I think complications are finally happening to me

[RobertJ]

Over the last year I noticed floaters in my vision, which have never gone away since they started. Tests from opticians concluded it may not be diabetes and my eye screening simply resulted in a letter saying I had background retinopathy, which I already had. I mentioned floaters to the woman carrying out my eye-screening but she didn't want to get drawn in to a discussion and told me to wait for my letter.

In the last few days, something else has happened. I've noticed this strange burning sensation on my left foot. I was hoping it was some kind of muscle problem (that could be cured) but some Googling has suggested it's probably diabetic nerve damage and, ultimately, the start of what leads to amputations.

My GP surgery is not taking any new enquiries, so that avenue is closed. It may as well not exist, it's so useless. What do I do in this situation? Just ring the Diabetic Clinic.

I used to imagine I'd have an interesting, rich life and have a family. If my body is shutting down at 33, I'm not sure that would even be responsible.

I was moved onto a pump at the end of June but, sadly, I just can't hack it properly. My control has been worse since then and my average glucose over the last 90 days is 7.7 and my time in range is 78%.

 

[holdem]

Im not a Dr Robert but stay positive and get to see a specialist soon.

Time in range of 78% and a 90 day average of 7.7 sounds amazing control

There may be many things that are impacting your feet other than your diabetes.

God bless you mate

 

[AndBreathe]

Over the last year I noticed floaters in my vision, which have never gone away since they started. Tests from opticians concluded it may not be diabetes and my eye screening simply resulted in a letter saying I had background retinopathy, which I already had. I mentioned floaters to the woman carrying out my eye-screening but she didn't want to get drawn in to a discussion and told me to wait for my letter.

In the last few days, something else has happened. I've noticed this strange burning sensation on my left foot. I was hoping it was some kind of muscle problem (that could be cured) but some Googling has suggested it's probably diabetic nerve damage and, ultimately, the start of what leads to amputations.

My GP surgery is not taking any new enquiries, so that avenue is closed. It may as well not exist, it's so useless. What do I do in this situation? Just ring the Diabetic Clinic.

I used to imagine I'd have an interesting, rich life and have a family. If my body is shutting down at 33, I'm not sure that would even be responsible.

I was moved onto a pump at the end of June but, sadly, I just can't hack it properly. My control has been worse since then and my average glucose over the last 90 days is 7.7 and my time in range is 78%.

Robert, can I ask you what it means that your GP isn't taking any more enquiries. Does that mean they don't have any spaces today, or they are declining to help you in some others way?

Secondly I would urge you not to go down the gloom and doom route. Our imaginations don't always help is remain upbeat.

Finally, I'm not T1, but have been on-forum almost 10 years and I can confidently say there are lots and lots of folks out there who would be over the moon to have the average blood glucose and time inrange you do.

Don't think I'm telling you to get a grip. I'm not, but it sounds like a few things are just piling in for you.

If your GP won't, or can't see you, is there the option to contact your clinic and talk to someone there?

I do hope you're feeling a bit more positive soon.

 

[In Response]

I was moved onto a pump at the end of June but, sadly, I just can't hack it properly. My control has been worse since then and my average glucose over the last 90 days is 7.7 and my time in range is 78%.

The NICE guidelines are for 70% or above in range. My understanding is that above that the benefits are diminishing when considering the additional cost (mental health) to achieve it.
I don't know what you experienced pre-pump but you results at the moment are good and are unlikely to be contributing to any complications you are expecting now.

 

[Jaylee]

Over the last year I noticed floaters in my vision, which have never gone away since they started. Tests from opticians concluded it may not be diabetes and my eye screening simply resulted in a letter saying I had background retinopathy, which I already had. I mentioned floaters to the woman carrying out my eye-screening but she didn't want to get drawn in to a discussion and told me to wait for my letter.

In the last few days, something else has happened. I've noticed this strange burning sensation on my left foot. I was hoping it was some kind of muscle problem (that could be cured) but some Googling has suggested it's probably diabetic nerve damage and, ultimately, the start of what leads to amputations.

My GP surgery is not taking any new enquiries, so that avenue is closed. It may as well not exist, it's so useless. What do I do in this situation? Just ring the Diabetic Clinic.

