# Told might have MODY not type 1



## Veronica38@ (Jan 16, 2020)

hi ! I was diagnosed with type 1 diabetes 10 years ago. Have just been told this is a mid diagnosis and I probably have MODY but they need to do further blood tests. Have been told to keep taking insulin. Has anyone else been through this or got any advice !?


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## Northerner (Jan 16, 2020)

Veronica38@ said:


> hi ! I was diagnosed with type 1 diabetes 10 years ago. Have just been told this is a mid diagnosis and I probably have MODY but they need to do further blood tests. Have been told to keep taking insulin. Has anyone else been through this or got any advice !?


Hi Veronica, welcome to the forum  How have things been for you over the past 10 years? What prompted them to think you may not be Type 1? I'm in a similar position - I was diagnosed Type 1 in 2008, but about 4 years later I had had to reduce my background/basal insulin (lantus) to zero because I was still getting lows on the minimum dose. I haven't needed it since, but I have always needed my bolus/rapid insulin (novorapid) with food. I June last year my consultant finally decided to do a C-peptide test, which showed I am producing a 'reasonable' amount of my own insulin. MODY was suggested to me, but when I saw the consultant again in December we concluded that I didn't really fit into any of the MODY sub-types, so currently I am just 'Type Weird'  I will just carry on as I have been doing, although I know some people have been able to stop the insulin and move to an oral medication, like gliclizide - much will depend on your personal situation and requirements. Have you looked at the Exeter University site to read up about MODY?

We do have a few members who are MODY, although I don't think they post regularly, but hopefully they might be reading and spot your post  If you can fill us in on a few more details that would be helpful e.g. what insulin you use, what prompted the suggestion etc.


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## Veronica38@ (Jan 16, 2020)

Hi there that’s for your response. Things have been ok thanks I’ve been managing pretty well although I did have a feeling I didn’t need as much insulin as I was giving myself so have reduced. Still get high blood sugar readings though at times. It was pure chance I got tested to check I was type 1 as i moved areas and here they automatically see you at the hospital for type 1 and they asked how I was diagnosed. I hadn’t had a test to check if I was actually type 1 and they suggested it at the hospital and They let me know yesterday I still have a good amount of insulin production so they need to do further tests to find out what’s going on. 

Thanks for the info on looking at Exeter Uni I will def check that out. Obviously need to wait for further blood tests to determine exactly what’s going on. 








Northerner said:


> Hi Veronica, welcome to the forum  How have things been for you over the past 10 years? What prompted them to think you may not be Type 1? I'm in a similar position - I was diagnosed Type 1 in 2008, but about 4 years later I had had to reduce my background/basal insulin (lantus) to zero because I was still getting lows on the minimum dose. I haven't needed it since, but I have always needed my bolus/rapid insulin (novorapid) with food. I June last year my consultant finally decided to do a C-peptide test, which showed I am producing a 'reasonable' amount of my own insulin. MODY was suggested to me, but when I saw the consultant again in December we concluded that I didn't really fit into any of the MODY sub-types, so currently I am just 'Type Weird'  I will just carry on as I have been doing, although I know some people have been able to stop the insulin and move to an oral medication, like gliclizide - much will depend on your personal situation and requirements. Have you looked at the Exeter University site to read up about MODY?
> 
> We do have a few members who are MODY, although I don't think they post regularly, but hopefully they might be reading and spot your post  If you can fill us in on a few more details that would be helpful e.g. what insulin you use, what prompted the suggestion etc.


 there


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## Northerner (Jan 16, 2020)

Veronica38@ said:


> Hi there that’s for your response. Things have been ok thanks I’ve been managing pretty well although I did have a feeling I didn’t need as much insulin as I was giving myself so have reduced. Still get high blood sugar readings though at times. It was pure chance I got tested to check I was type 1 as i moved areas and here they automatically see you at the hospital for type 1 and they asked how I was diagnosed. I hadn’t had a test to check if I was actually type 1 and they suggested it at the hospital and They let me know yesterday I still have a good amount of insulin production so they need to do further tests to find out what’s going on.
> 
> Thanks for the info on looking at Exeter Uni I will def check that out. Obviously need to wait for further blood tests to determine exactly what’s going on.


Sounds a lot like me then - I moved from Southampton to Harrogate just over a year ago so am seeing a different consultant now. The one in Southampton knew I was a bit 'odd' and kept threatening to give me a C-peptide test but it never materialised. The new one decided to go ahead. My insulin requirements for meals has varied quite a lot - from around 40 units in a day to just 5 units a few weeks ago. Currently I'm on about 12 units, although it has been falling over the past week. I know another person who was diagnosed around the same time as me, Type 1 for 10 years but started needing less and less insulin, and she has now been off it completely for over a year, just having half a gliclizide tablet every now and again. Diabetes really can be far more complicated than a lot of people might imagine!   I wonder if they are going to do the genetic tests for MODY? They decided not to with me, as I have always managed things well and a change of diagnosis is unlikely to result in a change in treatment. 

A former member of the forum is MODY, but she was treated initially with oral medication then moved onto insulin and now uses a pump, so things can go in both directions!  Do let us know if you find out anything else


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## SB2015 (Jan 16, 2020)

Welcome to the forum Veronica.
It sounds like you made a good move, and have benefitted from being placed in the hands of the hospital.
You obviously have a good sense of what your body needs, and it will be good to have a correct diagnosis as it is likely to change your management.  Let us know how you get on.


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## everydayupsanddowns (Jan 16, 2020)

Hope the test results come back soon @Veronica38@ and that they can be used to provide more appropriate treatment. I believe that there are genetic tests that can be done to confirm MODY.


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