Pre-proliferative retinopathy. ......I am just scared

[diabeticguy]

At the risk of duplicating existing threads I am posting this just to get it off my chest and maybe it can offer some release from the pressure and anxiety I am suffering.

Eye check was carried out a few weeks ago, I wasn't listening as the results were told me but I did hear Pre-proliferative retinopathy, come back in 3 months and laser treatment. I was hoping to have had the follow up letter by now to confirm the details and possibly discuss them with my GP but it hasn't arrived yet.

Basically I have progressed through 'all clear' to background retinopathy to maculopathy to the recent diagnosis. Basically I am now panicking to the stage that it is the first thing I think about when I wake up and is the last thing on my mind until the sleeping pills kick in and I fall asleep.

Due to mental breakdown and serious depression issues I have been unable to keep a lid on my blood sugar levels and is probably the cause of the eye problems, mental health is now being dealt with but of course I know have to deal with the fall-out from the repercussions of such high sugars. My last A1c tests have indicated that my blood is the best it's ever been and I have started to ensure my exercise regime is increased. Having real problems with weight and my carbohydrate intake could be less.

I am having real problems with my eyes, ironically after the exams they got worse. I am getting disturbances in both eyes, they are very light sensitive,, flashing lights when the eyelids are shut and takes time in the morning for them to focus. Many days I have an incredible headache which I must assume is caused by the constant focusing of the eyes and the blurred vision.

I just do not want to keep boring friends and family with my concerns and worries for the future because they don't understand (they just assume I need glasses) and now I am keeping it all to myself and turning it all inwards and having panic attacks on a daily basis.

If you have taken the time to read this and you are able to offer any kind of reassurance, testimony of eye related treatments I would welcome your input. (I truly would !)

 

[ButtterflyLady]

At the risk of duplicating existing threads I am posting this just to get it off my chest and maybe it can offer some release from the pressure and anxiety I am suffering.

Eye check was carried out a few weeks ago, I wasn't listening as the results were told me but I did hear Pre-proliferative retinopathy, come back in 3 months and laser treatment. I was hoping to have had the follow up letter by now to confirm the details and possibly discuss them with my GP but it hasn't arrived yet.

Basically I have progressed through 'all clear' to background retinopathy to maculopathy to the recent diagnosis. Basically I am now panicking to the stage that it is the first thing I think about when I wake up and is the last thing on my mind until the sleeping pills kick in and I fall asleep.

Due to mental breakdown and serious depression issues I have been unable to keep a lid on my blood sugar levels and is probably the cause of the eye problems, mental health is now being dealt with but of course I know have to deal with the fall-out from the repercussions of such high sugars. My last A1c tests have indicated that my blood is the best it's ever been and I have started to ensure my exercise regime is increased. Having real problems with weight and my carbohydrate intake could be less.

I am having real problems with my eyes, ironically after the exams they got worse. I am getting disturbances in both eyes, they are very light sensitive,, flashing lights when the eyelids are shut and takes time in the morning for them to focus. Many days I have an incredible headache which I must assume is caused by the constant focusing of the eyes and the blurred vision.

I just do not want to keep boring friends and family with my concerns and worries for the future because they don't understand (they just assume I need glasses) and now I am keeping it all to myself and turning it all inwards and having panic attacks on a daily basis.

If you have taken the time to read this and you are able to offer any kind of reassurance, testimony of eye related treatments I would welcome your input. (I truly would !)

I've never had eye problems and I know very little about them but I do know about anxiety and depression.

I think you should make an appointment with your GP to discuss your worries and get some accurate, reassuring info about your condition. Are you on medication for the anxiety and depression? You could also discuss whether that is at the right dosage and type for your current needs. If you haven't already, you could also ask for a referral to a psychologist for some therapy and help with managing anxiety and panic attacks. If I were you I would also say to the GP that because of anxiety you would benefit from getting clear and up to date info about your medical issues.

