Retinopathy

[Willow]

I went to the opticians on saturday & she said I am just past Grade1 & has referred me to the hospital. I am very worried about this & I feel I am to blame as my diabetes has been uncontrolled for far too long. I am back to regularly resting my blood sugar but they are very unstable (high, low or good) & I feel hungry a lot as 40 grams of carbs a meal isn't very much - or is it? How many carb are you on per day?

Has anybody got any advise plse?

Thank you.

[Deager]

Willow,

So very sorry to hear about your eyes. My husband was uncontrolled for many years before I met him and by the time he was 30 he had to have laser eye surgery for retinopathy. We know it is hard to do everything right, especially if you are diagnosed young (Jack was 16) and you want to be like everyone else. But denial comes back and bites you as Jack has found out.

It is never too late to start doing it right tho.

You should ask your doctor about getting a pump. It will help you get your BG back to manageable levels. To me, the pump is a miracle. It has turned my husband's life around.

Next, carbs are carbs are carbs.....NOT. As far as how many you should have in your diet, it would benefit you greatly to see a certified diabetic educator. He/she can point you in the right direction as far as carbs, fats, protein...all those wonderful things.

Also, I'd recommend reading about the Glycemic Index because there are different kinds of carbs and they have a huge effect on a diabetic. Eating the right foods should keep you from being hungry all the time and help you keep control of your diabetes at the same time.

I know this is devastating for you, but you can look at it as a wake up call. Medical science has come a long way in treating retinopathy and there are things you can do (diet, exercise, bg control, etc.) to help keep it from getting worse.

Good luck Willow. Please keep us posted! We are all here to help, advise, console and support......and just listen if you need to yell.

Diane

[HeatherP]

Diane's right, you should work with a CDE - or over there I think they're called a Diabetes Nurse.

The important thing is that you're doing the right thing now. We all slip up sometimes and there's no going back. The only thing you can do is try to do better in the future. Now that you're taking better care of yourself the retinopathy may slow down and/or your symptoms may ease up a bit. I sure hope so.

Take care of yourself,
HeatherP

[Belinda]

Sorry to hear about your retinopathy...I had it and it snuck up on me too. The doc had little hope that I could ever see very well again....WRONG...my vision is better than ever and even before the 2 years of surgeries and healing. I give credit to the wonderful doctors and my stubborness of doing exactly what I was suppose to do with eye drops etc. I have had diabetes for many years (28) and things just sometimes go wrong. I have a pump, exercise and eat relatively healthy on most days. Do what you have to for your vision but don't let anyone tell you that you may never see well again...prove them wrong by doing all that you have to and can
GOOD LUCK...(from someone who has been there)

[Lorna]

Hi, hope this doesn't sound insensitive, but did you find out you had it in a random eye test or did you know something was worng before that? If so how? Im really saced that I have it as well. (Too scared to put the appointment on to get it checked!!!)

[Belinda]

Randomly....I wanted new glasses before my next appointment in 3 months. Trust me just make the appointment it will be well worth it.

[Lorna]

So did your vision derteriorate further after that? (Sorry if that is too nosy)

[Lorna]

Also, are you allowed to drive after you develop it if you can still read a licence plate at 20 meters?

[Willow]

Hi Lorna

I went to the opticians last Saturday & when she shone the light into my eyes she said she could see particles & that it is just past grade 1 (there are 4 stages) retinopathy. She is referring me to the hospital where they will put drops in my eyes so they can see the very back of my eyes & also take pictures.

You do need to go see an optician Lorna because apparently with this you may not get any obvious symptoms. Diabetics should have an eye test every year, although I hadn't been in years. The optician may put the drops in your eyes at the appt but mine didn't as she said the hospital would do this also.

I can fully understand how worrying this is. I am trying to get my bs good because this can prevent it from worsening. But I am finding it hard & am having bad cravings.

When I get my appt at the hospital I will post again to let you know how it went.

Best wishes.

[Willow]

By the way Lorna have a look on NetDoctor & NHS website for info about it.

:)

[Lorna]

Thanks, and good luck!!!

[SunniD]

45 gms. of carb is what is recommended /meal by the dieticians.
You can make it into a lot of food or not depending on what you're eating. It seems plenty for me. Try eating more GI low level foods and /or seeing an CDE. After awhile the cravings will lessen and you'll be fine.

