Back to clinic

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cgold1995

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Type 1
Hi guys

I'm planning on calling the doctors tomorrow to get back into diabetic clinic after a few years away and I'm absolutely terrified!

I've had type one since 9 months old, I'm almost 27 now and I've had little to no complications in all that time. Earlier this year I went for an eye test and they told me off as I haven't been for a while and there's been some changes to my retinopathy. I've not had any letters or anything through and this was 6 months ago so I assume I just go again next year as normal. My sight is the main thing bothering me, its fine however I do have eye floaters from time to time, and sometimes a slight flickering, especially when my blood goes low.

If I do need laser therapy, what are the odds that I will have the blind spot side effect? How badly would this affect my sight? I'm probably overthinking!

While I rarely rarely miss insulin, my control could be better and I'm hoping I'll be able to get a libre as finger pricking is the thing I hate most these days, which leads to me not testing frequently.

If anyone can shed any light on the above it would be much appreciated!

Thanks guys
 
Hi @cgold1995 and welcome,

First up don't be terrified. If you're referred to the hospital clinic then they'll be there to help you & discuss ways for you to manage your diabetes with different insulin, tech etc if appropriate.

Was the eye test you went to a routine optician self arranged I need glasses type appointment or was it the retinopathy screening appointment from the NHS Screening programme. If it was for NHS screening you would have received a letter by now saying eg no changes, some slight changes or if necessary confirmation that you will receive a hospital follow up clinic appt.

Retinopathy is silent until it reaches a certain level when physical changes start to happen, this often can mean retinal haemorrhages - blood inside your eye from fragile vessels bleeding - that is the first sign I knew something was wrong - this was in the 1980's pre retinal screening that is why regular screening is so vital to spot early changes and treat them to protect eyesight as much as possible. Hypos can cause visual disturbances like flashing so it may be that but if you are concerned ask again for a check up at your optician.

I would find out what the eye test results were and if it wasn't NHS screening I would get in touch and request a screening appointment. Don't overthink it all, hopefully if you get back in the system again you will get good care and it will put your mind at rest.

I'm not sure if your GP can prescribe Libre now - may be wrong on that - otherwise to get started you can request a 2 week trial if you meet criteria and have a compatible phone details here.
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I'm not overly bothered regarding a CGM, i know the Nhs has recently agreed a deal to roll these out to everyone with type 1, but a flash monitor will do - my sister has one of these (she's been type one for 2 years) and it's helped her massively. Will I qualify for a flash monitor, not at my GP but if I ask when I go to diabetic clinic? I've had diabetes for 26 years and quite frankly, my fingers hurt now

With regards to my eyes, i did need some new glasses but they just did the retinopathy scan anyway, after the normal eye test. She told me to make sure I get seen regularly because I had left it 4 years since my last retinopathy test (oops), but I haven't seen a letter come through, I may have misplaced this. If it was as serious as needing a hospital appointment though, I would imagine they would have called me? My local GP texts me to remind me to book in for eye screenings and diabetic reviews. But time to stop ignoring them and grow up now I think!
 
cgold1995 said:
Will I qualify for a flash monitor, not at my GP but if I ask when I go to diabetic clinic?
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You should, yes! You meet all the criteria of the new NICE guidance (having Type 1 diabetes is the only criterion) so there shouldn't be any question. (It's possible there are local funding issues, but even if there are it's worth challenging and Partha Kar has repeatedly said he's fine helping with that, one person at a time if necessary.)

The terminology has evolved slightly in that what used to be Flash is also CGM, so we now have rtCGM and isCGM for real-time updated CGM (like Dexcom ONE) and intermittently-scanned CGM (like Libre 1 and 2). (Those are the abbreviations used in the NICE guidelines, and I think they're used elsewhere too.)
 
Libre is great if you understand the limitations (these have been mentioned many times on the forum) but it does not replace all finger pricks.
The main thing is to test with a finger prick before correcting a high or low (unless you feel an obvious hypo) and if you feel different to what the sensor is telling you.
 
cgold1995 said:
With regards to my eyes, i did need some new glasses but they just did the retinopathy scan anyway, after the normal eye test. She told me to make sure I get seen regularly because I had left it 4 years since my last retinopathy test (oops), but I haven't seen a letter come through, I may have misplaced this. If it was as serious as needing a hospital appointment though, I would imagine they would have called me? My local GP texts me to remind me to book in for eye screenings and diabetic reviews. But time to stop ignoring them and grow up now I think!
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if you haven’t had the retinopathy screening for 4 years then no they wouldn’t have called you if you need treatment now, because you haven’t been to the screening so they wouldn’t know whether you need treatment. However it is reassuring that you’ve been to the opticians as they could have referred you to the hospital if they were concerned.

