Blood work for b12 deficiency...what tests do I need?

[Abbie323]

Hi All,

I have FIVE doctors appts this week. Two of them are concerning follow up tests for my b12 deficiency and what could be causing it or what the deficiency can be causing.

I have already gotten some great advice on this board but I wanted to just flat out ask everyone WHAT SHOULD I MAKE SURE MY DOCTORS TEST ME FOR?

As of right now, all I know is I am b12 deficient and I am not sure of anything else. I want to make sure that I find out what is wrong with me now and before any of it gets worse.

Thanks for your time!

-Abbie

[rose]

If they had tested homocysteine and methylmalonic acid prior to treatment, they should test them after weeks of treatment to see if there are changes. However, I assume they did not test those.

If they tested B12 serum before, it would be logical to check it again. Although it is not reliable to diagnose or rule out, it may be useful to show a change. Also, a folate, ferritin, and potassium would be a good idea.

If they ordered CBC tests prior to treatment, those could be ordered again to see whether there are any changes. Keep in mind that since many do not show deficiency in CBC, it is possible that one who needs B12 would not show a difference in CBC.

They should check for antibodies to parietal cells and intrinsic factor. If both are negative, that does not mean you weren't deficient and aren't malabsorbing B12. But at least one is very often positive in cases of malabsorption. These tests would be a very logical next step in looking for a cause.

H Pylori could be tested for either now or if the two texts in the previous paragraph are negative.

Regarding damage, the usual neurological tests (reflexes, vibration sense, etc.) would be in order.

An MRI may or may not be ordered, but one must bear in mind that serious problems can be present before lesions show on an MRI.

This doesn't cover everything, but these are logical next steps.

Remember that a lot of things can change before between the time treatment begins and a few weeks after.

rose

[rose]

Since many symptoms overlap and being B12 deficient can interfere with thyroid function.

rose

[Abbie323]

Rose,

Thanks so much for your suggestions. I know my doctor is going to role his eyes at me tomorrow and accuse me of self diagnosing and so on, but I will insist that these steps are taken.

Also, I read online somewhere that nobody can have just a b12 deficiency, there is always something else wrong with you in addition. Is this true?

Thanks again!

-Abbie

[nopain]

If a Doctor is unwilling to listen to a patient then you need a new Doctor. It's just that simple. I've had a Doctor get up and leave the room before I was finished asking my questions. I had overrun my allotted 15 minutes. He then proceeded to charge me extra for the extra time I was taking. Apparently this Doctor was only concerned about profit.

I've had another Doctor refuse to look at all my reports and scoffed when I told her I was taking Tumeric.

There are very few Doctors who are really good at listening to patients.

So go ready to ask what you need to know. And if you don't get your medical answers you will at least learn if your Doctor is someone you should continue to see or move on.

They are either in the business to help patients or they are in the business to make money. And I no longer will tolerate the latter. It's my money I deserve to be treated as a patient and not a number.

[Abbie323]

Thanks for the reinforcement...I am just shocked at how uncaring doctors are. At the doctor's office last week, I broke down in tears just saying I could not deal with this anymore and he just told me I need an anti-depressant and that I am obviously anxious from self-diagnosing myself. I did not know that researching b12 deficiencies (since none of my doctors have given me any advice as to what I should expect) was self-diagnosing.

I feel like I am in such a tough spot, though. I am new to Orlando, Florida and know nobody else here. I am on my 4th and 5th doctors as we speak and I am still not satisfied. I feel so alone I cannot even begin to describe it. This situation has totally consumed my life and I am just growing tired of having to find all of these doctors on my own, having to miss work, having to drive across town for bloodwork or an mri, having to have all of my files faxed, and having to pay for the thousands of dollars worth of inconclusive tests I have had up until this point. Oh, and then my parents, who are 4 hours away, are certain all of this is in my head and that I am fine...so it is nice having their "support."

I just want to know what is wrong with me and how to fix it. I feel like the world does not want me to be okay.

Oh, and once again...I read online that you can't have just a b12 deficiency, is that true?

