A Life-Changing Critically High Diabetes Diagnosis

Diabetes Definition
Image courtesy of Diabetes Living Today.

This post is a hybrid re-post from my food blog (April) and my hiking blog (June), where I have previously shared about my diagnosis. Since those posts, some aspects of my diagnosis and treatment have changed.

The ongoing challenges and discoveries in this diabetic journey have prompted this already overextended blogger to yes…start another blog, about my diabetes.

There is so much about this disease to learn, and so many frustrations. I need someplace to talk about it without cluttering up my other blogs and my Facebook stream. And if my journey can help even one other person, it’s worth the extra blogging time.

My Diagnosis

On April 14, 2014, my life changed. That is the day that my husband Jeff and I went together to my doctor’s office early in the morning to learn the results of the full physical my doctor performed on me a few days prior, on April 10th. During the actual physical, when I described my symptoms, the doctor initially suspected a hyperactive thyroid. When she got my lab results back that morning, my doctor was shocked.

The doctor diagnosed me with a very extreme case of Type 2 Diabetes, along with extremely high cholesterol. I would never in a million years think this would be my diagnosis. The doctor was very upset when she went over my lab work with me. My A1C was 15! (I recently learned it was actually 15.8, almost a 16!) To put that in context, diabetics should be at A1C 7 or lower, and a 13 is considered dangerously high. My doctor said that in 30 years of practicing medicine, she has never had a patient at that level. She couldn’t believe I hadn’t lapsed into a diabetic coma. My cholesterol was sky high (378!). My resting heart rate was the highest she’d ever encountered. She said I was near cardiac arrest. She said I was at fatally high A1C and cholesterol levels. She said I am the healthiest looking unhealthy person she has ever treated. She said I would die if we did not start lowering these levels fast, and if I did not take my condition seriously.

The Symptoms

Jeff and I have been avid hikers since we started dating in 2008. Our 2009 honeymoon was planned around a hiking and outdoors vacation to the Canadian Rockies. Until about a year ago, we spent just about every weekend hiking, pushing for longer distances and higher elevation gains, and making really good progress at that. But during our fall 2011 hiking vacation in the Smoky Mountains, I noticed my energy and endurance starting to wane. I was also a bit heavier then, so I attributed that as the cause. By summer 2012 and definitely 2013, I was starting to struggle on even the easiest hikes. I would really huff and puff and tucker out. My energy was way down. I always felt exhausted. I wasn’t sleeping well (chronic insomnia), so I woke up exhausted. I’d get really cranky on the trail because I could feel my blood sugar dropping and needed to snack a lot. On our vacation to New Orleans in September 2013, my feet kept swelling (humidity, right?).

We attributed this to many things. The insomnia and exhaustion were due to stress and being overworked (even though my high stress couple of years on a big website redesign project at work wrapped up in January 2013). Overextending myself on volunteer activities. Not regularly walking every morning anymore, so not in good cardio shape (again, due to the exhaustion and lack of sleep). Getting older. I was thin and appeared to be in good healthy condition. It couldn’t be anything serious.

2013 New Orleans Trip
September 2013, at my Weight Watchers goal weight (size 8). Attending the Saints Monday Night Football game during our New Orleans vacation.

What I didn’t tell my husband were the other symptoms that started regularly kicking in around October, November, and December of 2013. My feet and ankles were swelling a lot, almost every day at work. My arms and wrists tingled (I work, live, and breathe on computers…carpal tunnel, right?). My up-close vision got blurry. I experienced gut-wrenching (literally) burning stomach pains on a regular basis, which only went away after eating something. After eating our way through Louisiana and Mississippi for 10 days, my husband gained 10 pounds while I lost weight. Around the holidays, I noticed that I could eat whatever I wanted, in whatever quantity I wanted, and I kept losing weight (this was hard to notice at first, because I’d been back on Weight Watchers for a good year, and had very gradual weight loss). I felt like I was in a constant mental fog, and like I was always moving in slow motion. The past year, my normally bouncy full head of hair changed and thinned out (my hairdresser of 10+ years kept telling me to have my doctor check my thyroid). Everyone thought I had a hyperactive thyroid.

Buckhorn Lodge, January 2014
At a swanky event at the Buckhorn Lodge in Mount Baldy, January 2014 (size 6). I’ll be happy if I can return to this healthier weight and size.

Finally, I went to the doctor. I needed routine checkups anyways (yeah, I hadn’t been to the doc in a while). And I was finally scared enough about my symptoms. That gets us back to that initial diagnosis.

