Top of the world one day, retinopathy issues the next

[bennyg70]

Firstly - sorry I havnt been online too much recently, work and home life has been hectic!

I turn back to the diabetic community however in a time of a little need of support..

Tuesday hospital appt this week. Fantastic. Hypertension clinic.

HBA1C - 6% from 6.3% previously, Liver good, kidneys fine, protein in urine down to next to nothing, Cholesterol down to 4.6 from 4.9. Discharged Yay! ...

Wednesdays hospital appt... Eyes

Just to give you some quick background, Ive always had some background retinopathy since I was 18, so 10 years now. Small changes which have come and gone and stabalized and gone again and come back etc etc. Just a recheck eevry year, and occasionally an extra check at the hospital for good measure. (I spent my first 18 or so years as a naughty diabetic). The last year or so they have made the check ups more frequent and noticed more changes. 6 Months ago they took photos which worried them slightly however when investigated further they were happy that the changes wernt near the centre, and were not of a major concern and should be closely monitored. Therefore my checkup yesterday.

When I went yeserday, there was a LOT of ummming and arghing as he looked at the photos the scans and deep into my eyes. His impression was that things had progressed. Im going to try and repeat some of the words and phrases he came out with. (Its worth noting that the last 4 times ive had my eyes checked, whether it be via the opticians or hospitals have been via 4 different eye docs... Annoying.com.org.co.uk)

Suspected ischemia?
R2 Grade
Not requiring laser yet, However things are bubbling away
Not in the centre however round the edge

Im booked in for Flurescein angiography... Yellow dye pumped into my veins which will help document the vessel structure in my eyes better. Lovely. Thats in a month, and a further check in 4 months.

Obviously Im worried... I think Ive already accepted that I will need laser treatment at some point and I think that point is edging nearer. I was looking for a bit of advice of people who had been through the same stages as myself and who may have had laser.

Some questions..

How successful has laser treatment been for you?
How many times can you have laser?
How long ago did you have it and are things still alright?
How did it effect your vision?
Do you expect to have more problems further down the line?
When is it too late!?

Thanks for the support

 

[Redkite]

Well done on the fab a1c's! I can understand how worrying it must be to have eye changes but I'm sure your excellent control is preventing things getting worse. Hopefully someone with specific experience of eye treatment will be along to advise. In the meantime, I can tell you that my type 1 friend (who is a 50 year old lady who was diagnosed type 1 aged 4) had to have laser treatment to both eyes to seal off bleeding blood vessels in her retinas. She had the treatment about 6 years ago following the birth of her 2nd baby (I believe pregnancy can accelerate retinopathy), and she only required one treatment and her eyes have been absolutely fine since.

 

[bennyg70]

Well done on the fab a1c's! I can understand how worrying it must be to have eye changes but I'm sure your excellent control is preventing things getting worse. Hopefully someone with specific experience of eye treatment will be along to advise. In the meantime, I can tell you that my type 1 friend (who is a 50 year old lady who was diagnosed type 1 aged 4) had to have laser treatment to both eyes to seal off bleeding blood vessels in her retinas. She had the treatment about 6 years ago following the birth of her 2nd baby (I believe pregnancy can accelerate retinopathy), and she only required one treatment and her eyes have been absolutely fine since.

I think a few reassuring stories like this will ease my mind a bit! Thanks for the reply Redkite

 

[everydayupsanddowns]

Congrats on the great results Benny.

Sorry to hear about your eye stuff though. I can understand why you are worried. Hope others can chip in with reassuring stories.

 

[Phil65]

Hi Benny,

Great HbA1c!....your hard work has paid off 🙂
I found with my eye checks it really depended on who you saw (excuse the pun) I have found that there is no consistency, one minute your eyes are fine, then they are not so fine and then miracles... they are fine again! My eyes have always been a worry to me, as I am sure yours are too...but with great bg control...which you have, you are giving yourself the best chance with regards to fewer complications.

I'm sorry I can't answer your laser questions but I've not heard many horror stories about laser treatment......at least it is there if needed. Hope your next check goes well......I've missed your posts by the way.

 

[bennyg70]

Hi Benny,

Great HbA1c!....your hard work has paid off 🙂
I found with my eye checks it really depended on who you saw (excuse the pun) I have found that there is no consistency, one minute your eyes are fine, then they are not so fine and then miracles... they are fine again! My eyes have always been a worry to me, as I am sure yours are too...but with great bg control...which you have, you are giving yourself the best chance with regards to fewer complications.

I'm sorry I can't answer your laser questions but I've not heard many horror stories about laser treatment......at least it is there if needed. Hope your next check goes well......I've missed your posts by the way.

Cheers for the reply Phil... Works clamped down a lot more on internet usage !! Ill t ry and make more effort...! Hows things with you?

 

[Phil65]

Cheers for the reply Phil... Works clamped down a lot more on internet usage !! Ill t ry and make more effort...! Hows things with you?

I'm good thanks, recently returned from Hong Kong/Thailand holiday ....control remained surprisingly good! The last week or so has seen morning hypos almost every day so now lowering my basals slightly.....seasonal change. However, looking at the weather outside.....I might have to change them back again!

