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retinopathy disappointment

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the_anticarb

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hi all

as some of you regulars will know I came on this site about four months ago after having an ostrich approach to my diabetes for many years and developing retinopathy as a result. I quickly discovered the joys of low carbing and have reduced my HBa1c to acceptable levels (6.6) from a high of in the 12s, by following this approach.

At my last retinopathy screening the screener couldn't give me much info but said there was some new damage since my last screen six months ago and that things could get worse before they got better. She then got a bit defensive when I tried to pressurise her for more info such as where has it got worse, by how much, saying that she couldn't tell me as it would need to be passed to the doctor.

I was aware that this worsening before improving could happen in some cases particularly where control is tightened rapidly but was hoping it wouldn't happen to me! Unfortunately I do have a bit of an all or nothing approach to lots of things in general, and now carbohydrates in particular, I find it hard to reduce things gradually as perhaps I should have done. But I was so grateful to have found a way to sort out my blood sugars that I just went for it.

It is very disappointing that now I have finally got my diabetes under control the retinopathy is not any better and I think may be a little worse although screener was reluctant to say (which made me more concerned as if it had not got worse she wouldn't have been so reluctant to tell me anything!)

She said it will go to opthalmologist for review but that takes several weeks, and I'm moving to a different city shortly so will probably not get to see the one here anyway, I'll have to get referrred in to a different system.

My questions are - do I assume there is a 'time lag' between my diabetes control improvement and my retinopathy improvement?
- how long does this time lag usually last
- do I just hang on in there with my new low carb approach and just hope that the getting worse before better thing will quickly turn into just getting better?
- should I just register with a GP on arrival in the new city (in three weeks time) and demand to see an opthalmologist, or failing that go private? I really need to know what is going on!
- can retinopathy improve or is it more a case of once the damage has happened, it cannot be reversed (wihtout laser) but you can just prevent it getting any worse?


Any replies much appreciated. Any one else who's gone thru this please get in touch.

It seems very ironic and cruel that my attempts to finally take responsibilty for my diabetes are being thwarted in this way! :(

But I need to be practical and cope with this best I can

Thanks

Gina
 
the_anticarb said:
My questions are - do I assume there is a 'time lag' between my diabetes control improvement and my retinopathy improvement?
- how long does this time lag usually last
- do I just hang on in there with my new low carb approach and just hope that the getting worse before better thing will quickly turn into just getting better?
- should I just register with a GP on arrival in the new city (in three weeks time) and demand to see an opthalmologist, or failing that go private? I really need to know what is going on!
- can retinopathy improve or is it more a case of once the damage has happened, it cannot be reversed (wihtout laser) but you can just prevent it getting any worse?
Click to expand...
Hi Gina

The time lag is frustrating but not uncommon I think, along with the getting worse before it gets better. My experience is that despite all efforts, the eyes are the last to show significant changes when you have tightened control. For me, it took three years to get stable retinas, so it can take a long time but obviously everyone's different.

If your new diet regime is working for you in other respects, why change it? If you don't stick with it and end up going back to crazy blood numbers, your eyes won't get the chance to stabilise. Definitely stay the course!

It may be possible to get a direct referral from your current eye clinic/hospital. If not, do register with a new GP but also go see an optician. My initial eye changes were first noticed by my optician, and she referred me to the eye hospital where I've been going ever since.

On your last question, it's important to remember that once retinopathy is established it's unlikely to improve, but you CAN halt its progress. Also, laser does not repair damage, it merely shores up existing damage to hopefully prevent further problems, so it is definitely NOT a cure. But I have had quite a lot of laser, and can honestly say my vision is better than it was 10 years ago - according to my optician, measurably so. I can still read the penultimate line on her letter board! However laser is a fairly drastic step if you consider what it's doing, so not something to be taken lightly.

Hope that lot hasn't scared you too much, I think you have the right attitude. Good luck with your move. :)
 
Keg
If you read all of the stuff on the interweb, referring to our Katharine( I think the bit I mean is in the Scottish Daily Herald Archive)
You'll find a case where retinopathy in one patient at least was reversed.
 
I couldn't find that link and unfortunately "retinopathy reversed" is a bit of a sweeping statement. At the moment it depends very much on what stage the retinopathy is at. Initial stages - as observed with many complications - can be reversed through significant improvements in glycemic and pressure control. But not once the condition progresses beyond, although it's unclear exactly when this "tipping point" occurs, and may differ between patients.

There is some interesting work with VEGF (Vascular Endothelial Growth Factor) being undertaken, which may in the future lead to reversal for more significant retinopathy becoming a reality. But we're not there yet!

Sorry for not making this clearer. :oops:
 
Thanks Both, well when I saw the opthalmologist in April he said the damage was 'completely reversible' and as consultant I'd like to think he knows what he is talking about!! It is at the pre proliferative stage, I think one eye is mild and the other moderate, so hopefully that means that so long as it does not go to proliferative stage I'll be okay.

I think I was just assuming that as I'd got my Hba1c down to below 7 I'd 'cracked it', and that the retinopathy would just at the very least not get any worse and at best it would improve.

So was a bit disappointing when it seems that it is actually getting worse, but I suppose I have to be philosophical. There's nothing I can do about how I controlled my diabetes in the past. I can only control it in the present. I just hope I haven't left a legacy of damage from those uncontrolled years.
 
By the way phoned up the eye hospital told them I was leaving town shortly and could I have a cancellation appt, and am seeing the consultant next week! Relief as I need to know what is going on although I am sure to be nervous before I see him. Also is pre-proliferative the same as background retinopathy? Or is it a more advanced level than that?

I don't trust the docs to take my case as seriously as I do myself, I can't risk going blind or losing my driving license or anything and this is stressing me out big time!
 
Great news that you have an appt Gina, a good time to quiz the consultant on this. I think background is the same as pre-proliferative, and at this stage you're just monitored closely with no interventional treatment undertaken. Someone will chip in if this isn't the case!

I'm sure the docs do take your sight seriously, although obviously the patient always has a slightly different perspective on this. All the monitoring and investigation now, are designed to reduce the likelihood of things like losing your driving licence ever happening.

You can't do any more than you already are doing, and the delay in achieving positive results is just going to happen whether you like it or not unfortunately! And remember, stress increases your blood pressure so definitely something to avoid. But there's every reason to be confident you WILL get there.
 
Hi all, just to update you I just saw the consultant and he says I don't have maculopathy at all! So the screening people made a mistake! He said I just have minor background retinopathy, it isn't worse than before and no need for laser or further treatment. He couldn't understand why screening had referred me!

So panic over - think the screening people may be interpreting every speck of dust that gets in the photograph as a lesion or something.

I feel a lot better now but thanks for your replies before.

Glad I saw the consultant! :D
 
I guess the screening people really do err on the side of caution, and that's better than erring on the other side but it's a bit worrying when you are given duff info. He said my macular is completely clear so don't know why they said maculopathy before but I'm glad that it's not true.

Thanks for your concern and supportive pm, phoenix
 
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