Diabetes Related Eyes

[saz1]

Hey, you're not going to go blind just like that! If you have some deterioration, it can be often stalled and even improved but it takes a strong commitment to happen. I don't know how old you are but if you are interested, have a look at this site. This doctor has been diabetic since the fourties and was predicted to die at an early age but has stalled all his complications and even improved some. http://www.diabetes-book.com/

Like said it's not necessary easy especially if you are a carbholic, but still worth thinking about!

I find that this mentality of highlighting the progressiveness etc very hindering and annoying. It is very difficult to keep positive when bombarded with all the worst case scenarios and complications. But remember, the guidelines given to us from our healthcare teams are way too high and promote a lot of harmful habits. For example, my GP (generally very good but I think saturated with badly controlled diabetics) told me that it was pretty much impossible to achieve non diabetic blood sugars and he was going to put me on gliclazide after my first Hba1c after diagnosis since I wouldn't be able to bring my sugars down to below 10 (16 at diagnosis) with metformin, diet and exercise. I am now approximately 4 weeks from diagnosis and just this week my sugars have been under 6 every time I tested... I'm going to see him tomorrow and have spoken to him on the phone. He is quite gobsmacked to say the least... :wink: Makes me ever so pleased to be able stick metaforic two fingers up!

 

[ShyGirl]

 

[bonerp]

i have retinopathy and was recently told by my SDN that even people with very good control can have severe retinopathy. I know I try my best to keep my BGs under tight control but somehow seem to fail more often than not. I just wish I had been given the opportunity to go on a pump then because I do find it more successful than MDI.

I have now had laser for the best part of 10 yrs and now theres hardly any room left to do anymore laser. I'm still having bleeds now. Had one last week. Sad thing is the hospital should have had me booked in for another check up last month but once again forgot to action it! This isnt uncommon.

TBH I am sick of retinopathy and will be asking more about a vitrectomy at Mondays appointment. Its getting close to having to do that anyway. This is where they remove the vitreous gel which hopefully stops further bleeds.

I'd say you are still a long way off that so if you can reduce your BGs and probably more importantly attempt to stabilise them - ie stop the high and low swings, you'll be helping more than I have been able to with mine!

Paul

 

[Trinkwasser]

I find that this mentality of highlighting the progressiveness etc very hindering and annoying. It is very difficult to keep positive when bombarded with all the worst case scenarios and complications. But remember, the guidelines given to us from our healthcare teams are way too high and promote a lot of harmful habits. For example, my GP (generally very good but I think saturated with badly controlled diabetics) told me that it was pretty much impossible to achieve non diabetic blood sugars and he was going to put me on gliclazide after my first Hba1c after diagnosis since I wouldn't be able to bring my sugars down to below 10 (16 at diagnosis) with metformin, diet and exercise. I am now approximately 4 weeks from diagnosis and just this week my sugars have been under 6 every time I tested... I'm going to see him tomorrow and have spoken to him on the phone. He is quite gobsmacked to say the least... :wink: Makes me ever so pleased to be able stick metaforic two fingers up!

The problem is circular logic IMNSHO, they recommend exactly the wrong diet and tell patients not to test. Then they see rapid progression which reinforces their (accountants) opinion that money spent is money wasted.

I was just having this argument (AGAIN!) elsewhere with a clueless muppet, I dug out the ADA reference to diet which used to give an improvement of 1 - 2% in Aic and has now been extended up to 2.9%, and compared and contrasted that with the huge improvements we see routinely in all diabetes forums, 5 - 8% is commonplace and 10 - 13% can occur. Most (but not all) medics don't see this and sadly a proportion of those that do fail to understand the dietary strategy necessary to achieve it.

It's much the same with all complications. There's no guarantee but you can hugely improve the odds.

