Neuropathy caused by improved control

[SiGreenwood]

Hi, I've been Type 1 for 23 years and always had good control but around March this year I decided that things could be better. I attended a DAFNE course and sorted out my Basal and Bolus regime and now I usually stay between 4 and 6 during the day and very rarely go above 7.4 post meals. I cycle or run 5 times a week and I'm fit and healthy and have never had any Diabetes related complications. My last HbA1C was 5.7 but I suspect that it is probably lower than this now and typically since diagnosis my HbA1C has always been around 6 to 6.5.

What I have found, which was very unexpected, is that since my control improved I have started to have what I think are Diabetes related Neuropathy symptoms.

Typically:
Burning feeling on the outside of my arms between my hand and elbow and burning feeling on my shin between my foot and 2/3rds of the way up to my knee. This was just in the evenings but now seems to be there from waking until going to bed at night. It feels like sun burn but there is no redness or rash. I have had this on and off since March and had thought it had gone away but over the last two weeks it has started to get much worse. This is the worst of the problems I am getting.

I've also had problems with my finger tips and would get a sore pinched finger feeling. Again this comes and goes and has got much better apart from one finger on my right hand where I get the feeling everyday. It feels like I've trapped my finger and that it is brused.

Also I've just started to get twinges in my toes and feet. These are very brief flashes of pain that come and go at any time and doesn't seem to be related to anything. I also get a bit of an ache feeling in a few of my toes and th ball of my foot on one side. I did wonder if this could be due to running or whether it could be Diabetes related.

I mentioned these problems to my Specialist and he responded via email to say that the problems I am having may well be caused by my improved control. He said that it was probably undetected nerve damage, caused by having T1 for 23 years, reparing itself and that over time the problems should subside.

I'd like to hear from anyone else this has happened to. I'm aware that people who have just been diagnosed get these problems when they improve their control, typical T2's when they are put on medication, but are there any long term T1's this has happened to, especially ones whos control was never that bad anyway? Also if anyone has had these problems due to improved control how long did it take for the problems to go away, I heard that for eyes it can be 12 months before they start to get better. Finally why would the problems seem to be getting worse now, 4 1/2 months after my control started to improve, I thought things would be getting gradually better but now that they seem to be getting worse, especaially the burning, I'm getting worried.
TIA.

 

[Marzeater]

I never had any problems before I was diagnosed as T2 in June last year. Now since the medication I have some nerve damage to my feet that they say will improve when I get my diabetes under control.

 

[the_anticarb]

Hi there, I don't have neuropathy but I have retinopathy, same sort of thing different part of the body? I recently improved my control immensely improving my hba1c from in the 12s to 6.6 within four months. And the retinopathy has got worse and also started to develop in the macular. I'm sooooooooo pi**ed off that all my efforts to resolve the problem have made it worse although I know it will get better eventually. Spoke to someone who said that the body has to learn to cope with the improved bg's and this can make it go a bit haywire at first. This seems to be what's happened to me maybe this is whats happened to you? Frustrating isn't it.
But it should trough out at some point and then start to improve - for both of us - at least I hope so because otherwise I don't know what else I can do.

Where did you hear that it takes 12 months for the eyes to start to get better? I can't bear the thought of things getting worse for another six months or so, but have to accept that yesterday's lack of control is causing todays damage

Gina

 

[the_anticarb]

PS forgot to say I have had diabetes 17 years, most of them poorly controlled, have neither type 1 or type 2 (mody) but I guess I am closer to a type 2 than type 1.

 

[SiGreenwood]

I read it in 'Pumping Insulin' by Walsh and Roberts.
It says that if you have existing retinopathy eye damage can temorarily worsen if you rapidly improve your control. It also says that after 6 to 12 months of good control retinopathy can stabilize and slowly improve.

Anyone else know any more about this happening in T1's, the burning sensations that is?

