Diabetes complications are real!!

[noramaria]

,Hi, this is my first posting on this Forum even though I have been an avid fan for over 2 years. I am 57 yr old female and am Type1 for 30 years. When I was diagnosed I was sent home and told to take some sugar if I felt nervy or shaky. Over the years I picked up some more information but not enough to keep good control so 12 years ago I developed Retinopathy and after all the laser treatment they could give me and a vitrectomy in both eyes and 2 cataract ops I went from being almost blind to having quite fair eyesight. In the meantime I developed end stage renal failure and was on home dialysis for 7 years waiting for a Kidney/Pancreas transplant. I connected to the machine every night for 10 hrs. I then received the transplant 3 years ago and within days I lost the Pancreas and was ill for a long time afterwards. I spent 8 months in hospital and now have an Illiostomy due to bowel obstruction but I have now got my life back and I intend to make the most of it. The Kidney is working brilliantly.

When I recovered I searched the internet for information and came upon your brilliant forum. I would even say it has saved my life. Last time I saw the dietician she remarked on my great knowledge of the illness and I owe all this to this forum. My bloods are now excellent and I rule the Diabetes instead of the other way round.

Sorry for the long post. Hope this makes a difference to someone and make them think about their control.

 

[hanadr]

Hi Nora
my T1 husband, also after pretty poor care over the last 35 years. Has multiple complications. Retinopathy, neuropathy which led to 2 Charcot feet and kidney disease.
these are DEFINITELY REAL and unpleasant.
It doesn't help anyone when It's assumed that the diabetic didn't take care of himself. My husband and you were given inadequatee advice in the past Nothing can repair some of this damage,however, its effects cam be kept under some sort of contrrol by STRICT blood glucose control.
Hana

 

[Sid Bonkers]

Hi noramaria and welcome to the forum, glad to hear you have your life back

 

[Anonymous]

Hi noramaria.

I've been T2 for just over 3 & a half years. I was told 2 days ago that I have 'background retinopathy'. As if my world didn't crumble enough when I was told I was a diabetic, it certainly did when they told me this. I've been crying for the past 2 days, feeling that I've 'had it', so scared I can't even take on what is going on around me, because nothing matters anymore. I've been sat here since 3am - woke up, couldn't go back to sleep. I came on the forum, clicked on this one, and saw your message, and for the first time felt a glimmer of hope, as I read about u coming through your retinopathy and have been left with some eyesight. When I was told I just thought 'wel that's it... I'm going to go blind!' But now I can hope. I can't understand though why everyone automatically thinks people get this because they have'nt managed their sugar/diet properly. As soon as my Metformin had stabilised my sugar 3 months after being diagnosed I have always kept it low. My GP and diabetic nurse are constantly telling me how good it is, so I let myself go into what I know now a false sense of security, thinking I wouldn't get the complications, but shock horror, I was wrong! So when I was told I have retina damage I just kept screaming inside and asking myself 'why? How could I have got this when my sugar has been so well controlled?' Wel, I know differently now. It's told me now you're not immune from all the complications just by looking after yourself. I'm really pleased for you that you have come through the other side. Hope I do.

 

[noramaria]

Hello Jolie. I am sorry to hear of your recent diagnosis and I can understand the worry you are experiencing. I actually worried more about my Retinopathy than I did about the Renal Failure!
I was actually experiencing many bleeds at the back of the eyes and I was almost blind at times but it looks as if your problem has been caught much earlier. I would expect the prognosis for you is very good and a lot can be done now to stabilize your sight. The main thing for you to do now is keep a very strict watch on your blood sugars and keep all your eye appointments and you may even be able to reverse the findings. It is possible you may have had Diabetes a while before you were diagnosed.
Please try not to worry too much as this can affect your BG levels. Best wishes.

