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Diabetic Retinopathy and pregnancy

Amberleigh7

Newbie
Messages
3
Type of diabetes
Type 1
Treatment type
Insulin
Hi, I’m type 1 diabetic, have been for 18 years. During the last year I have been diagnosed with Diabetic Retinopathy, I’ve had 100% laser in both eyes and I had a vitrectomy in one eye and have lost half of my vision in this eye...
My good eye I can see normally, but I am under the hospital having injections. I haven’t had an injection since January as it seems to be stable.
Im 28 and want to start a family and I’m really scared of what might happen to my eyes, has anyone else had these problems? Any advice would really help!
Thank you
 
Hi @Amberleigh7 , went through almost same disease pathway as you described here above, though my retinopathy bleedings, laser treatments and ultimately one vitrectomy happened a couple of years earlier when I was around 26yo.
First thing to be clear is though that every single person is different and all experiences are personal and may or may not appear alike for other persons despite the root cause of the misery is the same. That darn diabetes disease...
As the bleedings appeared on both eyes within very short intervals I also had 6- months over the next two years where I were virtually blind on either one of both eyes. Reading was not possible for more than a year, as too many floaters swimming around even in my most clear eye. So that put a shocking hard stop on my studies. And its not until such episode where one really appreciate how magic it is to see anything in this world.
My diabetes therapy had until that time just been one daily shot of long-acting insulin. And then the idea was that you should eat a fixed diet every single day to 'feed the insulin'. That was back then...
Gadgets for home monitoring bg levels had just come out to clinical trials and it became possible to switch onto intensive insulin therapy with 4+ shots per day using fast acting insulin for each of your main meals. I switched on to that. My bg control improved dramatically and I probably also matured with regards to taking care of my body and set better priorities on what I did in life. Over the next 2 years I went through many laser sessions to get both eyes fixed. I also had to go through some corrective surgery as some scar tissue from the bleedings had started to pull in my retina on one eye, with risk of tearing it off completely. That was the time it was decided I needed robot surgery on the retina and then do a vitrectomy at the same time, as that eye did not really clear well up after the last bleedings.

The next 6-8 weeks were really bad, but then suddenly the operated eye cleared fully up. Not a single floater anymore due to the replaced vitreous body. My vision on that eye was back to 20/20. But what the doctors had not told me was that during the surgery procedure they also took the opportunity to really hammer it bad with laser around all the peripheral vision area. Afterwards I totally understand why. But it took some time to get used to what appeared then as sudden 'tunnel vision'. But after a short while your brain gets used to it and you don't really notice it anymore. 25 years later I had a cataract surgery on that same eye to replace a blurred lens. Apparently a frequent 'long-term complication' when having had previous surgery on an eye, as that can disturb the vascularization and nutrition of the lens.

But after getting much better diabetes control back then, I have not had any further changes on my retinas. I go to eye control once every year, and still has a great vision on both eyes. Most important is to maintain your focus area (the macula) in healthy condition, as that ensure you can still read and function in most circumstances. Loss of some spots in the peripheral areas are less important, especially if you still have two functioning eyes as they can compensate for each other to give you 'the full picture'.

Again, this was just my story. We are all different and I am certain we have several fellow diabetics on this forum with other or similar stories to share with you. Number one priority is though in any case to get the bg levels in as good control as possible.

Best wishes and fingers crossed!
 
Thanks for your reply! Sounds scary !

So hard having diabetes!!

Have you had any children? Did it make your eyes worse?
 
Thanks for your reply! Sounds scary !

So hard having diabetes!!

Have you had any children? Did it make your eyes worse?
Hi @Amberleigh7 I had some of the earliest (pleistocene in today's terms) laser treatment for retinopathy for both eyes from 1979 - 1983. My right eye haemorrhaged so badly vision was totally obscured by what seemed utter blackness for a few weeks. Eventually it drained enough for King's College Hospital ophthalmologists to see what had happened and then the systematic sealing off of the perforated retinas began. The photograph on the left was taken in 2014 and the reading glasses round my neck are the only visual aids I have used throughout my years of Type 1 - 1959-2013. Although my experience was nowhere near as alarming as @Celsus above, I have written this to try and put some positivity into the labyrinth of diabetes. I have a wife of nearly 36 years, a daughter aged 33 and a granddaughter aged 6. In 1979 I never thought I would see any of these gorgeous people. Look after your diabetes as well as you can and you might be as lucky. Let's hope!
 
Thanks for your reply! Sounds scary !

So hard having diabetes!!

Have you had any children? Did it make your eyes worse?
Hi there. I am 47 and have 3 kids. I am partially sighted so can't drive but can do everything else! This occurred due to diabetic eye problems which began in pregnancy aged 30. I had average to bad control prior to pregnancy and then had very tight control during the pregnancy however my eyes deteriorated with bilateral retinopathy and did not respond to laser treatment. This was unusual. Eventually I needed an op (vitrectomy) on both eyes which had a tedious recovery process that meant I could not even look after my 18 month old! The eyes are now stable and I needed no further treatment thanks to Moorfields. I am telling you this because you are not pregnant yet and not to scare you. As mentioned, you do need to get stable control (I know that is very very challenging) before pregnancy to have the best chance because the pregnancy MAY destabilise your condition My feeling is that it was transistioning from high ish rollercoaster glucose levels to pretty good control and then out again to more chaotic sugars (new mum with a premature baby) that might have tirggered the rapid progression. Hope that helps rather than panicks you....x
 
@Amberleigh7 ladies with diabetes trying to conceive are advised to have a hba1c under 6.5%. What is your current hba1c? There are also very tight blood sugar targets during pregnancy (fasting under 5.3, 1hr after eating under 7.8, 2hrs after eating under 6.4) because high blood sugar creates a risk of foetal abnormality and miscarriage. But if your hba1c is currently far in excess of 6.5% then suddenly achieving the strict control required for pregnancy won't do any good for your retinopathy, you would need to gradually step the numbers down to controlled levels because suddenly flicking from uncontrolled to controlled can exacerbate retinopathy. It's worth seeking advice from your DSN in a pre conception clinic, type 1 ladies are advised to take high dose folic acid and they get more scans. Apretty conception chat with your DSN would ensure you had all the guidance on how to meet the tight pregnancy targets in the best way not to aggravate your pre existing retinopathy.
 
@Amberleigh7 ladies with diabetes trying to conceive are advised to have a hba1c under 6.5%.

Reason for my outmost respect for any diabetic lady that undertakes this challenge to become a mother.
Darn, the world would be a better place if we all could manage to have a hba1c under 6.5%.

But despite all the challenges for life, there is nothing as rewarding as a child!
 
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Thanks all for your replies, I had my checkup and my HBA1C is 8.4 I’ve been giving a freestyle libre to test as I am looking to get pregnant.
I had my checkup with the eye specialist and he said that I’ve had a lot of treatment so should be okay during pregnancy, but I need to get my blood sugars lower.
So I’m on a mission!!!
 
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