• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Type 1.5 Retinopathy

C

Chiggie

Member
Messages
6
Type of diabetes
Type 1
Hi, I'm quite new to all this as I was only diagnosed 2 years ago. Decent control, last a1c = 7.2 but varying from 3.2 to 12 on occasions.

My latest eye screening shows signs of "Background Retinopathy".

I thought this was a 20yr+ concern not 24 months. The letter is limited in its information telling me to do all the things that I am already doing.

How worried do I need to be?

Thanks in advance. Chiggie.
 
Crocodile said:
HbA1c 7.2 is not good.
Click to expand...

Its not too bad either, but depends on the type of diabetes and treatment......

Chiggie said:
Hi, I'm quite new to all this as I was only diagnosed 2 years ago. Decent control, last a1c = 7.2 but varying from 3.2 to 12 on occasions.

My latest eye screening shows signs of "Background Retinopathy".

I thought this was a 20yr+ concern not 24 months. The letter is limited in its information telling me to do all the things that I am already doing.

How worried do I need to be?

Thanks in advance. Chiggie.
Click to expand...

This letter is normal and there is nothing to be worried about at this stage......

its quite normal for changes to appear when there has been a quick change in control, either improvements or worsening......

it can settle down and recover......

so as the letter says, keep doing all the things you're doing.......try and minimise the post meal spikes, keep blood pressure stable if there is an issue.....
 
It can disappear altogether if your sugars improve....
 
novorapidboi26 said:
Its not too bad either, but depends on the type of diabetes and treatment......



This letter is normal and there is nothing to be worried about at this stage......

its quite normal for changes to appear when there has been a quick change in control, either improvements or worsening......

it can settle down and recover......

so as the letter says, keep doing all the things you're doing.......try and minimise the post meal spikes, keep blood pressure stable if there is an issue.....
Click to expand...

Thanks that helps, I'm T1 on basal, bolus. Apparently I don't qualify for a pump. I was told by the clinic that 7.2 was good.
 
Chiggie said:
Thanks that helps, I'm T1 on basal, bolus. Apparently I don't qualify for a pump. I was told by the clinic that 7.2 was good.
Click to expand...

I think that the recommended HbA1c is 8 and above.....but there are other ways to qualify, its not limited to just HbA1c level....
 
novorapidboi26 said:
I think that the recommended HbA1c is 8 and above.....but there are other ways to qualify, its not limited to just HbA1c level....
Click to expand...

So my control has to be worse in order to qualify for something that will make it substantially better? That's frustrating.

So if 7 is too high, what is a good a1c?
 
Chiggie said:
So my control has to be worse in order to qualify for something that will make it substantially better? That's frustrating.

So if 7 is too high, what is a good a1c?
Click to expand...

You can get a pump if you are having too many hypos and have maybe lost hypo symptoms and the dawn phenomenon is a factor too.....that was my reason for getting one....

is 7 too high, yes, is it really bad, no.......the recommendation is 6.5% and below I believe.....[I'm so glad someone else is using the original and best way of describing HbA1c ;)]

securing a pump is also helped by attending structured education courses and having proof/evidence of your efforts to gain control...
 
Chiggie said:
So my control has to be worse in order to qualify for something that will make it substantially better? That's frustrating.

So if 7 is too high, what is a good a1c?
Click to expand...
Hi @Chiggie A lot of clinics reckon 7 is good for a type 1. A non-diabetic would be about 5.4.
If your average, whatever it turns out to be, includes readings as low as 1.1 and as high as 32, then this has implications over time.
I had very early laser treatment in both eyes between 1979 and 1983 and continued as a Type1 until 2013, ending in a kidney/pancreas transplant. Although I have retinal scarring in both eyes, I can drive without any form of lenses and only need reading glasses because I am long sighted. It is always alarming when retinopathy is mentioned. As is mentioned above, good balanced control is the main aim to avoid complications. Spanners such as infection, shock or any adrenalised situation will always jam the works and will shove your readings up, sometimes for considerable stretches, but providing you keep a close eye, you have a good chance of escaping. Good luck!
 
Hi @Chiggie I was diagnosed with background about 2 years after I was diagnosed, I put it down to being 'high' for a while before the sudden onset of t1, so I aimed to simply stablise my bg levels and try and avoid the high'low yo yo effect, it worked and the past 3 years it came back as normal, however this year it has returned again, so I am taking this one with a pinch of salt as I am pretty well controlled so may be down to small changes in the eyes.

Getting a pump is of course an ideal situation for you to be in, but you do need to of done Dose Adjustment for Normal Eating first, so get onto your team to sign you up for this. They are lots of reasons why someone can get access to a pump but showing that you are putting in the effort and have a willingness to work at this also helps alot too.
 
Chiggie said:
So my control has to be worse in order to qualify for something that will make it substantially better? That's frustrating.

So if 7 is too high, what is a good a1c?
Click to expand...
Hi Chiggie, I understand that control for T1 is pretty difficult. T2 is hard enough for me. 7.2% may be within guidelines but that's because there are too many diabetics around for individualised programs and budgets. Medicos stick to the generic case. Unfortunately, 7.2% is at a level that in most people will cause complications over the long term. I know it's hard but the lower the better without hypos of course.

I was forced into tighter control myself due to onset of neuropathy. My readings were in the 7's too and I've only managed to arrest the condition since I took a more vigilant and disciplined approach to keep my readings lower. Last one was 5.7% and yes, it has been hard but I'm getting used to it now and my neuropathy doesn't really bother me any more.
Glenn
 
I think your clinic is thinking that 7.2 is quite good because if you are eating standard Uk diet of carbs and matching insulin to them then that is very tricky and for those that achieve a lower 'normal for a human' Hba1c they are paying the price in the form of roller coaster blood sugars or teetering on the edge of a hypos. It is a lot harder for us type 1s to get this balance right and the clinics know it!
Check out DiaTribe's free book 'Bright Spots and Landmines' by Adam Brown which may give you some further ideas.
Incidentally the natinonal standard for type 1s (which in my county only 17% achieve) is 6.5%.
Please don't forget that retinopathy whilst not desirable will most likely respond to laser treatment so the key thing is to keep going to the check ups so that they can compare the progress of any little bleeds. Ditto checking for protein in the urine and looking after your cardiovascular health.
I had it post pregnancy (a time of roller coaster ride blood sugars!) and was unlucky enough to need 2 further operations but have a great if not perfect level of sight after being nearlyblind.
 
I have had background retinopathy at times throughout my 36 years of being Type 1

My last two Eye appointments at the Royal Free have shown the retinopathy to be totally clear to the extent that they actually wanted to discharge me!. Obviously I stated under no circumstances did I want that and they decided to see me again in 12 months time..

Background means exactly that. It is in the background. Good management can reverse it.
 
Back
Top