MODY - has anyone's diagnosis changed?

[PattiEvans]

I don’t agree that low carb is the way to go (unless you choose to) It’s unnecessary and damages insulin sensitivity, which is something I want to maintain. There’s a lot of info online about insulin sensitivity and how to maintain it.

As we so often say "every one is different". I have been moderating my carbs now for over 18 years and still have excellent insulin sensitivity. I don't cut carbs out entirely, but I've never been that fond of eating tons of carbohydrate. I eat a pasta meal about once a month, pizza is once a year and if I have a burger I only eat half the bun. However, a carb heavy meal that most people think is "normal" will skew my BGs for over 24 hours as the more carbs the more room for errors in dosing. Witness yesterday when we were at some friends' house for lunch and I had tons of carbs. FBG this morning 12.9 and I am still struggling to get the numbers down mid-afternoon.

 

[everydayupsanddowns]

I REALLY want to be on a closed loop system but the last year on t-slim was really stressful and the omnipod seems to work slightly better for me for now...

Ah sorry you didn’t get on with tSlim and G6 - it’s been the best system for me to date.

I think the next Omnipod (Horizon?) is rumoured to be integrating with a number of CGM alternatives, including Flash and Dexcom.

Will be interesting to see what happens with that 🙂

 

[mage 1]

This is what I was reading: https://www.england.nhs.uk/2021/08/nhs-to-diagnose-thousands-of-people-with-rare-diabetes/

I found that very interesting thank you.is this just happening in England as I live in wales?

 

[SB2015]

Yes I think low carb is going to be the way to go - i've not managed it yet as I've got two under 5s and a job and just getting food on the table is hard enough! And to be honest I really love carbs, but i'm not currently driving because i'm too scared of hypos and we've moved to the sticks so yes, something has to change!

It sounds like you have got your hands full @MiaVision

In answer to your original question, some do get a different diagnosis after a while especially adults as many are assumed to be T2. I think that there are tests to identify the difference between T1 and MODY but I think that the management will be very similar either way.

It is understandable to avoid driving if you do not feel that your levels are behaving at present. Are you reviewing Your data regularly to see if you can see any patterns in what is going on? I still go back to that when things go a bit haywire.

You mention that you love carbs, and think that this will cause problems. I reckon carbs are designed to make us like them!!! If you want to reduce them could you consider reducing the portion sizes. I realised that my spikes were down to the number of carbs I was having so set myself a target for each meal. It looked a bit small to start with, but we bulked out meals with lower carb veg and have now got used to it (reduced spikes and feel better for it)

keep in touch and keep asking questions.

I found the transition to closed loop was difficult for me for a variety of reasons including kidney stones which sent things haywire. I gave up for a while and then had another go and now find it very helpful. If you are keen to get that going for you perhaps have another go in the future. Things are changing so quickly at present and who knows what will become available in the next few years.

 

[everydayupsanddowns]

The tangential discussion about people’s experiences of lower carb approaches in T1 has moved here:

https://forum.diabetes.org.uk/boards/threads/carb-levels-and-choices-in-t1.96325/

 

[PattiEvans]

Thank you Mike.

 

[MiaVision]

Ah sorry you didn’t get on with tSlim and G6 - it’s been the best system for me to date.

I think the next Omnipod (Horizon?) is rumoured to be integrating with a number of CGM alternatives, including Flash and Dexcom.

Will be interesting to see what happens with that 🙂

Yes I'm holding out for the Horizon! I'm on Dexcom so that could be life changing. Wish I could've stuck with the t-slim but I'm not sure if it's the cannulas or my absorption but i just couldn't get it to bring my sugars down.

 

[MiaVision]

I found that very interesting thank you.is this just happening in England as I live in wales?

Oh good question I don't know. I think a lot of the testing is being done in Exeter. I'm sure I read somewhere that they were testing people in Scotland too.

 

[MiaVision]

It sounds like you have got your hands full @MiaVision

In answer to your original question, some do get a different diagnosis after a while especially adults as many are assumed to be T2. I think that there are tests to identify the difference between T1 and MODY but I think that the management will be very similar either way.

It is understandable to avoid driving if you do not feel that your levels are behaving at present. Are you reviewing Your data regularly to see if you can see any patterns in what is going on? I still go back to that when things go a bit haywire.

You mention that you love carbs, and think that this will cause problems. I reckon carbs are designed to make us like them!!! If you want to reduce them could you consider reducing the portion sizes. I realised that my spikes were down to the number of carbs I was having so set myself a target for each meal. It looked a bit small to start with, but we bulked out meals with lower carb veg and have now got used to it (reduced spikes and feel better for it)

keep in touch and keep asking questions.

I found the transition to closed loop was difficult for me for a variety of reasons including kidney stones which sent things haywire. I gave up for a while and then had another go and now find it very helpful. If you are keen to get that going for you perhaps have another go in the future. Things are changing so quickly at present and who knows what will become available in the next few years.

Thankyou. I'm sure my love of carbs is part of the problem! When I do a carb free basal test day it blows my mind how straight the lines are. I really need to start driving so I'm thinking go low carb for a few hours before getting in the car will probably help me. I think with the closed loop I'm used to adjusting a lot and I definitely found with Control IQ it was hard not to make changes myself alongside the pump and mess everything up. I had double arrows up and down constantly on dexcom with CIQ.

 

[PJL]

Hi Team Diabetes - sure I'm really late to the party with this but just been reading about MODY and misdiagnosis and wondering if my T1 of 27 years could be a wrong diagnosis. Has this happened to anyone?

Quite possibly wishful thinking, but diagnosed at 13, normal BMI, no DKA or more than trace of ketones ever, unpredictable blood sugars and some periods where I feel like I don't need any insulin at all (I do still take it, but constantly eating to keep up). What I don't have is diabetic parents, though it is in my grandparents' and great grandparents' generations.

I want to speak to the hospital about it but don't want to be the crazy woman who self-diagnoses from the internet! Just wondering if anyone's been through this?

Mia x

I was tested for MODY 17 years ago. I was pregnant with my 2nd child when I received my diagnosis. My brothers, mother and father were given tests. They all returned negative results, meaning I was the 'De Nova' generation. So no family history of diabetes. Up until my diagnosis I was treated as a gestational diabetic and then type 2.

 

[MiaVision]

I was tested for MODY 17 years ago. I was pregnant with my 2nd child when I received my diagnosis. My brothers, mother and father were given tests. They all returned negative results, meaning I was the 'De Nova' generation. So no family history of diabetes. Up until my diagnosis I was treated as a gestational diabetic and then type 2.

oh wow that's really interesting. Yes I hadn't thought someone has to be first in a family line! Definitely going to mention to my consultant. If not too personal, do you mind me asking what it was about your diabetes the consultant thought didn't fit the mould? M

 

[Inka]

I was tested for MODY 17 years ago. I was pregnant with my 2nd child when I received my diagnosis. My brothers, mother and father were given tests. They all returned negative results, meaning I was the 'De Nova' generation. So no family history of diabetes. Up until my diagnosis I was treated as a gestational diabetic and then type 2.

That’s really interesting. I’d love to hear more too if you’re ok to share eg why MODY was suspected, did you have a C Peptide and Type 1 antibodies tests, did your medication change, what form of MODY do you have?