Retinopathy

[HelenCloud]

Hello! I've had type 1 diabetes for over 20 years now but only just joined here, don't know why I didn't think of it before! Was told at the hospital today that I need laser treatment in both my eyes, and that this can damage peripheral vision to the extent it may prevent me driving. This was quite a blow. Also that the laser reduces risk by 50%, the other 50% is down to blood glucose control, which I do find difficult. Just feeling a little lost, wondered if anyone has experienced this and could offer any advice. Thank you

 

[mikeyB]

Hi Helen, welcome to the forum. At last🙂

The first thing to say is that there is no doubt you need the treatment, that’s a given. But doctors always have to give you a worst case scenario. It may damage your peripheral vision, but the extent is by no means predictable, so postpone the worry on that issue if you can.

The second thing is, as you say, diabetic control. That’s where we come in with advice, so if you could describe the problems you have with that, there will be a torrent of advice on how set things right. Fire away🙂

 

[HelenCloud]

Thank you, your message is a real comfort. Great to hear from others with diabetes rather than doctors telling you what's black and white, what about the grey areas?! I think my control problem comes down to both dosage and timings. Don't spend long in the 5 to 7 range, it shoots up and drops down, not sure how to keep it steady. I'm on Novorapid and Tresiba. Thanks again

 

[Bruce Stephens]

Don't spend long in the 5 to 7 range, it shoots up and drops down, not sure how to keep it steady. I'm on Novorapid and Tresiba. Thanks again

Probably it's partly information: if you use something like Freestyle Libre (or a CGM) you'll see much more information about what's happening with your blood glucose. Partly also understanding: if you haven't been offered modern style education (the best known being DAFNE) then ask for it. (Don't assume it's not useful because you've had diabetes for 20 years. Things have moved on. NICE recommends that it should also be available to people who've had diabetes for some time.)

(Partly I'm sure it's luck: some people are more stable than others. Some people seem able to handle a low-carbohydrate diet which I suspect makes things easier on average (because you need less insulin) but I suspect I like food too much for that...)

 

[HelenCloud]

Hi Bruce. Absolutely agree, I spent a long time hardly ever checking my blood because I was scared of what I'd see, so bought a sensor about 2 weeks ago and it is a game changer! Thanks for the advice on the DAFNE course, I will follow that up and try to get booked onto one

 

[Kaylz]

Hi and welcome to the forum 🙂

I've not even been at the diabetes game for 3 years yet and I've been very unlucky and had my fair share of diabetes eye related problems already, I was diagnosed with diabetic macular oedema only a month after being diagnosed as Type 1 so went through countless eye injections in both eyes for that, I then had to have lasering last November to both eyes, it isn't all down to blood glucose levels it can just be an unfortunate unlucky run
xx

 

[SB2015]

Hi Bruce. Absolutely agree, I spent a long time hardly ever checking my blood because I was scared of what I'd see, so bought a sensor about 2 weeks ago and it is a game changer! Thanks for the advice on the DAFNE course, I will follow that up and try to get booked onto one

Welcome to the forum Helen.

I cannot help with any information about the laser treatment on your eyes, but @mikeyB has addressed that.
With regard to improving your control, it is great to hear that you have got a Libre. It shows you exactly what is happening between meals, (and for me when I first used one it was a shock to see how big my spikes were). With this information you can start to make changes.

From what you have said I can think of three things that might help, and it may be good to change one thing at a time so that you can see the impact and make further adjustments, before changing the next.

Basal insulin
Others on here emphasised to me the importance of getting this sorted first. Have you done a fasting test to check your dosage of basal insulin? The Libre makes this a lot easier to do, especially over night.

You mention that you use Trsiba as your Basal insulin. Do you split this and take it morning and evening? (I am not familiar with the profile for tresiba, and not sure whether this is one that is good to split. If not there is Levemir). The split basal allows you to make separate adjustments for the day and night, and this can help to get a flatter graph. I did this swap and it improved my control both during the night and day. Talk to your DSNabout this if you are not already splitting.

Have you thought about asking for a pump? This switch for me reduced night hypos as I was able to adjust my basal insulin to match what I needed hour by hour and I was able to alter doses by miniscule amounts.

Timing of Bolus
The Novorapid takes a while to get through to the blood to sort out our glucose. Using a bit of trial and improvement you could start to adjust when you deliver your insulin for meals. I started with breakfast and pre-bolused by 15 minutes to start with, kept a watch on my levels before and after, then adjusted as necessary. I can now get a small Lakeland fell after breakfast, rather than a Himalayan peak!! This is harder at other mealtimes for me as I do not have a set routine and I don’t do this if I am eating out as I have no idea when the food will arrive.

Carbs and foods
I was eating any number of carbs at meals and the Libre showed me the impact of these, and also that some foods that I had thought were ‘good’ for me (porridge) just sent my BG high. We have adjusted our carbs to a target for each meal (it is a target so gets missed sometimes!!) and some foods I just don’t eat anymore.
Again, as with all that is Diabetes, it is a case of finding what works for you.

