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Lovecraft007

retinopathy and pregnancy

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Lovecraft007

I have been doing a little research on diabetes and pregnancy, because my fiance and I are considering getting pregnant. I'm a type 1, 34 years old, diagnosed at 21. I have had a few laser treatments for retinopathy in the last year (scatter laser and macular). So far, things look ok from that; a few floaters in my periphery, but no vision loss and the doc said no need for vitrectomy last time he checked. I'm going for another follow up in a week to check on things though.

 

My concern is that I've done a bit of reading which suggests that getting pregnant can SIGNIFICANTLY (like, up to 70%!) increase the progression of the retinopathy, and this scares the **** out of me! Also, considering my age, and how long I've had the disease, and I crazy to be even considering this?

 

If anyone has had any experience in a similar situation, or any information I might find useful, it would be much appreciated!

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Katrina Stovold

Hmmmm, well, I was diagnosed at 24, Im now 32 and am also 32 weeks pregnant. (Ive been a diabetic for about 8 years before becoming pregnant) My sugars have been pretty good, worst hba1c I had was 8.9% and that was when I was in my first few years as a type 1 diabetic, since becoming pregnant my hba1c has been around 6% to the lowest being 5.7%. I get my eyes tested alot since being a type 1 and have had no changes except when I became pregnant they noticed a tiny change but then nothing... my eyes are totally fine again. I am due for another check this Thursday but dontexpect any changes as my hba1c is excelleent and my sugars are very under control. How has your control been? If good then your eye retinopathy should not be too bad? If poor control then I can understand why you have had to have laser therapy! I really dont think pregnancy affect retinopathy that much, well at least not in my case! Although it might affect it a little bit maybe which is why they want me to have so many eye checks?? but if good sugar control then pregnancy shouldnt affect your eyes too much I would think? This is just my experience....hopefully others will share theirs. xxx Pregnancy has been easy for me....just lots of testing to keep sugars under control, my insulin needs have doubled but gradually so nothing has gone crazy, only 6 weeks to go and I'll be a mum, and Im so friggin excited.....x

 

 

I have been doing a little research on diabetes and pregnancy, because my fiance and I are considering getting pregnant. I'm a type 1, 34 years old, diagnosed at 21. I have had a few laser treatments for retinopathy in the last year (scatter laser and macular). So far, things look ok from that; a few floaters in my periphery, but no vision loss and the doc said no need for vitrectomy last time he checked. I'm going for another follow up in a week to check on things though.

 

My concern is that I've done a bit of reading which suggests that getting pregnant can SIGNIFICANTLY (like, up to 70%!) increase the progression of the retinopathy, and this scares the **** out of me! Also, considering my age, and how long I've had the disease, and I crazy to be even considering this?

 

If anyone has had any experience in a similar situation, or any information I might find useful, it would be much appreciated!

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Katrina Stovold

ps: I wouldnt worry about how long you have had the disease and getting pregnant, you have only had the disease for around 14 years which is not that long compared to others on this forum who were born with the disease then went on to have many healthy kids well into their 30's. x

 

 

QUOTE=Lovecraft007;572381]I have been doing a little research on diabetes and pregnancy, because my fiance and I are considering getting pregnant. I'm a type 1, 34 years old, diagnosed at 21. I have had a few laser treatments for retinopathy in the last year (scatter laser and macular). So far, things look ok from that; a few floaters in my periphery, but no vision loss and the doc said no need for vitrectomy last time he checked. I'm going for another follow up in a week to check on things though.

 

My concern is that I've done a bit of reading which suggests that getting pregnant can SIGNIFICANTLY (like, up to 70%!) increase the progression of the retinopathy, and this scares the **** out of me! Also, considering my age, and how long I've had the disease, and I crazy to be even considering this?

 

If anyone has had any experience in a similar situation, or any information I might find useful, it would be much appreciated!

