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Mody

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sofaraway

Senior Member
Thought I might put up a post with my explanation of the type of diabetes I have. I have MODY 3, some of you guys know that, some of you might not.

MODY- stands for maturity onset diabetes of the young. which is misleading as it implies type 2 in young people, that is NOT the case. MODY is not type 1 or type 2, but shares similarities with both types.

It is a monogenic type of diabetes, which means a single gene is involved. the gene is dominant. So if a parent has the gene the children will have a 50% chance of getting the gene and therefore getting diabetes.

there are 6 identified genes that casue MODY the 2 most common are MODY 2 and MODY 3

MODY 2 is caused by a defect in the glucokinase gene, this type is almost like a faulty thermostat, the level is set too high, so fasting blood sugar is elevated but these people tend not to see spikes in blood sugar and only have slightly elevated HbA1c's. it is thought that these people do not get complications as they have very stable blood sugars. these people will have higher fasting numbers but will pass glucose tolerance tests.

MODY 3 is the most common form of MODY and is due to a defect in the HNf1alpha gene. people with this type of MODY have normal insulin secretion as children but this reduces with time and diabetes is usually diagnosed by 25 years of age (but can be alot earlier or later) as the diabetes progresses.

people can often initially manage on oral sulphonyureas to which they are very sensitive to, needing alot smaller doses than type 2's. but as the diabetes progresses insulin is needed in alot of people, the time frame differs for each individual, some people can go 30 years before insulin is needed, some only 3 years. when insulin is used it tends to be very small doses due to people with MODY being very insulin sensitive and also natural insulin production will still exist.

There is always a family history of diabetes although it may have been diagnosed as type 1 or type 2 in other relatives. a feature of people with MODY 3 is they spill glucose into the urine at normal blood glucose levels.

people who have been diagnosed with type 1 who are found to actually have MODY have the chance to stop insulin and go onto tablets. but this must be done under supervision of experienced doctors.

people with MODY are very unlikely to get DKA due to natural insulin production, they may have very high blood gluocse levels but don't get the assosiated high ketone levels.

I have tried to explain in simple terms as I can, if anything is unclear please ask, or any more questions I will try to answer. Hope I haven't bored you all!

some links

http://www.diabetesgenes.org

http://www.childrenwithdiabetes.com/clinic/mody.htm

http://www.phlaunt.com/diabetes/14047009.php
 
Wow Nikki, very well explained. I didn't know what MODY was even though I had heard of it. Is this what they are calling Type 1 1/2 or Type 3?

Interesting stuff. Are you MODY 2 or 3?
 
MODY 3 is what I have a mutation of HNF1alpha to be exact :D

Oficially it's grouped under other types of diabetes as it's genetic, also in that genetic group is neonatal diabetes (which Aymes posted a story about in the news section here). 1.5 isn't a medical classification, it's something that is use don the net alot though.
 
Thanks Nikki 🙂 interesting stuff , Ive always wondered about Mody .
 
intresting it sound like my neighbour diabetes diagnosed at 23 and now is on tablet rather then injection for dinner
 
thanks Nikki, really interesting.

I would imagine a lot of people with mody just get misdiagnosed as the medical profession differs in their experience as we have all found? An assumption please correct me if im wrong, thinking out loud. 🙂
 
What a superb explanation Nikki, thank you🙂 I thought that Type 1.5 is another name for LADA (Latent Autoimmune Diabetes in Adults) - is it a form of MODY in older people? Just to add a touch of confusion!:confused:😱🙂
 
Hey Nikki,

This is a really good thread because there is a lot of ignorance about MODY, I include myself in this as I really dont know much about it either. I shall definately follow up the links you have put up (not tonight though as its a bit late!).

Well done on a great posting 😉
 
Thanks Sofaraway for your interesting post.

I have a question. So, is it possible then to be diagnosed with type 1 when really you are mody? If so, how can doctors tell which you really are? Sorry, i am posting this without yet looking at your links and maybe the answer is there!


Mand 🙂
 
Nikki ,

Thanks for posting that interesting stuff, I will be ready those links.

Cheers

Rossi
 
hi nikki
thank for posting that it was most informative it is always nice to explain things we dont know much about i guess , like rossi i shall be reading those links .
 
Nikki this is really excellent to see -- I've been confused about the exact nature of MODY for some time, not having looked it up! But it's really good to see this and have a place to turn.

Many thanks.
 
Thanks Nikki, I never knew about MODY before! 😱 It's really interesting to learn about different experiences of diabetes - I for one believe there's no such thing as an "easier" type of diabetes, each type presents it's own challenges so it's always really interesting to learn more!

Thanks again!
 
Thanks for this Nikki, it's really useful information. I remeber you suggesting to me that MODY was worth reading about when I was first diagnosed and I'm keeping it in cos they still haven't officially decided.
 
I wondered what MODY was I had never heard of it before you mentioned you have it a while back. How were you diagnosed with it out of interest, I think from memory you said that you were diagnosed as type 1 first by mistake...:confused:
 
1.5 isn't a medical classification, it's something that is use don the net alot though.

"1.5" is what my Consultant has written down on my notes and what he told me to use on life/travel insurance - are there different sorts of 1.5 ? (as you know he says I'm LADA). Not arguing with you - just curious...
 
Thanks for all your posts, didn't think it would generate so much interest.

type 1.5 seems to be used for anything that doesn't fit quite so neatly into the type 1 and type 2 boxes. So 1.5 can be used to cover both LADA and MODY. The way to tell the difference is that LADA is a slow onset of type 1 and is autoimmune in cause so will show positive antibodies. MODY is has a genetic cause. So hopelly that answers your question Alan, they are seperate conditions but are put under the same box. Faith I will look into that more, as I have don't recall 1.5 being used officially, maybe Dr's are starting to use it to refer to LADA.

Some people are diagnosed as type 1 and then later find out they are really MODY. If a slim teenager presents with symptoms of diabetes and high blood sugars the logical diagnosis is type 1. But if it's later found out that someone has MODY then plenty of people have sucessfully come off insulin. The only way to know for sure that it is MODY is to have a genetic test.

I was always correctly diagnosed. My family was already known to be a MODY family, I think we were the 13th family to be discovered. I started having high blood sugars and mild symptoms when I was 14, so they did a GTT and genetic testing and then I found out that I did have diabetes. So I was pretty lucky that I always had the correct diagnosis.

Hope that helped answer your questions, keep asking if you are still not sure 🙂
 
So 1.5 can be used to cover both LADA and MODY. The way to tell the difference is that LADA is a slow onset of type 1 and is autoimmune in cause so will show positive antibodies. QUOTE]

Yes - what you say is definately what I've been told - positive antibodies and at 62 it's got to be slow onset I guess. I'd be interested in anything else you can add. Do you get extra looking-after for being such a famously defined family ???

Best wishes - it's always good to read your posts.
 
Hey, thankyou for this thread. Just got recommended it in my newbie post. I certainly agree that there is some ignorance about this, there are mean people out there!

I'm possible MODY, diagnosed Type 1 had high blood sugars on insulin for 6 months then had to be taken off its been two years now. Though noone in my family has been found to be MODY though I have my suspisions about my dad, his mum my nan was said to be borderline diabetic too so perhaps this is where its come from!

How have you found doctor/nurse support to be? Do you have a specialist?
 
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