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Old 03-15-2016, 09:37 PM #861
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First of all, thank you Mrs D and others who are there to support and help people seeking answers to their sickness. I started following this thread last week, while searching for diagnosis of my symtoms. I hope someone esp Mrs D would be able to help me here.
I am 38 years old female and have most of the symptoms related to Vit B12, but problem is before my blood test, I already started taking 5000 mcg, methylcobalamine and my test showed higher number ( B 12 - 1142), MMA came back normal. Is it possible with 3 days of supplementation, MMA levels come down? or should I rule out it B 12 deficiency at all?
My major symptoms- numbness and tingling (face, arm, hand, legs), fatigue, lightheadedness, heart palpitations with heavy pulse everywhere else, flu like symptoms, sensitivity to cold, feel feverish, headache, my feet are always cold, chronic constipation (thats a life time problem).
My blood test showed - I am pre diabetic, slight low MCH, MCV AND slight high- RDW, ESR- 31MM/HG.
I have always been prone to getting sick all my life, but these symptoms for last 2 months has made me almost disabled. I don't get all the symptoms everyday, some remain for couple of days, and then others take turn, keeping me sick constantly. plz help and suggest. Thanks in advance.
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Old 03-20-2016, 12:17 PM #862
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Mrs D,

I recently posted my B12 results. I have since been to my neuro and he wants me to take B12 event though it is high, he said my binding B12 was low and that it why I need to supplement. I had been off B12 for weeks when I tested.

Is it ok to take B12?

Thank so much, very confused for sure.

Kay

VIT B12 BINDING CAPACITY, UNSAT (TRANSCOBALAMIN)
601 L Range 650-1340 (pg/mL)

VITAMIN B12
1189 H Range 200-1100 (pg/mL)

METHYLMALONIC ACID, GC/MS/MS
110 Range 87-318 (nmol/L)
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Old 03-20-2016, 12:27 PM #863
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B12 is really easy to tolerate. The only concern it has for high dose is for people with a rare blood condition called polycythemia vera.

If your doctor told you to do this, I'd do it. Just do it with methylcobalamin form. If you suspect a genetic problem, like the MTHFR mutations, then I'd add methylfolate to your supplements.
You can get tested to see if you have this mutation...it is turning out to be fairly common.
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Old 03-20-2016, 01:02 PM #864
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Quote:
Originally Posted by mrsD View Post
B12 is really easy to tolerate. The only concern it has for high dose is for people with a rare blood condition called polycythemia vera.

If your doctor told you to do this, I'd do it. Just do it with methylcobalamin form. If you suspect a genetic problem, like the MTHFR mutations, then I'd add methylfolate to your supplements.
You can get tested to see if you have this mutation...it is turning out to be fairly common.
Thank you again for your advice. I have do have a double MTHFR mutation. I am currently taking Seeking Health's Active B12 Lozenge With L-5-MTHF.

Thank you again,

Kay
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Old 03-28-2016, 10:39 PM #865
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Hi there,
I'd like to thanks Mrs. D and everyone that posts their information here. It is all very helpful. I am a 57 year old male, that is in very good shape. I go to the gym twice a week, steer clear of Micky D's and never smoked. I do take a couple pills for epilepsy which has been fully controlled for 6 years. I was diagnosed with colon cancer in 11/14. I went through radiation and chemo and then had operation in 2/15. I carried a colonoscopy bag for 6 months and then had another operation to have my "plumbing" reconnected. I was very lucky. I was not sick one day or did not lose any hair. I lost 20 pounds though, which is a lot for me because I only weigh 155 to start with.
Ok, my question, I started to notice about 5-6 years ago a slight limp. I thought it was from an accident I had when I was younger and broke my femur and hip. It has slowly gotten worse over the past years. I said something to my Neurologist and he sent me to Washington University in St. Louis,MO and they did all of their tests but could not find a cause for the neuropathy.
I walk flat footed and my balance is shot now. My blood test showed b12 was 286 so I started taking 5000mcg one a day. I eat a bowl of cereal at 6:30am, go to work and then take my pill at 9:30 or 10:00. My feet never burned like some people say. Mine just tingled. I started taking the
b12 at Thanksgiving and now I don't have any tingling and can feel the bottom of my feet again. The one thing that is really strange is that my left calf is very cold. Well, both feet are cold too, but the calf is cold even after coming back from the gym.
It has taken several years for my feet to get in this bad of shape, so I know it will take a while for them to heal themselves.
Gene

Last edited by Geneo76; 03-29-2016 at 10:02 AM.
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Old 05-10-2016, 06:23 AM #866
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Default Idiopathic PN try B12?

I have read through this thread with great interest after having just been diagnosed with idiopathic neuropathy. My neurologist has ruled out many major things and essentially arrived at a diagnosis of IPN. I have had symptoms for a while now, at least a year, tingling and burning feet that came and went but now its a bit more constant on a day to day basis. I also am just noticing it in my hands a bit. I have no idea how I got this but will list a few bits of information including

Hashimotos diagnosed 2012 confirmed via ultrasound in 2015. No antibodies detected though. Been on thyroxine since then 2012. Currently stopping it for six weeks to see where im at on advice from neuro. I was getting some hyper symptoms.

Took norfloxacin antibiotics for diverticulitis about 18months ago. I also get ibs from time to time and have had chronic gatritis on and off.

Im not a diabetic and have generally good health.

The neuro dismissed vitamin b12 as a possible issue. But I'm not so ready to discount it.

Last test it was 449 pmol/L but I had been taking some tablets (not methyl) the week i got bloods taken. Serum folate was 34nmol/L. I'm mildly anaemic in terms of hematocrit and hemoglobin but those numbers bounce around between normal and low. I used to think this was from doing a lot of endurance sports (cycling) but I stopped that because of persistent pudendal nerve pain and still seem to have it a bit.

I have ordered some methyl b12 from the states because its hard to find here in Australia. Havent taken it yet though. Id like to be systematic about things I try when investigating things further but i'd like to hear what others might think of these numbers?

I also run low on serum sodium 135 and on lower side for potassium 3.7. Mag supplements have never really helped me at all.

Putting this all togther, pudendal nerve irritation, plus the peripheral neuropathy I was considering trying the methyl B12 for a few months? Might just be in the denial stage but I'm just not ready to rest on a diagnosis of "idiopathic" and a diet of Lyrica, which leaves me pain free but cognitively impaired...

Thanks
Fred
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Old 05-10-2016, 08:56 AM #867
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Welcome to NeuroTalk:
Your Floxin antibiotic is a member of the fluoroquinolone antibiotics, and they are known causers of neuropathy.

Here is a post about it:
http://neurotalk.psychcentral.com/post661103-2.html

As time passes, more and more people show up on the net searching for this topic. Today there are many more sites you can find on Google about the damage fluoroquinolones cause.

Low electrolytes like sodium and potassium do happen with kidney disease. So you need testing to see if they remain low or were just low that one testing time.

The B12 can't hurt, so I would stay on the methyl form for a while. Beginning low B12 does show up in CBC blood testing as a high or borderline high MCV result.
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Old 06-10-2016, 02:23 PM #868
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My recent B12 result was:

Vitamin B12 Binding Capacity 151 pg/mL Range: 650 - 1340 pg/mL

I don't know what this means. Never heard of "binding capacity." Been taking Jarrow B12 on an empty stomach. Big doses (1,000-10,000 mcg). My last B12 was nice and high, near 1000 if I recall. Puzzled. Am I all of a sudden not absorbing B12? My doctor is concerned because I am mildly anemic, as follows:

WBC 7.6 Thousand/uL 3.8 - 10.8 Thousand/uL
RBC 3.71 Million/uL 4.20 - 5.80 Million/uL
Hemoglobin 11.9 g/dL 13.2 - 17.1 g/dL
Hematocrit 35.2 % 38.5 - 50.0 %


Not doing too well today because I just had (unrelated) surgery on my arm. I'd be grateful if someone could explain. Thanks.
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Old 06-10-2016, 04:03 PM #869
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Quote:
Originally Posted by Nervous View Post
My recent B12 result was:

Vitamin B12 Binding Capacity 151 pg/mL Range: 650 - 1340 pg/mL

I don't know what this means. Never heard of "binding capacity." Been taking Jarrow B12 on an empty stomach. Big doses (1,000-10,000 mcg). My last B12 was nice and high, near 1000 if I recall. Puzzled. Am I all of a sudden not absorbing B12? My doctor is concerned because I am mildly anemic, as follows:

WBC 7.6 Thousand/uL 3.8 - 10.8 Thousand/uL
RBC 3.71 Million/uL 4.20 - 5.80 Million/uL
Hemoglobin 11.9 g/dL 13.2 - 17.1 g/dL
Hematocrit 35.2 % 38.5 - 50.0 %


Not doing too well today because I just had (unrelated) surgery on my arm. I'd be grateful if someone could explain. Thanks.
Do you have the MCV level? Is it high normal or out of range high?

You could get an MMA test and/or homocysteine to see if your
test was accurate. A low MMA and high homocytestine would indicate that your body is not using B12 properly.

Labs do make mistakes.

Since you are looking at a possible low level, and anemia, get a copper level run too. Low copper leads to anemia.
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Old 06-10-2016, 04:19 PM #870
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MCV 94.9 fL 80.0 - 100.0 fL
Folate >24.0 ng/mL

My doctor wanted me to come in for a B12 shot, then changed his mind and decided to get a redo on the test first. He keeps sending me to QuestDiagnostics for the blood draw and the tests. I don't like QuestDiagnostics, so I'm thinking of getting a new doctor.
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