Super Restrictive Diet

My doctor prescribed an immediate severely restricted diet along with metformin for the diabetes, lipitor for the cholesterol, and a high level of OTC vitamin D to boost my immune system. My doctor is big on a holistic approach to health and believed I could drastically improve my health through diet and exercise. No sugar at all. No carbs other than what comes naturally in vegetables and fruit, and a few other very low carb items. Except for oatmeal and bran flakes, which are good for my cholesterol and blood sugar. No pasta, no rice, no potatoes, no bread. No booze! Only 1-1/2 fruits a day (too much fructose affects blood sugar). Only almond milk or soy milk (glucose affects blood sugar). Only lean meats and fish. Ditch the fat-free foods touted by Weight Watchers and other diet programs (loaded in sugar). So essentially, lean meats, non-starchy vegetables, and a little bit of fruit.

This diet sucks. It makes me really cranky and sometimes quite down. But, I will be able to add the restricted foods again in moderation once I’m at healthy levels. And I keep reminding myself… it could be much worse… I could have cancer, like some of my friends. I can do this. Being a 15 year Lifetime member of Weight Watchers, I am used to tracking food and restricting bad foods.

If you’re into a low carb, low cholesterol diet, follow our food blog, The Taste Place.

Oh yeah. She wants me to gain weight! On this severely restricted diet! Unlike the stereotypical diabetic, I am thin. At the lowest end of my recommended weight range and BMI…I fluctuate between 106 and 108, and I am a size 4 (my high school size). So far, I’ve only been able to put on a pound or two, but take it right back off with exercise. But, at least the medications have stabilized my weight for the last coupe of months.

August 2014 Wedding Anniversary
Celebrating our wedding anniversary, August 2014 (size 4, 108 pounds).

Exercising

The first few weeks after diagnosis, adjusting to the new medications, I still had no energy. But I had to exercise if I was going to lower my numbers and get healthy. We started walking at our neighborhood park again (Holly Beagle was happy!). At first, I could only do one very slow lap around the park (the seniors with walkers could lap me!). We built up our miles and speed, and now walk every morning before work. My energy suddenly drastically improved. I had more energy than I’d had in one or two years! I felt like a new person. I wanted to hike again…

A couple weeks after my diagnosis, we went on our first hike since August 2013. Probably only our third or fourth hike in the past year. And I felt great! It was soooo nice to be back out on the trails! I had way more energy than I remember having on hikes in a long long time. Jeff kept commenting that I wasn’t huffing and puffing and struggling like I had on even easy hikes the past couple years. I still don’t handle heat well, but that’s how I’m wired, and that won’t ever change.

July 2014 Ebbetts Pass
Feeling really good during our July 2014 high Sierras vacation (size 4, 108 pounds).

Jeff and I were on a roll with walking every morning before work, and took a vacation in early July to the Sierra Nevadas where we got in some good hiking. Since coming home though, we’ve been in a slump. My energy isn’t quite as high anymore. Some of it is due to less sleep from stress again (very busy time at work), but I realize that much of it is mental, due to a bit of depression from some setbacks in my diagnosis.

Recent Setback

When I shared my diagnosis in June on my hiking blog, I had just had my 60 day checkup and was on a bit of a high.

I am nowhere near healthy numbers yet. But my most recent lab results, for my 60 day checkup, showed my A1C dropped to 12.6 (Doc says a “quantum leap” in this timeframe) and cholesterol panel “infinitely better”. It is going to be a long road back to healthy, however our daily walks and our weekend hikes will play a big role in that goal and then in my continued maintenance. My awesome support system of a husband plays a key role in that progress and goal, too.

I refuse to be a diabetic that ends up immobile, with amputations, or on dialysis.

Since then, my diabetes progress has stalled, despite my restrictive diet, what had been regular exercise, new medications (glipizide and an ACE inhibitor), and ramped up dosages of old medications (metformin). My July lab work showed my A1C climbing back up to 13.1, and my August lab work only went slightly down to 12.9.

My doctor emailed me two Sundays ago to give me that latest 12.9 A1C result, and to tell me that after four months, it was time we consider insulin since my numbers have not dropped enough with diet and pills alone. I went in for a consultation a couple days later and the doctor explained that she was re-diagnosing me as a Type 1 diabetic. She has felt all along I was probably Type 1 (late onset), but she had hoped I would be a Type 2 and tried treating me as a Type 2. However, my body’s resistance to the pills and diet tell her I am Type 1 and need to go on insulin.

