Any advice on a MODY diagnosis, please

[Claire S]

Hello,
After a rotten 8 weeks and a 12 days stay in hospital With an horrendous infection I’m currently being assed for a MODY diabetes. I have no classic diabetic symptoms only a high blood sugar reading whilst in the middle of a raging infection. Infection has cleared and my blood sugars appear to have stabilised! I’m fumbling around in the dark at the moment looking for answers. So any advice would be gratefully received.
cheers. Xx

 

[Inka]

I’m Type 1 but I had a MODY test because they weren’t sure if I could be MODY rather than Type 1. Have you actually had the MODY blood test or are you still being considered for it? I had initial tests to see if it was appropriate to go on and have the full genetic MODY test, if that makes sense.

Sorry you’ve been so ill.

 

[Claire S]

In hospital the consultant said he would take blood for genetic testing but would wait until I was well. My daughter has just been diagnosed too at 21 and my mum and grandad both are and were diabetic so the genetic link is very strong.
currently waiting for an appointment to confirm it all.
I suppose I’ll know more when that’s done. At the moment I’m just monitoring blood sugar and modifying my diet as best I can.
I don’t have any other symptoms so the seem to have ruled out type 1 and 2.
thanks for your thoughts

 

[Claire S]

I’m Type 1 but I had a MODY test because they weren’t sure if I could be MODY rather than Type 1. Have you actually had the MODY blood test or are you still being considered for it? I had initial tests to see if it was appropriate to go on and have the full genetic MODY test, if that makes sense.

Sorry you’ve been so ill.

 

[Inka]

That’s a strong family history as you said so it’s very good they’re testing for MODY (it was years before they tested me). As i mentioned above, it turned out I didn’t have it, but when it was a possibility I did a fair bit of reading about the different types of MODY and different treatments as I felt this would help me prepare for any MODY diagnosis. You might well have already done that 🙂

https://www.diabetesgenes.org/what-is-mody/

To be honest, it sounds like you’re very much on top of things with testing your blood sugar and being aware of your diet.

 

[grovesy]

As I understand there is more than one Type of MODY.

 

[Claire S]

That’s a strong family history as you said so it’s very good they’re testing for MODY (it was years before they tested me). As i mentioned above, it turned out I didn’t have it, but when it was a possibility I did a fair bit of reading about the different types of MODY and different treatments as I felt this would help me prepare for any MODY diagnosis. You might well have already done that 🙂

https://www.diabetesgenes.org/what-is-mody/

To be honest, it sounds like you’re very much on top of things with testing your blood sugar and being aware of your diet.

Thanks ever so much for the link. The whole internet is a scary place to start looking for information. The consultant was actually’excited’ by my diagnosis. I could think of many words to describe it, excited not being one of them. Apparently it’s a cluster. You need three generations and I was part of four which meant he could go to his boss and ask for the money for the blood test.
it’s a weird thing all round but I’m lucky. They tried me on glicazide in hospital but it pushed me too low so now I’m just diet controlling hopefully successfully but every day is different.

 

[Claire S]

As I understand there is more than one Type of MODY.

The last thing I read said there were 11 but they are finding more continuously now they can do clever things with the genome.

 

[grovesy]

The last thing I read said there were 11 but they are finding more continuously now they can do clever things with the genome.

Give it a few years and it will be the same for all Diabetes, researchers have identified around 50 types, that respond to different treatments.

 

[Claire S]

Give it a few years and it will be the same for all Diabetes, researchers have identified around 50 types, that respond to different treatments.

Very true, my mind is boggling with all the information. I’m learning very quickly that diabetes is very different for each individual.

 

[Lindarose]

Hi Claire
I read your post and thought it’s time I did something other than read this forum as I haven’t posted on here for a few years. But I just wanted to let you know what happened to me.

A year ago I became a volunteer In a research trial called ReTune which is a follow on from the Direct Study in Newcastle. It was to see if normal or slim type 2 diabetics could reduce the fat on internal organs to potentially reverse diabetes. Unfortunately I didn’t have much liver fat and despite weight loss my bg levels didn’t change.

However as part of the trial I had a series of blood tests done and some were sent to Exeter for genetic testing.

And I got the results yesterday and it turns out I’m not type 2 at all. I’m a type of MODY called glucokinase which is genetic and it’s really good news as means I can stop metformin because it’s not needed. This type of diabetes has little or no risk of complications and means my bg levels run higher than normal but not enough higher to be a problem.

There is a history of diabetes in my family and once they saw the weight loss wasn’t helping they suspected this might be the case. Professor Roy Taylor explained things to me yesterday. I am very lucky to have met him a few times over the past year during the trial!

There are other types of MODY and some details are on the diabetes.org website.

I hope things go well for you and maybe you will have the same outcome as me which seems like a good one! This testing isn’t done routinely as it’s a very rare type.
Good luck!

And hi to anyone who may remember me from a few years ago!

 

[Claire S]

Hi Claire
I read your post and thought it’s time I did something other than read this forum as I haven’t posted on here for a few years. But I just wanted to let you know what happened to me.

A year ago I became a volunteer In a research trial called ReTune which is a follow on from the Direct Study in Newcastle. It was to see if normal or slim type 2 diabetics could reduce the fat on internal organs to potentially reverse diabetes. Unfortunately I didn’t have much liver fat and despite weight loss my bg levels didn’t change.

However as part of the trial I had a series of blood tests done and some were sent to Exeter for genetic testing.

