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Maculophathy

Discussion in 'Diabetic Retinopathy' started by COS1916, Aug 1, 2019.

  1. COS1916

    COS1916 · Member

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    Hi All

    Just joined today. Mainly out of complete fear !!

    Been a T2 for nearly 5 years now (now 50 years old) - was diagnosed in 2014 and immediately started running and low carbing.

    The first a1c came back as 39 which I assume was in the non diabetic range - I had the same results
    For the next couple of years until last year it was 44

    Long story short I have always had the background retinopathy letter after my eye screenings but today received a letter stating your result shows signs of diabetic maculopathy.

    needless to say I’m freaking out - I did ask to see the last fundus image (July 2019) and it showed a very small amount of small white grey dots - plus I have had a blinking spot (like a camera after image) which corresponds with where the dots are - the blinking spot started May 2018 but the screening letter came back stating background retinopathy (in July 2018).

    Any thoughts or advice - I’m in a complete anxiety state over this !
     
    • Hug Hug x 2
  2. Dark Horse

    Dark Horse · Well-Known Member

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    Sometimes maculopathy is mild and clears up on its own. If there is only a small amount of exudate and your visual acuity (ability to read the eye chart) is good, you may just be monitored in the surveillance arm of the screening service. If there is a larger amount of exudate and/or your visual acuity has dropped, you may be referred to the Hospital Eye Service for an OCT. This test will show whether or not any changes are significant and whether or not any treatment is advisable. If there are no significant changes, you would be referred back to screening. If changes are borderline, you may be monitored in hospital until the changes clear up or become significant. If the changes are significant, you may be offered treatment. Treatment is most successful when caught early, as in this case.

    At this stage, you just need to worry about continuing to keep good diabetic control and making sure you attend all your eye appointments.
     
    • Winner Winner x 1
    #2 Dark Horse, Aug 2, 2019 at 11:55 AM
    Last edited: Aug 2, 2019
  3. COS1916

    COS1916 · Member

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    Hi Dark Horse

    Many thanks for your input and advice - I really appreciate it.

    My eye sight still remains pretty good despite the issue being relatively close to my central vision.

    I must say I was surprised when I got the letter as I have always maintained a relatively strict low carb diet and exercise regime !

    My last few a1c’s were 39,39,39 and last year 44.

    If anyone else has experience of this problem I would appreciate your input.

    Thanks again
     
    • Like Like x 1
  4. mr_cat

    mr_cat · Well-Known Member

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    Hopefully it will clear up on its own if not there are effective treatments. anti Vegf injections being the most effective on average.
    My own issue is Macular Odema a step on from yours which is treated by the above anti vegf injections.
    I get the flashing or flickering thing too all be it intermittently and visual distortion such a straight lines looking wavy in places.
    One other test i do is look at a tv with no input just the fuzzy white noise with each eye, areas of damage show up as blurred spots.
    You can check further with a grid of lines too [https://www.allaboutvision.com/conditions/amsler-grid.htm] look carefully at the grid with each eye looking for wavy or missing bits of lines don't move your eyes focus on a dot in the centre of the grid.
    The reason I mention this is because it is an easy quick and dirty way of monitoring things.
    Above all don't panic nothing will go down hill super fast with this. [i have had this for 3 years+]
    Obviously there is plenty of info on the web too. [as well as other members of this great forum]

    I hope the above is of some help.

    All the best

    M
     
  5. COS1916

    COS1916 · Member

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    Many thanks for your help Mr Cat - I appreciate it

    Going strict low carb and running lots more now to try and halt and reverse it !

    Scary times
     
  6. COS1916

    COS1916 · Member

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    Well I just had a private consultant look at my eyes (dilated) and an Oct scan which revealed a small amount of exudates - the Oct scan also revealed that my right Macular was raised (indicating fluid ?) !

    Left eye is ok

    The consultant advised that it would probably require treatment with an injection of anti-vegf ?

    Do you think I need a second opinion or is this standard advice

    What are the eye injections like ?

    My NHS follow up appointment is due 1st October

    Stressed is not the word
     
  7. novorapidboi26

    novorapidboi26 Type 1 · Well-Known Member

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    I echo what @Dark Horse is saying....

    its really nothing to overly worry about at this stage...

    the beauty of regular check ups and good technology is that we can stay up to date with every tiny little change that takes place.....even though in this case, there is a good chance you wont need or may never need treatment for it......

