Retinopathy

ConorD29 · Jun 3, 2017

Hi all! I'm new to the forum. Ive been a type 1 for exactly 20 years, I'm 29 and I'm looking information on "diabetic retinopathy" I'm at the early stage which doesn't require treatment. My diabetes is very well controlled but I do know were I need to make changes. I had a very turbalant few years in my teenage days. But I'm well on track now as an adult. Can retinopathy be reversed with good control? What are other people's experiences of this?

azure · Jun 3, 2017

@ConorD29 Youve started a poll at the top of this thread but there is no question. Was this a mistake? I can amend it for you.

Tagging @himtoo and @noblehead as they have good info on this subject.

ConorD29 · Jun 3, 2017

Hi there, I'm new and not quite sure how/where to post properly as of yet

azure · Jun 3, 2017

ConorD29 said:
Hi there, I'm new and not quite sure how/where to post properly as of yet

No problem. I've removed the poll for you

If you want to do a search, you can use the Search facility top left.

azure · Jun 3, 2017

@ConorD29 You might also want to have a read of this section:

http://www.diabetes.co.uk/forum/category/diabetic-retinopathy.79/

ConorD29 · Jun 3, 2017

Great! I don't have permission to post threw the app. So I'm haveing to go threw my email confirmation to post. Is there anything I need to do to get permission to post directly threw the app?

amylh1 · Jun 3, 2017

ConorD29 said:
Great! I don't have permission to post threw the app. So I'm haveing to go threw my email confirmation to post. Is there anything I need to do to get permission to post directly threw the app?

Hey Conor, I have background retinopathy and I've only been diabetic for 5 years (badly controlled for a long time, getting there) but lady I work with is 42 - she has had diabetes since she was 4. She has had a few spells like yourself through her teens but never anything crazy and she was diagnosed with BG retinopathy in her early 30's, she seems to think we all get it at some point? And no as far as I know of its not reversible but would like to know more about it myself as google isn't giving me much lol. Will ask at my next clinic app.

amylh1 · Jun 3, 2017

Oh just to add her retinopathy has not gotten any worse over the past decade but is still there. I think her average hba1c is 7-8% if that's any help

noblehead · Jun 3, 2017

Hi @ConorD29

Some members have said they've managed to reverse the condition, unfortunately my retinopathy went on to the proliferative stage.

If you have a read of the following it gives some excellent advice & information on diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/back_diabetic_retinopathy.html

Best wishes.

azure · Jun 3, 2017

ConorD29 said:
Great! I don't have permission to post threw the app. So I'm haveing to go threw my email confirmation to post. Is there anything I need to do to get permission to post directly threw the app?

You could try signing out of the app then re-opening it. If you're still having problems, do let me know. The app does have glitches sometimes so it could well just be that.

You may find it easier to use the website to post rather than the app - at least for now

ConorD29 · Jun 3, 2017

azure said:
@ConorD29 Youve started a poll at the top of this thread but there is no question. Was this a mistake? I can amend it for you.

Tagging @himtoo and @noblehead as they have good info on this subject.

amylh1 said:
Hey Conor, I have background retinopathy and I've only been diabetic for 5 years (badly controlled for a long time, getting there) but lady I work with is 42 - she has had diabetes since she was 4. She has had a few spells like yourself through her teens but never anything crazy and she was diagnosed with BG retinopathy in her early 30's, she seems to think we all get it at some point? And no as far as I know of its not reversible but would like to know more about it myself as google isn't giving me much lol. Will ask at my next clinic app.

Hi thanks for the reply, I hope your keeping well well? It's completely new to me I've never had any sort of complications until now unfortunately, and it was a kick up the backside I think I needed as I got a bit lazy with my diabetes recently because of a bizy life.
The admin gave a link to more post about retinopathy and I got some great info there. I googled it and upto 80% of diabetics get retinopathy at some stage?

ConorD29 · Jun 3, 2017

noblehead said:
Hi @ConorD29

Some members have said they've managed to reverse the condition, unfortunately my retinopathy went on to the proliferative stage.

