Retinopathy results

[Bananas]

I have had a recent eyeball x-ray which was a bit of a sci-fi experience (seeing my eyeballs blown up on the computer). The results are that I have early diabetic changes though no further action will be taken, just another eye exam in 12 months time. I have perfect vision. Probably the most scary thing about my diabetes is this retinopathy. I asked the doctor about it and was really trying to find out whether it means that I will suffer loss of sight in the future but was told you can't speculate about it. Not that helpful.

Am I right in thinking that if one's diabetes II is well controlled either by drugs or diet (or both) that it is unlikely that a person would lose their sight? I know that laser surgery could be used if the eyes deteriorate but I am wondering what kind of time span is involved. I'm 42 and was diagnosed only a year ago. Does anyone know of any statistics about loss of sight in diabetes II people?

 

[AJL]

I do sympathise because everytime I go for my eye checks I worry like mad about what the outcome will be - but have learnt over the years to try not to worry about this
I don't know about statistics with regard to retinopathy but I'd had type I diabetes for 38 years and I only have background retinopathy that, so far fingers crossed, hasn't progressed. However it does very much vary from person to person. Glaucoma (which I have) and cataracts (which are starting to develop in my eyes) also have a potential link to diabetes. The best things that you can do as far I'm aware is to control your sugars to the best level that you can and make sure that you have your regular eye appointments. Also if there is anything that worries you in between eye appointments e.g. sudden changes in vision - telephone the eye casualty department for advice.

 

[Copepod]

Bananas - I really hope you don't mean that they took X rays of your eyes?!? "Seeing ... eyeballs blown up on a computer" suggests they actually took digital photos of your retinas, the light and picture collecting part at the back of the eyeball, which is supplied by fine blood vessels, than can become damaged during periods of poor diabetes control eg before diagnosis of Type 2 diabetes. Good control should mean that things won't get any worse over the next 12 months, but if they do, then spotting changes early means that lazer treatment can be given as soon as possible, which protects sight loss due to diabetic retinopathy. However, there are other relatively common eye diseases that can cause sight loss, eg glaucoma, which is screened for by opticians with the air pressure / air puff test, and cataracts, which are also screened for by opticians / diabetes clinics.
I know it's not helpful to be told that it's impossible to speculate about sight loss - but it's true! But, maintaining good glycaemic / blood sugar control is the best course of action for the best chance of preventing problems.

 

[boysie]

Bananas - I had exactly the same results- The photos were done...and a couple of weeks later I get a letter with 2 sentences - "your results show early diabetic changes" and a sentence about them seeing me in 12 months! Im 23 - and had diabetes for about 13 years. My hba1c is now 8.2%. its a bit scary to be told that the diabetic complications have started and it would have been great to have been given some reassurance or an explanation on what exactly it means!! A letter with 2 sentences seems a bit poor...

 

[Lizzie]

I agree boysie. The letters seem really stern and scary and when you arrive the people are not that forthcoming with information. All I get is a sheet with lots of numbers, test results and all it says about my eyes is a small chart: 'retinopathy in left eye: active, retinopathy in right eye: active'. What on earth does that mean? It is really scary when something is happening in your body that you cannot see, your body is doing things that you cannot control. I wish the doctors would realise that and explain things better. My lot don't even take photos any more.

 

[Copepod]

Tell the letter writers!

Bananas, Boysie and Lizzie - can I suggest that you write to whoever is named in your letters and point how how it feels to be on the receiving end, asking for more explanation etc. They probably have no idea, and wil lcontinue to be unaware until someone tells them!

On a related, but not identical issue - last year, when I was sent a stern letter from PCT telling me to go a optician for a digital photo, I searched on web to find an email address (to save my postage costs) and told them why I wasn't going to attend, because (a) the hospital took digital photos at my annual review (b) I already attened another optician for eye and contact lens checks and (c) I didn't want a 50& increas in number of appointments per year. They eventually conceded that it was all due to hospital and PCT comuters not talking to each other, but that they working on it.

 

[Vanessa]

Like Bananas, I find the scary thing about my diabetes is retinopathy. Last March, my optician told me I had diabetic changes but was ok to wait for my first retinal screening with photos. Had that and then in August got a letter from the retinal screening service telling me I had diabetic maculopathy and had been referred to the eye hospital. Finally seen in December to get to the eye hospital and simply have a more detailed examination - results would be with me in a week. Two weeks later I finally learn the changes are not clinically significant but I will need 6 monthly checks and I must keep my blood glucose and blood pressure well controlled. Every member of the clinical team I saw was superb - letters and paperwork unhelpful

In the interim I was so grateful for all those who shared their experiences on this siye and, in particul;ar, successes of laser treatment. It really helped

 

[Caroline]

I know several people who have had similar exoeriences and all asked for an explanation as they were worried. When they still did not get any satisfactory answers they complained to various place including head of screening department and BMA. The resutl was an appolgy and a full explanation.

If we're worried it causes stress, stress makes the sugars higher so it is always right to ask for things to be explained in laymans terms for our reassurance and continued good health!

 

[Jaunty]

Retinopathy screening

Hi Bananas

I share your views on the letters. After my first screening (should have been my second screening but wrong read-code on GP computer meant I was not called), I received the short letter telling me that I had signs of early retinopathy but that no further action was needed. One week later I received a letter asking me to attend my local eye clinic, where I was informed that the screening had not been successful for my right eye. On examining my eye the doctor was able to tell me that the membrane, to which my replacement lens was attached after I had a cataract removed, had become cloudy, requiring a hole to be cut in it to allow the free passage of light to the retina. I have now been given an appointment to meet with the consultant surgeon, but you can imagine my how I felt after being told on one hand that all was basically well and then being told that all was not well. it does not do much to generate confidence.

Regards - Jaunty