Background retinopathy

[New-journey]

My BP does that t oo! - though I have to say it hadn't used to, only since I've needed to take BP tablets that it's done that. Whenever it was I had my last D review at the GP surgery it was so ruddy low it was obviously wrong, but fortunately I'd had it taken not ever so long previously so she used that one!

Background retinopathy - had it since the mid 1990s. It's still there. Haven't had a photo this year but had a letter to say as my eyes haven't changed in living memory they wouldn't bother this year. Suits me. Did have photos done with my normal eye test (so no drops) a few weeks ago and she said Oh, there's the sign of a very old bleed at the back of one eye so I asked is it my left eye? Yes - to which I replied That's exactly what my optician saw in his opthalmoscope in 1995 then!

Since then I've had a ruddy great cyst removed from my right lower eyelid and both cataracts done. Nob all else.

Seriously - be concerned, yes. Panic - No!

Was your A1c a typo for 54? If so that is tad higher than they recommend these days but having said that mine is always in the low 50s too and I haven't dropped dead yet either.

No typo, it is a bit low at the moment.
Thanks and panicking has stopped.

 

[Northerner]

Yes, and I love my sensor, and have very smooth control with most days not too high, and not too low, just in the middle! Of course the occasional random high like everyone but normally 85% in target and no bad hypos. My new consultant thinks I am a unusual type one as insulin needs still quite low and thinks I still produce insulin but then there are many of us unusual ones! 🙂

Ah, that's good news - and 85% is excellent! 🙂 I'm a weird Type 1 also - they've done various tests recently and concluded I don't really fit any of the categories! 😱 🙂

 

[Bruce Stephens]

Oh Gosh, hope everything is fine now.

Yes, it was a Cerebellar Haemangioblastoma (spontaneous, they think), so once it was diagnosed (which took longer than it ought to have) routine surgery (as much as any neurosurgery is routine) completely removed it. And this was all years ago now.

 

[Pumper_Sue]

Thanks Sue, you always have a way of speaking such sense! Feeling very relieved and slightly angry that the standard letter is so alarming. .

Someone wrote to the eye screening service here and told them how alarming the letter was due to the way it was written and it was changed. So perhaps a letter to the relevant dept., would help change things for you and everyone else in your area.

 

[everydayupsanddowns]

Lovely to see you again @New-journey

Sorry to hear about the background retinopathy I remember being devastated when I got that letter too - it was worded SO badly!

I have had both ‘all clears’ and another ‘background’ since. Currently ‘all clear’

Hope yours clears up.

 

[Kaylz]

Wish I'd been as lucky as the rest of you to be honest xx

 

[trophywench]

Well the retinopathy service aren't your diabetes team and don't know you have mega low BG - however what if you weren't actually that aware - it's a bit dangerous for opthalmologists to give BG advice.

Has the lowering of your HbA1c happened recently? - because unfortunately dropping BG to much too soon can cause retinopathy, just the same as increasing BG too much can.

 

[New-journey]

Well the retinopathy service aren't your diabetes team and don't know you have mega low BG - however what if you weren't actually that aware - it's a bit dangerous for opthalmologists to give BG advice.

Has the lowering of your HbA1c happened recently? - because unfortunately dropping BG to much too soon can cause retinopathy, just the same as increasing BG too much can.

Nope, been like this for a few years.

 

[New-journey]

Someone wrote to the eye screening service here and told them how alarming the letter was due to the way it was written and it was changed. So perhaps a letter to the relevant dept., would help change things for you and everyone else in your area.

YES! How brilliant someone got it changed. I am writing the letter in my head already and will put it on paper and send it. if I can stop someone else panicking like I did, then I will be happy. It does help to know others felt the same.

 

[New-journey]

Lovely to see you again @New-journey

Sorry to hear about the background retinopathy I remember being devastated when I got that letter too - it was worded SO badly!

I have had both ‘all clears’ and another ‘background’ since. Currently ‘all clear’

Hope yours clears up.

Thanks and good to hear from you. That is encouraging and hopefully mine will be all clear too. I am feeling better that you and others felt devastated too, and I am determined now to get the letter changed for Somerset. If only we could get it changed all over the UK!

 

[New-journey]

Wish I'd been as lucky as the rest of you to be honest xx

Oh Kaylz, was it much worse for you? So sorry.

