Retinopathy Anxiety

Type2_2000

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Hi I’m a first time poster on this forum and I’m really sorry that my first post can’t be more positive or a beneficial contribution to this community.

Just a little background about me before I unleash my anxieties.

I’m 38 and I’ve been type 2 since 2000. I hadn’t really taken my diabetes seriously until 3 years ago. Before that my hba1c’s would have run between 11 and 14 except for brief periods of good behaviour when my hba1c would go down to 6 or 8 within a couple of months. In 2010 I began to use Liraglutide (1.2) and 2000mg of Metformin per day. At the time my Hba1c dropped from 12 to 8.8 to 6.1 in the space of 5 months and over the next couple of years they were between 5.7 and 6.1. I also manage hypertension with meds: sometimes my BP is good at others not so. I’ve had background Retinopathy since 2006 and recently signs of mild pre-profilerated Retinopathy were discovered in one of my eyes. I had my latest appointment with an Eye Doctor last week. There isn’t anything that needs treatment yet, but I do need to have another check in 6 months.

Here’s the thing. During the end of last year my dietary control slipped and when I was reviewed in mid-March my hba1c was 10ish (88 in new money). That was 6 weeks ago and my Diabetes Consultant gave me a pep talk and sent me off motivated to regain sugar control. He wanted me to see if I could regain control with diet modification for a few months without changing meds. I put my self on a diet and a little more exercise and in 6 weeks so far I’ve dropped 8kgs and my bp is running much lower – 130/70 region. I really haven't made radical changes. Here’s the bit that has me terrified. I do weekly finger prick blood tests. Four a day, pre meals and then at bedtime. When I started 6 weeks ago the range for that first day was a high of 12 and low of 8.6. Over the next couple of weeks they gradually came down and then last week they were between 7.3 and 5.8. Today they have been mid-fives and low-sixes. My average overall for the last 6 weeks is 8.4.

I’ve been reading that blood sugars lowered too rapidly can make Retinopathy worse. I did ask my Eye Doctor about this last week and he said that concern only really applies to extremes (e.g. going from high teens to low fives in a couple of weeks). His view was that if I went from a 10 to 6/7 over three months probably wouldn’t do me any harm. My anxiety is that I’ve already lowered my bloods too quickly and I’m terrified that my Retinopathy is going to get worse. Some websites like the Medweb site make it sound certain that its going to get worse whilst others suggest it’s happens quite rarely and that there’s not certainty that lowering sugars gradually might have the same effect anyway. It’s all just so scary and confusing.

I’m really not sure what to do and I’m just so scared of loosing my sight. Is there any advice? My head is spinning. I managed to talk to a Diabetes specialist nurse today and she said that whilst it wasn’t ideal she felt it would ‘probably’ be okay and that I should do more frequent blood tests to make sure I don’t get into hypos.

How long does it take to go blind?

Sorry I can’t be less flaky.

Thanks for reading.
 

noblehead

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Well the weight loss and drop in bp will undoubtedly help matters, as for the change in your bg control and the time frame in which you have done it I really can't comment, the opinion is that you should improve your diabetes control when you have diabetic retinopathy but this should be done over a longer period of time if control has been bad, my own Opthamologist did say this to me when my retinopathy progressed and it often gets mentioned on websites when you research Diabetic Retinopathy.

Hopefully you'll be OK and no damage has been done, if your really concerned you could ring the Ophthalmology clinic up and ask that your next appointment is brought forward.

Good luck and hope all is well!
 

Type2_2000

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Many thanks for the reply. I did a rough analysis using my home results and kind of projected over three months and using a calculator from this sight, the suggestion is that over a total of 3 months my Hba1c would go from 10 to about 7.6 if I manage things.

My plan is that I'm due to see my Diabeties Consultant in 5 weeks, anyway, when I'll have a blood test. If things are radically different I'll get his opinion and then see if I need to bring forward my eye specialist appointment. Does that sound sensible or should I act sooner?
 

hanadr

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You say you've loweed your blood pressure.
That should help control the retinopathy. Lower pressure through the small blood vessels of the retina, will help protect them from leaking.
Hana
 

noblehead

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Type2_2000 said:
My plan is that I'm due to see my Diabeties Consultant in 5 weeks, anyway, when I'll have a blood test. If things are radically different I'll get his opinion and then see if I need to bring forward my eye specialist appointment. Does that sound sensible or should I act sooner?


