Maculopathy

[Sprogladite]

I had an eye screening on Thursday last week. This appointment was an "extra" after my annual review screening showed signs of maculopathy. Today I received the dreaded letter stating my results show signs of maculopathy that need to be checked further. This time they want to see me in 3 months instead of 6.

I'm not gonna lie, I am upset. I've worked so hard to bring my hba1c down over the last year and it really feels like I'm doing it for nothing at this point. The letter says I'm being referred to a surveillance screening pathway. What does this actually mean?

There is no indication of how severe this problem is on the letter or whether I'll require any sort of treatment. Is maculopathy reversible?

Losing my eyesight is literally my biggest fear and I'm aware I'm probably over reacting to this as a result of this. I guess I just need someone to talk me down and stop me freaking out

 

[Flower]

Hello Sprogladite,

It is very worrying to receive such a letter but there is every reason to be optimistic. The surveillance screening pathway is where you need more frequent monitoring in addition to the annual retinopathy screening programme to keep watch on early changes to the macula. It doesn't necessarily mean you need any treatment but even if that should ever happen there are some fantastic drugs and or laser for treating maculopathy. The need for more frequent checks is to prevent things getting worse and if your sight is good at present there's every reason for it to stay that way. Mild maculopathy can be slowed down and settle without any treatment.

It is all very frightening, I know from my experience how all consuming the worry can be but they are on to you very early and the whole focus is to prevent anything from deteriorating. The digital surveillance pathway is for early maculopathy to be monitored. If things remain stable you are put back on the annual retinopathy screening, or if necessary you are kept on the surveillance pathway and seen at regular intervals. Should any treatment be required you are referred to the appropriate clinic.

The fact that the appointment is not for 3 months would suggest that it is a case of extra monitoring. All the hard effort to reduce your HbA1c is never in vain, it helps massively to limit any changes. Have your diabetes team advised you how best to lower your HbA1c as too rapid an improvement can perversely increase micro changes in the retina..Keep doing all the stuff to keep your diabetes, blood pressure, cholesterol etc stable and hopefully at the follow up appointment in 3 months the early changes in your macula will have settled.

I wish you well.🙂

 

[Amigo]

I had an eye screening on Thursday last week. This appointment was an "extra" after my annual review screening showed signs of maculopathy. Today I received the dreaded letter stating my results show signs of maculopathy that need to be checked further. This time they want to see me in 3 months instead of 6.

I'm not gonna lie, I am upset. I've worked so hard to bring my hba1c down over the last year and it really feels like I'm doing it for nothing at this point. The letter says I'm being referred to a surveillance screening pathway. What does this actually mean?

There is no indication of how severe this problem is on the letter or whether I'll require any sort of treatment. Is maculopathy reversible?

Losing my eyesight is literally my biggest fear and I'm aware I'm probably over reacting to this as a result of this. I guess I just need someone to talk me down and stop me freaking out

It’s terrifying to receive those letter Sprogladite and I too live in fear of sight problems. I’m presently in need of cataract surgery and have a severe dry condition that I need to see an Opthamic Surgeon about from time to time. He told me to take a Lutein Eye Supplement and I take one daily (from Holland and Barrett or other stores). Lutein is necessary for macular health and is often found to be low in macular eye conditions. My mother has macular degeneration and even her Opthamologist suggested it to me. He also took it because his father had AMD.

Sending best wishes and wishing you well but as Flower has said, it’s just surveillance presently and there’s no need for serious alarm.

 

[Sprogladite]

Thank you both, I have calmed down a little now. It has been a long day today and coming home to that letter after work pushed me to the edge for a while there.

The diabetes team have advised me about lowering hba1c and have explained that rapid changes can do damage too. It is just so frustrating, I've managed to get my hba1c down from 126 2 years ago to 49 now and it's been during this time the maculopathy has presented. I also went to the London clinic and had several scans and tests done after my first maculopathy result, who told me I had background retinopathy and absolutely no maculopathy which had gotten my hopes up that this check would be clear. I've also recently been taken off statins (as I'm only 29) as consultant thought I was too young to be on them - despite being put on them at 17! My most recent cholesterol test wasn't the best so I'm a little concerned about that. I will ask my team about it.

