Retinopathy & Maculopathy following fast reduction of HbA1c

[LooperCat]

Got the results of my retinopathy screening today only to find I have pre-proliferative retinopathy in one eye and maculopathy in both. Was just background last year... hard not to panic. I’m now aware that rapid improvement of HbA1c such as mine can cause this - but I was never told about it when I was given three months to drop it by 27 (2.5 % points) in order to “win” a Libre prescription. I had no idea this could be an issue until after I’d dropped it from 89 (10.1%) to 50 (7%) and read about it here. I’m now at 40 (5.8%). An online friend of mine has just had treatment for this, got an infection, and lost an eye as a result: as I say, hard not to panic.

The thought of treatment on my eyes terrifies me, can they knock you out? I’m on the autism spectrum and am intensely and overwhelmingly fearful of anyone going near my eyes.

Can anyone allay my fears and give me something positive?

 

[mike@work]

Got the results of my retinopathy screening today only to find I have pre-proliferative retinopathy in one eye and maculopathy in both. Was just background last year... hard not to panic. I’m now aware that rapid improvement of HbA1c such as mine can cause this - but I was never told about it when I was given three months to drop it by 27 (2.5 % points) in order to “win” a Libre prescription. I had no idea this could be an issue until after I’d dropped it from 89 (10.1%) to 50 (7%) and read about it here. I’m now at 40 (5.8%). An online friend of mine has just had treatment for this, got an infection, and lost an eye as a result: as I say, hard not to panic.

The though of treatment on my eyes terrifies me, can they knock you out? I’m on the autism spectrum and am intensely and overwhelmingly fearful of anyone going near my eyes.

Can anyone allay my fears and give me something positive?

Well it's unfortunately true, what you are saying above, but the good point is - it should stabilize quite fast as far as I know.
Really much turmeric does help, but you could get problems with lows from the spice. Even better, if you manage to blend it with a little of ginger. I know by experience, I have tested. My bloodsugarlevels did only so and so keep above3.5 mmol/l, so I had to stop.

 

[LooperCat]

Well it's unfortunately true, what you are saying above, but the good point is - it should stabilize quite fast as far as I know.
Really much turmeric does help, but you could get problems with lows from the spice. Even better, if you manage to blend it with a little of ginger. I know by experience, I have tested. My bloodsugarlevels did only so and so keep above3.5 mmol/l, so I had to stop.

I do use a fair bit of both in my cooking

 

[dancer]

It could be the case that your eyes will improve without any treatment, if your BGs remain good. I was referred to an eye specialist as my screening result showed maculopathy. The consultant gave me the all clear, saying that whatever the screening had shown had cleared up.

 

[Jaylee]

Hi @Mel dCP ,

Sorry to hear of your news..
It's well documented on here that I've had treatment for a macula oedema. Ironically diagnosed after I tidied my A1cs up..

There is nothing to worry about. (& I hate folk fiddling with my eyes.)
I've had no issues with infections from the procedure. I get a bottle of eye drops given (to put in twice daily for the folowing 3 days.) to cut the risk of infection as an "after care" from the procedure..


Have they said you need treatment, or are you just being monitored for now....?

 

[mike@work]

I do use a fair bit of both in my cooking

Good to see you understood even a word of what I was writing - I nearly didn't myself. Had to catch a train, so I was in a hurry, but I just had to throw you a lifeline...
Well I said turmeric, but I talked about amounts of something like 1 teaspoon+ / day (brimful), or even more somedays. Ate that for 3-4 months + some ginger and garlic. This started to reverse my beginning eye problems. Documented change i.e., not a tale! I've had 2 light laser treatments this far, but because of that, I'm thinking about starting my "turmeric-cure" again.
I think, by the way, I got my eye problems partly because of similar reasons, as you got yours...

"dancer" has also a point - if you keep your BSLs as good as I have understood they are, you maybe don't need a miracle cure to reverse the damage at all...

