It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Anemia Message Board


Anemia Board Index
Board Index > Anemia | 0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


I hope no one minds if I listen in. Not many doctors would be willing to hear about symptoms with a B12 in range but I have read that in Japan, they like the number to be over 500. My B12 was at 324 and my doctor said there is NO WAY a number that high would cause any symptoms and I am JUST depressed. They started me on Sertraline (Zoloft) and increased the dose twice when I said it was not helping and then switched to Effexor XR and increased the dose twice as again I said it was not working. It made me a different person alright but not the one my husband married!! I started being very paranoid and withdrawing and complained even more about sore hips (biggest symptom), fatigue, etc. My ionized calcium is HIGH 1.42 (1.17-1.32) but the doctor also says that is not high enough to worry about. Vitamin D is 19 (40-100) and Ferritin is 28. Total Cholesterol is 252. [U]Why do the labs even bother with ranges?[/U] Heck , I have been to 3 different doctors and they are all telling me I am just depressed. How blatantly obvious does a problem have to become before it is addressed? How much does a person fight before they just give up? Thanks so much for listening to me rant!! :mad: Hoppy
hi hopalong!do you live in the united states?if you do the normal range for B12 is 200-1100......if you do then 324 is quite low for B12....did your dr. do a "methylmalonic acid test"?if not then request it,because you coyuld have the same as me>a hidden B12 deficiency<...even so 324 is not a good level at all!

that's so how drs. are now...they just handout anti-depressants,because they don't have a clue about why people are sick....to me that is plain laziness on the drs.part and not fair to the patients.

keep posting...don't give up .........it took me over 2 years to find a dr. that actually acted like a dr. and looked for what was wrong with me.....I got so tired of being told that there was nothing wrong with me when my body was telling me otherwise!

Scout~


hi flowergirltoday! scroll down and read my post about symptoms of B12 deficiency....my dr. knew right away I was low on B12 from my symptoms(dr. was a hematologist,not my regular MD).

Scout~
Scout and Flowergirl, Thank you. Yes, I live in Washington State. I started taking sublingual B12 (2500mg pills) myself as my doctor just disregarded the whole issue! I managed to get the level up to 424 but am having to pay for blood testing myself as my doctor won't order it and even though I have great insurance, they won't pay unless the doctor orders it!! I haven't had it tested in a while. I will read up on the "methylmalonic acid test". I am QUITE SURE my doctor would laugh me out of the office on that one.

I also paid for a Candida Albicans test (ELISA) and just got the results--[COLOR="Red"]POSITIVE[/COLOR]. I don't even know if I should bother to mention that to my doctor as I hear most doctors do not put any faith in "Candida testing".

My ionized calcium has been high on all four occasions I have had it tested. 1.35, 1.35, 1.41, 1.42 (1.17-1.32). I also have "inappropriately normal" PTH. According to Dr. Norman's parathyroid.com website, the ionized calcium "Never Lies" but my doctor says I do not have pHPT. One of the main symptoms is bone (hip) pain! I am SO TIRED of switching doctors and having them all think I am crazy!!

I hope I can get to the bottom of the problem before it manifests into something unfixable! I am just not sure where to turn anymore!

Please do not suggest switching doctors. I have already switched my GP and I like the new one. (she just doesn't want to upset insurance by ordering so many tests) I THOUGHT she was listening to me and actually HEARING me (until the antidepressant saga!)! I have had xrays of my hips. I have seen a neurologist, a gastroenterologist, an endocrinologist and a otolarnygcologist. I did have precancerous polyps found during colonoscopy (taken care of) and I also have GERD found during endoscopy. I also have Hashimotos (HypoT). I wish I could find someone to tie things together. I will keep taking my own notes.

I also wanted to say that the only blood test that always comes back CLOSE to out of range is MCV. It is always 98 (81-100). If out of range makes no difference, this certainly wouldn't matter. Maybe a haematologist would be able to help? You guys are the best! Thanks, Hoppy;)
Hi Hoppy! :)

[QUOTE]I also wanted to say that the only blood test that always comes back CLOSE to out of range is MCV. It is always 98 (81-100). If out of range makes no difference, this certainly wouldn't matter. Maybe a haematologist would be able to help? You guys are the best! Thanks, Hoppy[/QUOTE]

It looks like you've taken matters into your own hands. I don't blame you for wanting to have all these tests done. I find that doctors tend to order the same tests over and over. I read that it is actually cheaper to run a whole panel of tests than just a single one. Hard to believe, isn't it? Managing to stay on top of things with multiple medical issues can be challenging. Many of us start out with high expectations, only to end up disillusioned. As much as we'd like to rely on our doctors for all of our healthcare needs, we have to do our part. This includes getting informed. The short duration of a visit to the doctor's office does not encourage any exchange of information. We are lucky if we manage to ask a couple of the most pressing questions in the time we have. The rest is up to us. :dizzy:

I have the opposite "problem" from yours. My MCVs are borderline on the low end of the spectrum. I've just looked it up, because I had no idea what that meant.
MCV - mean corpuscular volume- refers to the average size of the red blood cells.
When it is [U]elevated[/U] -macrocytic- as yours is, it means that the red blood cells are larger than normal. This is often seen in anemia caused by a vitamin B12 deficiency.
When the MCV is [U]decreased[/U] -microcytic- it means that the RBCs are smaller than normal. This is seen in an iron deficiency anemia, or thalassemias.
I'd say these types of abnormalities are NORMAL :D in anemic people.

