Retinopathy/maculopathy - help!

[gwai84]

Hi all,

Hoping for a bit of advice/reassurance. Feeling a bit overwhelmed and very very sad.

Bit of background - type 1 DM 22 years, other than mild background changes after 15 years no complications. HbA1c values a bit variable but not too bad - ranging from 7.5 - 8.5% last few years, difficult getting them lower without frequent hypos. Last 6 months got the Libre system and agreed to a pump, HbA1c now much better - last check 5.9%.

Unfortunately this improvement in control seems to have lit a fire under my retinopathy. I noticed that I had a couple of very small blind spots in one eye (not black, just gray/blurry) quite near my central vision in April. Optician suspected early maculopathy, went to eye A&E and they agreed - referred me urgently to eye clinic.

Saw them a couple of weeks later, and had progressed further - now early maculopathy in both eyes and early proliferative changes in the initial eye. Luckily I didn't have any macular oedema, but still pretty devastated. They arranged an angiogram and said they'd be back in touch with plans for laser treatment. Had the angio over a month ago, and heard nothing more until last week when I got a letter with an appointment for 3 months' time - a bit strange, I thought, but perhaps a good sign that nothing needed doing urgently?

That said the last few weeks I've noticed more and more blind spots. The original ones are still there, but I now have five in the first eye and one in the other eye. They're all quite small, and my vision is still 20/20, but I'm absolutely terrified and completely bewildered by what's going on. Wondering if they're cotton wool spots, but if so they seem to be appearing awfully fast. Has anybody else had this and did it get better?

I called the eye hospital and spoke to the consultant's secretary. She was very nice and passed on the new symptoms to the boss, who said that as long as my visual acuity isn't worse then I don't need to be seen sooner. No other explanation though. She suggested that I could see my optician and they'd contact the eye hospital if there were any urgent problems - got an appointment on Friday.

I've really been struggling with this. I'm a pretty anxious person and all I keep thinking about is the worst case scenarios. I haven't slept properly since April, I'm terrible company for my other half and family, and I feel really really down - and just when I thought I was feeling a little more myself I noticed the new spots and I'm back at square one.

Sorry for the length of the post. I think more than anything I just needed to unload! But if anyone else has had similar symptoms and can share their experiences I'd be really grateful.

Thanks everyone.

 

[catapillar]

Tagging @noblehead and @Dark Horse as they may have some experience / useful information for you.

 

[Dark Horse]

Did the ophthalmologist say that you definitely have proliferative retinopathy or that they suspected you might have it? Often an angiogram is used to differentiate between proliferative and pre-proliferative when they are not sure. Did your results letter after the angiogram state that you had proliferative diabetic retinopathy (PDR)? Did the appointment letter state that you would be having laser? Or was there a patient information leaflet about laser with it such as this:- https://www.uhb.nhs.uk/Downloads/pdf/PiPrepLaserTreatment.pdf If proliferative retinopathy had been confirmed you would expect details of treatment to be mentioned. Your GP should also have a results letter from ophthalmology and can talk through the results with you. I would make sure you get a copy of the results letter.

Although the 'blind' spots are worrying, take comfort from the fact that you had some when you were examined and even with that knowledge, the ophthalmologist made you a 3-month appointment. Some blind spots are not in the retina but are due to deposits in the vitreous jelly in front of the retina. Usually those spots will change position after the eye has been moved up and down rapidly while the head is held still.

Maculopathy does not always develop into macular oedema and can resolve on its own with continued good diabetic and blood pressure control. Monitoring frequently, e.g. every 3 months, means that if clinically significant macular oedema does develop it can be treated promptly. Meanwhile, you can get a rough check of your central vision by doing an on-line visual acuity test for each eye separately https://www.zeiss.co.uk/vision-care...ss/zeiss-online-vision-screening-check.html#1 and also checking with an Amsler grid for distortion http://www.allaboutvision.com/conditions/amsler-grid.htm If you get a drop in visual acuity or start experiencing visual distortion then you can ask to be seen sooner, as suggested by the consultant's secretary.

You can discuss this all with your optician at your appointment on Friday.

Thanks to @catapillar for the tag

 

[gwai84]

Thanks both for the quick replies!

