Reversed Diabetes quickly but still have bad neuropathy? Help please!

[LimesOz]

Hi all,

I'm 41 and was diagnosed with Diabetes T2 in March (A1C of 7.3). After losing 15% of body weight in 3 months I've now successfully reversed (A1C of 5.3). I'm still sadly getting quite bad neuropathy - some days worse than others but toes, fingers common and today it felt like left part of my face.

Has anyone else experienced this, or any tips on how to make it better? I'd love to hear I'm not alone (or better yet how to cure!)

I live alone and the thought of amputation (and blindness) totally terrifies me.

Thanks

 

[Pumper_Sue]

Who says you have neuropathy?
If it's a self diagnoses then I suggest you book a GP apt., and discuss your symptoms with him/her as it does not sound like neuropathy to me.

 

[LimesOz]

I'm still pretty new to all of this @Pumper_Sue so maybe I got the name wrong! I get numbness and/or pins and needles ... but mostly numbness.

I've only seen my endo twice and we haven't had a chance to prioritise talking about it - mostly focused on diet and testing next steps.

 

[Pumper_Sue]

I'm still pretty new to all of this @Pumper_Sue so maybe I got the name wrong! I get numbness and/or pins and needles ... but mostly numbness.

I've only seen my endo twice and we haven't had a chance to prioritise talking about it - mostly focused on diet and testing next steps.

Neuropathy (diabetic) is the correct name for a condition.
But and this is a very big but, your symptoms do not sound like neuropathy it's more than likely something else like a B12 deficiency it's best not to jump to conclusions as you end up scaring yourself silly with imagined conditions. Hence why I suggested you talk to your GP 🙂

 

[LimesOz]

Thanks Sue 🙂 .. we're back in lockdown here, so as soon as I can I'll see my GP again. I've just come off the 800cal a day/keto combo to reverse, so you're right it could be something else! Much appreciated 🙂

 

[Pumper_Sue]

Thanks Sue 🙂 .. we're back in lockdown here, so as soon as I can I'll see my GP again. I've just come off the 800cal a day/keto combo to reverse, so you're right it could be something else! Much appreciated 🙂

you are more than welcome 🙂

 

[Ljc]

Do you have a way of contacting your team or your family doctor say by email or online etc if so that’s what I suggest you do , their are many different causes for your symptoms, and the sooner the blood tests etc are arranged the better.
I do understand this is difficult during lockdown.

 

[Docb]

Hi @LimesOz and welcome to the forum. I can relate to what you are reporting, having neuropathy in my face and I get tingling in my arms and hands. This has been going on, and getting steadily more pronounced, for the last 12 years or so and first showed itself around the time I was diagnosed with T2. I go round the houses with a neurologist once a year, after which he agrees that I have some sort of obscure (his word) neurological deterioration and suggests I come back in another year. He does not think it is diabetes related but has no idea what is causing it.

Anyway, I second the suggestion of others, that you talk to your GP and get a referral to a neurologist. Dunno what neurological services are like in Oz but if they are like they are round here, prepare yourself for the long haul. I've come to the conclusion that neurology lurks mostly in the dark ages of medical science. Chances are that you will get a lot of long words which, when you decipher them, will tell you that you have a face ache and tingling fingers and be told to come back in a year. Secretly, I reckon they are hoping it will get a lot worse because that will give them a better chance of figuring out the cause.

Most important is that there is of course the remote possibility that something sinister is going on which they can spot and if that is the case then the sooner it is identified and corrected the better.

Hope that gets you somewhere, and that you have at least one kindred spirit out here.

 

[Leadinglights]

Hi @LimesOz and welcome to the forum. I can relate to what you are reporting, having neuropathy in my face and I get tingling in my arms and hands. This has been going on, and getting steadily more pronounced, for the last 12 years or so and first showed itself around the time I was diagnosed with T2. I go round the houses with a neurologist once a year, after which he agrees that I have some sort of obscure (his word) neurological deterioration and suggests I come back in another year. He does not think it is diabetes related but has no idea what is causing it.

