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MODY - no subforum - how young is young?

LittleGreyCat

Well-Known Member
Retired Moderator
Messages
4,396
Location
Suffolk, UK
Type of diabetes
Type 2
Treatment type
Tablets (oral)
Dislikes
Diet drinks - the artificial sweeteners taste vile.
Having to forswear foods I have loved all my life.
Trying to find low carb meals when eating out.
Having been pointed towards Blood Sugar 101 and Jenny Ruhl I find myself yet again confused.

https://www.diabetes.co.uk/diabetes_mody.html says "
Maturity Onset Diabetes of the Young affects approximately one or two per cent of people who have diabetes, and may often go unrecognised in its early stages.

It is a form of diabetes that develops before the patient reaches 25.
"
https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/mody says "
The key features of MODY are:
  • Being diagnosed with diabetes under the age of 25.
  • Having a parent with diabetes, with diabetes in two or more generations.
  • Not necessarily needing insulin.
"

However https://www.bloodsugar101.com/mody says "
Until the mid 2000s, the MODY form of diabetes were thought to only appear in people under age 25. However, genetic studies where the family members of people diagnosed with MODY were given genetic testing turned up the fact that people carrying the MODY genes are often misdiagnosed as having Type 1 or Type 2 diabetes.

It was also learned that MODY can develop into full-fledged diabetes as late as age 50. The Klupa study, referenced below, found that in one kind of MODY diabetes developed in 65% of those who carried the gene by age 25 years and in 100% by age 50 years, so more than 1/3 of all people with this kind of diabetes do not develop it in youth.
"

The Klupa study looks at MODY 3.
Unfortunately the references above don't provide a numbered list, but the paper refers to "HNF-1α" and the UK references say "
  • HNF1-alpha. This gene causes about 70 per cent of cases of MODY. It causes diabetes by lowering the amount of insulin made by the pancreas. Diabetes usually develops in adolescence or early twenties, and people with HNF1-alpha MODY generally don’t need to take insulin: they can be treated with small doses of a group of tablets called sulphonylureas (often used in type 2 diabetes).
"

So the most common form of MODY has been shown to present at up to age 50.
Given that it was originally held to present before the age of 25 this is quite a big shift, and might justify the statement "MODY has been shown so far to present at up to age 50".

It does look as though MODY isn't being considered for thin T2s who are diagnosed at up to 50.

This is causing me some mental indigestion.
I was overweight on diagnosis (but not obese) and have been a slim T2 for years now.
I was diagnosed at 57{and a half) but that doesn't seem an impossible distance from 50.

I was tested some years back and found to have some IR but low normal insulin level.
This doesn't quite fit the MODY profile (possibly) but it does seem to be within the realms of possibility.

One important thing is that MODY is genetic (although there are possible genetic causes for other types) so if a family gene causes late onset MODY then presumably the rest of the family should be tested.

All I would have to do is convince the surgery that MODY is a possibility and have a specialist genetic test.
I'm not feeling that this would be an easy ask.
Possibly a starting point would be c-peptide and GAD antibody tests which are more mainstream.

I could really do without this extra confusion at the moment!
 
Digging further (having noted that Exeter is the place where specialist tests are undertaken).
https://www.diabetesgenes.org/exeter-diabetes-app/ModyCalculator
"
  • Please note this calculator is only applicable to patients diagnosed under 35 as MODY is a young-onset form of diabetes. Could you test another family member?
"
Which will no doubt cause me a problem with being tested.
 
Having been pointed towards Blood Sugar 101 and Jenny Ruhl I find myself yet again confused.

https://www.diabetes.co.uk/diabetes_mody.html says "
Maturity Onset Diabetes of the Young affects approximately one or two per cent of people who have diabetes, and may often go unrecognised in its early stages.

It is a form of diabetes that develops before the patient reaches 25.
"
https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/mody says "
The key features of MODY are:
  • Being diagnosed with diabetes under the age of 25.
  • Having a parent with diabetes, with diabetes in two or more generations.
  • Not necessarily needing insulin.
"

However https://www.bloodsugar101.com/mody says "
Until the mid 2000s, the MODY form of diabetes were thought to only appear in people under age 25. However, genetic studies where the family members of people diagnosed with MODY were given genetic testing turned up the fact that people carrying the MODY genes are often misdiagnosed as having Type 1 or Type 2 diabetes.