The consultant said I had neovascularisation at the optic nerve head, which to my mind means proliferative disease. However I haven't had a results letter, and the appointment letter for 3 months has just an appointment time and nothing else - not particularly helpful!

Already been checking Amsler grids which is how I picked up the new blind spots. No change with manoeuvres which makes me think they're retinal, not the vitreous.

Optician fitted me in today (last minute cancellation). I have multiple new cotton wool spots (since 2 months ago) in both eyes and a tiny macular haemorrhage. They also agree that new vessels are forming at the optic nerve head on one side.

They've suggested I see someone privately, rather than wait 3 months - which I'm tempted to do purely to get answers to my questions! Not sure though.

Also wondering if I should relax my control a little, but I suspect that it'll just accelerate again when I tighten it in the future - I might be best just leaving it be.

Any thoughts gratefully appreciated!!

Thanks again.

 

[Dark Horse]

Thanks both for the quick replies!

The consultant said I had neovascularisation at the optic nerve head, which to my mind means proliferative disease. However I haven't had a results letter, and the appointment letter for 3 months has just an appointment time and nothing else - not particularly helpful!

Already been checking Amsler grids which is how I picked up the new blind spots. No change with manoeuvres which makes me think they're retinal, not the vitreous.

Optician fitted me in today (last minute cancellation). I have multiple new cotton wool spots (since 2 months ago) and a single tiny macular haemorrhage. They also agree that new vessels are forming at the optic nerve head on one side.

They've suggested I see someone privately, rather than wait 3 months - which I'm tempted to do purely to get answers to my questions! Not sure though.

Also wondering if I should relax my control a little, but I suspect the same thing will happen again when I tighten things in the future.

Yes, neovascularisation = proliferative disease.

Before rushing down the private route, I would contact your GP. They should have received a full hospital feedback letter detailing what was found and what is planned at your next appointment. It might be best to phone to check the letter has been received and then go in to discuss it. If the letter clearly states that you have PDR and explains the rationale for the 3-month appointment then you can be reassured that the appointment date is based on considered clinical judgement.

Alternatively, phone the ophthalmology department, explain that you haven't received a results letter and you are concerned that laser was discussed at your last appointment but there is no mention of it in your pending appointment. Although it is uncommon, it is possible for things to be recorded wrongly on patients' records. For example 'bring in for laser then do 3 month follow-up' could be confused with 'this patient has just had laser so do 3-month follow-up', especially now so many records involve drop-downs on the computer. Tell the ophthalmology department that you thought laser for PDR was urgent and ask them to explain the rationale for waiting 3 months, based on your notes.

There is some discussion about the effect of tightening up diabetic control on retinopathyhere:- http://www.diabeticretinopathy.org.uk/retinopathyprogression.htm

Let us know how you get on.

 

[noblehead]

Optician fitted me in today (last minute cancellation). I have multiple new cotton wool spots (since 2 months ago) in both eyes and a tiny macular haemorrhage. They also agree that new vessels are forming at the optic nerve head on one side.

Mention all this to your Dr tomorrow, they can fast-track you over to the Ophthalmology Dept should they feel there's a need.

When my own retinopathy was active I was told to contact the Ophthalmology Clinic if new symptoms appeared or my site got worse, they also said if the changes happened out of hours then I'd to go to the A&E Dept where the on-call Ophthalmologist would be bleeped.

Also wondering if I should relax my control a little, but I suspect that it'll just accelerate again when I tighten it in the future - I might be best just leaving it be.

I would run this by your Ophthalmologist first, although sudden tightening of bg control can make diabetic retinopathy worse (when the person previously had poor control) the overall benefits are huge, plus it's the swings from high-to-low that do the most damage so do check the SD (standard deviation) feature on your bg meter to see if your experiencing wide fluctuations in your bg levels.

