Possible maculopathy..?!

[Lauren1989]

Hi There,

This is my first post here (be gentle ) but I’ve read a few threads about maculopathy because I’m getting myself so worked up, Google is making me worse (I know, I know, step away from Google!!)

I had my annual eye screening this week so I’m yet to receive the official letter with results, however I always ask when I’m there if they can see/tell me anything (I suffer with anxiety quite badly and will overthink/stress). Last year I had slight background changes but nothing to worry about. Went back this week and she thinks it’s showing maculopathy. Last year was R1M0, this year she thinks it will be R1M1 and I’m absolutely petrified of what this means, I’m convincing myself I’m going to go blind. I have been told by the lady who did the eye screening and my GP that with better levels this could disappear, but then I’ve not seen much info on that online so I go back to thinking I’ll go blind.

I had my normal eye test at the opticians last week and my prescription is very minimal and has barely changed in the last 6 years, to the point I didn’t need new glasses as she said I wouldn’t notice the difference in the prescription. She told me my eyesight was excellent, on their photo they took of my eye she said she could see very minimal background changes but nothing to worry about, so I assumed this would be the same as my eye screening from the year before.

I suffer so badly with anxiety and overthinking and get myself into such a state which I just hate.

I had a while of burying my head (stupid I know) and not being in the best control of my levels, I’m now taking meds properly and my last blood tests showed my levels had come down but still needed to come down a little more which I’m working on.

I guess I don’t really know what I’m asking…maybe for some reassurance? Some explanation of what this could mean? Some success stories? Anything really

I know I need to wait for the letter to see what’s happening but I can’t help but overthink and worry. I’m 34 and don’t want to go blind…not any time soon anyway

Apologies for my waffling and thanks so much in advance for any replies! X

 

[Lauren1989]

When I say she said my eyesight is excellent and prescription hasn’t changed, i mean it’s a very very small prescription that I wear for driving/watching tv etc I don’t wear glasses all the time

 

[AndBreathe]

Hi There,

This is my first post here (be gentle ) but I’ve read a few threads about maculopathy because I’m getting myself so worked up, Google is making me worse (I know, I know, step away from Google!!)

I had my annual eye screening this week so I’m yet to receive the official letter with results, however I always ask when I’m there if they can see/tell me anything (I suffer with anxiety quite badly and will overthink/stress). Last year I had slight background changes but nothing to worry about. Went back this week and she thinks it’s showing maculopathy. Last year was R1M0, this year she thinks it will be R1M1 and I’m absolutely petrified of what this means, I’m convincing myself I’m going to go blind. I have been told by the lady who did the eye screening and my GP that with better levels this could disappear, but then I’ve not seen much info on that online so I go back to thinking I’ll go blind.

I had my normal eye test at the opticians last week and my prescription is very minimal and has barely changed in the last 6 years, to the point I didn’t need new glasses as she said I wouldn’t notice the difference in the prescription. She told me my eyesight was excellent, on their photo they took of my eye she said she could see very minimal background changes but nothing to worry about, so I assumed this would be the same as my eye screening from the year before.

I suffer so badly with anxiety and overthinking and get myself into such a state which I just hate.

I had a while of burying my head (stupid I know) and not being in the best control of my levels, I’m now taking meds properly and my last blood tests showed my levels had come down but still needed to come down a little more which I’m working on.

I guess I don’t really know what I’m asking…maybe for some reassurance? Some explanation of what this could mean? Some success stories? Anything really

I know I need to wait for the letter to see what’s happening but I can’t help but overthink and worry. I’m 34 and don’t want to go blind…not any time soon anyway

Apologies for my waffling and thanks so much in advance for any replies! X

@Lauren1989 - anybody here telling you not to worry is probably wasting their breath, but on the upside, it is natural to feel concern if you have a disappointing result.

Whilst not maculopathy I did have one R1M0, R0M0 result which left me with a real sick feeling in my tummy.

i was fortunate to have a friend married to a Opthalmolgy Consultant, with specialist interest in diabetes. Whilst he couldn’t look at my results, his advice to me was to keep my blood glucose and blood pressure at decent levels and hopefully it would resolve. By next screening it was gone.

In terms of Interpreting your own results, you might find this helpful: https://www.yorkhospitals.nhs.uk/ou... – low risk R1M1,field photography and an OCT.

Whatever you do; don’t panic. It helps nothing and just interrupts your sleep and all sorts. Take it steady, and wait for those results to come through.

If at that time you still feel very anxious your GP or optician might be able to give you further context.