Keep up the good work! :)
flowergirl
Hoppy......do you have pins 'n needles feeling in your fingers? Just wondering,because that's a definite low B12 symptom...also cold hands.Sorry you are having such a rough time....I have a PPO insurance and it's not that good either...it's a shame that drs. have to let the insurance companies decide what tests are allowed or not......not fair!

What I was trying to tell you before was that sometimes drs. will order more tests if you tell them you have a close relative that say had an "in range" level for a B12 test,but still had low B12 symptoms so their dr. ordered the other tests that go along with testing for "an occult B12 deficiency(meaning a "hidden" B12 deficiency).If you have a copy of your B12 test from the lab does it say what the "normal" range is?The lab my dr. uses says the norm is 200-1100...mine was in range at 278 when I ws first diagnosed in 1999,but the blood dr. said when it's below 400 they do a methylmalonic acid level test,because anything under 400 usually points to a hidden B12 deficiency.I know I've told you all this before,but really your level is not that good.

I wish your dr. could run that other test,but unfortunately I guess that's not going to come about.As far as your calcium level goes I would think the dr. would keep an eye on that one.

When my ferritin was 11 my dr. put me on iron pills...even though the range started at 10(being the lowest number in that range)...so it's plain to see that your calcium is just a hair away from being out of range.......

Scout~
Scout, Sorry I didn't respond properly last time. Yes my test range for the B12 was 211-911 and my result was 324. That is why the doctor said it is WELL within range! Maybe I can see how much that test is to do it myself. I just hate paying when we pay so much already for the good PPO insurance! Is it a haematologist that does B12 and Vitamin D (I'm definitely low in that!) and such? I will see if I can find one who considers a result below 400 low. Maybe I can get by the nurse! Hoppy
Hello,
Thank you for your response! The doctor did say take the B12 w/folic acid and it was slightly below range (whatever that means). What kind of Neuro. symptoms have you had with low B12 because I think I have had some too.

THANKS..
Hello RainbowsEnd....love talking with you about our B12 issues!

Hey I know the feeling...when I used to get my injections from the hematologist I always felt better...the first one was surreal..I felt like I was on a tranquilizer...all the anxiety just seemed to flow out of me...and I felt like that for 3 whole days.I wonder if I was getting methylcobalamin then?I'll have to find out on that one!

Yes I researched the pros and cons of methylcobalamin verses cyanocobalamin....of course my dear you were Absolutely right!I knew you would be....oh my gosh I hope my dr. will change me to methyl.I read cyanocobalamin hasto be converted to methylcobalamin and it actually has a bit of cyanide in it....Oh No Yuck!!!!That makes me want to vomit!!!!

Also they said that methylcobalamin goes directly to the tissues and repairs the damage better.

I'm so fortunate you shared your knowledge about this with me...otherwise I probably never would have known there was such a huge difference in types of B12 they use.:)

I just looked at my lbs from a few weeks ago...they are pretty good,but my dr. didn't check too many things.

My B12 was up to 420(normal 200-1100 here),my folate was 16.4(normal here is above 5.4)so that was excellent..my folate serum has always been normal so no folic acid deficiency there.Does your dr. check your MMA often...this dr. has Never checked my MMA:confused:

My methylmalonic acid(I suppose that is MMA isn't it?)has always been extremely high...that's what all my other drs. found out on my labs before.So I am curious to know how it is now:)

My other counts were:
white cells 7.0(3.8-10.8)
red cells 4.76(3.80-5.10)
hemoglobin 14.6(11.7-15.5)
hematocrit 42.5(35.0-45.0)
MCV 89.2(80.0-100.0)
MCHC34.5(32.0-36.0)
RDW 13.0(11.0-15.0)
Platelets 161(140-400)

So my dr. said it looks good...but I don't feel that good...hahaha!:(

So those are my current lab numbers.Any comments from you I surely love to hear!My dr. thinks my B12 is so good now...but he still gave me a shot,because he knows it drops soon afterwards.;)

Last time he checked my ferritin it was 11(the range was 10-90(I thinkthe high # was 90...not sure,but I know the low # was 10!)....but he never told me I needed iron........a year later a different dr. checked it and it was up to 55...so I have no idea what it is now,but my dr. says my iron should be okay,because my hemoglobin is okay.I just wonder,because I still get a lot of weakness in my hands and feet.:confused:

Labwork is so exciting though,now isn't it?Ha Ha Ha!I guess that's what we look forward to when we are being treated with B12 injections....so funny!:)

Is it better now that my white cells are up so much,because they are usually around 3 -4?Just wondering about that one.

