Hello all, I am excited to share my news with you in hopes that it might help someone else who is confused about their diagnosis not correlating to how they present. I spent the last five years diagnosed as at first as a type 2 diabetic (very active weight 120lbs ht. 5"4) placed on pills, byetta, januevia, metformin and glipizide, I felt terrible, had many lows that lasted for hours, lost weight and felt dizzy and out of sorts for those 3 years!!! THEN I was diagnosed as a type 1 in the honeymoon phase, my c-peptide showed I was a type 2 and my glipizide was increase to 40mg daily!!! I felt drunk all the time, dizzy and could hardly function. I cut my dose way down and felt better, and may I remind you that my glucose numbers were higher with the more meds I used. I later found out that the doctor performed the c-peptide test incorrectly. Then I changed doctor’s were I was placed on Byetta, wow talk about severe, severe abdominal pain, doubled over with blood in my stool. Seriously I thought I damaged my liver! Called the doc to tell her my stools had blood then were completly pale in color but she said she was not concerned!!! I asked for blood work to check out my liver but she would not do it. So I quickly stopped the Byetta and my symptoms went away. Then my fourth Endo diagnosed me as a type 1 placed me on Lantus and Humalog. Well one thing I can say is that I picked up the weight I had lost (119 to 109lbs!) Thought I felt better, then almost a year of high’s and low’s and feeling so out of sort’s/nausea/popping sugar tabs all the time. That was a very rough several months, it took something away from me, my self. So the second year on insulin I did a little better but my menstrual cycle was so irregular, I had bad PMS, which I have never had before. Every month during my period I would get severe hypoglycemia symptoms and came close to passing out, this became a routine monthly event, although I never did pass out, the feeling like I was going to die (with a normal glucose number) was really not a fun thing to endure. Yes I did talk to all my doctor’s about these symptoms and that I never fit any diabetic classification. When I told one doctor that I was losing weight on Januevia/Metformin and felt so hungry all the time, my hair was brittle and breaking, she said to me. “that’s just you”!!! I told another doctor that I got severe chills and felt very whoozy when I bolused insulin (with normal numbers) she and her nurse told me to stop, calm down and drink a glass of water!!! You know, I am a critical care RN, no anxiety disorder ever, no depression ever, never a hypocondriac. So just around 2 yrs on insulin, I found out that my niece who was diagnosed at age 7 supposedly in DKA or leading up to DKA on insulin until she was genetically tested at age 15 because she had normal A1C all along, had very little and a lot of time no need for insulin, and low and behold she is a MODY 2, I then spoke to my doctor and told this to her and she told me that I was a type 1 or a MODY but the treatment was the same, This is a Stanford hospital MD, and she specializes in diabetes. A few months later I found a website from the UK that explains what a MODY 2 is, I read it, and contacted them, just got my genetic results last night and yes I too am a MODY 2. What is MODY 2??? well it is not diabetes! It is called congenital hyperglycemia. It is where the glucose sensor Glucokinase (which determines when to give your body glucose or insulin). Is genetically mutated on this gene CGK or Glucokinase that causes the sensor to be triggered off at a little higher glucose number i.e 120’s to 130’s, it varies but I am told that a glucose fasting can be up to 140’s. So your body responds just like everyone else, I get glucose when I need it, and I get Insulin when I need it. But the little higher number trigger’s off the sensor. THIS IS NOT DIABETES. Most doctor’s do not know about this or they are confused and do not have enough information to feel comfortable to not treat this. There is no treatment for MODY 2, they have the same risk as everyone else to get type 2. There are actually eleven different types of MODY, the most common is MODY 3, which does require treatment, but my understanding is that no MODY needs insulin, they treat with a type of pills called sulfonyurea’s such as Glipizide at a low dose. The other MODY’s are uncommon and a handful on them have only been identified in a couple of families. MODY 2 is the second most common and most people that get diagnosed find it on a routine blood test, remember these people have MODY 2 from birth! Pregnancy however it comes out and a lot of times they do need treatment, But after pregnancy they do not. I wish I would have know about this, my deterioration with my health, body, emotionsl has declined since being on these meds, and I do not get these years back. I have been off my insulin pump for almost a month and my numbers are one teens to one forties, no matter what I eat. My numbers were high on the insulin. Please if you do not fit the bill like me, thin, fasting numbers always in the 120 to 130 range, A1C never higher than 7.2, , negative GAD antibodies, normal range c-peptide test, etc. and other family members that fit that description, please be persistent, my doctor did not test me, I did that on my own. Come to think of it, they thought I was diabetic when I was younger around 12, they did a lot of blood test back then 1982, and said I was a bad eater. Now I know that I am not crazy and will look forward to a much improved quality of life. I feel blessed to get the right diagnosis. Denise
Wow, what a relief this must be. Jenny Ruhl is a MODY, you may find her information helpful http://diabetesupdate.blogspot.com/ and http://www.phlaunt.com/diabetes/. I have to tell you, MODY is diabetes, but you won’t treat MODY-2 like type 1 or type 2 necessarily. Jenny argues that a low carb diet works very well. She also uses low levels of insulin to keep her fastings down.
