Type 2 TIND

[Shas3]

Treatment induced neuropathy in diabetes - TIND.

Anyone has any experiences to share on this? I have seen a few threads and a few academic papers on the subject. After getting my head around it, I believe I may have suffered this (still struggling a bit) and I think my doctors never realized. My HbA1c at diagnosis was 11.8% (around 105). Within 3 months it was 7.8%. Around this time i had weakness in my legs and some tingling which actually led to a fall causing a fracture in my 5th metatarsal. Once i was out of the cast, I realized i had a foot drop in both legs, which is extremely extremely rare. All tests confirmed it was NOT any autoimmune disease but the cause of neuropathy in my peroneal nerves was very unclear. Doctors said “as things are improving, just supplement with Vitamins- B12 mainly- and ALA and minerals”. In fact by May the foot drop has fully resolved (which too is rather unusual according to doctors) but i have pain in legs. In hindsight I think i may have suffered TIND, and the doctors couldn’t nail it. Am trying to cope with the muscle pain snd hoping it resolves soon.

Looking to anyone who has any experience and how things turned out and anything that helped manage the pain during recovery.

I must inform my doctor about this and suggest they don’t try aggressive approached at diagnosis..

Thanks

 

[HSSS]

@Jim Lahey may have some relevant comments

 

[Member496333]

@Jim Lahey may have some relevant comments

Thanks for the mention. My own personal experience was that I developed severe and debilitating pain in my feet as the numbness subsided. I used cannabis for pain relief, which obviously isn’t going to appeal to most.

Treatment was a whole foods ketogenic diet which reversed all symptoms fairly quickly.

 

[Shas3]

Thanks for the mention. My own personal experience was that I developed severe and debilitating pain in my feet as the numbness subsided. I used cannabis for pain relief, which obviously isn’t going to appeal to most.

Treatment was a whole foods ketogenic diet which reversed all symptoms fairly quickly.

Thanks Jim... cannabis is going to be difficult for sure as is going on a full Keto.... let me discuss with doctor (for whatever it is worth) and see how it goes. Am curious if your neuropathy was “treatment induced” which apparently is neuropathy that happens when glycemic control is achieved “rapidly after long time high levels”. So when someone has had high uncontrolled levels for few years before diagnosis and aggressively treats and brings levels rapidly down in 2-3 months coupled (often) with significant weight loss is likely to suffer this specific type of neuropathy. This sounds exactly like my case...

 

[Member496333]

Thanks Jim... cannabis is going to be difficult for sure as is going on a full Keto.... let me discuss with doctor (for whatever it is worth) and see how it goes. Am curious if your neuropathy was “treatment induced” which apparently is neuropathy that happens when glycemic control is achieved “rapidly after long time high levels”. So when someone has had high uncontrolled levels for few years before diagnosis and aggressively treats and brings levels rapidly down in 2-3 months coupled (often) with significant weight loss is likely to suffer this specific type of neuropathy. This sounds exactly like my case...

Yes. In my case the pain came about as the numbness subsided when my blood glucose began falling. Basically the nerves in my feet were in tatters. The best I could hope for was burning pins & needles, and the worst was shooting, stabbing pains like someone sticking a dagger into the soles of my feet. Randomly and often in public. It’s no embellishment to say that sometimes the pain was so severe I’d be crying in pain at night.

I’m most definitely not recommending cannabis to anyone else, but it was magic for me in masking the pain. Without it I’d have spiralled into depression. I haven’t smoked in more than twenty years, so I vaped the raw herb (no tobacco, no burning plant matter). Unfortunately it really was only pain relief rather than a fix, and obviously I couldn’t spend my whole life as high as a kite. As much as I’d have liked to!

The ketogenic anti-inflammatory diet fix could arguably be dismissed as a coincidence conflated with the passing of time healing the nerves, but it didn’t feel that way to me. The pain was getting progressively worse right up to the point where I began the new way of eating. After which it was gone within months.

