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Change in Retinopathy - Should I worry?

J

Jolo

Well-Known Member
Messages
70
My Retina check came back and my GP says there's a slight change. Nobody's done much about it or seems particularly worried, except a worried glance from my nurse. I want to have a baby in the next year or so and have read forums on this subject,and it sounds like there's complications involved with regards to retinopathy. I've never had a change in my retina before and dont know whether I should do anything about it or not??? Is there much anyone can do to help it - I'm not blind or wearing glasses...yet? :***:
 
not an expert on this, but I'll post what another forum member posted to another member in the same situation. You must be worried, I thought it might help car your nerves a little - others can fill you in and tell you more detail to help you out in what must be a worrying time. The Nurses worried glance might have been one of concern how you would take the news after all.

from the thread http://www.diabetes.co.uk/diabetes-forum/viewtopic.php?f=34&t=25834
 
Thanks Tricki, i was just wondering after reading the other posts on the subject, whether other people had lasar because their eyes started blurring or what, and whether it's worth having lasar even tho my vision still semi ok (i'm slightly out of sync but not bad enough to need glasses according to the optician).
Thanks for the consoling words - true about the nurse - she probably thought i was going to bite her head off :lol: i bet she's used to all sorts with us diabetics around

Would like advise from anyone who knows much about retinopathy and how far gone it has to be before you actually start needing a guide dog 8)
 
Hi - I have retinopathy and am planning a second pregnancy, and have read up a fair bit on retinopathy and pregnancy in the past few weeks.
In my particular case, i had pre proliferative retinopathy before i became pregnant and during my pregnancy it progressed and i needed laser on one eye at 36 weeks. now a year later the other eye has caught up somewhat and I have been advised not to get pregnant until it is sorted.

Pregnancy can increase retinopathy in two ways
1. If, like me, you suddenly find yourself pregnant and didn't get your hba1c down low beforehand (eg it was an accidental pregnancy) then going from high to low in a short space of time can increase retinopathy.
2. During pregnancy your body produces growth hormones, these actually make the capillaries on your eyes grow so pre proliferative may become proliferative. which is what happened to me.

In order to avoid this, it is essential to get your eyes checked before you get pregnant - if, like mine, they need lasering, then they can do that but it sounds like yours are not at that stage yet (you need to have retinopathy a while before it gets to the laser stage). Also make sure your hba1c is nice and low before you think about conceiving (which you will need to do anyway if you want a healthy baby) and don't come off your contraception before you've been given the green light to conceive by your preconception team.

It may be that your eyes have mild retinopathy but don't need to be lasered before you get pregnant. in this case you will be reviewed regularly during the pregnancy, every 6 weeks or so, and if they do proliferate they will be lasered straight away. Its safe to do this in pregnancy and whilst better to do before pregnancy if it's bad, they can still treat it very successfully during the pregnancy. My right eye was lasered at 36 weeks and responded really well - i just wish they'd done my left eye then too as it needs doing now, when we want to start trying for our second, but have had to put it off.

What kind of retinopathy have you been told you have - background? pre proliferative? If background I wouldn't worry, just make sure you get your eyes checked regularly. They will do this at preconception clinic anyway. If pre proliferative there is a slight chance they could progress to proliferative during a pregnancy but as i say, the first sign of this and they will laser away the damage.

It can be a bit scary, I have spent the last week worrying myself silly about it all, i thought they might tell me I couldn't have any more children, but it's really not as bad as that and my retinopathy is at a much worse level than yours (from what you've said).
PM me if you need any more info
 
Hey thanks for all the info, Anticarb! :thumbup: It's great this website. Any worries and you just ask it and there's always someone (usually lots of people) who are in exactly the same situ themselves, or even better still, have been there, and know how to advise.
It doesnt sounds like i need to worry too much; I guess i'll wait until my sugars are settled and i'm ready to conceive before i bother getting them checked out :wink:
Thanks for you help
Jolo x
 
Hi Jolo. What you don't say in your posting is how well controlled your blood sugar is? Do you have a meter and do you check your BS? What was your last Hba1C? There are many causes of retinopathy but obviously you want to eliminate continuous high blood sugar as a cause.
 
Hi Daibell,
In the past my Hba1C's and BS control has been AWFUL. Last Hba1C was 10!! :roll:
However, the past month or so after 13 years of a dont care attitude about my diabetes, I've finally come round, and i'm testing like a testing thing to get it sorted. I'm currently testing on average 10 times a day!(now the NHS are NOT going to like that are they!). This website has been the best support i've ever had and i've learnt more in the past weeks than i have in the 13 years of diabetes! I know for a fact it's been my bad control and running high most the time that has caused it, and am scared I've started something that's going to digress as i get older. Hopefully though if i can get my sugars stable and round about 5/6 then there wont be any more damage? I've managed to get it so i'm now just about always under 10mmol, and normally about 7 (that is wow wow wow for me) and i'm working on getting it down to 5/6
I hope my nurse is amazed or i will be a bit offended to be honest. one great thing about her is she totally understand my chocoholic prob! coz she is too :mrgreen:
J
 
Jojo,

That's great that you're trying to get your hba1c down. One thing you should bare in mind, though, if your control suddenly improves your retinopathy may get worse. Just something to bear in mind so you don't get a shock if there are further changes on your next test done. Might be worth talking to your diabetes team to make sure you get your levels down safely.

