Newly Diagnosed with MODY

[neil697]

Hi,
Happy new year to everyone.
I had a nice little Christmas gift this year, after having 'the usual' symptoms for three weeks I was diagnosed with MODY on the 28th Dec. :shock:

I know very little about Diabetes full stop, let alone MODY, and it's all come as a bit of a shock.

I've always considered myself to be 'reasonably' fit and healthy, I don’t binge eat anything, I eat well (nothing processed, all fresh), plenty of fruit and veg.

From what I've read on the net, MODY is a genetic form of diabetes, so I know it's probably not my lifestyle that had lead to it.

My blood sugar currently fluctuates throughout the day from 4.9-18.5mmol, although I feel really bad when it's low.

Since being told, I have cut pretty much all sugar and bad carbs from my diet, I don't really think that this will be a problem in the long term as it doesn't really differ that much from my 'normal' diet.

I just wondered whether anyone can give me some firsthand info about it, as I think I've over read all sorts of info (more than likely rubbish) on the net.

Thank you in advance,
Neil.

 

[Daibell]

Hi. There is a small amount on this website; see this link:

http://www.diabetes.co.uk/diabetes_mody.html

You may also find some good info on the www.diabetes.org.uk site?

Sorry I can't give you any more info myself.

 

[twinkle1980]

Hiya, sorry i cant offer any help but as a fellow Christmas newbie i wanted to welcome you. I'm32 and was diagnosed type 1 on Christmas eve. The people here are fantastic and offer a lot of support and advice,so please stick around xx

 

[desidiabulum]

Hi and welcome to MODY-world. I had it diagnosed 2 years ago aged 47 -- like you, I'm slim, fit, healthy, but there is T1 in the family. Have they identified the rogue gene yet? There is still a lot of basic research needing to be done on MODY. In practical terms, though, it's just a matter of keeping BGs as low as you can to try to slow progression to insulin use. I was told I'd inevitably be on insulin after a while, and was given insulin kit to prepare for my pancreas giving up, but am still doing fine on 100mg gliclazide a day and have thrown away my insulin kit for the time being. Some MODY are very sensitive to sulfonylureas (gliclazide or glipizide) initially, so you may need to watch out for hypos. Another problem that some MODY sufferers find (and certainly I do) is that their sugars do fluctuate in a rather erratic fashion at times, certainly more than T2 -- it's not always easy to predict. The main bother I've found has been hypos -- i had a lot of these in my first year and a half but have now got these mostly under control. Do make sure that you have a hypo kit with you at all times (I find that jelly babies work best for me). Good luck!

 

[neil697]

Hi,
Thank you for your kind welcomes....
I haven't really been told a lot yet! I have my second appointment to see my GP tomorrow, luckily my GP happens to be the medical group's diabetes doctor. He did say that they'll have to have a gene test carried out to determine which gene is causing the problem.
I've totally cut all sugar and nearly all carbs from my diet as well as sticking to low GI foods. But when I first went to the doctor my bg was 28, he gave me a meter and prescribed me 80mg Gliclazide twice a day. My bg in the mornings is around 15-10, which generally creeps up throughout the day, but has dipped suddenly late afternoon to around 4-5 (which is when I feel really bad, v sleepy, grumpy & shaky). I'm concerned that I will end up on insulin, I know its early days and I have to learn what food works best for me, but I so hope it can be controlled through oral meds. I can't help but feel that my bg is very erratic and an average would be around 12-13, which is still high, isn’t it? As I understand it I should be aiming for 4-7 throughout the day.

BTW I'm 33, 6'1" and around 88kgs. There is no history at all in my family.

 

[desidiabulum]

Hi,
Thank you for your kind welcomes....
I haven't really been told a lot yet! I have my second appointment to see my GP tomorrow, luckily my GP happens to be the medical group's diabetes doctor. He did say that they'll have to have a gene test carried out to determine which gene is causing the problem.
I've totally cut all sugar and nearly all carbs from my diet as well as sticking to low GI foods. But when I first went to the doctor my bg was 28, he gave me a meter and prescribed me 80mg Gliclazide twice a day. My bg in the mornings is around 15-10, which generally creeps up throughout the day, but has dipped suddenly late afternoon to around 4-5 (which is when I feel really bad, v sleepy, grumpy & shaky). I'm concerned that I will end up on insulin, I know its early days and I have to learn what food works best for me, but I so hope it can be controlled through oral meds. I can't help but feel that my bg is very erratic and an average would be around 12-13, which is still high, isn’t it? As I understand it I should be aiming for 4-7 throughout the day.

BTW I'm 33, 6'1" and around 88kgs. There is no history at all in my family.

Those average levels are rather high. You don't want to be above 8.5 2 hours after meals, and certainly your fasting level shouldn't be over 7.5 max, ideally. With any luck they will gradually come down as your diet changes. You mentioned having lots of fruit and veg - this is one of the areas where you may need to rethink what a 'healthy' diet is. Tropical fruit, bananas, fruit juice etc are really bad news -- you need to restrict yourself to berries and other low-GI fruit.
On gliclazide, my DSN encouraged me to juggle amounts and timing as I was getting the same sort of pattern that you describe. I now take 80mg before evening meal and just 20mg before breakfast, and this has resolved both the morning spikes and afternoon lows. Everyone is different, but some tinkering with amounts and timing may help.
88kg probably pushes you just outside the BMI recommended limits, so it might be an idea to lose a bit of weight
Good luck, and do let us know how you get on.

