Better Control - Eyes Worse?

[Colin of Kent]

In the last three months, I've managed to tighten up my control significantly. To give you some context, my overall average BG hasn't shifted, but the standard deviation was 3.7 in the 12 weeks to 3rd March, and is now 2.6 over the 12 weeks to last Sunday. The graphs below show it better.

Better control, that's what we're all after, right? Well, it turns out it's not quite that simple...

I went to have my retinal photography today, and it was found that there's been a lot of cholesterol leakage - more so than in the past. The lovely woman who did it said that, in her experience, when patients tighten up their control, their eyes often get worse before they get better.

Does anyone else have experience or knowledge of this?

Also, I can't help wondering whether my ketogenic diet is having an effect. My cholesterol score has always been around 4, but it hasn't been tested since starting the diet.

 

[Mr_Pot]

Cholesterol leakage?? As your BG changes the amount of fluid in your eye changes slightly, affecting the lens shape which alters your eyesight. This is usually temporary until your brain adjusts, but it might take a few weeks after your BG has become stable at a new level.

 

[Dark Horse]

The retinal photographer may have been talking about exudates (lipids and protein that have leaked out of the retinal capillaries);- http://www.glycosmedia.com/educatio...tinopathy-features-of-diabetes-hard-exudates/

Rapid improvement in blood glucose control is thought to worsen retinopathy in the short term although it reduces the risk in the long-term:- http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm

 

[Colin of Kent]

Exudates. That's the one! Thank you, Dark Horse.

 

[Colin of Kent]

The retinal photographer may have been talking about exudates (lipids and protein that have leaked out of the retinal capillaries);- http://www.glycosmedia.com/educatio...tinopathy-features-of-diabetes-hard-exudates/

Rapid improvement in blood glucose control is thought to worsen retinopathy in the short term although it reduces the risk in the long-term:- http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm

Many thanks for these links, especially the second one. It seems that may be what's happening in my case.

I had a lovely, experienced woman doing my photos, and as she was talking about cholesterol, I couldn't bring myself to say that I was now following a ketogenic diet...

 

[nikki.d]

In the last three months, I've managed to tighten up my control significantly. To give you some context, my overall average BG hasn't shifted, but the standard deviation was 3.7 in the 12 weeks to 3rd March, and is now 2.6 over the 12 weeks to last Sunday. The graphs below show it better.

View attachment 27062

View attachment 27063

Better control, that's what we're all after, right? Well, it turns out it's not quite that simple...

I went to have my retinal photography today, and it was found that there's been a lot of cholesterol leakage - more so than in the past. The lovely woman who did it said that, in her experience, when patients tighten up their control, their eyes often get worse before they get better.

Does anyone else have experience or knowledge of this?

Also, I can't help won dering whether my ketogenic diet is having an effect. My cholesterol score has always been around 4, but it hasn't been tested since starting the diet.

In the last three months, I've managed to tighten up my control significantly. To give you some context, my overall average BG hasn't shifted, but the standard deviation was 3.7 in the 12 weeks to 3rd March, and is now 2.6 over the 12 weeks to last Sunday. The graphs below show it better.

View attachment 27062

View attachment 27063

Better control, that's what we're all after, right? Well, it turns out it's not quite that simple...

I went to have my retinal photography today, and it was found that there's been a lot of cholesterol leakage - more so than in the past. The lovely woman who did it said that, in her experience, when patients tighten up their control, their eyes often get worse before they get better.

Does anyone else have experience or knowledge of this?

Also, I can't help wondering whether my ketogenic diet is having an effect. My cholesterol score has always been around 4, but it hasn't been tested since starting the diet.

]

I had the same thing happen to me two years ago. I was diagnosed with retinopathy and had laser treatment. six months after being diagnosed I had significantly improved my hba1c and almost overnight my sight suddenly deteriorated. I was told this can happen when glucose control happens quickly and that it was preferable in the long term.