 

[Louise5967]

Hi there, I've had T1 for 38 years with fluctuating/bad control during my teens -for the last 10 years I've had a hba1c of 6-6.5% but recent one was 5.6% after I discovered this website and reduced my carbs to approx 80g per day-hasten to add have lost 11kg since March 09 as a result and want to try and go further as I was overweight and became insulin resistant during pregnancy-now have a beautiful baby and feel great.
However when I initially sharpened up my control I got pain in the sides of both feet and fluctuating pins and needles in my fingers-was very low about this and my consultant confirmed it was probably neuropathy. This was bad for approx 2 months but has now gone-I am relieved to say-I hope yours disappears asap too!!
Thankyou to all the advice I've picked up from various threads on here-especially from the T1's

 

[hanadr]

Hi there Si
I can think of 2 possibilities to explain your symptoms.
1) Are you taking simvastatin? It can do that
2) although your previous level of control was pretty good, you had begun to develop neuropathy. Now with the improvement to almost non-diabetic, your nerves are healing an telling you about it.
Number 2 is well known in people who get better control.
It's VERY unlikely that you would begin to develop neuropathy on near non-diabetic levels of control, although not impossible. Non-diabetics with abouve 5% HbA1cs are prone to develop it too.
However, I think 2) is most likely.
Next time you see your health care team, get them to test your nerve responses.

 

[SiGreenwood]

Hi there Si
I can think of 2 possibilities to explain your symptoms.
1) Are you taking simvastatin? It can do that.

Yes I've been taking it for 3 years. My Cholesterol tests are spot on, LDL, HDL, Triglycerides etc.. and I am fit and healthy. I had toyed with the idea of talking to my specialist about coming off the Statins but I've only just started seeing these problems and assumed that if the Simvastatin was the problem I would have seen problems earlier.

2) although your previous level of control was pretty good, you had begun to develop neuropathy. Now with the improvement to almost non-diabetic, your nerves are healing an telling you about it.

I certainly hope this is the case. I'm surprised that it is taking so long, my control improved in March and the pins and needles and the pinched fingers seems to have all but passed but the burning is still there and seems to be getting worse, could it be that it's different nerves that are still repairing and giving me the burning feeling?

Next time you see your health care team, get them to test your nerve responses.

I've got an appointment with a Neuorologist on the 31st of August about a suspected trapped nerve, which might actually turn out to be my nerves healing, so I'll discuss everything with him and ask him to give me the full set of tests and ask about the burning feeling.

Hi there, I've had T1 for 38 years with fluctuating/bad control during my teens -for the last 10 years I've had a hba1c of 6-6.5% but recent one was 5.6%

Sounds very similar to me, I always had a good hba1c but I think it was masking the problem that I also swung from high to low quite a bit. I've now got my hba1c down and I've stopped the highs and lows which I believe can help.

This was bad for approx 2 months but has now gone-I am relieved to say-I hope yours disappears asap too!!

I've not had any really bad problems, I'd just rate things as uncomfortable and irritating. My problems seem to have been going on for about 4 1/2 months and I was hoping that they would be coming to an end soon. Lets hope so, maybe my unknown nerve damage was more advanced than yours and it's taking longer to heal everything.

 

[red]

>>>>>>>>>>>" 2) although your previous level of control was pretty good, you had begun to develop neuropathy. Now with the improvement to almost non-diabetic, your nerves are healing an telling you about it.
Number 2 is well known in people who get better control.
It's VERY unlikely that you would begin to develop neuropathy on near non-diabetic levels of control, although not impossible. Non-diabetics with abouve 5% HbA1cs are prone to develop it too.
However, I think 2) is most likely.
Next time you see your health care team, get them to test your nerve responses.">>>>>>>>>>>

I think I have what Hana refers to in no 2 above. for the last 3 months I have had 40 or 50 carbs a day and reduced my bg to about 7-8 average each day, which although is still high, god only knows what it was before as I was on about 70 million carbs a day, I test it once and it was in the 20's.
I dont see anyone at any clinics or appointments, am I supposed to be. all I do is have a blood test every six months, and get nothing else help from gp or practice nurse other than told to eat carbs! should I be asking for any appointments to check for the complications or anything. this stuff is all new to me and worrying. Since I have 'controlled' my bg my feet for the last 3 months have been feeling funny like tingly or burny especially if I stand on cold surface in my feet. Before I had this diagnosis, I was really healthy, I had no worries, perfect feet and no anxeity. What is this upside down diabetes land?