Lab Results back...(Re: Numbness, Tingling, etc.)

[Ender]

I had a doc apt on Monday afternoon. The PA ordered a lot of tests, and although they haven't called me yet, I found my results online. She did not run the full thyroid panel because she said I'd be gaining weight rather than losing, but she did repeat the TSH and T4 (2.8 and .92). The T4 wasn't as low given their reference range. More importantly, I had a negative ANA (so no lupus, yay) and the inflammation tests were in the normal ranges (sed rate and rheumatoid factor). Also, I'm not anemic again, and now that I've gone off the stupid bipolar med, my sodium and chloride levels are GREAT! I'm right in the middle of the range, so I can finally stop pouring salt all over everything I eat. Even my vitamin D level improved from 23 to 44 (even though I haven't taken any vitamin D tablets in two months. 

All of that is great, except for my vitamin B12 level. My test result in July was 362. The test I had on 10/12, after three or four B-12 injections once a week, measured at 820. On Monday, it was back down to 344. That's lower than it was before. It dropped almost 500 points in eight weeks. WTH?  Is it normal for someone with B12 issues to have that big of a drop in so short a time?

I'm not even sure if it matters. Although my symptoms sound very much like B12 deficiency (and clearly something is going on there that I need to take action on), I'm unsure that B12 deficiency is the root cause. The numbness/tingling in my hands/feet/etc actually got worse while I was getting B12 shots a few months back. The only thing that helped (a ton) was cutting out gluten. Within three days, I saw a huge improvement. 

In any case, I think at this point, I'm going to see a neurologist. Last night at 2am I woke up with my leg feeling odd. I think it fell asleep on me (below the knee), but it didn't go fully numb like my limbs used to. It did the whole pins and needles/pain/numbness thing your limbs do when they actually fall asleep naturally. Except instead of lasting 10-20 seconds, the numbness and such lasted nearly ten minutes. I couldn't really walk on it because it was numb and weak. Then it hurt like a very mild spasm/charlie horse and still bothered me an hour later. That's never happened before.  

[southpaw13]

My B12 is on the higher end (800-900). I've found that I cannot take a multi-vit or anything that augments my B vitamins, if I do I get tingles in my toes and fingers that worsen the longer I supplement (not that I need a B vit supplement, but I would like to take a multi for other things). I'm not sure how this relates to gluten for me; I am sensitive to gluten, and am in the process of ruling out celiac, so I am eating gluten still. I am hoping being gluten-free will stop this silliness for me.

[Ender]

Well that sucked. My PA's assistant called to tell me my lab results yesterday. Everything's great according to my PA, including my B12. I'm to supplement with 1000mcg of B12 and come back in a few months.

 Huh? When I pointed out that I'd dropped nearly 500 points in two months, the woman told me it didn't matter. I'm fine. I'm above 250 which is the cutoff for B12 deficiency. Okay, but my old doc had me do B12 injections to get my numbers up since I was having numbness and tingling and such in my extremities, and that's a common symptom of it. Nope, I'm above 250 so I'm not deficient. Repeating it twice makes it true! Even though the numbness, tingling is still around (and maybe getting worse again frankly)...even though I just had a couple of weeks of massive joint pain and aches and weakness that is still lingering. Nope, everything's great. According to my PA, I "probably" just had some viral infection with caused my joint pain. I "probably" will be fine if I just continue eating gluten-free. See you in a few months. Go see a neurologist if you want! Click.

So basically, I have no idea what is wrong with you. I'm pulling things out of my ass. Go be someone else's problem for a while.

I think I've reached that point where I've begun to HATE doctors and medical professionals. I've helped myself more by reading the internet than any doctor has helped me so far, and that's just sad considering how much money I've spent in co-pays and how much of my sick/vacation time I've run through on doctor's appointments, etc. I don't have the energy, time, or patience to keep doing this. I've been "going to the doctor" since JULY looking for answers. That's not even counting the doctor runaround I went through eight years ago. I just want to feel good again, damn it. The only reason why I do feel much better than before is because I've stalked this place like mad, asked questions, researched the answers on pubmed, and followed advice when people have been kind enough to throw some my way.  