-Abbie

[B12Bob]

I would say that a B12 deficiency is a symptom of another problem. In my case it is something called SIBO. This is an overgrowth of bacteria in my small intestine which block the absorbtion of B12 and fat soluble vitamins.

My current doctor is kinda old school, but don't tell her I used OLD in reference to her, and she actually listened to me.

[Abbie323]

Don't worry, Bob...your secret is safe with me. I wish I could find a doctor to listen to me...old school or new school. PLUS, I bet she does not feel as old as me ;)

I was afraid that someone was going to respond with b12 being caused by something else.

I just wish I knew what that was so I could begin fighting it. I am just so afraid that I am never going to get better because this is all going undetected for so long. I just really want to live a full, happy life so I am growing frantic trying to get this all taken care of.

I have my list of things to check for when I go to the doc tomorrow. He did some blood work last week and we are going over it tomorrow. I hope the answer will be present based on the blood work that has been done but I feel like I know what he needs to do next if it isn't.

If this doesn't work out, I am coming to stay with you, Bob, and I am going to see your doctor! (don't worry, just teasing)

-Abbie

[glenntaj]

--for B12 deficiency to exist in isolation, due to a number of factors that can block its breakdown or absoption.

B12 is one of the largest molecules that the body needs to absorb for its regular functioning, and there are a lot of things that can get in the way.

Now, asking whether a problem with B12 can happen alone may be mostly a matter of semantics. There is always a reason B12 is not being broken down or absorbed, and that can be considered the primary problem (such as lack of intrinsic factor in the gastric tract). Unfortunately, often the reason is hard to find--assuming one even has a doctor that knows what to look for.

Perhaps a better way to say this is that yes, B12 deficiency can be a primary problem--and it can lead to all manner of secondary problems (not just neurological, but circulatory, gastric, pulmonary--the list is extensive).

It can also be a secondary problem--for instance, celiac disease can lead to B12 deficiency (and a lot of other things). In a case like that, if one has peripheral neuropathic symptoms, it may be hard to pin down if they are due to the autoimmune attack on nerve gangliosides of the anti-gluten antibodies themselves, or due to the lack of B12, or both (and there are very few facilities out there who understand and administer the specific tests that would be necessary to pin THAT down).

The good news, at least, is that it easier to combat B12 deficiency than it is to combat a lot of other deficiency states--one can heavily supplement B12, as it has no known toxicity in itself. Studies in Japan have used up to 36milligram/day dosages to help with central nervous system deterioration (normal USDA minimum daily requirements are listed in MICROgrams, so these dosages are thousands of times that) with no toxic effect. The body uses what it needs (and what it can), attempts to store some in the liver if there is nothing interfering with that process, and excretes the rest.

[Abbie323]

It was no use.

The doctor I saw this morning was a neurologist that was recommened by my GP for nerve tests. He did some blood work on me and today was our follow up.

Not only did he refuse to tell me what all was tested in the bloodwork, he refused to go over the results with me


He said all of my symptoms are anxiety alone and I am not experiencing anything from the B12. He said that my b12 deficiency causes no symptoms and that I just need therapy.

He said that there is nothing else wrong with me and that he is the doctor so he knows what causes b12 deficiencies and they are not a big deal.

He said it was my diet that caused it, but I eat meats and seafoods and milk products.

He was a waste of my time, energy and money.

Sorry, just had to vent.

Thank you all again for your feedback, though. I hope to find a doctor that will use this information soon.

-Abbie

[B12Bob]

They thought I was faking the symptoms so I went through a day of psychological testing. Guess what. It said that I had some kind of organic problem. Did the doctor listen to the test results that he ordered? Of course not. It took another couple of years to get a doctor to look at my symptoms logically. They are currently finding problems with other vitamins. A bone density scan showed that I have osteoporosis. My testestorone and parathyroid were normal, but my vit D was almost off the scale on the low side. I, of course, suspect that all my fat soluble vits are low.

[rose]

Not a big deal, huh. Atrophy of the stomach lining (often with other autoimmune problems), overgrowth of H Pylori (ulcers), etc.