I used to imagine I'd have an interesting, rich life and have a family. If my body is shutting down at 33, I'm not sure that would even be responsible.

I was moved onto a pump at the end of June but, sadly, I just can't hack it properly. My control has been worse since then and my average glucose over the last 90 days is 7.7 and my time in range is 78%.

Hi Robert,

From my experience you won’t get any feedback from the trained operator of the eye scanner…. They are just the “shooter.”
I would recommend following your issue up with the eye consultant.? They are the ones with the real expertise…

Your TIR doesn’t look like a disaster to me..

Your recent foot issue. Googling “stuff” with the bias of this condition can throw up a fair few negatives that will give you old news based on statistics from an era when folk like me were treated on set dosage with porcine insulin, peeing in a test tube…

Book to see your endo. Have you got a line to your DSN?

Best wishes.

 

[RobertJ]

Robert, can I ask you what it means that your GP isn't taking any more enquiries. Does that mean they don't have any spaces today, or they are declining to help you in some others way?

Secondly I would urge you not to go down the gloom and doom route. Our imaginations don't always help is remain upbeat.

Finally, I'm not T1, but have been on-forum almost 10 years and I can confidently say there are lots and lots of folks out there who would be over the moon to have the average blood glucose and time inrange you do.

Don't think I'm telling you to get a grip. I'm not, but it sounds like a few things are just piling in for you.

If your GP won't, or can't see you, is there the option to contact your clinic and talk to someone there?

I do hope you're feeling a bit more positive soon.

Thank you for your kind words. Regarding the GP, they have closed the online system called Ask My GP, saying it's "currently unavailable for online requests". So even though when you phone them, a recorded message tells you not to phone them, the online system is closed to new patient enquiries anyway. I guess I'll just phone them anyway.

The other thing is I could just ring the diabetic clinic at my hospital, which is a separate entity from my GP surgery.

 

[Grant_Vicat]

Over the last year I noticed floaters in my vision, which have never gone away since they started. Tests from opticians concluded it may not be diabetes and my eye screening simply resulted in a letter saying I had background retinopathy, which I already had. I mentioned floaters to the woman carrying out my eye-screening but she didn't want to get drawn in to a discussion and told me to wait for my letter.

In the last few days, something else has happened. I've noticed this strange burning sensation on my left foot. I was hoping it was some kind of muscle problem (that could be cured) but some Googling has suggested it's probably diabetic nerve damage and, ultimately, the start of what leads to amputations.

My GP surgery is not taking any new enquiries, so that avenue is closed. It may as well not exist, it's so useless. What do I do in this situation? Just ring the Diabetic Clinic.

I used to imagine I'd have an interesting, rich life and have a family. If my body is shutting down at 33, I'm not sure that would even be responsible.

I was moved onto a pump at the end of June but, sadly, I just can't hack it properly. My control has been worse since then and my average glucose over the last 90 days is 7.7 and my time in range is 78%.

I echo what others have already said. At the age of nearly 21 I was in a very bad way with Type 1. I never dreamt I would be writing this 44 years later with all my limbs and both eyes working very well. Yes I had laser treatment (the last time was in 1983) and yes I eventually had a kidney/pancreas transplant 10 years ago. Considering I had signs of kidney disease at least 50 years ago, I hope this puts things in perspective. Treatment is infinitely more effective now and with your readings, you stand far more chance than I did. I fully empathise with the numbing and devastating effect eye problems and other unwanted signs can have on your mind, but I would suggest that your worse fears are unlikely to happen. I wish you the very best of luck.

 

[Grant_Vicat]

The other thing is I could just ring the diabetic clinic at my hospital, which is a separate entity from my GP surgery.

I would definitely do this. Not only are you seeing specialists, but I reckon they would put you in touch with a diabetes/ophthalmologist. I always found that Type1 is a talisman when contacting a hospital.

 

[RobertJ]

The NICE guidelines are for 70% or above in range. My understanding is that above that the benefits are diminishing when considering the additional cost (mental health) to achieve it.
I don't know what you experienced pre-pump but you results at the moment are good and are unlikely to be contributing to any complications you are expecting now.

Thank you, @In Response. I am aware we're told 70% or more is good, but I don't think that's really enough. You could be regularly hitting readings of 15 and above and still be 70% in range. For the six to nine months before June 2023 (when I moved to a pump) I was on 80-95% in range. Saying that, I would still rather get better with the pump than go back to pens.