 

[SHESCOOBY]

Hi Guys

I will tell you about my experience

I have been type 1 diabetic for over 22 years, thru my teenage years it was hard to keep BS stable, I was growing up and going out with my friends etc having a good time and not worrying about what will happen later on in life. If I knew then what I knew now i would have looked after myself better thats for sure.

In 2005 I was sent to the eye department to see a Man about having some laser treatment, which I had under gone, during this time i had fallen pregnant which wasnt the best thing to do as eyes were still under going laser. During the pregnancy the vessels started to grow even more (this can happen whilst pregnant) Anyway Doc anticipated that I might have a bleed after I give birth to my child. Anyway after having my son 3 weeks later guess what i had a bleed in the right eye had to have a op called a Vitrectomy which is were they suck the blood out from behind the eye as well as the jelly. However once they done this, they managed to detached part of my retina, so had to under go another op to reattach the retina, this is were i had to posture for at least 5 days in a certain way. Anyway after a further 8 ops of trying to re-attach the retina it was sucessful, however not brilliant, basically like stripping a peice of wall paper off and re sticking it back to the wall, i then had to have a cataract op and then a another small op to scrap the membrane away that had grown over the new lence, this happed because of my age, 36, (the Membrane) this has been going on since 2006 and that last op was just before xmas last year (2008) best christmas Present I had thats for sure as I can see clearly now, its not perfect sight like the other eye but I can see

Anyway me and my husband done alot of research in diabetes and eyes, apparently bloods should run no higher than 6 and blood pressure plays a key roll as well, mine is 120/70 which is brilliant anything higher can help towards having diabetes retinopathy. I am so careful and try not to go above 6. I have been for a checkup this week and its all perfect and settled.

However My brother isnt so lucky, blind in one eye and only 40% in the other due to years of in denile of having diabetes......... and now he is suffering.... he has major probs with Kidneys and liver and had a heart attack in 2008 and recently a small stroke, he isnt 40 yet!!!!

Just thought I would share my experience

Kaz

 

[SHESCOOBY]

Hey yes having diabetes does suck but there is always someone else worst off than yourself.

I have a friend at the moment who is riddled with cancer and the treatment has done nothing
so having diabetes and the problems i have are nothing to what he is going thru.

Kaz

 

[nat5282]

I hate Diabetes , it has to be one of the worst conditions to have.
The link to the NHS site was shocking. Cutting the eye out? Jelly?
Life is just one cruel joke sometimes

We should all fight and take care of ourselves but I would rather have a different illness. Diabetes
is such a strange illness/disease/condition (not sure what term to use)as it is effected by everything we do.
I've never smoked and don't drink ,I don't understand people who don't
take their medication as it amounts to suicide in the long run.

If I had to get a disease then I wouldn't want any other than what I have now. Type 1 for 24 years, diagnosed at aged 3 back in 1985. I have had my fair share of problems relating to diabetes - most recently Diabetes Neuropathy in my left eye (extremely rare apparently) caused the 6th nerve in my eye to be paralysed for about 6 months and caused double vision - hospital were useless at first until I kicked off and demanded answers as to what was happening to me. I couldn't drive (was told by the hospital I could but I didn't feel it was safe when wearing a patch over my eye), it affected my work but everyone worked with me and helped me. My vision is now single again but it's not as it was before the paralysis. But I worked through this like I will with anything else that may crop up for me. The key is to not sit back and wait for the doctors to pull their fingers out their behinds when deciding what to do with you and thinking of the costs to the NHS while we have the potential to deteriorate rapidly. Keep on at them and don't let too much time go by.

As for it being the worst conditon to have - that statement is so wrong, would you rather have cancer? My mam has recently been diagnosed with cancer and cannot be cured of it, is going through chemo now to try and shrink the evil things inside her, she feels ill, can't eat very well, lethergic, is 55 and a shadow of her former self, has to take countless amounts of drugs just to get through the day, the list is endless - that is the worst "conditon" "disease" to have. Me and my family could only have dreamed that she be diagnosed with diabetes and not cancer - but no life has to be cruel. I thank myself lucky and hope that diabetes is the only thing I ever get diagnosed with!!

