Diabetic retinopathy at 38!

J

jesslb

Member
Relationship to Diabetes
Type 2
Hi All, One stressed out lady here!

So I was diagnosed diabetic in March this year. After 3 months I got my hba1c back into prediabetic range, from 63 to 46 (I think). I have been pre diabetic for a couple of years, so I know I haven't had diabetes lingering undetected for years.

So, I had my first diabetic retinopathy screen last month, I wasn't worried at all. But yesterday I had a letter saying my scans 'show some retinopathy'! How has it developed so quickly. I'm 38 and I'm now terrified that having it so early means I might go blind.

Has anyone else been through anything similar?

Thanks, Jess
 
jesslb said:
Hi All, One stressed out lady here!

So I was diagnosed diabetic in July this year. After 3 months I got my hba1c back into prediabetic range, from 63 to 46 (I think). I have been pre diabetic for a couple of years, so I know I haven't had diabetes lingering undetected for years.

So, I had my first diabetic retinopathy screen last month, I wasn't worried at all. But yesterday I had a letter saying my scans 'show some retinopathy'! How has it developed so quickly. I'm 38 and I'm now terrified that having it so early means I might go blind.

Has anyone else been through anything similar?

Thanks, Jess
Click to expand...
In a word yes, then the next test after 1 year all is normal. That does seem to happen to quite a few people. However the message is that keeping your blood glucose well managed will help to make that happen.
If they were concerned than you would normally be told you would need another screening test is 6 months rather than a year.
 
Aw thankyou, that is reassuring. Yes the letter said 1 year so they can't be too concerned.
I would normally discuss it with my diabetic mum but she is on holiday and I didn't want to worry her while she was away
 
@jesslb welcome to the forum. I have seen several threads on this where people have been concerned at letters indicating some damage but following test seems to have resolved. I was diagnosed in July but don't know how long ive had it. In 2014 I was tested for diabetes and recorded 40 which is not even prediabetic [ though I wasn't told that I'd been tested]
I'm awaiting a cataract op. Since being put on the waiting list in February I have been diagnosed diabetic. When I saw consultant at the end of August she said they wouldn't be able to say when 8 became diabetic but damage didn't show until there had been diabetes for ten years. She is a consultant and is probably referring to more than background retinopathy.
I have an autoimmune eye disease which means over the years my pupils have stuck down. If i have flare I use steroid eye drops. Apparently the combination of stuck down pupil and cataract means they cannot see the back of my eye. Hopefully I won't get bad news. The threads I have seen suggest if your next appointment is a year away it is routine if it is an earlier date there may be something they need to check more carefully but can still be treatable. Do check the earlier threads and good luck
 
Thankyou for replying and I'm so sorry about what you are going through. I really hope it doesn't progress for you.
 
I am not aware I have retinopathy but was trying to ascertain when I became diabetic.My first hba1c was 69 at end of June which makes me think it was a minimum of a year maybe longer. When I asked the consultant i wasn't aware my surgery had tested me in 2014. I knew I was clear when the hospital tested me in 2009. I'm just relieved the cataract op will mean they can see back of my eye. I haven't had a retinopathy check. However I do get an eye scan if I have a flare up but don't know if that shows retinopathy.
 
Retinopathy letters are scary they just say you have it or not and thats it.
Unless there is a major problem and they then ask you to go back for another photo shoot.
Next time you see your nurse ask what numbers they have for it they 'mark' each eye out of 6 (good) then down the number goes, at the moment mine is 6 left 5 right, last year it was 5/5 so Retinopathy present but not a problem.
Hope this and other replies helps to ease your worries.
 
Sorry to hear you’ve had The Scary Letter Of Doom @jesslb

They really should find ways to communicate those results without scaring the pants off people!

As you’ve said, a review in 12 months suggests they are not immediately concerned. If the letter refers to ‘background changes’, these are usually very small, and many members over the years have had a sequence of ‘background’ and ‘all clear’ results, or simply ‘background’ that stayed as ‘background’.

Sometimes the big changes people make after their diagnosis to try to pull their BGs into line can result in temporary / transient changes to the back of the eye.

Just keep trying to maintain as steady, even and ‘in range’ BG levels as you can, and hopefully you’ll get some reassurance in 12 month’s time 🙂
 
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