And I got the results yesterday and it turns out I’m not type 2 at all. I’m a type of MODY called glucokinase which is genetic and it’s really good news as means I can stop metformin because it’s not needed. This type of diabetes has little or no risk of complications and means my bg levels run higher than normal but not enough higher to be a problem.

There is a history of diabetes in my family and once they saw the weight loss wasn’t helping they suspected this might be the case. Professor Roy Taylor explained things to me yesterday. I am very lucky to have met him a few times over the past year during the trial!

There are other types of MODY and some details are on the diabetes.org website.

I hope things go well for you and maybe you will have the same outcome as me which seems like a good one! This testing isn’t done routinely as it’s a very rare type.
Good luck!

And hi to anyone who may remember me from a few years ago!

Thank you so much for your reply.
unfortunately I was also diagnosed with poly cystic kidneys alongside diabetes when I was I going through this dreadful infection that put me in hospital for 12 days.
Reading various things there is a MODY that includes renal cysts and similar to your type appears to be easier to manage than the T2, in theory at least.
currently I’m not on any medication and as my infection abated so did my blood sugar. So I am hopeful I can manage on diet alone.
I will look up that study, thanks for the information. I’m so pleased it’s good news for you. I feel very lucky to be considered for testing as it really isn’t a routine thing and it’s happening almost immediately for me.
Thanks again.

 

[grovesy]

Hi Claire
I read your post and thought it’s time I did something other than read this forum as I haven’t posted on here for a few years. But I just wanted to let you know what happened to me.

A year ago I became a volunteer In a research trial called ReTune which is a follow on from the Direct Study in Newcastle. It was to see if normal or slim type 2 diabetics could reduce the fat on internal organs to potentially reverse diabetes. Unfortunately I didn’t have much liver fat and despite weight loss my bg levels didn’t change.

However as part of the trial I had a series of blood tests done and some were sent to Exeter for genetic testing.

And I got the results yesterday and it turns out I’m not type 2 at all. I’m a type of MODY called glucokinase which is genetic and it’s really good news as means I can stop metformin because it’s not needed. This type of diabetes has little or no risk of complications and means my bg levels run higher than normal but not enough higher to be a problem.

There is a history of diabetes in my family and once they saw the weight loss wasn’t helping they suspected this might be the case. Professor Roy Taylor explained things to me yesterday. I am very lucky to have met him a few times over the past year during the trial!

There are other types of MODY and some details are on the diabetes.org website.

I hope things go well for you and maybe you will have the same outcome as me which seems like a good one! This testing isn’t done routinely as it’s a very rare type.
Good luck!

And hi to anyone who may remember me from a few years ago!

Thank you for posting this.
I had heard Professor Taylor say on TV before that his weight loss approach to work you have to be definitely Type 2. Though he did not say if he did any tests first.
As I understand testing for MODY is not cheap at the moment, I suppose if the genetic testing cost comes down, more people maybe tested.

 

[Lindarose]

Yes grovesy there were so many bloods taken on each visit including various anti body ones to rule out type 1 and other types of diabetes.
I think it’s mainly cost and of course I get that. But if I hadn’t done the trial I would never have known. Also little is known by most GPs about the many other types of diabetes so I wonder what mine will think when they get a letter saying I’m not type 2!

My family can now opt to be tested. It can be important being as it’s a genetic thing and there is 50% chance I’ve passed it to my children.

 

[grovesy]

Yes grovesy there were so many bloods taken on each visit including various anti body ones to rule out type 1 and other types of diabetes.
I think it’s mainly cost and of course I get that. But if I hadn’t done the trial I would never have known. Also little is known by most GPs about the many other types of diabetes so I wonder what mine will think when they get a letter saying I’m not type 2!

My family can now opt to be tested. It can be important being as it’s a genetic thing and there is 50% chance I’ve passed it to my children.

This is good to here your family can get tested. Even they have it that can help get the correct treatment.
@Stitch147 has been classed as MODY as her GP seemed to of heard of it, but I believe she has not been tested. Though I do believe she contacted the Exeter team. She is on holiday at the moment so is not around.
I have just thought I suspect the press and media concentrate on the diet and losing weight aspect of his research, as they are the headline grabbers.

 

[Claire S]

Yes grovesy there were so many bloods taken on each visit including various anti body ones to rule out type 1 and other types of diabetes.
I think it’s mainly cost and of course I get that. But if I hadn’t done the trial I would never have known. Also little is known by most GPs about the many other types of diabetes so I wonder what mine will think when they get a letter saying I’m not type 2!

My family can now opt to be tested. It can be important being as it’s a genetic thing and there is 50% chance I’ve passed it to my children.

I agree, I expect I’m being tested so quickly because I ended up in hospital and met the diabetic consultant almost by chance and by passed the GP! Hopefully this testing will mean you receive the most appropriate treatment. Cost is a huge issue but if it means better more effective treatment that will only save money in the long run.

 

[everydayupsanddowns]

Great to see you posting again @Lindarose

And welcome to the forum @Claire S 🙂

 

[Lindarose]

Thanks Everyday. I’m not sure my new type gives me much to post about now. But I’ll carry on reading the forum and hoping everyone keeps well

 

[grovesy]

Thanks Everyday. I’m not sure my new type gives me much to post about now. But I’ll carry on reading the forum and hoping everyone keeps well

Just pop in if you feel you can add anything like you did the other day. I was very interested in what been part of a study entailed.
I few years ago @stephknits was part of a trail and she feed back some of the findings it is nice to know these things.