 

[Jaylee]

Good to see you understood even a word of what I was writing - I nearly didn't myself. Had to catch a train, so I was in a hurry, but I just had to throw you a lifeline...
Well I said turmeric, but I talked about amounts of something like 1 teaspoon+ / day (brimful), or even more somedays. Ate that for 3-4 months + some ginger and garlic. This started to reverse my beginning eye problems. Documented change i.e., not a tale! I've had 2 light laser treatments this far, but because of that, I'm thinking about starting my "turmeric-cure" again.
I think, by the way, I got my eye problems partly because of similar reasons, as you got yours...

"dancer" has also a point - if you keep your BSLs as good as I have understood they are, you maybe don't need a miracle cure to reverse the damage at all...

Thanks for clarifying your prevous post Mike@work. Seriously, there was I thinking the fact I didn't need the jabs in a long time was souly down to a reasonable A1c. But we use tumeric, ginger & garlic a fair bit too..!

My wife has a cook book that reckons it can contribute to cutting inflammation?

Oddly, we're having it tonight.

 

[Dark Horse]

Don't panic yet - screening is quite sensitive and it's not unusual for changes to be picked up at a level where no treatment is required, just 'watchful waiting'. If you've been referred to ophthalmology (rather than to the surveillance arm of the eye screening) you will need further tests. Depending on the results of these you might be discharged straight back to eye screening, you might be re-tested at intervals in the ophthalmology department or you might be offered treatment. Try not to worry about treatment before you know whether any is needed. If any treatment is offered, explain about the autism and talk over your fears with the ophthalmologist - they may be able to offer you additional help to cope with the procedure. Once again, try not to worry too much at this stage - just enough to make sure you attend all your eye appointments and carry on with keeping good control.

Although a rapid improvement in diabetic control is thought to 'worsen' retinopathy in the short-term, it is beneficial in the long-term and no-one really knows the 'correct' rate at which HbA1c should be lowered.

 

[LooperCat]

Don't panic yet - screening is quite sensitive and it's not unusual for changes to be picked up at a level where no treatment is required, just 'watchful waiting'. If you've been referred to ophthalmology (rather than to the surveillance arm of the eye screening) you will need further tests. Depending on the results of these you might be discharged straight back to eye screening, you might be re-tested at intervals in the ophthalmology department or you might be offered treatment. Try not to worry about treatment before you know whether any is needed. If any treatment is offered, explain about the autism and talk over your fears with the ophthalmologist - they may be able to offer you additional help to cope with the procedure. Once again, try not to worry too much at this stage - just enough to make sure you attend all your eye appointments and carry on with keeping good control.

Although a rapid improvement in diabetic control is thought to 'worsen' retinopathy in the short-term, it is beneficial in the long-term and no-one really knows the 'correct' rate at which HbA1c should be lowered.

Thank you

 

[Gaz-M]

I have had retinopathy for the best part of 10 year and it has stayed stable in that time, started on the pump in 2015 and was diagnosed with Maculopathy last year in the July and as of yet have not needed any treatment. I have put the diagnosis down to getting my BS under better control but by no means perfect, my HbA1c has always been between 52 and 42 over the past 14 year but this was due to hypo's galore before I started on the pump, I have screening every 6 month at our local drop in centre but I was at the eye infirmary for 6 years prior, fingers crossed you will not need treatment

 

[mike@work]

Thanks for clarifying your prevous post Mike@work. Seriously, there was I thinking the fact I didn't need the jabs in a long time was souly down to a reasonable A1c. But we use tumeric, ginger & garlic a fair bit too..!

My wife has a cook book that reckons it can contribute to cutting inflammation?

Oddly, we're having it tonight.

That's absolutely an omen
I'll try to remember to dig up some of the links, that are about turmerics effect on Advanced Glycemic Endproducts. It's not only an antiinflammatoric effect that is at work here - but this will be a job for tomorrow, bed is soon calling over here...

 

[Jaylee]

That's absolutely an omen
I'll try to remember to dig up some of the links, that are about turmerics effect on Advanced Glycemic Endproducts. It's not only an antiinflammatoric effect that is at work here - but this will be a job for tomorrow, bed is soon calling over here...