I guess all I can do is keep on keeping on and hope they give me a pump before any serious/permanent damage is done.

Thank you both for taking the time to reply, I really do appreciate it x

 

[Lucy Honeychurch]

I'm sorry to hear this @Sprogladite (((hugs))) hopefully it's been picked up in the early stages x

 

[Sprogladite]

I'm sorry to hear this @Sprogladite (((hugs))) hopefully it's been picked up in the early stages x

Thanks Lucy, if not I'm sure I'll be on here crying about it lol x

 

[Northerner]

I had an eye screening on Thursday last week. This appointment was an "extra" after my annual review screening showed signs of maculopathy. Today I received the dreaded letter stating my results show signs of maculopathy that need to be checked further. This time they want to see me in 3 months instead of 6.

I'm not gonna lie, I am upset. I've worked so hard to bring my hba1c down over the last year and it really feels like I'm doing it for nothing at this point. The letter says I'm being referred to a surveillance screening pathway. What does this actually mean?

There is no indication of how severe this problem is on the letter or whether I'll require any sort of treatment. Is maculopathy reversible?

Losing my eyesight is literally my biggest fear and I'm aware I'm probably over reacting to this as a result of this. I guess I just need someone to talk me down and stop me freaking out

Hi Sprogladite, try not to be overly-concerned, although I can appreciate it is an anxious time for you. A couple of years after my diagnosis I was diagnosed with macuopathy - this is when the abnormal blood vessels and leaks occur close to the macula, and are therefore more serious than background retinopathy which occurs further to the edge of the retina. At one point I had a tiny amount of laser on one eye, but since then I have been diagnosed with DMO (Diabetic Macular Oedema, which is leaking of fluid beneath the retina). I have to go to the Eye Hospital every 4 months for a check - they have more accurate equipment for taking the photographs and measurements than the 'bog-standard' retinopathy checks, plus I get to see a consultant who manually examines my eyes in case there is anything not showing clearly on the pictures. To date, my DMO has remained 'stable' and is below the level where any treatment is deemed necessary - as I said this has been the case for at least 3 years, so it's more than possible for it to remain as it is now. Should it progress then there are some excellent treatments available, and although any sort of treatment for the eyes can be a bit fear-inducing, I'm buoyed by the fact that other members have experienced it without problems, so I try not to worry about it until required - if it is required, which it may never be fingers crossed 🙂

As you may be aware, my HbA1c is hideously impressive and has been since diagnosis, so it's really just bad luck when this happens. The main thing I take away is that it is even more important to do everything I can to maintain that good level, as well as cholesterol and blood pressure which can also be risk factors. I'm thankful that this level of care is available to me, it wouldn't have been not that long ago! 🙂

Good luck, I hope your appointment goes well 🙂

 

[Sprogladite]

Thank you @Northerner, I spoke to someone on the eye screening programme this morning who told me that it's in both eyes but that I shouldn't panic as if there was a serious issue I'd be referred straight to the hospital. She also stressed that the NHS will always err on the side of caution so it is entirely possible that the next screening could show clear (which made me feel a little better, as the first time this happened I went for private tests at the London clinic which showed no maculopathy). I think I'm doing ok on the hba1c side of things (especially considering the ongoing problems I've had finding a suitable basal) and last blood pressure check was 130/80 so not worried about that either. Slightly concerned with cholesterol as that's something like 5.2 at the moment (can't remember the exact ratio but it wasn't wonderful) and I've just been taken off statins which I don't see ending well as I have a long family history of high cholesterol. Something to discuss with the DSN I guess!

 

[Northerner]

There are some alternatives to statins, so if it becomes a problem you should have more options 🙂

 

[Sprogladite]

There are some alternatives to statins, so if it becomes a problem you should have more options 🙂

Yes, I've sent an email off to the team so will see what they say. The one I was on was actually causing a significant amount of pain in my hips which is now completely gone so would rather not go back on it if I can help it!