After I got off the phone with Ms. Probably, I scheduled an appointment with a neurologist (for the nerve issues and joint pain) and a gastro (just to get genetic testing for celiac genes). Neither can see me until mid-January though, so I'm back to twiddling my thumbs. At this point, I have zero expectations that they're going to tell me anything valuable, but a girl can hope, right?

On 12/11/2015 at 11:20 PM, southpaw13 said:

My B12 is on the higher end (800-900). I've found that I cannot take a multi-vit or anything that augments my B vitamins, if I do I get tingles in my toes and fingers that worsen the longer I supplement...

Hrmm...maybe you were having a reaction to some other ingredient in the vitamin? I really have no idea about other B vitamins, but I have read that there is no toxicity level with B12 when supplementing. It might also be the case that some other vitamin/mineral increases when you supplement and that interferes with another's absorption.

[GFinDC]

Hi Ender,

I am not saying you have it, but gluten ataxia can cause symptoms similar to yours.  You could ask your nuerologist to check you for it.  One of the indicators is something called UBO's (unidentified bright objects) on the brain.  I'm not making this up!    Anyway, gluten ataxia attacks the nervous system, so it can cause numbness and difficulty walking.  The treatment is the gluten free diet.

 

[squirmingitch]

I agree with GeeEffinDC. The neurologist might be your best & only hope. Actually there have been more than a few people alerted to celiac by their neurologist. 

[cristiana]

I'm just wondering - aren't there other B vitamins deficiencies that can cause tingling?  Or too much can also cause tingling - see this about B6?

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I know a couple of people who have to have B12 injections several times a year as they have pernicious anemia.  

 

[Ender]

Well, after two months of having joint pain/aches and muscle soreness, all so bad that I thought I might have to take a leave of absence from work because I simply could not sit at my desk for eight hours, I think I may have figured out the cause of my problems:

My roommates are trying to kill me. 

One (or more) of the three #@%$#@% has been using my scrubber brush to clean their dishes. Apparently, I am that #@%#@ sensitive.

I've suspected that one of them was using it because of its condition, but I wasn't sure and I thought I might be paranoid. Who uses other people's things? I continued to use it and just rinsed my dishes really well, thinking that I would be fine. But the other day it was obvious someone had been using it. They've almost ruined the thing and there was food stuck in it that I don't even eat. I got pissed off at the grossness and rudeness, even more pissed off than I would have normally because someone had put a sleeve of garlic bread on top of my !@#$##! ice tray overnight!!! They'd opened foil bag, ate half the bread, and put it right on top of my tray...even though we had room in the freezer to put it somewhere else.

Who does that??? For #@#!$#@ sake, are you serious??? On top of an ice tray??? Not only is that gross and rude at any time, but--

*smacks head against wall*

I tossed out my scrubber and bought a new one, keeping it in my room this time (and obviously dumped my ice and cleaned my tray). I only kept my new scrubber in my room because I was pissed, but miraculously, three days later, my joint and muscles issues improved overnight. They aren't gone, but they have faded significantly. And I've gone from sleeping 4-5 hours to 7 hours. 

I suppose I've gotten really sensitive since cutting out gluten.  It doesn't help that my roommates never clean up their crumbs and spills from the table, counters, and stove top. I have to do that before I cook my own things, then clean it all up again because IT'S RUDE TO LEAVE A MESS FOR OTHERS TO WALK IN ON! I hope that's not making me ill too.  

*smacks head against wall again*

I'd move into my own apartment if I could afford it, but since I can't and I'm not 100% sure this is the reason I've improved, I decided to buy my own mini-fridge (with a freezer), my own microwave, and replace some of my kitchen stuff I've kept from my pre-gluten-free days. Hopefully, this will end my troubles and finally, after three months of gluten-free eating, I'll feel at 100%.

Addendum: I went to see a GI doctor and a neurologist during all this. Such a waste of time. I'm so sick of doctors.

[cyclinglady]

It sounds like you solved your problem!  I can not believe that people could be so inconsiderate!  ? Glad that you are feeling better!  ?

[frieze]

vitamin B12 should be at least 400, and better, over 500 in the person that is potentially symptomatic.  B12 sublinguals, on an empty stomach, because most of it is actually swallowed.