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Any tips on living in constant fear of diabetes complications?

Short version: Any tips on living in constant fear of diabetes complications?

Long version: Hi, all. Brand new here and extremely stressed. Please bear with me.

I gained 85 pounds at 9 years old, started going blind at 10, was totally blind by 12, and was diagnosed as T2 at 19. No one thought to check my blood sugar until then. My BS was 480 and my A1C was 8.7. God only knows how high it had been beforehand. I changed things around with diet and exercise (except when I didn't,) and my A1C would swing between 5.5 and 9.8. I also went long periods without going to the doctor at all. I'm now 28 and have kept my A1C at 5.6 for going on three years.

My blood pressure stays on the very high end of normal. I usually get 4-6 hours of sleep a night. My A:CR swings between 34 and 71. My doctor knew there was protein in my urine for years, but I just learned about it a few weeks ago. No treatment was ever offered. Thankfully, my EGFR is still extremely high.

I began experiencing nearly constant PVC's (the sensation of skipped heartbeats) three months ago. 1,000-10,000 a day. I was referred to a cardiologist. My echo came back "essentially normal," whatever that means, and the 48 hour Holter monitor only showed PVC's with underlying sinus rhythm. The cardiologist assumed my PVC's were caused by lack of sleep and chronic dehydration. To be fair, she also told me 28 year olds are too young to have heart problems, which kind of blew my mind under the circumstances.

My questions are:

1. How do you know if you've hit the point of no return? That is, how do you assess whether your vascular system is just too far gone to survive much longer?

2. Is there any pattern to complications, or can they strike literally any body part in any order?

3. How do I account for the 15 or 16 years that my blood sugar was uncontrolled? I'm... terrified. Or whatever's more than terrified. I'm convinced I'm dying.

Any thoughts would be very, very appreciated.

  1. , welcome. I can see why you're so stressed. This must be very scary to go through, especially beginning at such a young age. I hope that others may be able to chime in with their experiences as well.

    Fears of diabetes complications are legitimate. You may be interested in reading these articles on this fear: https://type2diabetes.com/living/fear-complications-understand, https://type2diabetes.com/living/fear-complications

    As for your questions,


    1. This may differ for each individual. I would recommend asking your doctor if you haven't done so already.
    2. There isn't a pattern of complications, they, unfortunately, can strike the body at any time or in any order.
    3. Thinking of the many years your blood sugars were uncontrolled is scary and terrifying. I would ask your doctor (if you haven't), but often some things aren't reversible, but we can still focus on the prevention of other complications and lessening the severity/progression. It's wonderful that you've been able to keep your A1c at 5.6 for 3 years now!

    Please know that the community is here for you if you need support and a listening ear.

    Best,
    Minel (Team Member)

    1. Thank you! The first article was especially helpful. Now just to hope I can reverse whatever mascular damage has already been done, as I understand that's the hardest thing to reverse as well as the most dangerous...

  2. Diagnosed with T2 at 19 seems very young. Could you have been misdiagnosed and in reality you have T1 diabetes?

    1. Hi . I was scrolling through old forum posts and saw this. I can't help wondering how you are doing now. My heart aches for you. Please know there are lots of people who go undiagnosed for years and still fare well. You are not doomed. Are you on a good treatment plan now? Did you ever find out what was causing your cardiac issues? Your doctor really should have ordered thyroid tests as well. I hope that was eventually done. I can imagine it is hard to look back and not be angry. You were just a child. Someone should have figured out what was happening to you at a much earlier age. I hope you have since found a good support netnwork and that you are feeling strong and healthy. Please know we are here for you whenever you need us. Best of all wishes. - Lori (Team Member)

      1. My kidneys, eyesight and the possibility of losing a limb = scary! I breathe; then make sure I take my meds and balance my diet, exercise and check my blood sugar 5 times a day. If I notice any odd symptoms, I bring them up to my doctor right away.

        1. Those are some great coping strategies, . It can be easy to become lost in the cycle of anxiety that comes with a diagnosis. I like what you wrote about stopping to breathe. That is so important. - Lori (Team Member)

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