I hope that helps

 

[Kaylz]

You mention that you use Trsiba as your Basal insulin. Do you split this and take it morning and evening? (I am not familiar with the profile for tresiba, and not sure whether this is one that is good to split. If not there is Levemir). The split basal allows you to make separate adjustments for the day and night, and this can help to get a flatter graph. I did this swap and it improved my control both during the night and day. Talk to your DSNabout this if you are not already splittin

Tresiba is recommended you don't split it, it has supposedly a 24 hour + effect flat profile, it makes spur of the moment exercise very difficult (I've learnt the hard way lol) it's adjustments are also very frustrating as general advice is to adjust 1 unit at a time every 3 days xx

 

[SB2015]

Tresiba is recommended you don't split it, it has supposedly a 24 hour + effect flat profile, it makes spur of the moment exercise very difficult (I've learnt the hard way lol) it's adjustments are also very frustrating as general advice is to adjust 1 unit at a time every 3 days xx

Thanks Kaylz.
@HelenCloud , with Kaylz’s info it sounds like a switch to !evemir would be needed if you want to try splitting your basal insulin.

 

[Flower]

Hello and welcome @HelenCloud 🙂

Sorry to hear you're having problems with retinopathy.

For the first maybe 5 laser sessions on both eyes I didn't really notice much of a change in my peripheral vision, there were enough functioning cells to overcome the lasered areas. Be prepared that you might need multiple laser sessions on each retina as there's a maximum number of burns that can be done each session to prevent inflammation. Laser does make your eyes light sensitive and mine felt quite grainy and sore for a few days but did settle. My Consultant told me when I had reached the level at which I could no longer drive but it was not straight away.

This site is really useful for information http://www.diabeticretinopathy.org.uk/laserdiabetic_retinopathy.html scroll down a bit for the information on proliferative retinopathy laser.

Rapid tightening of control can perversely increase the progression of proliferative retinopathy so please speak to your eye consultant and diabetes team about the best way to improve your control without making things potentially more difficult. Keep a watch on all the usual suspects we have to juggle, blood pressure, cholesterol etc as they are all important in retina and blood supply health.

I wish you well, the treatment is effective, don't despair about all the what ifs. Do all you can to get things under the best control you can but don't set out to rapidly decrease your HbA1c too fast. Best Wishes.

 

[everydayupsanddowns]

Welcome to the forum @HelenCloud - glad you have found us.

Sorry to hear about your retinopathy, and best wishes for your treatment. It’s important that Drs tell us the risks, of course, but sometimes I do wish they would appreciate how frightening some of their (factually correct) warnings might be to the person.

We have several members here who have had very successful laser treatment, which has helped them to retain their sight and helped treat the damage that diabetes has caused.

We also have members who have improved their blood glucose management and have seen some changes to their eyes improve or disappear (I’ve had background changes spotted a couple of times but am currently ‘all clear’).

You’ve already had some great information and suggestions about steps you can take to brush up on your pancreas-impersonation skills, so do keep asking questions (and ranting or celebrating!) as you try those out. It’s what we are here for!

If you’ve never been offered a structured education course in intensive insulin therapy (like DAFNE) and if there is any delay in being offered a place you can start straight away with Bournemouth’s BERTIE course which is freely available online here: www.bertieonline.org.uk

 

[HelenCloud]

Hi and welcome to the forum 🙂

I've not even been at the diabetes game for 3 years yet and I've been very unlucky and had my fair share of diabetes eye related problems already, I was diagnosed with diabetic macular oedema only a month after being diagnosed as Type 1 so went through countless eye injections in both eyes for that, I then had to have lasering last November to both eyes, it isn't all down to blood glucose levels it can just be an unfortunate unlucky run
xx

I'm sorry to hear about your eye problems, thank you for sharing this

 

[Kaylz]

I'm sorry to hear about your eye problems, thank you for sharing this

thanks, the guys on here know all too well about it lol, I'm only 27 and have had a lot to deal with since my diagnosis but hey I'm still plodding on 🙂 xx

 

[HelenCloud]

Thank you all so much for your support and wealth of advice and experience. It means a lot coming from people in a simar position to me. I have an appointment with my diabetes specialist on 9th July so will ask about a course, and many other questions! 🙂

 

[everydayupsanddowns]

Hope it’s a good appointment - keep us posted 🙂

 

[SB2015]

Thank you all so much for your support and wealth of advice and experience. It means a lot coming from people in a simar position to me. I have an appointment with my diabetes specialist on 9th July so will ask about a course, and many other questions! 🙂

I look forward to hearing about w the appointment goes. One thing that I found very useful in the early days when my head was full of so many questions was to take someone with me to my appointments.

I talked to them beforehand, and wrote down the questions that I had. This enabled me to have a conversation with the consultant, whilst my OH took notes, and prompted me if I forgot to ask anything. We then went for a coffee afterwards and clarified what I had heard and the notes. We then made a list of even more questions which I was able to email to the consultant.

We still do this for each other for any new appointments. The consultants never mind.