MODY - A "Rare" Form of Diabetes
Вставка
- Опубліковано 28 вер 2024
- MODY makes up 1-2% of all diabetes cases and is a completely genetic condition. In this video PA-C David Doriguzzi explains what MODY is and what causes it. We talk about how to know if you have MODY and when to suspect it. Lastly, we discuss the four most common forms of MODY and how each type is managed.
If you'd like more insight from a person living with MODY, check out the channel "Tasting Positive". You can find it here: • Video
I have Mody2 diagnosed for 20 years. I refused all drugs and insulin. My younger daughter is also Mody2 and the older one is healthy. I have to make exercise every day and control diet, no alcohol. In this way I have reduced weight - 20 kg. But when i travel and no exercice and bad diet, some wine, the weight increase immediatelly. My doctor said I am in perfect metabolic condition, no cholesterol, everything working perfectly, just sugar elevated and ferritin too. And I am very strong from point of muscles, muscles are growing quickly when i go to gym. Maybe because sugar is disponible for muscles work. So, I look like Xena😊. Mody 2 keeps me in discipline about my diet and exercise, without Mody I have never been so well organized. So, diet, exercice everyday, sleep, watter drinking. Reducing stres because cortisol increases glykemia.
was your parents diabetic?
Good for you 🎉
MODY 2 here as well. :)
I am Mody type 9. I was diabetic since age 16. I was misdiagnosed as type 1 for 5 years I was on insulin. Now I do well on metformin. Could you please explain how rare mody 9 is ? Also any kind of treatment which would help me.
Thanks for the informative video !!
Anche io , italiana 45 anni , ho il diabete mody 9. Attualmente non ho trovato alcun nutrizionista che possa aiutarmi e mi sto curando con metformina
I've been diagnosed with mody after 12 years after initial diagnosis of type 1 and type 2 later on. All this time I had my diet and I did ignore doctors(and medication) while controlling my sugar levels. So I'm still doing fine with 6.1% of A1C. I am skinny person so I'm not likely type 2 either.
Very nicely explained
I have this, my parents had done expensive tests on it, one of my doctors had no idea what it was, shape wasn’t fitting.
I'd like to know more could u indicate a paper/articles to read. Thank you !
Hi, I've been diagnosed Mody 6, in 10 years I've only found 2 others. There is no record of any diabetes in my family, I was diagnosed as type 1 at 5 months, now 63 with no long term side effects. The only time I don't require insulin if when I eat raw organic fruit on an empty stomach. I'm frustrated that there is no information out there relating to MODY 6.
I was diagnosed with MODY 2 20 years ago. Recently had a coronary artery scan (I’m now 51) which wasn’t exactly good.. I have plaque build up. The cardiologist suggested it was from the MODY 2, but after listening to this I’m unsure. Any other MODY 2 people have heart stuff going on?
Im 45 and MODY2. No problems in that area.
Mody is also an autoimmune disease like type 1&2? Cant be cured? Is there any special care we need to take? What is the best available medicine /treatment?
Only Type 1 is autoimmune. MODY is completely genetic and can not be cured. Treatment depends on which type of MODY and is discussed toward the end of the video.
I'M a mody diabetic patient(HNF4A) is it curable pls reply
We unfortunately don't have a cure for MODY. Thankfully, though, it can be treated.
Mody 8 olan ve bilgi verebilecek birisi varmı ?
"simple genetic tests"... that cost $1500 and your insurance won't cover. Yay.
So my partner assumed she had MODY after watching this video, and her sister got diagnosed with MODY 3, so naturally she figured she had MODY 3 also, it made a lot of sense. Her genetic results are back today and she actually has MODY 1 - I'm unsure if this is characteristically normal of a parent having diabetes or not, but as far as we know neither parent has diabetes.
Wow thank you so much for this video! I would love for more people to talk about MODY because it feels really lonely not being able to talk to anyone who knows what it is.
I’m sure that I have MODY and that I’ve just been misdiagnosed with type 2.
I’m 28, skinny, eat almost no sugar and no carbs and more vegetables than anyone I know. It just didn’t make sense that I was type 2 🙄...
does anyone know how to get a proper genetic testing in Canada?
Thanks for your comment! I'm not sure what labs would offer a monogenic diabetes panel (which is the test you would need) in Canada, but I'm sure it's available. Definitely ask your healthcare provider about it during your next visit. Glad you enjoyed the video.
I am doing my PhD on MODY based in India and found this presentation very useful. Thanks
That’s great!! I’m glad it was helpful.
is it common there
can mody happen to patient whoes parents are not diabetic
Thank you for researching
I liked the intro part ... With circle, square and triangle 🐨
Thanks for your feedback. I'm glad it helped demonstrate the idea.
