Newly Diagnosed with MODY
- Thread starter neil697
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elaine77
Well-Known Member
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- 561
HI Neil! I know how u feel! I was diagnosed the week before Christmas, initially as type 2 (age 26 with a BMI of 22.5???) and put onto gliclazide. I was on it for two weeks and couldn't get my levels below 9 no matter what I did! I rang my GP and demanded to be put on Metformin and I now take 2 tablets of Metformin a day, only 500mg and my levels are usually always between 4 and 7 (apart from my fasting levels which really frustrate me as they are always above 7!)
Interestingly, when my blood results came back they have kind of diagnosed me with type 1.5 or LADA as some call it because I tested positive for GAD65 antibodies though they are perplexed at how such a low dose of Metformin is working so well and so I am in limbo for the next 3 months until they test my blood gain to basically see how many more of my beta cells have been destroyed.
I have no family history of diabetes at all and have made changes in my diet but not massively. The consultant has basically said it is inevitable that I will eventually need insulin but, that being said, if you read around the forum u will see people who have had this for over 30 years and have still managed to keep the need for insulin away and I've even heard of people who have been put on insulin and actually ended up coming off it eventually with drastic diet and fitness changes!
I think the truth is that the medical profession are largely baffled by this disease and each individual is like a fingerprint! No two are the same! You should ask your GP to do a c-peptide test and an antibody test too if he hasn't already and the should (though it didn't really with me) make the picture a little clearer!
Welcome to the forum
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Interestingly, when my blood results came back they have kind of diagnosed me with type 1.5 or LADA as some call it because I tested positive for GAD65 antibodies though they are perplexed at how such a low dose of Metformin is working so well and so I am in limbo for the next 3 months until they test my blood gain to basically see how many more of my beta cells have been destroyed.
I have no family history of diabetes at all and have made changes in my diet but not massively. The consultant has basically said it is inevitable that I will eventually need insulin but, that being said, if you read around the forum u will see people who have had this for over 30 years and have still managed to keep the need for insulin away and I've even heard of people who have been put on insulin and actually ended up coming off it eventually with drastic diet and fitness changes!
I think the truth is that the medical profession are largely baffled by this disease and each individual is like a fingerprint! No two are the same! You should ask your GP to do a c-peptide test and an antibody test too if he hasn't already and the should (though it didn't really with me) make the picture a little clearer!
Welcome to the forum
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Hi all! (new to this forum)
I've had my diagnosis confirmed today of mody (subtype hnf4a) after being treated with insulin for the last 9 years. My consultant always suspected mody but as the tests are so expensive they put it off until absolutely necessary and was treated as type 1.
Should find out more in my next appointment in April regarding changes in treatment etc. but I suspect I'll probably be carrying on with the insulin, although I'm only taking a tiny amount atm. BG levels are very erratic with huge swings unexpectedly. Glad I've finally had the confirmation though. I'm very interested to read about other people's experiences with this.
I've had my diagnosis confirmed today of mody (subtype hnf4a) after being treated with insulin for the last 9 years. My consultant always suspected mody but as the tests are so expensive they put it off until absolutely necessary and was treated as type 1.
Should find out more in my next appointment in April regarding changes in treatment etc. but I suspect I'll probably be carrying on with the insulin, although I'm only taking a tiny amount atm. BG levels are very erratic with huge swings unexpectedly. Glad I've finally had the confirmation though. I'm very interested to read about other people's experiences with this.
Hi shazll
I was diagnosed with hnf1alpha subvariant after 5 years of being a diabetic that was 5 years ago.
I chose to stay on insulin as it best suited my needs and like you was only on small doses for the first few years eg 6 units 4 times a day, over the last few years my body has started becoming slightly resistant to the insulin and i have had to increase to higher doses eg 22 units.
My form of mody is pretty much like other forms although i don't have ketones.
Hope this helps, and as i said it was my choice of treatment the hospital do take your choice into consideration
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I was diagnosed with hnf1alpha subvariant after 5 years of being a diabetic that was 5 years ago.
I chose to stay on insulin as it best suited my needs and like you was only on small doses for the first few years eg 6 units 4 times a day, over the last few years my body has started becoming slightly resistant to the insulin and i have had to increase to higher doses eg 22 units.
My form of mody is pretty much like other forms although i don't have ketones.
