Complications 15 years after diagnosis?

[curly]

Hi all

not the most cheerful of threads perhaps, but I was wondering for those of you who have complications how long it took for these to emerge?

I’ve had type 1 for 15 years and this year have developed first stage retinopathy and now I think I’ve got neuropathy as well, as am experiencing burning in my big toes at night.

I’m a bit upset, scared and downright hacked off, if I’m honest. Never had an A1C over 6.5% since diagnosis and usually more like 6.0–6.3%, which has taken a lot of work and I thought was quite good? I got the Libre in December and I’m always in target between 82 and 92% of the time. Again, I thought this was decent control? Seems like everything is kicking in quite early given this and I’m dreading long term prognosis now as I’m only in my early 40s.

Or is this completely normal and to be expected 15 years in, regardless of control? Or am I just deluded and my control is in fact not as good as most people’s?!

Thanks very much

 

[EllieM]

Or is this completely normal and to be expected 15 years in, regardless of control? Or am I just deluded and my control is in fact not as good as most people’s?!

Well it's certainly way better than mine (52 years in).

I've had on again off again background retinopathy for years/decades, so I wouldn't be too concerned about that. The perceived wisdom appears to be that serious eye issues are mostly avoided if you keep below 6.5 /48 , so while a bit of background retinopathy is disappointing, I'd hope that it remains as something to monitor rather than treat.

As for the possible neuropathy, I just don't know. Again I've had the odd intermittent symptom that could be that for over a decade, but the hospital have never noticed anything wrong... And I wouldn't necessarily assume that the burning sensation is neuropathy. Maybe see a doctor and get it checked out.

Honestly, in your position I'd probably just keep doing what you're doing now. Your control sounds excellent to me.

See what your clinic suggest?

Lots of virtual hugs.

 

[david4503]

I agree with EllieM that your control is excellent based on your numbers. None of us with Type 1 could hope for anything better. As for whether the retinopathy or possible neuropathy is normal, you might want to look up the latest statistics. I doubt it’s completely abnormal. It certainly wasn’t in past decades.

The basic rule of thumb, as I understand it, is that if you are in good control your chances of avoiding complications are also good but not guaranteed. OTOH, if you have poor control you are almost guaranteed to get complications and probably sooner rather than later.

So you’ve done your part and you will no doubt continue to benefit from your efforts. Still, I get that this isn’t much consolation when you’ve got a burning feeling in your toes, even if it’s intermittent. If it’s not just a temporary symptom of something, the doctors should be able to figure it out.

 

[Ushthetaff]

I have been diabetic for over 40 years and for about 30 of them my control was , well in a word pants in fact it wasn’t that, good! Nowhere as good as yours I had laser treatment on my left eye aBout 25 years ago and I th8nk every year since I’ve been told about “ some changes to the back of my ey,es but nothing to worry about , like previously stated your numbered are excellent so I wouldn’t be worried about it ! I know from personal experience it takes many years of bad control for serious complications to set in ,just keep doing what you’re doing and I’m sure everything will be fine

 

[Zhnyaka]

my diabetes is 18 years old. About 5 years after the diagnosis, my feet began to freeze very much, even in the heat, I thought it was polyneuropathy, but recently I went to a neurologist and he said that I did not have polyneuropathy. This year, after covid, my vision dropped by about 1 diopter, I decided that it was rhinopathy, but my ophthalmologist said that there was no rhinopathy. Otherwise, I'm fine

 

[curly]

Thanks so much for your helpful posts and encouragement. I went and got annual blood tests etc. yesterday at GP that I’d been putting off for a few weeks, so let’s see whether they throw up anything…wondering about B12, for example, with the feet.

Really appreciate you taking the time to respond and share your experiences and hope everyone stays well!