I am so tired lately...I slept 10 hours last night(a lot for me!).Maybe I'll have some energy tomorrow...I hope so,because I desperately want to go shopping!I must note that I have a passion for the Teletubbies(my little grandson Benny is 7 and my husband and I raised him for over 5 years(his mom has emotional problems and my son had to work so we helped out watching the liitle guy..Benny has mild cerebral palsy...he talks better than kids his own age,but he uses a little reversable walker,but he can walk slowly with a walking cane now)...anyways Benny has loved the tubbies since he was a little baby and I fell in love with them too...hahaha!I found a lady who sells brand new teletubby stuff online and so I managed to buy quite a few tubby items from her....I'm so funny,aren't I?

So anyways I'm soooo happy your shot works so well for you...that put a Huge Smile on my face to hear that!!!!

Take care...talk soon~Scout
[QUOTE=emmaspaws;3761877]Yes, Scout and thank you for your reply. My mom was admitted to another hospital back in December (Neurology Unit) and had an MRI, CAT scan, etc. They said she was depressed. She was there a week and that's all they could find. Which is why I don't understand this diagnosis. She had a PET scan and it was to determine if she had Picks or Alzheimers and it came back as Early onset Alzheimers. Yet, MRI's are finding nothing. I don't know. I am having the ALF doctor test her B-12 levels and see if this is a possibility? Why didn't her neurologist think about this??? Ughh!!! If I find out that this is the reason for all of her Anxiety and confustion....I will be elated and really pissed off at the same time! She has lost everything, her life, her home, job, everything!!! Not to mention a whole year of her life! Thanks for the help...I'm so glad I found this board!!![/QUOTE]

Hi
I am so sorry about your mum.....When you have her tested foe B12 I recommend you ask for the following..

B12 serum
Homocysteine
MMA (these will be elevated in a deficeincy even if the levels are so called normal)
Folate

Most doctors just dont think about it if you dont have anemia which is soooo wrong.......

I believe but dont quote me on this if they have not ever checked your mums B12 levels and she has damage because of it is malpractice But docs may have done it & just never said anything as it may have been in the normal range which is grossly wrong anything under 500 can cause neuro damage...

But for now it is great you are getting this tested but please make sure to ask for all 4........I hope you get the answer because at least it can be treated.....

I wish you luck and all the best for your mum

Good Luck
[QUOTE=Rainbows End;3761927]Hi
I am so sorry about your mum.....When you have her tested foe B12 I recommend you ask for the following..

B12 serum
Homocysteine
MMA (these will be elevated in a deficeincy even if the levels are so called normal)
Folate

Most doctors just dont think about it if you dont have anemia which is soooo wrong.......

I believe but dont quote me on this if they have not ever checked your mums B12 levels and she has damage because of it is malpractice But docs may have done it & just never said anything as it may have been in the normal range which is grossly wrong anything under 500 can cause neuro damage...

But for now it is great you are getting this tested but please make sure to ask for all 4........I hope you get the answer because at least it can be treated.....

I wish you luck and all the best for your mum

Good Luck[/QUOTE]
Thank you Rainbows End...I just spoke to the doc at the ALF and he basically told me that I am in denial about my moms dementia and that I need to accept this. Okay, then please tell me why NONE of the Benzodiazepines (Xanax, Ativan, etc.) have helped her nerves or shaking. She is in a constant state of Anxiety and can't tell me why she's shaking! She walks around like she is in a daze and only speaks when spoken to and VERY softly. This is a woman in her mid 60's who just a year ago was living by herself, had her own business, cute sporty car, always looked nice, etc. Now she walks around hunched over and looks like she could be 80!!! It is so sad and I just can't stand for her to be in such turmoil. If I can help get rid of her anxiety or at least help it, then I wouldn't care if she could remember my name! Which, she does know by the way! Thanks for the help!
[QUOTE=Ashleymichele23;3761975]I am SO surprised at how these doctors do not check for the B12 deficiency when people keep coming back with the same symptoms. When I had my B12 checked a few weeks ago and the only reason I had it done was because of these boards and hearing the symptoms and I pretty much have most of them they talk about w/B12 deficiency, along with anemia, my doctor called me and said I was deficient and take B12 w/Folic acid, but that is all he said, I have no idea what my numbers were and he made light of it. This could be the reason why I am exhausted, why I feel brain fog and why I have weakness when I walk sometimes, it sounds like these are all symptoms of this. Why do the Drs. miss this?[/QUOTE]

Hi Ashleymichele23
Most certainly is thecause of your problems
It is great you heeded the advice and you obviously felt truth in it and had the tests good for you...
I dont know why docs dont pick it up perhaps they like to look for the major things first even though we know deficiency is very major.. I had many tests for it but at first it was always in the normal range even though it was low then it went way down past normal by this stageI was pretty well ill......I think if I wasnt diagnosed )and it really was very strange how I come to get that last test but thats another story I know persistance helped) I would have no memory either be dead or in a nursing home and i really mean that I was that bad & I am only 43.....
Can you get hold of your levels?
I also think he is being to blaze about this you need to have other tests to find out why you are deficient there can be some big issues underlying there that need to recognized gluten being one of them..
Also are you taking oral pills or injections and how much and what type of B12 these are all relevant......

Cheers
Rainbows End





All times are GMT -7. The time now is 10:50 AM.





© 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!