An anxiety disorder is a genuine medical condition that makes everything harder and needs good management. You don't have to suffer like this with it. Any time you feel it would help, please post about it and people will come by to support and reassure you.

It will be ok. Hugs.

 

[noblehead]

@diabeticguy, I would go asap and have your eyes checked by your gp, if they think it is a matter of urgency then they will send you straight over to the Ophthalmology Clinic for them to examine your eyes to see why you are having these visual disturbances.

If you do need laser treatment you can be assured that they'll only do the minimum that is necessary to halt the progression, it's not as bad as one might think and is only mildly uncomfortable, the Ophthalmologists are extremely experienced at dealing with such issues and will answer any questions or concerns that you might have.

I don't know if you've seen the following before but it has a wealth of information and advice on diabetic retinopathy, have a good read around and pay particular attention to what it says about bg, bp and cholesterol control:

http://www.diabeticretinopathy.org.uk/pre-proliferative.html

Good luck and hope all works out well.

 

[diabeticguy]

@diabeticguy, I would go asap and have your eyes checked by your gp, if they think it is a matter of urgency then they will send you straight over to the Ophthalmology Clinic for them to examine your eyes to see why you are having these visual disturbances.

If you do need laser treatment you can be assured that they'll only do the minimum that is necessary to halt the progression, it's not as bad as one might think and is only mildly uncomfortable, the Ophthalmologists are extremely experienced at dealing with such issues and will answer any questions or concerns that you might have.

I don't know if you've seen the following before but it has a wealth of information and advice on diabetic retinopathy, have a good read around and pay particular attention to what it says about bg, bp and cholesterol control:

http://www.diabeticretinopathy.org.uk/pre-proliferative.html

Good luck and hope all works out well.

Thank you for your reply. The retinopathy guys arranged a follow up to the ophthalmology clinic at the hospital and they gave me the full MOT and is they that said give it 3 months and come back for a re-test / examination in order to monitor any changes. My eyes are much the same as they were then but I have just had more time in the intervening period to scare myself to epic proportions about blindness etc.

 

[noblehead]

No problem @diabeticguy.

The reason why I suggested you have your eyes checked asap is because you say your eyes have got worse since your last examination and your having headaches, when my own retinopathy was active I was told by the Ophthalmologist to contact the hospital or gp surgery if any changes were notable and I was concerned at all, with luck it won't be anything to worry about but I do think the sensible thing to do is to have a quick check-up rather than wait another 2 months.

Try not to worry although I appreciate its easier said than done.

 

[Omnipod]

i think you need to take a deep breath and try and relax. I was diagnosed with the same eye conditions a few years ago. It was a warning that if I did not stop and take control, that these conditions would worsen.
It was probably a good thing because it made me start taking my diabetes seriously.
I now low carb and am on the freestyle libre. My HBA1C was gradually reduced from 11% to 6% over a period of about 2 years. A sudden drop would not be good.
As a result, all my complications have reduced and some are reversing. My eye problems have not got worse. My vision is better and I now only have my eyes checked every 6 months.
There is hope so stop worrying and take control. If I can do it.... anyone can do it. I was probably the worst controlled diabetic ....

 

[diabeticguy]

i think you need to take a deep breath and try and relax. I was diagnosed with the same eye conditions a few years ago. It was a warning that if I did not stop and take control, that these conditions would worsen.
It was probably a good thing because it made me start taking my diabetes seriously.
I now low carb and am on the freestyle libre. My HBA1C was gradually reduced from 11% to 6% over a period of about 2 years. A sudden drop would not be good.
As a result, all my complications have reduced and some are reversing. My eye problems have not got worse. My vision is better and I now only have my eyes checked every 6 months.
There is hope so stop worrying and take control. If I can do it.... anyone can do it. I was probably the worst controlled diabetic ....

Did you have your eyes lasered Omnipod? were they in bad shape before the laser and was there a marked change afterwards? I thank you for the reply.

