Eye issues

[Emck]

Hi all,

my husband and I are hoping to start TTC in the near future. I’ve been attending my local pre-pregnancy clinic and had brought my sugars into target. Then came covid…

My hba1c is a little higher than they would like (55) but has been pretty stable recently.

I’ve just gone for an eye screen at the request of the pre-preg nurse so that we could get the all clear to start and it has come back showing signs of maculopathy. They want be back in for review in 6 months.

I’m absolutely gutted to have heard this news and have no idea what impact it’s going to have on our plans. I had my eyes checked 6 months ago and they were fine.

Has anyone else had any eye issues pre-preg and how did that end up?

thanks!

 

[Emck]

Bumping this in case anyone has any new experiences to share.

The outcome of this was that the consultant wasn’t worried about the screening results and I’m due for another screen in September.

We still haven’t started TTC yet as I just can’t seem to bring my hba1c below 55 and i want to make sure I can actually achieve the pregnancy targets before trying.

I’m due to start a pump in the next few months and plan on using a cgm to try to really get my control on point.

 

[Charlieann94]

Hey!

I'm currently 6 months pregnant and recently had been told I have maculopathy, turns out I don't and I just have slight background retinopathy after further testing. I was due to go on my pump like a month before falling pregnant and luckily they still let me on it. It's been an absolute game changer and helped me so much through this pregnancy. I got my hba1c down to 48mmol before falling pregnant and I'm now at 30 or 31mmol (whichever is 5) which is great. Have they started you on the higher dose of folic acid? If I can answer any other questions for you please let me know, I'm happy to share my experience so far.

 

[Emck]

Hi @Charlieann94 thank you so much for responding!

I think I might be in the same boat as you - more like background retinopathy near the macula than maculopathy itself. The consultant didn’t seem concerned and approved me to start trying.

I wanted to bring my sugars down further before trying (slowly to avoid further eye problems). My hba1c is around the mid 50s at the moment so I’m not too far off target.

I think I’m going to get set up with my pump and have my eyes checked again in September before we start trying. I have bee diabetic for 24 years now, so I know that eye issues are kind of inevitable but the further complications that pregnancy brings do terrify me a bit!

Do you use a Dexcom with your pump? I’m thinking of getting using one instead of my libre.

 

[Charlieann94]

Hi @Charlieann94 thank you so much for responding!

I think I might be in the same boat as you - more like background retinopathy near the macula than maculopathy itself. The consultant didn’t seem concerned and approved me to start trying.

I wanted to bring my sugars down further before trying (slowly to avoid further eye problems). My hba1c is around the mid 50s at the moment so I’m not too far off target.

I think I’m going to get set up with my pump and have my eyes checked again in September before we start trying. I have bee diabetic for 24 years now, so I know that eye issues are kind of inevitable but the further complications that pregnancy brings do terrify me a bit!

Do you use a Dexcom with your pump? I’m thinking of getting using one instead of my libre.

Hey!

That's great news and sounds like a good plan. I was put on the dexcom as soon as I got pregnant so you should get that when you do. Until then just over do it with your libre! Pump will honestly change your life and make pregnancy so much easier!

 

[Emck]

Thanks @Charlieann94 !

I’ve just got my letter for my eye screening and as always, it has put me into a world of anxiety. I don’t know why this happens every time the appointment comes around! I understand how important it is to do the screening but the weeks leading up to it just make me so worried.

 

[Charlieann94]

Aw! Try not to stress too much. I think you'd know if there was anything serious going on. But, I do know its easier said than done! Good luck x

Thanks @Charlieann94 !

I’ve just got my letter for my eye screening and as always, it has put me into a world of anxiety. I don’t know why this happens every time the appointment comes around! I understand how important it is to do the screening but the weeks leading up to it just make me so worried.

 

[kelp84]

Hey! Just seen this thread I’m 6w pregnant with maculopathy and going through a world of anxiety!
Just been approved for the Dexcom and things were looking positive for a pump … but since finding out I am pregnant my control has been so much better (a million injections thou!)
Did you push for extra scans or anything? I wasn’t sure if there was any options to get treatment for my eyes to perhaps try to slow down the progression!
Been diabetic 30 years - struggle to get in the green hba1c … bounce around 7% and always been so scared of going blind!