 

[bennyg70]

I'm good thanks, recently returned from Hong Kong/Thailand holiday ....control remained surprisingly good! The last week or so has seen morning hypos almost every day so now lowering my basals slightly.....seasonal change. However, looking at the weather outside.....I might have to change them back again!

We've had summer I'm afraid, that it, this is now winter....until next may.

Glad things are going well mate!

 

[PattiEvans]

Benny

Sometimes when you really tighten up control it can affect your eyes. Hopefully then they recover when you maintain the better control.

 

[bennyg70]

Benny

Sometimes when you really tighten up control it can affect your eyes. Hopefully then they recover when you maintain the better control.

Ive read asbout that before... seems like some kind of evil injustice to me! The docs also mention it yesterday too. The problem is, its been a year now of been in the 6%s on my hba1c, and things still seem to be progressivly getting worse...

 

[Phil65]

Ive read asbout that before... seems like some kind of evil injustice to me! The docs also mention it yesterday too. The problem is, its been a year now of been in the 6%s on my hba1c, and things still seem to be progressivly getting worse...

.......let's just hope that it is just the screeners/eye gurus getting worse!

 

[Copepod]

Sometimes, life really is c**p - sorry about bad language, but that's the only way I can deal with some situations, whether they affect me or other people. Having accepted that c**p happens, the next stage is finding a solution, often by asking other people, professionals, friends etc, and accepting help which can come from most unexpected places 🙂

Same as a comment / helping hand / opening door / giving directions to a lost person can help more than you might expect. Like yesterday, suggesting another way round, to a mother with pushchair who wouldn't have fitted through gap between lorry stabilising leg and fence, to prevent her reaching dead end and having to backtrack further.

 

[itsallgood]

Benny, I've never had laser treatment but even though my levels continue to go in the right direction (thanks to the great people on here!) my last eye screening showed background retinopathy for the first time... very disappointing and very worrying as I'm blind in one eye already following an accident at 4yrs old.

Don't know if this is as a result of better levels or not but sometimes it feels like you just can't win

 

[AJLang]

Benny I've been trying to decide all day what to write with regard to this. It's really good that it is not near your macula - my macula in my left eye is so bad that I can't read with it although, ironically, the problem isn't related to diabetes. With diabetic retinopathy there is no telling how fast it will or won't progress - I've had background retinopathy for 20 years but was told only the other week how mild it is. Therefore your progression may be very slow. I've had laser for exudates and it didn't hurt at all - that was two years ago and it didn't need to be repeated. However I have also had laser for glaucoma and yes then a lot of painkillers were needed but I do have very sensitive eyes when it comes to pain. It's great that you are being so closely monitored because they can sort out problems for you as occur which makes your prognosis so much better. If they were very worried you would already be having laser. With the fluroscein angiogram they put a cannula in your hand and I didn't feel any sensation whatsoever when they put the dye in. Easier said than done but try not to worry and big hugs for you because I know that when it comes to eyes it is scary.

 

[Flutterby]

Hi Benny, I had laser treatment for maculopathy caused by the diabetes. I was very scared but it was more uncomfortable than painful. It wasn't painful at all. Lots and lots of drops and afterwards when the feeling came back to my eye it felt very cold which was odd. My vision improved in that eye although they said it wouldn't. I was able to read more easily afterwards. I haven't needed any more treatment as yet - that was 3 years ago. All the very best with your treatment, whatever it turns out to be.x

 

[HOBIE]

Hi Bennyg. Since been T1 for 47 years i feel as though i had the lot. (& prob have) I have had a bit of lazer done by a exellent team at sunderland eye hosp. No body can tell you how it feels but i try to keep relaxed & think of other things & its all done. You can get an injec in you eye to numb it but i had it once & thought that was worse. If you get the right guys on the job it isnt that bad & the sooner you get it done the better you will be. (if it needs doing) Good luck 🙂

 

[bennyg70]

Hi Guys thanks so much for the replys!

I dont think its the pain of the laser or uncomfort, its the fear of losing my sight. They can do what they like to them, as long as I can see at the end of it..! Those diabetic gods can take a leg, but not my sight!!!

Hobie, when did you have your laser treatment?? Have you only had the one bout? How long after being diagnosed did you have it?

Im 22 years a diabetic now, my aim is to get to minimum 25 before needing laser. May be wishful thinking.

Thansk for the reassurence flutterby.

AJ, I was looking forward to your response also - Thankyou.

Does anyone take any supplements?

 

[missclb]

Hi Benny,

My doc prescribed me a supplement called Lutein, x2 6mg tablets with my evening meal, when they found the start of retinopathy in one eye and the start of macular degeneration in the other, at my last appointment. Truth be told, i'm not sure if this supplement is to help with both or just one of these, but i'll take it anyway and keep my fingers crossed that it helps with both. Also, make sure you eat salmon once a week and don't forget those leafy greens!

I'm with you, they can have a toe or two, but leave the eyes alone!! 😱