LADA, Type 1.5. MODY, Type 1

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1

 

I was diagnosed last January 6th, 2011 with diabetes at the age of 42, "probably type 2", my wife and I could not believe it.

I had been very physically active and in pretty good shape, racing mountain bikes competitively for 4 years, with quite a bit of success.  My wife pushed the Endo to perform a GAD antibodies test to rule out type 1, it of course came back positive for type 1.  A C-peptide test was also done and came back within the low end of normal.

I immediately cut out the simple carbs in my diet and of course quickly improved.  My last four A1C have fluctuated from 5.2 to the latest being 5.9. 

With my next to last Endo visit, I suggested that I was coming up one my one year anniversary,  and was there a test we should do to see how the T1D was progressing.  The Endo said “yeah that’s probably a good idea”, of course my confidence in the Dr. was already low now it was shaken to the core. 

The Doc ordered another C-pep test for the one year mark, and it came back with a number 40% below last year’s number which now places me well beneath the normal range.

During the first 9 months of the diagnosis the Endo had me on two different Type 2 meds, I asked at each visit if I could discontinue there use but he insisted that they would help preserve the remaining Beta cells.  I finally got sick and tired of feeling sick and tired and ceased the meds last September 5th.  This of course doubled my efforts to control my T1D with proper diet and exercise, I was pleased to note that my daily BG’s improved slightly without the meds in my system.

The most frustrating part, other than the Endocrinologist, is the fact that I am so insulin sensitive that with no meds I can still record a blood glucose reading in the forties if I just change my strict diet by adding a mid morning omelet with cheese, green peppers and onions(more protein than normal?).  I also can record a very high for me 175-200 by just having 1 cookie.

I consistently eat the same things, at the same time every day, excluding the weekends when I am at church during my normal lunch hour.  My breakfast is the same with a measured cup of Multigrain Cheerios, ¾ cup of unsweetened Almond milk and a banana.  My lunches are the same 4 days a week with a raw vegetable salad bar, including ¼ cup of egg salad with two single serve whole grain crackers. My dinners 7 days a week consist of a meat protein and vegetables, no starches or rice, ever.  I eat no bread and my “desserts are normally Greek yogurt, cottage cheese with plain cinnamon or peanut butter on celery sticks, yes my diet is that strict.  My mid morning snacks are most often 1 measured ounce of nuts, almonds, cashews or peanuts or such.

I am quite concerned as my C-peptide numbers continue down, I will be started on a long acting Insulin and I will begin experiencing Hypo’s Like I had this past Sunday, right as I was about to head out the door for church.  It came on quite suddenly and I am grateful it happened while I was trying to change the battery in my garage door remote and could not figure out why I was struggling to complete such a simple task (I am an electronics tech).  I did realize I needed to check myself, and while the shaking made it difficult to do I got it done then went and found some yogurt covered raisins and one  little hard candy about 10 grams worth, this corrected the low quickly and I was able to drive myself to church safely.

I was home alone because my wife and son had already left for church before I was ready.  I wonder if I should be pressing my Endo for a CGM as he most assuredly will feel as though I need to transition onto Insulin within the next two visits, 2-5 months. I would like to have had an alarm to let me know I was quickly dropping in BG’s, because I had just finished the omelet, and did not even think about going low after just eating!!.

I am just wondering if there are any other athletes who are late onset Type 1’s who have experienced the conditions I have, and how there Endo treated them?  I am an avid cyclist, both on Mountain bikes and Road cycles. I ride 5-6 days a week, with the top riders in my area, I weigh 139 pounds and am 5’9”: inches tall.  My BMI is 20.5 and I have no fat on me.  I am frustrated, scared and depressed, I sometimes wish that this thing would just happen so I could adjust and battle this thing on solid footing.  I hate not knowing what is going to happen next, and I want to just break down and cry sometimes. 

I appreciate you guys letting me vent.

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It sounds like a challenging situation and I would first find an Endo who is sharp, respectful and can better support your journey!