 

[Shas3]

Yes. In my case the pain came about as the numbness subsided when my blood glucose began falling. Basically the nerves in my feet were in tatters. The best I could hope for was burning pins & needles, and the worst was shooting, stabbing pains like someone sticking a dagger into the soles of my feet. Randomly and often in public. It’s no embellishment to say that sometimes the pain was so severe I’d be crying in pain at night.

I’m most definitely not recommending cannabis to anyone else, but it was magic for me in masking the pain. Without it I’d have spiralled into depression. I haven’t smoked in more than twenty years, so I vaped the raw herb (no tobacco, no burning plant matter). Unfortunately it really was only pain relief rather than a fix, and obviously I couldn’t spend my whole life as high as a kite. As much as I’d have liked to!

The ketogenic anti-inflammatory diet fix could arguably be dismissed as a coincidence conflated with the passing of time healing the nerves, but it didn’t feel that way to me. The pain was getting progressively worse right up to the point where I began the new of eating. After which it was gone within months.

Thanks Jim.... glad you overcame such a challenging situation... and thanks for sharing so much.... I think we all learn so much more from shared experiences on this forum than from all the hours with medical professionals

 

[Member496333]

Thanks Jim.... glad you overcame such a challenging situation... and thanks for sharing so much.... I think we all learn so much more from shared experiences on this forum than from all the hours with medical professionals

You’re very welcome. I’m not shy in talking about my experiences with diabetes. Hopefully my ramblings help others in similar positions and save them some pain and heartache.

 

[kitedoc]

Very glad you are recovering.
For any thought of TIND, there needs to be exclusion of all other causes - and you were treated with things like vitamin B 12 and ALA without any reason given.
And what actual treatment of your diabetes did you undergo?

 

[Shas3]

Very glad you are recovering.
For any thought of TIND, there needs to be exclusion of all other causes - and you were treated with things like vitamin B 12 and ALA without any reason given.
And what actual treatment of your diabetes did you undergo?

Thanks... when I realized i had foot drop and some tingling sensation in feet (not much in way of pain) while recovering from a fracture, the suspicion was autoimmune issues and all antibody tests for autoimmune came negative. So these were ruled out and doctors concluded that neuropathy in peroneal nerves (confirmed through a nerve conduction test) was linked to diabetes (without specifying TIND). During the almost 3 weeks of tests there was visible improvement in foot drop, though minor. Though my B12 was within normal range it was closer to the lower end (300 pg / ml or something like that). Based on these doctors supplemented B12 and other stuff deemed as supportive of nerve recovery. And it definitely helped with foot drop. I am extremely relieved that i can dorsi-flex my feet.

Diabetes treatment in first few months was Metformin and Forxiga which led to rapid weight loss and rapid drop in HbA1C. But Forxiga created a lot of issues and in my opinion it is not the right way to address high sugar levels as instead of helping body absorb sugar it filters it off creating an artificial sense if sugar control. Anyway I stopped Forxiga and was put on Onglyza (Saxagliptin). I am currently on these two but really want to stop Onglyza asap

 

[Caprock94]

About 6 weeks after being diagnosed, and after rapidly dropping my levels back in to a good, steady range, I developed pain in my feet. Like a burning type pain that varies in intensity. Some tingling in hands. I’m about 10 days in to this. This happened after changing my diet to low carb and quickly lowering bg levels.

 

[Shas3]

About 6 weeks after being diagnosed, and after rapidly dropping my levels back in to a good, steady range, I developed pain in my feet. Like a burning type pain that varies in intensity. Some tingling in hands. I’m about 10 days in to this. This happened after changing my diet to low carb and quickly lowering bg levels.

