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Surprise background retinopathy diagnosis - scared

T

t1_lada_32

Newbie
Messages
3
Type of diabetes
Type 1
Treatment type
Insulin
Hi. I was diagnosed with Late T1 in November last year out of the blue. My hba1c was 88.

I quickly got it down to 44 and have kept it there since.

I had the results of my first retinal screening in the post today and it says background retinopathy. It doesn't specify in the text but I think it's just one eye - one is R0 one is R1.

I'm really worried about it to be honest. I'm only 32 and to get this at my first screening... also just became a father for the first time a month ago. I just don't know what to do. If it's a control issue but my hba1c is 44... how does that work? Do I have any hope of reversing it in those circumstances?

Has anyone been through anything similar?
 
There are MANY stories of success with treatments for BR. This site has a lot of testimonials to that effect. Don't hit the panic button just yet as (based on time) that's a big drop in BG and eyes need to adjust, Great strides have been made in the field so relax a bit
 
Yes, my Dad (also diabetic) got his eyes lasered for some quite severe retinal bleeding, and they sealed him up brilliantly, and the operation was a lot easier and less stressful than he thought. He hates operations and especially hospitals with a violent phobia, but he was so full of praise for the doctors, staff and treatmentIn his case, it turned out the bleeding was related to another medical issue, but where it might be relevant in your case is that the retinopathy treatment itself is fast, efficient and really good at arresting damage. I don't know what treatment you may need, but like Mike says above, great strides have been made- certainly in the UK, the treatment seems to be absolute top notch. Good luck with it!
 
Understand you are worried but try not to worry, some members here have been told they have BR only to be told at their next eye screening that its disappeared, obviously this isn't the case with everyone but there's much you can do to prevent the condition from progressing.

Just continue keeping your diabetes under control and make sure that your bp and cholesterol are monitored and controlled to, it says all this in the following website:

http://www.diabeticretinopathy.org.uk/back_diabetic_retinopathy.html

Some info on terms used in grading diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/gradingretinopathy.htm

Best wishes.
 
Please bear in mind that no screening method can ever be 100% accurate and there will always be false positives and false negatives. A good screening service could have as many as 5% of people without sight-threatening retinopathy mis-identified as having it. Screening results should never be considered as a 'diagnosis' but an indication of whether or not further tests are needed by an ophthalmologist.

As the aim of diabetic eye screening is to detect sight-threatening diabetic retinopathy. The standards for minimising false positives do not apply to the detection of background retinopathy and the percentage of people falsely identified as having BDR is likely to be much higher. There are a number of features that can be confused with diabetic retinopathy such as areas of pigment, unusual appearance of vessels or retinal haemorrhages occurring for another reason which is not diabetes. The more screenings someone has, the more possible it is to identify confounders for diabetic retinopathy so someone can go from 'background retinopathy' to 'no diabetic retinopathy' even if there has been no visible change.

Background retinopathy generally takes at least 5 years to develop. In people with type 1, where onset of diabetes is identified very rapidly, it is very unlikely for background retinopathy to be present at the first yearly screening. (This is unlike type 2 diabetes where people may have had diabetes for several years before they are diagnosed so a good proportion of them have diabetic retinopathy at their first screening.) If you are genuinely type 1, I would treat your result with some skepticism.

In any case, background retinopathy does not affect your sight and the risk of progression to sight-threatening retinopathy is much reduced by maintaining good diabetic control.
 

Thanks for the detailed response. I had previously heard that screening normally doesn't start for five years per your comment so that was another factor in my 'surprise'. I don't absolutely know if I'm T1 but think it's highly likely given my fitness level, a normal BG result in a random gym test 1 year before diagnosis and the limited pancreatic function/low cholesterol. I do wonder tho and find my local health team nice / caring but somewhat blasé and unwilling to entertain anomalies. Again, thanks for the considered response.
 
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