If you are in the US, you have a right to copies of the lab results, so the arrogant %&$ &*(% can't keep the information from you.

Yes, as Glenn said, there is always a reason one cannot absorb/transport or otherwise use B12 in food, or more severely in the usual doses of supplements. And it is not always something you can change. For instance: the most common cause is the body's destruction of cells in the stomach lining.

The important thing is to get lots of B12. Then one can always try for a reason.

I also was put off, treated as though I got my jollies going to docs for nothing (in spite of the fact that my history showed exactly the opposite), and they fiddled around while my central nervous system degenerated.

Take care of yourself.

rose
http://roseannster.googlepages.com/home

[rose]

Both vitamin D and B12 deficiencies can affect bone densities.

I have seen that written of mostly in males, regarding the B12.

Also, there is reason to believe that many people who become deficient in B12 fail to use fats properly. And, of course, fats are very important. Acetyl-L Carnitine might help with that.

rose

[B12Bob]

The contributing factor to my B12 and other deficiencies is something called Bacterial Overgrowth Syndrome (http://www.gastroresource.com/GITextbook/en/chapter7/7-17-pr.htm) or SIBO for short. I had the hydrogen breath test to confirm that this was indeed my problem a few months ago. SIBO causes your body to not absorb B12, fat and therefore fat soluble vitamins. They are having moderate success treating this, but I am taking B12 injections, thank you Canada, and other supplements. I'll add in the Acetyl-L Carnitine.

The changes in my mind and body since I began taking the B12 are incredible. Before this is over my endocrinologist is going to be a believer in B12.

[Traveler]

Hi, Abbie323,

Sorry to hear about the poor communication skills of your neurologist. Yikes, he needs to go back to school or something.

One possible cause of B-12 deficiency is long-term use of stomach acid reducers like Prilosec and Prevacid. The patient information leaflet that the pharmacy gives me with my Prilosec states the following under "Side effects": "Tell yur doctor immediately if any of these highly unlikely but very serious side effects occur: signs of vitamin B-12 deficiency with long-term (over 3 years) treatment (e.g., unusual weakness, sore tongue, numbness or tingling of the hands/feet.) I have noticed that my local pharmacy is the only one who has had this information with the Prilosec. It is not included on the Prilosec package insert nor from the pharmacy that Priority Health deals with in Florida.

You can find a lot of information about B-12 deficiency on the "peripheral neuropathy" forum. I started having symptoms of neuropathy some time ago and read about B-12 on this forum, bought a bottle of B-12 in the form of methylcobalamin (not time-released) as recommended by Rose and the tingling in my hand went away. When I stop taking it, the tingling comes back. I think anxiety is also a symptom of Vitamin B-12 deficiency --one feels like they're ready to fly out of their skin. So don't give up. If you know definitely that you have a B-12 deficiency, the advice was to start with 5000 mcg. a day for a month and then drop back to 1,000 mcg. or 2,000 mcg. a day. It is quite expensive but so is going to doctors. It is a lozenge and is dissolved under the tongue. One should also take a vitamin B-complex at another time of day with a meal and eat plenty of fruits and vegetables. Be careful about taking too much vitamin B-6. I believe the advice was to limit B-6 intake to 100 mg. a day which is still a fairly large amount. Mega doses of B-6 can cause neurological damage over time.

I did not read all of this thread--you may have already tried these things. Good luck to you.

Traveler

[B12Bob]

One of the causes for SIBO that I mentioned above is use of drugs like Prilosec and Prevacid. Normal stomach acid keeps the bacteria from invading your small bowel, but these drugs reduce the amount of acid available to fight the invasion. It took me years to get tested for it, but my wife went to a GI doc last week and he wanted to test her for it because she is diabetic. Some form of diabetic neuropathy keep the intestines from cleaning themselves of the bacteria. She is going in this morning for the hydrogen breath test.

