retinal screening results

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retinal screening results

Postby pazzpattie » Sat May 26, 2007 4:55 am

Just had my retinal screening results and I feel like I have been kicked in the stomach. There is damage due to my diabetes, no treatment needed at the moment, only advised me to keep good control. Any better than I am doing is impossible...I am devistated but I am a 38 year old type 1 for 28 years, it has to start taking it's toll. Just wanted to get it off my chest as " you" are my therapy.
Christine (pazzpattie)
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Postby Anne » Sat May 26, 2007 8:23 am

Oh sorry to hear that. There are a fee people on RC who have /have had
problems with retinopathy, maybe you could get in touch with them? We are all dreading the day when we will/have been told about complications sneaking in :(

Hugs
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Postby Kate » Sat May 26, 2007 9:38 am

Hi Christine -

I understand how you feel.

I got what sounds like a similar diagnosis "the first sign of changes but no treatment needed" after almost 20 years of D and it was the first time any of the tests had come back with anything and I was really freaked out. Eye test visits have never been the same, however, I am delighted to report that the problems have never progressed any further. The opthalmologist put me up to more frequent (9 month) visit after that first discovery, but then back to annual after that, and 5 or so years later at my last check things had actually improved quite dramatccally. My control has gone up and down a lot during those years too.

My response was totally, here we go, the beginning of the slippery slope, but I have since heard from a lot of people who get a bti of retinopathy and nothing more - and am pleased that this has been my experience. I have to say I am pretty anal about my eye screening now and ask lots of questions in my appointments so keep up with the screening, make sure you have an excellent opthalmologist who is able to monitor you well, and here's hoping you will be as relieved as I am in 5 years' time.

All the best, Kate

PS Some of this is addressed in a brilliant article Mel wrote by interviewing people who had had various dices with complications and I found really uplifting: http://www.d1.org.au/complications.htm
Last edited by Kate on Mon May 28, 2007 4:10 pm, edited 1 time in total.
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Postby pazzpattie » Sat May 26, 2007 8:06 pm

thank you so much for your posting that makes me feel a little better Kate and Anne.
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Postby LongRidge » Sun May 27, 2007 7:31 am

Hi Christine. With T1D, it can cause EVERYTHING (except cancers perhaps), so I try to consider how lucky I've been. My eyes are exceptionally good (except I can't see as well as some people) but I'm waiting for the next bleed and on eye-drops to reduce the glaucoma. My fingers are short and stubby which is a T1D symptom and I've had the carpal tunnels done. I've got no knee reflexes but I can feel my toes. I get chilblains everywhere .... on the ears is worst.... but if I keep warm they don't happen. And when I had the stent put in after the heart attack 10 years ago, I was told that it would last between 2 and 10 years. But so far my kidneys and liver are fine.
Unfortunately, with T1D, the only way to think that nothing is wrong is to not see the medical experts. Fortunately for your friends and relations you are doing the responsible thing.
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Postby Phil » Sun May 27, 2007 8:33 am

Christine

I can get where you are coming from here as I do have it a bit more advanced. I agree with Kate in terms of bisiting your optho. I think after 28 years then a few small signs is very bloody good! Just keep it monitored and ask your optho anything that you aren't comfortable with. There are no guarantees in life but (I am having a bit of a stab in the dark here) those who I have talked with who have similar problems to myself seem to be lots earlier in their diagnoses. I would take that as a positive for yourself and keep on going as you are.

All that said, I still remember when my doc told me I had the beginning of retinopathy. Felt like a kick in the guts and I didn't hear much after that. It can be a shock and places like here are good ones to come to find a sympathetic but informed listener.