Hope this helps, and as i said it was my choice of treatment the hospital do take your choice into consideration
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Neil,
My story and numbers are fairly similar to your own. I was also worried about Insulin. Before switching I got assurances that I could switch back if I didn't like it. Since making the switch I have been a lot happier and my BG is better, much better than when taking loads of Metformin, Glicazide etc. It took me about 6 months to get the hang of working out correct doses. I make some mistakesroblem: but not a lot when things are "normal". However ...
Shazll
Stress and illness make my BS go haywire. Last time I went on holiday, I took a reading on the plane. It was off the chart ! Similarly I had a job interview recently which knocked me about quite badly both that day and day after.
Best wishes
My story and numbers are fairly similar to your own. I was also worried about Insulin. Before switching I got assurances that I could switch back if I didn't like it. Since making the switch I have been a lot happier and my BG is better, much better than when taking loads of Metformin, Glicazide etc. It took me about 6 months to get the hang of working out correct doses. I make some mistakes
roblem: but not a lot when things are "normal". However ... Shazll
Stress and illness make my BS go haywire. Last time I went on holiday, I took a reading on the plane. It was off the chart ! Similarly I had a job interview recently which knocked me about quite badly both that day and day after.
Best wishes
carnabychick
Well-Known Member
- Messages
- 104
- Type of diabetes
- Treatment type
- Insulin
Hi how easy or hard is it to ask to be tested for Mody.
Reason i ask is because i was diagnosed as type 2 a few years ago when i was 41, but in hindsight i had had symptoms for a long while, ie for at least 10 years before diagnosis i had suffered from extreme tiredness, unexplained boils/cysts etc, i had also had what i now know to be hypos occasionally.
Even after diagnosis i suffered from either highs of 14 to lows of 3.5 whilst i was on gliclazide and metformin but since i have started victoza i have had fairly level bg's for the first time!!
I had thought Mody was a young version of type 2 so had never read anything about it till i came across some threads on here and it got me wondering as many of the symptoms seemed to fit in with what had happened with me. My doctor did say he thought i could have been diabetic for least 6-10 years before i got diagnosed but hes never mentioned Mody and wondering now if i should ask him???
thx
Shirl
Reason i ask is because i was diagnosed as type 2 a few years ago when i was 41, but in hindsight i had had symptoms for a long while, ie for at least 10 years before diagnosis i had suffered from extreme tiredness, unexplained boils/cysts etc, i had also had what i now know to be hypos occasionally.
Even after diagnosis i suffered from either highs of 14 to lows of 3.5 whilst i was on gliclazide and metformin but since i have started victoza i have had fairly level bg's for the first time!!
I had thought Mody was a young version of type 2 so had never read anything about it till i came across some threads on here and it got me wondering as many of the symptoms seemed to fit in with what had happened with me. My doctor did say he thought i could have been diabetic for least 6-10 years before i got diagnosed but hes never mentioned Mody and wondering now if i should ask him???
thx
Shirl
Hi elaine77,
I’m now (STILL) waiting to get the results of the c-peptide and antibody tests. I'll be really interested what they say, I just hope they don't come back as inconclusive!!
As you've been diagnosed with LADA, did/do you find that you have 3-4 days of good numbers i.e. 7-8 morning and 4-6 before evening meal, then for the next 2-3 days of really quite bad numbers?? For instance, on Sunday I tested first thing in the morning and read 15.5 (quite a shock), then eat breakfast and lunch as normal, then had a Hypo about 3:00 then tested at 5:00 and was back up to 11.5!!
The inconsistency seems to be getting worse not better, even though my diet and activity levels are very much constant.
I'm back on Gliclazide again now, only 40mg which I really don’t think is enough to keep my readings down to an acceptable level throughout the day. But, I don't want to double up on the dosage (as my nurse suggested) through fear of having Hypo's.
Also, how long did your test results take to come back? I've been told in can take up to 6 weeks!
I’m now (STILL) waiting to get the results of the c-peptide and antibody tests. I'll be really interested what they say, I just hope they don't come back as inconclusive!!
As you've been diagnosed with LADA, did/do you find that you have 3-4 days of good numbers i.e. 7-8 morning and 4-6 before evening meal, then for the next 2-3 days of really quite bad numbers?? For instance, on Sunday I tested first thing in the morning and read 15.5 (quite a shock), then eat breakfast and lunch as normal, then had a Hypo about 3:00 then tested at 5:00 and was back up to 11.5!!
The inconsistency seems to be getting worse not better, even though my diet and activity levels are very much constant.