 

[Lauren1989]

Thank you so much for your reply.

I’m really hoping that with some better control that I’ll at least be back to R1M0. I know my blood pressure is fine so it’s the blood glucose I’ll work on. Although the lady who did the eye screening told me not to do anything drastic with diet or anything so I don’t want to do that and affect things further!

 

[LittleGreyCat]

I have always assumed that the diabetic eye screening was for retinopathy.
My screening is clear, so far, thankfully.

However I do have some macular degeneration, identified at my annual visit to the optician.
This is the dry type, so not immediately catastrophic but is starting to impact my vision a little.
I have always (since 8) worn glasses, and until the last few years I have always had very good corrected vision.
I now don't qualify for a C1 driving licence but otherwise I am fine.

I have checked, and
Diabetic eye screening results
does include maculopathy.
Now wondering if maculopathy is the same as macular degeneration and if so why mine was not detected by the eye screening.
Every day is a school day.

 

[MrsA2]

Hi @Lauren1989
I see the most wonderful ophthalmologist regularly as I have non-diabetic eye problems and have had for a long time before diabetes reared its head.
When I asked him about risk and deterioration (which I'm terrified will happen in my 1 good eye) he really clearly said that if I keep my sugars in check it would be very very rare to develop anything because of diabetes.
And that's what I keep as my motivation to stay low carb, I have to keep my good eye good as my bad eye is getting worse (I have a past injury that didn't heal well, nothing to do with diabetes.)
So rather than worrying about things you can't control, try turning it round to being a positive motivating factor?

What may happen as you lower your sugars is that your eyes may get blurry for a while, even several weeks. There's a scientific reason for it as the liquids and pressures change, but I prefer to think of it as my tears getting thicker as the sugar floods into them then out of my body and away for good. Good riddance to sugar, I say
However it can be alarming so that's probably why she said don't change drastically. However I know that maybe drastic change is needed. Only you can decide which, fast or slow sugar reduction, is best for you. Maybe now you know about eyes it won't be so worrying, but the key is to cut carbs down or out... and for life.
Good luck. Plenty of support on here

 

[Lauren1989]

Thank you so much @MrsA2

I’m really going to try and focus on the not worrying and be positive about the change. I’ve been looking at better foods to cook, low carbs etc.

Myself and my partner love camping/adventures etc…so sometimes we’re not at home to cook things as easily. Do you (or does anybody) have any recommendations for things that may be better for me but okay to cook on a limited camp stove/bbq? And also lunches/snacks when we’re out walking/adventuring? Are there any such thing as any bars/crisp type things (that I can buy or make) that are okay for diabetics to eat?

 

[Antje77]

Do you (or does anybody) have any recommendations for things that may be better for me but okay to cook on a limited camp stove/bbq?

Bacon and eggs, a stirfry with veggies and whatever meat you like, a rich creamy soup or stew on the camp stove. On the bbq, all the meat, veggies and salad you like, just skip the bread and potatoes.

And also lunches/snacks when we’re out walking/adventuring? Are there any such thing as any bars/crisp type things (that I can buy or make) that are okay for diabetics to eat?

I don't like bars but I think @Rachox likes the carb killa bars. For crisp type things, pork scratchings are great, or you can make your own cheese crisps in the microwave or oven, very easy: just grate some hard cheese on a baking sheet in a thin layer and pop in the microwave for a couple of minutes (or a little longer in the oven), They should be crispy when cooled, if chewy, bake/microwave them a little longer.
Hard boiled eggs are also perfect for food on the road.
For a very filling and low carb treat, I love these, although I use a lot more nuts (all kinds of nuts) than the recipe says and experiment with different spices. I especially like powdered cloves and chilli powder in mine: https://www.dietdoctor.com/recipes/low-carb-chocolate-peanut-squares.

 

[Rachox]

Thanks for the tag @Antje77 . I love low sugar protein bar such as PHD Smart bars and Carb Killas, Lidl, Aldi and Holland and Barrett all have their own versions too.
Savoury snacks I too like pork scratchings and also Cheesies

 

[Lauren1989]

Thank you so much @Antje77 for some great ideas! Very much appreciated and feeling a little less overwhelmed!

@Rachox thank you so much! Are the Carb Killas bars the grenade bars? What are Cheesies please?

Also, does anybody know if the sugar free ***** bears and soft foam sweets are terrible for you? They’re from Aldi.

Thanks again to everyone for your replies.

 

[Rachox]

@Rachox thank you so much! Are the Carb Killas bars the grenade bars? What are Cheesies please?

