Newbie that needs advice

[Hannah76]

Hi, Ive been type 1 diabetic for 30 years now! Was told yesterday at the eye clinic that I have prolifertive (not spelt right) retinopathy. I will be starting laser treatment for this soon but I'm so scared. Any advice or tips to get through it? also i was told that if it doesn't work then the injections is the next step which means yet another life long commitment of having these 3-4 times a year. Has anyone had these done and does it hurt? I'm getting alot of headaches and forgot to ask the consultant if this is due to the eyesight, would anyone know, or would it just be stress related. Sorry for so many questions. From a terrified type 1

 

[novorapidboi26]

Hi,

I have some eye issues myself but have yet to require any invasive treatment.

Losing sight for me is the scariest thing I can think of and so any treatment at very early stages to prevent sight loss would be welcome.....so if you could try and look at it from that angle it might seem a little less scary....

I think laser and injections are very effective treatments alongside a continued effort to keep tighter control.....even at proliferative stage it can get better......so try not to worry.....

 

[Flower]

Hello Hannah76 and welcome 🙂

I'm sorry you are facing proliferative retinopathy and are feeling so terrified. It is a very frightening thing to be told but the treatment is effective and improving all the time.

From my experience I know the thought of laser is terrifying but imagining what will happen in your mind is a lot more frightening than the reality of the treatment. Try not to overthink it all, take it one step at a time, deal with the first laser session and see what the outcome of that is.

Your eye/eyes will be dilated in the normal way and then numbing drops are put into your eye. You sit at a slit lamp table with your eye held open by a contact lens and the ophthalmologist targets the laser on the areas of the retina where abnormal blood vessels are growing. You see a lot of bright red flashes in quick succession as the laser is aimed at the specific areas. I found it uncomfortable rather than painful

Don't be surprised if you need more than one laser session as there is a limit to the number of burns they can put on at any session. After the dilation drops have worn off your eyes will be light sensitive and prickly for a while but it does settle down- definitely have sunglasses with you. It is an effective way to preserve the healthy parts of your retina and as it is mainly in the peripheral vision you probably won't notice any difference in your sight to start with unless you need numerous sessions.

This site has a lot of good information on proliferative retinopathy, laser and injections. http://www.diabeticretinopathy.org.uk/laserdiabetic_retinopathy.html

The injections weren't available 20 yeas back when I had proliferative retinopathy but I know they are an excellent effective treatment. I've had injections in my eyes for other reasons and like the thought of laser in reality it is all done very quickly and you can't feel much.

For me proliferative retinopathy didn't cause me headaches, I didn't know I had it until it was very advanced but do speak to your clinic about it.

I wish you well, the whole thing is a big shock and very frightening but there is good treatment and you're in a clinic with people ready to help you . Take it one step at a time and if you need to tighten your control then speak to your diabetes team as a rapid tightening of control can perversely increase the progression of proliferative retinopathy - which is the last thing anyone needs.

Please let us know if you have other questions as there are others on here who have had injections more recently and can tell you what happens. This forum has a wealth of experience and is very supportive so please let us know how things go. Best Wishes.

 

[Hannah76]

Hi,

I have some eye issues myself but have yet to require any invasive treatment.

Losing sight for me is the scariest thing I can think of and so any treatment at very early stages to prevent sight loss would be welcome.....so if you could try and look at it from that angle it might seem a little less scary....

I think laser and injections are very effective treatments alongside a continued effort to keep tighter control.....even at proliferative stage it can get better......so try not to worry.....

Thank you for your response. I know its a good thing that they have found it but it just scares the living daylights out of me. Better control is something i really need to work on. Thanks again for your support

 

[Hannah76]

Hello Hannah76 and welcome 🙂

I'm sorry you are facing proliferative retinopathy and are feeling so terrified. It is a very frightening thing to be told but the treatment is effective and improving all the time.

From my experience I know the thought of laser is terrifying but imagining what will happen in your mind is a lot more frightening than the reality of the treatment. Try not to overthink it all, take it one step at a time, deal with the first laser session and see what the outcome of that is.

