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At loss with rapidly worsening symptoms of peripheral neuropathy

Discussion in 'Diabetes Complications' started by Mike Sixx, Nov 2, 2019.

  1. Mike Sixx

    Mike Sixx · Well-Known Member

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    I was diagnosed this July with T2 (HbA1C 93, BG 15.3) so really bad values. And looking back I now can recognize Symptoms of T2 as far back as one year before diagnosis. Feeling un-characteristically tired, almost falling to sleep at work. Specially after lunch. And guess how I treated this ? With sugar ofc ! To get more energy. And I now also recognize initial symptoms of peripheral neuropathy 9 months before diagnosis. I had slight numbness in twisted little toe. I bought silicone straightening tube for it. I started having numbness at ball of my right foot about 3-6 months before diagnosis. Which I chalked as too tight new shoes. It was coming and going. I also started eating less to lose weight to help with health problems few months before diagnosis.
    Then diagnosis, I started strict diet and weight loss. I went 1st month without Insulin and got I morning BG to 8 ish. Realising I could not get it lower than that without insulin I started that. I had on and off numbness in my feet that I still passed as pinched nerve from new too tight shoes. Those were really way too narrow I I threw them away. I have broad feet and I damaged my feet before so I paid not much attention to that.

    So about two months after diagnosis I the numbness in my feet started getting worse during sinus infection and flu/influenza that lasted for couple weeks. I sought helps from one Diabetes doctor who dismissed me outright as "it can not be peripheral nephropathy this soon" he did not even bother to properly examine my legs, just tested temperature and pulse with his hand (I considering of making official complaint). Then seeking help from diabetes nurse. By the time I got time for her the head cold and fever went away and by and by felt almost normal with minimal numbness in right foot. Nurse recognized liver spot like marks on top of my feet near toes. And told my feet are bloated. I got those marks maybe 6 months back they were on and off. She told it must be a reaction to insulin. I tried telling her at that point I had been using insulin for a month and I had no reaction to it. She did the actual touch sensitivity test on my soles and found one area in both with complete loss of touch and I feel that at ball of my foot and toes I had noticeably less sense of a feel. And I was told most likely boated feet as reaction to insulin. I was told to get support socks and better shoes. I put that on my list and went on. Then four days later the inf-flu-sinus-infection ***-storm came back with vengeance. Feet were getting worse every couple days. the completely numb area in my right foot was getting bigger and toes losing feelings. Even the so far much better left food started to get much worse that it even had been. I went to see new diabetes doctor I carefully chose and was told again "peripheral neuropathy should not come this soon" I tried to explain to him I might have had undiagnosed T2 for up to 1.5 years before diagnosis and my sugar intake had been insane for that whole time. He did two sensitivity tests on my feet and found areas in lost touch of sense. At the time only starting to realize the symptoms might have started before diagnosis. This new doctor was much better that all 3 doctors before. He really explained things to me in technical details a little too much info at once. He suspected (if I remember correctly) that the sugar in blood might have damaged the nerves in feet and also the netting in kidney that the protein was leaking into urine and that would cause damage to feet nerves and bloating. He suspected I might have caused the nerve damage by dropping my blood sugar too fast. He told be rapid changes in blood sugar are far more dangerous than even long high values. He ordered battery of test including the ones previous doctors had neglected to take, like cholesterol. And Creating test for kidney damage. He advised to wait 2 days after I recover from the flu before going to lab. I waited 1-1½ day as I really wanted to get result before this weekend so I would not had to stress and wait over weekend. I asked my doctor to also take b12 tests as I got a really good suggesting from this forum that being one possible cause. I have not yet looked up who said that but thank you. I will find him and thank him/her properly if that turns out to be the solution.
    Friday morning I went to the test and on my way home from work bought bottle of b12 vitamin pills. I took one and in just couple hours my legs felt so much better. I was overjoyed with joy. Still slightly reserved it being placebo effect combined of getting my feet up, not to mention constantly wiggling my toes for hours to feel if they felt better. At same time I got my U-Alb and Creatin ratio results of 0.6 mml, test reference said normal value was <2.5 and neuropathy caused my kidney damage is >25mmol.
    So again I felt relief, only to be replaced fear that this was false negative and I had not been eating much in days before the test and still not completely covered from the flu.

