Maculopathy Letter - What Next?

[jodysd6]

So I am trying very hard not to panic because I know the whole point of screening is to spot things early, but I have to admit it is scaring me a little.

I have had type 1 for 17 years and am 32. I have had very poor control in my younger years and generally have only had reasonable control over the last couple of years once I had Libre then Dexcom. The last couple of years my annual screening had background retinopathy. Last year they spotted some sort of lesion on optic nerve which wasn’t diabetes related so I saw eye clinic but they weren’t concerned and said just to see if anything changed. This year that hasn’t been mentioned so assume that that has resolved or was insignificant. I got results through on Friday for latest screen and they have said there are signs of maculopathy and I need to be seen in surveillance clinic in 3 months. I had actually already booked an eye test for next week with my regular optician as it was both due (i’m Pretty short sighted anyway) but i’d also noticed at times I was having to peer over top of top of glasses and was struggling with some labels etc, but this has not been all the time.

I guess i’m Just looking for experiences on what to expect next since I know i’m Going to be waiting 3 months for an update. I know it can’t be that urgent or would have been referred. I suppose i’m wondering how likely it is to need some form of treatment, and if this could be in a few months or could it be months/years, or could it just resolve and be nothing in 3 months time.

Just to add my blood pressure is fine/borderline low, I am now using Dexcom G6 and omnipod and trying to keep sugars as perfect as possible, only thing was a couple of months ago total cholesterol was 5.0 but nurse said as I was young not to worry about that, is that something that should be treated?

 

[Mike d]

Tagging @Dark Horse for you .... but it's late your way so you might have to wait

 

[Dark Horse]

So I am trying very hard not to panic because I know the whole point of screening is to spot things early, but I have to admit it is scaring me a little.

I have had type 1 for 17 years and am 32. I have had very poor control in my younger years and generally have only had reasonable control over the last couple of years once I had Libre then Dexcom. The last couple of years my annual screening had background retinopathy. Last year they spotted some sort of lesion on optic nerve which wasn’t diabetes related so I saw eye clinic but they weren’t concerned and said just to see if anything changed. This year that hasn’t been mentioned so assume that that has resolved or was insignificant. I got results through on Friday for latest screen and they have said there are signs of maculopathy and I need to be seen in surveillance clinic in 3 months. I had actually already booked an eye test for next week with my regular optician as it was both due (i’m Pretty short sighted anyway) but i’d also noticed at times I was having to peer over top of top of glasses and was struggling with some labels etc, but this has not been all the time.

I guess i’m Just looking for experiences on what to expect next since I know i’m Going to be waiting 3 months for an update. I know it can’t be that urgent or would have been referred. I suppose i’m wondering how likely it is to need some form of treatment, and if this could be in a few months or could it be months/years, or could it just resolve and be nothing in 3 months time.

Just to add my blood pressure is fine/borderline low, I am now using Dexcom G6 and omnipod and trying to keep sugars as perfect as possible, only thing was a couple of months ago total cholesterol was 5.0 but nurse said as I was young not to worry about that, is that something that should be treated?

Surveillance clinics are used to monitor small changes which are not affecting vision but which shouldn't be left unchecked for a whole year in case they get worse. Although you say you are having some problems with eyesight, that may just mean that you need new glasses. The screening uses a 'pinhole' test if the visual acuity is low, as the pinhole will work even if the glasses are out of date. It's standard for the first appointment to be after 3 months but if the change remains stable, the interval can be extended. For some people, the changes eventually resolve and they are returned to annual screening. For others, the changes get worse and/or vision starts to be affected - in which case they will be referred to ophthalmology for further tests to see whether treatment is necessary.

The best way to lower risk of progression is to continue to keep good diabetic control. There is more information here:-
http://www.diabeticretinopathy.org.uk/prevention/targetsummary.htm

 

[jodysd6]

I am somewhat reassured that it only requires surveillance, and will still be seeing optician as like you say I may just need new glasses or reading glasses. Do you think I should contact Gp’s about cholesterol though? I’m generally not keen on unnecessary medication but total cholesterol was 5 and the ratio was 4.2 and i’m Willing to try anything that could help stop it getting worse.

 

[FantomPoet]

I received a similar letter in 2013 and went onto a 3 month cycle of surveillance for a Diabetic Macular Oedema which for a long time stayed stable and a couple of checks seemed to improve. Last year there was a change of staffing at the eye hospital so I had my consultant changed. They stated that although stable they would like to look at using injections to improve the situation as there was a slight kink in my vision this being a small patch of soft focus compared to the rest of my field of view. So I agreed to a course of Eyelea injections during 2017, at the time a very scarey proposition. The reality of the injections is that you see or feel practically nothing nothing of the procedure and the thought was far worse than the reality.

I should add that I had also some light background retinopathy as well at the time of being put onto surveillance. So injections were only for a particular leak in my right eye. The results have been terrific I no longer have the kink and going for new glasses this weekend the optician questioned previous notes on the Retinopathy as she could see none.

I have been strict with my BS control over the years and tried to keep them in the non diabetic range so it has paid off. I am back to the eye hospital in two weeks (to the day) for another check up but all has been sweetness and light for the checks I have had this year.

When I first received the letter I was despondent then after many 3 month visits I grew to wonder if there was a method of opening up the time period of the appointments as the fear had left as stability became the norm. Then the option of the injections came up although I had been told previously that the funding wouldn't be available due to the severity was not great enough and I took it (grabbed it with both hands) and I have been really happy with the results as has been the consultant.

I would iterate the Maculopathy affected a small patch in my field of vision so it sounds like you may need a new set of glasses. In the time I have been under supervision I have had several new pairs all drifting in prescriptions being lighter and lighter each time.

There are several options for treatment if you end up needing some I made a few nodding acquaintances in the eye hospital as many of you end up going on the same day every three months and several no longer need to go and are back on the 12 months check with a normal optician as their DMO sorted itself out. Keep faith and keep your BS in check, this will help with the best of outcomes.