Longridge not sure of the point of your post but it is not in the whole supportive in my opinion. A list of your ailments, out of any context, was not really addressing the original topic. I can attempt to put an interpretation on it that puts it in a supportive light but it is easily read as fairly depressing. It is difficult to get meanings down sometimes and I hope this is the case here.
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Postby LongRidge » Sun May 27, 2007 8:58 am

Phil, you are very probably correct .... but perhaps for Christine she needs to be aware that others have been where she is, that the world has not ended, that she has done the correct thing by checking with the medical profession ...... and that things are going to get worse - unfortunately they do, with age.
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Postby Kezza » Sun May 27, 2007 10:42 am

Hi Christine,

Sorry to hear about your results. Just echoing what others have already said - I got that "first signs of changes" result maybe 8-10 years ago. Last check was a bit over a year ago, and there has been no further degeneration. At one stage I was told it had gotten better if anything. So yeah, it's crappy, but it's in no way a sign you're headed for anything awful. Also, I agree with Phil - first signs after 28 years is bloody good, especially since your early years must have been pre- modern diabetes management! I'm 22 years now and got my first eye changes within 15 years.

LongRidge, things work less well with age for EVERYONE, not just diabetics. In this day and age, having had diabetes for a few decades doesn't guarantee you complications. Saying "things are going to get worse" doesn't really help right now.... they might not, at least not diabetes-wise....

Kerry.
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Postby Leni » Sun May 27, 2007 8:09 pm

Hi Christine,

Sorry to hear about your retinopathy. All I could think when I was told I had retinopathy and that it needed laser was the absolute worst, and I was on the edge of tears for weeks. The good thing is that you dont need treatment yet, you caught it early, and you can do your best (and the ophtho can do his best) to help slow down any progression. The treatments they have for retinopathy are getting better all the time, and with good glycaemic control there is room for improvement of retinopathy - I had laser on my left eye, and now (6 months after completion of the laser in left eye) both eyes have improved far beyond what my ophtho was expecting (he was getting ready to laser the right eye, but now doesn't think it needs it right now).
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Postby Bella » Sun May 27, 2007 10:02 pm

Longridge..... sorry to hear of all your problems.

I gotta say though, I've been T1D for 20 years now, and my brother has had it for 35 years, and my grandfather too, and I've never heard of 'stubby finger's' as being as a result of having T1D..... it sounds bizarre to me! Surely that can only be a hereditary thing???

I consider myself very fortunate, because I have never had any complications what so ever. I know that part of that reason is because I have always kept good control, but also because I have 'good genes', according to a recent study.
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Postby Catapult » Sun May 27, 2007 10:12 pm

Bella wrote:I've never heard of 'stubby finger's' as being as a result of having T1D..... it sounds bizarre to me! Surely that can only be a hereditary thing???

I've been reading about the discovery of insulin and D treatment recently, and I have read that some Ds did suffer growth retardation due to the lack of glucose control say 30-40 years ago. Of course they had to be diagnosed as children or teens in order for this to occur. I think it also happened to kids who got many steroids for asthma.

I consider myself very fortunate, because I have never had any complications what so ever. I know that part of that reason is because I have always kept good control, but also because I have 'good genes', according to a recent study.


I am interested in reading this study about good genes, can you post a link please Bella? I have always believed that good control is only a percentage of the complications development story.

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Postby Bella » Sun May 27, 2007 10:57 pm

OK Cat, I'll contact my endo and ask her where I can find a copy of the study. I'd like to read it myself, it sounds like a good read.

That's interesting what you say about the stubby fingers. But, I too am asthmatic and have had steroid medication since I was 5..... my fingers are actually very slim and long. People used to say I had 'piano fingers' when I was younger, which, hence encouraged me to learn piano!!
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Postby Catapult » Mon May 28, 2007 10:42 am

i was only diagnosed at 12 but hadn't gained hardly any weight or much height for the three preceeding years. and i definitely have stumpy fingers/hands (they are the kind that palmistry would say are very earthy). luckily the rest of my body grew ok (5'7") but my feet and hands are small in comparison. I take a size 7 ladies shoe.

thanks for trying to get hold of the paper Bella.