 

[New-journey]

Ah, that's good news - and 85% is excellent! 🙂 I'm a weird Type 1 also - they've done various tests recently and concluded I don't really fit any of the categories! 😱 🙂

Thanks! I remember you are a weird one! Do you still produce some insulin? At some point my new consultant wants me to have extra tests as she thinks I am weird. Oh well!

 

[Kaylz]

Oh Kaylz, was it much worse for you? So sorry.

A month into my Type 1 I was unfortunate enough to be diagnosed with diabetic macular oedema requiring numerous eylea injections and 2 years later at a check up I was told I required lasering to both for proliferative retinopathy and booked in for ir straight away, I'd almost be glad if all I'd ever received over the years was a background letter no matter how it was worded but then again I've never had the chance to have an annual screening with not being discharged from ophthalmology xx

 

[helli]

it's a bit dangerous for opthalmologists to give BG advice.

My retinal scans are done by the "Diabetes Retinal Screening Service". They are not my diabetes team but you'd hope with "diabetes" in their title, they'd know a bit about it.
I believe they know enough about diabetes to do their job but not enough about human nature to word their letters.
It is a shame they are not synched up with the diabetes teams.

 

[Northerner]

Thanks! I remember you are a weird one! Do you still produce some insulin? At some point my new consultant wants me to have extra tests as she thinks I am weird. Oh well!

Yes, I had a C-peptide test which shows how much insulin your body was producing. It turned out my body was producing more insulin than 95% of Type 1s. We discussed the possibilities of MODY, but I didn't fit any of the characteristics for any of the sub-types, and even neonatal diabetes, which can apparently re-emerge in later adulthood (I had problems when I was a newborn, although I don't think they knew much about neonatal diabetes back then. I'm still classified as Type 1 though, since it's the closest 🙂 It helps a lot with my control, I think, as I don't have to mess about with basal insulin and its unpredictability 🙂 Do let us know when you have the tests, what they conclude 🙂

 

[everydayupsanddowns]

Thanks and good to hear from you. That is encouraging and hopefully mine will be all clear too. I am feeling better that you and others felt devastated too, and I am determined now to get the letter changed for Somerset. If only we could get it changed all over the UK!

I was involved in a piece of work with ABCD (the Association of British Clinical Diabetologists) which raised just this issue, so it is certainly something that has had, and needs attention.

Good luck with your efforts to get things changes where you live 🙂

 

[SB2015]

How lovely to hear from your u again @New-journey
Sorry to hear about the worries you have had around the background retinopathy.

This does sound like a good opportunity to ask about getting the Libre prescribed.
As you say it would be mad to bring your HbA1c below 34, but there is the chance that there are some yo-yo times with higher levels counteracted by lower ones.

Glad you are back.

 

[New-journey]

How lovely to hear from your u again @New-journey
Sorry to hear about the worries you have had around the background retinopathy.

This does sound like a good opportunity to ask about getting the Libre prescribed.
As you say it would be mad to bring your HbA1c below 34, but there is the chance that there are some yo-yo times with higher levels counteracted by lower ones.

Glad you are back.

Thanks and lovely to hear from you again.
I do have a sensor now and my range is pretty much perfect, 85% in target and no big highs or lows, so I did think I was doing well! Yo-yo's very rarely happen, though having written that, who knows what may happen next!.

 

[New-journey]

I was involved in a piece of work with ABCD (the Association of British Clinical Diabetologists) which raised just this issue, so it is certainly something that has had, and needs attention.

Good luck with your efforts to get things changes where you live 🙂

Thanks! I always like a challenge so will let you know. Great you raised it with ABCD so hopefully soon everyone will get a different letter.

 

[New-journey]

Yes, I had a C-peptide test which shows how much insulin your body was producing. It turned out my body was producing more insulin than 95% of Type 1s. We discussed the possibilities of MODY, but I didn't fit any of the characteristics for any of the sub-types, and even neonatal diabetes, which can apparently re-emerge in later adulthood (I had problems when I was a newborn, although I don't think they knew much about neonatal diabetes back then. I'm still classified as Type 1 though, since it's the closest 🙂 It helps a lot with my control, I think, as I don't have to mess about with basal insulin and its unpredictability 🙂 Do let us know when you have the tests, what they conclude 🙂

I will let you know. Great you still don't need basal insulin, and maybe there are many different type ones.