Retinopathy

[Charlie Tudgay]

To those who have been diagnosed with retinopathy. How soon after being diagnosed with type 1 diabetes were you diagnosed with the early stages of retinopathy? Also what was your average HbA1c?

I was diagnosed today but have low blood pressure, a HbA1c of 6.5% and only been diagnosed a year and 4 months, feel this is way to premature and don't know how to really control my bloods better than I already do without going hypo all the time and cutting out every food I like!!

Please advise

Thank you

 

[ButtterflyLady]

I don't have retinopathy and I'm not a T1 so I can't answer your question, but if I may, I have a couple of comments/questions...

It does seem unusual to have diabetic retinopathy if your HbA1c is 6.5% (48 mmol/mol) because that is the threshold at which the HbA1c becomes diabetic. I see you are 22 and have only been diagnosed as T1 for a short time. I have always thought that higher HbA1cs over a long period increases the risk of complications. What are your BGs like day to day?

It might be worth getting a second opinion on the diagnosis of retinopathy. What did the optometrist/opthalmologist/doctor say about it? Did they say it was retinopathy or the early stages of it, or early signs of it? Have you had a diabetic eye test before this? I wonder if retinopathy can be caused by something other than diabetes?

 

[Charlie Tudgay]

I don't have retinopathy and I'm not a T1 so I can't answer your question, but if I may, I have a couple of comments/questions...

It does seem unusual to have diabetic retinopathy if your HbA1c is 6.5% (48 mmol/mol) because that is the threshold at which the HbA1c becomes diabetic. I see you are 22 and have only been diagnosed as T1 for a short time. I have always thought that higher HbA1cs over a long period increases the risk of complications. What are your BGs like day to day?

It might be worth getting a second opinion on the diagnosis of retinopathy. What did the optometrist/opthalmologist/doctor say about it? Did they say it was retinopathy or the early stages of it, or early signs of it? Have you had a diabetic eye test before this? I wonder if retinopathy can be caused by something other than diabetes?

It is only the early stages but it shouldn't even be at that stage yet from what I know about it. I had a previous test a year ago and that was all clear. I am going to speak to my gp today and hopefully get booked in for a retest just to confirm either way.
My blood sugar has the occasional spike but for the most part it stays between 4 and 8.5mmol.

 

[ButtterflyLady]

It is only the early stages but it shouldn't even be at that stage yet from what I know about it. I had a previous test a year ago and that was all clear. I am going to speak to my gp today and hopefully get booked in for a retest just to confirm either way.
My blood sugar has the occasional spike but for the most part it stays between 4 and 8.5mmol.

I agree, it is strange to say the least. Good idea to speak to your GP and ask for a re-test. Your eye doctor may know of other cases like yours and hopefully be able to shed some light on why this has happened.

 

[noblehead]

Hi @Charlie Tudgay,

I was diagnosed with retinopathy after 15 years, it was monitored for a while and eventually it developed to Proliferative Retinopathy were I needed treatment. At diagnosis my HbA1c was around 7.5- 8 and was told to get this below 7 to reduce further damage, I've now been clear of any problems for the last 10 years but still have regular check-ups at the Ophthalmology clinic in case it ever rears its ugly head again.

Some people do get told that they have background retinopathy only for it to disappear where others are unfortunate and it progresses to the next stage, but much can be done to prevent it progressing like controlling your bg levels (keep the swings from high to low's to a minimum) and keeping your bp under the recommended guidelines, also you should try and keep your cholesterol levels in check as well as making sure you eat a diet rich in fruit & vegetables (the darker the colour the better it is for eye health I was told).

The following website has a wealth of information and advice on diabetic retinopathy and I suggest you have a good read around it:

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

Good luck and hope all works out well.