    But 2/3 indicators, even if somewhat questionable are indicating all this this trouble was cause by B12 deficiency. I did not get my blood B12 test before weekend.

    I might be jumping the gun here. Actually, I now starting to believe I am. This is all too good and too perfect.
    I am vegetarian I do eat a lot of dairy products and eggs. I love beans. I though I was getting enough B12, but it would make sense that reducing food intake to lose weight might have dropped B12 too low.

    Now it is Saturday morning I felt really tired and weak. Could be combination of mental strain over this issue and really or no food intake. Morning BG was prefect: 5.2. Feet did not feel as good as they felt previous evening. Real mental roller coaster, Really difficult to gauge how much feet did not feel yesterday by memory.
    I ma getting some more sensations in my feet, like tingling, hot/cold. I constantly switching between hoping it is form feet getting better and healing and fearing it is from them getting worse. My blood sugar has been perfect I ate pretty substantial meal, larger that in weeks and 4h after my blood sugar was 6.5.

    So I am cautiously optimistic, fearing a lot I am so falsely. My biggest dream is that I got this in control just in time and that T2 and sugar levels had ONLY started to damage my feet and that now doing everything right I might at least stop it and hopefully the damage done might even repair. I do realize that might not be realistic and I already had started losing hope this being able to even be stopped.

    Most frightening thing is that I been doing everything what my Doctor and Nurse have told me for 3 months. I lost over 20 kg of weight in last 4-5 months. Since diagnosis, in July, only bad thing that I have eaten are cinnamon bun and one bag of caramelized almonds. Everyone tells T2 is no problem as long as you do everything right, I been doing everything right the moment I got diagnosis, but I fear I might have been it too late. And to add an insult to injury I even might have caused this complication by doing things too well.

    Long story but I though it was worth telling as it might give someone else some information and also I love any info anyone of you might have related to this. I would like to note I have no problem with my sugar values. They had been constant 5.0-5.5. latest doctor told that it being too low target and let it raise 6-7 range. After meal values have been 6.5-9.1(once), mostly lower 8's. I specially would love info on U-Alb-Creatin ratio test and how eating in previous days might affect it.
     
  2. HSSS

    HSSS Type 2 · Well-Known Member

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    @Jim Lahey experienceD neuropathy during the bgl lowering phase of his journey. I believe he attributes it to the healing of the damaged nerves as opposed to further damage occurring. Perhaps he can tell you more
     
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  3. Mike Sixx

    Mike Sixx · Well-Known Member

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    That gives me a little hope.
    Thank you that gives me hope. I just wonder if this what happens commonly why does none of the diabetes care professionals know about this and know to warn or tell about this ?
    Nothing the Doctors and nurses seem to make sense for me. I really get a feeling diabetes patients are supposed doctor themselves. So far it I have received much better information and help from this forum than from health care professionals.
     
  4. Jim Lahey

    Jim Lahey I reversed my Type 2 · Well-Known Member

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    Kind of, but not quite. I developed neuropathy pain as I got my diabetes under control, but I didn't experience a worsening of numbness.

    @Mike Sixx are you still using insulin to achieve those blood glucose levels? Have you ever had tests to determine your own endogenous (internal) insulin production? This is paramount because if you already have high levels being secreted by the pancreas - fairly typical in type 2 except in late stages - then adding more will often exacerbate progression of the condition. It will make the blood appear cleaner but is also likely to push ever more glucose into nerves, tissues and organs, potentially worsening the likelihood and/or severity of complications, now or in the future. In addition, excessive circulating insulin is damaging in and of itself, independent of circulating glucose.

    I don't wish to cause undue alarm, but in my opinion it is crucial to understand the insulin profiling of the patient before prescribing more. Adding more insulin to hyperinsulinemia (high insulin in the blood) only fuels the flames of type 2 diabetes. Unfortunately most GPs do not understand this. If you have not already had your insulin levels tested then I recommend approaching your doctor about it. Some (most?) may not willingly reciprocate. Certainly in the UK it is not widely understood as an essential test. Many of us here on these forums, myself included, have paid for private lab testing.

    The good news is that once your own insulin production is understood, you will be in a better position to form a plan of action. We are here to help with potential dietary recommendations where we can, but obviously we cannot offer medical advice. If indeed you are still using insulin, please do not make changes to your dosing regimen without first consulting your doctor.

    Good luck!
     
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    #4 Jim Lahey, Nov 3, 2019 at 4:34 AM
    Last edited: Nov 3, 2019
  5. Mike Sixx

    Mike Sixx · Well-Known Member

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    Yes, I am still on insulin and I actually increased my insulin a lot during the flu , from 16 to 24, as my sugar levels rose during that time . So what you are saying makes sense. I have not been tested for my own insulin. I am now per doctors order decreasing my insulin medication to let blood sugar raise to 6. This morning BG was 5.2 @16 unit insulin. As it has been like 3 days. I think I maybe start dropping it one unit every two days. As any faster might be dangerous.

    I will of course consult my doctor before doing anything and ask for those tests.
     
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    #5 Mike Sixx, Nov 3, 2019 at 9:48 AM
    Last edited: Nov 3, 2019
  6. Alexandra100

    Alexandra100 Prefer not to say · Well-Known Member

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    I hope you will be encouraged by these quotations from the much-respectedDr Bernstein:

    "What You Can Expect from Virtually Normal Blood Sugars

    from Dr. Bernstein’s book “Diabetes Solution”
    © 2007 by Richard K. Bernstein, M.D.
    I am convinced from my personal experience, from the experiences of my patients, and from reading the scientific literature, that people with normal blood sugars do not develop the long-term complications of diabetes. I am further convinced that diabetics with even slightly elevated blood glucose profiles may eventually experience some of the long-term consequences of diabetes, but they will develop more slowly and likely be less severe than for people with higher blood sugars. In this chapter, I will try to describe some of the changes that I and other physicians have observed when the blood sugars of our patients dramatically improve.

    DIABETIC NEUROPATHIES
    Diabetic neuropathies seem to improve in two phases—a rapid partial improvement that may occur within weeks, followed by sustained very slow improvement that goes on for years if blood sugars continue to remain normal. This is most apparent with numbness or pain in the toes. Some people will even comment,“ I know right away if my blood sugar is high, because my toes feel numb again.” On the other hand, several patients with total numbness of their feet have complained of severe pain after several months of near-normal blood sugars. This continues for a number of months and eventually resolves as sensation returns. It is as if nerves generate pain signals while they heal or “sprout.” The experience may be very frightening and distressing if you haven’t been warned that it might occur."

    You can read more from Dr Bernstein's book here: http://www.diabetes-book.com/normal-blood-sugars/

    I should point out that the bgs Dr B considers normal are pretty low. He would certainly not be happy with the advice to raise your bg into the 6 - 7 range. However, that is between you and your GP. If Dr B's approach appeals to you, you can find lots of short videos by him on Youtube.
     
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  7. bigjumbo

    bigjumbo · Newbie

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    Greetings I have been takings Alpha Lipoiec Acid 400mg in the mornings with great success . Also low dose of Amitripyline
    for the nerve pain . Originally felt like needles being shoved under my finger nails and toe nails. Took amitripyline from Dr ffirst the added Alpha Lipoic Acid. I also take Zinc, Chromium, B Group, and a supplement called Carnosine 1000mg daily . It is worth looking at evidence on the net for both Alpha Lipoic Acid for Neuropathy and Carnosine for diabetes in general . Cam give you more info if needed
     
  8. aealexandrou

    aealexandrou Type 2 · Well-Known Member

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    I suffer from diabetic neuropathy and was on gabapentin to alleviate the symptoms. Since I went keto & IF and came off the medications, I continue to suffer from it, but the symptoms are substantially less than they were when I was on medication.
     
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