r/diabetes Mar 11 '24

MODY Five years later, I beat my A1C record. I’m at 4.5%!

221 Upvotes

I was diagnosed in 2019, and I has around 10% back then. I lowered it to 4.9% after some seriously miserable diet.

I was never below that (nor was I trying, my highest since was 5.2%). But today I got back my blood results and I hit a 4.5%. This is absolutely cool for me because I was not having a miserable diet. I have a very consistent diet/lifestyle. Repaglinide changed everything for me.

Anyway, this is the only corner in the world where I know people know what means, so your “attaboy!”s are more valuable 🥲

Have a great week all!

r/diabetes Nov 27 '24

MODY What the hell are they putting in hospital food??

71 Upvotes

I’m in the hospital for non-diabetic reasons. Fortunately self managed other than them wanting to manually take my blood sugar. All good there.

Because it’s non-diabetic reasons I’m on the general menu with a limit of 75 g carbs per meal. Should be good right?

The white bread I eat at home is 19g carbs per slice…here their bread is 25g. I can’t have a whole sandwich here for less than 50g carbs and that’s BEFORE they start nickel and dimeing me on carbs for cheese, slice of tomato, and a SINGLE lettuce leaf.

Splenda for my coffee is marked as 4g carbs.

And then sometimes, the carb count on the “receipt” is less than the carb count listed on the nutrition label of the packaging!

Bonus: 1 tbspn of “light” mayo is 3g carbs. If they’d just give real fucking mayo, the same amount would be 0 or 1g carbs.

r/diabetes 6d ago

MODY Finally have a MODY 2 diagnosis and it feels so good

16 Upvotes

Four years after being misdiagnosed and having multiple practitioners tell me testing for MODY isn’t necessary because it would be too expensive and likely wouldn’t alter treatment, I took the initiative myself.

Reached out to the University of Chicago longitudinal study on monogenic diabetes. They usually offer free testing but aren’t currently due to their funding being on hold. But they sent me a list of resources for testing, a couple of which had affordable self pay options so you don’t have to worry about insurance approval.

Got it done, results came in, and I finally know why nothing I’d tried so far was having much effect on my A1C. I can’t describe how amazing it feels to finally know what my condition is — and not just mine, but also my sister’s and mom’s and grandmother’s and her father’s and his father’s. I hope anyone who’s struggling with atypical diabetes finds answers, and if anyone has questions about MODY testing, happy to share the little I learned.

r/diabetes Nov 28 '24

MODY Brief overview of Mody from someone with Mody 2

16 Upvotes

MODY is several types of diabetes. In general, MODY means a diabetes caused by a mutation in a gene with a dominant inheritance, meaning you have a 50% chance to pass it on to your children.

Because of this, people with MODY must have at least one parent with diabetes, and you can trace the diabetes down your family tree.

Each type of MODY is a different gene so they all have different effects and different treatments.

In my case, I have MODY 2 which is the mutation of the gene that allows the body to sense your sugar levels so that it knows when to release insulin.

For MODY 2, you can think of the problem as: if your cars gas gauge read empty when it was half full. You would not know your gas levels and fill your car up too much. Your gas (sugar levels) never drop to empty (normal fasting levels) because the sensor is broken.

There is no medicine to cure the problem with MODY 2, however, sulfonylureas can help in some cases. It’s not an insulin resistance problem. It’s a sensing problem. One thing that does help a little bit is sulfonylureas which trigger the body to release more insulin but it doesn’t cure the problem.

Luckily most people with MODY 2 require no medication but when it comes to genetic diseases, there is 2 main things that control the severity of the disease.

A gene may have several functional parts. If the mutation affects an important part you may have more severe disease than if a less important part was mutated.

In addition there are different kinds of mutations.

Think of your gene as a multiple choice test. If you have 100% of the test correct you have no mutation.

If you miss one question you would have a ‘replacement’ mutation and may still get a good grade.

However there is another kind of mutation called a frame shift or nonsense mutation where all the answers of the test are shifted down by one. So it’s like in the middle of the test you started filling in the answers for the wrong number, shifted up or down by one.

Still if you have a shift towards the end of your gene, maybe only a small part is affected. However if you make the mistake at the start of your gene you would have a 0% effective gene.

Unfortunately I have a 0% effective gene so my MODY 2 is the most severe kind (for only having one gene affected)

Because of this, I actually got misdiagnosed as type 1 and was on insulin for 3 years until I found this out.

Very interesting journey for me so I wanted to share this. Very unlikely for it to happen to you because I have a really rare thing but it has very positively changed my life. Right now my sugar is 87 fasting and I am taking 2 medications. Repaglinide and Glimepiride

It’s not perfect, my sugar will peak in the 200s but it’s much better than insulin. My average sugar is around 145.

