Urgent Referral To Ophthalmologist, Help!

BibaBee

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583
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My husband was diagnosed with T2 just over four weeks ago. It was very sudden and traumatic, including a 4 night stay in hospital. Once his BG stabilised, he was discharged and all was well. He was prescribed Metformin and insulin and over the next week or so, his levels dropped into the 5-8 range. We were warned about bluriness, but his vision became really, really poor. He had also had ongoing visual disturbance for over a year, but did not seek medical help or an eye test due to extreme health anxiety.

He felt like something wasn't right with his vision. We have just got back from a diabetes eye check (we decided to do this ourselves, rather than wait, on our DN's advice.). Notes from optician are that there are extensive changes, vitreous haemorrhages and exudates. He also failed the Amsler test. I know that none of this is good news and he is beside himself at the moment. Please can anyone share any glimmers of hope?
 

sally and james

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Hi @BibaBee Five years ago, my husband was diagnosed T2, with all sorts of eye problems, exudates and so on. He went straight on to a low carb diet (which did lead to a period of poor vision and no driving for a few weeks, while his body adjusted), but gradually things improved. He drives, gets a new licence every three years, almost all signs of diabetes have gone, apart from marks from four year old laser treatment and healing continues. The change, according to the opthalmologist is "amazing".

Never underestimate the body's ability to heal itself, given a chance. Stop consuming sugar (in all its forms), accept the treatments that are necessary at this stage (laser, injections or whatever is recommended) and then allow healing to take its course. Sally
 

BibaBee

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583
Type of diabetes
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Hi @BibaBee Five years ago, my husband was diagnosed T2, with all sorts of eye problems, exudates and so on. He went straight on to a low carb diet (which did lead to a period of poor vision and no driving for a few weeks, while his body adjusted), but gradually things improved. He drives, gets a new licence every three years, almost all signs of diabetes have gone, apart from marks from four year old laser treatment and healing continues. The change, according to the opthalmologist is "amazing".

Never underestimate the body's ability to heal itself, given a chance. Stop consuming sugar (in all its forms), accept the treatments that are necessary at this stage (laser, injections or whatever is recommended) and then allow healing to take its course. Sally

Thanks Sally. He is so scared right now, as he is unable to do anything. He's a creative person and cannot work. It's heartbreaking. He is convinced it is the end of his career and his life.
 

Dark Horse

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Sorry to hear about problems found by the optician. The good thing is that the problem has now been identified and that there are tried and tested treatments for diabetic retinopathy. It's really important that your husband attends all the eye appointments offered to him at the hospital despite any feelings of anxiety he may have.
 

BibaBee

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583
Type of diabetes
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Tablets (oral)
Sorry to hear about problems found by the optician. The good thing is that the problem has now been identified and that there are tried and tested treatments for diabetic retinopathy. It's really important that your husband attends all the eye appointments offered to him at the hospital despite any feelings of anxiety he may have.
Thanks Dark Horse. I can barely see through all the tears right now. He is so worried that his vision is going to stay the way it is.
Be careful with rigourous diet changes when on insulin please.
Thank you. We are reducing insulin with a view to him coming off it, now he is off the steroids (to treat Bel's Palsy). We are being careful, just moderate low carb for the moment.
 
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Grant_Vicat

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I do not have diabetes
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Thanks Dark Horse. I can barely see through all the tears right now. He is so worried that his vision is going to stay the way it is.

Thank you. We are reducing insulin with a view to him coming off it, now he is off the steroids (to treat Bel's Palsy). We are being careful, just moderate low carb for the moment.
@BibaBee Just to let you know that I had several laser treatments in both eyes between 1979 and 1983, when treatment was somewhat primitive. Have good but scarred vision, especially against bright backgrounds, and have been driving without a break (!) since 1988. I wish you both the very best of luck.
 

BibaBee

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Does anyone know how long we're likely to wait for an 'urgent' referral? Or is that like asking how long is a piece of string?
 

Fruitella

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304
Type of diabetes
Type 2
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Insulin
Does anyone know how long we're likely to wait for an 'urgent' referral? Or is that like asking how long is a piece of string?
This will vary but I was once packed off for a speedy apppontment by the optician. The hosp people were much more laid back and said it wasn't as urgent as suggested so try and stay calm. Over the years I have had a few treatments and it has all been a positive experience so far apart from this week's apppontment being cancelled twice.
 
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BibaBee

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This will vary but I was once packed off for a speedy apppontment by the optician. The hosp people were much more laid back and said it wasn't as urgent as suggested so try and stay calm. Over the years I have had a few treatments and it has all been a positive experience so far apart from this week's apppontment being cancelled twice.
Thanks Fruitella. Unfortunately, the optician couldn't make a direct deferral, because they were out of our local area. We decided to visit an optician who was recommended where my parents live, but they live in a different nhs area. He wrote a note for our GP instead, so we will have to wait to be referred by them.
 

