1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2021 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
  4. Guest, stay home, stay safe, save the NHS. Stay up to date with information about keeping yourself and people around you safe here and GOV.UK: Coronavirus (COVID-19). Think you have symptoms? NHS 111 service is available here.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Retinal scan results frustration!

Discussion in 'Diabetes Soapbox - Have Your Say' started by secrettheatre, Apr 18, 2009.

  1. secrettheatre

    secrettheatre · Active Member

    Messages:
    30
    Likes Received:
    0
    Trophy Points:
    26
    I went to see my GP today (Friday) to get the details of my recent retinal scan, which according to the letter I received apparently showed some 'diabetic changes' (that's all it said - though it also stated that no action was necessary at present). I ended up seeing another GP, since mine was away, but he didn't have the details and told me, when I pressed further, to 'google' retinopathy. I'll repeat that: he told me to google.

    Needless to say I was not very impressed by this. In the end he said that if I rang in about a fortnight they would probably have some further details of the scan, or I might try contacting my diabetes clinic (which I'll do first thing Monday).

    I would really like to know what changes have occurred in my eyes, as this is the first trace of anything like a 'complication' I've had in the decade I've had diabetes (which has stimulated me into drastically improving my treatment of it). But surely I should be able to access this data more easily - especially since the scan itself was a month ago. Has anyone else had a comparable experience?

    I'm whining a bit in this post, but I'm feeling quite frustrated since I'd geared myself up for a long and involved discussion with my GP about my diabetes care (which is well overdue). And I got told to google...
     
  2. kegstore

    kegstore · Well-Known Member

    Messages:
    771
    Likes Received:
    3
    Trophy Points:
    38
    Often some of the first "diabetic changes" to be picked up buy a retinal examination or scan are what are termed as "cotton wool spots". These are small swellings in the surface of the retina that occur because of some degree of impairment in the blood supply to the retina. It's the stage before retinopathy has even started, so if you can get on top of the factors that may be causing the problem (blood pressure, good control), any further damage can be mitigated.

    My optometrist first observed these changes 16 years after diagnosis, and referred me to an opthalmoligist at the eye hospital. 12 years on and I have proliferative retinopathy, with around 6,000 laser hits in each eye, but my retinas are now stable, I still have excellent vision, and this is down to getting my blood pressure sorted (and the excellent care at the eye hospital).
     
  3. Panda

    Panda · Member

    Messages:
    9
    Likes Received:
    0
    Trophy Points:
    21
    I had a similar letter and was frantic as I have had diabetes for 41 years.
    I complained that it was shocking news to receive in a letter that you have changes.(consultant disagreed with me).
    I thought that was bad enough but I have just recently been for Retinal Screening again and again received a letter now telling me that I have Diabetic Maculopathy and may need laser treatment and will be sent an appt for the eye clinic within two months. I phoned my GP and my diabetic nurse to ask some questions but they didn't have any answers for me.
    The funny thing was that It said in the letter I should try to ensure my blood pressure and blood sugars were kept to normal levels. They were before I received this letter!!!!!!
    :roll:
     
  4. chrissieworne

    chrissieworne · Well-Known Member

    Messages:
    180
    Likes Received:
    4
    Trophy Points:
    38
    Hi

    I had my first retinal screening 3 weeks ago and the fella said very nonchalantly "oh that's interesting" I asked what and he told me I have birth mark, "like a mole" on one retina, then he said, "still, should be okay although they can turn nasty like any other mole" I wasn't told to google it but of course I did and nearly scared myself to death and convinced myself I was going to lose an eye!
    Am waiting for the letter with the results but honestly I think some of these so called professionals could explain things a bit better.

    Was the same with my ecg, nurse said "that's not tooo bad" what the hell does that mean.

    Enter the woman with the "intersting eye" and 2not too bad ecg" !! lol :lol:
     
  5. the_anticarb

    the_anticarb · Well-Known Member

    Messages:
    1,045
    Likes Received:
    272
    Trophy Points:
    103
    I have not been happy with the approach taken by retinal screening. When I went to be photographed the screener said things had got worse than last time but refused to explain further saying I would need to see the doctor. They should either just take the photo and not say anything at all, or if they are going to say anything be prepared to explain.

    I then got letter saying I had retinopathy (I already knew about this) and maculopathy (this was new).It was really insensitive to receive this info by letter but I phoned up the screening service and demanded an explanation of the maculopathy.

    Then I saw the consultant earlier this week and he said there is NO maculopathy at all! I know they have to err on the side of caution, and could understand if they said the damage was worse than it was or something- but to tell me by letter that I have a condition the consultant then says I don't have at all is just not right. I was really upset to think I had maculopathy, and relieved beyond belief to be told I didn't, but if they weren't sure they should just have said nothing and referred me to the consultant, saying they needed him to take a closer look or something.

