From Amsterdam, The Netherlands:
I have had type 1 diabetes for almost 21 years and am 22 weeks pregnant with my first child. Just before becoming pregnant, my A1c was 9.9%, however, tightening my control on finding I was pregnant has lowered this to 6.9% in a three month period. Just this week, I was diagnosed with diabetic retinopathy. The three doctors who examined my eyes stated that they had never seen the blood vessel pattern that is showing in my eyes. They have said that I have bleeding behind both eyes, distended blood vessels, debris at the rear of my left eye and an unusual pattern to the blood vessels. They state that this is solely down to my diabetes, however, I have never suffered any eye problems until my pregnancy. I am now suffering from significant vision loss and find it difficult to focus; it's like I am missing chunks from my sight.
Are there any studies into type 1 diabetes, pregnancy and rapidly advancing retinopathy? As my doctors said that they had never seen this before, I am concerned about their treatment of my condition and I don't want to lose my sight whilst they try to figure out what is going on. They are not wanting to see me again for two months, which I feel is too long to wait especially considering this is now stopping me from working. Can you help me at all?
Worsening of diabetic retinopathy is quite common in patients with type 1 diabetes who become pregnant, as is worsening of retinopathy with sudden improvement in blood glucose control as reflected by a lower A1c (especially in patients where the A1c drops more than 3% in any two-year period; as you say, yours dropped by 3% in a mere three months). Tight blood sugar control is imperative to prevent fetal injury, however, and is best achieved well before patients become pregnant to minimize worsening eye disease. Unfortunately, this was not possible in your case.
Your best course of action is to make sure you are seen by a retinal specialist and receive treatment (laser photocoagulation) for any vision threatening retinopathy as soon as possible (proliferative diabetic retinopathy and/or clinically significant macular edema). Whether or not two months is too long to wait depends totally on your current retinal status but, I recommend you get seen within a month.
Additional comments from Dr. Bill Jones:Your primary risk factors for retinopathy are long-standing diabetes and the elevated hemoglobin A1c as a marker for persistent hyperglycemia. Pregnancy is also a risk factor for progression of disease as is the stage of retinopathy at the time of conception. Since you appear to have severe retinopathy, consulting with an ophthalmologist with expertise in this area is important. Laser treatment may be indicated at this time, particularly since you are at risk of the condition getting even worse. After the baby delivers, about half of women with severe retinopathy may expect partial regression and 25% have no change. A smaller percent have complete regression.
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