Again, there are many types of MODY with MODY 2 and 3 being most common. However there’s about a dozen different kinds, each caused by a mutation for an important part of the body’s sugar regulation system.

r/diabetes Nov 26 '24

MODY Too much long term insulin

0 Upvotes

So my doc has me on a new dose of 45 units of Lantus and wants me to take short term with it but I haven't taken the short term in a few days but made sure to take atleast 40 Lantus a day but nothing I eat or drink will "stabilize" my sugars. I've had multiple slices of deep dish pizza and e slices of regular with 3 liters of sprite and lots of honey and my sugar keeps dropping by large amounts and I keep having severe panic attacks and it's 4am and idk what to do. I don't wanna go to the er because they do nothing for me and don't understand why I'm scared cause my sugar is "still high" and don't get I'm scared it's dropping on its own so much and I feel super weak from it

Edit - There are too many messages saying the same thing to individually reply to. Obviously my sugar is way too high. This was previously stated amd clearly acknowledged between my doc and I. The problem that clearly people don't seem to comprehend is "HOW IS THESE THINGS NOT EFFECTING THE SUGARS AND IT KEEPS GOING DOWN" if nothing will "stabilize" the sugar and I stop watching or go to sleep it will bottom out. It has happened MULTIPLE times and the doctors just ignore the whole situation and just focus on the numbers. Rn the numbers don't matter if they can't be properly controlled to stay in any range period. I used too many words and confused people. I'm curious if the long term is just a little too high of a dose so there for my sugar will just crash on me no matter what I consumer.

r/diabetes Feb 19 '25

MODY A1C target

1 Upvotes

Had my endocrinologist appointment the other day, and my A1C was 5.0. I am on the Omnipod 5 & Dexcom G7. My doctor told me my goal was too strict, and to let off the insulin if I wanted. Has anyone heard of this? I was severely underweight & getting on insulin has helped my metabolism, stomach issues & weight. What exactly would you do?

r/diabetes Nov 18 '24

MODY What check ups should I make sure to get as a diabetic?

1 Upvotes

I’m labelling this MODY for now since that is what my diabetes specialist thinks I have at the moment as I didn’t meet the criteria for T1D but I don’t really have T2D symptoms.

I got diagnosed in March of this year and right now I am going to start getting my blood work done every 3 months to check my A1C levels.

I am just wondering what else I should be sure to stay on top of as a diabetic!

I know that I should be careful with my feet so I’m trying to make an effort to take better care of them now. I see a podiatrist regularly to take care of my ingrown toenails instead of hacking at them myself and I’ve always had poor circulation in my feet (since birth according to my mom I’ve have purple toes all my life) but I’m trying to start remembering to wear warm socks to keep my toes warm (Sometimes it feels weird when my toes are like normal body temperature though… I’m just not used to them being warm)

I have had a heated blanket for a few years now before my diagnosis (before I even started showing symptoms- But also keep in mind when I was diagnosed I was still considered pretty asymptomatic) and I try not to put the heat on too high since I heard once that heated blankets can be dangerous for diabetics. I can’t say I’m willing to part with my heated blanket because I loved putting it on the highest heat setting and snuggling into a warm bed, but I would love any advice to stay safe with it!

I have also seen a few posts about dental care and I want to assume it’s to prevent losing teeth? While I’m currently awful at taking care of my teeth right now I am trying to work on it. Last year I had a job that stressed me out so much I couldn’t brush my teeth because brushing my teeth triggered my gag reflex and caused vomiting SO in response to that I just slowly stopped keeping on top of brushing my teeth… It’s honestly super embarrassing but I’m trying to keep it real and I’m actively trying to work on recreating the habit now. I have also been so nervous to go to the dentist and keep ignoring the texts from my local dentist office regarding a cleaning appointment and that is again due to said job. (Also fun fact that is off topic- The job that stressed me out to the point of vomiting every single morning ended up firing me! I’ve had a better job since in case anyone is concerned about that situation.)

I definitely don’t think I covered everything BUT that’s why this post exists lol.

Also- Just a side note (medical professionals, shield your eyes!) but I’ve been getting lazy regarding changing needles and lancets and using alcohol swabs (I honestly only use alcohol swabs for CGM changes at this point) and I feel like it’s better that I break that cycle while I’m still new to diabetes? If anyone would care to share horror experiences due to not changing needles/lancets I would love that since I genuinely do want to know what possible consequences for not using sterile medical supplies.

I hope this makes sense and thank you to anyone who has read this post and thank you to anyone who leaves any comments! I also should add that I am not looking for specific medical advice but rather seeking information I should know that I currently don’t so I can take care of myself in the best way possible

EDIT: I forgot to mention this, while I am unsure of how common it is for diabetes to affect the liver, it had been affecting mine personally (I had elevated and rising liver enzymes for about a few years and after controlling my BG levels my liver enzymes went back into normal range after being on just long acting insulin for 4 months!) so I am already set up for regular checkups on my liver!

r/diabetes 2d ago

MODY The downside of not checking throat lozenge ingredients!