 

[Anonymous]

Thanx noramaria. No I I didn't have diabetes before I was diagnosed. My GP was doing blood tests on me every year as I have hormone problems and he always did a sugpar test too. The 2005 + 200m sugar tests came back normal, so it was a shock when only months later, in February of 2007, my sugar was 12.8, and after the blood glucose test - 19.

 

[Anonymous]

Don't know how I put '200m' down! Anyway it should have been 2005 + 2006.

 

[Jude]

Hello Joely

I had my yearly eye screening last month and was told that they can just see some retinopathy developing but at the moment it is not needing treatment as it is very slight. I was more dismayed with this information because I struggle so much with my glucose numbers and now I am getting complications setting in. Anyway the technician explained to me that if/when it needs treatment they give laser treatment which halts the progression of the retinopathy.

Jude

 

[Anonymous]

Hi Jude.

Sounds good about the lazer. Give's me some more hope, as I'm still not coping well with the news. And, with me just gettin news in letter I didn't have anyone to explain it to me.
Here's good luck to the both of us then.

 

[fifi23]

Hi, new to forum. Am type 2 since last year and very confused about advice. Am on 1grm twice a day metformin. Doctor said dont bother to test and dont worry about the fact I have diabetes. Am seeing nurse for 2nd time tomorrow since diagnosis and would welcome some advice on what to say. When I saw the post about complication even though sugar was kept low I am now really scared as it seemed to me that what I have is not very serious. I am very addicted to chocolate and when I try to give it up I get really shaky. I brought a blood monitor and found that my sugar 1st thing in the morning was 7.5 then one hour after some porridge it was 12 I am not sure what this means and when I mentioned it to GP she agains said dont worry. I must admit my eating is not good at all have been very very depressed and have a very stressful busy job so regular eating is also a problem.

 

[anniep]

I don't think your doctor is giving you very good advice if they are giving you the impression that diabetes is not serious and saying not to worry when your BG is 12.

Many of us can't eat porridge at all because it is too high in carbs and by the sound of your reading after porridge it looks like it is too much for you. Your doctor should be advising you on how to deal with 12 and not dismissing it!

Read the advice for newly diagnosed on the site, the figures to aim for are there and as you have meter test after everything to find out waht you can tolerate and what you can't. Cut back on all of the starchy carbs not just the obvious sugar.

And read your way around the forum you will get the hang of what we all keep going on about with carbs. But to start with it is easy to increase the amount of veg and meat in a meal and leave out the spuds/rice/pasta. Try eggs and meat for breakfast instead of porridge or toast.

Keeping your BG low is the best way of avoiding complications, my mum was insulin dependent for nealry 40 years, and when she died at 80 she was complication free. But don't be fooled by anybody downplaying the seriousness of this condition.

If they continue to do so it might be worth considering changing your doctor

 

[Anonymous]

Hi noramaria.

Still trying to get over the shock of getting this background retinopathy. Spoke to my DN on fone today and she said it's in my left eye but nothing in the right. I wondered if you would answer me a question please?
Well, yet another thing I can't understand is, although I've only had this since after January, I've already started with eye bleeds! I see it every morning when I wake up. I've made an appointment with my GP as I think he will have to send me back to the eye specialist. He can't leave me for a whole year til my next eye screening with my eyes bleeding every day. Thing is though I scoured the net finding out about the eye bleeds, and they all say that you see it floating about right infront of you and it obscures your eyesight, but mine isn't at all like that. When I first open my eyes I see red dots on the walls, but the furniture etc., looks 'pinky'. My eyesight is otherwise perfect. There is nothing actually infront of my vision, no blurriness. When I look around the room everything is at it shud be. It's just as if someone has been in and painted red dots on the walls.
After about 20 to 30 seconds the dots turn brown then quickly disappear. It's odd also because since it's been happening I'm getting 'bruising' in the back of my right eye but nothing in the left.
I'm also seeing the blood with both eyes, as I cupped each eye to test it.
What did it look like when you started the bleeds?

