27year old woman type 1 with retinopathy

[Duotrans]

Thankyou for your msg.. what is macular oedema can I ask

Hi Sarah, it is fluid that builds up and in the back of the eye. A side effect I was told of the Vitrectomies. It is treated by Lucentis or Eylea injections to the eye. It is different from Age related macular degeneration. The treatment was approved in Scotland late 2012 but took another year or so in England to be approved for diabetics. (my auntie almost moved back to Scotland to get her injections.)
Please don't worry about this being the next thing to happen as I was over 30 years down the line before this with a lot more issues added on top before then. I have a standing joke with some of my consultants that if I was a horse I'd have been put down a long time ago but their argument is that they've spent too much money on me as it is so they'll keep going.

 

[sarahm723]

Will the injections make my vision go back to normal ... please god ??? X will this inflammation go away an is it a possibility it's just the inflammation that has me blurry for a while ???

 

[sarahm723]

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?

I don't know I have mo.. could it just be inflammation after the laser ... I don't know... do you have normal vision again after injections.. I just want to be ok ... will the fluid go itself is this a possibility

 

[Jaylee]

I don't know I have mo.. could it just be inflammation after the laser ... I don't know... do you have normal vision again after injections.. I just want to be ok ... will the fluid go itself is this a possibility

Without managing your diabetes? Any treatment will take longer to decide what's happening with your eye issue.
Actually. It wasn't until I saw a post from @noblehead about rappid A1c control that I put 2&2 together why I could possibly have developed the MO?
I can understand/empathise your worry.
You need a confirmation from a consultant on what the actual eye issue is?
Only then can someone with experience of the associated treatment can give a clue as to what's involved?

My own experience in treatment was brilliant... I had no idea nursing assistants held your hand while the procedure went underway, anymore? Not that I need that "sort of thing." But I couldn't fault the compassion offered either..

 

[Duotrans]

Will the injections make my vision go back to normal ... please god ??? X will this inflammation go away an is it a possibility it's just the inflammation that has me blurry for a while ???

The injections are a separate treatment from that for retinopathy I.e the laser treatment. My memory of the laser treatment for the retinopathy was that my vision did clear up and go back to normal without the fuzziness. Unfortunately I had left seeing the ophthalmologist too long thinking work was more important than health, by which time sight was gone temporarily in one eye and the laser treatment didn't stop the haemorrhage in the second eye. By the time 2 lots of surgery was over I needed reading glasses but otherwise no problems with fuzziness etc. You learn after that, that you're health is more important than work as I was treated like a number (before DDA) and paid off for not being able to work during a normal busy period of work. Never let it happen again after that. Life's too short and you only get one so enjoy it.

 

[Dark Horse]

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

I understand not wanting to google things as there are a lot of unreliable sources on the internet. However, the link I sent was to a leaflet produced by Moorfields, a leading Eye Hospital, and is aimed specifically at people with diabetes. I guess there may be too much information (like how to reduce the risk of getting macular oedema and how it may be treated if someone does get it) so I'll just answer your specific question with a quote from the leaflet:-

In diabetic macular oedema, blood vessels leak fluid into the retina.​

 

[**shell**]

Hi Sarah.
I'm 29, T1 since 11 and I've also always struggled from the beginning. I've never had an hba1c within a safe range; I get so close then I seem to lose my way. And our similarities don't stop there... I was diagnosed with retinopathy in November and it was terrifying. I felt sick with dread/fear/anxiety. I had laser treatment, my right eye too, and since I see floaters in my peripheral vision (they resemble flying birds which can be a little distracting).

At my last appointment (March) they said that there was another bleed but because of how much laser treatment I had in November they are just keeping an eye on it (pardon the pun).

I share your same fear... I am young, I shouldn't need to worry about losing my eye sight... but I suppose it's a real fear and it feels so unfair.

However, I am trying to turn my experinece into a positive one after all we can't change our past but we can alter our future and hopefully I will see my hba1c come down and eventually get the all clear from the Eye Hospital. And I hope you can try and do the same.

Get in touch if you would like to talk more

Shell
xoxox

 

[noblehead]

Actually. It wasn't until I saw a post from @noblehead about rappid A1c control that I put 2&2 together why I could possibly have developed the MO?

