Living with Diabetes: The Journey From Type 1 Diagnosis To Stability Is Rough

The diabetes nurses were incredible. I only wish I had received their help in the very beginning.

| Nov 10, 2008

I have been reading a lot about diabetes on the Internet ever since I was diagnosed less than a year ago, and I wanted to share my experiences.

I'm a 36-year-old male in relatively good shape. Prior to the diagnosis I was not obese, but I was about 20 pounds overweight. I loved my chocolate milk and breakfast bar in the morning, my coke with my burger at lunch, and fast food or packaged food for dinner, not to mention the bags of chips. (I loved snacking!) I went for walks occasionally, and my work demanded a lot of physical activity, but I did nothing on a regular basis.

The days and weeks leading up to my type 1 diagnosis were filled with sleepless nights and hourly visits to the bathroom. I was a truck driver for a few years, and I drive a lot for my work now, so I count on being able to drive for at least five hours before needing a bathroom break. To need to pee every hour on the hour was unreal for me, in fact, at one gas station I was doubled over in pain because I had tried to "hold it" for too long. I knew nothing about diabetes, so I put it down to starting the flu or something. 

After two to three weeks of this, I was feeling completely drained and very ill. I was supposed to go out on the road for work the day I was diagnosed, but when I woke up that morning I couldn't see. I had actually lost my sight! I could only focus about one foot in front of me. Great for reading a speedometer, not so great for navigating through traffic! 

I eventually made it in to work. The normal ten-minute drive took me 45 minutes. I knew I shouldn't have been driving, but I honestly I thought I was just getting sick and that I was really tired. I was convinced that those were the reasons I couldn't see. 

Once at work, I was greeted by my colleague with whom I was traveling that particular trip. I didn't recognize him until I was literally close enough to kiss him! Yeah, it made him feel real uncomfortable, but I had to make sure it was him. As I had been working with diesel fuel on my last trip, my colleague and I discussed the possibility that I had got diesel in my eyes and that I should go to the doctor to check it out. That sounded plausible to me, so I allowed my colleague to take me to the medical center. (I'm not one for doctors.) After an examination, the doctor there sent me to an eye specialist. The eye specialist asked the right questions ("Was I peeing a lot?" "Was I always thirsty?") and she explained to me that I could have diabetes. 

I was shocked. What the heck was this diabetes thing? I knew it was a disease, but that's about it. Could it really be? The doctor checked took my blood sugar level and it read 38.7. It should have read 4! He explained to me that I had diabetes and that I needed to see an expert to get treated. They sent me off to the hospital to get an injection of insulin. I was seen by a diabetes specialist not too long after that. He put me on glyburide and metformin

I thought, OK, that's that. Now can I get back to my life? 

In short, the answer was "No." 

My diet had to change completely, and I had to start exercising on a regular basis. I remember my first trip to the grocery store. I was there for an hour and I walked away with two items. Everything had sugar in it, even the bread! I had no idea what I could eat.

I was completely flustered. How could I have diabetes? There is absolutely no history of it in my family. I thought at the time that it must have caused by eating processed foods combined with stress at work and home. That was the only explanation that made sense to me. 

I continued taking the pills for a couple of months, but I ended up crashing a lot so I was taken off them and put on another one. I changed my diet and my lifestyle. I thought that I was doing pretty well, and then I started losing weight at an alarming rate. 

Before diagnosis I weighed 205 pounds, and now I was 130 pounds. When I approached my diabetes doctor, he told me that it was "all in my head" and that I was depressed and needed to get mental help. I think he judged me to be a very emotional person. It's true, I was freaking out inside! It turned out that what I needed was insulin injections. My family doctor got me into a diabetes clinic and it was there that I learned how to inject myself and how to cope with everything related to diabetes. 

The nurses there were incredible. I only wish I had received their help in the very beginning. My drastic weight loss was due to uncontrolled sugar levels. My body had used up all my fat cells and it was slowly eating away at my muscle mass. I had been working out a lot to try and bring my sugar level in check, but it wouldn't come down. Apparently I was doing more harm than good. 

I now weigh 150 pounds and holding. I am on four injections a day (Levemir at night and Novorapid at each meal). I exercise on a daily basis and eat the right things. There are still days when I am high and I still crash occasionally, but on the whole I'm doing okay. 

I always dream of a cure, but then I realize that maintaining people with diabetes is a five billion dollar a year industry. If a cure were ever found, all that profit would be lost. I can't help but feel like I'm being preyed upon by greedy pharmaceutical companies eager to profit from other people's afflictions.

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Categories: Beginners, Blood Sugar, Diabetes, Diabetes, Food, Insulin, Living with Diabetes, Losing weight

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Posted by whimsy2 on 10 November 2008

Since the patient had lost a lot of weight and didn't have the typical apple shape of type 2 diabetics, he should have been tested for GAD antibodies. The proper diagnosis would have been LADA - latent autoimmune diabetes in adults, another name for type 1, late onset. And you don't treat LADA with pills; insulin is the only appropriate treatment. So the first doctor made at least one mistake.