I was diagnosed with type 2 when I was 14, but I wasn't obese, just on the heavy side. They gave me pills and told me to exercise. I struggled with it for years. When I was pregnant, they put me on insulin and I finally began to have control. So after my babies, they tried to make me take Metformin, but I couldn't handle the side effects. Now I'm 45 on a pump plus ozempic and my A1C is 5.7. No high blood pressure, no high cholesterol. I just have a hard time controlling my weight.
You don't have to be obese to get Diabetes. Being heavy is just as dangerous.
Just got re-diagnosed today with MODY after being diagnosed with type 2 for the mast 12 years. I know it's the same treatment, but it feels better being a lot more accurate. Video was very helpful.
It isn't usually the same treatment. I was also misdiagnosed and got put on Glicazide once they discovered it was Mody 3
thin people diabetes need more research
Got diagnosed with MODY 1 this week and great to watch something like this and find out a bit more!
My daughter was diagnosed with MODY 2 this year. So grateful for doctors like you who know this even exists!
Expect changes with puberty! Keep an eye on it.
Thank you for another topic you made me understand so easily. I look forward to your talk/video on LADA.
It's on the way! :)
I was in a ward round and then realized there is a lot I needed to learn. I'm loving my rotations 💯 These videos have been helpful
Thanks for your feedback! Glad they’re helpful
I have MODY, but I don't know what type. every time I ask, most doctors don't believe in MODY. I've went to the ER, and they have to do a blood test every time, and they still don't know how to treat me.
what the actual fuck. I think i got type 5. I have everything. Like everyone in my family has diabetes, also a hung family history of "polycystic kidney decease". I was diagnosed with type 2 at 23. Was on only oral med for 10 years and this year I have been needing insulin.
I was just diagnosed with MODY, I am turning 18 soon and this video was really helpful to learn more about it. Thank you so much!
My doctor said he would order the test for T2 MODY if I can tell him exactly what to order. Can you share the test name or the ICD 10 code? Thank you!
I used insulin for 8 months then all the sudden my pankreas started making insulin again for a week and I thought I had mody but they say it’s Lada 😢
Interesting to hear of the differences of MODY types. My endocrinologist suspects I have it and I got an appointment scheduled to test for it. Very much hoping for MODY-2
Thanks for sharing your experiences! Glad you have a provider that is considering all possibilities!
You are lucky! My daughter's genetic test came back today. We are officially MODY 2. It has taken 15 years and 2 kids w elevated blood sugars to get an official diagnosis.
Yeah I have a test coming up aswell. Super stocked for it. Image being healthy again. I'd join the army here in switzerland. I think that'd be fun.
Edit: Also I didn't have any antibodies until after many years after my diagnosis with diabetes type 1.
I have seen sources that say it's maybe more like 15%. We just get misdiagnosed a lot.
If you have had your pancreas removed except for the head and have not felt great since even though you are taking insulin would you be a candidate for a mody designation. doctors just say type 2 , take insulin. I always felt there was something else that could help. Grandmother was on insulin as far back as I could remember.
Look up Type 3c diabetes (Pancreatogenic Diabetes), see if it is a fit. This may occur after physical damage / disease of the pancreas (eg pancreatitis, surgery /resection, pancreatic cancer, etc). An excellent video on Type 3c is at NPAIHB, titled "Tribal Diabetes ECHO: Pancreatogenic Diabetes". Posted 27 Jan 2021, by Dr Carol Greenlee.
7:15
Thank you for this! I've just been diagnosed with diabetes and waiting to find out if it's MODY. Only discovered because I had diabetes in pregnancy with my second, and started monitoring in 1st trimester with my third. Unfortunately I lost him in 2nd trimester. I kept monitoring and my fasting levels went up🤦♀️ but if I hadn't had a previous high risk pregnancy and been worried, none of this would have probably been discovered.
I loved this video so much I had to subscribe. I admire your ability to make things look simple! Congratulations and thanks for your work. I hope this can help more people understand this type of diabetes just like it helped me.
Thanks so much for your feedback! I'm glad you found it helpful.
I can trace my diabetic lineage from my father's side. My great grandpa was the first. He lost both legs and died at 63. Next was my grandpa diagnosed at 54 yrs old who died in 2003 at 81 yrs old. . My dad who is now 74, 2 Uncles ages 55 and 65 and an Aunt at age 70 are also T2 diabetics like me. I've had symptoms since 28yrs old but I only started medication when I was 30. My 3 siblings who are also in their 40's are with borderline FBS/A1Cs (6 + mmol/L). It's my young nephews and nieces (1, 2, 6, 10, 11 & 15 yr olds) who worry me. I fear they might get it too young. They don't go out much to play. They sit and lie around all day with their gadgets during day off from school. They would choose soda over pineapple juice, fries and burger or hotdog over bananas/apples :(
Getting people on a healthy path early on is often a challenge. I wish your family the best and good health!