As for the retinopathy, you're getting your eyes tested regularly so they will make sure that any changes are noted and action is taken at the right time. I've been diabetic for over 20 years and got my first letter tellin me I had background retinopathy about two years ago. Apart from a few years when I was younger my control has always been good. I was devastated and so scared. After I got my last results (December) I booked an appointment with one of the doctors at the eye screening clinic to better understand the nature of the changes and what I could do to prevent them getting worse. I was terrified going in but it really helped put my mind at rest and answer all those niggling questions.

Em
 
Yes beware getting your sugars too low too quick. I did this and, coupled with the pregnancy, my right eye proliferated and now one year post partum my left eye has caught up too. It's a real bu**er isn't it, just when you do what they've been telling you to do for years and get your sugars controlled, then you find out that can actually make it go WORSE for a bit! Now what other illness gets worse when you try to make it better? Crazy disease....

Definitely get your eyes checked before you TTC - preconception should do this anyway. i was about to TTC on my GP's advice but now I have been told to put things on hold by the consultant - I'm hoping they can sort me out quickly so I'm not waiting too much longer.
To answer your question about retinopathy and how far it needs to go before you need a guide dog, quite far I think. Becoming completely blind is very rare. The problem with retinopathy is that it is asymptomatic until the advanced stages. By then it may be too late. Don't make the mistake I made - when I had background/mild pre proliferative, because I was not referred to the eye hospital I got complacent and did not realise how serious it was. Then I got referred to the eye hosptial when it got a little further along the line, and shaped up my control somewhat, but then fell pregnant and had to get very controlled very fast. This combined with the damage of the preceeding years really lit the touch paper. It has been a massive wake up call for me I can tell you. Also, the effects of pregnancy can continue for up to a year post partum. It really is a very cruel disease, this retinopathy. But they are coming up with new treatments all the time, as I say it is rare to go blind. You also need to watch your blood pressure, cholesterol and iron levels not just your blood sugar if you really want to stop it progressing. It sounds like you are only in the early stages but it can progress quickly in pregnancy i'm afraid - so make sure you are given the green light by preconception before you TTC. Good luck
 
This is CRAZY! :x but i've already started and its so much better i dont really want to cheat again just to make it worse so its not so good IYKWIM! I wish this disease was a person you could make faces at and curse at - ha that would make it not so bad :twisted:
I reckon it's high time i got another appointment just to check up on it. What can I take or what treatment is there available to stop it getting worse? At what stage can you have lasar?
I'm not planning on getting pregnant for about a year anyway, so hopefully if i get sorted out now with my Hba1C and eyes and whatnot, I might get a chance of it being OK. :crazy:
One thing i find hard is my basal requirements change all the time so keeping control of it is almost impossible. I did a whole day eating practically nothing other than salad leaves just a few days ago and my sugar was still up and down like a yo-yo but just at a lower rate than it used to. I still manage to shoot up to 16 occasionally for apparantly no reason... i'm seriously considering going back on an insulin pump (i gave it up about 7 years ago as i didnt have the patience). Now i think i am ready to take the plunge with all the hard work that comes with it? I dont know, i've got mixed feelings. I'm thinking the Veo (is that the one where you can see ur BG at all times and it warns you of a quick change in BG and if you're hypo/hyper?) as i think that in pregnancy it's going to be a nightmare trying to control it when it's always uncontrollable at the best of times! Not to mention black fingertips from continuous stabs!
Thanks for ur advice.
Jolo x
 
Hi Jolo, there's a supplement called Pycnogenol that some people take that is reputed to help with retinopathy, there's a link on another thread to some research, may be worth a look, not sure how to show you where the thread is but if you put pycnogenol into the search function it will come up. It's a herbal supplement, you can get it from Holland and Barret in fact they're selling it half price at the mo (no i don't work for them!). I'm going to start taking it, i haven't got anything to lose and it may just help.

I'm also watching my blood pressure, cholesterol and taking iron supplements.

I really want to get pregnant again as soon as they give me the green light, so am on a major health kick now for that and also the retinopathy.

Excuse pun, but I really feel like my eyes have been opened in the past few weeks to what an insidious beast this retinopathy can be. I can't turn back the clock, but I know now that I need to make every single day for the rest of my life a day where my blood sugar is controlled.

you sound like you are only in the early stages so if you get it sorted now, you'll be fine - but it can and does creep back in if you let your control go for any period of time. I just wish I had realised before what I am dealing with, but hopefully it is not too late for me, and once my left eye is lasered (right one done last year) then I can keep it under control and it won't come back.

Best of luck
 
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