Hi. If the pain is severe and if the HbA1c drop was over 2% points (as in the older system... i dropped 4 percentage points from 11.8 to 7.8) there is a possibility that it maybe a case of TIND. It appears that this is more likely if blood sugar levels were relatively high for a while by the time of diagnosis. In my case based on my medical check schedules and symptoms (increased hunger etc.) I suspect i was running quite high (probably in the range of 15-18 mmol at fasting) for 18 months at least before diagnosis. So i am quite convinced that my case was a TIND but am a bit disappointed that doctors didn’t anticipate while getting me onto aggressive steps to bring down blood sugar levels. Apparently the most recent thinking is if at diagnosis the levels are very high, a gradual reduction is preferred. On the brighter side if the neuropathy is indeed a case of TIND, it is more likely to be acute snd not chronic i.e. it could be limited ad reversed. Good luck and wishing you a quick and full recovery

 

[Caprock94]

Hi. If the pain is severe and if the HbA1c drop was over 2% points (as in the older system... i dropped 4 percentage points from 11.8 to 7.8) there is a possibility that it maybe a case of TIND. It appears that this is more likely if blood sugar levels were relatively high for a while by the time of diagnosis. In my case based on my medical check schedules and symptoms (increased hunger etc.) I suspect i was running quite high (probably in the range of 15-18 mmol at fasting) for 18 months at least before diagnosis. So i am quite convinced that my case was a TIND but am a bit disappointed that doctors didn’t anticipate while getting me onto aggressive steps to bring down blood sugar levels. Apparently the most recent thinking is if at diagnosis the levels are very high, a gradual reduction is preferred. On the brighter side if the neuropathy is indeed a case of TIND, it is more likely to be acute snd not chronic i.e. it could be limited ad reversed. Good luck and wishing you a quick and full recovery

Thank you. Best wishes to you as well.

 

[Caprock94]

Hi. If the pain is severe and if the HbA1c drop was over 2% points (as in the older system... i dropped 4 percentage points from 11.8 to 7.8) there is a possibility that it maybe a case of TIND. It appears that this is more likely if blood sugar levels were relatively high for a while by the time of diagnosis. In my case based on my medical check schedules and symptoms (increased hunger etc.) I suspect i was running quite high (probably in the range of 15-18 mmol at fasting) for 18 months at least before diagnosis. So i am quite convinced that my case was a TIND but am a bit disappointed that doctors didn’t anticipate while getting me onto aggressive steps to bring down blood sugar levels. Apparently the most recent thinking is if at diagnosis the levels are very high, a gradual reduction is preferred. On the brighter side if the neuropathy is indeed a case of TIND, it is more likely to be acute snd not chronic i.e. it could be limited ad reversed. Good luck and wishing you a quick and full recovery

How are you feeling these days? Hope things are better!

 

[Shas3]

How are you feeling these days? Hope things are better!

Hi. Thanks. Much better. I haven’t visited this forum for ages now. Sorry. Just got a notification and I came here. My diabetes has been in decent control. 6.0 to 6.5 HbA1C (the mg/l system). The foot drop issue is resolved and i walk normally. Of late, using FitBit i try to get between 15 to 20 thousand steps a day. The muscle pain in legs I realized was a side effect of Onglyza... stopped it and resolved in a few weeks. How are you??

 

[Caprock94]

Hi. Thanks. Much better. I haven’t visited this forum for ages now. Sorry. Just got a notification and I came here. My diabetes has been in decent control. 6.0 to 6.5 HbA1C (the mg/l system). The foot drop issue is resolved and i walk normally. Of late, using FitBit i try to get between 15 to 20 thousand steps a day. The muscle pain in legs I realized was a side effect of Onglyza... stopped it and resolved in a few weeks. How are you??

Good to hear! I'm still having pain in my feet and somewhat in my hands. No numbness, loss of sensations, etc. Just a burning/aching pain. It varies in intensity. Yesterday I hardly noticed it. Today it is bothering me.

 

[Shas3]

Good to hear! I'm still having pain in my feet and somewhat in my hands. No numbness, loss of sensations, etc. Just a burning/aching pain. It varies in intensity. Yesterday I hardly noticed it. Today it is bothering me.

What does your doctor say?

 

[Caprock94]

What does your doctor say?

Pulse rate is good. Passed microfilament with no problem. Next step would be to go to neurologist.

 

[Shas3]

I see. Wishing you good luck and recovery....

 

[Caprock94]

I see. Wishing you good luck and recovery....

Thanks!