 

[Jaylee]

Hi @diabeticguy

Similar boat here.. But without the anxiety. & Hba1cs reasonably floating between 7.4 & 6.4 over tha last couple of years.
That's why I'm here.. For a fine tune!

In brief. A couple of months back I lucked out on a job when I found out on induction I needed the eyes of a fighter pilot..
Over due for prescription lenses (work. & time gets in the way.) I booked an Immediate sight test & brought forward my annual retinal scan at the D clinic. Always had the all clear for years with no issues.. In fact no D issues at all...

Ironically?! I currently work at a printing firm.. Lol

The eye test for new glasses was a pig. But the hospital scan was cool.
Then I get a letter referring me to a cataract clinic which I attended last Monday.
Another basic eye test, some more retinal screening photography. & a sort of 3D landscape mapping of the back of my eyes. Like a NASA planet topographic survey??

Any how.. The topographic light time & distance measurement mapping throws up an anomaly "swelling" on the right eye in the "macular" region.. Dead centre at the back. Through all the "super blurry" eye drops I had he let me look at the computer graphics & jpegs on his screen...
Now the consultant did mention slight cataract development. But that's the "least of my concern."

He's referred me to another clinic that deals with this stuff, which the date is set for another couple of weeks..
There was also talk of "steroids" used in the treatment.. No mention of lasers..

Yarp. Inspite of my inherent "cup half full" optimism. I still feel somehow I fell in a massive tank of ***** & discovered a shark..
Good of luck buddy. & keep pushing for the thorough tests & consultations...

Knowledge is the power.!

 

[Omnipod]

Did you have your eyes lasered Omnipod? were they in bad shape before the laser and was there a marked change afterwards? I thank you for the reply.

Yes.... and many people have their eyes lasered.... many have that injection into the eye too. My sister had to have her ritinas attached as they detached.
To put your mind at ease..... Laser is the least obtrusive treatment of them all and works very well. You will be in good hands. But all that aside..... take this as a wake up call and a warning and turn it into a positive. I remember I panicked. All I got was a letter in the post on a Friday PM. I thought I was going blind and to be honest.... all that I read on the internet was gloom. I was even thinking of ending things before I lost my eyesight because I couldnt imagine life without my eyes.

To put your mind at ease.... start a food diary today and keep testing your blood. Eat low carb. I now only eat veg that grows above the ground. No more rice, potatoe, pasta, bread etc. Stay away from fruit juice and alcohol.
I snack on almonds, ham, cheese, greek yoghurt. I make pots of veg soup which has minimal effect on my blood glucose. Eat salads, meat, chicken etc. Try bring you average BG down by 1 mmol a week.
They say damage occurs when your BG goes above 7.7mmol so your post prandial reading is probably the most important. If you can keep post prandial below 7.7, then the rest is easy so it all depends on what you eat and when you take your insulin. Time your insulin with your food.

Are you able to afford the Freestyle libre or have you asked your consultant if you could apply for funding on the NHS for a Dexcom CGM? Im a firm believer in cgm. Its the ONLY way I gained control. I use the freestyle libre so I am able to scan my BG at least 25 to 30 times a day. I could never prick my fingers that much. I only learned what foods to avoid and how long insulin takes to work and how long it stays active in my body after going on the libre.
In the last year of being on the Libre, I have not been ill once or even been to my GP. I have only attended my diabetic reviews. Previous to this, when my BG was not stable and under control, I was always ill or had infections. I would see a GP or attend the hospital at least once or twice a month so in effect, I have probably saved the NHS a huge amount of money. In the future, Id save them even more if I am complication free and this is the reason why I really believe that the NHS should change the way they treat type 1's.

I really believe that the NHS would save a huge amount of money if every diabetic was forced to attend a DAFNE course and be given the Freestyle Libre on the NHS or perhaps a DEXCOM CGM.