Treatment Induced Neuropathy of Diabetes. Anybody else feel like they suffered from this after quickly lowering blood sugar levels? Did it get better? How long did it take?
TIND
- Thread starter Caprock94
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JohnEGreen
Master
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- 13,234
- Type of diabetes
- Other
- Treatment type
- Diet only
- Dislikes
- Tripe and Onions
As I had neuropathy from the outset I can't say that mine was caused by reducing blood sugar levels too quickly the onset of my peripheral neuropathy was one thing that led to my eventual diagnosis of diabetes.
So I am afraid I can't make much of a contribution here.
So I am afraid I can't make much of a contribution here.
Shas3
Well-Known Member
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- 653
- Type of diabetes
- Type 2
- Treatment type
- Tablets (oral)
As I discussed in the other thread I believe i suffered from TIND. From initial symptoms to satisfactory recovery it lasted a little over 6 months. It was very scary and depressing and i am glad things improved significantly
Indy51
Expert
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- 5,540
- Type of diabetes
- Type 2
- Treatment type
- Diet only
You might find the following thread helpful: https://www.diabetes.co.uk/forum/threads/is-neuropathy-reversible.117656/
My experience was that the pain gradually diminished over quite a long period of time. Now I'd say it's completely resolved but can't really say when that happened (I'm 8 years from diagnosis in March 2012). You might want to try r alpha lipoic acid supplements as many people find them helpful.
My experience was that the pain gradually diminished over quite a long period of time. Now I'd say it's completely resolved but can't really say when that happened (I'm 8 years from diagnosis in March 2012). You might want to try r alpha lipoic acid supplements as many people find them helpful.
I currently feel that I am experiencing TIND having dropped my blood sugar level >4% in 2 months from November last year.
Currently experiencing worsening retinopathy (diabetic macula oedema) in both eyes although blood sugars are being kept between 4 and 6.
Also interested in whether anyone suffering from TIND has had the retinopathy issues and if they cleared up on their own or with treatment. Although I've had a referral to an eye clinic I'm yet to hear back.
r alpha lipoic acid was mentioned earlier in the thread and I was interested in which brands people bought and from where.
Thanks.
Currently experiencing worsening retinopathy (diabetic macula oedema) in both eyes although blood sugars are being kept between 4 and 6.
Also interested in whether anyone suffering from TIND has had the retinopathy issues and if they cleared up on their own or with treatment. Although I've had a referral to an eye clinic I'm yet to hear back.
r alpha lipoic acid was mentioned earlier in the thread and I was interested in which brands people bought and from where.
Thanks.
I had blurry vision (mainly up close) for a couple of weeks as blood sugars dropped. It went away when things got stable.
Thanks. That's pretty standard when glucose levels initially change in the fluid in the eye and I had that back in November. TIND studies specifically mention worsening retinopathy which started for me in January this year in my right eye and has now affected my left eye. The study suggests the degree of retinopathy is also related to the rate at which blood sugar levels were lowered.
I can't add the link for the study but search for "PMC4285188"
Do you know what your glucose levels were initially and what they went down to and when you started to change your levels?
My neuropathy worsened dramatically about 5 weeks after I started the changes to mine (early December).
I've had a number of other symptoms, small electric shock type sensations, muscle twitching, loss of temperature sensing / skin sensitivity, loss of taste / smell although this seems to have returned to some extent. The symptoms were worsening every couple of days and I had been getting more concerned since no-one seemed to have an answer until I read the study.
Also had a recent diagnosis of small fibre neuropathy.
Currently taking 1x metformin and keeping glucose levels between 4 and 6 with very restrictive diet.
I can't add the link for the study but search for "PMC4285188"
Do you know what your glucose levels were initially and what they went down to and when you started to change your levels?
My neuropathy worsened dramatically about 5 weeks after I started the changes to mine (early December).
I've had a number of other symptoms, small electric shock type sensations, muscle twitching, loss of temperature sensing / skin sensitivity, loss of taste / smell although this seems to have returned to some extent. The symptoms were worsening every couple of days and I had been getting more concerned since no-one seemed to have an answer until I read the study.
