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Retinopathy

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Flutterby

Flutterby

Well-Known Member
Relationship to Diabetes
Type 1
I thought I'd update you all on my weird and wonderful life! Some of you know what a difficult 6-8 months it has been with my dad being ill (he's now doing ok, he's still got the catheter but is happy to stay that way if the medics will let him) on top of that there have been family fallouts close to home so that has been very upsetting, especially as Paul and I have just celebrated our 25th Wedding Anniversary and had to do it amidst all this tension.

My last HbA1c was 64 (8 in old money) and my cholesterol was 5.1 I wasn't very happy with the HbA1c although nobody else seemed too bothered. Anyway cutting a long story short I have been as careful as possible despite all the stress and my recent results are HbA1c 58 (7.5) and cholesterol 4.6 which I am delighted with.

The fly in the ointment is that my routine screening has come back saying I have retinopathy in both eyes and am being referred to Opthalmology. I had maculopathy a few years back which had to be lasered and I would have preferred for that to be my one and only experience. I now have to wait for an appointment.

Despite my results being better I don't feel my day to day life reflects that with lots of hypos and no real pattern to things so I went to see the DSN yesterday and she is going to help me sort it out. I am very thankful for that and she is going to sort me out with a cleverclogs meter eventually when we have the info we need to set it up. Another option might be for me to go on the new 24 hour insulin (can't remember the name) but she has to check with the consultant about that. I am logging off now as hubby wants the laptop but I thought you'd like to know the latest.x
 
I am guessing you are talking about Tresiba/degludec for the insulin. Hope you can get things sorted, it can be a niggle when you get good results but feel a bit flat about how they were achieved (cholesterol excellent though!).

I hope that the retinopathy thing is just a case of someone being a bit over cautious, and that no treatment is necessary 🙂
 
That's the one Northy, thanks. My head was spinning a bit yesterday. I am taking encouragement from your recent experience with the retinopathy - maybe the goal posts have been moved as to when they refer us on.

I have recently started using Linwood's milled flaxseed which is high in omega 3, I had read reviews from others saying it lowered their cholesterol so I thought I'd try it. A spoonful sprinkled on porridge in the morning seems to have worked!
 
Hi Flutterby sorry that you're having such a tough time but brilliant news about your HBA1C and cholesterol - you've worked so hard to get those results despite all of the problems so you should be very proud of yourself. I really hope that they don't have to do anything with regard to the retinopathy and that they decided that you just need monitoring. Big hugs {{{{{{Flutterby}}}}}}
 
I also really hope that the ophthalmology appointment will just be an extra for more thorough screening, so that you won't need any more treatment, but if you do need treatment sooner rather than later nearly always means better for eyesight. I was once referred to glaucoma screening after optician found slightly raised intra optical pressure (with air puff test), initially in community ophthamology clinic in a university department, then at hospital. Eventually, they admitted that the change in threshold was the reason for referral, and that my optic nerves look odd because of eye ball shapes due to very short sight, corrected by contact lenses.

I had another related experience, which I have described before - Dec 2012, routine retinal screening at annual review showed 1 tiny spot of retinopathy, then had a very tough year, which resulted in being homeless / sofa surfing for a few months, before and an after moving cities and transferring one job, giving up others. So, while I tried to keep good control, it wasn't the top priority at times. Once I found a GP, after getting a permanent home in Nov 2013, I was quickly referred to hospital diabetes clinic and retinopathy screening in Jan 2014. When the screener showed me completely clear images of my retinae, I burst into tears of relief - and she was so kind.

Good luck with your cholesterol, too 🙂
 
Hi flutterby happy to hear about HbA1C is down and cholesterol. I started today with fish oil capsules, though I was told to get some with omega 3 and 6 in them, not sure why.

So sorry about the retinopathy, I had terrible experience with it, so the sooner it is diagnosed and monitered/ treated the better. Good luck 😛
 
Thank you all for your replies.

Copepod I can imagine your delight to get an all clear result. I am not sure all medics realise how frightening it is for us but I'm glad you got a good one. I burst into tears when the DSN told me how well I was doing on Friday - just relief that I wasn't the failure I thought when I got the retinopathy result.

Tintin, I don't know much about Omega 6 but I hope it works for you. I can't take statins so I'm very happy with my new lowered result.

Thank you Amanda for your encouragement.
 
Thought you might like to hear an update - I'm not sure I mentioned that the letter bearing the results of my screening went astray so the result of "retinopathy in both eyes" was given to me by a lady when I rang up to say I'd heard nothing. A week or so ago I got a letter to go to opthalmology on 25th March at our local hospital. Thus far it all seemed as expected.

Yesterday another letter came saying I have Maculopathy and will be referred to a different hospital - getting there is awkward as there is no direct public transport, it would probably take me about 2 hours each way. The letter said to ring if you wanted to go to a different hospital so that's what I did.

I explained that I'd already got an appt locally and also was confused as after being told I had retinopathy it had now changed to Maculopathy! This person explained that as for going to a different hospital that was incorrect and down to their software not allowing them to change it!! She said I have maculopathy in my left eye and background retinopathy in my right.

I asked her to send me copies of the letter I should have received in February and the GP letter so I am expecting those to arrive tomorrow. Maculopathy in the left eye sounds more likely than retinopathy in both as I've already had lasering about 5 years ago to the left eye.

Anyway, watch this space - it's unnerving not knowing - and even more unnerving when everytime I phone up I get a different story!
 
Big hugs Karen you know where I am anytime that you want to let off steam about this. These letters and appointments are so worrying. I hope that you find that everything goes smoothly for you when you go to the hospital xx
 
What a muddle! I hope it all gets sorted soon, and with the best possible result for you.😱
 
Its such a shame and so frustrating when letters and apts go astray get messed up. When you do go to apt I hope all goes well for you.
 
Thank you all, it's really annoying and no letter has arrived yet. I shall just wait for the appt now, can't be bothered to ring up again! Maybe it will turn up tomorrow.
 
Well the letter has arrived. My right eye is ok - background retinopathy but no maculopathy. My left eye has background retinopathy, M1 maculopathy and P1 photocoagulation.

What is the photocoagulation? Can anyone tell me? Thanks.
 
Sorry Flutterby dont know what it is, I was just wondering have you got your apt then ?, or was it just your results today ? 🙂
 
Thats good Flutterby, try not to worry (easy to say I know). Does someone go with you, I always drag a friend if husband not available 🙂
 
Paul (hubby) is going with me this time. My Dad came along for the last lot of eye appts, they live near the hospital so the idea is he can see me safely back to their place for lunch afterwards - trouble is he always gets lost in the hospital lol.
 
Good thats nice your husband can go with you, though very handy dad lives near to hospital. I prefer to go with a pal so somehow we can wangle a lunch out as well 🙂
 
Totally agree about lunch, each time I've gone to see the DSN lately, Paul and I go for a lovely lunch afterwards, you have to wring every moment of pleasure from these things which are usually far from pleasurable.
 
Good news for me today. I saw the same consultant as last time and she was very reassuring about the condition of my eyes. She could see no reason for the referral and commented that it could happen after the next screening as they seemed to be over cautious but better that way round than the alternative. Either way I am off the hook for 12 months and had a lovely lunch and glass of wine to celebrate.

Oh and I asked about the photo coagulation and it means that lasering has been done - so now you know. Thanks all for your support.
 
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