 

[curly]

After getting bloods done everything has come back normal, including B12 and thyroid which I thought might be reasons for burning feet. And A1C 5.4% the best I’ve ever managed! So that’s all reassuring. Am due at diabetes clinic in October so will see what consultant has to say…

 

[Mike Solomons]

Fuss, complain, don't take "no" for an answer. I currently am with a superb diabetes specialist and still having trouble, but was earlier once actually discharged by one idiot "consultant" who saw it easier to discharge me than offer essential medical help. Unfortunately, we have in many senses to be our own doctors. Regarding feet, at my next podiatrist appointment, I'm expecting a major first class "bust up" as I'm going to insist on help - up to now, over the past 37 years, the assorted podiatrists have reported on the problems found but have done nothing. This time, I have in mind a "sit in". How to "kick up a fuss" constructively is an art learned slowly, but you have to do it. At this point, I chased up a podiatrist appointment and was met with the usual obstruction. I am due to be seen in October. Last year I was put off as I started late September. Today I've been told I'm too early. I was promisesd contact after reachingt a "manager", but it hasn't happened. Hmmmm We have to remind them that we have real medical problems - we're not just statistics.

 

[vazi]

Hi all

not the most cheerful of threads perhaps, but I was wondering for those of you who have complications how long it took for these to emerge?

I’ve had type 1 for 15 years and this year have developed first stage retinopathy and now I think I’ve got neuropathy as well, as am experiencing burning in my big toes at night.

I’m a bit upset, scared and downright hacked off, if I’m honest. Never had an A1C over 6.5% since diagnosis and usually more like 6.0–6.3%, which has taken a lot of work and I thought was quite good? I got the Libre in December and I’m always in target between 82 and 92% of the time. Again, I thought this was decent control? Seems like everything is kicking in quite early given this and I’m dreading long term prognosis now as I’m only in my early 40s.

Or is this completely normal and to be expected 15 years in, regardless of control? Or am I just deluded and my control is in fact not as good as most people’s?!

Thanks very much

Don't assume you have diabetic neuropathy issues.
I had horrible stabbing pains and numbness in my fingers on both hands and both feet/ toes and burning in lower legs at night. All classic symptoms of diabetic nerve damage. It was scary.
My partner was at a.physio at the time and described my symptoms to the physio. Went to see the physio and after 1 session of trigger point massage symptoms reduced. Few session later pretty much gone. It was trigger points (muscle knots) in my neck shoulders and other places. Trigger points cause all types of pain all over the body when they become active. And Diabetes can make trigger points reoccur more often. Trigger points can refer pain or numbness to places far away from the source. If you can afford it go see a trigger point (myofascia msaage) masseuse.
If you can't afford a massage therapist buy the Trigger Point Therapy Workbook by Clair Davies. Best to get the kindle version and view on a kindle app on tablet / laptop. You can use this to learn to treat yourself. Probably the best tenner I've spent as I weight train and that causes trigger points too. TBH just get it because if it's caused by trigger points it will save a lot of money and time travelling to see physio etc. That book gets a lot of use in my house. Read the reviews and people say it has changed their lives.
I rarely post on here but knew your issue could possibly be a relatively simple fix and not diabetes related. But as Diabetics (I'm 45 YO and T1D since 12 YO) we can assume the worst. Hope this helps.

 

[Hopeful34]

I found your post really interesting @vazi thank you.

 

[curly]

Don't assume you have diabetic neuropathy issues.
I had horrible stabbing pains and numbness in my fingers on both hands and both feet/ toes and burning in lower legs at night. All classic symptoms of diabetic nerve damage. It was scary.
My partner was at a.physio at the time and described my symptoms to the physio. Went to see the physio and after 1 session of trigger point massage symptoms reduced. Few session later pretty much gone. It was trigger points (muscle knots) in my neck shoulders and other places. Trigger points cause all types of pain all over the body when they become active. And Diabetes can make trigger points reoccur more often. Trigger points can refer pain or numbness to places far away from the source. If you can afford it go see a trigger point (myofascia msaage) masseuse.
If you can't afford a massage therapist buy the Trigger Point Therapy Workbook by Clair Davies. Best to get the kindle version and view on a kindle app on tablet / laptop. You can use this to learn to treat yourself. Probably the best tenner I've spent as I weight train and that causes trigger points too. TBH just get it because if it's caused by trigger points it will save a lot of money and time travelling to see physio etc. That book gets a lot of use in my house. Read the reviews and people say it has changed their lives.
I rarely post on here but knew your issue could possibly be a relatively simple fix and not diabetes related. But as Diabetics (I'm 45 YO and T1D since 12 YO) we can assume the worst. Hope this helps.

Thanks