Any advice appreciated. Two weeks ago after my Rheumatologist upped my Hydroxychloroquine to 600 mg daily I had my Optician appointment and was told I had macular odema and little peripheral vision in my lower left quadrant. I was referred urgently to the macular clinic four days later. On advice from my GP and chemist I reduced my dose of Hydroxychloroquine back to 400 mg.At the clinic I was to,d that there was no macular odema even though I saw the scans of it four days before. I still have wavy lines on the Amsler Grid and a nasty band type headache across my forehead. The Rheumatology helpline nurse advised to stop the Hydroxychloroquine completely after ten years, get blood tests and get my BP taken. My bloods were excellent with the lowest CRP levels I have ever had, my BP is higher than normal but not alarmingly so. Today I received quite a snotty letter from Opthamology thanking me for referring myself?? and stating that my eyes are normal. I feel that I am being fobbed off again. I did not refer myself the Optician told me my eye could rupture and said the headaches were consistent with the pressure behind my eyes. Sorry this is a long post but I feel dreadful and so disheartened. The very worst part of being chronically sick is the battle with professionals.
Opthamology fob off: Any advice appreciated. Two... - LUPUS UK
Opthamology fob off
Would highly recommend you go back to your gp and request a 2nd opinion referral! Take the opticians report with you again.
I understand how frustrating this is and the worry this is causing you.
Don’t take no for an answer. X
Thank you I have a GP appointment on Monday but could not see my usual GP for four weeks so my ten minutes will be spent explaining. The Optician did not give me a report but stressed thank goodness in the presence of my carer that I had macular oedema and even showed me the image on screen. It looked like a snake that had just had a meal, thin on both ends with a big bump in the middle. The letter I received today says that I reported distorted vision when I certainly did not the Optician referred me because of the pressure behind my eyes, the lack of peripheral vision and the potential of my eye to rupture. It frightened me. Then to be told four days later it had “ gone” and questioned was I sure it was there?? Why in God’s name would I make it up? And even if I had why would the referring Optician send an urgent referral. I feel so damned fed up.I am hoping fervently that this new GP will help but already I am resigned that they usually do not having been told GP’s don’t deal with eyes go to A&E, only to be told we only deal with emergencies go back to your GP.
If your vision has changed suddenly then I think it is an emergency? I wonder if the ophthalmologist has somehow confused your notes with another patient as it just doesn’t really make sense does it? Could you go back to the optician tomorrow perhaps and explain and ask them to communicate with the ophthalmologist and clear this confusion about imaging and diagnosis up perhaps?
I doubt it as the first Optician showed me images they had taken..they took two just to confirm, and actually explained what it was and the potential to rupture and if it happened to go straight to A&E. Four days later, the same scans, different branch of Specsavers who now are contracted out to be a triage for the NHS day it’s gone?? I was asking how? Why? Will it come back etc and was met with shrugging and that I would hear from the hospital. I will speak to the doctor on Monday and see if they have any reports as the first Optician said she would be notifying my GP and Rheumatologist. If I have that report I can ring and ask how can oedema just disappear and is there a potential for it to return if I re start the Hydroxychloroquine. Thank you for the advice, it has helped me focus. Sometimes you get lost in the frustration of it all
This is the problem with NHS commissioning of services from large franchises such as specsavers isn’t it? - so frustrating for you. I had something slightly similar happen with a flame haemorrhage near my optic nerve. Luckily it was an independent optometrist who identified it and forwarded my new GP the image by email copying me in. So I had the image. When I was checked by a new optometrist a few months later it had gone. But this was a different thing to yours of course - probably signalling trauma to the eyes and high BP in my case
In your case though the symptoms have carried on so this is why I would be very firm about wanting answers when you see the GP. Best of luck.
Thank you I will try my damndest. I do hope your eyes are ok now?
Yes thanks my eyes are fine apart from always being severely dry from Sjögren’s.
Can you get images and text report from SpecSavers? Make and keep copies, Then take to dr. ?