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Postby artemis » Mon May 28, 2007 10:56 am

I was dx at 15 and am only half an inch taller than you, Cat, and I also have small feet (narrow as well) 7-8 depending on the make. I have long fingers though. The feet, ankles, wrists are all smallish, but that seems to be a familial thing in Dad's family.
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Postby Kate » Mon May 28, 2007 4:13 pm

I'll raise that - I take a size 4.5 ladies shoe - never thought it was due to diabetes - in fact still don't! But each to their own....
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Postby Catapult » Mon May 28, 2007 4:32 pm

Kate wrote:I'll raise that - I take a size 4.5 ladies shoe - never thought it was due to diabetes - in fact still don't! But each to their own....


hey, you have tiny hands too! i remember your freestyle papillon post photos. but we don't know your height.

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Postby maccas » Mon May 28, 2007 6:55 pm

i got diagnosed at the age of 8 and coming up to 25 years with D and i have good fingers and feet (size8), I think people blame D on everything but I think your genes have plenty to do with it too

Christine yes it is a shock when they tell you that the complications are starting, I have had lazer on 1 of my eyes but they are stable now. All you can do is get the best control you can acheive and keep up the eye visits and its good to vent makes you feel better
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Postby Anne » Wed May 30, 2007 5:58 am

Christine,
It won't take your problem away, but I was told exactly the same today at a routine pregnancy 3-monthly eye check :(

I was not impressed by the ophthalmologist who kept asking if my 'medication had been increased by my doctor' (well, I am in the third trimester of a pregnancy and with full blown insulin resistance so yes I keep adjusting my insulin), then said it was minimal and might be reversible after pregnancy, ' once my blood sugar levels improved'. Actually they have never been as good as now but this is the first time I have any sign of complication. Not completely a surprise with my history of chaotic diabetes management, currently much better, but with the added risk of a pregnancy. .

She was very matter of fact about the 'minimal linear leakage' and told me to just have it checked in 2 months. I felt kicked in the stomach and amazed how she handled me.

I was thinking about your post when I left the hospital and hope you are feeling better.

Anne
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Postby pazzpattie » Wed May 30, 2007 7:06 am

Thank you all for lifting my spirits......Anne, I am thinking about you too. I am in the Uk (Newcastle) at the moment and you are the only reply from UK I have had!! I live in Italy and will be returning in two weeks. I have a beautiful 2 and a half year old daughter. Pregnancy is already so difficult, and then to be told what you have been told today must be so upsetting. Stay strong!! I am, with the help from this forum.
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Postby pazzpattie » Wed May 30, 2007 7:14 am

You know what is getting to me? the fact that I was told about my results in a letter, which gives no infomation or advice other than "try and stay in good control" (my last hba1c was 5.2). I have read all your replys and referances to BLEEDS.....how do I know if I am havving a bleed????What else do I have to look out for??????
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Postby LongRidge » Wed May 30, 2007 8:41 am

I'll start ..... but I've only had leaks. With mine they started as a thin line across my vision that went in and out of view, exactly like a hair getting in the eyesight. But it couldn't be seen in the mirror, nor by anyone without the opthalmology equipment. One of mine ended up as a black blob that floated across my vision, sometimes partially obscuring the view. With our small hospital, and maybe anyway, the capillary that has broken can't be nucked until the blood has cleared away in 2 or 3 months.
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Postby Leni » Wed May 30, 2007 9:18 am

Anne wrote:I was not impressed by the ophthalmologist who kept asking if my 'medication had been increased by my doctor' (well, I am in the third trimester of a pregnancy and with full blown insulin resistance so yes I keep adjusting my insulin), then said it was minimal and might be reversible after pregnancy, ' once my blood sugar levels improved'. Actually they have never been as good as now but this is the first time I have any sign of complication. Not completely a surprise with my history of chaotic diabetes management, currently much better, but with the added risk of a pregnancy. .


Hi Anne,

So sorry to hear about your diagnosis. As you know, similar happened to me, also during the best glycaemic control I had ever had. The normal course of retinopathy in relation to pregnancy is that it will improve after the birth - it's the pregnancy hormones that are causing the problems, so once they go the eyes tend to improve. If you can, try and get a referral to an ophthalmologist who has lots of experience with retinopathy in type 1s and pregnancy - I would have thought they would all have similar experience, but the comments you got were pretty dumb!

I know EXACTLY how you are feeling, and I had exactly the same experience (with god-awful ophthalmologists, but now I have a really really good guy my endo put me onto). Just do the best you can, and after the baby is born try your hardest to keep good glycaemic control - I know this can be particularly hard, considering your life will exist in 3-4 hour segments around baby's sleeping and feeding habits, but do your best... they say glycaemic control after the birth can have an impact on retinopathy. I wish I had known how important it was just after the birth, because while my control never really got BAD it certainly wasn't as good as I could have done. Feel free to email me if you feel like a chat, Anne.

Try not to worry. Just do your best, and enjoy your baby. Believe it or not, life will never be as simple as it is right now... babies add that extra element of challenge :) They really are the best thing ever though.
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Postby Anne » Thu May 31, 2007 3:43 am

Leni
apparently it is very small, what I was shown is like a little dark blob on the background of the retina, but it is there none the less. What I found rather odd was the way she talked to me about it, casual and like I was an idiot: it has taken me 3 years of hard work to improve my bgl and get pregnant, and my control is the best I ever got.

It is thank to your posts that I knew this was a risk I was taking, I was only given the usual 'may get bigger baby and other pregnancy related risks' talk, even though I go to a very expert clinic. I was aware that complications already present might get worse, and when I pushed for it, I was confirmed that the risk of unexplained late still births is still higher than in the general pop, but people avoid to be too specific. Mind you, in a way I don't want to hear too much bad news , it's enough to try my best without worrying like mad about all the 'what if...'?.

I must say the clinic I attend is actually excellent and I trust them completely. This ophthalmologist is part of the pregnancy and diabetes team but I had seen someone else before, not her. The way she talked was so odd and un-expert in her approach ('has your doctor increased your medication?' really threw me) that I was a bit confused. To be honest, my control has been so poor in the past that I expected complications at any times actually,but more before preg than now.

Christine,
If you want to meet at some point, Ingrid is in UK too, but quite busy with 2 babies at present:). Rose seems to be not too far either, so there are a few of us in UK.
I can't imagine anyone getting medical info by post, is this really happening?
I am just thinking of this tiny baby growing and kicking at present and doing my best to try avoiding making a giant, as well as doing what I can to limit the damage. Ironically, on the same day, I was told by the d team that I amdoing really well, bgl wise.

Thanks for your support. I am also thinking of other women who choose, or think about it, to take risks to have a baby. I always think of the risks for the baby born from a diabetic mother, but there is our health too.
Carpe diem
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Postby pazzpattie » Thu May 31, 2007 6:11 am

Anne,
You have made me remember something. I was told that Julia (my baby) had suddenly grown and was well over the average weight, and to change the seizes of the newborn baby grows\vests etc I had bought. I was in tears, she was due to be induced 2 weeks later. Julia, in the end was 3kilos 380g (7lb 7oz) an average seize. They can only estimate the weight and it is not accurate. I however gained 18 kilos! All on my stomach, my face looked thinner than what it is now....enjoy being pregnant.
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Postby LongRidge » Thu May 31, 2007 8:59 am

Anne, my Diabetes doctor always (I think) sends me a copy of any letter she has written about me to my GP. It's very useful to me as a check that I've understood.
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Postby Tony » Thu May 31, 2007 7:58 pm

Hi Christine,

I've had D for 35 years and have nearly always had bleeds in my eyes. They come and go. Been seeing the same Optho for 30 years now.

