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MODY - anyone else out there?

aliceclaresmith

Member
Messages
8
Location
Norwich
Type of diabetes
MODY
Treatment type
Tablets (oral)
Hi everyone! Just to briefly introduce myself.. I'm 27 and was diagnosed with MODY (Maturity Onset Diabetes of the Young) when I was 18.. that's a story for another time! My mum also has MODY and my brother carries the gene (specifically HNF4A for us).
At diagnosis, I was told I was type 1 and was treated with insulin for a year until it was discovered that we actually had MODY in our family (my mum was on insulin for 25 years) again.. a story for another time. I've been on Gliclazide ever since and I take a really tiny dosage of 20mg in the morning which equates to half a tablet. I live a really active lifestyle and try to eat healthily (but I'm also a lover of sweet treats every now and then). My lifestyle over the past 5 years has included many multi-day hiking trips, daily gym sessions and I'm a keen runner. I have always thought of myself as ''not a real diabetic'' despite my diagnosis. I have previously felt like a bit of a cheat.. feeling like I can live my life without worry and rarely checking my blood sugars. I've also been known to downplay my condition to my friends and family - saying that it's fine, it's no big deal, it never affects me, I'm lucky!
That is until.. the last month or so. I have to admit, that's what has brought me to the Diabetes UK community - over the last few weeks, it seems that even though I haven't changed my dosage of gliclazide in years and I honestly have continued to eat the same breakfast for years (I know, what a bore), I have suddenly become more sensitive to my medication. In particular, during lunchtime walks I've had a few hypo episodes - this is my first true experience of them and I'm shocked at how suddenly they occur. My heart starts racing and I know I need some sugar ASAP - it almost feels like a panic attack and it freaks me out. I feel like I've also had some times following these where I convince myself I have a low blood sugar and I panic again... it's a bit of a vicious cycle.
Anyway, no sympathy needed but I wanted to reach out - any other fellow MODYs out there? What's your story? If anyone knows anything about suddenly becoming sensitive to your gliclazide dosage I'd be really curious to know. Or if anyone else suffers panic attack type situations where they convince themselves something is happening..keen to know your stories. Speak soon! Alice xx
 
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Hi Alice!

Fellow HNF4A MODY person here!

I was diagnosed as a Type 2 initially when I was 20 and it's taken 5 years of curious doctors to finally get tested for MODY and voila... HNF4A! My dad is classed as T2D but is awaiting his genetic results to see if he is MODY. Neither of my siblings have the gene (lucky them!).

Originally I was diet controlled, then moved to metformin for a while but my sugars shot up and I was put on canagliflozin and gliclazide which have now stabilised me! I'll be totally honest, I struggled mentally with being labelled as a diabetic and ignored it for the first 4 years of my life before finally trying to control it in the past 18 months.

I've found that I get extremely sensitive to gliclazide when I exercise, even if only for 20 minutes. My BG will plummet and is sometimes difficult to get back up (great excuse to eat some chocolate though!).

When I go low, I also get very panicked and nervous, so end up significantly overeating to try and make my BG rise back to normal levels, often overshooting and going high... I've recently self-funded a freestyle libre 2 which I'm finding really useful to alert me to lows, as well as to figure out what foods work well for me.

Without wanting to pry, have you changed your birth control method? I've heard of many women seeing increased insulin sensitivity when changing or stopping birth control? Just a thought to consider!
 
Hi Sophie - so great to hear from you, thanks for your reply.

It's so interesting to hear about your story - gliclazide is definitely causing me some jip lately even after all this time! I'm so jealous of your Libre 2 - out of interest, how much did this cost? With these morning hypos looming over me, I'd be so tempted to invest! Also with what you say about overcompensating to get your BG back up I can totally relate with - I did exactly that today because I was so panicky and scared it would drop again and I needed to get home!

I haven't - however it's strange, because lately I feel as though my symptoms in relation to my birth control (pill) have also got a lot worse. Not sure my body is very happy with me! It seems like it's all linked.. which I guess it is really!

