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27year old woman type 1 with retinopathy

S

sarahm723

Well-Known Member
Messages
76
Type of diabetes
Type 1
Hi my name is Sarah I'm 27 I'm diabetic type 1 since 12... iv always struggled with it from a young age.. never had a good hba1c . It was 94 it's now down to 84 so right direction . Iv only been good for the last 2 months because I'm terrified now I have rethinopathy and it's not good.. I have had laser on my right eye and 2 weeks after the laser my eye got a floater and went all blurry and is still blurred. Note my vision was perfect before the laser but I got another bleed. I'm going back in for treatment again Monday. I can not sleep I'm beside myself with worry for my future ... I'm only a young woman. I'm terrified I'm going to lose my vision has anyone been through this and there vision went back normal and any way to stop these bleeds and to stop this.. postseason from having good control... I just am so beside myself with fear
 
Hi @sarahm723 - how is your bg control in general ? A few years after diagnosis I had a result come back with background retinopathy which lasted 2 years, however after stabilising my bg levels over a year my following result came back as normal, so it really depends on how well controlled you are, Dr Bernstein reversed his retinopathy and wrote a book about it, so have hope.
 

Did the Ophthalmologist say the blurriness was due to a bleed?

I'd go along with their advice and accept that you need more surgery, the Ophthalmologists are very experienced and will only carry out laser surgery if they think its absolutely necessary. The following article has some great advice and info on laser surgery and some of the newer treatments on offer such as Avastin, Lucentis and Eylea:

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

Having had laser surgery myself I know exactly how your feeling @sarahm , but rest assured you'll be in good hands with the Ophthalmology team. Good luck.
 
Sounds like the "blurry wave came over my eye" thing could have been a result of the initial laser surgery to me. I don't know if the eye doc took a look at it after it happened or not though. There's a certain trend within the medical profession to "blame the patient" sometimes. I don't really agree with that unless it's obvious (like someone who quits their BP medicine and has a stroke).
 
Not surprised you're concerned .... there are others who've been thru this but the Hba1C needs attention as well as you'd know. Let's not overload the truck just yet. Eyes first, BS a close second.
 
I am 33 and have maculopathy in my right eye, retinopathy in my left....

I have been attending the Ophthalmology every 3 months and there was no change up until my last appointment where more leakage was noted, which was expected as I got blurriness on and off for a few weeks on the run up to my last appointment..

The blurriness doesn't last forever and seems to get better the more stable the BG is kept.....its not nice though....my eye seems to think there is something in it and starts watering and becomes sore....

I have to go in soon [appointment not set yet] to discuss treatment options, so I suppose in away I am behind you in the whole process but like you there is a but of fear about what the future holds....

I am quietly confident in the treatment options available today and with extra effort to keep the BG stable [stable being more important than bang on target] and keeping BP down if it needs to, we have a very good chance of keeping our vision in all its glory...

What was the laser for exactly.....? Like, how bad did it have to be to get to the laser stage....

I kind of feel I have skipped that stage and went straight to maculopathy.....even though I know maculopathy is the same as reitnopathy, just in the central vision area of the eye....
 
OK, so you've got a high HbA1c reading and are currently experiencing Retinopathy problems with your eyes. It's someting to be concerned about, the eyes being your first priority, but this is being dealt with, so what you need to do is not over concern yourself and worry unduly.
If you have laser treatment for Retinopathy, there is sometimes these little black 'floaters' that seem to occur in your vision and it's quite common for these to take some time to eventually fade away, sometines it can take several weeks.
A second session of laser treatment is again nothing to get overly concerned about, for as I have outlined, they are looking after your eyes and the slight changes that they are detecting are being dealt with.
What you need to do is simply learn to relax, I know it's a difficult and worrying time, but many of us have been there with eye problem and we've got through ti all.
You are obviously an intelegent individual, and are aware of the importance of good diabetic blood/glucose control (HbA1c) so why not use the time to see how you can improve this for yourself with you diet/Insulin regeme.
Any step, no matter how small, if it's in the right dirrection is benificial.
Please let us all know how you get on - Best wishes.
 
