5 weeks diagnosed - already signs of retinopathy

[Annieok]

Hi, I've been following the forum since I was diagnosed on the 1st September. It was quite a shock but my hba1c was 93%; my bp was 161 over 97. My weight was 12 stone and my bmi 30. I was immediately put on 500 mg metformin and 2.5mg Ramipril. That was doubled to 500mg metformin twice a day and 5 mg of Ramipril once a day. I had the usual digestive problems so was then moved to 1000 mg of metformin once a day. I bought a meter, starting testing and cutting my carbs down to under 60grams a day tracking on myfitnesspal. My bg is slowly coming down from between 9 and 12 to 7 to 10 in the past couple of days.

My anxiety levels have been through the roof (not helping with the blood pressure issue) so my gp signed me off work for two weeks. I feel ok physically and am walking 5 miles a day, practising mindfulness and trying to adjust to my new life. However this morning I got a letter saying that my diabetic eye screening test shows that 'You have sight-threatening retinopathy. This means that there were serious changes to the blood vessels in the retina at the back of your eye'. I'm being referred to a specialist to discuss treatment options and this may include laser treatment to prevent sight loss. I will get an appointment within the next few weeks. If I have any concerns, I'm to speak to my gp in the meantime.

I don't have any problems with my vision - the blurriness I had before I was diagnosed seems to have settled down. I'm just freaking out here. I live on my own. I haven't told my family because they live in another country and I didn't want to worry them. I've recently moved to a new part of the country and all my friends are back in London. I have told some friends here who are very supportive but I really am struggling. I think I needed to write this down because my brain can't seem to process it. Has anyone any advice or experience to offer? I dont know if I could cope with losing my sight.

 

[DeejayR]

The worst thing about this at the moment is your anxiety, and you can do something about that. Put your mindfulness into action pronto. You are doing extremely well and can be pleased with all other aspects of your progress.
If I got a letter like that I would be very angry. I would expect a noncommittal letter referring me to a specialist who would then give me the news face to face. It isn't your fault and please try not to worry until you have more info (which will be more helpful anyway).
Who to tell? Perhaps you should rely on your local friends, talk to your best friends in London, but delay telling your family until you have a positive prognosis.
I'm sure you'll get specific good advice on here so I'll shut up. Best of luck.
(Welcome to the forum. Sorry it's distressing to start with!)

 

[noblehead]

Easier said than done but try not to worry @Annieok and see what the Ophthalmology Clinic say , did the letter say you had Background Retinopathy, if it did then the following has some excellent information and advice on the condition:

http://www.diabeticretinopathy.org.uk/back_diabetic_retinopathy.html

 

[Lazybones]

Getting yourself all tensed and worked up won't help in controlling your blood pressure or blood glucose levels, you need to seriously slow down and relax, and take things one day at at a time and even by the hour.
Your already on the right direction as you know what your problems are and are taking the necessary steps to reverse the situation and gain control. It won't happen overnight but with patience you'll get there and in the months/years to come you'll wonder what you were worrying about.
As for you eye problem and the Retinopathy, well it's a common problem that we diabetic have when our blood glucose levels and blood pressure levels are too high. It's probably something that until now you were never aware of as the signs of this eye condition usually tend to develop over a lengthy period of time. The good news is that it's treatable and has fortunately been discovered at this early stage, so there's nothing to get overly worried over. The treatment using a Laser is painless and apart from a few flashes you probably won't know of feel anything, also the success rate is very high if caught early.
You'll learn much from this site, and many type 2 diabetics use the LCHF diet to control their weight as well as their blood glucose, so it's worth looking into this further.
If you have any question please feel free to ask and we'll try our best to help you.

 

[Celeriac]

Recently, I took part in a focus group for RNIB as they are revamping the diabetic eye leaflet and will be launching a helpline for diabetic eye condition advice in January.

In the meantime, you can call the RNIB helpline on 0303 123 9999 Monday - Friday 0845 - 1730 or email [email protected]

As someone newly diagnosed I'm sure it's distressing to get a letter like that. Please be aware that healthcare professionals have a tendency to try to scare you into doing something rather than actually involving you and discussing things.

It also seems like the less knowledge they have themselves the more they try this tactic, so you'll encounter it more from receptionists, admin staff, technicians and nurses than you will from doctors and consultants.

With the letter, you should have been sent an NHS leaflet about retinopathy.

As you are so newly diagnosed, you're supposed to get time to make adjustments with diet and exercise before you get medication but this doesn't always happen. I too got a rash of appointments at diagnosis and got very emotional.

You should ask questions about what the problem actually is i.e. if poss talk to a grader at the screening service/clinic. It may not be as bad as you think. A consultant may disagree with the retinopathy grader's opinion as they always err on the side of caution.

Sometimes, even maculopathy can heal by itself over time, as happened for me, but this is quite rare. But reading up and preparing questions will help you get the most out of your visit with the consultant.