Everytime he's concerned I go back to 6 monthly screens. They've always cleared and I go back to 12 monthly. I've never known anything different. I always thought that was how it is ?


LongRidge. Never heard the Stumpy Fingers thing. I have long, slim Piano player fingers :)

Ciao,
Tony
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Postby LongRidge » Fri Jun 01, 2007 8:55 am

Tony ..... I've got good eyes and stumpy fingers, so I think I might be luckier than you :-((...... Leaks from the start of D .... yuck!!!!
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Postby Mel » Fri Jun 01, 2007 5:23 pm

I think there may be confusion in terminology here, I believe Tony is talking about the background retinopathy minor blood vessel damage that is only visible to an opthalmologist when he dilates your pupils and looks into your eyes-they have no impact on your vision at all. I think many people here (including you Longridge) talk about bleeds as the retinal haemorraghes of more advanced retinopathy in which your vision is obscured by the blobs of blood.

Anne I'm really appalled at the way your optho treated you and what's with the mantra of good control, it is so irritating. Not trying to tell you how to suck eggs but is your optho one who is experienced in dealing with diabetic eyes, I have found that the eye drs who specialise in retinopathy tend to be more compassionate and also have a better understanding of d than to parrot the control myth and would know that if you & your endo haven't increased your insulin during pregnancy then you have more problems than a bit of background retinopathy. THey also know that sudden improvements in control can worsen retinopathy and that genes and other factors can have a big impact on retinopathy, so they are more circumspect about parroting the control myth as the only cause and only cure for retinopathy.

I wish somebody would send some of these opthos on communications skills training courses.
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Postby Be11ydancer » Fri Jun 01, 2007 6:38 pm

Mel wrote:I wish somebody would send some of these opthos on communications skills training courses.


Maybe you could run a course for them ..........
You could put in a 'Shut Up About control' practicle exam during which you thump them soundly with a box of donuts every time they tell the mock patient to improve control instead of focusing on treating the problem at hand.
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Postby Mel » Fri Jun 01, 2007 7:10 pm

I think you're onto something there belly :)
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Postby artemis » Fri Jun 01, 2007 7:26 pm

I'll second that = a guy I went to not only thought he was God, he acted like he was. He badly needed a kick up the back side.
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Postby Anne » Sat Jun 02, 2007 8:59 am

Mel
This ophthlamo I saw was through a very specialised diabetic pregnancy clinic, that s why her approach shocked me- of course my insulin gets adjusted regularly, actually weekly at present by the d team , plus my own adjustments on a daily basis if necessary. My bgl control is tighter than usual but this has been a very gradual improvement, taken me 3 years to get there.
When I buy new glasses in town and the standard opticians can't stop themselves and check my retina when all I ask is my vision to be checked for the lenses, I can happily ignore what they say (but so far it had been always normal).

Longridge
I understand what the ophthalmo said, but it still shook me. I even saw the pictures of my eyes on her screen myself, with the change from 3 months ago and now and I can make sense of this.


I will let my endo know what I think of her eye specialist's way of breaking news. I am probably known to be an awkward patient anyway, plus I have the excuse of being pregnant so I can be even more stroppy than usual :)
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Postby Mel » Sat Jun 02, 2007 1:07 pm

This ophthlamo I saw was through a very specialised diabetic pregnancy clinic,


Maybe it was her first day on the job??? Hopeless.
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Postby Tony » Sat Jun 02, 2007 5:16 pm

Thanks Mel.

You're completely correct.

I think there may be confusion in terminology here, I believe Tony is talking about the background retinopathy minor blood vessel damage that is only visible to an opthalmologist when he dilates your pupils and looks into your eyes-they have no impact on your vision at all.


I guess that's what's hard in making personal comparisons on the forum. We're using the terms that our Endos , Opthos, etc use and they don't have standard terms to work to :)

I've learnt something and I won't use the term 'Bleeds' again. "Background Bleeds' might be better :) Or "Shut up"
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