If you google diabetic retinopathy screening service and your local area does any info come up telling you who to get in touch with to arrange screening?
 
Lucyr said:
if you haven’t had the retinopathy screening for 4 years then no they wouldn’t have called you if you need treatment now, because you haven’t been to the screening so they wouldn’t know whether you need treatment. However it is reassuring that you’ve been to the opticians as they could have referred you to the hospital if they were concerned.

If you google diabetic retinopathy screening service and your local area does any info come up telling you who to get in touch with to arrange screening?
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Hi Lucy, I have had the retinopathy screening. Nothing was said at the time that I needed further treatment. But if a letter was missed and I did need a hospital appointment, surely that would have been communicated to me by now. Especially as I've been in touch with my GP re other things? Sorry, hope I've made it clear lol!
 
cgold1995 said:
Hi Lucy, I have had the retinopathy screening. Nothing was said at the time that I needed further treatment. But if a letter was missed and I did need a hospital appointment, surely that would have been communicated to me by now. Especially as I've been in touch with my GP re other things? Sorry, hope I've made it clear lol!
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When was the last retinopathy screening you attended (not the one at the opticians where they check if you need glasses)?
 
cgold1995 said:
It was the same time. They gave me both on the same day. So 6 months ago.
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So you get your NHS retinopathy screening at your opticians? Is this your official retinal screening or just an additional service the opticians provide. Most of us are invited to a hospital or other NHS facility for our official retinal screening.

You should always get a letter from the NHS retinal screening service within a few weeks of your screening to either say that there are no changes or that you have some changes and what action if any needs to be taken. If you have not had a letter then I am wondering if this isn't NHS screening in which case you need to contact the NHS screening service and get an appointment with them to get checked out.
 
rebrascora said:
So you get your NHS retinopathy screening at your opticians? Is this your official retinal screening or just an additional service the opticians provide. Most of us are invited to a hospital or other NHS facility for our official retinal screening.

You should always get a letter from the NHS retinal screening service within a few weeks of your screening to either say that there are no changes or that you have some changes and what action if any needs to be taken. If you have not had a letter then I am wondering if this isn't NHS screening in which case you need to contact the NHS screening service and get an appointment with them to get checked out.
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Depends on area. I got a letter from NHS with a reference number, but all my options for places to get my retinopathy screening are high street opticians
 
42istheanswer said:
Depends on area. I got a letter from NHS with a reference number, but all my options for places to get my retinopathy screening are high street opticians
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Presumably you do get a follow up NHS letter each time though telling you what the result was and what if any action is needed.
 
rebrascora said:
Presumably you do get a follow up NHS letter each time though telling you what the result was and what if any action is needed.
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Not sure, I've not had it yet
 
I had them at specsavers for years, they are definitely retinopathy screenings. I've never had them at the hospital, I live in Manchester, and yes I've had the letters before stating no changes etc but none this year, unless like I've said, I misplaced the letter by accident. But I've not opened one.

Anyway even if it was ok/no changes, I'm going to mention it when I go for my diabetic review as I think it would be silly not to. My vision is fine right now but from what I've read, people can just wake up with their vision being the complete opposite of fine..so i don't want to take my chances, no matter how scared I am of what may come (injections and lasers so I'm told!).

Number one priority either way is getting my hba1c in target range
 
Hi @cgold1995 and welcome to the forum

If they are doing the screening at the opticians, is this where they are putting drops in (you will know if they have!!!!) then taking pictures of the back of your eye. This is very different from the opticians check that I have, and are done at a special clinic. I know that things vary in different areas. With something so important I don’t rely on them sending me letters, as it is possible for people to fall down cracks. I tend to put it in my diary for a year on and if I haven’t heard anything by then chase it up. I know this last two years there was a bit of a drift but they have caught up now in our region.

The Libre (isCGM) can be a game changer for people. I know it had a big impact on me as it enabled me to head off many lows and highs before they became a problem, and certainly increased my Time In Range.

Keep in touch and let us know how you get on.
 
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