New member. Diagnosed Mody HNF4A after being misdiagnosed with Type 1 after 23 years.

[JasKM]

Hi All,

My names Jas. I'm 39 and have been Diabetic since the age of 16.

I have joined the forum to obtain further insights into thos living with MODY and the impacts to their life. Also to get an understanding of how I can make it work for me after only knowing Type 1 for 23 years of my life.


Currently taking Lantus Background insulin, Apridra Quick acting and Metformin.

Changes to come mean I will stop quick acting Aprida and start to take the Gliclazide twice a day. Very nervous about this and not sure what the expect. Any feedback or input would be useful.

1.Do people suffer with weight gain on Gliclazide
2.How does this impact excersize
3.Food in terms of low Carb and smal meals
4.Hypos - are they regular with Gliclazide


Thanks in advance
Jas

 

[EllieM]

HI @JasKM and welcome to the forums.

I'm going to tag @DEBBIESCOTT who I believe has the same variant as you.

I can only imagine what a shock it must be for you to get the changed diagnosis. Hopefully it will allow you to get treatment that will let you gain better control of your diabetes.

Good luck and once more welcome.

 

[JasKM]

HI @JasKM and welcome to the forums.

I'm going to tag @DEBBIESCOTT who I believe has the same variant as you.

I can only imagine what a shock it must be for you to get the changed diagnosis. Hopefully it will allow you to get treatment that will let you gain better control of your diabetes.

Good luck and once more welcome.

Thank you so much! Cannot explain how greatful I am.

I am struggling to get information and have been reading endless papers on studies.

HNF4A is a rare one.... so I felt that this is the right forum to share this and see if anyone else has any advice.

I have only just started wearing the Freestyle Libra 2 to track before I start the new meds. But it is stressful to say the least. For me it's to understand how I can make it MODY work for me as I have done Type 1. Just not enough information out there at present.

Thanks Again
Jas

 

[JasKM]

@DEBBIESCOTT, it would be great to chat and find out more if you have the same variant as me.

 

[Helena langman]

I do not where to start I diabetes type 1 only got diagnosed a few days ago I'm 40yrs old

 

[Daibell]

Hi. You would only gain weight with Gliclazide, same for insulin, if your carb intake is too high. Both provide mor insulin in the blood which enables the body to metabolise the carbs into glucose and then possibly fat storage. I was on full dose 320mg for years with no weight gain. Hypos would result if the dose is too high.

 

[DEBBIESCOTT]

Hi
Wow what a shock after all this time
Anything you want to know just ask & I’ll do my best to answer, not much information out there so can only go on my own experience
I’m on 20mg gliclazide daily take it in the morning 30 minutes before breakfast
Exercise
I exercise a lot, strength training 2 or 3 mornings a week, swim, cycle & run
Always have a protein shake straight after, only run later in the day or after work as cardio in the morning raises my blood sugar & lowers it at night
I eat 3 meals & 2 or 3 snacks each day, I eat low carb but not as strict as a lot of people
Haven’t managed to put a llb on with gliclazide
If blood sugar 2 hours after eating isn’t roughly was it was before eating a snack cheese, peanut butter, cooked meat will lower it
Can hypo if I don’t eat enough
Stress, illness, lack of sleep has no effect on blood sugar
Antibiotics make me hypo, alcohol raises my blood sugar
Don’t know if MODY affects people the same or if it can be individual
If I can help in any way just ask

@DEBBIESCOTT, it would be great to chat and find out more if you have the same variant as me

 

[JasKM]

@DEBBIESCOTT

Thankyou for replying. I am yet to start my tablets. Tomorrow is my first day and I need to remember that I am not taking my quick insulin.

I am nervous as do not know what to expect. HNF4A seems to be a gene with not alot out of there.

I guess my biggest worry is weight gain but I do take metformin to help with this and will have to continue my background insulin.

Do you eat more because you feel hungry or trying to keep sugar steady?

 

[JasKM]

I do not where to start I diabetes type 1 only got diagnosed a few days ago I'm 40yrs old

I would start with a dafne course. It will help explain how to portion food and carbs with insulin.

It is life changing but remember, you can lead a normal life with it.

 

[DEBBIESCOTT]

@DEBBIESCOTT

Thankyou for replying. I am yet to start my tablets. Tomorrow is my first day and I need to remember that I am not taking my quick insulin.

I am nervous as do not know what to expect. HNF4A seems to be a gene with not alot out of there.

I guess my biggest worry is weight gain but I do take metformin to help with this and will have to continue my background insulin.

Do you eat more because you feel hungry or trying to keep sugar steady?

Hope you’re getting on ok with the tablets, presuming gliclazide
I eat more to keep blood sugars stable, casien is really good for me as it delivers a steady stream of protein
I had to stop taking metformin as it had no effect on blood sugars but increased my resting heart rate from low 50’s to low 70’s, do you have a libre? Find its invaluable for keeping an eye on blood sugars

 

[fawbs]

I am 33 and was told for many many years I was type 1. I found out I was Mody 3 when my younger sister got diagnosed with diabetes and they did a genetics test.

My other younger sister and my mum also have mody so it definitely runs in the family haha.

I have been on Insulin for years, since i was 14 and have resisted all moves to be put onto tablets. I like the control I have with fast acting insulin. I.e if my sugars are running high I can take some Insulin to bring them down. I also take slow acting Insulin.

My sisters take tablets and one is having a lot of issues lately as she is too sensitive to the meds and her sugars are running too low!

 

[fawbs]

I'd like to add as well that I have found the best and most reliable way for me to control my sugar levels has been following a keto diet. I take far less Insulin and my sugar levels are much more stable.

 

[DEBBIESCOTT]

How are you getting on?