Maculopathy, frightened and confused

[JennR]

Hi, I am going through the mill a bit at the moment, I hope someone can provide me with a little reassurance.

I had no idea I could be diabetic until March of this year until a routine eye test and OCT scan. The optician said she could see pre-proliferative changes in my eyes and said she would refer me to the hospital. My GP was also to check me for diabetes and high blood pressure. This frightened me a lot so I immediately went on a low carb diet and when my doctor tested my HbA1c it was 47 which she said was in the pre-diabetic range. It may however have been much higher previously - we don't know how high and how long.

The hospital referral never materalised - despite ringing them they said no appointment has been made. Under the new system a consultant refers all cases and decides who needs to be seen and who doesnt. But although the referral was on the system it had not been actioned.

Fast forward to this week and I had my first retinopathy screening and got the results today and I have maculopathy. I have been referred to the eye hospital for assessment.

Right now I am terrified. No mention was made of maculopathy on the original referral letter in March and it would have shown on the OCT scan. I wasn't warned of the dangers of reducing my blood sugar too quickly - either by the optician or the GP.

Since receiving the letter I just feel sick and have been in tears. My mental health is not good at the moment anyway and tbh I just feel like it would be better if I wasn't here. All I can see in my future is blindness. Can anyone give me any hope?

 

[Jaylee]

Hi, I am going through the mill a bit at the moment, I hope someone can provide me with a little reassurance.

I had no idea I could be diabetic until March of this year until a routine eye test and OCT scan. The optician said she could see pre-proliferative changes in my eyes and said she would refer me to the hospital. My GP was also to check me for diabetes and high blood pressure. This frightened me a lot so I immediately went on a low carb diet and when my doctor tested my HbA1c it was 47 which she said was in the pre-diabetic range. It may however have been much higher previously - we don't know how high and how long.

The hospital referral never materalised - despite ringing them they said no appointment has been made. Under the new system a consultant refers all cases and decides who needs to be seen and who doesnt. But although the referral was on the system it had not been actioned.

Fast forward to this week and I had my first retinopathy screening and got the results today and I have maculopathy. I have been referred to the eye hospital for assessment.

Right now I am terrified. No mention was made of maculopathy on the original referral letter in March and it would have shown on the OCT scan. I wasn't warned of the dangers of reducing my blood sugar too quickly - either by the optician or the GP.

Since receiving the letter I just feel sick and have been in tears. My mental health is not good at the moment anyway and tbh I just feel like it would be better if I wasn't here. All I can see in my future is blindness. Can anyone give me any hope?

Hi @JennR ,

Welcome to the forum.

Sounds like you are getting your BGs managed. & yep, I got caught out with macular edema after pulling my socks up & thinking I’d dodged retinopathy for years.. (The news I had was a bolt from the blue..)

looking at your profile. We are in a similar age group.
Don’t feel disheartened by the results of your scan. Not knowing can be daunting. But there are some great treatments out there, should you need it?

let’s just say, I’m still entitled to drive & no more zooming of text on my devices.

 

[JennR]

Hi @JennR ,

Welcome to the forum.

Sounds like you are getting your BGs managed. & yep, I got caught out with macular edema after pulling my socks up & thinking I’d dodged retinopathy for years.. (The news I had was a bolt from the blue..)

looking at your profile. We are in a similar age group.
Don’t feel disheartened by the results of your scan. Not knowing can be daunting. But there are some great treatments out there, should you need it?

let’s just say, I’m still entitled to drive & no more zooming of text on my devices.

Thank you I'm glad you had a good result.

 

[Jaylee]

Thank you I'm glad you had a good result.

I feel once you’ve had further assessment on your condition, it may empower you regarding more positive plans.?

A few years back I was ready to hand in my van keys & jack in the music. Keep your “cup half full.”

 

[Emck]

@JennR I have had maculopathy flagged twice on routine screenings. The first time, I was brought up to the hospital and taken through all of the in depth tests. At the time they were happy that there was nothing to be concerned about - it was some slight leakage near the centre of my vision. I have since had a screening that flagged background and then another that showed maculopathy again. I was gutted as I have been working so hard with my BG levels.

On talking to the consultant, she was happy that there was nothing to be worried about and that I should just be kept under observation and more regular screening.

It’s important to remember that the screening picks up the most minute changes because they want to catch these things early as they are easier to fix at that stage.

I was just like you when I got my first maculopathy letter back - so worried. The hospital trip reassured me that I was in the care of the best team. If you need any treatment, you’ll get it at the hospital. If not, at least you will be able to relax a bit.
Keeping your BG levels stable will really help you in the long run. Keeping blood pressure down and not smoking are also good for eye health.

 

[JennR]

@JennR I have had maculopathy flagged twice on routine screenings. The first time, I was brought up to the hospital and taken through all of the in depth tests. At the time they were happy that there was nothing to be concerned about - it was some slight leakage near the centre of my vision. I have since had a screening that flagged background and then another that showed maculopathy again. I was gutted as I have been working so hard with my BG levels.

On talking to the consultant, she was happy that there was nothing to be worried about and that I should just be kept under observation and more regular screening.

It’s important to remember that the screening picks up the most minute changes because they want to catch these things early as they are easier to fix at that stage.

I was just like you when I got my first maculopathy letter back - so worried. The hospital trip reassured me that I was in the care of the best team. If you need any treatment, you’ll get it at the hospital. If not, at least you will be able to relax a bit.
Keeping your BG levels stable will really help you in the long run. Keeping blood pressure down and not smoking are also good for eye health.

Thank you so much, that has really helped me to feel a bit more positive. Thanks for sharing your story

 

[MAW8]

Hi, I am going through the mill a bit at the moment, I hope someone can provide me with a little reassurance.

I had no idea I could be diabetic until March of this year until a routine eye test and OCT scan. The optician said she could see pre-proliferative changes in my eyes and said she would refer me to the hospital. My GP was also to check me for diabetes and high blood pressure. This frightened me a lot so I immediately went on a low carb diet and when my doctor tested my HbA1c it was 47 which she said was in the pre-diabetic range. It may however have been much higher previously - we don't know how high and how long.

The hospital referral never materalised - despite ringing them they said no appointment has been made. Under the new system a consultant refers all cases and decides who needs to be seen and who doesnt. But although the referral was on the system it had not been actioned.

Fast forward to this week and I had my first retinopathy screening and got the results today and I have maculopathy. I have been referred to the eye hospital for assessment.

Right now I am terrified. No mention was made of maculopathy on the original referral letter in March and it would have shown on the OCT scan. I wasn't warned of the dangers of reducing my blood sugar too quickly - either by the optician or the GP.

Since receiving the letter I just feel sick and have been in tears. My mental health is not good at the moment anyway and tbh I just feel like it would be better if I wasn't here. All I can see in my future is blindness. Can anyone give me any hope?

Hi, I'm not sure whether you have already been seen by the hospital. Maculopathy can been worrying, but is often reversable. Dropping your HbA1c has temporarily worsened your retinopathy, but at this stage your eye can still heal. Keep working at your HbA1c. If necessary the hospital will treat the maculopathy. We often see that patients have maculopathy and after a while it disappears again.

 

[Koalajane]

I have macular oedema and do all I can to keep my sugars stable. My hba1c is 36 but I have sugar spikes due to the steroids I am on for Polymyalgia Rheumatica. I have regular treatment that keeps it stable.