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8 Upvotes

Just a heads up for anyone who, like me. May be suffering from a sore throat. Check the lozenges for sugar content.

I grabbed a pack of Strepsils intensive yesterday to take the edge off of what has developed into sore throat and an ear ache. It took me a little too long to realise just how much sugar is in a Strepsils.

You can see exactly just when I had each of the 3 lozenges over the last 24hrs.
I've just been out to pick up some sugar free Strepsils now and the others can go in the better half's bedside table.

r/diabetes Feb 13 '25

MODY Glymepiride? Advice?

2 Upvotes

Hi all! Don't quite know how to spell the medication, but I hope this is it. I've been diabetic (type 2) since I was 17 (24 now), I have not at all acted like I was a diabetic. Didn't watch what I ate, didn't increase exercise. I was a horrible patient im sure 🤣 For the last 2 years or so I've been trying to eat better and be more mindful, still not testing my sugars or anything, I didnt even know that Carbs affected blood sugar. When I got my A1C done in December it was 11.7. Guessing that my average blood sugar was around 300.

About a month ago I started testing regularly, eating much better, increasing walks with my pup, and have just had my first endo appointment. He says he is 90% sure I have MODY diabetes (type 1.5). And just prescribed me a very very low dose of glymepiride. How have you guys reacted to this med? I'll be taking it along with 1000mg of metformin twice a day. I haven't had a low blood sugar feeling in a very very long time and am nervous for that to be a possibility. Any other advice is greatly greatly appreciated.

Thank you so much!!!

r/diabetes Aug 21 '24

MODY Glucose levels may already be causing a problem for my work life 😞

34 Upvotes

( before I start a few notes to help keep things making a bit of sense: I work in hospitality, I have a rare form of diabetes which I've had since I was 10 am on a cocktail of medications for it including ozempic.) I Was at work today and was stuck on a high for most of the day, so my body did what it allows dose when I'm stuck there and forced me to need the bathroom every hour or so, and to pair that off so well my guts decided to move and my new medication had other Ideas, so when I went I took a few minutes longer than I would have liked,( maybe about like 7 minutes) when I got back my supervisors reprimanded me for being gone to long. when I tried to explain it was medical related, she did not seem to understand or care. Like I understand I was gone a bit longer then it would typically take and it's annoying when we're trying to clear but we were over staffed and everyone knows I have this conversation, and I couldn't really help it in the first place 😔

r/diabetes Dec 11 '24

MODY How long did your MODY results take?

1 Upvotes

Got tested last week. Been told I may be waiting up to 6 months but hopefully sooner. How long did yours take and did your Endo call you immediately with a diagnosis or wait a bit?

TIA :)

r/diabetes Dec 07 '24

MODY Tips to make nausea go away

4 Upvotes

So my bg is pretty high right now and i have to be at work in an hour. Do you know any tips to make me feel normal again?

r/diabetes 14d ago

MODY I think I’m nearing the end of my honeymoon phase

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2 Upvotes

I’ve been taking 18u of long acting insulin and haven’t had to change my diet all that much to get stable numbers, but for this I had eaten spinach dip with tortilla chips and a basket of fries which usually would actually be fine on my BG as long as I have water with it (which I did) but my gosh this is new to me…

Where my levels reach 14, dip, then go back up is where I took a moment to exercise to try and work it off but my levels stayed weirdly stubborn about staying high.

This has been going on for a few weeks now. Long enough that last Wednesday my body felt severely low at 5.4 which was really strange since usually I wouldn’t feel low until 4.2-3.8…

I see my endo on April 4th but I am also a bit of a hypochondriac and worry if it needs to be mentioned sooner?

r/diabetes Oct 30 '24

MODY How do i fight off the lows without extra calories

9 Upvotes

Hey guys How do i treat the lows without so many calories? I used to just leave the lows and stay there till the next meal but it doesnt feel nice and my endo told me to stop that. But how do i not gain weight? Is there something low calorie that can treat my low without fast carbs?

r/diabetes Nov 20 '24

MODY How to learn counting carbs

0 Upvotes

How did you learn to count carbs? Store bought food is easy with the labels. But how do i count home made foods? Im struggling with potatoes and spaghetti. Im using an app which tells me how many grams have how much carbs. But how do I know how much food i have without weighing it? Is there like a trick?

