Background Retinopathy

[bbygh0ul]

Today I just got a letter with my eye screening results that basically say I have background retinopathy, this was only my second screening and my very first one from last year came back normal. I feel shocked and upset and I don’t know what to do. I’m worrying that I’ll lose my sight, did I develop this so quickly that it’ll worsen just as fast? I’ve only been diagnosed for about two years and now with this news I’m really scared..

 

[Greymouser]

Welcome to the forum. 🙂

I had exactly the same situation, first one clear then second one background retinopathy. The letter they send out is truly awful isn't it? I have since been told that even though my diabetes is well under control, the little bleeds can still happen, it is just bad luck. I was also told it will not have happened quickly, but probably over years, as it was unknown how long I had been diabetic, before diagnosis, as I had no symptoms, I guess.

However try not to worry too much, because whilst it stays in the background, you will be fine, no treatment will be needed. Have they said to come back in a year, or sooner?

 

[Bruce Stephens]

If you search the forum you'll see many of us have had background retinopathy for years, maybe decades. It can vary (mine worsened for one test so they asked me back after 6 months rather than the usual 1 year), but it went back to the usual 1 years immediately afterwards.
Good control of blood glucose and blood pressure can help.

 

[bbygh0ul]

Welcome to the forum. 🙂

I had exactly the same situation, first one clear then second one background retinopathy. The letter they send out is truly awful isn't it? I have since been told that even though my diabetes is well under control, the little bleeds can still happen, it is just bad luck. I was also told it will not have happened quickly, but probably over years, as it was unknown how long I had been diabetic, before diagnosis, as I had no symptoms, I guess.

However try not to worry too much, because whilst it stays in the background, you will be fine, no treatment will be needed. Have they said to come back in a year, or sooner?

Thank you.

Yeah the letter isn’t great, it was just quite a shock because during my screening I was told everything looked good and not to worry so then receiving opposite news was kind of frightening.

And no they didn’t ask to see me any sooner, not until another 12 months.
I’m just unsure of what to do at this point and how to make it not get any worse..

 

[bbygh0ul]

If you search the forum you'll see many of us have had background retinopathy for years, maybe decades. It can vary (mine worsened for one test so they asked me back after 6 months rather than the usual 1 year), but it went back to the usual 1 years immediately afterwards.
Good control of blood glucose and blood pressure can help.

I plan on starting to monitor my blood sugar levels from now, I never had because my doctors never told me to do so and I guess I just assumed all was fine. I’ll a have look into getting the monitoring kit though. I’m not too sure how I’d monitor my blood pressure and as far as I know that has been normal when it’s been checked at the doctors.

 

[Bruce Stephens]

I plan on starting to monitor my blood sugar levels from now, I never had because my doctors never told me to do so and I guess I just assumed all was fine.

I didn't mean to imply you should change what you're doing. If your doctors are fine with what you're doing and your HbA1c is around 48 or less, that's probably fine. (The benefits of lower than 48 seem not to be that big.) Similarly, if your blood pressure is fine when it's checked by the GP, you probably needn't worry about it.

If you want to do blood testing, there seems to be evidence of some benefit (to HbA1c, presumably because people are seeing what particular foods do for them), but don't feel guilty if it becomes too annoying (or expensive); the evidence for long term testing seems not to show benefit. (Unless and until you're using medications where self testing is required.)

I was really just suggesting that managing our diabetes (and health generally) is probably all we can do, and there's every chance the background retinopathy will improve. (And if it doesn't, it may just be bad luck, and not caused by anything you're doing.)

 

[Greymouser]

If they are leaving it for just the routine 12 months, then you have no worries, it's still all routine. Nothing to do, just relax and keep things under control. 🙂

 

[bbygh0ul]

Thank you both for the advice, I appreciate it.

Does anyone else have any advice or words of reassurance that might be helpful with my situation? I’m worried sick at the moment and can’t get it off my mind since I found out this morning and just keep thinking “what if I go blind”, this news really has terrified me

 

[Bruce Stephens]

Does anyone else have any advice or words of reassurance that might be helpful with my situation? I’m worried sick at the moment and can’t get it off my mind since I found out this morning and just keep thinking “what if I go blind”, this news really has terrified me

Try not to panic. If they thought it was worthwhile they'd have invited you for another scan in 3 or 6 months, and they didn't. The modern screening detects levels of background retinopathy that were undetectable when I was first diagnosed. I'm sure whoever you see for your diabetes will say if they think you need to change what you're doing.

