absolutely gutted

[curlyheadfreak]

I have just opened a letter from the eye screening people telling me they have found "evidence of early diabetic changes"

I am so gutted. I have only had type 1 2 1/2 years and I have always had excellent hbA1cs - currently 5.6. I'm always the "star patient" when I go to the hospital. So why has this happened so early??? I was under the impression from the optometrist that they do not expect to see changes for around 10 years in type 1s. And I am really, really annoyed that when I went for the screening and we were looking at the photographs, I was told that everything was looking absolutely fine :evil:

I am so scared of going blind. I think I would rather have any of the other complications.

I don't understand what I have done wrong, I am such a "good" diabetic and I try really hard with it.

Sorry to moan but I need to vent and I can't talk to my family because it will ruin their Christmas.

Can anyone give me more information about what "early diabetic changes" might mean and if there is anything I can do to reverse it/prevent it from getting worse?

Hope everyone here has a good Christmas!

 

[kalfwood]

I cant answer as to why it has happened so early, but maybe it's the way things are just meant to be. Your Doc is probably the best person to talk to regarding this.

I understand your feelings though, but it's not the end of the world, and as for going blind, my own experiences taught me that this is nothing to be worrying about.

My eldest (now 9) was about 2 years old when I was told I had complications with my eyes, commonly known as leakage it seems. My control wasnt bad but neither was it perfect. I came home that day distraught, my only thoughts were how I was going to end up blind and not see my daughter grow up. I actually sat on the edge of the bed crying my eyes out, with my wife doing her very best to comfort me.

However, I spent time with the nurses at the clinic and went through all aspects of my diabetes to tighten up the control, whilst also attending the eye clinic on a regular basis so that they could monitor the condition. I did everything by the book but in the end I had to have laser treatment to stop the leakage.

I had laser treatment in both my eyes roughly 3 years apart to stop the leakage and to this day it has done the job perfectly, with no reoccurring leakage in either eye. I'm the happiest man alive now after that fateful day when I was told I had problems.

I think I need glasses now but thats more the fact I am getting on in life... :roll:

Please try not to worry about it and I hope letting you know of my own experiences in this area will bring you some comfort.

Have a wonderful Christmas...

Ali

 

[veggienft]

.
I'm very sorry you are facing this. Type 1 diabetes is an autoimmune disease, and is closely associated with other autoimmune diseases. When you get a chance you can ask your doctor what causes type 1 diabetes. From what I can tell most doctors tell patients technical aspects about the disease, and try to leave patients with the impression that the doctors answered the question.

You are in the land of theory. If you want to slow autoimmune progression, you should to be willing to trace causes and experiment with treatments. I think it's quite possible among T1D patients that eye damage is no more tied to glucose levels than it's tied to immune attack ......same as the pancreas attack.

I don't know how you're arriving at acceptable blood glucose levels. But as a celiac and LADA sufferer, I think the autoimmune attack is facilitated by a leaky gut. Intestine wall permeability can cause problems besides elevated blood glucose. Leveling blood glucose would go a long way without stemming the immune attack.

We can talk further if you're interested.
..

 

[curlyheadfreak]

thank you...

kalfwood, I'm sorry to hear you have had eye trouble, but thank you so much for posting your experiences - it has helped. I am feeling so scared and worried. I am only 30, I've only had this 2 1/2 years and it just makes me so frightened about how I will be in, say, 20 years time.

I will be down the diabetes unit ASAP to try to figure out what is going on. I thought I would get quite a few years complication free but this has rammed it home big time that diabetes can totally ruin you :shock: . But to be honest I don't know what the hospital can realistically tell me as I have always taken my control really seriously and put diabetes before everything else. I think that's why I'm so gutted - if I'd had bad control or not taken it seriously then at least I could understand why this has happened and there would be a lot of scope for improvement. As it is, my hbA1cs have always been around the 6 mark, sometimes under, sometimes a tiny bit higher. Of course that means there is still some room for improvement but it's not like I've been reckless! I've attended all my check-ups, done DAFNE, I eat incredibly healthily - like making fresh vegetable juice for breakfast and all (lower carb) meals from scratch kind of healthy - I exercise, I have excellent cholesterol and blood pressure and BMI of 20. I don't know what else I can do!!!

Has anyone here managed to reverse eye problems, for example got a letter like I have and then the next time they have been screened been given the all clear again?

 

[jopar]

curlyhead

The letter is from screening not an eye specialist... The screening department are generally over cautious...

I see that you have done DAFNE, was your blood glucose unsteady before this? If you've tightened you blood glucose control quickly this can cause problems with eyes, but in general when it happens the eyes do settle down without any lasting harm being done...

Diabetic changes in the eyes doesn't mean that you will end up blind, in fact less than 5% of diabetics will suffer serious impairment of there vision and this figure is getting better, due to several factors both on the medical treatments available if things do go wrong, and our own ability to control our diabetes a lot better...

