I am new to this site, but joined for reasons, you would understand. I have had T1 for 32 years and got NPDR ( Background) probably about 12 years ago? It happens to most of us regardless of control. Some people get it worse than others, much like anything that affects a large body of people. BUT here is something that will make you feel better.
Look up this guys site and read the stuff on retinopathy. TRUST me, I KNOW exactly how you feel. I am 37 years old and I have been checking on the internet for over 10 years. One thing I can say is this... Nothing is written in stone, and you may like me be in the background stage for a very long time , and may NOT go to PDR ever. It does happen with the majority of Diabetics. Retinopathy is NOT a one way street, just a scary one that keeps you up at night. The one thing you HAVE to do, and not be afraid to go to every appointment your opthamologist suggest for you. Don't let fear dictate to you. We are much better off now tha we where even 5 years ago. retinopathy is about prevention, and the best time for that is before vision is effected. Too many people don't understand retinoapthy is a silent condition and that is WHY so many people lose vision from it. Not because it is something that can't be stopped, but because it is something that can be stopped if you are aware of it before vision is affected. Only your eye dr can do that. Don't listen to the internet, listen to your Endo and your retinal dr. I go to Joslin for both and whole heartedly suggest anyone who can, to go there and get the education they can. So many diabetics live long full lives without vision loss, if they stay on top of the appointments. Only about 0.3 % of T1s have severe vision loss bro now a days. But so many ignore the fact you MUST have regular yearly eye exams. Hope that helps. I still am in the midst of a panic about my own Moderate NPDR, ( I go through cycles every few years simply because I have had T1 almost my whole life) but even my Endo told me to relax. That my thoughts I keep thinking are far more grim than what my reality is. I am a proffesional designer and painter, and vision loss freaks me out more than anything. But we have to understand we have the tools to keep small problems small. Also stress can cause hypertension...and is worse for the eyes.
Thank you for your post. I'm pleased to say that I am nowhere near as scared about retinopathy as I was when diagnosed. Looking to the internet was a big mistake. I remember taking in information, which I was unable to put into context. A lot of time was spent reading statistics published in the 80s. There was almost no information on the effectiveness of screening and treatment now. When my Endo mentioned the 0.3 % figure, I struggled to believe it at first. Many other doctors and nurses had also reassured me, after first asking if I smoked and if I had regular eye exams. This forum has helped too. After a while, I stopped thinking gloomy thoughts about how I could be an engineer without good eyesight. It is clear that the eye doctors have achieved a lot in a short space of time.
I am happy to hear that. I still struggle with it. But I agree. My endo told me the same, that the info online is never filtered. I got to my eye exams every 6 months and really have awesome blood pressure, and don't smoke and work out and genetically, the three T2 Diabetics in my family ( paternal grandmother, Maternal grandfather and maternal aunt) never had retinopathy, and there is no genetic disposition for bad eyesight. So, long story short, the statistics are on my side. I am an industrial designer so I totally understand your comment about being an engineer. Good luck!
I have another thread going about my current struggle with retinopathy. I have been T1 for 36 years with good control with exception to some teen years. I have developed PDR that actaully came on pretty sudden from its normal course. Don't let my story discourage you though. A couple things to consider that may help:
-My retina specialist is excellent and ensures me that I will NEVER go blind from PDR as it is being actively treated. Mine seems to be pretty active with bleeding still occuring after extensive laser treatment but he is not concerned at all, even though I may need a vitrectomy
-A good A1c does NOT mean good control. If you have plently of highs and lows the average will still look good. According to the Bernstein solution good control means between 70-95 fasting, and not more than occasional post meal spikes of 140 mg/dl. If you are eating ADA "recommended" diet with substantial carbohydrates, you are most likely not in good control by these standards.
-My A1cs have been <7 most of my life but had many highs and lows trying to balance insulin and carbs in my diet. A few years ago I went completely low carb per Bernstein's diet recommendation.
BTW: I am not in any way affiliated with Bernstein. I just wish I found his book 20 years ago. It may have helped stave off complications even longer.
I will follow your thread and I wish you a very speedy recovery from the problems you are having with PDR. Thank you for sharing the advice. You are one of many diabetics I have found on this website, who have found Dr. Bernstein's low carb approach very helpful.
I don't like the A1c. A few years ago, I can remember walking into the doctors feeling worried that I'd have a high A1c. I'd almost always leave feeling reassured, because my A1c was as high as I thought it ought to be. It was only when I got diagnosed with NPDR that I realised this was madness.
I didn't go completely low carb as Bernstein suggests. Nevertheless, I reduced carbs, particularly in the morning and the evening. Carbs in the cereal + milk, cortisol and caffeine would cause a big spike after breakfast. I'd find my sugar levels rising by 36 mg/dl every 10 minutes. No amount of insulin can solve that problem (without a huge low 2 hours later).
Having a BG level between 70 mg/dl and 140 mg/dl used to be a very vague target. I felt a sense of relief if even 2 BG readings (4 hours apart) were in that range. More often I'd be upset, but not surprised, to find out my sugar levels had wandered off somewhere above 240 mg/dl. At the time, I'd consider 200 mg/dl as not bad. Nowadays I insist on knowing my BG and not guessing it. Without a test or cgm reading every hour, I feel very uneasy.
Hey Malcom, I know that feeling that is why i am getting back on CGM next month. I can get to a 6.9 on my own, but it takes a lot of testing, and I think the CGM will help with peace of mind.
By the way check this thread out... I just started it.
Demand to know more about this. I think if enough patients ask and look to these new evolutions of current therapy, we will help make the future of our condition. If I have to, I will fly to London and get this laser done. Traditional PRP had to start somewhere. I am actually going to ask at Joslin if this is something they are doing trials with.
Hey Malcom do yourself a favor, and try this MAP and RPP equation on youself:
I use a CGM (Dexcom 7) and find it is a very good tool to have in the bag for better control. With that being said, it is tempemental and can be pretty inaccurate at times. I originally got it to help with lows during/after exercise. One thing that is annoying is that it is always way behind actual BS. I will feel and correct my lows way before the CGM detects them. It is chirping at me 20-30 minutes after with a "low warning" that I already corrected and am back in normal range.
I do like the CGM for having a general idea what my BS is when not able to test and how they are behaving through the night.