would make sense to use a ketone meter as an indirect test of insulinaemia - low ketones is correlated with higher insulin.

Do you find your English is worse when you’re hyperglycemic?

(Ellenor Malik (Mrs Butter Mayo)) #16


(Ellenor Malik (Mrs Butter Mayo)) #17

I’m sort of curious what’s going on there - is supraphysiological cortisol just the norm for transplant recipients or is it more of a salvage-therapy sort of thing?

(Eve) #18

I’ve been sleeping more my whole life - actually I can’t live without an alarm clock (I wake up at totally random hours, and as I hate waking up after 9am, the only option is an alarm). So this kind of nap is pretty normal for me, I can fall asleep whenever I want to. My sugar never seems to go over 150mg (actually it is the only time I’ve seen it so high), really

What do you call “hyperglycemia”? Because most of the time I am around 110mg/L

(Ellenor Malik (Mrs Butter Mayo)) #19

The reference range without carbohydrate for a normal person with a normally-functional glucokinase is from 70 to 100mg/dL (3.9 - 5.55 mmol/L), and not counting a low if below without symptoms.

Hyperglycemia is anything above what you feel is normal. Generally when I’m around or above 115mg/dL I have severely impaired mood regulation, can’t push as hard on my bike and feel tired as hell. Someone who is at around 450 (as my friend was) may not be able to stay awake.

Did the blood sugar problem recently come up or have you always been a bit on the high side?

Is the somnolence worse when the blood sugar is higher? I’m just trying to tease apart whether you’re just a sleepy person or whether it’s hyperglycemia doing this to you.

I am not a doctor and nothing I say is to be interpreted as medical advice (except as cosigned by a doctor or any relevant personal experience you have), just a personal opinion of a random stranger.