I am 39 years old and had an a hemicentral retinal vein occlusion on November 9th. I never had any health issues before. My BMI is 22.7. In the process of finding out why it happened, my HbA1C was first tested on November 27th and it was at 11.5%. In early December the following blood tests were done, but I didn’t get the results until the 22nd. When the blood samples were taken, I was also tested for ketones and this test was negative. My diabetologist said at the time when the samples were taken that he expects my C-Peptides to be extremely high.
The diabetologist then concluded that since the Insulin-Receptors I were positive I must be a type 1. He scratched his head when I asked him about the C-Peptides.
Another HbA1c sample was taken on January 6th and it already went down to 6.9%. I have changed my eating habits thanks to myfitnesspal and I am walking about 10k steps per day ever since I had the eye stroke. I am taking 8 units of Lantus since the diagnosis on December 23rd. I found out that when I walk about 2 miles at about 2.3 mph immediately after food, my BG is always between 100 and 140 one hour after the meal. Taking magnesium before a meal also prevents spikes. Without activity, it is between 140 and 180. If I walk faster (i.e. 3.7 mph) my BG is about 160 one hour after the meal. My fasting BG is between 90 and 100. I can easily get BG values of about 60 without noticing during the day. The diabetologist however said I should try to avoid BG < 80 due to prevent complications with my eye.
So my initial question is: Am I really a type 1? Are these blood results meaningful enough or are there any other tests I should be looking for?
What is insulin receptor 1? Is that a synonym for insulin receptor substrate 1 (IRS1)? Or is it anti-insulin receptor antibody? I can’t find this anywhere on the web.
You indeed have an interesting case. If you are not T1 you may be T1.5? Not being a doctor or an endocrinologist, I would suggest the following 2 additional steps:
Stop taking insulin and do a glucose tolerance test
Get a second opinion from an Endocrinologist.
I really don’t know that a Hemi-Central Retinal Vein Occlusion is caused by diabetes. Did you have surgery?
No, there is no surgery for Hemi-Central Retinal Vein Occlusions. All you can do is wait and hope that the thrombosis goes away without bleedings or a macular edema due to unstable neovascularisations. Getting an anticoagulation agent may help to increase blood flow and resolve the thrombosis, but it elevates the risk of bleedings. I was prescribed 100mg of Aspirin and I have to do blood letting every week.
4 weeks after the occlusion I had an edema and was scheduled an anti-VGEF injection into the eye. The day for when the injection was scheduled, just hours before the injection, I had a massive bleeding into the eye and it became blind for two days. Doctors couldn’t run any diagnostic tests, because they couldn’t see through the eye anymore, as everything was full of blood. I got the $2000 injection nonetheless as scheduled and I guess this helped tremendously to shorten the phase of blindness, as I read reports of people where it took weeks to months until they could see things again. Strings of blood are still floating in my eye and they affect my vision. When they don’t cover the focus, I have 125% vision and I don’t see any signs of the edema any longer.
Doctors also disagreed on how to proceed with the anticoagulation and the follow up therapy. One doctor said she would recommend to drop the Aspirin and wait for a few weeks to see if the eye reabsorbs the blood on its own while BG levels are normalized, another doctor said he would recommend immediate surgery. A third doctor said I would have to weigh the risks: a) Would I prefer to risk that I get another thrombosis elsewhere in my body or b) Would I risk more bleeding into the eye.
So I stopped taking aspirin, waited a few days, started over and immediately got another bleeding. I redid it once more and had yet another bleeding the same day. Then I decided to switch to 81 mg of Aspirin and knock on wood I have had no further bleedings for the last 10 days. I have my next appointments at the diabetologist tomorrow and at the university’s eye clinic next week.
I’m not a c-peptide expert, because they weren’t doing those tests yet back when I was diagnosed. Good ol’ WebMD says, “A C-peptide test can be done when diabetes has just been found and it is not clear whether type 1 diabetes or type 2 diabetes is present. A person whose pancreas does not make any insulin (type 1 diabetes) has a low level of insulin and C-peptide. A person with type 2 diabetes can have a normal or high level of C-peptide.” So either you are Type 2, or in the very early stages of Type 1 where most of your beta cells are still functioning. Most Type 1’s are diagnosed before the age of 25, but there are exceptions. You might want to look up LADA diabetes (latent onset), which some people call Type 1.5 for lack of a better term.
Still, I would think your A1C would not be that super high if you were still producing a lot of your own insulin. I would say a 2nd opinion would be in order so you can get some answers, or at least some clarification of what to watch for over the next few months. If you are Type 1, your c-peptide numbers should dive pretty steadily within this next year.
Once you start insulin therapy your c-pep test could be normal to low, since your body will only supplement the insulin you are injecting if you blood sugar is normal and it won’t tell if you are t1. Your body will not stop making insulin (if it can make insulin) if you continue insulin therapy. If you are type 1, expect that over the next few years you will also need more long acting insulin and you will need to start meal-time insulin. Rather than being in a rush to make a definitive diagnosis, my guess is the doctors will try to stabilize symptoms.