Post Pregnancy

[Kateyo]

Hi! I'm new to the site, I had a read while I was pregnant and found it very informative. A bit about me, I'm type 1 and have been for 14 years and have been well controlled in this time. I had my first child last year My hba1c was in 5s in first trimester and in the 4s throughout remainder of pregnancy and as it was very much a planned pregnancy there was no big drop in hba1c. I recently received a letter from the retinopathy screening service to say that there had been changes in one of my eyes. I am absolutely devastated as this has always been one of my biggest fears in relation to diabetes and is the reason that I work so hard to keep things controlled. I don't understand how though as I didn't have any changes prior to pregnancy and was monitored at each trimester at the local eye clinic. I just wondered if anyone else found that they developed changes during pregnancy? I don't know where this leaves me now, I had planned on future pregnancies but will this progress and is it possible for this to regress if it has been caused by pregnancy? I did call the screening service but the person I was speaking with was quite flippant and didn't understand my worry!! I just cannot understand having been well controlled and so strict with myself that this happened and the fact it happened even with excellent control scares me!!

 

[linnyb]

Hi! I'm new to the site, I had a read while I was pregnant and found it very informative. A bit about me, I'm type 1 and have been for 14 years and have been well controlled in this time. I had my first child last year My hba1c was in 5s in first trimester and in the 4s throughout remainder of pregnancy and as it was very much a planned pregnancy there was no big drop in hba1c. I recently received a letter from the retinopathy screening service to say that there had been changes in one of my eyes. I am absolutely devastated as this has always been one of my biggest fears in relation to diabetes and is the reason that I work so hard to keep things controlled. I don't understand how though as I didn't have any changes prior to pregnancy and was monitored at each trimester at the local eye clinic. I just wondered if anyone else found that they developed changes during pregnancy? I don't know where this leaves me now, I had planned on future pregnancies but will this progress and is it possible for this to regress if it has been caused by pregnancy? I did call the screening service but the person I was speaking with was quite flippant and didn't understand my worry!! I just cannot understand having been well controlled and so strict with myself that this happened and the fact it happened even with excellent control scares me!!

Hi, I totally understand your fears & it annoys me when people working within diabetic departments have no understanding. I think my next move would be to get an appointment with your consultant as if this is common he/she will know about it. I am sure that they will be able to help & reassure you. It does sound a very strange one as your hba1c were ace for during pregnancy & having fought through 3 pregnancies as a type 1, I know how difficult it is. I am sending a huge pat on the back & hug. Let me know how it goes if you decide to see your consultant/care provider.

 

[Kateyo]

Hi, I totally understand your fears & it annoys me when people working within diabetic departments have no understanding. I think my next move would be to get an appointment with your consultant as if this is common he/she will know about it. I am sure that they will be able to help & reassure you. It does sound a very strange one as your hba1c were ace for during pregnancy & having fought through 3 pregnancies as a type 1, I know how difficult it is. I am sending a huge pat on the back & hug. Let me know how it goes if you decide to see your consultant/care provider.

Thanks for your reply, really appreciate it I'm due to see consultant soon so will chase up on the appointment and see what he says. I do know that this is possible during pregnancy but I just assumed it was where there was pre existing problems or a very quick tightening of control. I guess for now I have to just get on with it and hope that it improves or at very least doesn't get any worse!!

 

[Mrsass]

Hi @Kateyo I'm currently 27 weeks pregnant and have had changes to my eyes

had slight problems a couple of years ago which were reversed with good control and getting a pump,

then when I went for my first check up while pregnant (only about 6 weeks) I've got signs of maculopathy, whether it is coincidence or just pregnancy that has made this happen I'm unsure which really frustrates me, so far it's not developed further but I'm being monitored every few weeks with it, it's also one of my biggest fears so I know how you feel.

 

[courtenayjane]

Hi,
I am a T1 diabetic and have been for 18 years, I am currently 35 weeks pregnant. I had background changes in my eyes prior to getting pregnant. I had had these for a couple of years, when I first got told there were changes, I was devastated. However, the specialist that I see told me two things - 1) it is very rare, regardless of how good your control is, to have diabetes for as long as you and I have without having there being some changes in your eyes, and 2) that their screening is so good now that what they can pick up as changes, they wouldn't have even been able to detect 5 or 10 years ago. More and more of us are getting told we have changes in our eyes but that is partly because the changes they can pick up now are so minor.
In relation to pregnancy, my hba1c has been 6 before and throughout and my eye changes have not got any worse at all. I have had three checks and all have shown no progression in eye changes. So being pregnant won't necessarily make any issues that you do have any worse!

 

[linnyb]

Thanks for your reply, really appreciate it I'm due to see consultant soon so will chase up on the appointment and see what he says. I do know that this is possible during pregnancy but I just assumed it was where there was pre existing problems or a very quick tightening of control. I guess for now I have to just get on with it and hope that it improves or at very least doesn't get any worse!!

I hope it turns out that any damage is reversible, have they said whether it is slight damage or severe?