Sadly, before the last year or so my control was not good enough. Here are the HBA1C results I can obtain and as you can see some of them are terrible.

I've had the condition since January 2003 and, although I tried hard, I didn't have good control for most of the time before 2022. The sad thing is, I did take it quite seriously but I just had bad control anyway.

 

[EllieM]

The other thing is I could just ring the diabetic clinic at my hospital, which is a separate entity from my GP surgery.

To be honest, if you are worried about T1 complications, I'd expect your diabetic clinic to be a lot more clued up than the surgery.

Though I wouldn't assume you have complications. I've had on again off again retinopathy for decades, apparently most recently off, if you believe the doctor who did my cataract surgery, and have had a persistent floater since before the surgery that no one seems bothered by (including me). As for odd aches and pains in my extremities, podiatrists and physiotherapists are my first port of call. I'll start being more concerned if I start to lose sensation in fingers or toes.

And I can assure you my control in my preglucometer teens was way way worse than what you call awful.

Personal health remains somewhat of a lottery (we've both drawn the T1 card) but T1 doesn't mean you have to get complications such as amputations, even if you have some diabetes related wear and tear that a non diabetic does not.

 

[Jaylee]

When was the last time you had the foot tickle & the baby heartbeat foot stethoscope check thing, @RobertJ ?

 

[AndBreathe]

Thank you for your kind words. Regarding the GP, they have closed the online system called Ask My GP, saying it's "currently unavailable for online requests". So even though when you phone them, a recorded message tells you not to phone them, the online system is closed to new patient enquiries anyway. I guess I'll just phone them anyway.

The other thing is I could just ring the diabetic clinic at my hospital, which is a separate entity from my GP surgery.

Oh. My GP’s phone system is, frankly, chaotic. “We”’re still “talking” about Covid, as in lockdowns and crisis. It takes 8 minutes to get beyond dialling 999, looking online or asking anyone but them.

Frankly? We just have to press whichever button allows us to speak to a human.

Which ever route you decide upon, speak to a human, and explain how you are feeling.

 

[AndBreathe]

Thank you, @In Response. I am aware we're told 70% or more is good, but I don't think that's really enough. You could be regularly hitting readings of 15 and above and still be 70% in range. For the six to nine months before June 2023 (when I moved to a pump) I was on 80-95% in range. Saying that, I would still rather get better with the pump than go back to pens.

Sadly, before the last year or so my control was not good enough. Here are the HBA1C results I can obtain and as you can see some of them are terrible.

View attachment 63367

I've had the condition since January 2003 and, although I tried hard, I didn't have good control for most of the time before 2022. The sad thing is, I did take it quite seriously but I just had bad control anyway.

Don't be hard on yourself, @RobertJ , any change to routine, never mind a whole new way of managing your T1, is almost nailed on to be disruptive, and if your control was better before, I 100% get why 70% wouldn’t be cutting it.

Cut yourself the slack you would encourage others to apply to themselves.

 

[AndBreathe]

Thank you for your kind words. Regarding the GP, they have closed the online system called Ask My GP, saying it's "currently unavailable for online requests". So even though when you phone them, a recorded message tells you not to phone them, the online system is closed to new patient enquiries anyway. I guess I'll just phone them anyway.

The other thing is I could just ring the diabetic clinic at my hospital, which is a separate entity from my GP surgery.

I appreciate you might feel a bit beaten down by things at the moment, but to be honest, I would persist until I spoke to a person. You are their registered patient, and they are paid to provide you with services.

My interpretation of new patient enquiries could be for brand new patients looking to register for GP services, rather than not answering anyone unwell, needing help? The latter is plain old not doing their jobs.

I think bottom line is, for a handful of reasons you could just do with some support, and maybe even some reassurance at the moment. You deserve better than a soulless voicemail message.

 

[RobertJ]

When was the last time you had the foot tickle & the baby heartbeat foot stethoscope check thing, @RobertJ ?

I can't remember the month but definitely this year. It was normal back then.

 

[RobertJ]

Don't be hard on yourself, @RobertJ , any change to routine, never mind a whole new way of managing your T1, is almost nailed on to be disruptive, and if your control was better before, I 100% get why 70% wouldn’t be cutting it.