 

[Mummy2girls]

Hello. I've just been diagnosed with type 2 diabetes but they think it could be mody so the GP is referring me for genetic testing. How did they know you had Mody? Did they do genetic tests or is there another way of getting a diagnosis? Thanks

 

[phoenix]

Hi,
This may be helpful. It gives the technical info on MODY
http://www.diabetesgenes.org/content/ma ... nosis-mody.

Also
http://www.phlaunt.com/diabetes/14047009.php
(written by a person with MODY)

 

[Mummy2girls]

Thank you Phoenix

 

[Yorksman]

Just to underscore the point about not making any assumptions about fruits, I was very surprised to learn that watermelons have about three times the glycemic index of cherries. Just goes to show that you can't take anything forgranted. There are plenty of lists with glycemic index of fruits and fruit juices on the web.

 

[desidiabulum]

Just to underscore the point about not making any assumptions about fruits, I was very surprised to learn that watermelons have about three times the glycemic index of cherries. Just goes to show that you can't take anything forgranted. There are plenty of lists with glycemic index of fruits and fruit juices on the web.

Yes, but you need to look at the glycemic LOAD. Watermelon has a high GI, but a typical serving of watermelon does not contain much carbohydrate, so the glycemic effect of eating it (and therefore its GL) is low. Good news if you like melon; bad news is you want things to be straightforward!

 

[Mummy2girls]

Just to underscore the point about not making any assumptions about fruits, I was very surprised to learn that watermelons have about three times the glycemic index of cherries. Just goes to show that you can't take anything forgranted. There are plenty of lists with glycemic index of fruits and fruit juices on the web.

Yes, but you need to look at the glycemic LOAD. Watermelon has a high GI, but a typical serving of watermelon does not contain much carbohydrate, so the glycemic effect of eating it (and therefore its GL) is low. Good news if you like melon; bad news is you want things to be straightforward!

How do you work out the GL? Sorry I'm new to all this!

 

[Yorksman]

Good news if you like melon; bad news is you want things to be straightforward!

LOL, yes. That's something we all have to get used to.

 

[desidiabulum]

Just to underscore the point about not making any assumptions about fruits, I was very surprised to learn that watermelons have about three times the glycemic index of cherries. Just goes to show that you can't take anything forgranted. There are plenty of lists with glycemic index of fruits and fruit juices on the web.

Yes, but you need to look at the glycemic LOAD. Watermelon has a high GI, but a typical serving of watermelon does not contain much carbohydrate, so the glycemic effect of eating it (and therefore its GL) is low. Good news if you like melon; bad news is you want things to be straightforward!

How do you work out the GL? Sorry I'm new to all this!

Hi -- Glycemic load of a serving of food can be calculated as its carbohydrate content measured in grams (g), multiplied by the food's GI, and divided by 100. For example, watermelon has a GI of 72. A 100-g serving of watermelon has 5 g of available carbohydrates (it contains a lot of water), making the calculation 5·72/100=3.6, so the GL is 3.6. A food with a GI of 100 and 10 g of available carbohydrates has a GL of 10 (10·100/100=10), while a food with 100 g of carbohydrate and a GI of just 10 also has a GL of 10 (100·10/100=10).
If you google 'glycemic load' you should be able to find some GL tables.
Be warned -- if you mention glycemic load to your diabetes nurse they may give you a patronising smile and say 'no -- you mean glycemic index' (as mine did). If they do this, just make a mental note to do more of your own research from now on!

 

[Mummy2girls]

Thank you!

 

[neil697]

Hello. I've just been diagnosed with type 2 diabetes but they think it could be mody so the GP is referring me for genetic testing. How did they know you had Mody? Did they do genetic tests or is there another way of getting a diagnosis? Thanks

Hi Mummy2girls,
To be honest, I can't really remember why my Doctor said that he was sure it was MODY...I think I was in a state of shock!
The last time I went to see him, I asked again 'are you sure that I have MODY?' his response was 'Yes, I'm certain'.
BTW, my GP is the practice diabetes Doctor and he really seems to know what he's talking about and also genuinely interested.

He did say that he was going to email the consultant at the local hospital to ask if he should send me genetic testing. I haven't heard anything back; I assume that they are reluctant as I understand that the testing is rather expensive.

A bit off subject:
Over the last week or so, I have noticed that my BG is fluctuating quite a bit, i.e. yesterday 7.50 - 8.7, 19:00 - 5.5, 23:00 - 14.5 and then today at 7:30 - 6.5. I was quite active last night, I ate my dinner at 18:00 (no carbs), I'm at a loss as to why the fluctuation from 5.5 to 14.5 and then back to 6.5 in the morning. I am being a good boy too! I am determined to get my levels inside the accepted bracket. I don’t know whether I’m expecting a little too much too soon.
I don't know whether I should be worried or if it’s normal. I don’t really want to bother the Doctor as I'm sure they have much more important things to deal with.