I'm sorry if some people reading this don't agree - but i'm sure those of you that have dealt with cancer will understand where I am coming from as unfortunately cancer seems to crop up far too much.

Remember - you rule it (diabetes), don't let it rule you!!!

Thanks. :?

 

[sedge]

I'd just like to say that I have one tiny spot of 'background retinopathy' on one eye which hasn't worsened in at least 15 years. It was first found at opticians and at the time (pre-retinal photograhy!) and the Endo then in charge of us said that the O had got better eyesight than him! I thought that was pretty hilarious because he was the one who suggested that partic optician to me I said I know you won't recommend anyone but I haven't aclue locally and he said 'Well I go to see Mr.. at ...'

We subsequently got a a nice new young D Consultant who could see it, I subsequently moved and used to have to go to eye hosp for exams, then the mobile photography service started. Recently O told me I have the start of a cataract on the one eye - I asked about it last week when I had the photos taken, so he took 2 of the fronts of my eyes and voila! - both eyes - but right on the outer limits of the eye surface nowhere near my field of vision.

These looked like little bubbles (to me) and i'd say, pretty colourless. So It could be that maybe? Anyway, they all agreed there was no need to do anything at all at the mo. I was bit scared I have to say but as due for the photography within 2 months of the O visit, was quite happy to wait and see.

All I'm saying is - certainly I have no intention of going blind, thank you. If summat gets worse then we'll see - I do as much as I can to prevent it although I can and do fall off the wagon. And FWIW in all my 36.5 years of having T1 (and not for want of trying!!!) my HbA1c has never yet EVER been below 7.3. I was much more worried about the violent swings that stress brought for 18 months recently - thank the Lord we've got that cracked now.

I will continue to try and get it down lower - I'll never stop trying!

 

[Anniebell]

Hi! Recently was told I have "background diabetic retinopathy". I have been an insulin dependent diabetic for 37 years and always pretty well controlled. My HbA1c is usually around the 6.3 level. This made me a bit depressed as I thought I was doing so well having diabetes for so long with no apparent complications. However, if I must have an incurable disease then I would choose diabetes. You can live a relatively normal life so long as you keep a check on your BG levels etc. I have a friend with MS. She is really scared, in a wheel chair and unable to write or do anything much for herself. She used to be a violin teacher, but can't even pick one up now. Yes, I'd much rather be diabetic thank you!

 

[ShyGirl]

 

[saz1]

I didn't realise your situation has been that bad. I think you should speak to your gp and ask to access a counsellor perhaps just to help to get your mind more balanced. I had a few sessions after losing my best friend quite tragically and was very dubious. But it was very helpful to talk to an outsider and break the downward spiral that was happening inside my head. I know the thought of blindness is petrifying but there is so much to live for!

 

[bonerp]

I'm not sure councilling is the answer - its like shutting the gate after the horse has bolted. If we had access to information from those in the med profession that terrify us with scare stories then we could make an educated decision about how strictly we control BGs and stick to treatment.

I was thinking about this walking to work this morning after having more laser yesterday. I remember when I was younger (I'm now 37) the docs used to say 'if you dont get good control you'll go blind.have complications/my leg would drop off etc'. I was like 'yeah cool scare tactics'.

Wouldnt it be more useful to those of us inflicted with this cr*p to say 'ok poor control will result in diabetic retinopathy/nerve damage and this is when the eye develops new blood vessels and may bleed - treatment is this and long term prognosis is that'.

Now I know docs have targets but believe me, if I understood back then what could happen (and what has happened) then would I have done things differently??? GOD YES!