Willow, your doc has sent you for the best treatment possible and I know it's very scary but it will help you the most to save your vision. In fact, there are far fewer diabetics who have lost
their vision now than before laser came into use. Where I work, the nurses said they can't remember the last time they saw a
blind diabetic so that's excellent. We've progressed a lot in medicine to helping retinopathies so hang in there.

Kindest Regards Willow and wishing you all the best,
SunniD

[Belinda]

Lorna sorry it took me so long to reply. My vision deteriorated after surgery until my eyes got stronger. I now have very good vision considering all the stuff that happened. I had vision in only one eye for a time and then when it got strong had the other eye done and then was one eyed again. I did drive but not at night for a long time about 2 years. But know I am good to go and hopefully your recovery won't be as long. Good luck

[Willow]

Dear SunniD

Thank you for your reply, your words are reassuring. I really appreciate the support you & other members have given me.

I have the letter from the opticians to give to my doctor in the morning to refer me to the hospital, it say "requires ophthamological assessment for diabetic retinopathy". I am just thankful that I went to the opticians sooner rather than later.

I am still up & down with my bs (but they are getting better) & I will discuss this & insulin with my doctor.

Thanks again!

.

[Lorna]

OK finally getting round to makign the appointment, still praying for it not to be though, will keep you posted. Lorna

[Willow]

Well done Lorna, let us know how you get on.

[rzrbks]

Taking the first stap is always the hardest, Lorna--you've done that--now make sure to keep folloiwing what the Drs. say and it will become a good habit, evetually and......


You know what? A good habit is just as hard to break as a bad one is.

[Lorna]

I feel kind of cheeted on that one cos my diabetes has always been fairly well under control- obviously with occasional blunders can only wait and see!

[Deager]

Willow,

This answer may come a little to late....but you asked about driving. Jack has had 13 laser eye surgeries and if it were just the laser he could have driven right afterword. However, they dialate your eyes and that is what keeps you from driving. It is painful when daylight hits your eyes and you need to wear sunglasses afterword. I know they have drops they can put in after to help un-dialate your eyes, but they don't work very well for Jack. Perhaps you will have better luck.

Diane

[jared]

Hello everyone. Just want to let you know I was just recently sent to the hospital to get my eyes checked and they did a fluorine test (inject dye in the arm and take pictures of the back of the eye) it wasn’t painful it was just scary when they tell you that you may feel nauseous from the dye and maybe a little burning sensation when they inject the dye. I felt nothing and the pictures said I am leaking fatty tissue. LAZER surgery time. WILLOW LET ME KNOW HOW THE eye surgery goes. Im terrified of getting shots in the eye...

[dpav]

Sorry I took so long to respond to this one. I have had quite a bit of experience in this area. I had the dye in my arm like Jared. Unfortunately I had a bit of nausea, It went away fast and the pictures were taken.
I have had one eye fully vitrectomised as well. Also both have been lased. The healing takes a little while and the results can be quite good. The disease can also become neutral. Like mine there has been no sign of further development of retinopathy. I have had a post terior chryo treatment as well. That is old style stuff and is probably not done any more.
My eyes are good enough for me to drive without requiring glasses. As to right after the surgeries with laser. I strongly do NOT recommend this. There is too much that can go wrong while driving. It is best if you can get a ride.
There are many more details I have but I think this might be helpful
Don

[Willow]

Hi Deager - I think it was Lorna who asked about driving...I can't drive! I am hoping ot start learning once I have good control of my diabetes back. Good tip about the sunglasses I'll make sure I take mine with me.

Jared - not been to the hospital yet to have the drops put in etc, waiting for my appt to come through. Hope I don't need surgery. My doctor said yesterday that he isn't suprised I have grade 1 retinopathy as most diabetics get it. I did get some info on lazor eye surgery off our UK health website & it said that it may feel uncomfortable but it doesn't hurt. Hope it goes well Jared. Keep us posted.

dpav - I am glad to hear your surgery was a success. Thank you for sharing, it is good to know what to expect.

[Lorna]

Yea was me who asked about driving, not bothered about straight after the drops, but I am really bothered about keeping my licence in the long term, cos I am about to move to the middle of nowhere with no public transport, so will need to drive to work.

Whats the test with the dye? Is it the same as the eye drops? I have never heard of that.

Thanks for your support everyone.