Joely

 

[KimSuzanne]

Hi Joely

I haven't posted for a while but I saw your post and thought I'd answer as I ahve retinopathy in my right eye. My eye bleeds generally wold appear as black dots that last longer than what your describing in the mornings as the body reabsorbs the bleed, it will block the part of the eye where the bleed has occured until it reabsorbs. Do you have the number for a local eye hospital or the number for the consultant's secretary? as they may be able to give you some advice about what it is and whether you should see the consultant so you don't worry as much about it? I know thats easier said than done, I'm only 27 and had numerous lasers and surgery!
If your vision is good the rest of the time thats a great sign but its better to be safe than leave it a whole year. I hope this helps and if you have any other questions let me know!

Kim

 

[Anonymous]

Thanx Kim, for replying to me.

It's so devestating isn't it when your told you have this. I just can't cope at the minute. My family are being really supportive. I think the sooner I c the eye specialist the better, then I'll find out where I stand with this thing and the bleeding. I shud think he will give me another scan and see it for himself. Did your black spots seem to be on the things around you, like mine?
Still can't understand why I've got the bleeds so soon after being diagnosed with it, but this is just 1 of the many things I need to ask my specialist.

Joely

 

[samsgran]

Type 2 just over 12 months now, and recently had 2nd retinal photograph done and have been told there is some diabetic damage to the eyes. The optician told me I was on the lowest rung of the ladder, so nothing to worry about until I get half way up the ladder, when I will receive treatment. Well I am worried. I think my diabetes is well controlled by slow release Metformin (1 x 1000mg twice a day - the others caused chronic diar(can't spell it).), Sitagliptin once a day, Ezetrol to help keep the cholesterol down (statins caused too many problems in my legs). My morning bg is between 6.0 and 6.4 (is this OK?).
I have been trying to follow the low carb diet as discussed on the forums, but do fall by the wayside with the odd treat. Basically, what will be the effect if my eyes continue to be damaged? Is blindness the end result? Can the damage be reversed?
Have just read the message from Joely and can sympathise totally with her feelings on this matter.

Samsgran

 

[Bluenosesol]

Hi Joely,

I went along to a meeting of our local DUK support group. The woman responsible for managing diabetic retinopathy from our PCT gave a talk. She said that the latest treatments in association with annual retinal photography meant that incidents of blindness due to diabetes is becoming a rarety.

I noted this comment on the iternet

There are three major treatments for diabetic retinopathy, which are ''very effective'' in reducing vision loss from this disease.

In fact, even people with advanced retinopathy have a 90 percent chance of keeping their vision when they get treatment before the retina is severely damaged. These three treatments are laser surgery, injection of triamcinolone into the eye and vitrectomy.

The article also states that bg control and bp control are also important to reduce risk along with tobacco avoidance.

All the best - Steve

 

[Anonymous]

Thanx Steve.

Your comments are appreciated. I'm slowly coming to terms with the retinopathy. I force myself to research it as much as I can, and it is helping me to understand what is involved, and my fear isn't as strong now. I think it's just getting over the next hurdle - my next eye screening, which isn't until next August. I just hope it hasn't progressed much.

Joely.

 

[hellobear]

They sure are!

I have been type 1 for 13 years now (I was diagnosed at 13)

I left home at 16 and went through a major rebellion to everyone and everything. I used to think about the diabetes complications but I thought they were something that would happen a lot later in life (like 70s or 80s) and used to shrug it off as not worth worrying about.

Now I am waiting on an appointment for laser treatment as I have a bleed behind my right eye. My left eye has always been bad (its a lazy eye) and I have worn glasses since I was 4. With my left eye being almost useless, and now my right eye in danger of becoming worse... thats scary!