[Traveler]

B-12 Bob,

Thanks for this information. I have been on Prevacid, Prilosec or Aciphex for 5 years and just have not had good healing of the esophagus. I have chest pain or discomfort most of the time. Now the doc has me on 40 mg. twice a day to try to get it healed. They are reluctant to prescribe Nexium because of the cost--the insurance companies won't pay for Nexium until all 3 or the other drugs have been tried.

Has anyone had experience with Nexium? I am also on a Parkinson's drug. PD can also slow things down in the digestive tract. What are the symptoms of SIBO?

Traveler

[B12Bob]

excess gas
abdominal bloating and distension
diarrhea
abdominal pain
constipation
Weight loss
Also, vitamin and mineral problems.

The symptoms are a lot like IBS.

I was on Prevacid for several years, but because of insurance I had to go to Protonix. My SIBO symptoms cleared up for a while, But they returned. It didn't do as good a job with the GERD.

[Traveler]

Thanks, Bob, for taking the time to explain.

Traveler

[rose]

When stomach contents go up into the esophogus where they don't belong, damage is caused.

If the stomach acid is normal or low (which can be the case, and which is more likely as one ages), the acid reducing drugs can make the problems worse.

Traveler, have they checked your parietal cells or otherwise investigated what your acid status actually is?

rose

[Traveler]

Rose,
I have had three endoscopies since 2001 where they look into the esophagus, stomach and a little into the small intestine, I think. Nothing was ever said about parietal cells. I asked him at the time of the procedure whether H pylori might be involved and after the procedure he said my stomach looked fine. Just the lower esophagus is irritated. I have wondered about parietal cells and I believe I mentioned intrinsic factor to him but it fell on deaf ears or maybe I just don't understand. I do have Hashimoto's Thyroiditis which is an auto immune disease and I read that people who have one auto immune problem tend to develop another one. Do the parietal cells make enzymes (intrinsic factor) which metabolize B-12? Do they work only in the presence of acid? Can doctors tell by viewing the stomach whether the parietal cells are working properly? I believe there is a 24 hour acid test, rather uncomfortable, right ? (because the tube is left in) Maybe it isn't done this way anymore. Can the parietal cells be tested for auto immune antibodies? And if so, is this done during an endoscopy?

By the way, he did a biopsy to be sure the irritated cells weren't becoming pre-cancerous.

[rose]

At least one of two simple blood tests would be likely to show positive if you have antibodies to the parietal cells or to intrinsic factor specifically. The tests are not 100%, but they do catch the majority of cases.

Yes, having another autoimmune problem makes you even more likely to have these antibodies.

As the stomach atrophies and parietal cells are affected, the acid level will likely eventually be too low to break B12 out of foods. At that point a person would be able to absorb B12 from a small dose, even the tiny one in a multivitamin, but not from food unless the vitamin was added to the food (as in a fortified cereal).

Eventually the stomach lining loses its ability to secrete intrinsic factor. At this point the person can no longer get B12 from a small dose. That person needs either shots or 1000 mcg or more per day orally to be confident that enough B12 is getting through for use and to rebuild stores. Typically that person would get about 10 mcg out of a 1000 mcg dose, because the intrinsic factor is not there to "escort" the vitamin to the ileum to be absorbed. The very large dose allows a small amount to "spill over" and be absorbed by default.

I don't have information about the more invasive tests on the top of my head, but perhaps someone else does. I would not want to do those until the less invasive ones were done, which might be as good or better.

One could determine by looking at the stomach lining that it appears normal, so has not atrophied a great deal. But that does not prove that the stomach is not going that direction and producing less acid than it should, and possibly even heading toward loss of intrinsic factor. I would want the antibody test.

Also, I would not rely on looking at the stomach to rule out H Pylori. There is an antibody test for that too.

rose

[Cry Tears]

Today I went to see my PM nurse Practioner...but he'd been temp replaced by a new NP who saw me. She stated that Fibromyalgia is her passion, that Dr's are usually unwilling to treat....finally someone who is willing to help us!

As we talked about my health issues I shared with her that my Neuropathy had been just about cured by taking B12...and about this web site....

