Anyone else with mody

hisjen84

Well-Known Member
Messages
73
Type of diabetes
Other
Treatment type
Tablets (oral)
i have been told that due to family history and ruling out type 1 that I have a high chance of mody. Is there anyone else that has had there bloods sent to Exeter, I'm curious as to how long it takes to get the results back.
I'm waiting for an appointment with a specialist but haven't really been given any time frames thanks
 

andcol

Well-Known Member
Retired Moderator
Messages
3,176
Type of diabetes
I reversed my Type 2
Treatment type
I do not have diabetes
Welcome. I am afraid I do not. Have they told you what type od MODY. Each type needs a different treatment plan so it is important to find out if you are diagnosed.

I will tag @daisy1 who can provide you with some information
 

daisy1

Legend
Messages
26,457
Type of diabetes
Type 2
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Tablets (oral)
Dislikes
Cruelty towards animals.
@hisjen84

Hello and welcome to the forum :) Here is the basic information, not specific to MODY, we give to new members and I hope you will find it useful. Ask more questions when you get your diagnosis and someone will be able to help.

BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you’ll find over 150,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.
There are two approaches to controlling your carbs:

  • Reduce your carbohydrate intake
  • Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

Another option is to replace ‘white carbohydrates’ (such as white bread, white rice, white flour etc) with whole grain varieties. The idea behind having whole grain varieties is that the carbohydrates get broken down slower than the white varieties –and these are said to have a lower glycaemic index.
http://www.diabetes.co.uk/food/diabetes-and-whole-grains.html

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes

LOW CARB PROGRAM:
http://www.diabetes.co.uk/low carb program


Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes
  • Before meals: 4 to 7 mmol/l
  • 2 hours after meals: under 8.5 mmol/l
Blood glucose ranges for type 1 diabetes (adults)
  • Before meals: 4 to 7 mmol/l
  • 2 hours after meals: under 9 mmol/l
Blood glucose ranges for type 1 diabetes (children)
  • Before meals: 4 to 8 mmol/l
  • 2 hours after meals: under 10 mmol/l
However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

  • structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
  • self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to bloodglucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic

Note: This post has been edited from Sue/Ken's post to include up to date information.
 
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hisjen84

Well-Known Member
Messages
73
Type of diabetes
Other
Treatment type
Tablets (oral)
Hi yes they have said Hnf1a. I take gliclazide tablets at the moment, I was also on insulin to begin with as the nurse didn't know how to treat if, but they have since stopped that.
 
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PatsyB

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Messages
2,956
Type of diabetes
Type 2
Treatment type
Insulin
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Diabetes
Hello and welcome to the forum :)
 
C

catherinecherub

Guest
i have been told that due to family history and ruling out type 1 that I have a high chance of mody. Is there anyone else that has had there bloods sent to Exeter, I'm curious as to how long it takes to get the results back.
I'm waiting for an appointment with a specialist but haven't really been given any time frames thanks
Whilst I cannot answer your question about how long the test results take to be confirmed/denied as a MODY it might be a good idea for you to look at the University of Exeter site which is where they give lots of information and even include a MODY probability calculator. This is not foolproof but might be some information that you could discuss with your HCP.
Have you had the C-peptide and GAD tests done to confirm that you are not a Type1?
http://www.diabetesgenes.org/content/mody-probability-calculator
 

hisjen84

Well-Known Member
Messages
73
Type of diabetes
Other
Treatment type
Tablets (oral)
Hi I've had quite a lot of blood taken that is when they sent some to Exeter. The next time I saw the diabetic nurse she said they had ruled out type 1 and said I want type 2!
I have been told now to just wait for my appointment but feel like I need a bit more support. I've managed to get my blood sugar from what was 25 between 4 and 9 but I'm quite lost as what to eat, and it feels like I have to be so careful what to eat and not eat a lot or my blood sugar will go in double figures again.
 

Desbrina

Well-Known Member
Messages
64
Type of diabetes
Other
Treatment type
Insulin
I'm current being tested for it. Had bloods done about 2 weeks ago and told it'll take up to 3 months for the results. There are 5 generations on my family that were confirms diabetic
 

hisjen84

Well-Known Member
Messages
73
Type of diabetes
Other
Treatment type
Tablets (oral)
Thank you, that's good to know! I thought it might take a few months but had no idea! My cousin has mody but was misdiagnosed for a lot of years unfortunately she is quite poorly now. If it wasn't for that I would have been diagnose type one so feel lucky to have been tested for it
 

the_anticarb

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As you'll see from my sig, I think I'm MODY but it can't be confirmed as I didn't pass the gene test (or whatever they do) at Exeter but I was told that could be because my type of MODY is so rare, they havent identified the gene yet.
My mother and brother have diabetes, developed young but definitely not type 1. We are all of normal weight too.
 