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fabiam

I think each diabetic reacts to pregnancy differently. I've read about many type 1's that had large babies and delivered full-term with little difficulty. I was diagnosed type 1 at 7 yrs. old and at the age of 22 decided to have a baby (although I wanted to wait till I was a bit older, my ob/gyn recommended starting sooner while my health was still ok). My experience was not like any other diabetics I have talked to. I had IUGR (Intra-uterine growth restriction), pre-eclampsia and was admitted into the hospital at 28 weeks gestation on bed rest. I delivered by c-section at 32 weeks due to the baby's heart decelerations during contractions. She was born at 2 lbs. 7 oz. Very small for the gestation due to the IUGR. I was very lucky and had no permanent damage due to my pregnancy, but decided not to have any more children because of the risks that it held.

All I can suggest is that you get a really good doctor with lots of experience with type 1 diabetics and pregnancy and talk to him about what might work best for you. I wish you the best.

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LydiaH

Hi! I'm a type 1 diabetic, diagnosed at age 8, now 31 y/o. I became pregnant with my son (now 3 years, 3 mos old) and hadn't had any laser tx's. At about my 30th week of pregnancy I had a retinol bleed that started to require laser. He was born at 35 weeks and healthy (thank you God!!) He spent about 5 days in the NICU ONLY for his blood sugars. He was 8lbs 11 oz, 21 1/2 in (both my husband and I were large babies, 10 lbs and 8 lbs respectively). The retinopathy has now completely CLEARED! My retinologist just told me last month at my last appointment. So, I did experience a worsening of the retinopathy later in the pregnancy, which even continued a year after my son was born. But it has all now completely regressed. I've been diabetic for 23 years next month.

 

I'm researching this topic too, as we're wanting to have a second child and my eyes were the only concern to my endo. I just found an article "Pregnancy and Eye Disease" by Elisabet Agardh that was really good. "With current strategies for preventative medical treatment, sight-threatening retinopathy is not very common, and , with proper laser photocoagulation, the visual outcome of diabetic retinopathy during pregnancy has improved significantly." The one thing my retinologist told me is that with added laser tx's, your vision can change, and he brought that to my attention b/c I have 20/20 vision and that COULD change, if I had to have a lot of laser.

 

Different article I read, from the UK EASDEC site redirection "pregnancy and diabetic retinopathy" seems to think the longer you are in good control before you get pregnant, the less retinopathy you'll have during pregnancy. I wasn't under an 8% A1C for about 4 years before I got pregnant. I got down to 6.5% about 6 mos before I got pregnant. So I don't know if I had the retinopathy more severe b/c I wasn't in good control for an extended amount of time before I got pregnant. My A1C during pregnancy hovered around 6%, lowest being 5.8. I'm hoping this next go around, the retinopathy might not be so bad, b/c I'm been under 7% for about 4 years now. We shall see!

 

Good luck! To all of us! If you have/find any more good articles/research let me know!

 

Lydia

 

 

 

 

 

I have been doing a little research on diabetes and pregnancy, because my fiance and I are considering getting pregnant. I'm a type 1, 34 years old, diagnosed at 21. I have had a few laser treatments for retinopathy in the last year (scatter laser and macular). So far, things look ok from that; a few floaters in my periphery, but no vision loss and the doc said no need for vitrectomy last time he checked. I'm going for another follow up in a week to check on things though.

 

My concern is that I've done a bit of reading which suggests that getting pregnant can SIGNIFICANTLY (like, up to 70%!) increase the progression of the retinopathy, and this scares the **** out of me! Also, considering my age, and how long I've had the disease, and I crazy to be even considering this?

 

If anyone has had any experience in a similar situation, or any information I might find useful, it would be much appreciated!

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snjohnston05

Personally, I do not have retinopathy (yet), but awhile back I read a blog on pregnancy and retinopathy and the bloggers experience was quite scary. You are correct in that pregnancy significantly worsens retinopathy, however it does appear to get better in the months following giving birth.

 

Your best bet would be to discuss your specific situation with your doctors and specialists.

 

As of today, I have been a type 1 for 22 years. I am now 14 weeks pregnant and have been through the ringer with my OB/GYN about me even being pregnant...the longer you have diabetes the harder it is on your body and organs...however I was told that complications are much less if you've been diabetic for less than 10 years...count me outta that category :)

 

I can personally tell you that even though my OB/GYN was a little hard on me in the beginning, she has now backed way off because I have proved myself.....I made it past the 8 and 12 week marks (which are major accomplishments for diabetics) and now onto 14 with awesome blood sugars and even better blood/urine checks.

 

Sorry, I got a little winded there!

 

BTW, if I can find the blog I was talking about, than I will post it on here for you to check out....I believe the blogger even accepts emailed questions or concerns (so you can talk to someone who's been there and done that).

 

Good Luck =)

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Lovecraft007

Thank you SO MUCH to everyone who responded!

Please, post links to the articles if you have them. I want to do as much reading going in to my dr's appointments so I know what I should be asking about.

I am currently reading one article "Pregnancy and it's Effect on teh Progression of Diabetic Retinopathy" by Jeff Van Impe, MD., but that's all I found so far.

 

It is helpful and inspiring to read about others who have had diabetes for longer than myself and been successful with pregnancy. It gives me hope!

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CCGIRL

I know that as diabetics our eyes can change a lot during pregnancy so they recommend regular check ups. I also know from experience that our eyes can change without being pregnant. Last year I went in for a routine check up. I had some small changes in my eyes (My father in law is a retinal specialist and deals with diabetics mostly type II everyday). He told me that this just needed to be a wake up call to make sure that I am doing everything in my power to take care of myself. I went back to the doctor this year...NOTHING was seen. Everything had healed. I have one floater and it's been in my eye forever!! My father in law has one (he's not diabetic)...so sometimes they are common. In fact, another one of the doctors in his practice has one in both eyes.

 

All this is to say, for sure check with your doctor to see what he recommends. I know my doctor/father in law recommends routine check-ups during pregnancy to monitor any changes. Let me know if y'all have any specific questions....i'll pass them along to see if I can get any answers.

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belyro

Hey - I'm the blogger. :)

 

Pregnancy definitely can affect retinopathy. The main way it does this is by causing proliferation of the blood vessels in your eye (i.e. new little blood vessels grow that are weak and can leak much more easily than the normal retinal vessels). This happens because you have growth hormones running rampant in your body b/c you're growing a baby. Obviously the better control you have over your diabetes the less chance you have of this, but it can still happen with good control. I had excellent control during my pregnancy and it still happened to me. (Keep in mind, though, that I did go into the pregnancy with pre-existing proliferative retinopathy.)

 

In my case my eyes were both completely stable for the first 2 trimesters (and had been for a few years already) and then during the third trimester I had proliferation in the left eye. The ophtho did more laser treatments (I had been treated in both eyes a few years before) in the left eye, but soon after I experienced a retinal hemmorhage.

 

I also had pre-eclampsia, so the high blood pressure may have contributed to the bleed. That said, my daughter was born almost 10 months ago and my eye is still leaking in spite of my normalized blood pressure. The earlier bleeds have largely cleared up (without a vitrectomy) but my vision remains cloudy and spotty in my left eye thanks to these recurring bleeds. I don't know why it's still bleeding, but I haven't had any new proliferation since the baby was born - the proliferation seems to have been directly related to the pregnancy. My ophtho has mentioned the possibility of Avastin treatments (i.e. a steroid shot in the eye) to help stop the bleeding, but I have to wait to consider that until I'm done breastfeeding.

 

The whole time I experience no changes or bleeding in my right eye.

 

Someone mentioned that it was a "scary" experience. It was. Would I do it again if I knew the outcome? I would! My daughter is totally worth everything that has happened - especially considering that I do expect this leakiness to stop eventually and my eye to clear up with time. Will I do it again for another child? The jury's still out on that one. It depends on what happens with my eye in the next year or so. If it stops bleeding and clears up, there's a good chance that we'll try again. My ophtho has been clear that it's not out of the question. He's commented that the amount of laser treatments I've had by now should help reduce the risk of further proliferation in another pregnancy, so that makes me feel somewhat better about it. We'll see.

 

Having a baby when you have retinopathy is risky, even if you have good control of your diabetes, but it's really a personal choice. Get yourself as educated as you can about it - talk to your ophtho, talk to your endo, talk to your OBGYN, talk to others who have been there (e.g. me!).

 

Good luck!

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Katrina Stovold

Hello! Just had my eyes tested for the 2nd time during this pregnancy.......the first time I had small changes which dissapeared on their own at my follow up screening. I just had my eyes tested again today and there are some new changes again! They call them cotton wool marks, here is Australia they are so proactive about our health which is a good thing I guess but a waste of time and money also! Like today ........I was sent off urgently to see an eye specialist - had to pay out of pocket for this expense as I could only see a private specialist!! He said my eyes have tiny changes due to the pregnancy and bloood flow to the eyes...........he said I am totally fine and the changes will dissapear after I give birth, he booked me in for a follow up in 3 months! So, all good! Seems that pregnant type 1's still get changes to their eyes no matter how good their control is and also afte 20 years of having diabetes he said most diabetics have some vision loss - Ive had diabetes for 10 years only.....good control and exercise etc etc greatly reduces the chance of vision loss! x

 

 

 

 

 

 

Hey - I'm the blogger. :)

 

Pregnancy definitely can affect retinopathy. The main way it does this is by causing proliferation of the blood vessels in your eye (i.e. new little blood vessels grow that are weak and can leak much more easily than the normal retinal vessels). This happens because you have growth hormones running rampant in your body b/c you're growing a baby. Obviously the better control you have over your diabetes the less chance you have of this, but it can still happen with good control. I had excellent control during my pregnancy and it still happened to me. (Keep in mind, though, that I did go into the pregnancy with pre-existing proliferative retinopathy.)

 

In my case my eyes were both completely stable for the first 2 trimesters (and had been for a few years already) and then during the third trimester I had proliferation in the left eye. The ophtho did more laser treatments (I had been treated in both eyes a few years before) in the left eye, but soon after I experienced a retinal hemmorhage.

 

I also had pre-eclampsia, so the high blood pressure may have contributed to the bleed. That said, my daughter was born almost 10 months ago and my eye is still leaking in spite of my normalized blood pressure. The earlier bleeds have largely cleared up (without a vitrectomy) but my vision remains cloudy and spotty in my left eye thanks to these recurring bleeds. I don't know why it's still bleeding, but I haven't had any new proliferation since the baby was born - the proliferation seems to have been directly related to the pregnancy. My ophtho has mentioned the possibility of Avastin treatments (i.e. a steroid shot in the eye) to help stop the bleeding, but I have to wait to consider that until I'm done breastfeeding.

 

The whole time I experience no changes or bleeding in my right eye.

 

Someone mentioned that it was a "scary" experience. It was. Would I do it again if I knew the outcome? I would! My daughter is totally worth everything that has happened - especially considering that I do expect this leakiness to stop eventually and my eye to clear up with time. Will I do it again for another child? The jury's still out on that one. It depends on what happens with my eye in the next year or so. If it stops bleeding and clears up, there's a good chance that we'll try again. My ophtho has been clear that it's not out of the question. He's commented that the amount of laser treatments I've had by now should help reduce the risk of further proliferation in another pregnancy, so that makes me feel somewhat better about it. We'll see.

 

Having a baby when you have retinopathy is risky, even if you have good control of your diabetes, but it's really a personal choice. Get yourself as educated as you can about it - talk to your ophtho, talk to your endo, talk to your OBGYN, talk to others who have been there (e.g. me!).

 

Good luck!

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london14

Hi Lovecraft007! (And all ladies involved!)

 

I'd love to know how you got on since posting, my daughter is now 4, and through my last pregnancy, my eyes went from perfect, to - proliverative retinopathy, macular edema, numerous haemorrhages followed by double vitrectomy.

Since having the blood drained away, my eyes went back to as good as new, from my perspective - but recently I've been told I now have active macula edema again!

We were planning on trying for our second until this came to light! Now I'm filled with worry that retinal detachment could be an outcome of batting another pregnancy.

But still longing for another baby!!

My current status with diabetes is - I'm currently on my 25th year with diabetes, age 27, insulin pump managed since 2010, with a current HbA1C of 6.9 (Best it's ever been!). I've recently been allocated a sensor to help tighten up control in aim of adding a new addition to our family!

 

I'd love some advise on pregnancies after the battle of eye conditions, although I know each of us struggle with different diabetes related issues. Knowing some people have gotten through their nightmares is a comfort.

 

So afraid that I may have left it too late to try again!

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