Yes they are Grenade bars, widely available in supermarkets these days, when I first went low carb they were only sold in a few places.
Here is a link to the Cheesies website:

Cheesies | Crunchy Baked Cheese Snacks

Deliciously crunchy baked cheese snacks, Cheesies are high protein, have no (or low) carbs or sugar, are vegetarian and even gluten-free. It's cheese, but not as you know it. Versatile keto diet snacks, comes in 20g on the go bags or 60g resealable bags

www.cheesies.co.uk

I think you can get them in Holland and Barrett too.

 

[Lauren1989]

Ahh amazing! I thought it was the grenade bars so I popped to the shop to grab to see if they had any and got a couple to try

I’ll have a look at the cheesies too!

Thanks so much!

 

[Nicola M]

Hi There,

This is my first post here (be gentle ) but I’ve read a few threads about maculopathy because I’m getting myself so worked up, Google is making me worse (I know, I know, step away from Google!!)

I had my annual eye screening this week so I’m yet to receive the official letter with results, however I always ask when I’m there if they can see/tell me anything (I suffer with anxiety quite badly and will overthink/stress). Last year I had slight background changes but nothing to worry about. Went back this week and she thinks it’s showing maculopathy. Last year was R1M0, this year she thinks it will be R1M1 and I’m absolutely petrified of what this means, I’m convincing myself I’m going to go blind. I have been told by the lady who did the eye screening and my GP that with better levels this could disappear, but then I’ve not seen much info on that online so I go back to thinking I’ll go blind.

I had my normal eye test at the opticians last week and my prescription is very minimal and has barely changed in the last 6 years, to the point I didn’t need new glasses as she said I wouldn’t notice the difference in the prescription. She told me my eyesight was excellent, on their photo they took of my eye she said she could see very minimal background changes but nothing to worry about, so I assumed this would be the same as my eye screening from the year before.

I suffer so badly with anxiety and overthinking and get myself into such a state which I just hate.

I had a while of burying my head (stupid I know) and not being in the best control of my levels, I’m now taking meds properly and my last blood tests showed my levels had come down but still needed to come down a little more which I’m working on.

I guess I don’t really know what I’m asking…maybe for some reassurance? Some explanation of what this could mean? Some success stories? Anything really

I know I need to wait for the letter to see what’s happening but I can’t help but overthink and worry. I’m 34 and don’t want to go blind…not any time soon anyway

Apologies for my waffling and thanks so much in advance for any replies! X

I am 26 and was diagnosed with maculopathy in both eyes in June 2022. Mine was due to going from having very poor control to suddenly having very good control (going into hybrid closed loop). I wish I could say don’t worry but easier said than done but also worrying won’t change the outcome of if you do possibly have it or not.

My greatest piece of advice is if your control is poor try to tighten it up as much as you can and improve your HbA1c to more normal levels as much as possible. My levels aren’t always perfect but my HbA1c has consistently been 38-45 ish for the last 1.5 years now. If you do have maculopathy you’ll be screened more regularly (every 3 months) at a hospital clinic more than likely. The main thing they look for is how is your control if it’s good then you’ll likely be able to reverse the maculopathy. I always get asked at every appointment if I see floaters, I don’t which I take as a good sign that my eyes aren’t terrible.

If they do find maculopathy though do not expect a quick fix even if you do improve your control, at my last appointment in November I still had signs of maculopathy in my right eye, although my left had improved. So even with good control over the last 1.5 years it’s still present but not bad enough that I’d need treatment.

 

[andrewk75]

Thanks for the tag @Antje77 . I love low sugar protein bar such as PHD Smart bars and Carb Killas, Lidl, Aldi and Holland and Barrett all have their own versions too.
Savoury snacks I too like pork scratchings and also Cheesies

Aren't Carb Killa bars relatively high in carbs, although low in sugar? I used to enjoy Oaty Zero Sugar biscuits, but unfortunately they are quite high in carbs.

 

[Rachox]

Aren't Carb Killa bars relatively high in carbs, although low in sugar?

The total carb count appears high but in this case you subtract the carbs from polyols (sweeteners) which aren’t absorbed in most people. This gives net carbs which amount to around 3-6g per bar depending on the flavour.

 

[andrewk75]

The total carb count appears high but in this case you subtract the carbs from polyols (sweeteners) which aren’t absorbed in most people. This gives net carbs which amount to around 3-6g per bar depending on the flavour.

Thanks for clarifying, must admit this whole thing with carb counting is very confusing. I will keep an eye open for these.