Eye Screening results

[Sophie1991]

Hi all. I'm new to this site so please bear with me

I'm Sophie & have had T1D for 16 years in November.

Diagnosed at 10 years old I've had my highs and lows (literally) & have finally got my HBA1C down to 60%, which isn't ideal but it's better than it was!

I have always had the all clear from retinal eye screenings (albeit the usual changes on the odd occasion) but this time around I had my results it shows Diabetic Maculopathy and I am SO scared!!

Has anyone else had these results from their eye screening tests and if so - is it reversible ? Any advice would be greatly appreciated. I am only 25, not overweight and try my best to keep blood sugars at bay (except whilst I'm asleep when they seem to peak which reeeeally annoys me!)

I want to start a family in the next 5 years and now have this huge fear that I'm going to lose my site.

Looking forward to hearing from you all. Thanks for reading xx

 

[catapillar]

Diagnosed at 10 years old I've had my highs and lows (literally) & have finally got my HBA1C down to 60%, which isn't ideal but it's better than it was!

Um, can you clarify what units you are using for hba1c? A hba1c of 60% using DCCT units is astoundingly high - the target is 6.5% for comparison of how high 60% would be. Do you mean 6% and it's a typo?

Or, are you referring to the new IFCC hba1c units in mmol/mol? If so, your hba1c would be 60, with no %.

Have you done any basal testing to address overnight highs?

In reference to diabetic maculopathy, you might find this thread has some good info - http://www.diabetes.co.uk/forum/threads/signs-of-diabetic-maculopathy.103649/

 

[himtoo]

Hi @Sophie1991
welcome to the forum !!

the choices available for eye issues are loads better than 10-15 years ago.

I have had some injections for maculopathy which have helped slow / stop the progress.
you should definitely speak with your consultant to review options.

and ........ try not to worry ( hard I Know )
x

 

[Freema]

welcome here Sophie1991

I´ll tag @daisy so you´ll get the valuable information everyone in here gets

 

[Dark Horse]

Not all diabetic maculopathy detected during screening is 'clinically significant' - further tests are needed to determine this. It may be that follow-up tests find nothing that needs treatment. If clinically significant changes are found, there are effective treatments available. In the meantime, it is a good idea to focus on good control of diabetes and blood pressure.

 

[Sophie1991]

Um, can you clarify what units you are using for hba1c? A hba1c of 60% using DCCT units is astoundingly high - the target is 6.5% for comparison of how high 60% would be. Do you mean 6% and it's a typo?

Or, are you referring to the new IFCC hba1c units in mmol/mol? If so, your hba1c would be 60, with no %.

Have you done any basal testing to address overnight highs?

In reference to diabetic maculopathy, you might find this thread has some good info - http://www.diabetes.co.uk/forum/threads/signs-of-diabetic-maculopathy.103649/

Apologies, I meant 60 without the percent! It confuses me still. I inject 14u levemir before bed and 18u in the morning, tested before bed I was 14. Correction dosed for that..... tested again at 4am and was 10. So corrected for that. Woke up at 17..... it seems I'm just high whilst asleep which I have no control over! Agh!!!

 

[Sophie1991]

Not all diabetic maculopathy detected during screening is 'clinically significant' - further tests are needed to determine this. It may be that follow-up tests find nothing that needs treatment. If clinically significant changes are found, there are effective treatments available. In the meantime, it is a good idea to focus on good control of diabetes and blood pressure.

Thank you, I'm just naturally worrying as I have had a headache behind my eyes for a week now. Hoping I won't need any treatment

 

[Sophie1991]

welcome here Sophie1991

I´ll tag @daisy so you´ll get the valuable information everyone in here gets

Thank you

 

[Sophie1991]

Hi @Sophie1991
welcome to the forum !!

the choices available for eye issues are loads better than 10-15 years ago.

