I got the impression with her answer to my first question that she did not want to take time to answer questions. However, I was paying money and had spent time waiting to see her, so I was going to ask questions whether she liked it or not.
The most interesting thing to me was that she considered the number of microaneurysms in my eye to be insignificant, and told me so. When I asked how many I had compared with last year, she said it was about the same. When I asked for details, she told me it was insignificant, and really made no difference. When I pressed her for an answer, she said, "Oh, about 10 in one eye and 5 in the other." It felt like she was pulling something out of thin air; like she really did not want to give me any answer at all so just picked those numbers so that I would stop asking.
I wonder how much she had read of the notes taken in my pre-evaluation time with the person who checked my vision. We had started off talking about veganism right away, since I had thanked her for rescuing me from the waiting area's loud TV discussing & demonstrating how to make mouth-watering cheeseburgers.
The pre-eval woman had asked me lots of questions out of her own personal interest (her husband is a chiropractor who has been dabbling in raw foods). Toward the end, she started writing notes when I told her I was very interested to see how this visit would go, especially since the doctor in my last visit had told me my retinopathy was less than the previous year.
This ophthalmologist told me flat out that retinopathy could not be reversed; it might not progress, but it would not go away. She told me that at 10 years with type 1 diabetes, most people have the beginnings of retinopathy, but that some ended up needing surgery and some didn't. She said the best thing I could do would be to control my blood sugars, and that my A1c was perfect.
She said that the microaneurysms are not the concern; the concern is the macula and developing maculopathy, a thickening. She had taken a picture of my retina with the OCT machine today, which I learned in my research is helpful for documenting and comparing changes from year to year. This doc wanted me to come back in 6 months instead of the regular one year, despite the fact that my eyes looked the same as last year.
I wondered if she just wanted more money coming in to the practice. (At a previous diabetes doctor's office, appointments could only be made 3 months out--a way to build up her new practice by getting patients in for more frequent visits.) I chose to go with my normal one year appointment, but they weren't able to make an appointment that far out (unlike in previous years). The receptionist looked scared to get in trouble for scheduling me further out but said she would put me in the computer, and they would call me to make an appointment.
Of course I wanted to do follow-up research as soon as I got home, since the doc had been so tight-lipped and did not give me much information at all. I had to wait for my dilated eyes to return to normal before doing so, however. :)
I read various sites with big technical terms that healthcare practitioners use for research, and understood only a few things here and there. One thing I learned was that microaneurysms are indeed the best way to diagnose retinopathy; however, microaneurysms come and go. They can disappear, but it may not necessarily be a good thing; it might mean progression of the disease. I wondered if the "fewer microaneurysms" at my last visit had been a good thing or a bad thing.
I read that diabetic retinopathy can happen even in people with great control of their blood sugars; that different peoples' eyes vary, for instance, in sensitivity to blood sugar changes.
Here are some statistics from studies that caught my attention, from patient.co.uk:
- In type 1 diabetes, microaneurysms start to appear after 5 years in 25% of cases, affect half of cases at 10 years and nearly all patients after 20 years. Proliferative retinopathy, as defined by a formation of new vessels, appears after 10 years and affects about 40% after 20 years.
- Progression of retinopathy is associated with the severity and length of time that hyperglycemia exists. If diabetes is diagnosed before the age of 30, the incidence of DR after 10 years is 50%, rising to 90% after 30 years.
Can I just say I hate reading those sorts of things? Ugh. So basically, avoid sugar spikes, keep good blood glucose control, and hope for the best.
So then I did a search to see if diabetic retinopathy could be reversed. I found some interesting threads on diabetes forums. One that gave me hope was this one. I found it particularly interesting that one person said her diabetes doctor liked her A1c levels in the low 6's, but that she got retinopathy with low 6's A1cs. So in order to reverse her retinopathy, she worked like a maniac to get good control, and lowered her A1c to 5.3, 5.2, 5.1, 4.9! I have never heard a diabetic say that before.
I had been bummed that my eyes were the same as last year (though I would have been very curious what my normal ophthalmologist would have said about them)...I really had been hoping that all traces of diabetic retinopathy would have been gone.
But from reading these posts on the diabetic forum, I started considering my blood sugar control more. It is true that my readings and A1c are much better than they used to be (or ever before), but perhaps I need to get them even better if I want to completely get rid of my retinopathy.
I have, at times, aimed for the "flat line around 100" readings on my CGMS, but over time, have gotten a bit lazier. It is hard to be perfect all the time. :) It is mainly mealtimes that need more work. Sometimes I just want to eat, and fail to be mindful of how quickly my blood sugar is rising from the meal. Perhaps I need to go back to including more greens with meals. I had stopped doing so with the inclusion of essential fatty acids in my diet, which slowed sugar absorption.
I will have to play around with this. Diabetic Retinopathy is nothing I want to mess with. I do not want to go blind. I even considered doing another green-smoothies-only fast to see how it worked for my blood sugars; to see if I could get more flat-line readings.
I definitely know that in recent weeks I have been totally tuned out with regards to post-meal blood sugars. I have been absorbed in work, only rarely glancing at my CGMS or waiting until it has alarmed several times before doing anything to correct my blood sugars. This absorption in work to the exclusion of attentiveness to my diabetes control, I am thinking, is a luxury I am not willing to afford. I really want to keep my vision.
Hmmm...thinking I might head down the path of that gal who got her A1c to crazy-low numbers in order to completely reverse her retinopathy. Is it worth it to me? Yes. I want to see.