The big question is, why did the diabetes doctor, the second doctor, think the patient's problem was only emotional? Hey, it's true diabetics are prone to have depression. But this doc missed the boat totally. An A1C would have made it quite clear that the patient was an out of control diabetic; why wasn't one done? The rapid weight loss should have been another red flag. I say that doc is at the edge of malpractice.

Posted by whimsy2 on 11 November 2008

A third red flag that this patient's wasn't type 2 should have been no family history of diabetes. Both docs seem to have missed this -- or at least no mention was made of it in the article.

I suppose the patient was given a "standard dose" of insulin, which rarely works, and nothing was mentioned about the importance of frequent testing either -- and what to do with those test results.

This diabetic's care is substandard and it wouldn't be at all surprising to me if he developed complications down the line -- complications that could be avoided.

I always refer newby diabetics to "Dr. Bernstein's Diabetes Solutions". This is the single most important book written about how to control diabetes, IMHO. I hope he reads this comment and goes out and buys it ASAP.

Posted by Anonymous on 11 November 2008

I was the same - I am a 37 yr. old female and when i had the symptoms, i immediately thought i had diabetes, esp. when everything on my computer screen at work went blurry. When i called my primary doctor, i thought she should've ordered bloodwork, but she asked me when my last eye exam was! Of course, in the meanwhile, i lost 20 lbs. in one month - and when i went to my eye dr., he immediately sensed it was glucose issues and faxed something to my dr. - finally she took it seriously but then diagnosed me as Type 2 and put me on Metformin. After 2 weeks of still waking up to over 200 BG and faxing these results to her, she just increased my levels. She never even thought i could've been Type 1, even though i also had no family history. It wasn't until 2 weeks later when i asked to attend some kind of Diabetes education classes, that while learning about Type 1, i thought i had the classic symptoms, and asked the nurse if i could be tested. Good thing i did - i had high ketones & immediately started insulin! i felt so much better - and was no longer screaming at my kids for no reason at night :) Long story, short - with God's help, we are truly our own best advocate and must speak out -- I am now on OmniPod (insulin pump) and have the best set of diabetes nurses/endocrinologist, whom i see regularly.

Posted by Anonymous on 12 November 2008

Andrew -

I had the exact same thing happen to me - got sicker and sicker, ended up in the hospital, diagnosed as a Type 2 diabetic... They put me on Metformin, I changed my diet, etc. - and started to waste away. My wife was terrified. Finally it was the nutritionist who they sent me to who looked at me, looked at my numbers, and said "I don't think you're a Type 2 diabetic - ask them to do an antiGAD test on you. My GP was reluctant - added some long-acting insulin to my medications list but still thought I was Type 2... I got worse and worse, and finally they sent me to a specialist - who took one look at my chart and said, "You do not have Type 2 diabetes. You have Type 1 diabetes." Put me on an insulin regimen, and I got better IMMEDIATELY.

I know us late-onset Type 1 is a rare kind of diabetes, but still I am appalled by how common this misdiagnosis seems to be. According to both the endocrinologist and the nutritionist, it should have been obvious from my C-peptide levels that I didn't have Type 2 diabetes - and still my GP and another doctor completely misdiagnosed me and put my health at risk. There needs to be better education for health care professionals about the existence of late-onset Type 1 so that this doesn't happen to more people.

Posted by Anonymous on 12 November 2008

I had the same story happen to me three years ago at 47, Suddenly lost over 50% of my vision, and felt like I had the flu, had to pee a lot and lost 12 pounds. Went to my eye doc who said go to the clinic. He thought I had B.G. trouble. It took three days to finally hear that I had Diabetes, my fasting sugar was 27. I also was put on Metformin, which my body could not tolerate. I had severe stomach cramps and diarrhea. Over the next 6 months they tried me on every pill there is. Most caused big drops, and made me feel terrible as I was never stable. They finally did the c peptide test and discovered I was LADA. I had been through the wringer just because they hadn't done the right tests! I'm 2 years on a medtronic pump and continuous b.g. sensor. My A1c is finally coming down latest was .73. The continuous sensor makes all the difference in my life, as I continue to be a very brittle diabetic.

Posted by whimsy2 on 12 November 2008

Actually, LADA isn't all that rare. According to Wikipedia, up to 20% of non-obese diabetics diagnosed as type 2 are actually LADA. But apparently the word hasn't gotten out to the medical profession.

Here's the Wikipedia link:

Posted by AnnetteUK on 13 November 2008

Andrew.. they truly are looking for 'the cure' Every year we have the JDRF walks and collect millions of dollars for research in finding the cure. I am entering a study that Joslin/Harvard have, of people that have survived 50 years with J.D. [about 600 of us in USA] and within that group there is a smaller group [which I am in] that after 50 years have no complications at all. Through us, they hope to find the secret of our surviving so well. That is their and MY goal in life!! To find the cure, mainly for the children.

Posted by Melitta on 18 February 2009

Adult onset Type 1 is two to three times more common than childhood onset according to EVERY study that includes antibody testing. Why does the misdiagnosis continue? It is medical malpractice. And often doctors say antibody testing is too expensive, when it costs less than $500 full price and that is NOTHING compared to the complications that can develop when misdiagnosed and treated as Type 2.

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