Low HbA1c and background retinopathy

[drahawkins_1973]

I have been diagnosed type1 for 5 years. I have good control and my HbA1c has always been 44 or lower (36 in December). I’m not overweight or have high blood pressure but after my recent eye screening test I’ve received a letter which tells my me I have background retinopathy. I’m surprised given I have good control and relatively newly diagnosed. Now I’m really worried! There was no more info in the letter apart from to say I don’t currently need treatment. Anyone else had anything similar.
I think I’m after some reassurance or advice please. I read that you should tighten sugar control but don’t think I can do much better. I will make an appointment with dr but wanted some thoughts first.
Thanks

 

[Robkww]

I had exactly the same feedback from my screening in December 2017 having had no sign of retinopathy in my first screening in 2016. Like yourself my HbA1C indicates good control at 34. When I went for my contact lense/eye test in March 2018 my optician took a number of retina scans and could find no sign of retinopathy - I'm not concerned.

 

[drahawkins_1973]

Thanks for the quick reply and assurance Robkww. I’m due an optician eye test next month so I’ll see what they say too.

 

[NewTD2]

I was diagnosed with background retinopathy after having a very high HBA1c of 85.

It can be reversed by having tight control and 'for now' avoid foods high in cholesterol and saturated fats such as red meat, cheese, prawns, full fat creams and yogurts which are high in saturates, oils etc.

Use only healthy, low saturated fats and cooking oils like cold pressed rapeseed oil for cooking, extra virgin oilve oil for salads, and eat avocados, salmon, walnuts, pecan nuts, brazil nuts, eggs, cheese with zero saturated fats at least until your background retinopathy disappears.

When the the HBA1c drops, the progression of background retinopathy will also slope downwards.

 

[Guzzler]

I had the same result and the same letter. I had a HbA1c of 98 on diagnosis but no problems with my sight as a result. Apparently, the eyes react really well to improved bg management. I must say, I did not adjust my saturated fat intake at all to lower cholesterol, in fact, I went LCHF and raised the amount of sat fats I eat. I have not seen evidence of lowered cholesterol levels being beneficial for the eyesight but maybe I havn't been looking in the right place (You see what I did there? ).

 

[Alison54321]

Retinopathy is caused by oxidative stress. So look at your diet, as well as keeping your blood sugars as controlled as you can. Eating foods high in anti-oxidants will help, so fruit and veg basically, as much as you can. Exercise also has an anti-oxideant effect, though I don't know as much about how that works, the science is more complicated, and I don't like complicated.

There is no way to avoid some too high blood sugars, no matter how well controlled you are, so compensate for that with a high anti-oxidant diet. That's my advice.

 

[catapillar]

I was diagnosed with background retinopathy after having a very high HBA1c of 85.

It can be reversed by having tight control and 'for now' avoid foods high in cholesterol and saturated fats such as red meat, cheese, prawns, full fat creams and yogurts which are high in saturates, oils etc.

Use only healthy, low saturated fats and cooking oils like cold pressed rapeseed oil for cooking, extra virgin oilve oil for salads, and eat avocados, salmon, walnuts, pecan nuts, brazil nuts, eggs, cheese with zero saturated fats at least until your background retinopathy disappears.

When the the HBA1c drops, the progression of background retinopathy will also slope downwards.

I don't follow how this is relevant to the OP who quite clearly says:

I have good control and my HbA1c has always been 44 or lower (36 in December).

I'm also not aware of any recommendation to avoid saturated fats with retinopathy. Where does this come from?

@drahawkins_1973 background retinopathy that doesn't require treatment can be put down to a screening error - the screening might be picking up retinopathy that isn't actually there - and it miraculously disappears next time. @Dark Horse explains this well. Fingers crossed when you go to see your optometrist they will be able to confirm there's nothing there to worry about.

 

[NewTD2]

My Endo gave me a leaflet from the NHS to avoid saturated fats for patients with background retinopathy

 

[drahawkins_1973]

Thanks @catapillar.
I know it’s no guarantee but I was interested to know if there was evidence of some variability in diagnosis.

 

[Alison54321]

My Endo gave me a leaflet from the NHS to avoid saturated fats for patients with background retinopathy

Interestingly, there is a connection between lipid levels and diabetic retinopathy, according to this. I didn't read it all..........just the first couple of paragraphs. It was too complicated to go any further.

https://www.tandfonline.com/doi/pdf/10.2217/clp.12.68

I'm going to go and read an ordinary book now, about nothing much.

 

[Dark Horse]

It's possible that you may have developed background retinopathy - some unlucky people do develop it despite good control. In that case all you can do is continue maintaining good control of diabetes and BP to reduce the risk of further progression, avoid smoking, and make sure you attend all eye screening appointments so that if any sight-threatening retinopathy does develop it can be treated at an early stage. However, with an HbA1c of 44 mmol/mol it seems very unlikely that you would develop background retinopathy within 5 years of diagnosis. It might be due to an error. For example, a harmless pigment spot can look like a microaneurysm if the camera flash is a little bit high. If you do go and see your GP, you can ask if the background retinopathy was reported in both eyes - it's less likely to be an error if both eyes were found to have retinopathy.

 

[drahawkins_1973]

Thanks Dark Horse. I’ll ask at the GPS.