I'm back on Gliclazide again now, only 40mg which I really don’t think is enough to keep my readings down to an acceptable level throughout the day. But, I don't want to double up on the dosage (as my nurse suggested) through fear of having Hypo's.
Also, how long did your test results take to come back? I've been told in can take up to 6 weeks!
elaine77
Well-Known Member
- Messages
- 561
I didn't get an appointment for 2 months! The bloods r back within hours, it's the availability of the doctors and the appointments that's not there unfortunately...
Be careful with Gliclazide it's not a good drug it completely wrecks ur pancreas and if it isn't helping you control ur levels I would ask to change it as it puts massive pressure on ur pancreas and can sometimes wear ur beta cells out to exhaustion pretty quick. This obviously depends on the type of diabetes you have, for LADA it's just no good because no matter how much pressure the meds put on ur pancreas, if the cells r not there they're not there and it will just exhaust the ones u have left quicker!
My morning levels are the only ones I just can't control....they have been below 7 about twice in 3 months and over 7 every other time! My post meal levels have been quite good but they have started to be a bit unpredictable as I had a really bad cold and was run down so they went upto 8-9 mmol which is high for me... At the minute the highest I get post meal is about 8.2 which I get upset about as I am usually between 6 and 7 mmol 2 hours after eating. Chips don't agree with me, I end up on 11 mmol after chips so I never really eat them anymore, however, on Good Friday I went for fish and chips (as u do!), i pulled all the batter off the fish and put loads of vinegar on the chips and 2 hours later I was at 7.4 mmol which was brill considering...vinegars a godsend!
Mine are getting more unpredictable depending on what I eat and one thing I cant get my head around at the moment is that....I wake up on a high BG so I take my Metformin and have some breakfast to bring the level down....I usually have Cheerios or Weetabix as they are more whole grain but two hours later I'm almost on a hypo at 4.1 nd start to feel ill! Metformin doesn't cause hypos so I'm a bit confused over this at the moment but the best thing I would say to do it to try diff foods and test regularly to see how they're effecting ur levels! For me, I haven't cut out carbs dramatically, I've changed all my carbs to low GI and have really small portions...I find this better for me right now but some people just cut them out almost completely, I don't think I could do that!
With regards to the 'inconclusive' it really is annoying but with me, because My insulin production was in the normal range but right at the bottom and because I only had one antibody type and because the Metformin was working there wasn't anything they could say or do, it was my body not the doctors unfortunately lol! And so I basically just have to wait til June to see how many more beta cells have been murdered :-(
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Be careful with Gliclazide it's not a good drug it completely wrecks ur pancreas and if it isn't helping you control ur levels I would ask to change it as it puts massive pressure on ur pancreas and can sometimes wear ur beta cells out to exhaustion pretty quick. This obviously depends on the type of diabetes you have, for LADA it's just no good because no matter how much pressure the meds put on ur pancreas, if the cells r not there they're not there and it will just exhaust the ones u have left quicker!
My morning levels are the only ones I just can't control....they have been below 7 about twice in 3 months and over 7 every other time! My post meal levels have been quite good but they have started to be a bit unpredictable as I had a really bad cold and was run down so they went upto 8-9 mmol which is high for me... At the minute the highest I get post meal is about 8.2 which I get upset about as I am usually between 6 and 7 mmol 2 hours after eating. Chips don't agree with me, I end up on 11 mmol after chips so I never really eat them anymore, however, on Good Friday I went for fish and chips (as u do!), i pulled all the batter off the fish and put loads of vinegar on the chips and 2 hours later I was at 7.4 mmol which was brill considering...vinegars a godsend!
Mine are getting more unpredictable depending on what I eat and one thing I cant get my head around at the moment is that....I wake up on a high BG so I take my Metformin and have some breakfast to bring the level down....I usually have Cheerios or Weetabix as they are more whole grain but two hours later I'm almost on a hypo at 4.1 nd start to feel ill! Metformin doesn't cause hypos so I'm a bit confused over this at the moment but the best thing I would say to do it to try diff foods and test regularly to see how they're effecting ur levels! For me, I haven't cut out carbs dramatically, I've changed all my carbs to low GI and have really small portions...I find this better for me right now but some people just cut them out almost completely, I don't think I could do that!
With regards to the 'inconclusive' it really is annoying but with me, because My insulin production was in the normal range but right at the bottom and because I only had one antibody type and because the Metformin was working there wasn't anything they could say or do, it was my body not the doctors unfortunately lol! And so I basically just have to wait til June to see how many more beta cells have been murdered :-(
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