Yes I think that's sensible, they can examine your eyes and advise you if you need to see the Ophthalmologist sooner or wait until your appointment comes up.
 

Type2_2000

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Noblehead: Thank you so much for your response. I actually had an eye exam last Thursday so I guess there wouldn't be much point in rushing back this quickly.

Hana: Thank you for your reply also. I've really worked hard to reduce my salt intake and also exercise more so that's helping on the BP front. Also I've always been lucky with Cholestorol and so I only have to take a low dose of Statin. So I guess I have a bit of a fighting chance on those fronts.
 

Type2_2000

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Just wanted to update my thread. I had a blood test last week and my Hba1c has come down to 48mmol. Slightly anxious as back in March it was 88mmol. I spoke to my eye clinic and they've agreed to see me next week for a check up. Wish me luck!


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noblehead

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Type2_2000 said:
Just wanted to update my thread. I had a blood test last week and my Hba1c has come down to 48mmol. Slightly anxious as back in March it was 88mmol. I spoke to my eye clinic and they've agreed to see me next week for a check up. Wish me luck!


That's an Hba1c of 6.5 which is a big improvement, hopefully all will be well next week and I'll keep my fingers crossed for you :)
 

Thundercat

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Well done on all the work you've done on bp and bg. Best of luck with yoir eye exam next week. I hope all is well for you

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Type2_2000

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Just wanted to update my thread.

I had an eye exam this morning. Happily there are no signs of deterioration as yet and things are stable for now.

I have to go back for another check up in 6 months time. The doctor was happy that, with eye exams every 6 months, he could stay on top of my condition and I could still have good outcomes if things do get worse. I was seen by the same doctor as the last time so it was good to have that continuity. I've googled him and he's actually a highly regarded expert in retinal disease, so that's reassuring.

Who knows what'll happen over the next 6 months, but I'm going to try and enjoy the summer without worrying about my eyes so much. First step is tomorrow morning: I'm going to swim for the first time in 20 years!


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Thundercat

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Excellent news! I'm absolutely thrilled for you. It can be hard not to worry about all the "what ifs" just try to keep your bg in healthy range and enjoy your summer.

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Sarahfergo

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Hi I'm type 1 and have been for 20 years, I went to the opticians as my sight in my left eye isn't do good. When they did the photo of the eye nothing showed up but when they looked in it with a light thing they said the is small cysts in my eye ball so have sent me to an emergency appointment at the hospital which is this thurs I'm so scared what they will say. Does any one have any ideas what this is?


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Type2_2000

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Hi. I'm so sorry to hear about your eye troubles. This must be such a hard time for you. Unfortunately, I don't know anything about the particular problem that you have. Hopefully replying will bump this thread so that others may see it. Do try not to worry too much. The one thing that people on this forum will tell you, I'm sure, is that we have some really skilled doctors who'll do all they can to help you. One piece of personal advice I'd offer you is that in this situation, where you're not sure about what's happening, is try not to do too much Internet research. There is so much information out there and much of it may not apply to you. I did that and it made me very anxious when I didn't need to be. Please try to relax and do let us know how things go. Hopefully someone will be along with a bit more helpful info for you.

Take care


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Jamanda

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I went for my retinal screening last month, and on the day the opthamologist said it all looked clear as she has done every time before. My follow up letters have always confirmed no signs too. Yesterday I got a letter saying there were signs of mild diabetic retinopathy, but that it was stable. I'm slightly concerned about how it can be "stable" when it has gone from "no signs" to "mild". My sugar is under control with a bit of metformin and a lot of gym and walking. My cholesterol and BP are good with the aid of meds too. I was planning on a trip to spec savers soon any way, but I don't expect them to be experts on this. Should I make an appointment with the GP? Is this a reasonable thing to be worried about? I've looked at the advice on the various website and I do everything they suggest already.