Just to clarify @Jaylee , the link that I posted earlier says that the risk is greater if the persons diabetes has been poorly controlled for some time (as in the following quote):

• A sudden improvement (lowering to normal) of glucose levels in a person whose diabetes has been poorly controlled for sometime may cause rapid and often uncontrollable retinopathy. This is a very common problem in clinical practice. Good diabetic control is essential in the long term, but unfortunately in the short term may cause a rapid deterioration in retinopathy. A lot of laser may be needed, and usually stabilises the condition.

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

 

[jah620]

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 Sarah - don't lose hope! I'm 26 next week, and I was diagnosed with background retinothapy 2 years ago. It freaked me out, I too was terrified that I'd lose my sight. However, it was a wake up call - I began to get my blood sugars under control. It's taken me 2 years to get to this stage, but finally my eye screening results have come back normal. So yeah, if you can get your blood sugar ranges fairly stable, then you should have nothing to worry about! Good luck!

 

[sarahm723]

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

How are you getting on now sarah

 

[sarahm723]

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.

Hiya . I had vitrectomy last Friday ... I’m soar.. 3 days after I noticed blood dots .. that was not there after the surgery ... is this normal ? So afraid of everything thankyou

 

[NoKindOfSusie]

If it helps I am 24 and this stuff is just a cold horrible fear... That fear keeps me honest, I would no more do anything to mess up control than I would jump into a fire. But I totally get why this stuff happens to people because you have the choice between having a life and risking this happening, or being really careful and basically having no life. Isn't that basically the truth?

 

[EllieM]

But I totally get why this stuff happens to people because you have the choice between having a life and risking this happening, or being really careful and basically having no life. Isn't that basically the truth?

It's a question of striking a balance : no, you can't afford to ignore your diabetes and run high HbA1Cs for years on end, but most people run along with reasonable (not perfect) HbA1Cs and minimal complications (I'm 56 and my body is definitely not what it was when I was 36 but I still live an active lifestyle and don't find that my health stops me from doing anything that I want to do.) Remember that the 70 and 80 year old T1s out there mostly had their first few decades without blood testing meters. You can bet their HbA1Cs were mediocre at best.
I sometimes wonder if the superior testing equipment now available is more of a curse than a blessing, as it encourages us to obsess and micromanage our levels rather than getting on with our lives. (Though congrats to those of you who keep "perfect" non-diabetic blood sugars, I know some people manage to do it )

And eye doctors have got very very good at treating diabetic retinopathy etc (decades of practice) so it's well worth getting your eyes checked regularly, however good (or not so good) your diabetic control has been.

 

[Juicyj]

I sometimes wonder if the superior testing equipment now available is more of a curse than a blessing, as it encourages us to obsess and micromanage our levels rather than getting on with our lives.

Couldn't agree more..there is far too much obsession with numbers when we should be focusing on living our lives and 'getting on with it'.

 

[NoKindOfSusie]

Couldn't agree more..there is far too much obsession with numbers when we should be focusing on living our lives and 'getting on with it'.

Isn't that just an incredibly dangerous way to go though?

I couldn't enjoy being all don't care about it because I would know how much damage I was doing.

The choices are that it's miserable if you're really careful because you can't do anything, and it's miserable if you aren't because of the damage you are doing.

I don't think it's very helpful to pretend.

 

[Juicyj]

Isn't that just an incredibly dangerous way to go though?

I couldn't enjoy being all don't care about it because I would know how much damage I was doing.

The choices are that it's miserable if you're really careful because you can't do anything, and it's miserable if you aren't because of the damage you are doing.

I don't think it's very helpful to pretend.

It's not pretending Susie, wouldn't you agree that you've almost stopped living as a result of your obsession with numbers ? It's not dangerous unless you are running high constantly, if you're approaching this sensibly and exercising control then there's no need to obsess over the numbers. Having type 1 doesn't mean you have to live your life by it. It is all about balance.

As you're newly diagnosed it will get easier for you in time, to quote the line from @Scott-C made on another post recently: https://diatribe.org/issues/58/quotable-quotes

"In all the work with diabetes technology I’ve done, I’ve worn CGM for long periods of time. I don’t have diabetes, but I’ll eat a dessert and go up to 200 mg/dl. I’ll also drop down to 50 or 60 mg/dl. People with diabetes are comparing themselves to a false standard. The pancreas, for all of the advantages it has, still allows big excursions. It’s crazy to think it’s ideal.”
-Dr. Steven Russell (Massachusetts General Hospital, Boston, MA) urging people with diabetes not to be too hard on themselves

 

[NoKindOfSusie]

"In all the work with diabetes technology I’ve done, I’ve worn CGM for long periods of time. I don’t have diabetes, but I’ll eat a dessert and go up to 200 mg/dl. I’ll also drop down to 50 or 60 mg/dl. People with diabetes are comparing themselves to a false standard. The pancreas, for all of the advantages it has, still allows big excursions. It’s crazy to think it’s ideal.”
-Dr. Steven Russell (Massachusetts General Hospital, Boston, MA) urging people with diabetes not to be too hard on themselves

Yeah and when he eats that dessert he knows full well that all he has to do is wait and it will constantly be corrected automatically for him.