Fruitella

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Messages
304
Type of diabetes
Type 2
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Insulin
Thanks Fruitella. Unfortunately, the optician couldn't make a direct deferral, because they were out of our local area. We decided to visit an optician who was recommended where my parents live, but they live in a different nhs area. He wrote a note for our GP instead, so we will have to wait to be referred by them.
Maybe visit a local optician when you are back home for another appointment. Good luck.
 

BibaBee

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Maybe visit a local optician when you are back home for another appointment. Good luck.
He's traumatised by today to be honest, so I will just see what the GP says. We're due to speak with them tomorrow.
 

Dark Horse

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Does anyone know how long we're likely to wait for an 'urgent' referral? Or is that like asking how long is a piece of string?
The first appointment in the hospital for a 'normal' urgent referral for diabetic retinopathy should be within 6 weeks of the eye test. Although this may seem like a long time when you're anxious, the vitreous haemorrhages may need to settle before treatment is given. In the meantime, avoid strenuous exercise, anything which increases blood pressure (such as heavy lifting) and sleep propped up with extra pillows so the haemorrhages can settle towards the bottom of the eye.
https://patient.info/health/visual-problems/vitreous-haemorrhage
 
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BibaBee

Well-Known Member
Messages
583
Type of diabetes
Family member
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Tablets (oral)
The first appointment in the hospital for a 'normal' urgent referral for diabetic retinopathy should be within 6 weeks of the eye test. Although this may seem like a long time when you're anxious, the vitreous haemorrhages may need to settle before treatment is given. In the meantime, avoid strenuous exercise, anything which increases blood pressure (such as heavy lifting) and sleep propped up with extra pillows so the haemorrhages can settle towards the bottom of the eye.
https://patient.info/health/visual-problems/vitreous-haemorrhage

Thank you so much. I feel a little calmer today. As luck would have it, I have just ordered my husband a wedge pillow for in bed (he has reflux). He found it more comfortable sleeping propped up in hospital. With a couple of pillows, he is nicely propped up now.

I feel a bit more reassured about the haemorrhages, still really worried about the extent of Macular Edema.
 

BibaBee

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We are seeing an Ophthalmologist on Friday at Manchester Eye Hospital. We've decided to go privately initially to speed up the process. Please send positives vibes our way. He is absolutely terrified.
 

sally and james

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We are seeing an Ophthalmologist on Friday at Manchester Eye Hospital. We've decided to go privately initially to speed up the process. Please send positives vibes our way. He is absolutely terrified.
There's nothing to be frightened of, even less to be terrified of. The big advantage of going privately, apart from a prompt appointment, is that you actually see the consultant, not a junior. They have time, lots of it, to reassure you and explain things and treat you as an individual, rather than someone for whom boxes have to be ticked and you won't be passed from pillar to post, sitting in corridors waiting for eye drops to take effect before the next person calls you into yet another room. At least this has been our experience. Rather than being a terrible experience, I suspect you will come out much calmer than you went in and properly informed. this is the start of things looking up.
From the way you write, @BibaBee , I suspect you will go into the consultation with your husband. A private consultant is unlikely to mind. I would strongly recommend this. Take a note book, write down what's said. Take a list of questions, so you don't forget anything. Show that you are a strong team, working together.
Wishing you all the best,
Sally
 

BibaBee

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583
Type of diabetes
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There's nothing to be frightened of, even less to be terrified of. The big advantage of going privately, apart from a prompt appointment, is that you actually see the consultant, not a junior. They have time, lots of it, to reassure you and explain things and treat you as an individual, rather than someone for whom boxes have to be ticked and you won't be passed from pillar to post, sitting in corridors waiting for eye drops to take effect before the next person calls you into yet another room. At least this has been our experience. Rather than being a terrible experience, I suspect you will come out much calmer than you went in and properly informed. this is the start of things looking up.
From the way you write, @BibaBee , I suspect you will go into the consultation with your husband. A private consultant is unlikely to mind. I would strongly recommend this. Take a note book, write down what's said. Take a list of questions, so you don't forget anything. Show that you are a strong team, working together.
Wishing you all the best,
Sally
Thanks Sally. I really hope you are right. Keep everything crossed for us. x
 
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BibaBee

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@sally and james You were right. The consultant was lovely and really reassured us. As I suspected, he has Macular Edema in both eyes, thankfully worst in his weaker eye. He will need injections in both eyes, laser in his weaker eye. Although, there are no guarantees, he thinks there is a good chance he will see an improvement. We're starting the treatment privately initially, then moving on to NHS.

Thank you so much to everyone for your support. We have a long road ahead, but I feel like we cleared the first hurdle.