Your eye/eyes will be dilated in the normal way and then numbing drops are put into your eye. You sit at a slit lamp table with your eye held open by a contact lens and the ophthalmologist targets the laser on the areas of the retina where abnormal blood vessels are growing. You see a lot of bright red flashes in quick succession as the laser is aimed at the specific areas. I found it uncomfortable rather than painful

Don't be surprised if you need more than one laser session as there is a limit to the number of burns they can put on at any session. After the dilation drops have worn off your eyes will be light sensitive and prickly for a while but it does settle down- definitely have sunglasses with you. It is an effective way to preserve the healthy parts of your retina and as it is mainly in the peripheral vision you probably won't notice any difference in your sight to start with unless you need numerous sessions.

This site has a lot of good information on proliferative retinopathy, laser and injections. http://www.diabeticretinopathy.org.uk/laserdiabetic_retinopathy.html

The injections weren't available 20 yeas back when I had proliferative retinopathy but I know they are an excellent effective treatment. I've had injections in my eyes for other reasons and like the thought of laser in reality it is all done very quickly and you can't feel much.

For me proliferative retinopathy didn't cause me headaches, I didn't know I had it until it was very advanced but do speak to your clinic about it.

I wish you well, the whole thing is a big shock and very frightening but there is good treatment and you're in a clinic with people ready to help you . Take it one step at a time and if you need to tighten your control then speak to your diabetes team as a rapid tightening of control can perversely increase the progression of proliferative retinopathy - which is the last thing anyone needs.

Please let us know if you have other questions as there are others on here who have had injections more recently and can tell you what happens. This forum has a wealth of experience and is very supportive so please let us know how things go. Best Wishes.

Thank you so much for your response. That puts my mind at rest a bit. I was told that i would most likely need 2 sessions and if that didnt work then I would need to think about the injections. The consultant said that they don't want to damage my proliferal vision as this would then mean I wouldn't be able to drive (this really scared me). I really need to get better control of my diabetes, I think ive been neglecting it and now its catching up with me. Thanks again for the response, I really appreciate it.

 

[SB2015]

Thank you so much for your response. That puts my mind at rest a bit. I was told that i would most likely need 2 sessions and if that didnt work then I would need to think about the injections. The consultant said that they don't want to damage my proliferal vision as this would then mean I wouldn't be able to drive (this really scared me). I really need to get better control of my diabetes, I think ive been neglecting it and now its catching up with me. Thanks again for the response, I really appreciate it.

Is there anything we can do to help you get better control?

 

[Hannah76]

Hi, I went an saw my diabetic nurse this morning (luckily I had an appointment already booked), she is going to refer me to the specialist team to help me. My HBa1C is currently at 10 (in old money) about 78 i think in new terms, so I really need to work on this. my feet are fine, my blood pressure is perfect, all other bloods were good apart from my salt level is a bit low, but i did have sugar in my urine. I really need to work out my ratio of insulin:carbs so think i need to carb count alot better than I am. She also suggested using brown rice, pasta, bread etc, which i will do. Any other suggestions would be greatfully appreciated. Thank you for taking the time to reply

 

[trophywench]

Well glucose doesn't spill over into pee until BG is over 11 for some time so clearly yours had been before you wee'd that sample.

Have you actually been on a formal carb counting/dose adjustment course, do you have rules for your correction rates that you use when you run in double figures and, have you ever done any basal testing? All these things can help you reduce your BGs generally and hence your A1c.

Incidentally when I've had procedures (cataract removals) where anaesthetic into the eye has been necessary, they've always lobbed the numbing drops in before the dilation drops, which is brill cos I'm not screwing my face up anticipating the pain and I swear the eyes dilate quicker and better cos the drops circulate easier.

When you say 'specialist team' how to you mean, do you not normally see a specialist team, or have you been consigned to your GP?

 

[SB2015]

Hi, I went an saw my diabetic nurse this morning (luckily I had an appointment already booked), she is going to refer me to the specialist team to help me. My HBa1C is currently at 10 (in old money) about 78 i think in new terms, so I really need to work on this. my feet are fine, my blood pressure is perfect, all other bloods were good apart from my salt level is a bit low, but i did have sugar in my urine. I really need to work out my ratio of insulin:carbs so think i need to carb count alot better than I am. She also suggested using brown rice, pasta, bread etc, which i will do. Any other suggestions would be greatfully appreciated. Thank you for taking the time to reply

Lots of positives there Hannah. Well done and I am glad that you have a referral. to the specialist team now

My salt level has been a bit low throughout the years of checks, and my GP is happy that it is normal for me. Keep getting all your checks each yer and they will monitor this.

