Proliferative Retinopathy: is this the end?

[Purple_Panda]

So it appears I have proliferative retinopathy as per a recent diabetic eye screening. Just prior to that I had some images taken with a local optician. Both the optician and diabetic nurse appear to say this is "reversible with lifestyle changes", but I have been reading upon diabetic proliferative retinopathy and I am not so sure.

The screening letter said "your test result showed that you have proliferative retinopathy. This means there are serious changes to the small blood vessels in the retina at the back of your eye as a result of your diabetes and you are at risk of long-term problems with your sight."

I have been referred to a local hospital eye clinic.

The optician in his email to me with regards to the recent screening he did (which was about a month and bit prior to the diabetic eye screening): "the changes are concerning, but easily reversible with good diabetic control, a good diet and exercise, and that he had referred you via your GP to an ophthalmologist following your appointment and that you should hear from them soon."

I'm really deflated about this and not sure what to do.

Any advice?

 

[Wolder]

Hi @Purple_Panda,

Retinopathy can be reversed, sometimes completely, when BS levels return to normal (ie. non-diabetic) or near-normal levels. I have read Dr Richard Bernstein's 'Diabetes Solution' (which is primarily written with the T1 diabetic in mind, but not exclusively), in which he states that many of his patients had peripheral or proliferative retinopathy when they first arrived at his surgery, but were able to either fully or partially reverse the damage after 'normalising' their BS levels.

Anecdotally:

* When I went for my first eye screening back in January I asked the optician about retinopathy (I had just read Bernstein's book and was curious to find out if retinopathy was reversible, as he claims). He answered that it was, and in fact many of the T2 diabetics he screens who have managed to get the condition into remission have in some cases been able to undo very serious damage to their eyes.

* I am in contact with a T1 diabetic in their 60s (via. Reddit) who developed retinopathy after 15 years of poor control. Within 3 years the retinopathy had worsened to such a degree that they'd completely lost central vision in their left eye. They then read Bernstein's book, brought their BS levels under control over a six month period, and within a year had begun to undo some of the damage. They've been following the Bernstein regimen for almost four years now. All signs of retinopathy in their right eye have since disappeared, and whilst there is still some retinopathy in their left eye, they've almost entirely regained central vision.

* Another T1 diabetic who is a member of a local Facebook group for T1s mentioned in a post that with the help of the local diabetes team, she had been able to bring her HbA1c down to almost non-diabetic levels (she was wanting to get pregnant), and as a result her retinopathy disappeared during her pregnancy.

 

[Flower]

Hi @Purple_Panda

I'm sorry you've been diagnosed with proliferative retinopathy. It is frightening but there is so much that can be done, it's been picked up through screening and you've been referred to hospital ophthalmology who are the best people to help you get the best possible outcome.

There are various stages of proliferative retinopathy. If it is mild pre proliferative then tighter management of all the things we try to juggle with diabetes can help and it may not need treatment - blood glucose, blood pressure, cholesterol, weight, stopping smoking if you do. If you are trying to reduce your HbA1c do it slowly with medical advice as perversely a rapid decrease in HbA1c can speed up progression of retinopathy.

Please don't despair. I know how very frightening it is but the hospital will do everything it can to help maintain and preserve good vision. It's not the end, there is so much that can be done to help you. Early diagnosis from screening and timely referral to ophthalmology gives you the best outlook.

The hospital will advise you further and it may be that you need more frequent checks at the clinic to see what happens rather than any treatment. If you do require treatment it is not as bad in reality as it seems when you are told about it. Please let us know how you get on and wishing you well.

 

[Pumper_Sue]

So it appears I have proliferative retinopathy as per a recent diabetic eye screening. Just prior to that I had some images taken with a local optician. Both the optician and diabetic nurse appear to say this is "reversible with lifestyle changes", but I have been reading upon diabetic proliferative retinopathy and I am not so sure.

The screening letter said "your test result showed that you have proliferative retinopathy. This means there are serious changes to the small blood vessels in the retina at the back of your eye as a result of your diabetes and you are at risk of long-term problems with your sight."

I have been referred to a local hospital eye clinic.

Panic not (hard I know)
You have been given an apt so make sure you attend, you will have certain scans done which will decide whether you need some laser treatment. Again do not worry about this as all it does is seal off the leaky blood vessels which might be the end of it as far as treatment goes as long as you can keep your numbers within target.

I had some laser after cataract surgery about 6 years ago and have not had any since and that after having type1 for 57 years.
Your care will probably be at the hospital from now on where they can pick up problems very quickly and in this day and age it would be very rare for anyone to loose their sight as long as they play an active part in their management and care.
So please don't worry. (((((((((((((hugs)))))))))))))))

 

[Purple_Panda]

Thank you all for your advice.

For context I am 36 years old, my most recent HBA1C readings were 37/38/41/42. It was 102 when first diagnosed in September 2020.

I have my appointment with the consultant this Thursday. I will keep you posted.

 

[sugary123]

@Purple how did you get on with your appointments and treatment?? Super keen to hear how everything is?
I've been diagnosed with proliferative retinopathy In both eyes due PRP this week dr hasn't considered injections due to extensive proliferation
How is your peripheral and central vision now?

 

[Pumper_Sue]

@sugary123 purple panda hasn't been back since May last year hopefully all is well.