 

[Annieok]

thank you everyone for taking the time to reply. I went for walk, cuddled my friend's new puppy and had a good cry with him. I know that I'm prone to rushing to the worst possible conclusion. So trying to keep calm, focus on the things I can control and be patient with myself is what I need. As Lazybones said, take it an hour at a time if necessary. I'm going to tell my brother tonight I think. There's a whole pile of family drama that I've been trying to avoid but I realise that it would be good to have people in my corner supporting me. Even if it's at the end of a phone.

 

[ButtterflyLady]

I agree with all the suggestions above and I just want to mention about the high blood pressure. Have you had it checked since the ramipril dose was increased? The recommended max BP for diabetics is 130/80 and I get checked whenever I see my doctor or nurse. I agree that with blood glucose levels its ok to wait 3 months to see if you can reduce them yourself but with BP I think meds are appropriate, especially if it's as high as yours was.

You sound like you are doing all the right things and you should have diabetes under control within a relatively short time.

 

[Kazz94]

Annieok, look up Jason a Fung on youtube. He talks about curing diabetes and it really helped to calm me down. Was only diagnosed yesterday and still coming to terms!

 

[Annieok]

I agree with all the suggestions above and I just want to mention about the high blood pressure. Have you had it checked since the ramipril dose was increased? The recommended max BP for diabetics is 130/80 and I get checked whenever I see my doctor or nurse. I agree that with blood glucose levels its ok to wait 3 months to see if you can reduce them yourself but with BP I think meds are appropriate, especially if it's as high as yours was.

You sound like you are doing all the right things and you should have diabetes under control within a relatively short time.

Thanks CatLadyNZ.
I'm having a check of the meds and another blood test on Friday (and a pneumonia vaccination and a smear test because they want to get me up to date with everything!) with the Diabetes nurse. I've been off work now for nearly two weeks, getting my head around testing, getting plenty of exercise, working out my diet and getting used to taking tablets. My brother came for a few days and was great and very supportive. I don't know why I didn't want to tell him! His wife is a nurse and she went through all my test results and was very reassuring. I've got an appointment with the consultant opthamologist on Wednesday at Halifax to discuss treatment options. They really are not hanging around which is good but also quite scary in that I seem to be top of the list.

My feeling is that I've been undiagnosed for quite a while as I've felt quite **** for a long time but just battled through. I now realise that all the small things that were annoying me - blurriness, fungal infections, thrush, etc were actually symptoms. I'm a bit worried about some tingling in my toes but that might be psychosomatic, given the amount of research I've been doing. I'll discuss that with the nurse on Friday as there has been no sign of a podiatry appointment.

I'm fully on board with the HCLF diet and seem to be getting my BS down very slowly. I know it's going to take time but I still get the occasional 11 first thing but managed a day of 7s and even a 6.5 on Sunday when we did a 10k walk up with some pretty steep hills! It's good for my mindfulness practice to just focus on today and the here and now. It helps me make good decisions, even when I ended up Home Sweet Home in Manchester for tea the other night and had to ask for so many tweaks to my order, something I would have never have done in the past. Instead of sweet potato fries, I had extra salad and some coleslaw. And a cup of herbal tea instead of a milkshake. And no bun on my fish burger. I did steal one chip and a bite of someone else's ice cream but my BS only went up 2 points after 2 hours so not bad.

 

[Annieok]

I posted this elsewhere but just in case, here it is again: I met the consultant this morning and he confirmed there is damage to both eyes but that it's not sufficient to require laser treatment at the moment. I'm to go back in 3 months to see how it is going. As I have been only recently diagnosed 7 weeks ago, he's keen for me to have a chance to get my blood sugar more stable and to get my blood pressure down. The damage is to my central vision but he didn't really explain anything further. So huge relief and quite a funny walk back to the train station from the hospital in Halifax with numbed up eyes and dilated pupils.

 

[rosserk]

I posted this elsewhere but just in case, here it is again: I met the consultant this morning and he confirmed there is damage to both eyes but that it's not sufficient to require laser treatment at the moment. I'm to go back in 3 months to see how it is going. As I have been only recently diagnosed 7 weeks ago, he's keen for me to have a chance to get my blood sugar more stable and to get my blood pressure down. The damage is to my central vision but he didn't really explain anything further. So huge relief and quite a funny walk back to the train station from the hospital in Halifax with numbed up eyes and dilated pupils.

That's brilliant news! if you can get your blood sugars down then you should be able to fend off any future complications with your vision. Just keep clear of those carbs!!

 

[Annieok]

That's brilliant news! if you can get your blood sugars down then you should be able to fend off any future complications with your vision. Just keep clear of those carbs!!

Thanks! Im trying to stay under 50g of carbs a day but this is a great motivator!

 

[rosserk]

Good luck, it sounds like you've already had some improvement because you're no longer having the blurred vision so you're on the right track!

 

[himtoo]

Hi Annieok
totally motivating is your post and that you have the opportunity to keep this well controlled -- stick with everything your meter tells you and you won't go far wrong.
I have had some retinopathy issues so know where your motivation stems from.

all the best !