If you don't mind me asking, how did you find out about MODY? Was it through your doctors? Mine was diagnosed after I was told I was T1 but my mum then read an article/something online about MODY and requested for us to be tested. We have established that it must run in the family and think my grandad was probably MODY but never knew (just thought he had T2 in old age but we recall him telling us stories of times when he was at work and would fall asleep after eating his lunch..!!). My brother carries the gene but hasn't actually developed symptoms yet - his daughter was born with the gene and suffered hyperinsulinism at birth. All very interesting (but scary) stuff!
 
My libre costs around £100 a month (2 sensors are needed a month and then I use my smartphone as the reader). I'm fortunate enough to be able to afford this as I know that I'm not eligible for this on the NHS, but the information its provided me has been invaluable! You can get a sensor for free (14 day trial) from the Abbott laboratories website to see if you are interested in using it long-term .

I found out about MODY through my doctors. I became the topic of conversation at my practice since I was the youngest patient to be diagnosed T2 but didn't fit T1 or T2 characteristics. My doctor asked to speak about my case with the diabetes genetic team at St Thomas' hospital in London. They agreed to refer me for further testing and that's how my MODY result came about. My dad is currently being tested for MODY as he has been T2 for 25 years and my grandad was T2 as well (now suspected to be MODY) but progressed to insulin later on in life.

There is a great, small MODY community on Instagram who I have found invaluable to learn from and hear others experiences. @livingwithmody has HNF4A and may be able to share some further advice on what you are experiencing with your BG. With so many different things able to affect your BG it's so difficult to pinpoint what the exact causes are for the changes. Definitely feels like playing detective or putting together a never ending puzzle!
 
That sounds great - I'm really tempted to wait and see if it's true that Apple are going to bring out a BG feature in their new watches, I think I'd be hugely tempted as I do love a good fitness watch and the BG feature is just the cherry on the cake haha!
That's amazing, lucky that you had such brill doctors - I am now under a MODY clinic at my local hospital and they're brilliant. I still find it frustrating when I go to the GP and get questioned as to why 'someone like me' is taking gliclazide!
Thanks so much for sharing the instagram page too
 
aliceclaresmith said:
Thanks so much for sharing the instagram page too
Click to expand...

Hey everybody, MODY HNF4 as well! I'm currently 35 years old. I lived as a Type 2 for ten years and then about a year ago the Glucophage no longer kept the blood sugar in check. Additional investigations plus a genetic test then confirmed I had MODY. I've switched to about seven units of Tresiba since.

My question to you is Alice / Sophia is around "burning out" the pancreas with Gliclazide. Did that every come up with the doctor for you? As I understand it Gliclazide is only a temporary solution, it will be a bridge to insulin therapy. By starting insulin therapy earlier it should preserve more beta cells for the future.

FWIW I'm also on a Freestyle Libre 2. It's totally changed my understanding of how my blood sugar responds. What's your HbA1C? Highly recommend it!
 

I was recently tested for Mody but the results were negative. My endo still thinks I am but a mutation/deletion not yet discovered. There is a very good Facebook group which covers all the Mody types. Mostly US which is interesting as they seem further ahead than the UK with research.
 

Thanks so much. I applied to the group like a week ago but still I haven't been let in. Here's to hoping I don't need to wait much longer!
 
Hello. Yes I'm Mody 3 there aren't many of us about haha. My mum and 2 sisters all have mody 3.
 
I was initially diagnosed as type 1 when I was 14 I'm 32 now. I have always been treated with insulin and still take it now.

My two younger sisters 19 and 21 have recently been diagnosed as mody and they are treated with glicazide. This then lead to me having a gene test which confirmed mody.

For me I like knowing what type of diabetic I am now but as I have been on insulin for so many years I am happy to continue with the insulin.

I also like the control insulin gives me of my sugars are a bit high to correct and bring them down.

Recently I have been trying the keto diet which I have found drastically reduces my need to take insulin x
 
Hey there !
Mody 3 as well. I am 30 and been diagnosed 5 years ago. Managing with a strict diet (ketogenic) and exercice. Did try Januvia and Metformin but does not make much difference. A1c around 5%. I keep testing to find how the body reacts best.
Looking forward to hear form you as well.
 
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