It was also learned that MODY can develop into full-fledged diabetes as late as age 50. The Klupa study, referenced below, found that in one kind of MODY diabetes developed in 65% of those who carried the gene by age 25 years and in 100% by age 50 years, so more than 1/3 of all people with this kind of diabetes do not develop it in youth.
"

The Klupa study looks at MODY 3.
Unfortunately the references above don't provide a numbered list, but the paper refers to "HNF-1α" and the UK references say "
  • HNF1-alpha. This gene causes about 70 per cent of cases of MODY. It causes diabetes by lowering the amount of insulin made by the pancreas. Diabetes usually develops in adolescence or early twenties, and people with HNF1-alpha MODY generally don’t need to take insulin: they can be treated with small doses of a group of tablets called sulphonylureas (often used in type 2 diabetes).
"

So the most common form of MODY has been shown to present at up to age 50.
Given that it was originally held to present before the age of 25 this is quite a big shift, and might justify the statement "MODY has been shown so far to present at up to age 50".

It does look as though MODY isn't being considered for thin T2s who are diagnosed at up to 50.

This is causing me some mental indigestion.
I was overweight on diagnosis (but not obese) and have been a slim T2 for years now.
I was diagnosed at 57{and a half) but that doesn't seem an impossible distance from 50.

I was tested some years back and found to have some IR but low normal insulin level.
This doesn't quite fit the MODY profile (possibly) but it does seem to be within the realms of possibility.

One important thing is that MODY is genetic (although there are possible genetic causes for other types) so if a family gene causes late onset MODY then presumably the rest of the family should be tested.

All I would have to do is convince the surgery that MODY is a possibility and have a specialist genetic test.
I'm not feeling that this would be an easy ask.
Possibly a starting point would be c-peptide and GAD antibody tests which are more mainstream.

I could really do without this extra confusion at the moment!
Have you asked for a c-peptide & GAD test?
After reading about MODY do you think you may have it?
 
Have you asked for a c-peptide & GAD test?
After reading about MODY do you think you may have it?

Considering asking for tests.
Could I have MODY?
Well, outside the age range but I seem to be low insulin production and only some IR so not standard T2 (the 80% over weight over insulin IR brigade).
If I was diagnosed at 50 I would really be wondering.
 
Hi,
You stated that you were tested a few years back and found to have IR and your insulin count was normal but low.
What test was this specifically?
If you have IR, then the low insulin count would contribute to higher glucose levels.
So if when first tested, due to the symptoms you were experiencing, it would make sense that your doctor would assume T2.

I know this is what happened to me. My levels were high due to my diet. And when tested, it was logical to diagnose T2.

I have no idea what is wrong with you, but I would try and get more investigations.

Keep safe.
 
Having been pointed towards Blood Sugar 101 and Jenny Ruhl I find myself yet again confused.

https://www.diabetes.co.uk/diabetes_mody.html says "
Maturity Onset Diabetes of the Young affects approximately one or two per cent of people who have diabetes, and may often go unrecognised in its early stages.

It is a form of diabetes that develops before the patient reaches 25.
"
https://www.diabetes.org.uk/diabetes-the-basics/other-types-of-diabetes/mody says "
The key features of MODY are:
  • Being diagnosed with diabetes under the age of 25.
  • Having a parent with diabetes, with diabetes in two or more generations.
  • Not necessarily needing insulin.
"

However https://www.bloodsugar101.com/mody says "
Until the mid 2000s, the MODY form of diabetes were thought to only appear in people under age 25. However, genetic studies where the family members of people diagnosed with MODY were given genetic testing turned up the fact that people carrying the MODY genes are often misdiagnosed as having Type 1 or Type 2 diabetes.

It was also learned that MODY can develop into full-fledged diabetes as late as age 50. The Klupa study, referenced below, found that in one kind of MODY diabetes developed in 65% of those who carried the gene by age 25 years and in 100% by age 50 years, so more than 1/3 of all people with this kind of diabetes do not develop it in youth.
"

The Klupa study looks at MODY 3.
Unfortunately the references above don't provide a numbered list, but the paper refers to "HNF-1α" and the UK references say "
  • HNF1-alpha. This gene causes about 70 per cent of cases of MODY. It causes diabetes by lowering the amount of insulin made by the pancreas. Diabetes usually develops in adolescence or early twenties, and people with HNF1-alpha MODY generally don’t need to take insulin: they can be treated with small doses of a group of tablets called sulphonylureas (often used in type 2 diabetes).
"

So the most common form of MODY has been shown to present at up to age 50.
Given that it was originally held to present before the age of 25 this is quite a big shift, and might justify the statement "MODY has been shown so far to present at up to age 50".

It does look as though MODY isn't being considered for thin T2s who are diagnosed at up to 50.

This is causing me some mental indigestion.
I was overweight on diagnosis (but not obese) and have been a slim T2 for years now.
I was diagnosed at 57{and a half) but that doesn't seem an impossible distance from 50.