Also had a recent diagnosis of small fibre neuropathy.
Currently taking 1x metformin and keeping glucose levels between 4 and 6 with very restrictive diet.
lucas12
Well-Known Member
- Messages
- 62
- Type of diabetes
- Type 2
- Treatment type
- Diet only
Yep, it lasted 4 month after lowering sugars never had it before alpha lipid acid helped
Did yours include the symptoms I've listed?
What did you bring the glucose levels down to and what were they before and over what kind of time period?
Did you also have any of the automonic symptoms or worsening retinopathy or other microvascular issues associated with it?
Eyesight has worsened and I'm still waiting to hear back from the eye clinic.
The diabetic specialist to whom I was referred due to the microvascular issues seem to dismiss the idea of TIND saying it is usually found in type I diabetics and has referred me back to my surgery diabetic nurse.
The pain has been worsening and affects my whole body now including my shoulders and upper arms and that my body has lost more sense of touch. I also feel that my sense of taste has diminished again.
The study ( Google PMC4285188 ) suggests "The pain in TIND is more severe, and poorly responsive to interventions including opioids" and I am now considering taking gabapentin to see if it offers any relieve whatsoever.
I have considered whether I can take retirement on medical grounds due to the pain but without any medical reports / diagnosis / prognosis I can't see this happening. Has anyone had any experience of doing this?
HELP! Is anyone aware of a TIND specialist in this country?
The diabetic specialist to whom I was referred due to the microvascular issues seem to dismiss the idea of TIND saying it is usually found in type I diabetics and has referred me back to my surgery diabetic nurse.
The pain has been worsening and affects my whole body now including my shoulders and upper arms and that my body has lost more sense of touch. I also feel that my sense of taste has diminished again.
The study ( Google PMC4285188 ) suggests "The pain in TIND is more severe, and poorly responsive to interventions including opioids" and I am now considering taking gabapentin to see if it offers any relieve whatsoever.
I have considered whether I can take retirement on medical grounds due to the pain but without any medical reports / diagnosis / prognosis I can't see this happening. Has anyone had any experience of doing this?
HELP! Is anyone aware of a TIND specialist in this country?
It's been a while. Checking back on this thread. How are you doing today? Mine has slowly gotten better. Not 100% by any means, but much better than when it began.
Yes, better but not 100%. It's been 3 1/2 years now, but it has slowly gotten better each year. I still have flare ups, especially after doing a lot of walking, but it is manageable. I don't know if I will get to 100% normal again, but its much better. Thanks for asking!
I too am battling TIND per my neurologist. I was diagnosed with T2D with an A1c of 12.5 on August 4th, 2022 and brought it down to 8.1 on October 24th, 6.8 on November 23rd and 6.2 on December 21st. Probably was T2 for 2 years or so.
Around 8/23/22, give or take a day or two, I started to intensely incorporate a strict LCHF diet & exercise and lost 35 pounds.
Around 10/21/22, give or take a day or two, the bilateral burning feet and soles at night started and was at its peak between Thanksgiving and Christmas. I would start to sweat after dinner, feet would feel like they were freezing and 10 minutes later they were red and felt like on fire. To the point where only cool/cold showers were all I could take as warm water felt like hot coals. It has subsided a lot but I occasionally still get cold and hot toes. It went from feet and soles to just toes (2-3 toes bilaterally) now. I also had zaps and jolts in feet but those have stopped. I do still get cramping pain in toes at night.
My A1c today is around 5.8 so hoping this TIND goes away soon. I am taking R-ALA and Benfotiamine. From all the literature I’ve read on TIND, it should clear over time provided you keep A1c in check. I was also told by neurologist it will clear over time. Could be months, could be 1-2 years.
Good to hear you are doing so well with your A1C. Yeah, give it time and hopefully it will continue to improve. I had the zaps in my feet, but that only lasted a couple of weeks. Today my feet felt great all day, but they hurt some after playing basketball. Not too bad overall though.