I have been pretty depressed since getting this news. Not Robin Williams-type depression, just very down. Having to go on insulin is very upsetting for me. It means that I don’t have control over my body (I’m a control freak). It means daily injections — I hate needles. And while I know plenty of people on insulin, and that insulin-dependent diabetics can lead normal lives…it’s still not healthy. Insulin is harsh on the organs, but the alternative is even worse (dialysis in 5 years is what my doctor forecasts). At almost 45 years old, I have never had stitches or a broken bone. Other than birth control and occasional antibiotics, I have never been on medication until now. So, this is a very difficult diagnosis for me.

I haven’t started the insulin yet. That attempt at getting treatment has been a disaster. So more on that in future posts.

11 thoughts on “A Life-Changing Critically High Diabetes Diagnosis”

  1. Hi
    i just find out my A1C is 12.9 and blood sugar is 246. what happen is i went to the doctor and she gave me metformin for like 6 months ago but no improvement .i called my cousin backhome who is physician and asked me about my A1C .I told him that i have no clue because the physician i went to she did not check my A1C . He was surprising ???and me too??? .so i decide to do it and i was shocked to find out is 12.9 .
    i am upset form that. Because if she did and gave me a good med that time i was ok but that is what happened .
    is there any chance to bring tha down?
    me too i dont wanna tha get worst???
    thanks

  2. My husband is on 1700 mg of metformin and they wont see him at the Dr. till Oct. 4th. Everybody says he needs insulin now. They want to make him wait for a month to see if the a1c comes down. He was already on 1000 mg of metformin for 2 months, they just increased it a week ago. What is the danger he has lost 20 lbs already.

  3. I’m in same boat i’m about 13.0! Addictive to sugar! I eat half and half! Breads cereal, apples oatmeal with flaxseed and cinnamon! But I like sweets!

  4. Hi Colleen,

    Your doctor cannot have possibly reclassified you as an T1D based on guesswork? There is a specific antibody test for diagnosing T1D..

    Anyway, you seemed to have been eating carbs as you attempted to lower your BG. Have you tried a very low carb diet? I recommend Dr. Bernstein’s book “Diabetes Solutions”. Really good book. I followed his advice and have since reversed by T2D.

    Best wishes with your journey.

  5. My situation is weird. I was shown to have an A1C of 6.9 in 2016, then suddenly in 2017 tested at 14, then 14.5 in 2019. My doctor hasn’t said anything about being a type 1, but then I’m just getting started, reluctant to take meds, or now the insulin that was advised I take. I feel healthy most days, just diagnosed with depression and on Lexapro for that, but my doc is surprised that I have thus far not experienced the symptoms of my high A1C with regard to my diabetes diagnosis. I was like you in that I lost a lot of weight and can eat just about anything I want and still am losing. I am reading Dr. Neal Barnard, whose approach to “reversing” diabetes seems the most sound. I am not a meat eater (I will, occassionally, but it is not my thing. I eat mostly vegetables, pasta and whole grain bread, and fruit sparingly). Going to try Mr. Barnard’s approach and see if I have any success with that. Thank you for sharing your experience and be well.

  6. Thank you for sharing your story, Colleen. I’m right there too. I have T2D but an A1C of 13.3. Been taking Metformin and Glipizide for years but this last year, my sugar went totally out of control. He wants me to take insulin shots with every meal now. So discouraged. I appreciate your writing about this.

  7. Gordon Williams

    Wow. I am a newly diagnosed T2D. My A1C was 16 and my BG was 498. Yes, this put me in the hospital for 4 days and feel really blessed it was not the morgue. They tried metformim while in the hospital but body did tolerate it. I take insulin 4x a day. I’m not grossly overweight but do have the middle aged man stomach. BG was normal forever but 60 days after first spike, hospitalized. I am will to do whatever it takes to reverse this. I am just coming to grips with how serious it is long term and I don’t want to lose limbs or be hooked up to a machine 3 times a week. Also on a 60 grams of carb per meal meal plan.
    I feel good today but realize I really need to turn this thing around.

  8. melinda i allen

    I too have had a spike in my A1C to 12.9 and got the blood work to confirm type 1 or type 1.5. And it is not a death sentence or a road to dialysis. The insulin pump is a good option and can stabilize your blood sugar without multiple shots a day. You need 5o see an endocrinologist that specializes in diabetes.

  9. Pingback: Hiring a Professional Genealogist was a Smart Move for This Pro Genealogist | Colleen Robledo Greene

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