[dpav]

The dye is injected into the vein and it will travel through the eye area fairly fast. So after the injection you will have a lens on your eye that will allow the photographer to shoot pictures of your retina and the sides as well. It is all done fairly quickly. I got little nauseated because of the fast flashing of the light in my eye for the pictures. I got over it in time to have the balance taken. The photos need to be taken in a short period of time because the dye only last a short time. I believe it was 10 minutes. Most people have little to no problems with this procedure.

Also most who have laser work done have little problem with driving. It normally does not take away any sight of any kind. It simply destroys the newly developing veins, and stops them from potentially bleeding. It is a little uncomfortable but it is not a major problem. It is more psychological with all of the preparation, and the procedure. Use all of the drops and creams they recommend and most have no problems.
Don

[Deager]

I agree with dpav. There is no problem with driving. I sat thru many many laser surgeries with Jack and he had no problem driving the next day whereas if he hadn't had it done he would definitely have a problem....he'd be blind.

Also, I might mention that Jack had the same Florisein test that dpav mentions not 2 weeks ago and it showed no new abnormal growth of vessels.....and Jack had his laser stuff done 20 YEARS AGO! So see, there is a definite good side to having it done and taking care of yourself....:)!

Diane

[Lorna]

Going for the appointment tomorrow, got the sunglasses ready, just a case of wait andsee now!

[Willow]

That's good news Lorna. I'm waiting for my referal appt to come through from the hosiptal.

Good luck & let us know how you get on.

[Deager]

Lorna,

How did it go? You ok?

Diane

[Lorna]

Hiya! Thanks for your concern and encouraging me to make the appointment in the first place. I put some more details about it in the other post (confused/ worried/ relieved all in one). Basically I am, but I am not.

The opthalmist said that I have really good distance vision, but that I have a tiny microbia (I think that was what he said, but I was in such a state at the time I might be wrong) in both eyes :eek:. However, he said that he had both to dialate the pubil and multiply the image by 40x to see the thing and that it is not on the part of the eye used to see anyway. (The pressure was also normal in both eyes, and I was told it was nowhere near being classed as grade 1 retinopathy) His opinion seemed to be that it was nothing to worry about, just something that diabetics get- so not to worry about it just to come back in 6 months time. I AM WORRIED THOUGH!

In Jacks case was it the retinopathy or the surgery that caused the loss of vision? (Sorry if that is too nosy!)

Lorna

[Willow]

I am still waiting for my referral appt to come through. I told my GP I have private medical insurance but he said I would not be able to go private with this as it is connected to diabetes & the pmi fight like **** not to pay up. So I am having to be patient with the NHS...it's soooooo hard! :rolleyes:

[Deager]

Lorna,

Not nosy at all! This is the place to share our dirtiest secrets....LOL!

If Jack's retinopathy had gone untreated, he would have gone completely blind. Where the laser 'touched' cauterized the bleeding vessels and because he had so many bleeders the treatments actually caused him to lose his peripheral vision. That was pretty much instant loss. But....better than blind!

Diane

[Lorna]

Willow, you might have a bit more luck if you phone the clinic you are supposed to be being refered to directly and nag them. That will also put your mind at ease that the paperwork has not been lost.

[Willow]

My GP told me it isn't an urgent referal but he told the hospital it is so that I get an appt within 2 months - otherwise it could take 6 months!

I received a letter from the clerk at the hospital about a week ago confirming they have received my doctor's referral letter & an appt will be sent out in due course.

Thanks for your help.

[Lorna]

Glad to hear that, cos if he said it is not an urgent referal it must mean he does not believe your vision to be in immediate danger? Im going to see the consultant on Tuesday, so I think I am going to discuss the opticians report with him now that I have had time to think about it.

Hang in there

Lorna

[vgray77]

Hi Willow, glad to see that your appointment will be soon. I was dx'ed Nov 5th last year when I was having some preop blood work done. Prior to that my eye sight was always bad, 20/600 in one eye and 20/400 in the other. In the months before being dx'ed my sight improved so much that I could see better without my glasses than with them. That should have tipped me off that something was wrong. The high sugar was distorting the lens. Within weeks of getting my blood sugar under control my vision went back to my normal.

Best of luck

Vic

[Lorna]

Hi Willow, don't knwo if this puts your mind at rest or not, but the Dr told me it doesn't usually require treatment until you can see 6 micro anurisms in the eye.

Good Luck

Lorna