I have requested them and now waiting for a response
Well done!
Hoping it’s resolved for you but I think it’s right to double check! Praying that you have energy to follow through all the steps. That can be part of the challenge! 🙏🏽
Blessings.
Yes indeed it can. I am now in agony as my Hydroxychloroquine has worn off. I haven’t had pain this bad for a very long time. I really hope that there can be a compromise. Thank you for your kindness x
Sound advise from Lisalou x
Oh no this is dire for you? Who to trust about your eyesight if not an ophthalmologist? 600 seems very high a dose to move up to if you’ve been taking it for 10 years already but presumably your rheumy knows best.
You should be able to self refer to the eye clinic if you’re on Hydroxy or have any sudden vision changes - especially if an optician has advised it. I don’t see why the ophthalmologist should feel the need to refer to this at all.
Perhaps you should contact the eye clinic again by phone and explain your situation re wavy amsler and request they clarify what is causing your vision problem if not macular oedema? Did they not tell you what was causing the change in vision which has coincided with the rise in Hydroxy dose? There must be some reason - if migraine your GP might be able to confirm. It’s not acceptable for the ophthalmologist to send you away without an explanation if your vision has changed - even if this has nothing to do with Hydroxy. I hope you can get this resolved and your eyesight resumes normality. Hydroxy made my ESR and CRP drop right down to near normal but unfortunately I had an allergic reaction to it.
I really do not think it’s a migraine. It started four weeks into the increased Hydroxychloroquine dose along with the grey patches and wavy lines on the Amsler Grid. It also does not feel like a BP headache. It just feels as if I have a restrictive band around my forehead. The system here is that an Optician refers you to Specsavers who have hospital grade OCT scans which send straight to the hospital Ophthalmology Unit so I have not been seen by the Ophthalmologist. I feel angry that the letter I have says that I demanded a referral because I reported distorted vision when in fact all I told the Optician was that I had a headache and my Amsler Grid was wavy.The letter makes me sound hysterical whereas I have been worried because of what they told me. You get so sick of having to justify yourself . Thank you for the advice.
So no one has double checked your actual eyes - just the imaging? I’m still a bit confused about who wrote the letter if no one other than an optician has seen and examined you? Sorry if I’m being obtuse.
Where I live in Scotland either the optician or GP can refer a person to ophthalmology and there is a walk in facility in the hospital eye clinic.
I’ve waited for up to 3 hours twice there now so it’s always very busy but the checks have always been sight tests, looking into my eyes with magnifier, testing for how dry my eyes are using anaesthetic and yellow dye. I’ve never actually had CT/ MRI or other imaging done in the hospital but I’ve had them done in various optician’s - all seem to have state of the art equipment these days. Is there an emergency eye clinic nearby where you can drop by tomorrow and ask for a second opinion perhaps?
Sorry it is probably me nkt explaining properly. I had started the headaches and looked at the Grid then made an appointment with Specsavers. After an hour and a quarter the Optician told me I had no left quadrant peripheral vision and macular oedema consistent with the increase in Hydroxychloroquine. She then referred me to the macular clinic which is in another Specsavers branch thirty mikes away. They completed all the same tests four days later and said my eyes were ok but that they had sent them to an Opthamologist. Today I got a letter from the hospital Opthamologist stating that I had demanded to be seen because of distorted vision but that there was nothing wrong with my eyes and they did nkt want to see me. I hope that’s clearer. The brain fog is dreadful with me lol
I’m sorry you’ve had this experience. My ophthalmologist was overruled by his consultant. His junior thought I had macular oedema and a visual field defect, on the next appointment I was see by the consultant who said there was nothing wrong. Certainly if you are still having problems on the amsler grid you need seeing again and soon. At the end of the day everyone one is different as is the quality of the dr you see. Persevere and don’t give up. You can go to pals who mediate for patients in hospitals and address any issues. Good luck xx
Thank you so much
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