One thought on sorting out your carb insulin/ratios, it is important to check your basal insulin first. If this is not matched to your needs, then the sensitivity ratio and carb ratio will be difficult to sort out as the boluses will be muddled up with corrections. There’s is a link to basal rate testing in the pumping section of this forum but the ideas still apply to Multiple Daily Injections.

Keep in touch and let us know how the eyes go and your DSN appointment.

 

[Hannah76]

Well glucose doesn't spill over into pee until BG is over 11 for some time so clearly yours had been before you wee'd that sample.

Have you actually been on a formal carb counting/dose adjustment course, do you have rules for your correction rates that you use when you run in double figures and, have you ever done any basal testing? All these things can help you reduce your BGs generally and hence your A1c.

Incidentally when I've had procedures (cataract removals) where anaesthetic into the eye has been necessary, they've always lobbed the numbing drops in before the dilation drops, which is brill cos I'm not screwing my face up anticipating the pain and I swear the eyes dilate quicker and better cos the drops circulate easier.

When you say 'specialist team' how to you mean, do you not normally see a specialist team, or have you been consigned to your GP?

I have been on two carb counting courses but as I say, I think i have become very lazy. Think I might need a gentle reminder as to what a 'Basal' test is? Fingers crossed they numb me first.

I currently see my GP diabetic nurse but there is also a specialist team in the local area which I know will help me out.

 

[Hannah76]

Lots of positives there Hannah. Well done and I am glad that you have a referral. to the specialist team now

My salt level has been a bit low throughout the years of checks, and my GP is happy that it is normal for me. Keep getting all your checks each yer and they will monitor this.

One thought on sorting out your carb insulin/ratios, it is important to check your basal insulin first. If this is not matched to your needs, then the sensitivity ratio and carb ratio will be difficult to sort out as the boluses will be muddled up with corrections. There’s is a link to basal rate testing in the pumping section of this forum but the ideas still apply to Multiple Daily Injections.

Keep in touch and let us know how the eyes go and your DSN appointment.

She did tell me not to worry about the salt as it wasn't that low, just told me to add more salt to my diet! I have heard of Basal (i know it was taught to me on the courses) but cant for the life of me remember what it is or how I go about checking it. I will take a look at the link. Thank you. I will keep in touch with you. And thanks again for replying.

 

[Flower]

They dilate your eyes in the normal way numbing drops/dilation drops, then I had more drops put in when I was called into the laser room before the contact lens is put to hold your eye open for laser. They do all they can to make it a smooth process.

 

[Hannah76]

They dilate your eyes in the normal way numbing drops/dilation drops, then I had more drops put in when I was called into the laser room before the contact lens is put to hold your eye open for laser. They do all they can to make it a smooth process.

Thank you flower. Much appreciated. I'm feeling alot better about it now. Think I just needed to get my head round it a bit

 

[Hannah76]

So, I thought I would report back to you now that I have had my first bit of laser treatment. I really don't know what I was worrying about! I had loads of drops in to numb my eye (left eye only at the moment, as my right one is ok), I had 1000 lasers which I think is the maximum they can do in one session. It didn't hurt, was just a little uncomfortable (i've been through worse). The consultant I saw was much more positive than the first one and told me there was no reason that laser shouldn't work as it has a success rate of about 99%, so no need to panic about losing my licence which is what the first one told me. I'm feeling very positive about it. I had it done a week ago, my right eye goes a little blurry sometimes and occasionally i see little flashes (which i guess is where it was lasered. I've got to go for 1-2 more sessions and then they may think about doing something with my right eye as a preventative. Thank you to all of you who responded, you made me feel a lot better about going for it xx

 

[Northerner]

So, I thought I would report back to you now that I have had my first bit of laser treatment. I really don't know what I was worrying about! I had loads of drops in to numb my eye (left eye only at the moment, as my right one is ok), I had 1000 lasers which I think is the maximum they can do in one session. It didn't hurt, was just a little uncomfortable (i've been through worse). The consultant I saw was much more positive than the first one and told me there was no reason that laser shouldn't work as it has a success rate of about 99%, so no need to panic about losing my licence which is what the first one told me. I'm feeling very positive about it. I had it done a week ago, my right eye goes a little blurry sometimes and occasionally i see little flashes (which i guess is where it was lasered. I've got to go for 1-2 more sessions and then they may think about doing something with my right eye as a preventative. Thank you to all of you who responded, you made me feel a lot better about going for it xx

Glad to hear things went well Hannah 🙂 I hope that the future treatment goes smoothly too 🙂