 

[Kateyo]

Hi @Kateyo I'm currently 27 weeks pregnant and have had changes to my eyes

had slight problems a couple of years ago which were reversed with good control and getting a pump,

then when I went for my first check up while pregnant (only about 6 weeks) I've got signs of maculopathy, whether it is coincidence or just pregnancy that has made this happen I'm unsure which really frustrates me, so far it's not developed further but I'm being monitored every few weeks with it, it's also one of my biggest fears so I know how you feel.

Ahh congratulations on your pregnancy, it's stressful keeping on top of your blood sugars with ever changing hormones never mind having your eyes to worry about too but enjoy your pregnancy too because it goes sooo quickly, you don't realise until after! It's good it hasn't progressed so far so fingers crossed it doesn't develop further and good that it's being closely monitored. It is very frustrating when you are looking after yourself and it still happens, totally understand! Diabetes - always keeps us on our toes eh!!!

 

[Kateyo]

Hi,
I am a T1 diabetic and have been for 18 years, I am currently 35 weeks pregnant. I had background changes in my eyes prior to getting pregnant. I had had these for a couple of years, when I first got told there were changes, I was devastated. However, the specialist that I see told me two things - 1) it is very rare, regardless of how good your control is, to have diabetes for as long as you and I have without having there being some changes in your eyes, and 2) that their screening is so good now that what they can pick up as changes, they wouldn't have even been able to detect 5 or 10 years ago. More and more of us are getting told we have changes in our eyes but that is partly because the changes they can pick up now are so minor.
In relation to pregnancy, my hba1c has been 6 before and throughout and my eye changes have not got any worse at all. I have had three checks and all have shown no progression in eye changes. So being pregnant won't necessarily make any issues that you do have any worse!

Hi, thanks for your reply! Good to hear that you haven't seen any progression while pregnant. I know I'll have to consider the risks now when planning another pregnancy but it is nice to hear it can be done!! Congrats on your pregnancy, not long to go now, I'm sure you're very excited!!!

 

[Dark Horse]

Hi! I'm new to the site, I had a read while I was pregnant and found it very informative. A bit about me, I'm type 1 and have been for 14 years and have been well controlled in this time. I had my first child last year My hba1c was in 5s in first trimester and in the 4s throughout remainder of pregnancy and as it was very much a planned pregnancy there was no big drop in hba1c. I recently received a letter from the retinopathy screening service to say that there had been changes in one of my eyes. I am absolutely devastated as this has always been one of my biggest fears in relation to diabetes and is the reason that I work so hard to keep things controlled. I don't understand how though as I didn't have any changes prior to pregnancy and was monitored at each trimester at the local eye clinic. I just wondered if anyone else found that they developed changes during pregnancy? I don't know where this leaves me now, I had planned on future pregnancies but will this progress and is it possible for this to regress if it has been caused by pregnancy? I did call the screening service but the person I was speaking with was quite flippant and didn't understand my worry!! I just cannot understand having been well controlled and so strict with myself that this happened and the fact it happened even with excellent control scares me!!

Unfortunately there are several factors that contribute to the development of retinopathy and having good glycaemic control reduces the risk, but doesn't guarantee that you won't get it. However, if you do develop retinopathy, good control will slow its progress.

Be aware that photographic eye screening is very sensitive and may detect changes that ophthalmologists wouldn't see with a slit lamp at the eye clinic. You don't mention whether you have been referred back to hospital. If not, you probably have 'background retinopathy' and that would explain (but not excuse) the attitude of the person you spoke to at the screening service. Background retinopathy is not sight-threatening and the screening interval is the same as for people with no retinopathy. In fact a lot of people reported as having 'normal results' probably do have background retinopathy but it is too small to be seen on the photos. Even if you have been referred to the eye clinic for your changes, there is a reasonable chance that they will not be 'clinically significant' - the only way to know this is to have further tests.

Regarding further pregnancies, you need to discuss this with your diabetologist but I wouldn't worry too much as this stage - just keep up the good control!

 

[Kateyo]

Unfortunately there are several factors that contribute to the development of retinopathy and having good glycaemic control reduces the risk, but doesn't guarantee that you won't get it. However, if you do develop retinopathy, good control will slow its progress.

Be aware that photographic eye screening is very sensitive and may detect changes that ophthalmologists wouldn't see with a slit lamp at the eye clinic. You don't mention whether you have been referred back to hospital. If not, you probably have 'background retinopathy' and that would explain (but not excuse) the attitude of the person you spoke to at the screening service. Background retinopathy is not sight-threatening and the screening interval is the same as for people with no retinopathy. In fact a lot of people reported as having 'normal results' probably do have background retinopathy but it is too small to be seen on the photos. Even if you have been referred to the eye clinic for your changes, there is a reasonable chance that they will not be 'clinically significant' - the only way to know this is to have further tests.

Regarding further pregnancies, you need to discuss this with your diabetologist but I wouldn't worry too much as this stage - just keep up the good control!

@Dark Horse thanks for your reply and sorry mine is so late! Yes it's been graded as R1 so background at the minute. I still struggle with it but understand that good control doesn't guarantee anything. I had my screening about 2 months before falling pregnant and all seemed fine then next screening about 3 months post pregnancy and I get this result, I just wonder if there were a possibility that something happened during pregnancy to cause this change, whether that be BP, hormones, blood volume or all of the above. I suppose that's a question that no-one can answer though!