    I too have observable maculopathy in one eye....it freaked me out too despite having no effect to my vision....

    stable control will help it ....
     
  8. COS1916

    COS1916 · Member

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    Many thanks Novorapidboi - I really appreciate you replying

    The consultant I saw today (and who recommended I see a retinal specialist) just called after my previous message and told me that he has spoken to the retinal specialist who advised treatment would only be required if I saw a decrease in my vision

    Did you have a raised macular on the OCT scan ?

    Once again many thanks
     
  9. carty

    carty Type 2 · Well-Known Member

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    I just had a letter after my retinal screening saying that I need to go for an O CT scan please can someone let me know what this entails
    Carol
     
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  10. COS1916

    COS1916 · Member

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    Hi Carty

    An OCT scan involves a machine where your eyes are photographed (like the ones used in the Diabetic screening)

    The images show the thickness of the retina / an image of the retina (like the images from the retinal screening programme) and various other parameters

    It will probably only take a few minutes - the consultant will then go over the results

    Good luck
     
  11. mr_cat

    mr_cat · Well-Known Member

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    I have oedema beside the fovea in both eyes and have received those injections several times for each.
    Its generally a course of 3 injections around a month apart.
    Here is my description of the procedure i gave from another thread on this:

    Make sure you insist they wash out all the iodine after the procedure.
    I am very sensitive to iodine , the first time i had the procedure once the anaesthetic wore of it was as my eyes were filled with broken glass for hours, not nice.
    The procedure itself is not painful , but it is not exactly relaxing!
    The process is lots of drops of anaesthetic and antibiotics [the a for mentioned iodine] into the eye , when numbed the eyelids are help open with a clip you are then asked to look sideways or up at a target [the doctor will keep you informed what is going on all the time so no surprises] the injection itself feels like a pressure and brief ache , you will even see the liquid go in.
    After the injections you may see black dots which are bubbles these go in a few hours.
    Your vision may blur completely after 10-15 mins ,it varies with me longest i had was first time near 2 days last one it never got fully blurred.
    Do ensure you have transport available to get you home after the procedure as driving is a no no.
    Obviously the above is only my own personal experience .

    I hope the above info helps. please try not to stress to much the treatment does help.
     
  12. COS1916

    COS1916 · Member

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    Thanks again Mr Cat - I appreciate your reply
     
  13. mr_cat

    mr_cat · Well-Known Member

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    You are welcome:)
     
  14. carty

    carty Type 2 · Well-Known Member

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    Thanks I have had dodgy eyes since I was 18 months old ,now 70 + so had lots of tests etc I just didn't know what O T C meant
    Carol
     
  15. COS1916

    COS1916 · Member

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    I have been reading some comments on this forum regarding the sudden lowering of high blood glucose which results in a worsening of any retinopathy present

    Does anyone know why this happens ? And once you have stable control then does the retinopathy stabilise and eventually resolve ?

    Many thanks
     
  16. mr_cat

    mr_cat · Well-Known Member

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    That was my experience all my symptoms got worse when bloods got back to normality , there was a paper cited somewhere of the forum describing the mechanisms of action for this .
    long and short of it is that things can continue to worsen for 3-4 years after normalisation[will try to search for the paper if i get time]
    Joy eh!:mad:
     
  17. COS1916

    COS1916 · Member

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    Thanks Mr Cat

    Sure sounds odd that things would worsen once control is established

    Does the retinopathy stabilise eventually - or even resolve

    Would be good to see that paper you mention

    Once again thanks for all your input
     
  18. mr_cat

    mr_cat · Well-Known Member

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    had a quick dig about nothing turned up but it is out there somewhere.
    The impression i have is that the growth of weak blood vessels once initiated need constant monitoring.
    I initially thought that a course of injections was all that was needed but regular update or treatments might actually be the case.
    Oh the joy!:arghh:
    Each of use is different though so your millage may vary, fingers crossed for you:)
     
  19. COS1916

    COS1916 · Member

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    Thanks Mr Cat - I appreciate your help

    Fingers crossed it will remain stable or resolve over time

    I’m due to see the NHS on 1st October to see if I need treatment etc

    I’m running a lot and low carbing to keep bg stable

    This disease sure does throw up some surprises especially when your A1C is good !
     
  20. mr_cat

    mr_cat · Well-Known Member

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    joyous ain't it.
    fingers crossed.
     
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