    Anyway at least they have got the mistake the right way round, ie it's better than being told I am ok then later finding out not I suppose!
    So OP i share your frustration
     
  6. oojimmyflip

    oojimmyflip Type 2 · Active Member

    Messages:
    37
    Likes Received:
    6
    Trophy Points:
    48
    before I knew I was type 2 I was watching tv one sunday afternoon and believe it or not my eyesight just switched off completely, I was almost completely blind except to say for a few dark shadows in the room around me as I tried to move about.

    now the hospital eye clinic specialists didnt know what was wrong after nearly a whole day of testing but my optician spent a couple of hours looking at my eyes and knew what was wrong I had dry eye in both eyes.
    my eyes were so dry that when I blinked I scratched the surface of my corneas which eventually robbed me of my sight, it recovered with some special eye drops all back to normal except for the diabeties and its effects when sugars go high.

    my optician was brilliant he knew much more about my eyes than any so called specialists at the hospital. Now i dont have the yearly tests at the hospital pressure test etc it is done by my opticians they are brilliant and I get a photo of the back of my eyes to with a detailed explanation of how things are, the hospital wont do that for you.

    regards Nigel. :wink:
     
  7. LittleSue

    LittleSue Type 1 · Well-Known Member

    Messages:
    647
    Likes Received:
    15
    Trophy Points:
    58
    Where I live there's a new system where all diabetic eye screening images go to a central office for expert review. Stored centrally too so whichever optician you go to (from approved list) they can access/compare previous images. Sadly the digital equipment was only introduced here 1-2 yrs ago, whereas I lived in Bucks 10-15 yrs ago and they already had it then. Though the central interpretation is an improvement.

    I used to take home a copy of my optician's report to take to D clinic. Last year (under the new system) I didn't get anything - a result letter from central office would only go to my GP. So I rang the central office and insisted on an individual letter with the results, explaining that with nothing in writing the D clinic would insist on putting drops in my eyes and doing it again, on a work day - waste of effort and I'd lose a day's pay. They kindly sent me a letter. I suspect others did the same, as this year's reminder letter says results will automatically be sent to me, GP, D consultant and/or eye consultant if I have one. Its probably easier for this to happen for everyone than getting lots of individual requests for letters. Pester power does work sometimes.

    I find it condescending though that I'm not considered capable of making suitable arrangements for myself (given I'm asked when my eyes were checked at every GP or hospital appointment ). Managed perfectly well for 30+ years by simply remembering which month it was due or have it done digitally at the hospital. I'm not stupid, just diabetic. I know not everyone is so well informed or motivated about their condition, but it still seems patronising, especially with a mostly self-managed condition. If I chose not to have the screening that should be up to me, but I can imagine the fuss if I didn't have it done.
     
  8. hanadr

    hanadr · Expert

    Messages:
    8,157
    Likes Received:
    340
    Trophy Points:
    103
    I asked to see the images of my eyes and was pleased to see how normal they look. I have background retinopathy, but it's mild and improving. Retinopathy is only visible on enlarged images.
    Yes I do know what a normal retina looks like.
    Hana
     
  9. secrettheatre

    secrettheatre · Active Member

    Messages:
    30
    Likes Received:
    0
    Trophy Points:
    26
    Thanks for all the recent activity on this thread - I've been 'absent' for a while, but I'm back now. :D

    I still haven't had the full results of my screening. :evil: I saw a doctor at my diabetic clinic about 3 months ago (was just due to see the nurse, but asked to see a doctor) and he said he'd 'look into it'. Evidently he hasn't (I'm assuming this based on other things he'd said he'd do, but hasn't).

    So I'm still feeling somewhat frustrated. Plus my GP (I'm going off-topic slightly, so apologies moderators) has started on at me regarding my test-strip usage again - according to him I should be using 3 a day, 4 is sick. Currently I use 5 or 6 a day. He said he and 'the girls' (the clinic secretaries) are 'keeping an eye' on my usage. He also accused me of being 'obsessive' about my diabetes. Well that's just ****. Indeed, if I'd perhaps been a bit more obsessive about it over the last decade I wouldn't have developed retinopathy, however mild. To him I seem to be little more than an instance of a statistical mass. I wonder how he'll react when he learns I've changed GPs?

    I'm phoning my diabetic clinic first thing Tuesday morning. :twisted: :twisted: :twisted:
     
  10. secrettheatre

    secrettheatre · Active Member

    Messages:
    30
    Likes Received:
    0
    Trophy Points:
    26
    What exactly is diabetic maculopathy? I've heard of age-related macula problems, but never associated with diabetes. Is this another scary complication I should look forward to? :cry: :D
     
  11. cugila

    cugila · Master

    Messages:
    10,272
    Likes Received:
    98
    Trophy Points:
    118
    Hi secrettheatre.