Pineapple juice and soda are basically the same. Fruit juices are not healthy food. Eat the fruit, don’t drink it.
Anyone know how much it costs to get tested for MODY?
Hello, my 4 year old granddaughter, daughter and I just tested positive for MODY 4 and we can’t find any information about it. Her A1C is 5.9 and her blood sugar ranges from 45 to 145 in a day. Can you point us to some information? Not many Drs are aware of this. Thank you!
Thank you...it was really helpful and to the point
I'm on pins and needles for LADA. Quick question, have you done a video on prediabetes? or did I miss it? Prediabetes is what I'm working with at the moment. I'm in a clinical trial for prediabetics dealing with obesity. Just love your videos please keep them coming.
I haven’t done a pre-diabetes video yet. But it’s definitely on the to-do list! I would love to hear more about the pre-diabetes study that you’re participating in. I do clinical research at my office as well. Thanks so much for your feedback. Glad you’re enjoying the channel!!
Hi! I was one of those people who watched the video and went to look into genetics... To find out about MODY. Thank you
That’s incredible. I’m glad you found it helpful.
Is the reason why i feel so tired and fatigued after eating? I get heavy headaches for 2 hrs after eating and my doctor said its Mody diabetes. Should one avoid rice totally? I actually feel better if I don't eat at all.
Depends on your MODY type. I am a mody 2 with 2 mody 2 girls. We still eat rice. I do wear an insulin pump to ensure my a1c is under 7 since I occasionally need prednisone.
I've been misdiagnosed as a type 1 diabetic and i had been on insulin for 10 years. For the last year I started managing my diabetes with a low carb diet and I was able to get by with no insulin if I didn't eat much carbs that day. Out of pure coincidence they test me for MODY and It turns out that I have MODY 12(abcc8). I have been on glibenclamide for a month now(120mg a day an extreme dose i believe i was taking 23 pills a day by doctors advice) and my blood sugars never went down from 250-300 despite the medication. My A1c was 6.4 before pills and I was using minimal insulin. So i decided to see another doctor and we decided to stop the pills. Now my blood sugars are better without them. Do you have any info on MODY 12 and why that happened because I cannot find much on the internet and I would love some info. Thanks your videos are awesome!
Thanks for sharing your experience! MODY 12 is super rare and I unfortunately don't have any specific info about it other than the gene affected. But I can tell you that it happened in the same way that all other forms of MODY- somewhere in your ancestry there was a one mutation that got passed on to future generations.
Hello, I also have MODY 12 and it meant my daughter was born with congenital hyperinsulinism. It does seem pretty rare
Hello there. My dr suspects I have mody diabetes but I don’t have health insurance to get tested. Is there any place I could get my own genetic testing? Thanks. She told me it will be close to $1500 out of packed to get tested thru her.. I am hoping I could find cheaper options. I was tested for lada and came negative
My son was diagnosed with type 1 at tge age of 10. Insulin does not work at all. He has signs of insukin resistance and we have history of type 2. He never gets ketones although his glucose is very high at times. Could tjat be MODY or type 2
Oh my Lord, thanks for this valuable information. No Dr. Have ever told me this.
Glad you found it helpful. Best wishes.
My sister got diagnosed with MODY 2 but she had bit more severe. Her HNA1C became like around 20 her eye sight worsened her blood sugar level became in 500 just in the tender age of 16. And she’s currently in 16 units of insulin with all the tabs. he saying type 2 MODY needing no treatment is utterly false
i must talk with my physican. I was diagnosed with MODY a decade ago (and I take Sulfonylureas) but I never got the type, just MODY.
Plz HELP ME,I live in Kansas my 3 daughters
Have some test about diabetes 1 or 2
and 2 if them its under "treatment" now
So they are negative in type 1 and even type 2
But they refuse to do the test for MODY In 2 of them,bc insurance suppost to be don't agree,bc it's super expensive.
Where we can get the help? Please help me
How do you decide to order a monogenic diabetes panel? I am sure the cost is an issue with a lot of patients.
You have to get authorized by insurance. It takes a lot of advocacy by your physician. It took a while for me to authorize it. It was easier to get my daughter authorized
It is also possible to have MODY where your parents do not have it..its called De Novo..if I am correct..also, the awareness of MODY even amongst the professionals is very sparse because of the rarity of the patients
Thank you so much this video was so helpful I might have Mody as well I have to see genetic specialists to get tested and get diagnosed
Hi Dr. Have a doubt that if gad is negative means is diabetes is not type 1. My daughter is 2.2 years old she recently diagnosed diabetes. Now a days her Suger level is really stressful almost good,some times low, some times high.