 

[iHs]

Hi Curly

I agree with Jopar and also think from my own experience of having background retinopathy in one eye back in 07, that although it's important to tighten up control, you've got to be careful at just how quickly you do this. If you have gone from having an a1c in the mid 6's which is excellent by the way, to 5.6 within a very short space of time, then you will get some changes to the eye when it is scanned. This doesn't mean that you've got retinopathy needing laser treatment etc.

Try not to worry over the letter. Sometimes, eye scanning machines can and do make mistakes. There was an article on this sometime ago featured in 'Balance' magazine. It made interesting reading.

By the way, my background retinopathy did clear up just by gently tightening up, testing more frequently and taking 100mg thiamine tablet every night.

 

[curlyheadfreak]

thank you everyone who has posted, you have really helped to calm me down.

I have stopped being hysterical now

Sorry...

I am still gutted deep down but I guess there's nothing I can do except get on with it :wink:

Best wishes to everyone

Claire

 

[Katharine]

Whatever you do Claire, keep up the good work with your blood sugar control.

All the best,

Katharine.

 

[fergus]

Claire, the very best odds available on controlling and reversing eye problems come with good consistent bg control. I've had the 'early diabetic changes' letters too, but my last test returned a completely clean bill of health. Try not to worry and keep up the good work.
All the best,

fergus

 

[ShyGirl]

By the way, my background retinopathy did clear up just by gently tightening up, testing more frequently and taking 100mg thiamine tablet every night.

What is 100mg thiamine and who put you on it? I've read about Pycnogenol but haven't decided what vitamin/supplemnet to buy yet.

 

[iHs]

Hi Shygirl

No one put me on thiamine (vitamin B1). I put myself on it because a report came up about its use in preventing complications and dealing with them, approx 2 years ago.

If you google Warwick, diabetes, thiamine - you will find all the info you need.

So far I feel it is doing its job.

My friend who is on metformin 3 times a day and diet, had background retinopathy in both eyes in 07, also started taking thiamine 100mg per day. Within a year the background retinopathy cleared :shock:. This was not due to bg testing (he doesn't do them) or eating better, it was due I think to the thiamine :mrgreen:

 

[ShyGirl]

Hi Shygirl

No one put me on thiamine (vitamin B1). I put myself on it because a report came up about its use in preventing complications and dealing with them, approx 2 years ago.

If you google Warwick, diabetes, thiamine - you will find all the info you need.

So far I feel it is doing its job.

My friend who is on metformin 3 times a day and diet, had background retinopathy in both eyes in 07, also started taking thiamine 100mg per day. Within a year the background retinopathy cleared :shock:. This was not due to bg testing (he doesn't do them) or eating better, it was due I think to the thiamine :mrgreen:

Thanks for the information , I think i'll give it a try..

 

[ShyGirl]

Thiamin is in my daily vegan vitamin pills. 2.5 mg. Is that an ok dose ? I should I buy different ones?

 

[paul1873]

Of all the complications, sight-impairment is the one that really bothers me. I’ve had this paranoia for 25 years and fingers-crossed haven’t needed any laser treatment yet. Are you taking medication for cholesterol? I don’t have high cholesterol but I’ve been taking medication for years … popping a pill is hardly a grief whilst stabbing yourself with a needle IMHO. At one point it looked like they wanted to do my first laser treatment (about 3 years ago) and my eye consultant wrote to my doctor to double my statin dose. Since then they’ve held off with the treatment although I visit them every 4 months to keep tabs on things. They say it’s improved and stable … woohoo.

This is what I take:
wikipedia.org/wiki/Atorvastatin
More specifically lipitor.com/content/index.aspx

Also not sure I’ve seen this mentioned. Maybe you were undiagnosed for some years and damage could have been done then???

Good luck!
Paul

 

[goji]

What the screening people say and what's actually going on can be two different things.

The screening people told me that I had R2 level retinopathy in one eye (the other eye was apparently perfect - they said this was odd) but a consultant opthalmologist who rechecked my eyes, said he couldn't see anything but some mild background retinopathy.

I have been taking benfotiamine 150mg for a few months and have just bought some Pycongenol.

For anyone who's considering the Pycongenol, be careful as it really lowers my blood sugars - I ended up having a big hypo the first day I took it!!

I'm having my eyes checked again by the opthalmologist in 6 months so i'm hoping to be able to see if the supplements have made any difference.

 

[badmedisin]

I can't believe they tell you that in a letter! They should tell you in person so they can give advice and reassurance. Have you been to a proper eye doc at hospital or just the screening they do at the opticians? I've never done the optician screening as I've always had to see the hospital opthalmologist since I was a kid. Comes as standard with normal diabetes checkup. I've had type 1 for 22 years and it's never been that well controlled, so I've been lucky. I've had background retinopathy for maybe 10 years and it's only been the last two years when they found proper bleeds in my right eye and started doing laser, which mostly seems to have sorted it. Laser is nothing to worry about, just take painkillers first cos it'll give you a headache. But now that you know about your background retinopathy you are in a position to monitor it and get lasering as early as poss if necessary, so it's much less likely to get to the stage where it affects your sight. Do try not to stress cos that's never good for your health. Sounds like you're doing everything right so just keep up the good work