Well, technically the recipe was a sort of chicken broth, designed as a "family cold" easer.
Though my health is fine, it was really tasty. & relatively LC.

Just hoping my experience has brought a little peace of mind to @Mel dCP ?
Regarding the actual eye treatment; I found the HCPs calm, caring, & "tuned in" to the reservations of the patient. The assisting nurses seemed adept at belaying any nerves too? Old school compassion. (Though personally, I just wanted in, over & done with. & Out.)

 

[LooperCat]

Well, technically the recipe was a sort of chicken broth, designed as a "family cold" easer.
Though my health is fine, it was really tasty. & relatively LC.

Just hoping my experience has brought a little peace of mind to @Mel dCP ?
Regarding the actual eye treatment; I found the HCPs calm, caring, & "tuned in" to the reservations of the patient. The assisting nurses seemed adept at belaying any nerves too? Old school compassion. (Though personally, I just wanted in, over & done with. & Out.)

It has a little, thank you. Bearing in mind that when I had to have a camera down my throat when I had gallstones, it took six nurses to pin me down, I’m quite scared. Knock me out and do what you like!

 

[tim2000s]

Hi @Mel dCP - I was also diagnosed with maculopathy in my left eye at my most recent screening - there's a topic here: https://www.diabetes.co.uk/forum/threads/what-is-maculopathy.156708/ which tries to explain it a little.

I had a decent chat with the Optometrist who was doing the scan about treatment and management, and it's basically under review and if it gets worse, treatment. The best thing to do is stabilise glucose levels over the long term to manage the condition, then they'll apply treatment if it gets worse.

For what it's worth, maculopathy is basically retinopathy within close range of the macula.

 

[enzina]

Oh Mel, i'm sorry to hear that, you are working so hard and your glucose levels are awesome. You are such an inspiration for me!
I really hope you don't need treatment and the thing sorts itself out. Keeping my fingers crossed for you.

 

[PenguinMum]

@Mel dCP I would like to echo @enzina comments. You are a huge help and inspiration to us all whilst cheerfully dealing with many allergies. My gut feeling is that you work hard on your control and I am sure it will all work out well for you. Best wishes.

 

[mike@work]

Hello!

I promised a few links, that had some facts about turmerics (and above all, one of its components, curcumin) positive effects. I can probably find more links , if it looks to bee an interesting subject - just ping me in that case...

https://www.researchgate.net/public...in_streptozotoxcin-nicotinamide_diabetic_rats

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1868028/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1868028/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6113848/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6036289/

Can't say, I understand it all, but writings like these was the main reason why I decided to test turmeric. Somewhere there was also mentioned about garlics role to counteract retinopathy. The gist of it was, that garlic alone doesn't affect retinopathy considerably, but it supports and enhances the action of turmeric.
Rats are not people, but conclusions tested on at least one person

 

[eventhorizon]

@Mel dCP. I'm in the same boat. Recent screening showed up maculopathy in one eye and pre proliferation in the other. Such a horrible feeling when you read that letter. I had a angiogram last week to see exactly what's going on and maybe targeted laser treatment if required. Waiting for the results now......

 

[LooperCat]

Thank you all for your supportive, non-panicky and informative replies. I can’t pretend I’m not still bricking it and will be watching the letterbox like a hawk waiting for this appointment to come through... I’m seeing imaginary splotches in my vision that weren’t there before I opened the letter, my eyes feel sort of “sticky” - that cling film effect you get when sugars are high. Which they aren’t, I haven’t even hit double figures in weeks. I’m certain it’s psychosomatic, but I can’t seem to talk myself down. Gah! Hate my idiot brain sometimes...

 

[Koalajane]

Mel, I had an injection into my eye on Wednesday. This was my first one and I was very concerned. The practitioner was fantastic and put so many numbing drops into my eye that I never felt it at all. Her colleague offered to hold my hand while it was being done. I had no after effects and I am now not at all concerned about having the next one. If you have to have the injection please do not be concerned.