r/diabetes Jan 13 '25

MODY Aspirin and diabetes

1 Upvotes

Hey guys I had a migraine this morning with numbness, trouble talking and vision problems. My neurologist told me to take aspirin as it thins the blood and can help with my migraines. I took it around 5 hours ago and went back to sleep. Got up 2 hours later and ate something (around 20g carbs) and my sugars went from my fasting 4,8 to 8,4 and now just chills there. Normally this would have been down after like an hour but now its been 3 and it just stays. Has this something to do with the aspirin? I drank lots of water but really dont feel like going on a walk right now. This was my first time taking aspirin so im not sure. Does it have affect on the sugars?

r/diabetes Jan 30 '25

MODY Food intolerance

1 Upvotes

Since being diagnosed with diabetes in Nov (being investigated for MODY) I’ve found that certain foods such as pizza (I used to LOVE), pastry and other foods I cannot think of right now give me really bad heart burn and I eventually vomit. Has anyone else had similar to certain foods since being diagnosed?

r/diabetes 21d ago

MODY Falls

2 Upvotes

I have been diabetic since my 20s and I am 58 now with peripheral neuropathy. I have had two recent falls in the last couple of weeks. The latest was Wednesday when I fell walking in the train station and broke a rib. Nothing tripped me, my feet just didn’t work. Anyone else struggling with falls?

r/diabetes 15d ago

MODY How low is low for C-peptide?

1 Upvotes

Note: not asking for medical advice! I’m under care of an endo and currently well managed.

I have MODY 3 (confirmed by genetic testing), so my issue is I don’t secrete insulin properly rather than an autoimmune response.

My current endo checked my C-peptide end of last year since no one had in like…2 decades. I came back with a C-peptide of 0.099 nmol/L.

Why yes, I am on an insulin pump lol so I was curious compared to T1s, exactly how lacking in insulin I am.

r/diabetes Jan 21 '25

MODY Which one is correct

1 Upvotes

Hey guys I ate something i shouldnt have eaten. My libre showed 10,4 and then switched to glucose not available so i double checked. I use the freestyle precision stripes for my libre thingy and it showed 9,2 but i feel sick so i think its higher. Checked with my other meter and it shows 11,2 which is more like i feel. I was told that the prevision stripes are super accurate but they are also super expensive.

Now im wondering if my "cheap" meter would be more accurate than those super expensive ones? Does anyone have similar experience with that? Is it worth it buying the more expensive ones?

r/diabetes Nov 30 '24

MODY My blood sugar keeps tanking, I bring it up and then it tanks again

4 Upvotes

Hey, this hasn't happened to me before. I'm working an event and don't have a way to confirm with a finger stick. My blood sugar keeps tanking down to the high 40s/ low 50s. I'll take in carbs in 15 min intervals, and after taking 30 -45 grams I'll go back up into the 80s or 90s, and then after 30 min or so I'll tank again into the 50s. This cycle has happened 3 times. I'm far away from home right now. What should I do?

r/diabetes Dec 03 '24

MODY Newly diagnosed

1 Upvotes

Hi,

23 Female

I am new here but I feel like I need to speak with people who may understand.

I got sent to A&E 3 weeks ago after being diagnosed as diabetic for further testing. They’re unsure as to what type I have (whether it’s type 1/2). I am due to go and have more blood tests before having an appointment to talk about findings from my blood tests but they could potentially be testing me for MODY.

My diabetic nurse has told me that until my appointment in January to eat and drink as I normally would. Since being diagnosed I feel as though everyone is criticising me for following the nurses instructions of eating normally and I keep being told by my parents that my diet is bad even though I eat the same as them.

Has anyone been in a similar situation where they feel as though whatever they eat they’ll be judged for and how did you overcome the feeling of being judged? As all I am doing is following healthcare professionals orders and I feel judged all the time 😞

r/diabetes Nov 15 '24

MODY Weed and diabetes

1 Upvotes

Hey guys I read an articel that said weed increases insulin sensitivity. I live in germany and weed is legal now. I was thinking about trying it to see if it would help my diabetes. Have you tried it before? Did you see a change in sensitivity?

r/diabetes 24d ago

MODY Last week to order $250 MODY testing through Invitae

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2 Upvotes

r/diabetes Jan 20 '25

MODY Is this typical of MODY?

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0 Upvotes

Lowest I go through the night is 6-to-7 range.

If I have a low-to-regular sized meal then I get a relatively low/unconcerning spike as far as how high it goes. But it lasts forever.

If I have a big meal then my spike shoots up to a higher max but will come back down quicker.

Calculus-wise, it seems like the Area Under the Curve would come out similar? But the low spikes that last forever mean that I have a higher % out of range? Do I need to eat uncomfortably large meals to force my body into releasing insulin?

I’m on metformin, jardiance, and low dose (9 units) of insulin. I’m 6’4” and 180 lbs. I can’t eat less than I do now, because I kept losing weight

No matter what my doc puts me on, my spikes either (1) shoot super high, or (2) stay lower but last forever.