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I was told by a senior diabetes doctor the other day that about 10% of T2s have a rarer form of the condition that does not progress. Has anyone heard of this. I can't find anything about it.It might be called "Glucose Kinetase" type.

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Is this what you're talking about?
As written about here, it's a form of MODY

That is MODY-2, a form of genetic diabetes which causes chronic elevated fasting blood sugars. I had not heard rates nearly as high as 10%.

I was diagnosed diabetic in 2002 aged 56. Howeever, My condition is likely to be a genetic one as I'm 4th in a direct line. My mother thought she was clear until she was diagnosed at approxximately 90. She keeps getting readings around 180, despite not taking medication or restrictring her diet. I would have much higher ones if I did that.
It was an endocrinology consultant who said the number was about 10% of all T2s
I may be one of these people., although I did have syndrome X. Iwas overweight,[still am, but less so] but never morbidly obese. Here in Britain they are not interested in which form of diabetes you have, so I'm never likely to find out.

G'day Hana

I think your endocrinology consultant may be mistaken. I don't know her sources, but Jenny Ruhl, a writer I respect who has MODY ( a form which did progress) says this:

MODY forms of diabetes are believed to affect around 2% of all people diagnosed with both type 1 and type 2 diabetes.

That would be in line with their relative rarity in appearance on diabetes forums I am on.

Cheers, Alan, T2, Australia.
Everything in Moderation - Except Laughter.

Yes, It's stated here that 1-2% of people with diabetes have various forms of monogenic diabetes [ and that the term MODY should be considered obsolete]

I was at a meeting with the endocrinologist not as a patient, but as the wife of a T1, whose treatment in hospital had caused us to make an official complaint. The original problem dates back a year,[that's how long it took to get the meeting!!] so much of the complaint was no longer relevant.
I would not be surprised if this very senior doctor was trrying to "Snow" me. I commented at one point in the discussion, that I'm a T2 anf keep my Bg in the range of 5mmol/l to 6mmol/l with an HbA1cconsistently on the mid 5%s, on minimal Metformin only and with no progression in that I've never had to increase my medicationI'm a low carber!.. He cannot accept it's possible I suspect. Thus had to explain it away.

Hi Hana,
This subject has been very confusing to me. When I first joined, the idea that T2 was progressive was a shock to me. My experience with my extended family (aunt, many cousins etc.) has been that the T2 has not progressed. Like you, they are overweight a little and they exercise and eat healthy diets but no meds. They certainly don't have to test and go as low carb as I do. I was treated aggressively with sulfs and I'm wondering if that played a role. I'm also thinking that there might be a genetic factor on the other side of my immediate family which has caused my sibling and I to struggle with this so much more than the rest. The more I try to search for answers, the more confused I become.

Maybe your relatives are more open about their medical conditions than mine are. I have several cousins and an aunt who appear, on the surface, to be "overweight a little and they exercise and eat healthy diets but no meds."

Over time, with observation and a few leading questions I have found that most are taking several meds or insulin or are progressing with complications. They just don't broadcast it to the world.

Cheers, Alan, T2, Australia.
Everything in Moderation - Except Laughter.

Hi Alan,
My brother and I have been struggling with disease and he just passed away last week at age 57. We are not sure why yet.
My relatives have been at my side trying to assist for several years. My aunt who is 83 and was diagnosed many years before me is still managing on diet and exercise. We are very close. When I developed neuropathy, she was an enormous support in assisting me to stop all the drugs except Met and get my A1C down from 10.1 to 6.3. She mainly provided the moral support I needed to fight the endo and stop the drugs. Like me, she has high morning numbers. She does not however, have problems with fasting throughout the day like I do. I must snack throughout the day to keep my numbers down. My ability to eat carbs has decreased and hers has not. I know this because we check our meters. It would seem that my diabetes is progressing and hers is not.
Nothing worked for my brother. His numbers have always been high. He certainly ate carbs but even when he abstained for long periods and became vey slim, there was not much change. None of those pills ever worked for him. I've never had to work as hard as he did. It seems like my aunt and cousins will never have to work as hard as I do. One of my cousins wonders if she even has diabetes at all and has repeatedly questioned the diagnosis. Her doctors however, dispute this as her A1C does creep up during periods of high stress. She continues to fight their insistance that she take Metformin.
There is a recent post on the LADA group where a member maintains that her mom has had a 42 year honeymoon. Based on my aunt's experience, I believe her!
I think the fact that some progress while others do not has led to the rampant mistreatment of type 2 diabetics. My brother not only had to fight this disease for 18 years but he had to endure all the guilt and shame as well. I managed for 4 years with diet and exercise alone and, despite his efforts, he was never able to do this. He periodically gave up when he could not longer endure the rude remarks and horrible complication threats piled on by the doctors and endos. We attended a support group for years where we were repeatedly told that we must get up off the couch and begin by walking once around the livingroom etc. etc. What garbage. Throughout those 18 years, my brother marched every weekend in a Drum Corps carrying a big bass drum. Of course they also practised throughout the week. I have a picture on my page which was taken late this summer. I don't believe he looks like the type 2s who are always portrayed in the media.
I feel so hopeless. On the one hand, the Canadian Diabetes Association states in their protocols that type 2 is progressive. This is diametrically opposed to the info that they spread on the media and in their education classes. You will never have to take insulin they told us over and over again. A t2 on insulin indicated failure.
Sorry to hijack your thread Hana but I do believe that your T2 might not progress. Who knows what type we are anyway because they always refuse to test? We have no idea whether our pancreas is functioning or not. You seem to be doing everything right. I pray that your beta cells will be preserved for you.

Thanks for the background. Fascinating and also sad.

There are certain strains which seem to be tightly familial. A friend on a different forum treated hers like an investigative reporter, tracking down family links. I put her in touch with Jenny, who wrote this page on MODY and that led to further discoveries.

I notice she has started to write about her search here: My Story with MODY Diabetes. Also scroll down to her posts in this thread, which give some of the family background. I have no idea whether that is relevant to your situation, but I think you will find it interesting.

The more I discover about diabetes, in all it's forms, the more I realise how little is really known at this time.

Cheers, Alan, T2, Australia.
Everything in Moderation - Except Laughter.




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