Someone she is close to is having Gastro Intestinal issues, PN, other Neurological issues, Thyroid and a growing list of other issues.
She is terribly worried about them, but doctors are unable to find whats causing all this.
I begged her to log on and seek this wonderful advice so freely given here regarding B12 and to get in touch with Rose and MsDbtfyre as well.

I told her the numerous dismissive Neuro docs I'd seen and non of them had a clue as to why I had a moderate level/sock glove pattern of Peripheral Neuropathy...that I was made to feel ashamed because I refused to take increasing amounts of Neurontin aka Morontin!

I forgot to mention my total loss of balance, burning lips, muscle spasms/fistulations, severe muscle weakness to where I had to use a walker and handicart, Thyroid shut down and that my Nerve Conduction and EMG done in mid June, showing moderate level of PN.
Imagine being refered to the ALS clinic! Absolutley Terrifying!

After my nightmare early spring & into late summer from Haides that was spent 99.99% in bed unable to even do simple grooming task, (had part time attendant) un able to drive, walk, talk or stand....I just about gave up.

I went to every doc appointment in my jammies...husband had to drive me. I'd sleep in the back seat on the way wishing we had our old motorhome back.
I am serious when I say I didnt even have enough energy to flush the toilet...let alone crawel the 10 steps to it!

I wanted to know why I had Neuropathy as I'm not diabetic. I did not have the stamina to even sit up at our main home computers.
Luckily my husband got me a lap top so I could do some research.

Non of the doctors, neurologist had a clue as to why I was going down hill fast. They could clearly see something was terribly wrong with me.
I'd ask if this could be a vitamin or mineral deficiency because of the 2+ year bout with severe anemia from the AVM (arterioveinous malformation...basically an anuerism that was baseball sized in my upper small intestine) My hemaglobin was 5.1 at its lowest...and only got up to an 8 after 2 units of blood.:eek: I had over 25 transfusion "sessions".

Thats a lot of pokes and I have a needle phobia.During this severe bout of anemia I had an insatiable want to sniff shoe polish...thinking I was going crazy I didn't tell anyone. Its called Picca...some people eat dirt, ice cubes or other things because of mineral or vitamin deficiencies. I now detest the smell of shoe polish....brings back nightmare memories.

I had every study imaginable....nothing showed up except I had Crohns disease and had two recent bowel resections.
Luckily....the swallowable camera I'd been given got stuck inside me.
They opened me up, found 3 feet of rotted intestines....but I had the best surgeon on this earth....he decided that was not the source of my bleeding, so he spent nearly an hour searching every inch of my intestines and found the baseball sized AVM bleeding away.
He resected that portion of my intestines as well....no more anemia!:p
Despite my having very active Crohns disease, years of irritable bowels, severe diarreah....not a single person suggested I be given B12:eek:

I did keep asking...But I was drinking this super vitamin drink loaded with B12 but I dont absorb well....and my B12 level was 232....normal! Yes it was normal level in my blood...but not in my tissues...no moons in my fingers.

Normal for what? A plant, shrub or rock! Too bad those docs weren't reading the latest info in the JAMA journels! That US standards are way off.
It took several weeks, But Thank God I found Braintalk!
I made contact with Rose. Husband followed advice and purchased my first bottle of the Methyl B12 Sept 3, Shot out of bed :D Sept 13. I had enough energy to finally begin living again!
In mid Oct 15 I kept my long awaited appointment for the Mayo Clinic. They repeated my nerve conduction and EMG were then back to "normal"....
Although I do have some residual burning on my feet and hands at times....I've gone 5 days without my B12....my lips are starting to burn....how stupid is this! I am always forgetting to take it! DUH!

I'm hoping this Nurse Practitioner will pass this info along to her other PN and Fibromyalgia patients as I know most will benefit from this important vitamin!
And do you think it was just a fluke she saw me today? I think not!
Perhaps Divine intervention played a part in this today?
I love it when God Winks!;)
Thanks to Rose....so many suffering people have had answered prayers!
Just read the stories of how many have been helped...
gosh I miss the old post that were lost in this summers BT crash...do you think we'll ever get them back? Hope so!
I'm not saying I've been totally healed....I still have a lot of other health issues and my bodys making repairs has not been easy! I've had a few unerving things happen, but it goes away rather quickly.