Just one more thing, as well as controlling bg levels it's important to keep your bp and cholesterol levels in check, I was advised to keep my bp below 130/70 when my retinopathy progressed and was also prescribed a Ace-Inhibitor to assist. keep us informed on your progress @gwai84

 

[coleydug]

I had the 4th stage of retinopathy with proliterive macular odemea got max laser treatment to both eyes then last year needed viterectomy on left eye then

 

[johnpol]

I have had background Retinopathy for a few years, then in May this year I had my eye screening done at my annual review, two weeks later gets a phone call informing me that I need emergency appointment. When I attended they performed laser treatment to my right eye as it had progressed to Proliferative retinopathy and needed treatment immediately. it all came as a shock to say the least. I was told that the tighter I have been getting my BG readings it does accelerate the disease, in your case I would go back to your doctor to see if they can speed up your appointments.
Hope you get sorted soon

 

[gwai84]

Thanks for all the replies. Still got the blind spots (and maybe 1 or 2 new ones), but visual acuity still 6/5 in both eyes, which is reassuring.

Called my ophthalmologist's secretary to let them know the optician's findings. They were very nice, and passed on to the consultant that things had gotten worse. The reply however was that unless my visual acuity had changed, I didn't need seeing any sooner. No explanation offered for my worsening symptoms, no results letter, nothing.

I spoke to my GP; the last letter they have is the one from my very first appointment saying that there was neovascularisation, describing a plan for an angiogram and then probably laser.

I'm just really confused by it all and I don't think I can wait 2 months to see someone. I've tried but I'm getting no more information out of the ophthalmology team. I've decided to see someone privately, if for no other reason than I get forty minutes to ask all my questions without interruptions - I can ask about what they recommend for blood sugar control and whether an ACE inhibitor might be a good idea.

It might be a bit over the top, but I'm not sleeping and I'm spending every day constantly worrying, checking and re-checking my vision. I feel like I can't enjoy anything with this hanging over my head. I'm feeling pretty desperate - it's been going on for two months now and I'm exhausted, so I think it'd be worth the money even if it just gives me a bit of relief.

Sorry for unloading again and thanks for your posts. If anyone has any more advice or experiences to share I'd be very grateful! Otherwise the private appointment is in a couple of weeks so will keep you updated.

 

[Dark Horse]

Thanks for all the replies. Still got the blind spots (and maybe 1 or 2 new ones), but visual acuity still 6/5 in both eyes, which is reassuring.

Called my ophthalmologist's secretary to let them know the optician's findings. They were very nice, and passed on to the consultant that things had gotten worse. The reply however was that unless my visual acuity had changed, I didn't need seeing any sooner. No explanation offered for my worsening symptoms, no results letter, nothing.

I spoke to my GP; the last letter they have is the one from my very first appointment saying that there was neovascularisation, describing a plan for an angiogram and then probably laser.

I'm just really confused by it all and I don't think I can wait 2 months to see someone. I've tried but I'm getting no more information out of the ophthalmology team. I've decided to see someone privately, if for no other reason than I get forty minutes to ask all my questions without interruptions - I can ask about what they recommend for blood sugar control and whether an ACE inhibitor might be a good idea.

It might be a bit over the top, but I'm not sleeping and I'm spending every day constantly worrying, checking and re-checking my vision. I feel like I can't enjoy anything with this hanging over my head. I'm feeling pretty desperate - it's been going on for two months now and I'm exhausted, so I think it'd be worth the money even if it just gives me a bit of relief.

Sorry for unloading again and thanks for your posts. If anyone has any more advice or experiences to share I'd be very grateful! Otherwise the private appointment is in a couple of weeks so will keep you updated.

I would phone the secretary again and explain that your GP hasn't had a results letter from the angiogram and ask for the letter to be re-sent as it has clearly gone astray. You can ask for a copy to be sent to you too. It may put your mind at rest and anyway it would be useful to take to any private appointment you have. Let us know how you get on.

 

[noblehead]

I'm just really confused by it all and I don't think I can wait 2 months to see someone. I've tried but I'm getting no more information out of the ophthalmology team. I've decided to see someone privately, if for no other reason than I get forty minutes to ask all my questions without interruptions - I can ask about what they recommend for blood sugar control and whether an ACE inhibitor might be a good idea.

I can fully understand your reasons for wanting to go private, there was a lady on the forum a few years back who did just this and had the opportunity to ask as many questions as she liked about her condition and treatment plan, she eventually was treated privately (it was for a Vitrectomy Operation) and said the care and treatment was second-to-none.

