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Pregnancy & retinopathy

S

Saralou

Member
Messages
19
Type of diabetes
Type 1
Treatment type
Pump
Hi all
Am new to this forum and just needed some help/ advise! I am currently 17 weeks pregnant with 1st baby. I am 39 and have had diabetes for 18 yrs!
I had a retinopathy screen in June this year where right eye had moderate background retinopathy ( same for approx 5 years) and right eye no retinopathy whatsoever. I had another screen in November where I was 10 weeks pregnant but only got the results today. They show moderate background in right eye AND definite maculopathy! And left eye has gone to moderate background with no maculopathy. I am so upset I've been crying all night as I didn't expect such a bad result so early on!
I'm going to try to ring eye screening tomorrow for any more info as I'm so worried. They said on the letter they will send for me in 6 months but if it has progressed that much in 10 weeks than I think I'll ask to see eye specialist at hospital!
Does anyone know if maculopathy can regress or is that it once you've got it!
Would appreciate any info that anyone has I feel sick with worry,
Saralou
 
Hi Saralou and welcome to the forum!

So sorry to read about your problems and the only advice I can give is to ring the Ophthalmology clinic up and ask if you can make an earlier appointment to see the specialist, just explain that your pregnant and you have concerns about how your condition is progressing. I've always found the Ophthalmology clinics extremely helpful and usually they will see you sooner if problems exist and get worse.

Good luck and I hope all goes well with the eyes and your pregnancy.
 
Thanks I will try and ring retinopathy screening service tomorrow. Am also seeing diabetes consultant Monday at antenatal clinic so maybe she will have more info about the retinopathy in my file.
 
Saralou said:
Thanks I will try and ring retinopathy screening service tomorrow. Am also seeing diabetes consultant Monday at antenatal clinic so maybe she will have more info about the retinopathy in my file.
Click to expand...


Most definitely discuss things with the diabetes consultant Saralou.
 
Went to see my optician this morning and he did a thorough check. He said he can't really see any damage by eye but the screening service use extra filters etc. he did a scan of the macula area on the same machine the NHS use which scans the macula in 3d and looks at sections of it. He said that results look perfectly fine with nothing obvious from those images. Do feel a bit better today. Have rang retinopathy screening & they are scanning me again in feb. So hopefully whatever they saw is very minimal. No googling for me anymore!
 
Saralou said:
Went to see my optician this morning and he did a thorough check. He said he can't really see any damage by eye but the screening service use extra filters etc. he did a scan of the macula area on the same machine the NHS use which scans the macula in 3d and looks at sections of it. He said that results look perfectly fine with nothing obvious from those images. Do feel a bit better today. Have rang retinopathy screening & they are scanning me again in feb. So hopefully whatever they saw is very minimal. No googling for me anymore!
Click to expand...

That's great news Sarahlou, I'm really pleased everything looks fine and hopefully the eye tests in Feb will confirm this:)
 
an update rang the retinopathy screening again today as could not understand with a letter saying i had maculopathy why they hadnt referred me to eye specialist. i got through to one the eye graders and he explaiened my results in more detail. he said what they found was literally a speck but because it was on the macula they have to be over cautious and report everything. he said really not to worry as it was very minute and might even be gone on the next screen. so feel far more relieved after speaking with him.
 
Hi Saralou

I got maculopathy in my first pregnancy, it was treated with laser and never returned. I also experienced a deterioration in my retinopathy though, this was quite severe and in my second pregnancy resulted in a retinal bleed at 36 weeks.
I say this not to scare you but to make you aware, if you are not already, that it is common for untreated (ie unlasered) retinopathy to get worse in pregnancy. You should be seen at least every trimester, this is in the NICE guidance. So 6 months time is too far.
Please insist on this. If the retinopathy proliferates, they can laser it and the earlier they catch it the better.
Despite me having problems in my first pregnancy with proliferative retinopathy, I was told in my second pregnancy that all was well and not to come back for NINE months. A few weeks later I had the bleed. In the third trimester in particular things can deteriorate so you do need to be seen quite frequently - insist on this.

PS After having my bleed four months ago, things are pretty much back to normal in my eye now. I had some laser, and it seems to have got things back under control for now (touches wood furiously).
 
thanks for the reply anticarb
i phones the retinopathy service agin last week as i was still concerned and they put me throu to a senior screener who said that they saw a tiny spec/dot on macula but weren't concerned but had to report it. i told them my optician did an oct scn and they said thats what the hospital would have done anyway (the optician said my test showed no maculopathy). he said that now they are aware i'm pregnant they will screen me every trimester so will be getting screened again in mid feb. i'm trying not to worry too much and hoping that it will improve or not get worse by next screen.
thanks for the advice
saralou
 
Hi Saralou

I sincerely hope the dot never gets any bigger, what I have learned about retinopathy though is that it is a very unpredictable beast and the scans are just a snapshot in time, a few times now I have been told all is well and then things have progressed/deteriorated quite rapidly. So the key is to be seen frequently.
Good you are now being seen every tri. Hope you will never have any problems with it. My personal experience was quite negative (with retinopathy, maculopathy was ok) and what I've learned is that there doesn't seem to be much rhyme or reason with this illness, even the docs are stumped half the time. I raised a complaint against my doctor after I had the bleed (for saying, and I quote 'it isn't going to happen') but she just denied everything that was not in the notes, and it went no where.
Even now after being told I am stable I won't let myself believe it and keep thinking 'for how long'.
I've learned to live with the uncertainty but I will never trust I am out of the woods.
Sorry to be so negative. I'm sure a lot of people get through their pregnancies with no problems, hope fully you'll be one of them.
 
thanks for the reply. i am due for second trimester screen on 20th feb and also consultant has referred me tyo eye consultant because of my worries.
hoping i don't need any laser this pregnancy
saralou
 
Are they referring you to a specialist? I've shown background retinopathy at 14 weeks and they saw me in the specialist clinic this week at 21 weeks, the Dr says I have mild background retinopathy and I must be seen every 8 weeks until further notice :s I'm hoping and praying this doesn't progress into anything more serious :(
 
I had another retinopathy screen last week and changes have pretty much gone back to pre pregnancy stage of moderate background and mild background in other eye. no maculopathy at all! am seeing an eye consultant next week but only as i requested it. Feel much happier that changes don't seem to be getting worse!
 
Brilliant news I'm on 8 weekly specialist visits due to mild background retinopathy I'm hoping I get some good news too!!
 
saw eye consultant last week and he just said very minor changes to one eye and mild in other he didn't seem at all worried but i am going back to recheck at 36 weeks! he just said to make sure blood pressure doesn't get high!
 
Great news I'm due back around the start of next month so I'm hoping I get a positive response at the appointment too. Hope pregnancy is going well for you!
 
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