MODY - has anyone's diagnosis changed?

[MiaVision]

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

 

[Inka]

I had tests for MODY @MiaVision but they showed i was Type1 as originally thought. If you speak to the hospital, they’ll assess whether MODY is a possibility and then they often do some initial tests to see if it’s worth doing the genetic tests (because they’re expensive).

I don’t see why the hospital would think you’re crazy 🙂 There’s an initial screening thing you can do. I’ll post a link if I can remember where it is.

 

[Inka]

Here we are:

https://www.diabetesgenes.org/exeter-diabetes-app/ModyCalculator

.

 

[rebrascora]

Would a GAD antibody test not be cheaper and confirm Type 1 and may have been done at initial diagnosis which could be checked on records and hopefully clarify the situation and put your mind at rest. Would there be any benefit to being MODY as oppose to Type 1. I assume, if you need insulin then, you will continue to need insulin regardless, so I am not sure it would be a benefit being reclassified.... but I may be missing something. Obviously, it is good to get the correct diagnosis but usually it is so that you can fight for the appropriate treatment/tech to help support you ie Type 1 misdiagnosed as Type 2. It may be that after 27 years you no longer have GAD antibodies to verify Type 1, but hopefully those tests were done at the time of diagnosis.

As regards not needing much insulin at times and eating to keep up... have you not had an education course (Like DAFNE.... Dose Adjustment For Normal Eating) which enables you to adjust your insulin to your body's needs so that you don't need to "eat to your insulin"?
We all find that our insulin needs change over time and seasons and for various other reasons (Covid vaccination was a trigger for quite a few people and Covid infection certainly has been), so adjusting your insulin doses to balance what your body needs is a key skill in managing your diabetes.
Hope that doesn't come across as critical as it isn't meant to be. Some people just seem to miss out on these education courses for a variety of reasons, often because they were diagnosed as a child and they really can make a huge difference to your understanding of how your insulins work and it is not just about carb counting as the title suggests. For me the basal insulin information was key to improving my knowledge and understanding and confidence in adjusting my basal doses to get the best fit for me. Having the correct basal insulin in terms of doses, timing of doses and in fact insulin brand, is the most important aspect of diabetes management in my opinion. If your basal insulin isn't right nothing else makes sense.

 

[Robin]

Would a GAD antibody test not be cheaper and confirm Type 1 and may have been done at initial diagnosis which could be checked on records and hopefully clarify the situation and put your mind at rest

I don’t think GAD is a very reliable test for Type 1s who have had it a long time, once you’ve destroyed all your beta cells, the antibodies don’t show up any more, I was told.
I doubt one was done on diagnosis, certainly when I was diagnosed 14years ago, they were very expensive, and not routinely done if the diagnosis seemed clear cut. I only had one because there was doubt (rightly) about my Type 2 diagnosis.

 

[Inka]

I had a Type 1 antibodies test a few years ago - ie many years after diagnosis - and I still had antibodies. Not sure if that’s good or bad!

 

[MiaVision]

Thanks everyone - it's definitely a bit of wishful thinking on my part. I was reading about a woman up north who was taken off insulin after a T1 to Mody diagnosis switch, will see if i can find the link, though i'm sure that's very rare.

Yes I've done DAFNE, twice in fact, on a pump and CGM, good at managing levels, done all recent basal checks etc. It's just that I go through periods where any insulin i take seems to require massive additional eating, and I've always felt like there's something weird going on.

Have had a look at old medical notes and no records of any tests unfortunately. From my memory it was immediate diagnosis on a finger prick blood test of 21, they did take blood but i assume that was an hba1c, but i was 13 so may have missed other info! Will mention it to the consultant next time i'm in and see what they say.

x

 

[MiaVision]

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

 

[Inka]

I saw that story @MiaVision and I can understand why you’re wondering about MODY. It will have piqued a lot of people’s interest. My consultant said the family history was usually strong with MODY so before you speak to your consultant, jot down a few facts so you have them on hand ready to give her/him.

 

[rebrascora]

I imagine @Stitch147 might be interested in that article as she is suspected MODY but can manage to persuade her GP to do the testing..... Looks like now might be a good time to push for it with this initiative.

@MiaVision Have you considered trying a low carb diet and seeing if you can reduce your insulin to the point that you need a very minimal amount or perhaps none.... or maybe just get by with a bit of basal.

Please let us know how you get on. It would be really interesting to hear more about your journey, particularly if you do turn out to be MODY.

 

[Inka]

Did you do the calculator I linked to @MiaVision ? It gives a good idea. Once you get the result it will also give you further percentages.

 

[MiaVision]

Did you do the calculator I linked to @MiaVision ? It gives a good idea. Once you get the result it will also give you further percentages.