Dr suggest me to mody and arc test
My diabetes has never followed any pattern. I never "fit". I was diagnosed as type 2 when I was 13 years old and underweight. Endo says I have mody but have never tested for it.
I seem to be on a gradual decline. Medications seem to stop working for me.
Please give information about mody neuro D1 varient
If I understand your question correctly, you were asking about MODY 6. If that's the case, it's incredibly rare and only a handful of families have been identified that have it.
I have MODY, Thanks for helping me understand although I'm a Pre-Diabetic. I was diagnosed with MODY type 7
Thanks for video, I'm a midwife trying to learn more about diabetes so this is great. Just wanted to compliment you on your cardboard box prop - brilliant
Can Mody cause persistent lower back pain?
Thank you very much for this video!! It's motivating to know not to be alone.
Thank you for making this video. I was put on glipizide and I have HNF4A. It brought me down to 50, even after having juice and sugar. It was a nightmare. Turns out HNF4A is very sensitive to sulfonyureas (sorry if I spelt that wrong.) I lost over 30 lbs and the type 2 “remission” I was expecting never came. I was only 26 at the time. After the sensitivity to glipizide, my unusual lack of change in A1C after weight loss, and my sister being diagnosed with type 2 at just 116 lbs- we were tested. It’s been a huge revelation. With these videos, I feel like I have an at home doctor through my computer that I can access whenever I have a question or concern. Keep up the amazing work.
Thanks for sharing your story, Michelle. If you don’t mind, I’ll add a link to your channel in this video description in case anyone wants to get more perspective from a person living with MODY. (I know you’ve discussed it in some of your videos, but didn’t want to share anything personal about your health without getting your permission first).
@@sugarhighchannel of course! I don't mind at all. I've actually already included the link to this video in my video about diabetes and intermittent fasting. I will be making more videos on MODY (from a patient's perspective of course) I will definitely be linking this video and others to my channel as well. I think what you're doing for us as patients is so honorable and effective. Diabetics are often exploited and are sold ketogenic products and programs by "reputable" doctors who don't care about us, or our health. I really appreciate this video and I've sent it to my family members who also have MODY. I can't wait for your next video.
Also- another awesome video topic that would be super helpful for both me, and other diabetics I'm sure- is how to decipher which "KETO" products are ACTUALLY safe. I fell into the hype very early in my journey and purchased keto brownie bars that brought me all the way up to 200. Keep up the incredible work!
I was put on glipizide for roughly a week and I’ve never felt closer to death than I did after taking that godforsaken medicine.
Yes thanks you are amazing!,!!!!!!!
Thank you! I'm glad you found it helpful!
Is it possible to have Mody if the c peptides test is normal .
your info is great but music in background is distracting
how many type of diabetes we know till date?
Is it true that MODY diabetes not is being after 35 years of age
Many thanks for your videos from Madrid.
Dr which Lab test we can ask to check Mody?
Both of my kids have mody 3 thank you for this video
Thanks for your comment! Glad you found it helpful
Keep an eye out for yourself..if they have different dads, it's likely you. It may show up later.
I have mody 1
Thank you
Very good
Excelent video 🙌
no info on LADA?
Hello dr what is the name of this mody panel test ?
Hi. It’s called a Monogenic Diabetes Panel. (and just to clarify, I’m a PA, not a dr)
amazing
Thank you! Cheers!
Stop eating carbs and sugar and exercise. And fast 2-3 days every week.
That's good advice for all of us
Awesome advice but that doesn't change my diagnosis. I still have elevated fasting bloodnsugars. Yep
@@LadybeetleMaddox You have too much fat in your liver/pancreas. Go on a 100% all-plant diet for a month, no carbs/sugar, and exercise like crazy. Drinks loads of water too. Eat OMAD if possible. Once the fat is removed from your liver/pancreas they will start to work normally again and your blood sugars will come down.
I do have MODY, even doctors havent heared of this type and want to classify me of type 2. I sarted with injections because my sugar was 17, then with pills. My doctor told me it is possible to live without any medication if it in normal range
this was exactly my situation. I am MODY type 2 and MODY type 7, and most doctors I have met with also havent been aware of these.
In 2004 doctors diagnosed me a Mody2 diabetes. I am now 29 and I live a totally normal life, my vision is perfect and I feel good. I work out a lot though. Then my father was also diagnosed with the same type of diabetes, so yes it is genetic.
Thanks for sharing your experiences. Glad you're doing well.
How long take the test results? In Kansas Dr says we have to wait 4 months
@@friducha7189 Mine took even longer
What is the test name to diagnose mody and its classification pls suggest
@@hanan2948 I have no idea. Everything was done by my doctor so go and see endocrinologist in your area.
MODY 4 here🩵