Moderate changes, retinopathy

Hi, this is my first time posting on this, just feel too worried and hope someone who has been in my situation can share their experience. Basically I was referred to the ophthalmologist for biannual screenings of my eyes. Last week I was told there were moderate changes in my eyes and the doctor was quite straightforward in telling me it was a progressive condition when I asked if I could prevent it getting worse. I know that improved blood sugars can slow down this progression and my last HbA1c was at 7.9% and I'm determined to improve this. Previous years it has been mid-high 8% and I worry A LOT that it might be too late for me and I'm scared that it will get worse as I'm only 24 and have had diabetes for 15 years now. I also would have hoped to have children in the future but I was told that pregnancy can also worsen the condition.

I'm usually quite motivated and excited about my life but after this news I feel constantly worried and negative (and very teary) about the future and how fast my eyesight will worsen or how bad will it get. I'm annoyed at myself as well as I'm not usually a fan of self pity and know worrying won't help either!

Any thoughts or comments will be appreciated!

Hi Morganite,

The damage already done to your eyes will be irreversible, but looking at these websites:

http://www.webmd.com/diabetes/tc/diabetic-retinopathy-topic-overview

and

https://en.wikipedia.org/wiki/Diabetic_retinopathy

"There are three major treatments for diabetic retinopathy, which are very effective in reducing vision loss from this disease. In fact, even people with advanced retinopathy have a 90 percent chance of keeping their vision when they get treatment before the retina is severely damaged. These three treatments are laser surgery, injection of corticosteroids or Anti-VEGF into the eye, and vitrectomy."

Based on that, I think you can feel positive about reducing the amount of vision loss if you can get your blood glucose under tighter control. If you can get on a DAFNE course, then you would likely find it easier to control your blood glucose levels. My HbA1c dropped from 7.2 to 6.1 after doing the course and I'd highly recommend it.

I can't answer about pregnancy and retinopathy. Having good control is a really good idea before getting pregnant anyway, as I am sure you already know. I would suggest seeking professional advice from your GP about this, and if they don't know, then ask them to refer you to someone who can help.

There are teams that deal with expectant diabetic mothers, and you should be able to referred to a team member to ask your questions and get knowledgeable answers. They will likely be delighted that you are being proactive about it before getting pregnant rather than getting pregnant and then seeking assistance.

High blood pressure also seems to make this condition worse. If you have high blood pressure, then see your GP about getting medication to bring this down. I had to try three different medications before my endo found one that brought my blood pressure down to acceptable levels, so keep on persevering if you need to get this under control.

All the best with it. Be proactive and make a list of what you can do to get help, and you will likely soon stop feeling so worried about it. With diabetes, I've done everything I can to find out as much as possible about it, because if I know what I am up against, then I can fight it more effectively. Get as much information as you can about the retinopathy, and what you can do to fight it, and I'm sure that things will work out better than you think.

Cheers,
Warwick.

Thanks Warwick,

It's encouraging to hear your approach and I will definitely take your advice on finding out as much as possible and doing what I can to prevent the condition worsening. I had attended the DAFNE course 4 years ago but I was also doing my final university exams and with the stress I was under didn't follow the programme exactly. I'm now trying to have a different take on things and see my health as a priority over everything else and have started to record my BG and work out any patterns.

I'm also considering asking to be put on the pump as I have heard this can help improve control? Thanks again for your comment, I feel a bit calmer about the whole thing now and I think that taking action as you said will help stop me worrying so much!

Going on a pump is likely to assist with dropping your HbA1c and give you greater control. There can be a bit of a learning curve, but once you are over that, it is likely that you would have better control.

Cheers,
Warwick.

Would recommend the DAFNE, this really helped maintain the tight bs control I am expected to have.
I attend preconception clinic and need to keep hba1c around the 6% mark...which is the target for a healthy pregnancy.
I have background retinopathy, which was diagnosed 2 months after my diabetes diagnosis. I am on the omnipod pump and find it so much better than MDI, both for control and coping with sensitivity. Definately worth looking into

Thanks Vickyp. I''ve decided to ask to be on the waiting list for the pump, Seems to be the way forward for better diabetes control. In the meantime I've got back into recording my CPs and ratios to try and keep BG level

Hi, I would be more concerned that the advice you were given. Sorry but its not clear where you did DAFNE and who provides your Diabetes care. I am lucky in that my eye screening is reviewed by my consultant, I got a letter about changes in my eyes but he explained everything properly and in my case there were no real changes. You should be getting advice about this from a Diabetes expert who knows the full details about retinopathy, including how it develops and how it can be treated. It CAN be treated and given you obviously ARE taking it seriously then it really should not be a major problem. There are no guarantees in life about anything but if you control your HbA1c there really shouldn't be any reason to be worried To often we are told all the bad things but not given the whole picture. The reason for eye screening is to pick up issues early and treat them, just because you have started to develop a degree of retinopathy it doesn't mean you will go blind and indeed it will necessarily get worse. Keep positive and work on your control, if you struggle with this, ask questions on here or other Diabetes websites, also if in the UK talk to diabetes UK.

Thanks Marke, I've contacted DAFNE online in hope to get a centre number, I graduated in 2011 from the Royal Victoria Hospital in Belfast. When you say Diabetes expert do you mean a DSN or my consultant? It is difficult to know who to talk to regarding concerns about retinopathy. I attend the Diabetes clinic every 4 months and have started back into recording my BGs and CPs using the DAFNE diary in the mobile app which is very useful! After a couple of weeks I will email the DSN or here if I have any questions. Thank you for the encouragement, I feel a lot more optimistic about controlling my HBa1c , I probably struggle a bit as my routine can be quite fast paced at times and it can be difficult to maintain steady readings. I spoke to my optician last week and he showed me photos of the changes in my eyes and said he could see there was some retinopathy which is why I got referred to the clinic but it's nothing for me to panic about andas you said if I focus on controlling my diabetes I shouldn't worry about it.