 

[bbygh0ul]

Try not to panic. If they thought it was worthwhile they'd have invited you for another scan in 3 or 6 months, and they didn't. The modern screening detects levels of background retinopathy that were undetectable when I was first diagnosed. I'm sure whoever you see for your diabetes will say if they think you need to change what you're doing.

I think what’s worrying/scaring me is the thought of when I go for another screening next year and if it’s possibly gotten worse.

I plan on calling my doctors on Monday to see if I can have a chat about my results and maybe find out exactly what’s going on and what they recommend I should be doing.

 

[trophywench]

If it's any help - mine was diagnosed in 1995 and I still have it. It's never needed any treatment nor have I ever needed to be seen faster than in another 12 months. I wore glasses before that cos I'm astigmatic and I still wear em - have need stronger ones about every 3 or 4 years all through my life as I got older. I've had cataracts in both eyes and Lord knows shedloads of different opthalmologists peer very closely into your eyeballs whilst you're having them sorted out and eventually, removed. Hence if there had ever been some disaster happening at the back of an eyeball perhaps it would have been spotted? But anyway after each one they got much clearer photos of my retinas once the lenses were replaced - NADA.

I'm not you and you're not me - I've always tried to keep my BG and BP in a reasonable range and that's the best any of us with diabetes can do, day to day, isn't it? There's no magic bullet and your GP won't - shouldn't - say that there is. If you want to check your own BP - you can easily buy a decent BP machine to use at home from any good pharmacy for about £20 or less. Omron is a decent make, so is Pro Logic. Most pharmacies will also check it for you if you ask.

Importantly - please try not to stress so much! Stress commonly increases our blood glucose AND our BP !

 

[bbygh0ul]

If it's any help - mine was diagnosed in 1995 and I still have it. It's never needed any treatment nor have I ever needed to be seen faster than in another 12 months. I wore glasses before that cos I'm astigmatic and I still wear em - have need stronger ones about every 3 or 4 years all through my life as I got older. I've had cataracts in both eyes and Lord knows shedloads of different opthalmologists peer very closely into your eyeballs whilst you're having them sorted out and eventually, removed. Hence if there had ever been some disaster happening at the back of an eyeball perhaps it would have been spotted? But anyway after each one they got much clearer photos of my retinas once the lenses were replaced - NADA.

I'm not you and you're not me - I've always tried to keep my BG and BP in a reasonable range and that's the best any of us with diabetes can do, day to day, isn't it? There's no magic bullet and your GP won't - shouldn't - say that there is. If you want to check your own BP - you can easily buy a decent BP machine to use at home from any good pharmacy for about £20 or less. Omron is a decent make, so is Pro Logic. Most pharmacies will also check it for you if you ask.

Importantly - please try not to stress so much! Stress commonly increases our blood glucose AND our BP !

Thank you for your reply.

I’m definitely going to be looking into keeping a watch on my blood sugar and my blood pressure from now which to be honest I had never really done since finding out I have diabetes, this was a bit of a wake up call I guess.

I don’t feel as stressed and worried today, just hoping my doctors can give me a bit more reassurance on Monday as well.

 

[novonord]

Evidence is that BG monitoring doesn't make much difference in Type 2 but may be worthwhile in the short-term for you to see whether you are experiencing excessive excursions of your sugars after eating, otherwise advice given here is good, keep your Hba1c no higher than 53-55 if possible, get your eyes checked every 6 months, by using the free service for diabetics from opticians between NHS screenings, eat small amounts of carbs and often try to restrict your overall intake to 100g a day or less, get yourself on a statin if not already on it, and monitor your blood pressure and if elevated get it down, this may require more than one antihypertensive treatment,
I was given an R1 10 years ago, but have been clear since by blood pressure control, diet and reasonable Hba1c in the range 48-56 so it can be done! problem now is the developing cataracts- another diabetes assoc problem...

 

[KARNAK]

Hello @bbygh0ul please don`t be scared quite a few of us have had background Retinopathy sometime on our Diabetes journey. Its good to keep your BSL under control as is your BP, most Consultants will advise to get an Omron BP Monitor although I use a Lloyds Pharmacy one which I have had for nearly ten years and it gets checked every 6 months for accuracy at the GP`s. Please be assured we understand your concern and you would be very unlucky indeed if it went any further, please take care we are here for you.