If you have a read of the following it gives some excellent advice & information on diabetic retinopathy:

http://www.diabeticretinopathy.org.uk/back_diabetic_retinopathy.html

Best wishes.

Hi thanks for reply, what is proliferative stage? And what steps are your doctors taking at this point to correct it? I'm trying to gather as much information so I know every step and stage there is to try and avoid getting any worse. How long have you been a diabetic? And are you T1?

ConorD29 · Jun 3, 2017

azure said:
You could try signing out of the app then re-opening it. If you're still having problems, do let me know. The app does have glitches sometimes so it could well just be that.

You may find it easier to use the website to post rather than the app - at least for now

I'll try that now and I'll let you know how it goes azure thanks

tigger · Jun 3, 2017

Hi have you been diagnosed with background? I have had this a few times on the scans but when actually seen by a dr (as opposed to a dr or technician reading a scan) they've given all sorts of reasons as to why this was not accurate. I am very grateful after 34 years that this is the case but went through a lot of stress when this happened through not knowing what this meant and being handed literature produced by the royal national societyfor the blind!

My advice if you have just received a letter following a scan saying this is the case is to ensure you get them to book you an appointment with an opthomologist to investigate further (this should be done anyway but may take some time). It never hurts to tighten control but be careful if making very quick changes as sudden large drops in hba1c can worsen retinopathy so discuss it with your consultant.

Good luck and wishing you all the best with this

noblehead · Jun 4, 2017

ConorD29 said:
Hi thanks for reply, what is proliferative stage? And what steps are your doctors taking at this point to correct it? I'm trying to gather as much information so I know every step and stage there is to try and avoid getting any worse. How long have you been a diabetic? And are you T1?

Sorry for the late reply, a busy weekend.

A explanation of Proliferative Retinopathy:

http://www.diabeticretinopathy.org.uk/proliferative.html

Do navigate around the above website, it really does have some useful info and advice.

I've been problem-free for the last 12 years after treatment, I still attend the Ophthalmology Clinic for regular check-ups.

I have type 1 and have lived with the condition for 35 years, try not to stress about the condition @ConorD29 and heed the advice on keeping bg, bp and cholesterol levels in check. Good luck.

Dark Horse · Jun 4, 2017

After 20 years of diabetes, nearly all people with type 1 have some level of retinopathy. Background retinopathy does not affect eyesight and does not need treatment. For a lot of people, the retinopathy never progresses beyond background. If any changes are spotted at screening that suggest sight-threatening retinopathy is developing the patient will be referred to ophthalmology for further tests. Screening aims to detect sight-threatening retinopathy before any sight-loss occurs as treatment is more successful if given at this stage.

The risk of progression of retinopathy is reduced by keeping good control of blood glucose, blood pressure and lipids. There is good information here http://www.diabeticretinopathy.org.uk/Information_for_patients.html

ConorD29 · Jun 5, 2017

noblehead said:
Sorry for the late reply, a busy weekend.

A explanation of Proliferative Retinopathy:

http://www.diabeticretinopathy.org.uk/proliferative.html

Do navigate around the above website, it really does have some useful info and advice.

I've been problem-free for the last 12 years after treatment, I still attend the Ophthalmology Clinic for regular check-ups.

I have type 1 and have lived with the condition for 35 years, try not to stress about the condition @ConorD29 and heed the advice on keeping bg, bp and cholesterol levels in check. Good luck.

tigger said:
Hi have you been diagnosed with background? I have had this a few times on the scans but when actually seen by a dr (as opposed to a dr or technician reading a scan) they've given all sorts of reasons as to why this was not accurate. I am very grateful after 34 years that this is the case but went through a lot of stress when this happened through not knowing what this meant and being handed literature produced by the royal national societyfor the blind!