Over the last 6 months I have managed to regain some control over my sugars. I have also managed to lose 2 stone in weight through changing my eating habits. I also started on metformin as well as the insulin as I was having to take massive amounts for the smallest meals with hardly any carbs. Now my daily insulin doses have almost halved. I am pleased with that and hope I can keep it up. Hoping the laser treatment does some good (I see white spots, have floating things in my vision which makes it difficult to read)

To anyone out there who thinks they are too young to get complications from diabetes... please think again. In the end I had to figure what was more important... loads of cake and chocolate every night, or being able to see, read, work on the computer. It wasnt a difficult decision!

Well I hope you all get on ok with your laser treatment, I will be pleased to get started on mine, it is the waiting that is making me more nervous.

 

[gingercat]

Hi everyone,

I have been following this thread with interest. I was diagnosed with T2 in september 10. I am still poorly controlled but that is due more to my inability to accept this condition and realise that the medication I am prescribed will help prevent complications. My BG is never below 19mmol/l throughout the day; fasting seems to sit around 16mmol/l.
My mother had T2, along with glucoma (which we think was heredity as her mother had gone blind).
I have had a recent regularly eye test at the local opticians. I now wear glasses all the time. But one thing I am intrigued to know is:

Can an optician pick up these sort of eye changes during screening? I remember my diabetic practice nurse suggesting I hold off going to the optician until I had the screening for retinopathy...
I noticed previous posts talking about spots, floats etc. I have always had black floaters day and night, sometimes I would feel like I had to wipe my eyes almost to clear them. I have experienced flashing lights; rainbow colours and what I could only describe as my own personal lightshow. But because I have had these for so many years, I didn't worry about them because the optician always said the back of the eyes looked ok. So to me, they were normal! But of course they not..

Also, what has concerned me now, from reading the previous posts, is that I, stupidly, cancelled my screening which was scheduled for december (2010), because I didn't think I needed to go because I had just been to the opticians!!

I would appreciate any advice anyone could give. As I now realise concelling that retinopathy screening was not wise...

 

[Unbeliever]

I am so sorry for anyone worrying about reitnopathy certainly noone should blame themselves.
my retinal bleeding occurred when imy bg fell dramatically.
I have had a great deal of reatment since. not all of it successful but everyone is different.
just recently I have had a cataracts op and and feel that I am now on the way bacck up so don't panic if hings don't improve after any sort of treatment. There is generally something else which can be tried.
I wish I could feel as optimistic abou other aspects of my diabetes as i do about the retinopathy- and I speak as someone who could not even see the board at the eye exam.
Both eyes are affected but i was, to all intents and purposes blind in my left eye.
I acually had no symptoms apart from the sight loss until after I had been given laser treatment.
as with everything else the key is to find someone you rust to deal with if possible.
I have had more advice and assistance about my diabetes from my "eye eam" than I have from my DN.
Please try not to worry too much if you are told you have retinopathy. You may experience some sight loss while they are trying to find the right treatment but it certainly doesn't automatically mean blindness.
I think the element of blame occurs because HCP's believe the mantra that keeping maximum control means that complications won't occur. It can't be their fault so must be the patient's own faultMost find it difficult to cope with the fact that my macular oedema was caused by a rapid fall in my bg. As I was aleready attending the hospital for routine testing it is very well documented and everyone agrees that this was the case. i
I wish everyone who is worried about this condition a speedy improvement and effective treatment.
I know how difficult it is. Ihabe spent the last few years expecting total blindness. the worst time was when my right eye also had to be treated.. I had just come to terms with the possible loss of sight in one eye- but both! However I can now see that this was more in the line of preventative treatment performed early because I was already receiving treatment.
It is very difficult to describe this condition to others too. Almost impossible to explain that a new pair of specs will not solve it and that their shortsightedness, however irritaing is no the same thing.
So please do not despair and try not to worry. No that is not easy for me to say -i am familiar with all the emotions described above. I have had so much treament I am known to everyone in a very large eye dept and associated hospital wards.
i am as squeamish as the next person but have not found any of the treatment o be as unpleasant or gruesome as i feared. I hope this helps someone.