 

[bbygh0ul]

Hello @bbygh0ul please don`t be scared quite a few of us have had background Retinopathy sometime on our Diabetes journey. Its good to keep your BSL under control as is your BP, most Consultants will advise to get an Omron BP Monitor although I use a Lloyds Pharmacy one which I have had for nearly ten years and it gets checked every 6 months for accuracy at the GP`s. Please be assured we understand your concern and you would be very unlucky indeed if it went any further, please take care we are here for you.

Hi, thanks for your reply.

I plan on keeping a check of my blood sugar levels from now on and being more careful with what I’m eating. I’ll definitely be looking into getting a blood pressure monitor as well, does blood pressure make a big difference with this kind of thing?

 

[Greymouser]

High blood pressure can cause damage to the retina, but according to the specialist ophthalmologist, I saw recently, the damage to the retina is different, than that caused by high blood sugars. They can tell the difference, by seeing the type of damage. If the background retinopathy was caused by high BP. then you would have been told it was so. I would say the use of a blood glucose monitor is essential for all type 2's, at least initially, as it allows you to see which foods will spike you, which will not. We are all different and are affected in different ways. For instance I cannot touch pasta and rice any more, have to be very careful with bread, but chips do not really spike me! Go figure that one out? 🙂

I would also say you need to get your Hba1c down to normal levels, which is I believe below 42? It is easy to do, if you apply yourself, if I can do it in 6 months, so can anyone, because I am not the strongest person on the planet! I did however lose four and a half stone in weight in that time and radically changed my diet, but have now allowed myself on treat night a week, where I can relax the control some what!

The idea with the monitor, is to check before eating, then two hours after, see what foods your body can tolerate and which it cannot. Problem is that some foods can cause a spike later than two hours, so it is best to check again later at first, till you find your feet as it where. I doubt your GP will give you a monitor, unless you are very lucky, so many buy this one from Amazon, because it is one of the cheapest and seems decent. Certainly I still would not be without mine. 🙂
https://www.amazon.co.uk/Codefree-G...id=1574624104&sprefix=codefree,aps,141&sr=8-5

 

[Flower]

The following site has really good information on retinopathy and the factors we need to contol as well as possible to maintain good eye health. http://www.diabeticretinopathy.org.uk/back_diabetic_retinopathy.html -scroll down for the suggested targets. Don't get freaked out by the advice, a good percentage of people with diabetes will get background retinopathy just because they have diabetes and it doesn't mean anything will progress, however there's every reason to take it seriously.

Background retinopathy is micro changes to the tiny blood vessels in the eyes and as others have said background retinoathy can disappear or just stay stable for decades. The main thing is to attend the screening when called and the things we need to control are the same as for good diabetic control - a good HbA1c but if you need to lower your HbA1c do it slowly as a rapid drop in HbA1c is not advisable, good cholesterol level, in range blood pressure as the tiny fragile retina vessels are damaged by higher pressure, stop smoking if you do as that is linked to an increased incidence of retinopathy.

The letter is one of those things no one wants to receive but the microscopic changes have been picked up very early and there's every hope it will just revert to normal retina health at the next screening in 12 months, 🙂 Wishing you well 🙂

 

[bbygh0ul]

Thank you both for the replies, it’s all very helpful information for me because I don’t have too much knowledge about this.

I plan on ordering a blood sugar testing kit tonight, I think I’ll get the Sinocare test kit.. I’ll include a picture just because I’m not sure how to describe it any other way. Does anyone know if this one is good enough?

 

[Flower]

All meters sold in the UK have to reach accuracy standards. The meter often used by people on here is the Codefree meter and strips as it seems to have the lowest ongoing cost.

Check how many strips and lancets are provided as sometimes they are starter kits with just a few strips and testing a few times a day gets through them quickly. Tick the VAT exemption box and also make sure you order the mmol/L version for the UK as the US version uses mg/dl which is different

 

[bbygh0ul]

All meters sold in the UK have to reach accuracy standards. The meter often used by people on here is the Codefree meter and strips as it seems to have the lowest ongoing cost.

Check how many strips and lancets are provided as sometimes they are starter kits with just a few strips and testing a few times a day gets through them quickly. Tick the VAT exemption box and also make sure you order the mmol/L version for the UK as the US version uses mg/dl which is different

Thanks for the help again.

This test kit does seem to check all the boxes from the information it say’s about it, I’ll leave a link just in case anyone is interested in it.

https://www.amazon.co.uk/gp/aw/d/B079FTBM9M/ref=ox_sc_act_image_1?smid=A2ZC4JOH70Y8HX&psc=1