Any advice/help appreciated ? Treatment induced neuropathy

[Proud to be erratic]

I can identify with that feeling of "walking on glass with numbness". I agree it sounds a stupid description, but the sharpness of discomfort is very real to me.

I have no medication solution. But I now very, very rarely walk anywhere with bare feet; I put some slippers on even to take 7 or 8 steps from my bed to the bathroom. If I come out of the shower I'll dry my feet first and then put my slippers on straightaway, even the mats and towels on the bathroom floor are just so uncomfortable. The pins and needles sensation is very variable; sometimes lousy at other times barely noticeable. Another weird sensation is having "numb" feet including toes, yet very ticklish when someone gets near. I have a clear and strong reflex action, but sometimes don't realise my feet are being touched (if they are screened or I'm deliberately not looking).

The findings from my "foot tickling" appointment in mid '24 were ambiguous; I need to press for more follow-up at my next appointment. Meanwhile I'm trying to document better evidence to help me convincingly explain the problem to my GP.

 

[ridder]

I dont walk far either, the numbness in my legs and feet along with this pain especially underfoot has really restricted me from doing much at all. I've been this way for 4 months now, was hoping for some improvement but I am known to be impatient!

 

[ridder]

Well - if your HbA1c had been around the 80 mark for a while prior to your sorting it out and reducing it to something more sensible (ie the 53) it is quite possible that the fast reduction could have caused the neuropathy pain - but on the contrary the pain etc can be caused by the previously damaged (by too high BG) nerve endings actually healing rather than the opposite! Kind of like restoring the electricity that goes along the wires and now it's getting to all the really fine wires at the ends of all the main ones which unbeknown to you haven't been able to have electricity along them for a while, cos their deterioration was much more gradual over time, hence you never noticed it.

All this sounds about right and thankyou for this post and well explained, makes a lot of sense, now I am just hoping for some relief from this. Hopefully can only get better whatever is going on. Would like to know when as its been 4 months now.

 

[everydayupsanddowns]

All this sounds about right and thankyou for this post and well explained, makes a lot of sense, now I am just hoping for some relief from this. Hopefully can only get better whatever is going on. Would like to know when as its been 4 months now.

How long did it take for your pain to improve when your nerves were repairing themselves @PattiEvans ?

 

[PattiEvans]

About 3 months I think. Hard to remember as it was over 20 years ago. I took the Neuropathy “cocktail” though. The treatment is used in Europe but Drs here do not seem to have heard of it. I’ll post it when I get on my laptop.

 

[AndBreathe]

Hi.
I had my B12 checked on 11/12, it was 160ng so not quite deficient, Dr prescribed cyanocobalamin 100mcg a day orally.
All new to this as never had any of these problems before I got my hba1c to a good place.

What was the "normal range" given on your blood test results?

Unfortunately, being in range for any given test is not always optimal, or near-optimal for some tests.

My OH had a broad blood panel done a couple of years ago, privately, and the report that came back with the results was comprehensive, and not just a number, compared to the "normal/acceptable" ranges. On that his B12 was in range, but closer to the bottom than the top. The reviewing doctor's suggestion was to undertake a further test to assess for a genetic anomaly (although he did say that'd likely have been evident much before his mid-70s), or to try supplementing for 6 months and repeat the test. He did the latter.

We researched and found a "decent" (I use the parenthesis because decent means different things to different folks) supplement and got going on that. His numbers have risen and he feels better in himself.

All of that said, the Doc's comments were that he appears in remarkable health for his age. He repeat test was generally much better. It was almost as if raisng his B12 a bit had oiled the cogs to other things performing more positively.

Just a thought, really on where you might be on the ranges and whether an improvement, within range could help you.

Good luck with it all.

 

[harbottle]

Thinking back to 2021 when I was diagnosed (hba1c 83) when I went low carb and got back to normal, my legs did feel very strange. Just uncomfortable and a bit itchy. Not painful, at all. It gradually went away over the years and I doing get it anymore.

 

[PattiEvans]

Here's the Neuropathy cocktail information.

 

[ridder]

What was the "normal range" given on your blood test results?

Unfortunately, being in range for any given test is not always optimal, or near-optimal for some tests.

My OH had a broad blood panel done a couple of years ago, privately, and the report that came back with the results was comprehensive, and not just a number, compared to the "normal/acceptable" ranges. On that his B12 was in range, but closer to the bottom than the top. The reviewing doctor's suggestion was to undertake a further test to assess for a genetic anomaly (although he did say that'd likely have been evident much before his mid-70s), or to try supplementing for 6 months and repeat the test. He did the latter.

We researched and found a "decent" (I use the parenthesis because decent means different things to different folks) supplement and got going on that. His numbers have risen and he feels better in himself.