Anyway, I second the suggestion of others, that you talk to your GP and get a referral to a neurologist. Dunno what neurological services are like in Oz but if they are like they are round here, prepare yourself for the long haul. I've come to the conclusion that neurology lurks mostly in the dark ages of medical science. Chances are that you will get a lot of long words which, when you decipher them, will tell you that you have a face ache and tingling fingers and be told to come back in a year. Secretly, I reckon they are hoping it will get a lot worse because that will give them a better chance of figuring out the cause.

Most important is that there is of course the remote possibility that something sinister is going on which they can spot and if that is the case then the sooner it is identified and corrected the better.

Hope that gets you somewhere, and that you have at least one kindred spirit out here.

Secretly, I reckon they are hoping it will get a lot worse because that will give them a better chance of figuring out the cause.
A bit like an intermittent fault in an electrical appliance, almost impossible to diagnose the issue so you just hope it becomes permanent. Unless you are lucky and get somebody who has seen that same thing before and new exactly what to do.

 

[rebrascora]

Hi and welcome.

Were you put on any medication as well as tackling your diabetes through lifestyle changes? Metformin can affect Vitamin B absorption I believe and if you have cut grains from your diet quite drastically via a low carb/keto type diet, again that would likely hit your Vitamin B intake so I would definitely be looking to have that tested as Vitamin B deficiency would be by far the simplest cause of your symptoms to rectify. You could even start a supplement to see if it improves things a bit if you can't get a blood test appointment at the moment but it is sometimes necessary to correct with Vitamin B injections I believe if levels have dropped too low. I certainly wouldn't be making any drastic conclusions about parting with my limbs at this early stage. 😱 😉

 

[pm133]

Hi all,

I'm 41 and was diagnosed with Diabetes T2 in March (A1C of 7.3). After losing 15% of body weight in 3 months I've now successfully reversed (A1C of 5.3). I'm still sadly getting quite bad neuropathy - some days worse than others but toes, fingers common and today it felt like left part of my face.

Has anyone else experienced this, or any tips on how to make it better? I'd love to hear I'm not alone (or better yet how to cure!)

I live alone and the thought of amputation (and blindness) totally terrifies me.

Thanks

Hi @LimesOz,

I'm type 1 and suffered the same as you although I only got it from the waist down.
It took a few months to find painkillers which worked and I'm now on Gabapentin (1800mg-2100mg per day). Amytriptylin was useless and Duloxetine wore off quickly after a few days so neither helped.

So for the most part, the pain has subsided. and I don't really notice it now other than a bit of numbness in my feet and that is mostly just a bit of minor annoyance rather than anything else.
I do still get pain when I'm tired but sleeping sorts that.
Also, I will get twinges from time to time - especially if I'm hot.

I no longer wear socks and wear open-toe sandals around the house. I also bought a heap of pyjama bottoms so I don't wear normal trousers unless I'm off to Asda. That has all helped hugely. Luckily I'm retired for the time being (unless I can get off the pills) so I can wear what I want. The major problem is that wearing all this stuff has sent my levels of inate sexiness into the stratosphere. So much so that my wife has asked me to tone it down so she can concentrate on her crochet. She has bought me a fake moustache and that has helped keep her passion at bay. 🙂

The biggest issue I have is that the pills make me foggy. I'm a former scientist and have an ongoing strong interest in maths and science still so that makes things difficult for me. I'm able to function but it can be a struggle to concentrate for long periods of time. I'm having to make it my hobby for now.

I'm beginning to come to the conclusion that after 10 months since diagnosis, I am probably stuck with this condition and the pills.

 

[AndBreathe]

@LimesOz - I don't have diabetic neuropathy, but have lived with post surgical neuropathy on my ribs. It has eased over time, but it took a couple of years before it really toned down significantly. Nowadays, it only really gets going if I wear underwired bras for more than a couple of hours (the cost of vanity!).

Many people try R-ALA for neuropathic pain. You can buy it in health shops, or on Amazon, but the R is very important.

I was very doubtful when folks started talking about R-ALA, but my reading tells me it is a recognised treatment in other countries (I'm in UK), including in Germany where it is prescribed by medics to treat neuropathy. Could be worth a bit of reading.