 

[Charlieann94]

Hey! Just seen this thread I’m 6w pregnant with maculopathy and going through a world of anxiety!
Just been approved for the Dexcom and things were looking positive for a pump … but since finding out I am pregnant my control has been so much better (a million injections thou!)
Did you push for extra scans or anything? I wasn’t sure if there was any options to get treatment for my eyes to perhaps try to slow down the progression!
Been diabetic 30 years - struggle to get in the green hba1c … bounce around 7% and always been so scared of going blind!

Hey! congrats. I haven't had any extra scans, I booked a private one at 6 weeks and then had my dating scan at just over 12 weeks, 20 weeks then I have my first growth scan on the 17th (28 weeks) then I think you have them depending on how baby is growing! I think the best thing in regards to your eyes is optimum control, but have you informed your diabetes team/gp you're pregnant? You will need a couple of extra eye appointments due to the pregnancy. Good luck x

 

[Emck]

My screening letter is still showing maculopathy and I’ve been kept on the 6 month surveillance program. I’ve booked an appointment with my own optician to try to get more information, as the letters just don’t explain anything.

It’s so disheartening, I’ve been working so hard on my diabetes for years now to TTC safely and I just feel that there’s never going to be a good time.

 

[Emck]

Hi All,

As a bit of an update, I’m now about 10weeks pregnant!

I had an eye screen (coincidentally) about 5 weeks ago which showed background retinopathy. I also saw my own ophthalmologist last September, who couldn’t see the maculopathy found on the previous screening.

I have just had a letter through to attend my first official pregnancy eye screening (I’ll be about 13weeks) and I’m starting to get the eye screen anxiety.

I’ve been reading all sorts of publications about how it’s basically a certainty that retinopathy will get worse in pregnancy and now I’m wondering why I’m putting myself through this!!

Have an endo appointment tomorrow so going to chat to her about it then. Basically just a bag of nerves now

How is everyone getting on here? Any positive stories to share?

 

[Salmah]

What's the problem with your eyes ???

 

[Emck]

What's the problem with your eyes ???

Hi @Salmah, the above post should be able to fill you in.

 

[EllieM]

As a bit of an update, I’m now about 10weeks pregnant!

I had an eye screen (coincidentally) about 5 weeks ago which showed background retinopathy. I also saw my own ophthalmologist last September, who couldn’t see the maculopathy found on the previous screening.

Congrats on your pregnancy. That is very exciting.

I know the eye stuff is potentially scary but as a veteran of on again off again background retinopathy I think you have to remember that these scans are the reason that so few diabetics lose their site these days. Fifty years ago it was a different story but today's treatments are genuinely better and more successful.

Having a pump and a cgm should hopefully allow you to keep your levels steady(ish) and get the best possible result for both your baby and your eyes.

Good luck.

 

[Emck]

Thanks all for your replies.

I had a check up at the eye clinic today (I’m about 13 weeks now). I had scans and saw the doctor and she’s content that my eyes are still stable and showing mild background retinopathy.

She’ll see me again around 26 weeks.

I don’t know if it was standard practice to be called to the clinic, or if I was called due to previous history. It was quite a relief to see the doctor right away rather than waiting a few weeks for results.

 

[Emck]

Another update from me - 23 weeks now.

I went back for another review at the eye clinic. The doctors were happy to see that the background they saw at my last check-up had regressed.

They were really happy with my eyes and don’t want to see me until after the baby arrives now!!

Tight control can clearly really help!!

If anyone else is in the same boat, be reassured that things can get better and that if you do have issues, the eye team will really support you and look after you!!

 

[Antje77]

What a wonderful update @Emck !

 

[lovinglife]

Great news

 

[Mrs T 123]

You must be sooo pleased with that news. Take good care of yourself and best wishes for the birth

 

[Emck]

Thanks for all your lovely messages!

I was quite emotional leaving the eye clinic this week! I know that there’s still the post-birth rollercoaster to get through, but feel so well supported by the team at the hospital.

Different eye issues have followed me for years now and put me off trying to have a baby for a long time (until I was happy with my control). So nice to have positive news!!