retinopathy

Just had the dreaded letter from my eye examination saying I have early stage retinopathy. I've been wrestling with getting my HBA1C down this year as well as blood pressure and now worry I've caused some of the damage in doing so. I know long term it is better to get the BG down but what is the advice, can doing it too quickly cause more problems?

I think you should speak to your Diabetes team about it. I don't believe that reducing your BG quickly can cause retinopathy but I have no medical training. I appreciate that speaking to anyone will be difficult at the moment but you need expert advice rather than that of other Diabetics.
I know its easy to say, but try not to worry about the letter too much. I have received one in the past and its scary because they don't provide any real advice with it. Personally I think they should speak to you in person and explain exactly what the letter means and answer the questions everyone immediately has when they get the letter. The important thing is it is picked up early and can then be monitored. The fact you have reduced your HBA1C is good it will reduce the chances of it worsening. My consultants opinion is things like this are almost inevitable if you have had Diabetes long term and is not necessarily a major problem.

Thanks for your quick response and your right I'll have to contact the diabetes team in the new year for advice and to find out exactly whats been spotted in eye exam. Unfortunately the letter reached me before the results reached my GP and it is a bit scary and lacking in information.

Richard,
I have had "retinopathy" for about 20 years. I have had 4 bouts of laser surgery (2 on each eye) and have just recently been to see my opthamologist...his assessment is that the laser has been very effective and my vision is good enough for me not to need glasses to drive. I believe the laser has had some effect on my night vision and I also think my colour perception is not as good as it was but I am 67 yrs old!

Enjoy your Christmas break and try not to second guess the report.

Helen

Helen,
Wow Dafne has travelled far. I hadn't realised it had gone down under. Thanks for your story it is encouraging to hear good news, after all the internet is full of horror stories. Enjoy your Christmas too.

...my first ever post! I graduated from DAFNE around October last year. I have been type 1 for exactly sixteen years come the end of this month (I am now twenty-nine going on thirty). I have had background retinopathy for about three years, and have had two lots of eye surgery in one eye and one lot in the other eye. Apparently I don't have bad leakage; it's just that where the leakage is happening is close to the centre of my vision which is what causes the serious problems. Anyway my experience is that the surgery very slightly damages your vision, but you can only notice it when you shut the eye that hasn't had the surgery. Other people on the DAFNE course said they also noticed changes in their vision after surgery. It's like a little shadowy blip, but a weird blue colour. I feared that having both eyes lasered would mean that I would constantly see these blips all the time, but fortunately this isn't true. Your other eye cancels out the bad vision. And the surgery doesn't hurt although my last lot was very intense and I left feeling exhausted.

Now for some reassurance on this subject: getting your blood sugar under better control can stabilize retinopathy and prevent it from getting worse. I think it can even settle down for various reasons. I asked the specialist doctor this very question on the DAFNE course as I obviously fear serious sight impairment and needed to know the facts. She said it can come and go and stabilize with good control, but the rule of thumb is that the better controlled you are, the slower the rate of nerve damage. I've been going to the hospital every four months for the last three years and since carb counting, it is the first time the eye specialist told me that there's a slight improvement. My HbA1c has come down from an average of 8.5 to my last one being 7.1 since carb counting. I still have to go every four months, but hopefully they may start lengthening the duration to six months and then a year etc.

So basically don't worry too much. It can ebb and flow. Just do your best to keep your blood sugar under control through this carb counting business. Honestly; I wish I had done this from day 1, but back in the mid nineties I was basically told to avoid sugar and guess as best as I can. I had no idea that things had moved on until I finally got worried about my eyes and thought I'd best see someone. Now I feel that I'm on the right track.

Sorry for the massive story.

All the best,

Rhys

Thanks for the post. I'd been running an HbA1c of about 8.6 for a long while and been diabetic for thirteen years. I'm working hard to improve it so will hope for the best. Still pretty scarey though.

Rhys,

Sorry my reply was short last night as I was in a hurry. I hope things work out well for you. I would probably share your thought about achieving good control from day 1 but its human nature to think all will be well and its now just history. I don't think we could have been described as being reckless with HbA1cs of around 8.5 it just obviously not good enough. Bit of a warning to others out there to look after themselves as best they can.

Cheers

Richard_g

I am just back from an appointment at the Ophthalmology clinic because my recent eye photographs had spotted 'observable maculopathy'. But after lots of drops and eye poking I was told there is no maculopathy, but I still have to return in 6 months.......

Pleased that they said there was nothing but un pleased on having to return.....

The main reasons for this happening I believe was my blood pressure, there was a few months where I monitored at home and seen high readings, yet I done nothing, I was re medicated and my BP returned to pretty much normal.......

I am quite confidant with the right medication I can avoid getting lasers etc.......

Novorapidboi,

Hopefully things have settled down for you but I dare say it will be a slightly anxious 6 months. Funny you should mention BP because I have just started medication recently for it. I was getting high readings at clinic and initially they seemed OK at home but eventually I had to get treatment. The moral in all these stories is to mind your statistics, HbA1c, BP and cholesterol.