I have had some injections for maculopathy which have helped slow / stop the progress.
you should definitely speak with your consultant to review options.

and ........ try not to worry ( hard I Know )
x

Hi thank you

How long had you had diabetes when you had the injections??? I have pain behind my left Eye which I presume is part and parcel of it

 

[himtoo]

Hi thank you

How long had you had diabetes when you had the injections??? I have pain behind my left Eye which I presume is part and parcel of it

I had been diabetic for 40 years when I had the injections
I have had laser treatment previous to that too


have they followed up the letter informing you of the maculopathy with a letter for an appointment.

if not -- I would ring your ophthalmology department at hospital tomorrow and explain that you are worried, are experiencing some pain behind your left eye, and can anybody at least return a call to you to give you more information.

 

[catapillar]

Apologies, I meant 60 without the percent! It confuses me still. I inject 14u levemir before bed and 18u in the morning, tested before bed I was 14. Correction dosed for that..... tested again at 4am and was 10. So corrected for that. Woke up at 17..... it seems I'm just high whilst asleep which I have no control over! Agh!!!

It's frustrating, but I don't think you have no control over it. I'm sure you can take control - don't let it make you think otherwise.

First step would be to basal test to see if 14 units of levemir is enough for you. This is a guide on how to basal test - https://mysugr.com/basal-rate-testing/

It might be that 14u isn't enough and an increase will stop the rise overnight. Do the testing before increasing. It might be that you're experiencing dawn phenomenon (the basal testing will show you whether that's the case or not) which might be tackled with an increase and a move in the timing of your basal dose but you might find a basal dose high enough to deal with DP just causes nocturnal hypos before the DP kicks in, or a bolus to correct at the point your dawn phenomenon kicks in. Of course if you're left with having to bolus at 4am every morning then you meet the ABCD criteria for a pump where your basal rates can be set to deal with dawn phenomenon.

 

[Dark Horse]

Hi thank you

How long had you had diabetes when you had the injections??? I have pain behind my left Eye which I presume is part and parcel of it

Pain is not a symptom of diabetic maculopathy. Common causes of pain behind the eye are migraine, sinus infection and cluster headaches. If the pain persists or worsens, see your GP.

 

[SugarBuzz]

Hi all. I'm new to this site so please bear with me

I'm Sophie & have had T1D for 16 years in November.

Diagnosed at 10 years old I've had my highs and lows (literally) & have finally got my HBA1C down to 60%, which isn't ideal but it's better than it was!

I have always had the all clear from retinal eye screenings (albeit the usual changes on the odd occasion) but this time around I had my results it shows Diabetic Maculopathy and I am SO scared!!

Hi. Did you receive a 'diagnosis' by letter?

I ask as I had the 'minor changes in your eyes' letter for several years running. Every time I go for an eye screening I'm always half expecting that they will discover problems especially after 24 years of mostly uncontrolled blood sugar levels.

 

[Sophie1991]

I had been diabetic for 40 years when I had the injections
I have had laser treatment previous to that too


have they followed up the letter informing you of the maculopathy with a letter for an appointment.

if not -- I would ring your ophthalmology department at hospital tomorrow and explain that you are worried, are experiencing some pain behind your left eye, and can anybody at least return a call to you to give you more information.

Thanks for your response yes they have told me to contact the eye hospital for further tests so they can assess what stage the Maculopathy is at. I'm hoping and praying it's reversible or manageable! I've only been Diabetic 17 years which doesn't seem an awful long time to experience these problems?

How did you find the treatment on your eyes? Does it affect your ability to drive? & do you still lead a normal life with regards your eyesight? Thanks x

 

[Sophie1991]

Hi. Did you receive a 'diagnosis' by letter?

I ask as I had the 'minor changes in your eyes' letter for several years running. Every time I go for an eye screening I'm always half expecting that they will discover problems especially after 24 years of mostly uncontrolled blood sugar levels.

Hi, yes I received the letter stating that I have Maculopathy behind my eyes. I have had the usual background retinopathy letter for around 10 years but then it has often reversed for a couple of years in between. My diabetes is quite well controlled so I don't really understand why after just 17 years I am experiencing this! Xx

 

[Sophie1991]

Thanks for your response, that has reassured me A LOT x

Pain is not a symptom of diabetic maculopathy. Common causes of pain behind the eye are migraine, sinus infection and cluster headaches. If the pain persists or worsens, see your GP.

anks

 

[Sophie1991]

It's frustrating, but I don't think you have no control over it. I'm sure you can take control - don't let it make you think otherwise.

First step would be to basal test to see if 14 units of levemir is enough for you. This is a guide on how to basal test - https://mysugr.com/basal-rate-testing/

It might be that 14u isn't enough and an increase will stop the rise overnight. Do the testing before increasing. It might be that you're experiencing dawn phenomenon (the basal testing will show you whether that's the case or not) which might be tackled with an increase and a move in the timing of your basal dose but you might find a basal dose high enough to deal with DP just causes nocturnal hypos before the DP kicks in, or a bolus to correct at the point your dawn phenomenon kicks in. Of course if you're left with having to bolus at 4am every morning then you meet the ABCD criteria for a pump where your basal rates can be set to deal with dawn phenomenon.

Thank you, i will check that now! I am on the waiting list for a dafne course in November so would have to wait until Christmas for a pump but I think that would be the best option for me right now. Bit nervous about changing across as I am used to injections and it's all I have ever known but have heard plenty of success stories about the pump! Xx

 

[DiabeticDadUK]

Hi all. I'm new to this site so please bear with me

I'm Sophie & have had T1D for 16 years in November.

Diagnosed at 10 years old I've had my highs and lows (literally) & have finally got my HBA1C down to 60%, which isn't ideal but it's better than it was!

I have always had the all clear from retinal eye screenings (albeit the usual changes on the odd occasion) but this time around I had my results it shows Diabetic Maculopathy and I am SO scared!!

Has anyone else had these results from their eye screening tests and if so - is it reversible ? Any advice would be greatly appreciated. I am only 25, not overweight and try my best to keep blood sugars at bay (except whilst I'm asleep when they seem to peak which reeeeally annoys me!)

I want to start a family in the next 5 years and now have this huge fear that I'm going to lose my site.

Looking forward to hearing from you all. Thanks for reading xx

Hi there. Try not to worry too much at this stage. Eye treatments are as good as they've ever been. I know how concerning it can be to think about complications with your eyes. I've had plenty of issues and I'm not blind.

If you're suffering with pain and it's not going away then see your GP or go to your emergency eye dept if your hospital has one. If you have a pressure issue in the eye that can cause a lot of pain, almost to an intolerable level if the pressure is out of control. I guess it's not that unless you have a high pain threshold.

Good luck

 

[himtoo]

Thanks for your response yes they have told me to contact the eye hospital for further tests so they can assess what stage the Maculopathy is at. I'm hoping and praying it's reversible or manageable! I've only been Diabetic 17 years which doesn't seem an awful long time to experience these problems?

How did you find the treatment on your eyes? Does it affect your ability to drive? & do you still lead a normal life with regards your eyesight? Thanks x

Hi there @Sophie1991
I will start by stating that I am probably a big wimp but I have not enjoyed the treatment -- ( I hate having the stinging drops put in to begin with at every appointment -- LOL )
I know others on the forum have stated treatment is not bad , but I think I hate having anything near my eyes so I sorta freak out mentally ( if that makes sense )

some much better news now ............ I am still driving as my right eye is totally spot on with 20/20 eyesight. my left I can see out of fine but cannot really see things ultra sharp -- my maculopathy has taken the shape of a tiny "bubble" right next to my central vision which cannot be lasered due to it's position.

and yes -- although my eyesight is not totally perfect I still do everything and live normally -- I go to ophthalmology at hospital 2 times per year --and for the last few years the maculopathy has decreased in thickness from about 370 microns to around 320 microns -- ( I have been wearing the Noctura 400 sleep mask for a big part of the last few years )

 

[slip]

I inject 14u levemir before bed and 18u in the morning, tested before bed I was 14. Correction dosed for that..... tested again at 4am and was 10. So corrected for that. Woke up at 17..... it seems I'm just high whilst asleep which I have no control over!

Just wonder if that 17 was a rebound to a hypo?

It may be worth looking at getting a Free Style Libre, you'll know what your BS does overnight then - and makes basal testing so much easier.