All of that said, the Doc's comments were that he appears in remarkable health for his age. He repeat test was generally much better. It was almost as if raisng his B12 a bit had oiled the cogs to other things performing more positively.

Just a thought, really on where you might be on the ranges and whether an improvement, within range could help you.

Good luck with it all.

Just checked my B12 results and don't really understand them but this is what it said.....

Serum B12 level 160 ng/L [197.0 - 771.0]
Vitamin B12 results <200ng/L

Hope someone can make sense of this!

 

[Leadinglights]

Just checked my B12 results and don't really understand them but this is what it said.....

Serum B12 level 160 ng/L [197.0 - 771.0]
Vitamin B12 results <200ng/L

Hope someone can make sense of this!

I interpret this as saying normal level is between 197and 771ng/l and yours at 160ng/l is below the normal range as it is less than 200ng/l
This should alert your GP that you probably need B12 injections.

 

[ridder]

I interpret this as saying normal level is between 197and 771ng/l and yours at 160ng/l is below the normal range as it is less than 200ng/l
This should alert your GP that you probably need B12 injections.

Thank you. I am seeing my GP on Wednesday so I'll speak to her then about it. I'm really fed up with this now. Appreciate your advice

 

[ridder]

Thank you. I am seeing my GP on Wednesday so I'll speak to her then about it. I'm really fed up with this now. Appreciate your advice

Sorry, me again! I am also taking atorvastatin as well as other diabetic medications and insulin. I was told that atorvastatin could affect my nerves as well as B12. Not sure if that is true tho?

 

[Leadinglights]

Sorry, me again! I am also taking atorvastatin as well as other diabetic medications and insulin. I was told that atorvastatin could affect my nerves as well as B12. Not sure if that is true tho?

Some people don't tolerate statins well, I do take a low dose10mg atorvastatin and have no problem but I know others do and have to try a number of different statins before they find one which does not have side effects of limb or joint pain or even mental problems.

 

[ridder]

Some people don't tolerate statins well, I do take a low dose10mg atorvastatin and have no problem but I know others do and have to try a number of different statins before they find one which does not have side effects of limb or joint pain or even mental problems.

Thanks. I'm on 20mg atorvastatin. Got a lot of things to discuss with GP on Wednesday I think! Getting an appointment with a doctor is not easy so I've got a long list!

 

[Proud to be erratic]

Thanks. I'm on 20mg atorvastatin. Got a lot of things to discuss with GP on Wednesday I think! Getting an appointment with a doctor is not easy so I've got a long list!

Good luck with that long list. I had a short list of 3 topics; I arrived to find a large notice on each door of the medical practice telling me only one ailment at one appointment. No possibility of a holistic perspective!

 

[AndBreathe]

Good luck with that long list. I had a short list of 3 topics; I arrived to find a large notice on each door of the medical practice telling me only one ailment at one appointment. No possibility of a holistic perspective!

Conversely, I had an appointment a few months ago and commented I'd best sort out another appointment "about my finger". Her response was ,......... "That doesn't make sense. You're here now, so tell me all about it".

Every place is different - aside from a near universal challenge of actually achieving an appointment any time soon!

 

[ridder]

Good luck with that long list. I had a short list of 3 topics; I arrived to find a large notice on each door of the medical practice telling me only one ailment at one appointment. No possibility of a holistic perspective!

Yeh, my GP Surgery has those signs too but as i see it, I'm going into discuss my neuropathy, that's one ailment with a few issues!!

 

[PattiEvans]

Yeh, my GP Surgery has those signs too but as i see it, I'm going into discuss my neuropathy, that's one ailment with a few issues!!

FWIW hubby has just taken himself off Atorvastatin due to his legs going "numb". He cannot stand for long and needs to sit down to return feeling.

 

[ridder]

Yeh, I've heard a lot of negative things about this statin, sure there has to be an alternative (another thing on my list! lol that is if I still need it as my cholesterol has improved, don't think it was too bad to begin with.

 

[helli]

Yeh, I've heard a lot of negative things about this statin, sure there has to be an alternative (another thing on my list! lol that is if I still need it as my cholesterol has improved, don't think it was too bad to begin with.

As with all medication we are prescribed (or buy over the counter) there are possible side effects listed in the leaflet within the box. The important things to remember are
- read the leaflet if you want to be educated about the medication, We cannot expect our GP to be able to list all possible side effects of every drugs they prescribe. They may be able to explain the most common side effects but not everything that may (or may not) affect you.
- these are possible side effects and many people do not experience them
- if you do find you are experiencing a listed side effect, there are often alternatives. There definitely are with statins.

Statins are prescribed to millions of people. Because they are a common drug, you are more likely to hear or read about people who they do not suit. It is like Samsung phones - they are the most common mobile manufacturer in the UK. I read about more problems with Samsung phones than any other. This does not mean Samsung phones are less reliable than a less common manufacturer like Oppo.