Ha I did - i got 0.7%! I think because my parents aren't diabetics that makes it much more unlikely!

 

[MiaVision]

I imagine @Stitch147 might be interested in that article as she is suspected MODY but can manage to persuade her GP to do the testing..... Looks like now might be a good time to push for it with this initiative.

@MiaVision Have you considered trying a low carb diet and seeing if you can reduce your insulin to the point that you need a very minimal amount or perhaps none.... or maybe just get by with a bit of basal.

Please let us know how you get on. It would be really interesting to hear more about your journey, particularly if you do turn out to be MODY.

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!

 

[rebrascora]

If it is any consolation, I loved carbs too, particularly bread and potatoes, but after the initial difficulty of figuring out what to buy and how to serve it (bread is a carrier for so many foods) I actually quite enjoy eating low carb now and best of all I don't crave carbs like I used to, but I can entirely understand the difficulties involved when you work and have young children. I manage quite easily because I live on my own, so apart from hypo treatments there is no temptation in the house.

 

[Inka]

Ha I did - i got 0.7%! I think because my parents aren't diabetics that makes it much more unlikely!

I don’t remember my exact score but it was something like 65. And yet I still didn’t have MODY *sigh* My consultant made me feel a lot better by explaining that the type of MODY she thought I might have would have meant that I’d have ended up on insulin eventually anyway so even if I had been misdiagnosed my treatment probably wouldn’t have changed.

Out of interest, how much basal and bolus insulin do you take?

 

[Inka]

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!

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.

If you’re not MODY and you’re having hypos, then there could be a simple answer. I’d also say that having young children does affect blood sugars in an unpredictable way and that’s not the fault of diet - just the unpredictable nature of young children!

 

[everydayupsanddowns]

Sorry to hear about the vagaries of your insulin sensitivity @MiaVision

Sounds like you have all the skills and tools, gadgets to manage T1, but it is darned tricky when the goalposts keep running off over the horizon!

Do mention your MODY suspicions to your Dr and they will be able to assess whether running the genetic tests is appropriate in your case.

Do you tweak your basals and ratios when you go through one of those insulin-sensitive periods? And does your pump/cgm offer any hybrid closed loop automation?

 

[MiaVision]

I imagine @Stitch147 might be interested in that article as she is suspected MODY but can manage to persuade her GP to do the testing..... Looks like now might be a good time to push for it with this initiative.

@MiaVision Have you considered trying a low carb diet and seeing if you can reduce your insulin to the point that you need a very minimal amount or perhaps none.... or maybe just get by with a bit of basal.

Please let us know how you get on. It would be really interesting to hear more about your journey, particularly if you do turn out to be MODY.

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!

If it is any consolation, I loved carbs too, particularly bread and potatoes, but after the initial difficulty of figuring out what to buy and how to serve it (bread is a carrier for so many foods) I actually quite enjoy eating low carb now and best of all I don't crave carbs like I used to, but I can entirely understand the difficulties involved when you work and have young children. I manage quite easily because I live on my own, so apart from hypo treatments there is no temptation in the house.

My boyfriend bought my two low carb recipe books for my birthday (and they say romance is dead!) and I briefly but felt like i'd need to spend a lot of time making things out of cauliflower so it's hiding at the back of my cupboard!

 

[MiaVision]

I don’t remember my exact score but it was something like 65. And yet I still didn’t have MODY *sigh* My consultant made me feel a lot better by explaining that the type of MODY she thought I might have would have meant that I’d have ended up on insulin eventually anyway so even if I had been misdiagnosed my treatment probably wouldn’t have changed.

Out of interest, how much basal and bolus insulin do you take?

oh yes that's a mum higher score! was that down to family history do you think? I'm on about 30u a day with a roughly 50/50 split - which I guess is pretty standard. Think I need to keep a food diary because I never keep a note of what I'm eating so when my sugars look fairly normal the drs are happy - but i feel like i'm constantly battling to keep my levels up!

 

[MiaVision]

Sorry to hear about the vagaries of your insulin sensitivity @MiaVision

Sounds like you have all the skills and tools, gadgets to manage T1, but it is darned tricky when the goalposts keep running off over the horizon!

Do mention your MODY suspicions to your Dr and they will be able to assess whether running the genetic tests is appropriate in your case.

Do you tweak your basals and ratios when you go through one of those insulin-sensitive periods? And does your pump/cgm offer any hybrid closed loop automation?

Thanks - not sure if it's me doing something wrong or my body! I do tweak basal and rations whenever I need, but just when i think i've sorted something it all changes again.

Funnily enough i started on the t-slim last year which I was really excited about - but found no matter what I did I was constantly yo-yoing and spiking with crazy highs that no amount of bolus would bring down, so have ended up switching to Omnipod Dash - which doesn't offer closed loop at the moment. 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...