I’ve had type 1 diabetes for 33 years this month and recently I had a not-so-positive review from my retinologist at my annual check-up. According to him, the sudden deterioration of the vessels in my one eye was almost inevitable for someone with type 1 over 30 years, and that the vast majority of long-time type 1’s will experience some degree of deterioration regardless of control.
I asked my retinologist what I should be doing to halt the progression of the retinopathy. He looked at my recent A1C’s and cholesterol values. Then he sort of shrugged and said that my numbers were already good and that I could try to have tighter glucose control. Meantime we would just keep watching that eye and wait.
Huh?? Where are all the advances in medical technology? Apparently in 2007 there is nothing medically we can do to halt the progress of early retinopathy. Naturally, this scared the bejesus out of me and also made me furious that complications may happen regardless of what I do.
So with nowhere else to turn I entered the shady realm of dietary supplements. I have a degree in chemistry and worked as a chemist briefly before switching career paths. There is not much clinical research on supplements in the United States. Mainly because pharmaceutical companies cannot get full patent protection on nutritional supplements so there is no incentive for research funding.
There are two dietary supplements that I think are most promising for improving or preventing retinopathy—benfotiamine and pycnogenol.
Benfotiamine is a lipid-soluble thiamine (vitamin B1) analog. Research has shown benfotiamine blocks three of the four major pathways leading to small blood vessel damage. Benfotiamine is now being tested on humans in the United States by Dr. Michael Brownlee and colleagues at Albert Einstein College of Medicine. It’s rare when I give credit to JDRF, but they are funding this research. I am taking 500 mg per day.
Pycnogenol is the number one prescription for retinopathy in France. It contains a compound calkled oligomeric proanthocyanidin complexes (OPCs) which have shown to reduce microaneurisms in the eye in European studies. I am taking 200 mg per day.
I am not sold on natural remedies by any means, but I am anxious to see what my report from the retinologist is in September.
There are some folks with Type 1 posting on the Dr. Bernstein message board who are enthusiastic about benfotiamine.
Some people there also recommend a form of Alpha Lipoic Acid a supplement which, if I recall correctly, Dr. Bernstein states can increase insulin sensitivity in a Type 1. He recommends taking it with Evening Primrose Oil. There is one version of ALA that is supposedly more potent, but I can’t recall what it is.
Is it possible that with advancing age you are becoming more insulin resistant? If that is possible, could metformin perhaps make your insulin work better? I’m insulin sensitive, but when I take metformin I get much smoother blood sugars. The difference is between 4.5 units without Met and 3.5 units with to cover roughly 40 grams with, but the met stops the liver from dumping glucose at meal time and that really makes the blood sugars after meals a lot better.
I know this isn’t a treatment usually given Type 1s, but everyone gets more Insulin Resistant as they age, even normal people, so it might be something to thing about. Metformin is the longest tested, safest, diabetic drug.
Thanks, Jenny! I don’t think I’ve ever been to Dr. B’s message board and I’ll head over there now. I don’t think I’m insulin resistant–my daily dosage is around 35-38 units including the long-acting. That’s very interesting about the Metformin though.
Don’t you just love to “wait” - waiting for appointments, waiting for test results, waiting to see what happens next (blah blah blah).
Do you have macular edema? Just what did he mean by “deterioration”. Do you have proliferation? Is it near you macula?
I have been through some pretty major retinopathy but am still here, seeing the computer screen clearly.
Once I was in one of the exam rooms at my retina clinic and heard the doc talking to the patient in the next room about supplements for macular degeneration.
I asked him about me trying something similar and he said “no, that’s a whole different deal”.
Hello, Kathy: Glad to hear you’re hanging in there. The doc did not use the word “deterioriation”–that was my creative license! I have non-proliferative, no swelling (that’s edema, right?), but doc was concerned about the rate of progression. Ugh–I hate talking about this.
Oh damn, there’s always communication prolems with docs and everybody has a subjective interpretation of the situation.
That’s one of the reasons why I’ve kept the same retinal specialist for a few years - I know him well enough to interpret what he’s telling me (sometimes I can also just tell by the look on his face).
I would love to tell you not to worry but talk is freakin’ cheap. Yep, I hate talking about it too. I even hate going within a block of the eye clinic.
It’s this unknown stuff that makes me wanna run through the street screaming…
My opthal is a very large man who likes to snack on Cheetos. In fact, I think he chomps a few between every patient. Once he did not wipe his fingers and placed a hand on my temple to steady my head. When I came out, the receptionist said, “um, Kathy, you might want to go across the hall - you have a big orange streak on the side of your face.”
