I was diagnosed with background diabetic retinopathy last November, and I am finding it difficult to come to terms with. This was a surprise for me, because my control had been fairly good in the 9 years since diagnosis. The hba1c had always been <7% and usually between 5% and 6%. I now understand that there may be genetic factors at work, although this isn’t reassuring.
I spent most of Christmas scouring the web, looking at research papers. My endo has said not to worry, and that retinopathy can come and go over the years. However, from what I have read, the condition gradually gets worse.
Finding this complication has made diabetes overwhelming, as I am now testing over 20x per day, in the hope that the retinopathy can at least be slowed down, before it becomes proliferative. Losing vision in the years ahead is something that concerns me a great deal. I keep on going back to searching the web for answers (sometimes for hours). This often makes me feel terrible.
I’m sorry to hear about your diagnosis. Doing what you do to maintain tight control is great.
Rest assured that background retinopathy, if treated with tight A1C, and annual (or more frequent if recommended) dilated eye exams can be present but not change (or change much) for years and years and years–it’s been at least 15 years since my eye doc gave me the bad news. And you’ll find on this site that even if retinopathy does progress, people have had really good results from laser surgery.
Length of time spent living with diabetes and genetic factors (unfortunately, cataracts run in my family–guess what I have the early signs of?) do come into play, but you can’t do anything about that, right?
Also do what you can to make sure that your other numbers are on target–blood pressure and triglycerides.
There are quite a few eye health supplements on the market, but I haven’t yet seen research that convinces me they are worthwhile to take.
If worry over retinopathy is keeping you from enjoying life or doing your normal activities, therapy can be helpful in coming to terms with the things we cannot change. Seeking therapy is a sign of strength and determination and is something that is all-too-often missing from life with a chronic condition. Best wishes!
Thank you for your reply. It is helpful to know that your retinopathy has been stable. I will make sure that I am careful with blood pressure and triglycerides as well as blood sugar levels. It is also reassuring that laser treatment can be very effective if the condition does progress.
As you have mentioned, I cannot let this worry take over. I will seek help if it continues to have a disproportionate and unhelpful effect on my life.
Thanks again and best wishes to you.
It took 27 years of good control for me to develop retinopathy. Kaiser Permanente (a US ‘health insurance’ company) told me there was nothing that could be done. A few months later blood leaked into my left eye blinding me. Kaiser again told me that, “once blood leaks into the eye there is nothing you can do.” I was forced out of work as a result of my eyesight and a month later Kaiser cancelled me.
Over the next year black spots developed in my right eye and I searched for someone, anyone who could save my eyesight. Luckily I live in Portland, Oregon, USA and I stumbled across Eye Health Northwest who referred me to Dever’s Eye Institute, who sent me to Casey Eye Institute. In May of '09 I had about 30% of my eyesight. On June 22, 2009 Casey Eye Institute performed a procedure on my left eye that removed the blood and restored vision.
Laser treatments in my right eye in combination with good control stabilized my right eye and stopped the bleeding.
There is only one way to alleviate your concerns. Go find an Opthomologist who treats Type 1 retinapathy aggressively. Between laser and surgical options there is no reason for you to lose your eyesight. This in turn will alleviate the anxiety.
In addition B-12 and Magnesium seem to help, but check with your Endo first.
Keep this Yank in the loop, I know exactly where you are coming from. I check my BG at least 10 times a day. Dr. Hwang, my optho, claims it is the overall average BG that you want to concentrate on.
Sorry for the horror story but if you keep it between the lines, there is a great chance that it will not get worse for a very long time. Remember blood pressure and therapy is great for the anxiety of Type 1.
Cheers my brother,
Jason Casey
Thank you for sharing your experience with me. I am sorry to read of your experience with such an irresponsible insurance company. It is good that you found the Casey Eye Institute. I will take your advice and make sure that anxiety doesn’t become a problem.
Hey Malcom,
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.
http://www.retinaeyedoctor.com/2009/10/diabetes-unlikely-to-cause-b...
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.
Hi Josh,
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.
Hi Malcom,
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!
Hello Malcom,
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.
Hello,
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:
http://www.tudiabetes.org/group/diabeticswitheyeproblems/forum/topics/map-and-rpp
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.
Hi Malcom,
There are some great responses and strategies on this thread that I liked reading. Definitely follow Josh's lead on blood pressure. I also recommend consider taking a low grade aspirin everyday, like Ecotrin. It increases blood flow throughout the body and its a low grade aspirin which can decrease the chances of side effects. I know many people who have done this and had higher A1C's than you yet still managed to have little if any retinopathy. The technologies out there are incredible as well including laser treatment but hopefully you won't have to go that route. I have had retinopathy for 10 years and at one point had minor leakage but exercise, a better diet, ecotrin and yoga allowed it to improve.
I can't wait to talk to you about this Patrick sometime in Jan. It will be extremely good to talk to someone in person who is dealing with this, and dealt with it. I should do Yoga. Or get back to Tai chi.
My doctors seem more confident than me right now ;-)
Dear malcolm3057,
Hope you are managing well.
In my opinion, the number of years that a patient is diabetic is the biggest risk factor to developing diabetic retinopathy.
I've been in practice almost 20 years and would have to say that almost every diabetic should expect to get background diabetic retinopathy. It is more likely than not to develop.
But, having background diabetic retinopathy does NOT mean that you will lose vision. Especially nowadays!!!
The chance of your losing significant vision is <1% over you lifetime. Plenty of people retain 20/20 with the diagnosis of background diabetic retinopathy. The best you can do, as many have highlighted on this thread, is control your serum glucose as best you can. There is nothing to prevent the disease, but there is plenty you can do to prevent vision loss. Make sure you have a retina specialist who you see regularly. Hang in there! Randy