However, my experience has not been a good one. i was diagnosed with diabetic macular oedema. This is not to do with your 'brain adjusting" It is exudate leaking from damaged blood vessels in the eyes, which blurs the vision meaning I struggle to read and see faces clearly. My eyes have not yet recovered. I have now been having regular injections into both eyes. I can no longer legally drive. Struggle to work and now have special magnification equipment that allows me to stay in work. Thankfully I have a very good employer.

I think I should have been told of the possibility that this could happen with quick control. I also think that this chance of this happening is worse because you don't get one to one treatment from someone that knows and understands all aspect of your individual diabetic needs.

I hope you get quick treatment if needed and your eyes don't get any worse.

 

[Colin of Kent]

]

I had the same thing happen to me two years ago. I was diagnosed with retinopathy and had laser treatment. six months after being diagnosed I had significantly improved my hba1c and almost overnight my sight suddenly deteriorated. I was told this can happen when glucose control happens quickly and that it was preferable in the long term.

However, my experience has not been a good one. i was diagnosed with diabetic macular oedema. This is not to do with your 'brain adjusting" It is exudate leaking from damaged blood vessels in the eyes, which blurs the vision meaning I struggle to read and see faces clearly. My eyes have not yet recovered. I have now been having regular injections into both eyes. I can no longer legally drive. Struggle to work and now have special magnification equipment that allows me to stay in work. Thankfully I have a very good employer.

I think I should have been told of the possibility that this could happen with quick control. I also think that this chance of this happening is worse because you don't get one to one treatment from someone that knows and understands all aspect of your individual diabetic needs.

I hope you get quick treatment if needed and your eyes don't get any worse.

Thanks, that's interesting. I've been thinking this over, and I'm starting to get quite concerned now. I need to drive for work, so I do need to be careful.

 

[Colin of Kent]

Okay, I confess... I'm in panic mode now. Help!

 

[Mal37]

Cholesterol leakage?? As your BG changes the amount of fluid in your eye changes slightly, affecting the lens shape which alters your eyesight. This is usually temporary until your brain adjusts, but it might take a few weeks after your BG has become stable at a new level.

Fascinating Mr Pot. I have had glaucoma for a number of years and was told that my eyes were 'rugby ball' shaped rather than Football shaped. Then, a week before I discovered that I had Type 2, my eyesight suddenly went perfectly clear for a few days, rather than how it usually is (having to wear glasses to read or computer work) Do you think this is strange? It was my only 'symptom' other that very occasionally having slight tingling in the tips of my fingers.

 

[Birdwoman]

Okay, I confess... I'm in panic mode now. Help!

Just remember that everyone is different!!! What happens to one is not always the norm!! There seems to be other people on here that have recovered, so focus on the good!!! Getting in a flap will not help at all, it can only make it worse!!!

Good luck

 

[Rachox]

Hi Colin, I had a similar experience last month, a result of background retinopathy I was diagnosed last May and had my first scan very quickly, all was clear. I bought my sugars under control very quickly, then got a different result this year. I posted here on the Forum about it and got some very reassuring replies. Here’s my thread:
https://www.diabetes.co.uk/forum/threads/worried-by-my-retinal-screening-result.148002/

 

[Dark Horse]

Okay, I confess... I'm in panic mode now. Help!

Have you actually had your results yet? Regarding just the exudates (as other features may change the grade), the following results are possible:-

1. The amount and location of the exudates does not meet the criteria for maculopathy so the results letter says 'background retinopathy' with a re-screen planned for next year
2. The amount and location of the exudates meets the criteria for maculopathy but they are not enough to cause immediate concern so the results letter says 'maculopathy' with an earlier re-screen planned in around 3 months
3. The amount and location of the exudates meets the criteria for maculopathy and there is some concern that eyesight is being affected (or is likely to be affected before the next annual screening is due) so the letter says 'maculopathy' with a referral to ophthalmology for further tests

A lot of people get exudates but with continued good diabetic control, they clear up. Other people will need treatment.