My hba1c is 84% and it used to be over 100% .. I'm doing everything I possibly can to get it perfect but something's my sugars go up and down for no apparent reason it's so frustrating. I feel so useless I have it 15 years I should be well control of this at this stage but I find it so hard. Every day I wake up in fear is my vision going to go it's affecting my life. My vision has always been perfect and if they didn't look in the back id never know I had an issue but I needed the laser but now my eye is blurry .. it happened 2 weeks after the surgery which I don't understand.. I think I had another bleed ?... iv to go back in for laser Monday again is that gona name my vision worse I'm just so frightened. I pray to god I have faith but has it gone to far if give anything to get back to a stage where I'm told there normal again or at this stage is it impossible .. appreciate the replies thankyou x
 
My hba1c is 84% and it used to be over 100% .. I'm doing everything I possibly can to get it perfect but something's my sugars go up and down for no apparent reason it's so frustrating. I feel so useless I have it 15 years I should be well control of this at this stage but I find it so hard. Every day I wake up in fear is my vision going to go it's affecting my life. My vision has always been perfect and if they didn't look in the back id never know I had an issue but I needed the laser but now my eye is blurry .. it happened 2 weeks after the surgery which I don't understand.. I think I had another bleed or so they say .. iv to go back in for laser Monday again is that gona make my vision worse I'm just so frightened. I pray to god I have faith but has it gone to far if give anything to get back to a stage where I'm told there normal again or at this stage is it impossible .. is it different and worse to background retinopathy...? appreciate the replies thankyou x
 
@sarahm723

Getting your HbA1c down from 100 to 84 is a big improvement, but when your diabetes has been poorly controlled for some time (and you have diabetic retinopathy) you have to be careful when improving your overall bg control, the Ophthalmologist should be able to explain more on Monday but the following article explains that improvements should be made gradually rather than suddenly which can make retinopathy worse:

http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm

Type 1 is a difficult and frustrating condition to live with, but by starting with the basics such as basal testing and getting your insulin-to-carb ratio's correct will go a long way to improve things, if you've not purchased the book Think Like a Pancreas then its worth the money to do so, it's a great book and will teach you to manage your type 1 effectively, the book comes highly recommended by the type 1 forum members here.
 
Thanks everyone for the well wishes . I got the laser for the back of the eye where the rethinopathy is but I'm not sure was it to prevent a bleed or to stop a bleed that was already happening.. I was 2 weeks over it when a light came into my eye and since then when I move my eye it's like fluid floating over my vision and floaters but the blurry vision is the most concerning.. I have inflammation at the back of the eye and leakage or something but I'm wondering will this go in time.. it happened 2 weeks ago... I'm back in for more laser Monday .. I just would like to know will the leaking go away and dry up and my vision come back clear it's so frightening ... I feel so selfish people in this world with sickness that kills them and I had a choice to avoid all this and now I can't take back all the years of anger and hate and denial towards this condition .. I pray to god for healing and a chance but maybe not this time but I'm trying to keep sugars down but also told that too good and I damaging it more I feel lost
 
Hi Sarah! I thought I was reading my own post for a moment there.

My name is also Sarah, I am 27 and have found out I have severe retinopathy. I am waiting for treatment. I understand how scary it is and I am here if you want to chat. I have had hba1cs of 100 in the past. My control was awful for 8 to 10 years I had diabulimia and omitted my insulin. I also have neuropathy and gastroparesis.

Just remember as scary as retinopathy is there is treatment to stop it progressing. The most important thing is to have control of your levels and also that they stay level and don't fluctuate as much as possible.x
 

Hiya Sarah when are you having your treatment.. is your vision perfect ?.. mine was perfect before I had the laser... the laser seems to have a risk of damaging the vision which is so scary.. I'm blurry in that eye over 2 weeks now no improvement .. there's is a liquid thing floating around my vision and floaters.. I can accept floaters and hopefully in time they go.. it's just the fact I'm now blurry and I wasn't is scary.. I had treat ment a month ago and then 2 weeks after treatment all of a sudden something happens a light came in my eye and I'm blurry since. More laser Monday bday... the back of my eye is inflamed but not sure when that will go down I wasn't given anything . Hope yours goes well x
 
Hi Sarah
While anything different from the norm is scary sometimes it takes a bit of time for the eye to adjust. The Opthamologists have been dealing with this for a long time. I had a retinal bleed in each eye 16 years ago and followed by 2 vitrectomies. So nice then I've had 37 injections for macular oedema and can still see. Passed my field of vision test last with with 96% so don't get over worried about it - easier said than done I know.
I hope all goes well.
 

Thankyou for your msg.. what is macular oedema can I ask
 
I don't read links anymore sorry if that sounds stupid I always read things I don't want to read that terrify me.. I'm curious because I have heard this word at my app... I'm a worrier I not sleep over all of this and I used to google things and I can't do it to myself anymore thanks though for sending it
 
sarahm723 said:
Thankyou for your msg.. what is macular oedema can I ask
Click to expand...

Hi,

Funny enough. That what I got..
Or had. Distorted vision in my right eye due to fluid on the macula bulging the retina..
The letter S looks like a 6 that sort of thing? Distorted/a little blurred central vision. Imagine the back of the eye, then think a satalite dish with a dent kicked in from the back? That's what my scan looked like....? Though with fluid pushing on the retina..
A course of injections & some intensive followup checks kept it under control for me.

Just to address your earlier posts. I have no retinopathy... Always had good scans.
So the MO came as bit of a shock?
 
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