Quickly brushing over the possible complications doesn't help younger people make a positive change to their life. I would love to have a chance to sit down with younger kids that have this disease and maybe help them understand what they could do different to me for a better long term prognosis. The NHS would then save money long term and people wouldnt need antidepressants and / or councilling. Sorry I'll get off my soap box now. I just hate the way I've had little understanding over the years. Nowadays I suppose info is easily available online but as stated above, who knows whats safe info and whats not. For goodness sake you can go onto any supplements shop and buy wonder pills for everything. I shouldnt wonder that younger people now will take less care than I did cos - 'they'll be a tretment just round the corner'!

 

[saz1]

You have a very valid point there but we aren't talking about preventative techniques in this instance. I agree that the prevention and training should be provided instead of all these vague threats and variable advice that we seem to get. In this instance the info available has caused distress and any kind of health education isn't going to make a difference. Fear of exercise etc is quite debilitating and since we don't have a time machine, the problem needs to be tackled from now onwards. I was merely suggesting a possible treatment which may help with dealing with these dark thoughts. If you don't believe in counselling as a form of treatment, that is of course your prerogative but you shouldn't dismiss it for someone else. You can now have your soapbox back.

 

[bonerp]

i didnt mean councilling wasnt the answer for this instance - I meant as a long term proposition education would help stop this problem or possibly have a more positive effect and would have helped myself and others who have concerns because of what they have heard on the grapevine and internet. Sorry if that came across wrong - badly worded. I'll wind my neck in.

 

[tasha]

Right Siobhan and Shygirl,

there are a alot of scare stories on here. I know that this forum is for sharing but it was pretty obvious from your post that you were looking for reassurance not more worry!

I have been in exactly your shoes regarding your eyes. I am 28 and have been T1 since I was 10.
My control is good now, but during my late teens and uni days it slipped. 3 years ago they found mild retinopathy in my right eye. I too was petrified and vowed to sort myself out-and did!

My next visit brought bad news. The doctor explained that it was often the case that improved control can sometimes deteriorate retinopathy and that I would need laser in my right eye. I broke down and became quite hysterical! The poor guy didn't know what to do but kept reassuring me this was not going to end badly. I was a mess and unfortunately on my own in the hospital at the time.

I had the laser a couple of weeks later (the b*****ds lost my notes and made me wait in the waiting room for the surgery all day. I refused to leave until they did it). It WAS scary but not nearly as bad as I imagined. I explained to the young woman who did it how scared I was and she explained that she was only performing minimal shots of laser and it would not affect my vision at all.

She was right. Now, over 2 years later my retinopathy has improved greatly. Any spots have now disappeared and it all seems like a bad memory. The doctors assure me that if I keep my sugars in check that everything should be ok.

I just want to reassure you that even if your yellow spot does progress slightly-(your good control of your BS will prevent this)-it is NOT the end of the world. I am living proof that this is not going to be the end of the world for you. I know that it seems awful right now but looking back from my position it really is something you can deal with.

Take care and let us know how your appointment goes.

Oh and your comment about exercise. Since my 'diagnosis' of retinopathy I have exercise regularly. Regular exercise will help lower your BP which will of course help. It will also help with BS control. It would be (in my opinion) be pretty unusual (or even impossible) for your eye to suddenly bleed because of a raised BP in exercise when you have only been diagnosed with a slight spot on your retina. You will need to have many other problems back there to have to worry about that!

 

[ShyGirl]

 

[ShyGirl]

 

[ShyGirl]

What a cruel joke

 

[Bubsy Malone]

I know that feeling, my mum has retinopathy and cataracts and is on the waiting list for an operation but she's been told the Opthalmologist is 6 months behind schedule! She is under a lot of stress at the moment, her big sister has terminal cancer and has been moved into a nursing home. Unfortunately, she lives up in Scotland (we live in the Midlands) and since my dad died no-one in our immediate family can drive. In the meantime, her eyesight is getting worse because of all the worry, which is making her feel even worse. Vicious circle or what!

 

[IanD]

Recent retinopathy screening photos have not shown signs of retinopathy. My 3 1/2 year low carb diet appears to have reversed the deterioration.