It is impossible to say whether your exudates have been caused by improved control - the process may already have been under way. The following article gives advice about reducing retinopathy progression. Notice that the warning about improved control leading to retinopathy progression talks about a drop in HbA1c of 33 mmol/mol.
http://www.diabeticretinopathy.org.uk/back_diabetic_retinopathy.html

 

[Mr_Pot]

Fascinating Mr Pot. I have had glaucoma for a number of years and was told that my eyes were 'rugby ball' shaped rather than Football shaped. Then, a week before I discovered that I had Type 2, my eyesight suddenly went perfectly clear for a few days, rather than how it usually is (having to wear glasses to read or computer work) Do you think this is strange? It was my only 'symptom' other that very occasionally having slight tingling in the tips of my fingers.

I agree it was strange but I can't really offer an explanation. When I said that your eyesight could change it is not always for the worse, it could get better at distance and worse close up for example. It is the fact that it was for such a short time that is puzzling.

 

[Colin of Kent]

Have you actually had your results yet? Regarding just the exudates (as other features may change the grade), the following results are possible:-

1. The amount and location of the exudates does not meet the criteria for maculopathy so the results letter says 'background retinopathy' with a re-screen planned for next year
2. The amount and location of the exudates meets the criteria for maculopathy but they are not enough to cause immediate concern so the results letter says 'maculopathy' with an earlier re-screen planned in around 3 months
3. The amount and location of the exudates meets the criteria for maculopathy and there is some concern that eyesight is being affected (or is likely to be affected before the next annual screening is due) so the letter says 'maculopathy' with a referral to ophthalmology for further tests

A lot of people get exudates but with continued good diabetic control, they clear up. Other people will need treatment.

It is impossible to say whether your exudates have been caused by improved control - the process may already have been under way. The following article gives advice about reducing retinopathy progression. Notice that the warning about improved control leading to retinopathy progression talks about a drop in HbA1c of 33 mmol/mol.
http://www.diabeticretinopathy.org.uk/back_diabetic_retinopathy.html

No, I haven't had the results yet. I've been on three-monthly reviews (i.e. No 2 on your scale) for the last two years or more. It's always been 'background changes', with a referral once to an eye consultant, who discharged me after the first appointment. I've always been concerned about my eyes, as I've often had 'background changes'.

The quoted 33 mmol/mol drop is interesting. My last HbA1c was 57, which was just before I swapped to keto, but it was also the best it had ever been. A decrease of 33 from 57 would be 24, and I'm pretty sure I'm nowhere near that low!

 

[Dark Horse]

No, I haven't had the results yet. I've been on three-monthly reviews (i.e. No 2 on your scale) for the last two years or more. It's always been 'background changes', with a referral once to an eye consultant, who discharged me after the first appointment. I've always been concerned about my eyes, as I've often had 'background changes'.

The quoted 33 mmol/mol drop is interesting. My last HbA1c was 57, which was just before I swapped to keto, but it was also the best it had ever been. A decrease of 33 from 57 would be 24, and I'm pretty sure I'm nowhere near that low!

If you were on 3-monthly reviews, it's possible that you already had exudates which haven't actually changed much - the photographer often doesn't have access to previous images so wouldn't realise that. If there has been an increase in exudates since last time, you may get referred into ophthalmology for an OCT scan to see if there are any changes that need treating.

If you are worried about the effect of your ketogenic diet, it might be worth getting both your cholesterol and your blood pressure levels checked as higher levels are thought to increase the risk of maculopathy.

 

[Colin of Kent]

If you were on 3-monthly reviews, it's possible that you already had exudates which haven't actually changed much - the photographer often doesn't have access to previous images so wouldn't realise that. If there has been an increase in exudates since last time, you may get referred into ophthalmology for an OCT scan to see if there are any changes that need treating.

If you are worried about the effect of your ketogenic diet, it might be worth getting both your cholesterol and your blood pressure levels checked as higher levels are thought to increase the risk of maculopathy.

She's seen me pretty regularly, so knows my eyes quite well, actually! She did compare them to the last images, and showed me too. The situation now is worse than most of the previous ones, I would say. I'm expecting to be referred, yeah.

Thanks for the tip about blood tests and BP, I will definitely consider that.