 

[Fairygodmother]

The first time I was told background retinopathy was observed on a retinol photo, about thirty odd years ago, I thought my sight was doomed. The next annual photo was clear but since then background retinopathy’s been spotted two more times and then vanished again. One of the retinal imagist explained that a small a very small non-problematic spot in capillaries will be called background retinopathy and the confusion errs ‘on the safe side’. The main thing is not to get upset at this stage as the likelihood, with your good control, is that it’s not going to develop into full blown retinopathy.
Your HbA1C is excellent. Do you monitor highs and lows as well? The overall HbA1C is an average but if you can afford a Libre it’ll show you what your 24 hour bs profiles are doing.

 

[drahawkins_1973]

Thanks @Fairygodmother. Its a very vague letter they sent too which didn't help. I guess as you say they are trying to be better safe than sorry but it does maybe cause some unnecessary worrying. Hopefully I'll get the all clear next time.

I've been using a Libre for over 2 years now and find it really does help my control, in fact I don't know where I'd be without it!

 

[DCUKMod]

If it's any consolation @drahawkins_1973 - I had the left field letter yesterday. My HbA1cs have been like this:

October 13: 73 or 8.8%
February 14: 37 or 5.5%
May 14: 34 or 5.3%
August 14: 32 or 5.1%
November 14: 33 or 5.1%
May 15: 31 or 5.0%
October 15: 33 or 5.1%
September 16: 31 or 5.0%
November 17: 33 or 5.1%
March 18: - 30 or 4.9%.

Aside from diagnosis, all seems pretty stable to me, and when I have used Libres, they don't evidence any disproportionate spikes.

I hope you've managed decide on your way forward. I'm having my routine sight test on Saturday anyway, so will see what, if anything that throws up.

Oh well. It's always good to have something to bw grumpy about!

 

[drahawkins_1973]

Hi @DCUKMod
I decided in the end that I would try not worry about it as I don't feel like there's a lot I can do to change it. Like you I thought I would follow up with my optician at my next eye test pretty soon. I've been going there for a while so it would be good to actually speak to someone about it. My recent screening test was by a new outsourced group so wondered if their criteria was different and they didn't have previous records to compare? That's prob a bit hopeful but its what I tell myself to not panic
Fingers crossed for you for Saturday!

 

[DCUKMod]

Hi @DCUKMod
I decided in the end that I would try not worry about it as I don't feel like there's a lot I can do to change it. Like you I thought I would follow up with my optician at my next eye test pretty soon. I've been going there for a while so it would be good to actually speak to someone about it. My recent screening test was by a new outsourced group so wondered if their criteria was different and they didn't have previous records to compare? That's prob a bit hopeful but its what I tell myself to not panic
Fingers crossed for you for Saturday!

Well, my last test was certainly the quickest I've ever had done. They usually take a few images of each eye, but this time only the one.

I'm considerably less hacked off about it today than I was yesterday, and now I have a bit of a plan, I'll just play that out. My friend is married to an opthalmic surgeon specialising in diabetic eye disease, so I know where I can go for a stear, if necessary.

Thanks for the best wishes, and the same to you. If we're doing our best to look after ourselves, we have to accept what will be, will be, to an extent.

Thanks for posting your thread, because I think it's good to point out that not all things that appear to go wrong are necessarily related to control.

Bearing in mind I have been off the diabetes register for quite some time, I'll be fascinated to see my GP's reaction.

 

[wiserkurtious]

I have been diagnosed type1 for 5 years. I have good control and my HbA1c has always been 44 or lower (36 in December). I’m not overweight or have high blood pressure but after my recent eye screening test I’ve received a letter which tells my me I have background retinopathy. I’m surprised given I have good control and relatively newly diagnosed. Now I’m really worried! There was no more info in the letter apart from to say I don’t currently need treatment. Anyone else had anything similar.
I think I’m after some reassurance or advice please. I read that you should tighten sugar control but don’t think I can do much better. I will make an appointment with dr but wanted some thoughts first.
Thanks

I had this previous to my last screening but I'm all clear after my last screening,wouldn't worry to much about tbh your doing your best by the looks of your hba1c

 

[EllieM]

I've had on again off again background retinopathy for decades. I remember when I was 30 the diabetic eye specialist told me I'd probably need to start laser treatment when I was 40. I'm 56 now and any retinopathy still hasn't needed any treatment. Try not ot panic, specially since after 5 years with excellent bg control I'd strongly suspect a false positive. (Just curious, did they take photos and look at them afterwards, or did an ophthalmologist take the photos?)

 

[DCUKMod]

I've had on again off again background retinopathy for decades. I remember when I was 30 the diabetic eye specialist told me I'd probably need to start laser treatment when I was 40. I'm 56 now and any retinopathy still hasn't needed any treatment. Try not ot panic, specially since after 5 years with excellent bg control I'd strongly suspect a false positive. (Just curious, did they take photos and look at them afterwards, or did an ophthalmologist take the photos?)

Mine were by the screening service. It was the quickest ever, and only two images per eye, where I've usually had more.

I asked someone else who had an unexpected letter a few months ago what they had done. They rang the number on their letter and had their images reviewed again, resulting in his outcome changing.

I have a call to make tomorrow. If little else, I might get some further detail.

Have you tried that @drahawkins_1973 ?