    Diabetic Maculopathy.
    This condition is more common in older, non-insulin dependent diabetics, and is the most common cause of gradual loss of vision in a patient with non-proliferative diabetic retinopathy.

    This involves
    the breakdown of the blood–retinal barrier
    leakage of plasma from small blood vessels in the macula
    swelling of the central retina
    formation of hard exudates
    diabetic macular oedema
    does not cause total blindness o leads to severe loss of central vision (1)
    clinically significant macular oedema is
    retinal thickening and/or
    adjacent hard exudates that either involve the center of the macula

    Four types of diabetic maculopathy are recognised:
    cystoid:
    characterised by microaneurysms and haemorrhages but relatively few, if any, hard exudates
    the main feature is extensive macular oedema which if persistent, may lead to a lamellar hole at the fovea with permanent impairment of visual acuity

    focal - a background diabetic retinopathy, associated with macular oedema and surrounding hard exudates

    ischaemic - similar ophthalmic picture to cystoid and differentiated from it by fluorescein angiography

    mixed - exudates, oedema and ischaemia
    Reference:

    Frank RN. Diabetic Retinopathy.N Engl J Med 2004;350:48.

    Here is a link to a website which explains in more detail:
    http://medweb.bham.ac.uk/easdec/diabeti ... pathy.html
     
  12. secrettheatre

    secrettheatre · Active Member

    Messages:
    30
    Likes Received:
    0
    Trophy Points:
    26
    Thanks cugila, that's very helpful info. I appreciate it.

    Best,
    Chris
     
  13. the_anticarb

    the_anticarb · Well-Known Member

    Messages:
    1,045
    Likes Received:
    272
    Trophy Points:
    103
    Thanks Cugila, that's a whole lot more info than the screening people sent in their stupid leaflet accompanying the letter telling me I had maculopathy that I later found out I didn't!

    Honestly, I find the level of knowledge on this site by so called lay people far exceeds that of many a professional I have spoken to!
     
  14. barge

    barge Type 2 · Active Member

    Messages:
    26
    Likes Received:
    0
    Trophy Points:
    21
    i went for my test in august and was told the computers at the scanning center are being up graded so i am still waiting for another letter when to go for the test again my doctor keeps telling me i have not had the test this year has any one else had this problem
     
  15. kentishman

    kentishman · Well-Known Member

    Messages:
    53
    Likes Received:
    0
    Trophy Points:
    26
    After my annual retinal scan I received a letter saying I had a problem but no action was necessary yet.My optician, who is excellent, did a check and said it was so minute it was not worth worrying about and showed me on his computer. I think some experts worry patients with lack of explanation
     
  16. the_anticarb

    the_anticarb · Well-Known Member

    Messages:
    1,045
    Likes Received:
    272
    Trophy Points:
    103
    Absolutely - as I said previously, what is the point of the screener telling me it is worse than before but then when pressed for further info, saying I'd have to wait until I saw the doctor? If they need to screen it properly before they can make an assessment then just take the **** photo and shut up!
    I know I should be grateful a screening process exists, and I am, but I worried myself sick for two weeks thinking that I had maculopathy, then found out I didn't - so they definitely need to think about the impact on the patient of how they go about this.

    I suppose the benefit is that I know for sure I never want to be in that situation for real, so it's been a quite effective motivator to ensure I look after myself.
     
  17. reliable_richard

    reliable_richard · Newbie

    Messages:
    3
    Likes Received:
    0
    Trophy Points:
    21
    I have had a letter back from my annual scan that says I have background retinopathy but no action needs to be taken at the moment. I am very concerned about this. I am 21 and had type 1 diabetes for 10 years. My Hba1c level has been around 7.5 for the past 5 years or so, and my blood pressure is low. As many of you have mentioned, I dont feel there is enough specific information and would have prefered if they had phoned me to explain it more. I feel worried I might loose my sight or something :( ; I dont really know much about it. Anyone have some reassurance? Thanks.
     
  18. hanadr

    hanadr · Expert

    Messages:
    8,157
    Likes Received:
    340
    Trophy Points:
    103
    I just ask to see th pictures.
    Hana
     
  19. daffy1

    daffy1 · Active Member

    Messages:
    26
    Likes Received:
    1
    Trophy Points:
    23
    Ive only been dx for a few months and have been to the hospital for my eye screening. My eyesight had changed virtually overnight.I went to bed okay but when i woke up i could barely see beyond the end ofthe bed I got a letter within a couple of weeks explaining I had background retinopathy which showed itself as minor anyerismns (not sure how to spell that) and that i needed no further treatment at the moment but must make sure i attend my annual check ups so that if there was any changes it could be dealt with straight away. Now that my BG is going down my eyesight is improving,and hopefully its under control
     
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook