Diabetes (outside normal parameters)- Am I a mystery diabetic? :)

First of all, thanks so much for reading this & helping! I really appreicate your time. I’ve read through previous posts for a long time but just joined Tu.

My name is Danielle. At 23, I was denied life insurance for a fasting of 129. I followed up with my doctor who didn’t pursue this much as I was asymptomatic. I wasn’t shocked- my mother has maintained the diagnosis of “Borderline DIabetic” for 42 years. At 22, she was hospitalized after a routine urine test revealed ketones. She was later released 24 hours later, and was told that birth control was to blame. However, her A1c’s have always hovered in the high 6’s. Doctors have wanted to put her on Metformin, she not taken this option, preferring to control with diet & exercise. She has always been small & thin. She also has Graves disease, hyperthyroid. Her sister sadly passed from MS. So there’s an autoimmune theme.

In 2008, pregnant with my first child (I was 33), I failed the 1 hour GTT with a 212. Maintained with strict diet & exercise. I started at 125 pounds at 5’5", gave birth at 138 pounds (this is the most I’ve ever weighed). At 41 weeks, our daughter (who we jokingly call Big Mak as she’s always been small!) was 6 pounds, 3 ounces. Her glucose at birth: 54.

2009- Follow up A1c after birth: 5.1. Passed 2 hour GTT. Still getting fastings in the 110-120’s. Asked to be put on Metformin as I thought this would help. Started on 500mg, no effect to fastings but at least I had peace of mind I was doing something.

2010- A1c has jumped from 5.1 to 6.4. There’s a logical reason for this- We’ve moved back from Japan (my husband is US Navy Medical Doctor, Family Medicine, was stationed in Japan for three years at a small clinic, Marine Corps Air Station Iwakuni Japan for my Marine/Navy friends!) to the United States & I’m eating badly. Also, I’m not able to get pregnant again. I don’t “fit the typical profile for PCOS” but Metformin is increased to 1500 mg. A1c falls to 5.9 (yay!).

2011- June, early miscarriage. July, pregnant! I’m now currently 20 weeks, woohoo!!! :slight_smile: Metformin is stopped at 12 weeks. At 14 weeks, I miserably fail 1 hour GTT again with 198. I finally get to go to my first class with a nutritionist! :slight_smile: I’m very excited. She says, “Wait, you look like a type 1. You’re not Gestational, you’re type 1, did you know that?” I reply, “I don’t know what I am!” She runs tests (yes, I love her). Here’s what I got as of September 2011:

Antibodies GAD, ICA, IA-2: Negative
Fasting C-Peptide: 0.5 (never been on insulin)
Blood Glucose at time of test: 90

My Maternal Fetal Medicine Specialist & my savior of a Nutritionist labels this as Diabetes (outside normal parameters) and says I’m probably 1.5 diabetic. I’m started on Glyburide 5 mg at night for my very stubborn fastings. It’s helping!! I’m actually get fastings under 90 for the First TIme in My Life!! :slight_smile:

So, I’m asking you kind soul to let me know your thoughts on my situation!!! What would you call me? Can you refer me to the right groups? Am I more MODY than LADA? I’ve never seen an endocrinologist, but my MFM doc promises that he’ll refer me after my pregnancy (baby’s doing great!!).

I’m eager to fit in somewhere. And I’m eager to know more for my beautiful daughter & new baby’s sake, as well as for my mother’s! We feel like such outliers. For my mother, if this is a honeymoon period, then she’s maintained it for 42 years! That’s my kind of honeymoon. :slight_smile:

THANK YOU!!! Please let me know what additional info I can provide!!!

Hi Danielle: Welcome! Your story sounds SO familiar, mainly because many women here on TuD have similar stories. You are antibody negative, insulin deficient, and have a family history of autoimmune diseases. I wrote a blog about medical misdiagnosis of insulin-deficient diabetes, read it and see if you can relate to any of it. One TuD member, April, really pursued the possibility of MODY, had the testing done, and found out she has MODY3. I would say the key thing is to get appropriate treatment, even if you are a mystery. Best of luck!

Hi Melitta! I just read it! Sorry, had a busy couple of days. Excellent blog! So well written!!

I’ve seriously considered MODY testing. I’ve written to Dr. Hattersley (UK doctor, MODY champion :)) with my case and he said, “Absolutely, get testing, I think you’re MODY2.” Furthermore, he included an article (“Pregnancy Outcomes in patients with raised blood glucose due to heterozygous glucokinase gene mutation,” 2008, Spyer, Macleod, Shepherd, Ellard & Hattersley) that documented that those with MODY2 (glucokinase gene mutation) who have babies that have MODY tend to have smaller babies (like Makayla, sad to think she has this too). SO, these babies actually need the excess glucose the moms are making. Consequently, different BG target numbers should be used if repeated growth scans are showing a small baby. How interesting is that?! So in this case, MODY testing would actually inform treatment significantly in my humble opinion. He also recommended the Sulfa class of drugs, which thankfully my MFM doc was leaning towards anyway.

The thing is, MODY testing is so darn expensive. And I took the article that Dr. Hattersley sent to me in to my doctor who promised if the baby is measuring small, we would consult Dr. Hattersley and adjust my targets. We’ll see… :slight_smile: Truth is, I’d love to get MODY testing! And I’ll definitely get in contact with April, and see what she thinks. I bet she’d say it was worth it!! And I could definitively say to Makayla and maybe (hopefully not) new baby, OK guys, this is what you have… :slight_smile:

One last question, I promise! :slight_smile: Is there a MODY group on TuD?

THANK YOU AGAIN!! And I hope you’re feeling happy & healthy!!

Melitta, since you have had LADA so long as compared to my situation. Have you had any kidney complications?

Hi R-a-M: Just to clarify, I am not LADA (which is slow-onset Type 1) as I had rapid-onset Type 1 diabetes at age 35. But I was misdiagnosed nonetheless, because of my age not etiology (I was hospitalized in DKA). I have had Type 1 for 16 years and I don't have any complications.

Hi Love2KnowMore: Sorry to be slow to respond! I don't think there is a MODY group on TuD, the MODYs seem to hang in the LADA group. But there should be a group! Maybe you and April should start one? I think there is not a group because MODY is so rarely diagnosed; most MODYs are misdiagnosed. If a MODY is young, he/she will be misdiagnosed as Type 1. If a MODY is an adult, he/she will be misdiagnosed as a Type 2.

I can guarantee you that April says it is worth it to do the MODY testing, and knowing what you truly have can inform treatment. But yes, the testing is very expensive.

You are very welcome, and congrats on such a darling baby!

Hi Melitta!! Thanks so much, you are so wonderful!! Definitely will think about a MODY group!! Oh I know, hard to find others in the MODY category- hopefully someday, testing won't be so prohibitively expensive & more will be able to get tested!! Have a wonderful day!!!

Hello. Read some of your blogs and posts. This fast onset vs slow onset is a little new, but I might be starting to comprehend it. Ok, what are you?
When you are tested/examined , how are you different than LADA?. LADA is different than type 1 This is what literature tells me: Type 1b, idiopathic is. They test autoimmune in nature, and tests for islet cell antibodies will come up negative. People with type 1 B have an insulin deficiency and can experience ketoacidosis (a high blood sugar emergency), but their need for insulin injections typically waxes and wanes over time not Type 1b, idiopathic.
LADA is not regular Type 1 because it has insulin resistance
First time I met the endocrinologist, I was asking questions really hoping here it was 1b, but he pointed out the GAD antibodies and the C-peptide results. (which some flew over my head, as it was all new, but I was asking semi-informed questions like crazy, and taking copious notes)

Do you have the same insulin resistance ( http://forecast.diabetes.org/magazine/features/other-diabetes-lada-or-type-15 ) that LADAs have but typical type 1's do not have?
This summer, here was also hospitalization for Diabetic Ketoacidosis. Our progression to insulin dependence, as far as we where concerned as instantly. Kidney issues where coming on before but never went to the hospital, so the weight of evidence says we probably had blood glucose out of wack, but it just wasn't to a point that it was noticed. So are you saying your 'etiology' is what typical type ones as children get, just you where an adult? Are you saying LADAs have different test results and your body was at a time or has different rules/ways-of-working than LADAs? or are you the same as LADAs in results and living, yours just rapid onset those years ago? I understand them putting you on the wrong medications and treating you as a type 2. Where you heavy then? I sure hope this sounds respectful like its meant to me.

Hi R-a-M: Quite simple, I have Type 1 autoimmune diabetes. I don't call myself LADA because there was nothing "latent" about my diagnosis: I had rapid-onset Type 1, was hospitalized and went into DKA in the hospital. Although I had been athletic and thin prior to diagnosis, I did lose a lot of weight very rapidly prior to diagnosis, so was underweight. I am not insulin resistant, I am just the opposite, I am very insulin sensitive.

The terms get complicated. I don't actually like the term LADA, and it is not a medically recognized term, because it is just Type 1 diabetes. The World Health Organization and the Expert Committee on the Diagnosis and Classification of Diabetes Mellitus never use the term LADA, they state that all autoimmune diabetes is Type 1 diabetes, and that Type 1 diabetes can occur at any age. Almost all the LADAs I know do not have insulin resistance. I think the term "autoimmune diabetes" best describes all Type 1a/LADA, and I view it as one disease (as does WHO and the Expert Committee).

All good questions!

Got to ask this one, you said almost all the LADAs you know do not have insulin resistance. Athletic people tend to hang together, or people with similar tastes, likes, and lifestyles.. Are the LADA people you know generally in shape? Are any of them heavy, as the percentages I have been told of Type 2s, 82% are overweight and 44% of those are obese in reference to Body Mass Index. Of the type 2's I have met in person, that seems to be backed up. (One poster on here, a guy was told by a Nurse specialist to force the test to for type 1, he mentioned that people said he didn't "look the type (of a type 2). He did get testing, and he was reclassified (autoimmune) Type 1).

Hi R-a-M: I sent you a personal message in which I went into more depth, but I'll briefly answer here. My LADA pals range from extremely thin to "no longer at fighting weight." Most are thin to normal weight, and the thin to normal weight ones do not have insulin resistance. Few love exercise the way I do!

I'm sorry I missed this post. I am perhaps a kindred soul. I was diagnosed in 2005 as a T2, still diagnosed as a T2. I had apparently had high fastings for some years, but the doctor never bothered to tell me. I have chronic impaired fasting blood sugars. I followed a strict diet, I tried all the drugs, eventually on three drugs. I was able to get my A1c down into the low 6s, but that was it. My fastings were 120-140 mg/dl. I got mostly no help from the doctors, as along as I didn't end up in the ER, they thought I was doing fine. I looked extensively into MODY as a possible diagnosis. Hattersley and his group at Exeter are the best in the world. Their testing is cheap compared to other sources and some insurance plans have been known to cover the testing. I suspect I am MODY-2 (GCK), which sounds like your potential diagnosis. The hallmarks of MODY-2 are higher fasting and a "delayed" insulin response. By delayed, I mean that your body won't generate an insulin response to meals until you reach about 180 mg/dl, whereas a non-diabetic would generate insulin at like 120-140 mg/dl. So I ask you, during your OGTT's, did your blood sugar return to fasting levels within 2-3 hours? That suggests a similar "delayed" insulin response.

And finally, having a child with low birth weight. MODY is autosomal dominance meaning that your child has a 50% chance of also being MODY. So did you have a low birth weight yourself?

In the end, I was unable to get any doctor interesting in providing a detailed diagnosis. I basically got laughed out of the office (and this includes endos). In the end, I took matters into my own hands and started insulin. I continue to follow a strict low carb diet. My insulin regime is heavily weighted towards my basal, I am currently taking about 50 units of basal and 15-20 units of bolus each day. With insulin, I've been able to essentially normalize my blood sugars. I still have to watch my carbs since I can eat a single piece of bread and end up > 140 mg/dl at 2hrs unless I bolus precisely.

ps. And I also measured as having low insulin production, not as low as you, but my fasting blood sugar at the time was 131 mg/dl.

pps. I would be happy to join a MODY group.

Hi Brian/BSC: I really think we need a MODY group! Maybe you should start one? You could make a list of "10 clues you may have MODY," since you have really done a lot of research and can provide good, solid information. April/Anni is writing several blogs on her MODY journey. I think MODY is way more common than the "official" stats, and a place where MODYs/potential MODYs could get answers would be good. Maybe one day there will be a MODY Awareness Week.

Hi Brian/BSC & Melitta!

I'm so very sorry for my delayed response!! I've been on a family vacation for the past 10 days (boohoo me, right?! haha!) & I'm just catching up. I really appreciate your responses!! Brian, I think we are kindred souls!!! Yes, I absolutely notice a delayed response, as my blood sugars easily return to normal within 2-3 hours. I've never articulated it though, I totally appreciate your comment!! Now I know what I'm seeing!! Like you though, I've never had low fastings, despite all I try.

I absolutely agree, I am so impressed with Hattersley! I hope one day to save up for testing. I really appreciate knowing what you're doing with your insulin, I have a feeling I'm heading that way too. Glyburide is really helping so far (knock on wood).

I was 7 pounds at birth (40 weeks). According to the article that Dr. Hattersley sent me, 7 pounds 3 ounces is the cutoff for offspring with the gene mutation.

I look forward to finding answers together BSC!!! Definitely will look into starting a MODY group when things settle down for me!!! Have to head out again for another trip (ugh) but then after that, it's priority one!! :)

Thanks again!!!!!!!!!!!!

"I took matters into my own hands and started insulin."

Interesting, I have never heard of anyone doing that?

How did you go about doing it?

Gomer a curious persona

I talk about it here.

Well, I really went and did it now. I created a Monogenic/MODY group.

Hi! You are not alone! I felt like a freak show for two years before I was finally diagnosed (just a few weeks ago) as LADA. Mine showed up while I was thin, young, and pregnant with my 3rd. She was also small birth weight (5lbs). Every doc that ever saw me said, "weird". I am still trying to understand this diabetes thing, and honestly a lot of the test results and #'s can still run circles around me. Thankfully, there are a lot of knowledgeable people here! I appreciate all the comments and advice I've gotten. The years prior to finally being diagnosed as LADA I used metformin, diet, and exercise to help control my blood sugar. So everyone assumed I was insulin resistant. But since I was finally tested and my test results show that I am no longer making any insulin I am more sensitive to insulin. I've had my insulin doses dialed down twice now.
Good luck on your journey! My husband is also in the Navy and so far I've gotten great care from the Endo's at our military hospital.