It might be a bit over the top, but I'm not sleeping and I'm spending every day constantly worrying, checking and re-checking my vision. I feel like I can't enjoy anything with this hanging over my head. I'm feeling pretty desperate - it's been going on for two months now and I'm exhausted, so I think it'd be worth the money even if it just gives me a bit of relief.

Given what the Optician said about the new cotton wool spots and the tiny macular haemorrhage did the gp not offer to speak with the Ophthalmology Clinic and see if you can be seen asap, they can do this if they believe a condition has deteriorated and needs urgent attention, I'd ring them back and ask if they can speak with Ophthalmology and tell your Dr about your exhaustion and anxiety issues. Hopefully if they do see you sooner you can then cancel the private appointment. Good luck.

 

[gwai84]

Update - saw a different consultant privately on Tuesday. He was wonderful and explained the angiogram result in detail, so now I understand what's going on.

The angiogram showed that I had severe pre-proliferative disease, not proliferative - hence the 3 month call back I guess. It also showed that I have areas of macular ischaemia, which is what's causing the blind spots. Unfortunately there isn't much to be done about that other than tight sugar and blood pressure control, but given that my visual acuity is still 6/5 it's mild and may improve with time.

Unforutnately though when he looked at my eyes I have definite neovascularisation in the left eye which has progressed in the 6 weeks since the angiogram. So he brought me in yesterday (on the NHS) and did pan-retinal laser - seriously unpleasant, but I gritted my teeth and got through it!

He recommended sticking to tight control as in the long term it will be much better for me, and tightening again in the future will accelerate the disease again. Starting on an ACE inhibitor this week too.

His summary of the situation was that whilst my disease is aggressive, this is common with tightened control. It's sight threatening but very treatable - it's likely to be a stormy couple of years, and my vision may get worse before it improves, but he'd be surprised if I didn't keep normal visual function in the long-term.

Obviously this doesn't exactly qualify as "good" news and it's been a crazy few days, but I feel so much better now for knowing what's happening, and whilst there are no guarantees my prognosis isn't too bad.

Also glad I went privately - the laser treatment would have been delayed by two months...

I'm having a repeat angiogram in 2 weeks to assess the other eye in more detail before they decide whether that one needs lasering, with follow up in 6 weeks.

Thanks for all your messages and hopefully things will go a little more smoothly from here!

 

[Dark Horse]

Update - saw a different consultant privately on Tuesday. He was wonderful and explained the angiogram result in detail, so now I understand what's going on.

The angiogram showed that I had severe pre-proliferative disease, not proliferative - hence the 3 month call back I guess. It also showed that I have areas of macular ischaemia, which is what's causing the blind spots. Unfortunately there isn't much to be done about that other than tight sugar and blood pressure control, but given that my visual acuity is still 6/5 it's mild and may improve with time.

Unforutnately though when he looked at my eyes I have definite neovascularisation in the left eye which has progressed in the 6 weeks since the angiogram. So he brought me in yesterday (on the NHS) and did pan-retinal laser - seriously unpleasant, but I gritted my teeth and got through it!

He recommended sticking to tight control as in the long term it will be much better for me, and tightening again in the future will accelerate the disease again. Starting on an ACE inhibitor this week too.

His summary of the situation was that whilst my disease is aggressive, this is common with tightened control. It's sight threatening but very treatable - it's likely to be a stormy couple of years, and my vision may get worse before it improves, but he'd be surprised if I didn't keep normal visual function in the long-term.

Obviously this doesn't exactly qualify as "good" news and it's been a crazy few days, but I feel so much better now for knowing what's happening, and whilst there are no guarantees my prognosis isn't too bad.

Also glad I went privately - the laser treatment would have been delayed by two months...

I'm having a repeat angiogram in 2 weeks to assess the other eye in more detail before they decide whether that one needs lasering, with follow up in 6 weeks.

Thanks for all your messages and hopefully things will go a little more smoothly from here!

Thanks for letting us know the details of how you got on. Sorry to hear you had to have PRP and found it so unpleasant. It sounds like you're on the right tracks now andI hope all goes well with the other eye.

 

[col101]

I'm glad you've finally got an explanation of what's happening. I have blind spots and find it scary. I figure at least if we know what's goings on we're in a position to do what we can, so in my case it's strict BG and BP control. Good luck with it.

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