I don't have that (and neither do you.) So you go to bed every night thinking, I am about to be not in control for eight hours, have I set everything up so it will be OK? Or you go to work, and you think, there is a limit to how much I can test in the next ten or eleven or twelve hours, how much damage is this going to do? And what if the day is really physical, I will feel bad and have to eat more stuff, and then it will be really unpredictable, those days are the days that really make me feel sick. You haven't got a hope of getting it right long term. I am not scared of what being at 12 will do to me TODAY. I am just aware of what it will EVENTUALLY do when it happens dozens and dozens of times, which it will, I mean it probably already has, I can't test every ten seconds. So it will happen at some unknown future point which may be soon or it may not be but in the meantime here I am (here we all are) left trying to do something that is absolutely impossible. So yes I try really hard to get it right and I fail anyway.

I don't do failing at things, this I can't win at, so what is the point.

 

[Grant_Vicat]

Hiya . I had vitrectomy last Friday ... I’m soar.. 3 days after I noticed blood dots .. that was not there after the surgery ... is this normal ? So afraid of everything thankyou

Hi @sarahm723 Just want to offer a few words of encouragement. I first had blurry vision at the age of 13 in 1971, having already been Type1 for 12 years. In those days you could only do urine tests, which quite honestly would never help you keep fine control. By early 1979 I had a major haemorrhage and over 1200 laser burns of the first primitive treatment available (King's College Hospital London). Within 4 years I had had both eyes lasered more than once. I last had it done in 1983, even though I was Type 1 until 2013 (pancreas/kidney transplant). The picture on the left was taken 4 years ago and the glasses on a string are just reading glasses. I still use glasses only for reading (and typing!). As you can see, I have had blurred vision and retinopathy which have caused all the effects you describe on this thread. As soon as I had my own meter, (!981) I could see a correlation between blurred vision and persistently high blood sugars. I also noticed that when my HbA1C came down appreciably, I stopped getting cracked skin, spots, diarrhoea and a runny nose. Let alone the fact that as my father remarked in the mid 80s "I don't think you've ever experienced what it is like to feel well until now". He was right. I do have a small amount of scarring, which makes me avoid using binoculars in bright light, but my sight is still excellent over nearly 60 years.I hope you might be inspired by all this and realise that what can (and did at first for me) terrify you into jelly and inaction, can also be appreciably controlled with determination. Hope all goes well for you.

 

[sarahm723]

Hi @sarahm723 Just want to offer a few words of encouragement. I first had blurry vision at the age of 13 in 1971, having already been Type1 for 12 years. In those days you could only do urine tests, which quite honestly would never help you keep fine control. By early 1979 I had a major haemorrhage and over 1200 laser burns of the first primitive treatment available (King's College Hospital London). Within 4 years I had had both eyes lasered more than once. I last had it done in 1983, even though I was Type 1 until 2013 (pancreas/kidney transplant). The picture on the left was taken 4 years ago and the glasses on a string are just reading glasses. I still use glasses only for reading (and typing!). As you can see, I have had blurred vision and retinopathy which have caused all the effects you describe on this thread. As soon as I had my own meter, (!981) I could see a correlation between blurred vision and persistently high blood sugars. I also noticed that when my HbA1C came down appreciably, I stopped getting cracked skin, spots, diarrhoea and a runny nose. Let alone the fact that as my father remarked in the mid 80s "I don't think you've ever experienced what it is like to feel well until now". He was right. I do have a small amount of scarring, which makes me avoid using binoculars in bright light, but my sight is still excellent over nearly 60 years.I hope you might be inspired by all this and realise that what can (and did at first for me) terrify you into jelly and inaction, can also be appreciably controlled with determination. Hope all goes well for you.

Thanks for taking the time to write me such a long detailed hopeful msg much appreciated. How times have changed