I also suffer from similar symptoms. I’ve had diabetes for years, but have never been able to normalize my fasting numbers. According to Jenny, key things that suggest MODY are:
Normal or near normal weight
Low CRP
History of gestational diabetes
Relatives with adult onset diabetes
Drugs that affect insulin resistance don’t help
Dumping glucose in your urine at low BS (perhaps 140 mg/ld) (MODY-3)
Elevated fasting glucose
As I said, I cannot for the life of me get my fasting numbers down. I’ve reduced my rise after meals to basically zero with a low carb diet, but I walk around with a fasting number like yours all day so my HbA1c is elevated. I’ve never been able to get the genetic test ordered. I had to argue for nearly two years to get the GAD test, which came back negative.
So here I set, I take three pretty useless type 2 medications. I just switched from Byetta to Victoza, so I’ll see if that does anything for me. Jenny Ruhl seems to indicate that Byetta did help her, but it was too strong. You may find that Byetta at a much reduced strength is useful. Read up on her adventures (http://diabetesupdate.blogspot.com/2008/12/new-info-on-how-to-use-byetta-for-mody.html). In the end, if I am MODY-2 like you then there really is not much to be done except eat low carb.
Thanks for posting your story. If you have pointers to where you got your tests and things like that there are others that would really benefit from your experience.
What a journey. Thanks for posting. Kudos to you for seeking answers!
Wow Denise! This is quite a story! I am glad you finally got it figured out. It is so sad though all we have to suffer though to get it right. I read that there are actually possibly hundreds maybe thousands of types of diabetes but they just don’t want to bother with all the testing to accurately diagnosis and treat each individual so they lump them into the more generic categories that we all know of Type 1 or Type 2. It is very sad and a lot of us suffer because of their ignorance. It is also sad that it is hard to get tests ordered and done. I think they should just test for everything right off the bat and do it right the right time but again - laziness and I think some of them just don’t care.
Hi Denise,
Your profile just popped up on the Home Page so I read your story. I learned a lot about Mody so I appreciate the fact that you shared this with all of us. It sounds like you had such a difficult time! How are you doing now? Joanne
Where did you get tested at? From my understanding it is very expensive. I want to get it done. My endo thinks I have MODY 2 also. That or MODY 3
I refer you to the Kovler Diabetes center, U of Chicago. They are doing research on MODY, and test people for free if they qualify.
MODY stands for Maturity Onset Diabetes of the Young. They did not know much about it when it was named, you can get first symptoms up to about age 50. It is a single gene defect, unlike type 1 and 2 which are multiple gene defects. They said I am likely MODY 2, as my pancreas does not produce much insulin until my glucose gets to about 160. I did not fit their profile for free testing though.
got it on the second try, long link to post.
-Lloyd
I contacted Kovler. My symptoms and age do not make me a priority for the to test. I’m at the back of the line.