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Mody???

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V

Vinta

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OK I'm not really new to diabetes I've been left diabetic after pregnancy and now 9 months later it's back I'm not type 1? So as I'm not overweight and eat reasonably well I'm being tested for mody??

Problem being my body is not responding to tablets but I'm very sensitive to insulin and taking hypos and only 1 or 2 units of Novo rapid??

Any suggestions would be great??

Thanks
 
Hi,

How soon after you've taken novo rapid do you eat? It may simply be that it kicks in before you get the chance to get and food into you to counteract it.

It may be worth asking your doctor if you can be put on a slower release insulin so you don't have to worry about eating so quickly after you take it.
 
Hi Vinta, welcome. It might be worth getting a half unit pen
Also I have heard somewhere that diluted insulin is available, but I don't know how true that is.
 
Last edited:
Sounds familiar
Vinta said:
OK I'm not really new to diabetes I've been left diabetic after pregnancy and now 9 months later it's back I'm not type 1? So as I'm not overweight and eat reasonably well I'm being tested for mody??

Problem being my body is not responding to tablets but I'm very sensitive to insulin and taking hypos and only 1 or 2 units of Novo rapid??

Any suggestions would be great??

Thanks
Click to expand...
 
Hi Vinta
Sorry to hear you're having to deal with diabetes so soon after pregnancy, not the nicest way to welcome a new addition I'm sure. How much have you been told about insulin use? Do you know about carb counting or have they given you fixed doses? Do you have a background insulin as well, like Lantus or levemir? Sorry for all the questions but it's hard to provide any useful suggestions without understanding how you're using the insulin. I'm very sensitive to insulin too, and generally it's the background insulin that is my enemy not the novorapid, if that's too high all hell breaks loose.

It's good they're testing you for MODY because treatment for that might well be different, but in the meantime if you can tell us a bit more about your insulin regime we might be able to help 🙂
 
Hi and welcome from a confirmed MODY! Im not on insulin so cant advise on that side of thing. But I had issues with various tablets not working, I have just been put on Empagliflozin, which seems to be working and I am starting the higher dose at the weekend and hoping that it will do the trick.
 
Hi I am Mody and on insulin. I cannot take the novorapid too quickly as my blood spikes between 2 1/2 & 3 hours. I inject about 15 minutes after eating, no hypo's. If I were to inject before, I would definitely get hypoglycaemia.
 
The one thing with MODY is that it is a genetic form of diabetes. So you should have a family history of it!

There are a few different types that are treated in different ways. I assume by "not responding to tablets" you mean not responding to Metformin? Because there is one form of MODY that responds extremely to Sulfonylureas.

Hopefully they get to the bottom of exactly what type you are so you get the best treatment to control your diabetes.
 
Hi everyone

Thanks so much for all your replies i feel like have been dealing with this all for 10 months on my own!

I was put on 2000mg of metformin and gliclazide but my weight was badly going down i was deemed underweight and my baby was 5 months so put on 8 units of toujeo insulin at night then between 2 to 4 units of Novo rapid? I take it when my dinner is on table but would have sugars over 9 2 hours after eating then it crashes within half hour?

They have now decreased my insulin and r trying me on gliclazide again but keeping me on toujeo at night?

My fasting sugars r all over 10? Old measuring i know but just haven't been explained new measures??

Just a bit lost really?? Feel hungry all the time and am walking up to 3 times a day to keep sugars down?
 
Thanks Mark!

To be honest I really don't know? The last time I seen my consultant i was told I've 1 in 4 chance of being mody that's literally all I know?

I'm in northern Ireland so to be honest I've seen one good consultant in 10 months and the rest of them including dieticians just say they don't know how to deal with me? Which is worrying in itself!!
 
This link might be useful for some background on MODY: http://www.diabetesgenes.org/
I was tested for MODY3 (HNF1A) as I had 3 generations of diabetics in the family. I was negative.

There is also something called LADA of which there are several people in this forum.
 
Thanks for this though I think will just wait and see!! I hope my tests come back negative as I've 2 children i don't want having chance of it!

But yes I've strong family history of diabetes! Although every1 else has theirs under control!
 
Hi Vinta Im a confirmed MODY and I have been struggling to get my numbers down. Most days my waking number is over 10mmols, Ive been on metformin, gliclizide, alogliptin and empagliflozin. I am now on gliclizide and empagliflozin. I am starting the highest dose of empagliflozin on sunday (im doing a 28k walk saturday and dont want to risk going too low). The Dr has said that this is the last tablets that I can go on, if those dont do the trick they are going to try me on Victoza next. The lower dose of empagliflozin has made a bit of a difference with most of my readings now bewteen 8-12. I hope they manage to get you fully sorted out soon.
 
Stitch147 said:
Hi Vinta Im a confirmed MODY...
Click to expand...
Stich - out of interest did they confirm what type of MODY you are? There are lots of different forms! I'm surprised they are putting you on Victoza because my understanding was that if sulf's don't work you get moved onto insulin. Possibly things have moved on a bit!
 
Mark T said:
Stich - out of interest did they confirm what type of MODY you are? There are lots of different forms! I'm surprised they are putting you on Victoza because my understanding was that if sulf's don't work you get moved onto insulin. Possibly things have moved on a bit!
Click to expand...

I am MODY3, sulf's worked really well when I was first put on them, the Dr doesnt want to increase the dose of them due to weight issues (I gained some of the weight I initially lost when I was put on them), he wants to try all other means first before going onto insulin.
 
Yes stitch147 I've been told same if mody they prefer to exhaust all options before insulin!
I was put on insulin in Apr as my baby boy was 5 months and I'd lost over 3 stone from having him and hadn't even put 2 stone on in pregnancy due to bein controlled pregnancy with insulin and diet!
Can i ask do u just feel exhausted all the time? I've went back to work last week 3 days a week and today I feel like I can't get off sofa it's dreadful as I've 2 kids age 2 and 10 months and I feel like I'm letting them down!!
 
Im better than I was. When my BG readings were in the high teens and 20's, yes I did feel totally drained some days. Now that they are a bit lower I dont feel as bad. Hopefully when they are down to where they should be I wont be too bad. Its just that last little bit to go.
 
Yes I think my highest reading was 34.4 but the worrying thing is when my sugars r high i don't even feel ill?
Thankfully now their rarely above 15!
You have given me some hope it will be sorted eventually!
 
When I was diagnosed my finger prick test was 26.6 and HbA1c was 127 and I felt fine with no symptoms. Some days I can have a reading of 18 and feel fine!!! I do sometimes put tredness down to commuting to work, as I work in Central London and travel in from near Southend each day.
Keep going back to the Dr's if youre worried about anything. My gp is excellent and he is certified in diabetes care. He has been great. At the moment I go nearly once a month to see him as he says that I am a weirdo and he wants to make sure he gets my treatment right!
 
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