My advice if you have just received a letter following a scan saying this is the case is to ensure you get them to book you an appointment with an opthomologist to investigate further (this should be done anyway but may take some time). It never hurts to tighten control but be careful if making very quick changes as sudden large drops in hba1c can worsen retinopathy so discuss it with your consultant.

Good luck and wishing you all the best with this

Hi

tigger said:
Hi have you been diagnosed with background? I have had this a few times on the scans but when actually seen by a dr (as opposed to a dr or technician reading a scan) they've given all sorts of reasons as to why this was not accurate. I am very grateful after 34 years that this is the case but went through a lot of stress when this happened through not knowing what this meant and being handed literature produced by the royal national societyfor the blind!

My advice if you have just received a letter following a scan saying this is the case is to ensure you get them to book you an appointment with an opthomologist to investigate further (this should be done anyway but may take some time). It never hurts to tighten control but be careful if making very quick changes as sudden large drops in hba1c can worsen retinopathy so discuss it with your consultant.

Good luck and wishing you all the best with this

thanks for the reply, the letter I received didn't give too much detail about anything it just said I've got retinopathy with only small changes to blood vessels at the back of my eyes. The letter didn't say which eye or both eye and that treatment wasn't need at this stage to come back in 12 months.
I hope your keeping well and I shall fight this tooth and nail to prevent it getting any worse.

ConorD29 · Jun 5, 2017

Dark Horse said:
After 20 years of diabetes, nearly all people with type 1 have some level of retinopathy. Background retinopathy does not affect eyesight and does not need treatment. For a lot of people, the retinopathy never progresses beyond background. If any changes are spotted at screening that suggest sight-threatening retinopathy is developing the patient will be referred to ophthalmology for further tests. Screening aims to detect sight-threatening retinopathy before any sight-loss occurs as treatment is more successful if given at this stage.

The risk of progression of retinopathy is reduced by keeping good control of blood glucose, blood pressure and lipids. There is good information here http://www.diabeticretinopathy.org.uk/Information_for_patients.html

Thanks for the reply, my blood pressure and everything else is all in good order thankfully.
My problem was that I was eating takeaway late on a Saturday night then waking up on Sunday mornings with a high bg. I'd obviously been high all night just that once every other week, so I've knocked my take away on the head late on a Saturday night, and now will only eat a takeaway at dinner time on a Saturday as I will be awake and able to take insulin accordingly.
I was under the impression that "hey it's only once every other week I'm getting an all night high" and thought that it wouldn't really affect me.
Clearly I've made a bad judgement and I've rectifyed it right away. I shall keep everyone updated as the time goes on

Dillinger · Jun 5, 2017

ConorD29 said:
Can retinopathy be reversed with good control? What are other people's experiences of this?

Hi Conor, for retinopathy there is a scale of severity from NSC R0 meaning no retinopathy and a normal retina whilst NSC R3 is the most serious (I think in Scotland they have a slightly different grading system with NSC R4 as the worst).

I've been Type 1 for almost 40 years and for about half of that had NSC R1 so signs of non-proliferative diabetic retinopathy. This had no impact on my sight and was monitored.

In the last few years on a low-carb diet my retinopathy has reversed; at my last 2 eye screenings I have had NSC R0 - so there is no sign of it. It can be done!

It took me a long time to get rid of it but it is possible.

Best

Dillinger

noblehead · Jun 5, 2017

ConorD29 said:
Hi

thanks for the reply, the letter I received didn't give too much detail about anything it just said I've got retinopathy with only small changes to blood vessels at the back of my eyes. The letter didn't say which eye or both eye and that treatment wasn't need at this stage to come back in 12 months.
I hope your keeping well and I shall fight this tooth and nail to prevent it getting any worse.

Thanks for the good wishes @ConorD29

Good news that no treatment is needed, but rest assured they'll monitor your eyes closely from hereon so your in good hands. As said try and keep on top of your bg,bp and cholesterol levels and be make sure to include plenty of fruit & veg in your diet.

Wishing all is well in 12 months time, if you can keep the thread updated on your progress.

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