I was tested some years back and found to have some IR but low normal insulin level.
This doesn't quite fit the MODY profile (possibly) but it does seem to be within the realms of possibility.

One important thing is that MODY is genetic (although there are possible genetic causes for other types) so if a family gene causes late onset MODY then presumably the rest of the family should be tested.

All I would have to do is convince the surgery that MODY is a possibility and have a specialist genetic test.
I'm not feeling that this would be an easy ask.
Possibly a starting point would be c-peptide and GAD antibody tests which are more mainstream.

I could really do without this extra confusion at the moment!
Hi Little Grey Cat I just came across your post. I live in UK It was suggested to me by my Doctor about 3 years ago that I might have MODY as my family and myself are all very slim people and Great Grandfather, Grandfather, Father and Sister all had and have Type 2. I was diagnosed T2 at the age of 40 . My sister in USA strangely was diagnosed around the same time and one of my sons was diagnosed at around 40yrs again, none of us overweight. I am now 73. My control was good for 10 yrs and I only started tablets 20 years ago when my beautiful daughter was killed by a drunk and drugged driver who smashed into her car. However, I digress....for many reasons I have only just been able to access the MODY test and am awaiting the results. It was nice to feel there was somebody out there as confused as I am !! Prior to original diagnosis at 40yrs old the nearest brush I had with Diabetes was when I developed Gestational Diabetes at 31yrs whilst pregnant with my last child, my daughter. After having her my sugar levels went down ,I presume and the eventual diagnosis at 40 came from a urine sample in the local Well Women's Clinic. I haven't posted here for some years and definitely not since the suggestion of MODY came up, so as you can imagine I was thrilled to see your post. The reason I answered is because when I was interviewed before being given the chance to have a test for MODY the young guy asking me said he didn't think I'd be allowed too because I was diagnosed too late in age at the age of 40 and MODY patients were usually diagnosed in their youth!! I'm hoping that if either of us can find more info, we can pass it on to each other. I also wondered, do you have others in your family with type 2? Thank you for posting and good luck with you research....I will post if and when I get my results !!!
 
Hi Little Grey Cat I just came across your post. I live in UK It was suggested to me by my Doctor about 3 years ago that I might have MODY as my family and myself are all very slim people and Great Grandfather, Grandfather, Father and Sister all had and have Type 2. I was diagnosed T2 at the age of 40 . My sister in USA strangely was diagnosed around the same time and one of my sons was diagnosed at around 40yrs again, none of us overweight. I am now 73. My control was good for 10 yrs and I only started tablets 20 years ago when my beautiful daughter was killed by a drunk and drugged driver who smashed into her car. However, I digress....for many reasons I have only just been able to access the MODY test and am awaiting the results. It was nice to feel there was somebody out there as confused as I am !! Prior to original diagnosis at 40yrs old the nearest brush I had with Diabetes was when I developed Gestational Diabetes at 31yrs whilst pregnant with my last child, my daughter. After having her my sugar levels went down ,I presume and the eventual diagnosis at 40 came from a urine sample in the local Well Women's Clinic. I haven't posted here for some years and definitely not since the suggestion of MODY came up, so as you can imagine I was thrilled to see your post. The reason I answered is because when I was interviewed before being given the chance to have a test for MODY the young guy asking me said he didn't think I'd be allowed too because I was diagnosed too late in age at the age of 40 and MODY patients were usually diagnosed in their youth!! I'm hoping that if either of us can find more info, we can pass it on to each other. I also wondered, do you have others in your family with type 2? Thank you for posting and good luck with you research....I will post if and when I get my results !!!
Hi
I too had gestational diabetes at 31 with my 2nd child, who’s now 25
I was diagnosed with Hnf4a MODY earlier this year at 56, even though nobody in my family has ever been diagnosed with any form of diabetes
Hope your results come through quickly, mine took about 3 months
 
Hi,
You stated that you were tested a few years back and found to have IR and your insulin count was normal but low.
What test was this specifically?
If you have IR, then the low insulin count would contribute to higher glucose levels.
So if when first tested, due to the symptoms you were experiencing, it would make sense that your doctor would assume T2.

I know this is what happened to me. My levels were high due to my diet. And when tested, it was logical to diagnose T2.

I have no idea what is wrong with you, but I would try and get more investigations.

Keep safe.
Just catching up with posts.

The test was HOMA-IR which basically measures BG and insulin levels and calculates a value for IR.

I had low(ish) insulin level and elevated (but not sky high) blood glucose so the insulin wasn't being fully effective in reducing my BG.
 
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