Any comments would be appreciated.

 

[Yorksman]

I have noticed that my BG is fluctuating quite a bit, i.e. yesterday 7.50 - 8.7, 19:00 - 5.5, 23:00 - 14.5 and then today at 7:30 - 6.5. I was quite active last night, I ate my dinner at 18:00 (no carbs), I'm at a loss as to why the fluctuation from 5.5 to 14.5 and then back to 6.5 in the morning.

I have had a couple of these 'funnies' over the weeks. The last time I went up from 5.7 to 9.9 two hours after a meal which, the previous day had caused only a minor increase. My wife works in the haematology lab at the hospital and tells me that they get outliers several times a day. They simply re do the test. So ten mins later I decided to do it again and the reading was 5.9. So I thought lets try another finger, 5.6. The next morning I was 5.3. Either I did something wrong in testing or I had a sugar lump floating around like an iceberg in my system.

I also had a 4.1 once, at a time when I was mostly in the 6s and 7s. I've never seen anything below 5.3 since. It's just an outlier in the other direction.

 

[desidiabulum]

Hi. An initial diagnosis of MODY may be made by a GP or clinic if there is one or more of the following features: a strong family history of diabetes (of any type), onset of diabetes in the second to fifth decade, insulin independence (although insulin may be needed for optimal control), absence of features of insulin resistance, and absence of β cell autoimmunity. The specific genetic subtype of MODY determines the clinical presentation, prognosis, and treatment response. GCK-MODY is the one with least problems. If you have HNF1A-MODY then there tends to be much higher senstivity in reactions to sulfonylureas like gliclazide, and more generally your BGs may be more erratic. You may find (like me) that after genetic testing they still can't find a specific malfunctioning gene (there are at least ten identified so far), in which case they slap you with a label 'MODY X', meaning they don't know.
The more I looked into MODY the more confused the diagnostic situation seemed to be -- I think it is a work in progress, frankly. It's best, like most diabetics, just to monitor your BGs very carefully and adjust diet, medication and dosage accordingly. It's taken a couple of years for my system to stabilize, and I still have the occasional run of erratic BG numbers. If numbers keep running high regardless of lowcarb diet and exercise then do get in quick contact with your GP.

 

[neil697]

Hi all,
Really confused now.....
I had a appointment to see my GP last Friday which was cancelled, they then rebooked the appointment with the Diabetic Nurse for Monday morning.

She was really good and to be honest, seemed a lot more knowledgeable than the doc! She was really quite pleased with how I'm controlling my numbers, and didn't feel the need to talk about diet with me.
The main thing I wanted to discuss with someone was the fact that I'm concerned about the implications to my two children, and IF indeed it is MODY, I would really like to know for obvious reasons.
Her response was that she really can't see that I have MODY, because of the lack of any family history what so ever...fair enough. She then went on to say that it could just be 'run of the mill' T2, which she said would be a bit unusual, as I'm slim and active and lead a fairly heathy lifestyle.
She was also surprised to see in my notes that my GP had not emailed the consultant (as he said he was going to do) to ask whether any further testing should be carried out. Her opinion was that i should have been referred to secondary care for further investigation. So she has made an appointment for me to see another nurse who visits the surgery once a month, to see whether a GAD test should be carried out as she suspects that I could have LADA.

Has anyone else had this type of experience??

Since coming off Gliclazide and onto Metformin, I've had pretty good control of my BG readings, fasting is about 8 on average. And I've had a lot less hypos since coming off Glic. Apparently I had very few ketones, but did have a HbA1C of 11.6.
To be honest, I think I've been reading a little too much about LADA, and have managed to worry myself about it, as the thought of eventually being put on insulin fills me with dread.
I think I just need to forget about it all until actually know rather than reading too much and worrying myself!!

 

[Lady P]

Hi and welcome to MODY-world. I had it diagnosed 2 years ago aged 47 -- like you, I'm slim, fit, healthy, but there is T1 in the family. Have they identified the rogue gene yet? There is still a lot of basic research needing to be done on MODY. In practical terms, though, it's just a matter of keeping BGs as low as you can to try to slow progression to insulin use. I was told I'd inevitably be on insulin after a while, and was given insulin kit to prepare for my pancreas giving up, but am still doing fine on 100mg gliclazide a day and have thrown away my insulin kit for the time being. Some MODY are very sensitive to sulfonylureas (gliclazide or glipizide) initially, so you may need to watch out for hypos. Another problem that some MODY sufferers find (and certainly I do) is that their sugars do fluctuate in a rather erratic fashion at times, certainly more than T2 -- it's not always easy to predict. The main bother I've found has been hypos -- i had a lot of these in my first year and a half but have now got these mostly under control. Do make sure that you have a hypo kit with you at all times (I find that jelly babies work best for me). Good luck!

which Mody are you?

Im Mody 2 - Glucokinase