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I can imagine your frustration. I struggle (emotionally with it every day). I was diagnosed 3months ago at the age of 36 and am not an "athlete" per say but I can tell you that I absolutely love being on the CGM. You should consider "shopping" around for the right endo as well as talking to your doc about getting the CGM.... to see if you are a good fit.

I know exactly what you mean about having those lows, and I too feel extremely scared. My CDE had me try a CGM for a week and pretty soon after that I got one (granted I checked with my insurance to see if it would be covered). I am currently on MDI's but the CGM tells me when I'm getting low (with arrows pointing downward) and I can catch them before they go down too far. The two times I have been low is when I was changing my sensor out. Unlike you I started out with my C-Peptide at an undetectable level. So I have been on insulin from day 1.

I would like to say "hang in there" but I know exactly how you are feeling and frankly that's so much easier said than done. I wish you well.

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I, too had been diagnosed as a. Type 2, only to get frustrated that my A1c kept going higher and higher even with changes in insulin dosing, etc.  I finally found a reputable endo through a colleague at work.  She tested me for everything.  I am actually a type 1, diagnosed at age 54, imagine!  I am now on an insulin pump, and don't seem to experience lows very often anymore.  Need to really count those carbs and dose accordingly.  Get yourself a good endo who you can relate to, and listens to your concerns, that is key.  My A1c has gone down from over 10 to 5.9 on the pump.

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I spoke with the certified diabetes instructor here at work after I posted this morning.  She believes I am being to strict with my diet and wants me to up my caloric intake to compensate for the level of activity that I participate in.

She also made mention of another Endo that I may want to go see, for a different perspective.  I am going to talk to the wife tonight and make a decision about seeing him in the next couple of days.  

Thanks again for allowing me to vent.

I also agree with the CGM, and I am trying to find out what is required for me to qualify thru my insurance.  I have always had hypoglycemic episodes as far back as I can remember, and I knew I could correct it quickly with a little protein.  

This incident on Sunday was so perplexing because I just finished a three egg omlete before it happened.

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C-peptides are a byproduct of insulin being produced.  So if your c-peptides drop like your doctor is predicting, your body will be making less and less insulin and will need the injected insulin.  Anyone who injects insulin is at risk for lows.  Don't stress about it, just learn to test often or use a CGM and always have some type of quick acting sugar on you.

In your situation I would seek out research studies that aim to preserve existing insulin production.  Kind of a cool one I stumbled upon recently showed good results using stem cells to re-educate Islet of Langerhans cells.  www.sciencedaily.com/.../120109211827.htm

You might also check out Dr. Richard Bernstein's work.  He's a longtime type 1 that promotes a super low carb diet to maintain islet cells.  Simiar to the lunch and dinner you're eating now.  Your breakfast is pretty high carb, which is going to take a lot of insulin.  You might avoid cereal and a banana in the mornings when your body is already going to have a higher blood sugar from your liver dumping glucose (it's called Dawn Phenomenon and helps gives your body extra energy in early morning to prepare you to wake up and start your day).  

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I appreciate your response Miss Grant,  I think I may change up my breakfast to start eating eggs with some fruit.  Thanks for the lnk, I will see if I can participate.

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Wow guys I see I'm not the only one originally dx'ed as type 2. My story....at my diagnosis in 2007 the docs thought I was type 2 due to my age, weight and family history. They gave me pills. Not even a year later I was in the hospital paralyzed, with a spinal cyst, mrsa and blood sugar levels screwed up. Tests showed that my c-peptide was low normal, high GAD antibody count and immune system running amok. I was started on insulin that very day.

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I don't know much about the LADA or late onset Type 1 so I read your posts to see if I could learn something and I may have found something I have been wondering about.  Can you be on a CGM without a pump?  I have both but I am unhappy with the pump but wanted to keep the CGM.  I was told it works with the pump and cannot be used on it's own.  Does anyone else use a CGM w/o a pump?

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@Casey7, some pumps are CGM and pump combos. Some are stand alone units. I had a CGM for 6 months before going on an insulin pump. My Accu-Chek Combo does not require a CGM.