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Kaz333666999

Member
Messages
11
Type of diabetes
MODY
Hi, I'm a MODY 3, and new to this forum too. There seems to be loads of good info here on this forum when you start digging around! The phlaunt.com website mentioned above is really good, and the other great thing is that new info is coming out all the time.
 
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mlmac

Member
Messages
14
Type of diabetes
MODY
Treatment type
Insulin
i have been told that due to family history and ruling out type 1 that I have a high chance of mody. Is there anyone else that has had there bloods sent to Exeter, I'm curious as to how long it takes to get the results back.
I'm waiting for an appointment with a specialist but haven't really been given any time frames thanks

Hi there
I was diagnosed with Mody 3 almost 2 years ago. I had been on 4 injections a day for almost 40 years and now only take tablets. I am in Australia but the test was sent to Exeter. My specialist contacted me about 4 weeks after the test. I hope you become one of us as it is a much better prospect. Wishing you well ML
 
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hisjen84

Well-Known Member
Messages
73
Type of diabetes
Other
Treatment type
Tablets (oral)
Hi my cousin was also on injections for 20+ years and is now just on tablets it must make such a difference!
I had my bloods taken at the beginning of March but have heard nothing from the hospital since
 
Messages
18,448
Type of diabetes
Type 1
Treatment type
Insulin
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Bullies, Liars, Trolls and dishonest cruel people
Thank you, that's good to know! I thought it might take a few months but had no idea! My cousin has mody but was misdiagnosed for a lot of years unfortunately she is quite poorly now. If it wasn't for that I would have been diagnose type one so feel lucky to have been tested for it

Hi, I know of a young woman with Mody, her sister too. Their mum was diagnosed with type 1 many years ago, then thought it was type 2, but definitely now Mody. so all three females have it.
http://www.phlaunt.com/diabetes/14047009.php
 

himtoo

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Retired Moderator
Messages
4,805
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Pump
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why can't everyone get on........
just sending a hug to you @hisjen84 :)

all the best !!
 

mlmac

Member
Messages
14
Type of diabetes
MODY
Treatment type
Insulin
Hi my cousin was also on injections for 20+ years and is now just on tablets it must make such a difference!

I had my bloods taken at the beginning of March but have heard nothing from the hospital since


Hopefully you have heard something by now, if not ask! Don't sit back as you have to take the lead - this is your life and you have to learn how to manage whatever the diagnosis is - welcome Sister!
 
Messages
21
Type of diabetes
MODY
Treatment type
Other
Hi there
I was diagnosed with Mody 3 almost 2 years ago. I had been on 4 injections a day for almost 40 years and now only take tablets. I am in Australia but the test was sent to Exeter. My specialist contacted me about 4 weeks after the test. I hope you become one of us as it is a much better prospect. Wishing you well ML

I also have a recent MODY3 (HNF1A-diabetic) diagnosis at age 40. Managing without meds at the moment. I wonder how many of us are on this forum?
 

mlmac

Member
Messages
14
Type of diabetes
MODY
Treatment type
Insulin
I agree, I would love to connect with other Mody3's they are supposed to be only 1% of those diagnosed but I have read they are becoming more frequently diagnosed as the cost of the genetic tests was prohibitive - the more who do it the cheaper it becomes! Hope you are travelling ok with your treatment - all good for me, I am still only on tabs after 2 years 3 months and a couple of days off injections that I had been on for almost 40 years ML
 
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Messages
21
Type of diabetes
MODY
Treatment type
Other
I agree, I would love to connect with other Mody3's they are supposed to be only 1% of those diagnosed but I have read they are becoming more frequently diagnosed as the cost of the genetic tests was prohibitive - the more who do it the cheaper it becomes! Hope you are travelling ok with your treatment - all good for me, I am still only on tabs after 2 years 3 months and a couple of days off injections that I had been on for almost 40 years ML

That is wonderful that you could make the switch to tabs after so many years of injections! I have wondered if my aunt could do the same, but according to her endocrinologist, she doesn't have any insulin producing capacity remaining. Given that he had not communicated to my aunt the importance of having her diabetic sibling (my dad) screened for MODY (and in the process alerting myself and my siblings to be screened), I wonder if she is getting the best treatment. I'm perhaps too curious, but I would be very interested to hear how your diabetes was first discovered and what kinds of blood sugar levels you had when you were in your late teens/early 20s? For myself, I'm sure I've had post-prandial peeks for decades but only became aware of it last year. Apart from drowsiness after meals, I didn't have any major symptoms and only sought to be screened once I learned that there was MODY in the family.