Cut yourself the slack you would encourage others to apply to themselves.

It's not just the straightforward dissatisfaction with my time in range, it's the experience of being high I hate. Since moving to the pump I have struggled so much more with long highs: highs that last four hours and require three, four or five corrective doses to finally get back in range. It's happened this morning, in fact. I was on 10.7 and thought I could "get away" with half a jam croissant at a work event. Well, that sent it back up to 14.4 even though I dosed ten minutes in advance and now I'm waiting for it to go back in range so I can actually have lunch. It hasn't been in range since about 7am now.

 

[RobertJ]

I echo what others have already said. At the age of nearly 21 I was in a very bad way with Type 1. I never dreamt I would be writing this 44 years later with all my limbs and both eyes working very well. Yes I had laser treatment (the last time was in 1983) and yes I eventually had a kidney/pancreas transplant 10 years ago. Considering I had signs of kidney disease at least 50 years ago, I hope this puts things in perspective. Treatment is infinitely more effective now and with your readings, you stand far more chance than I did. I fully empathise with the numbing and devastating effect eye problems and other unwanted signs can have on your mind, but I would suggest that your worse fears are unlikely to happen. I wish you the very best of luck.

Thank you, @Grant_Vicat, that is inspirational. You say you were in a bad way at the age of nearly 21. How long had you had it by then?

 

[holdem]

It's not just the straightforward dissatisfaction with my time in range, it's the experience of being high I hate. Since moving to the pump I have struggled so much more with long highs: highs that last four hours and require three, four or five corrective doses to finally get back in range. It's happened this morning, in fact. I was on 10.7 and thought I could "get away" with half a jam croissant at a work event. Well, that sent it back up to 14.4 even though I dosed ten minutes in advance and now I'm waiting for it to go back in range so I can actually have lunch. It hasn't been in range since about 7am now.

Is this a conversation to be had with your team when you speak to them. I am sure they would let you go back on the regular insulin and leave the pod to experience?

Your control is much better than mine so it seems bad to give advice but do you circulate your pod sites. As in try to move them to different places each time. I have a habit of finding a couple of comfortable places that i like but i appreciate this is not good as leads to slower insulin absorption i believe.

 

[AndBreathe]

It's not just the straightforward dissatisfaction with my time in range, it's the experience of being high I hate. Since moving to the pump I have struggled so much more with long highs: highs that last four hours and require three, four or five corrective doses to finally get back in range. It's happened this morning, in fact. I was on 10.7 and thought I could "get away" with half a jam croissant at a work event. Well, that sent it back up to 14.4 even though I dosed ten minutes in advance and now I'm waiting for it to go back in range so I can actually have lunch. It hasn't been in range since about 7am now.

Of course, as a T2, and even worse, a T2 in remission, I have no place to make any suggestions in terms of handling this, except to say your whole regime changed at the end of June. Based on your pic, above, your A1c at that point was your best ever.

I was diagnosed almost 10 years ago, and have been visiting the forum since then. Initially folks with pumps were few and far betwee, but clearly that has changed as technology has advanced.

In all that time, I don't think I've ever seen someone state that going MDI to pump was easy or effortless, and in some ways, the commonality of the Libre/CGM has probably made that harder.

When finger pricking regularly, we all know we never see the whole picture - the sustained highs or multiple peaks from Chinese food, or whatever. In those circumstances, innocense could have been considered bliss. You now have ALL that data to beat yourself up with.

Hopefully, an experienced T1 will pop along and maybe have some wisdom for you. In the meantime, perhaps a chat with your DSN, or pump clinic. Hopefully, they would have some ideas to help you, with your TIT at least.

 

[RobertJ]

Oh. My GP’s phone system is, frankly, chaotic. “We”’re still “talking” about Covid, as in lockdowns and crisis. It takes 8 minutes to get beyond dialling 999, looking online or asking anyone but them.

Frankly? We just have to press whichever button allows us to speak to a human.

Which ever route you decide upon, speak to a human, and explain how you are feeling.

The NHS has never fully got out of Covid lockdown mode. They continue to discourage patients from attending hospitals and my GP surgery continues to have the attitude of "We're unable to operate as normal right now" but what they mean is they're permanently unable to do that.