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Mody
- Thread starter hisjen84
- Start Date
Liam1955
Master
- Messages
- 10,964
- Location
- York, England, UK.
- Type of diabetes
- Type 2
- Treatment type
- Insulin
- Dislikes
- Anti-Gay People, Self Centre People, Two Faced People and Bad Language.
kesun
Well-Known Member
- Messages
- 381
- Type of diabetes
- Other
- Treatment type
- Diet only
Hi @hisjen84 and welcome,
MODY is a fairly rare form of diabetes. People with MODY do not produce enough insulin, compared to Type 2 diabetes who are resistant to the insulin they make, and compared to Type 1 where virtually all insulin-making capacity is lost in one go. MODY also tends to be strongly hereditary. The other thing to know about MODY is that there are various types, all of them different and requiring different treatments. If by any chance you have a more specific diagnosis (i.e. MODY 1, 2, 3 or 5 - I've no idea what happened to MODY 4!) then I can give you some more specific advice. There are important distinctions - for example, MODY 2 is mild and non-progressive while MODY 5 tends to bring kidney problems. However, you're seeing a specialist, who will be able to order tests and explain the results, which is the main thing.
Having said all that, in my opinion the best thing you can do, regardless of diagnosis, is to cut down straight away on carbohydrates. I'm tagging @daisy1 to put up her standard advice for newly-diagnosed diabetics, which applies off-beat diabetics like us just as much as to the mainstream types
Finally, although I've been tested for all the MODY types and still classify myself as such, I actually have the even weirder mitochondrial diabetes (i.e. it's in my RNA instead of my DNA). But everyone was so sure I was MODY that I have loads of information about it, so feel free to ask.
Kate
MODY is a fairly rare form of diabetes. People with MODY do not produce enough insulin, compared to Type 2 diabetes who are resistant to the insulin they make, and compared to Type 1 where virtually all insulin-making capacity is lost in one go. MODY also tends to be strongly hereditary. The other thing to know about MODY is that there are various types, all of them different and requiring different treatments. If by any chance you have a more specific diagnosis (i.e. MODY 1, 2, 3 or 5 - I've no idea what happened to MODY 4!) then I can give you some more specific advice. There are important distinctions - for example, MODY 2 is mild and non-progressive while MODY 5 tends to bring kidney problems. However, you're seeing a specialist, who will be able to order tests and explain the results, which is the main thing.
Having said all that, in my opinion the best thing you can do, regardless of diagnosis, is to cut down straight away on carbohydrates. I'm tagging @daisy1 to put up her standard advice for newly-diagnosed diabetics, which applies off-beat diabetics like us just as much as to the mainstream types
Finally, although I've been tested for all the MODY types and still classify myself as such, I actually have the even weirder mitochondrial diabetes (i.e. it's in my RNA instead of my DNA). But everyone was so sure I was MODY that I have loads of information about it, so feel free to ask.
Kate
hisjen84
Well-Known Member
- Messages
- 73
- Type of diabetes
- Other
- Treatment type
- Tablets (oral)
Thanks for all the replies. I have had some bloods sent to Exeter and I'm just waiting for the results. They suspect hnf1a alpha which my cousin also has.
It did come as a shock, when diagnosed my blood sugar was 25 and my hba1c was 15%. I have been given gliclazide and insulin however I have had to stop the insulin as my blood sugar dropped to 3.6
It has shocked me how much diabetes effects you. My eyesight has changed already and will need a new prescription
It did come as a shock, when diagnosed my blood sugar was 25 and my hba1c was 15%. I have been given gliclazide and insulin however I have had to stop the insulin as my blood sugar dropped to 3.6
It has shocked me how much diabetes effects you. My eyesight has changed already and will need a new prescription
daisy1
Legend
- Messages
- 26,457
- Location
- Switzerland
- Type of diabetes
- Type 2
- Treatment type
- Tablets (oral)
- Dislikes
- Cruelty towards animals.
@hisjen84
Hello and welcome to the forum
Here is the information we give to new members and I hope you will find it useful. Ask as many questions as you like and someone will be able to help.
BASIC INFORMATION FOR NEW MEMBERS
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 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
Access to blood glucose test strips
The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:
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.
Hello and welcome to the forum
Here is the information we give to new members and I hope you will find it useful. Ask as many questions as you like and someone will be able to help.BASIC INFORMATION FOR NEW MEMBERS
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
- Before meals: 4 to 7 mmol/l
- 2 hours after meals: under 9 mmol/l
- Before meals: 4 to 8 mmol/l
- 2 hours after meals: under 10 mmol/l
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.
desidiabulum
Well-Known Member
- Messages
- 706
Hi and welcome to the MODY club! It's just possible that in the end Exeter won't have a clear identification of MODY type. If so, don't let it bother you. The key, as kesun says, is to just do whatever works to get your BGs down, and reducing carbs will definitely help with that.
phoenix
Expert
- Messages
- 5,671
- Type of diabetes
- Type 1
- Treatment type
- Pump
It depends on how much you want to find out about MODY (especially if you aren't certain yet) Some people don't want to know more than necessary and some like me want to find out as much as possible
If you want to know more and haven't seen the Exeter site then you might like to look up about HNF1A.http://www.diabetesgenes.org/content/hepatic-nuclear-factor-1-alpha-hnf1a
At the moment there is also an online course run by Exeter
(no assessment and doesn't take anything like the 4 hours a week suggested) link to it on this page http://www.diabetesgenes.org/ It's generally about genetics and diabetes but of course there is a big emphasis on those caused by a specific genetic variation.
It's a bit of a mixture with a little bit of 'scientific' stuff (how glic works for example) but also a lot more general info.
(there are a couple of videos, about a young man that had been diagnosed as T1 but was having huge difficulties with insulin and hypos. He had a relative with HNF1A, but his care team didn't see the point of testing. His parents pushed for it and he was positive Now, because his condition is treated properly, it's made a huge difference; He went from not being able to cope with A levels and having to give up his driving lessons, to getting to Vet College . He qualified and spends his days 'wrestling cows ' as well as taking part strenuous sports like mountain biking and paragliding.
If you want to know more and haven't seen the Exeter site then you might like to look up about HNF1A.http://www.diabetesgenes.org/content/hepatic-nuclear-factor-1-alpha-hnf1a
At the moment there is also an online course run by Exeter
(no assessment and doesn't take anything like the 4 hours a week suggested) link to it on this page http://www.diabetesgenes.org/ It's generally about genetics and diabetes but of course there is a big emphasis on those caused by a specific genetic variation.
It's a bit of a mixture with a little bit of 'scientific' stuff (how glic works for example) but also a lot more general info.
(there are a couple of videos, about a young man that had been diagnosed as T1 but was having huge difficulties with insulin and hypos. He had a relative with HNF1A, but his care team didn't see the point of testing. His parents pushed for it and he was positive Now, because his condition is treated properly, it's made a huge difference; He went from not being able to cope with A levels and having to give up his driving lessons, to getting to Vet College . He qualified and spends his days 'wrestling cows ' as well as taking part strenuous sports like mountain biking and paragliding.
desidiabulum
Well-Known Member
- Messages
- 706
On the bright side.... I was given a full insulin kit and instructions for use when I was first diagnosed with MODY, and 6 years later I've never needed it. My eyesight stabilized too. Good luck!