Its been a long and painful journey, but I'm so thankful I've gotten this far!
Blessings to my fellow suffering BT freinds.
Cheryl
Blessings, Cheryl
To Everything there is a purpose.

[Traveler]

Wow, Cheryl, that is quite a story. SO glad you started reading Brain Talk and that you are feeling better. To Rose, Thank you for the explanation of parietal cells and antibody tests. I will ask for a test from the endo doc but I have a feeling he won't go along with it. Next thing you know, he will be recommending surgery to wrap the stomach around the esophagus. That is done as a last resort.

Traveler

[rose]

Many of us (some here now, and some here over recent years) would be long dead if deficiency continued much longer. I would have died sometime in 1999. As it is, I was eventually diagnosed and treated by a neurologist (a rare one who knew to test for B12 appropriately), but only after much damage had been done to my central nervous system.

Many things can affect moons. It certainly is possible that some lack moons and get them back with B12 treatment, but it is important to recognize that moons or lack of moon cannot show whether someone does or does not need B12.

rose

[copperhead]

The contributing factor to my B12 and other deficiencies is something called Bacterial Overgrowth Syndrome (http://www.gastroresource.com/GITextbook/en/chapter7/7-17-pr.htm) or SIBO for short. I had the hydrogen breath test to confirm that this was indeed my problem a few months ago. SIBO causes your body to not absorb B12, fat and therefore fat soluble vitamins. They are having moderate success treating this, but I am taking B12 injections, thank you Canada, and other supplements. I'll add in the Acetyl-L Carnitine.



Has any doctor brought up the issue of faulty MT function?

Metallothionein (MT) is a group of proteins which sequester heavy metals and remove them from the body. These proteins will also help with ridding the body of infections too, including candida. If you had nutritional deficiencies that might explain why there was a problem with MT not doing its job. But some people do have a problem with MT or metal metabolism because, I think, of genetic problems (Austism might be an example).

There is no test for MT but some recommend that you have blood levels of zinc, copper and ceruloplasmin to make sure that these two minerals are well balanced. (Ceruploplasmin is the protein that puts copper into your bloodstream so copper can do its job in the body.) If copper and zinc are not balanced, then MT is probably not able to function properly.

Has any doctor discussed the possibility of a nutritional cause for this problem? Most doctors don't have enough understanding of nutrition to consider this possibility though.

This site mentions MT briefly as it relates to candida and food allergies. (under the quesiton: How does MT functioning relate to the need for some autistics to avoid casein from milk products, and gluten?)

http://www.hriptc.org/latitudes.pdf

Another reference:

http://www.bbbautism.com/dan_william_walsh.htm

15. Expected Consequences of MT Dysfunction
(list of what you would expect to see with MT dysfunction)
- Hypersensitivity to HG, PB, and other toxic metals
- Zn depletion and Cu overload
- Hypersensitivity to vaccines
- Incomplete breakdown of casein and gluten
- Intestinal inflammation, diarrhea, and yeast overgrowth
- Reduced stomach acid and diminished secretin release
- Tendency for seizures, anxiety, and emotional meltdowns
- MT kills candida (so overgrowth is common when MT is stopped)
- Higher vulnerability for males than females (because hormones factor into this somehow and boys have more of one type than girls) (I think I had read that testosterone suppresses MT somehow.)

I did a search with William Walsh's name because he seems to be one of only a few people researching MT. There really isn't that much info about MT on the internet. This subject is simply not researched enough.

Have you ever tried Zinc Status? Zinc Status is sold in health food stores and tells you immediately if you have a zinc deficiency. With candida problems you probably have a zinc deficiency or a copper overload. Of course that is just the beginning of the nutritional problems you may have. (Obviously you would probably have these deficiencies NOW because of the existing damage to your GI tract, so either way you need a doctor who has experience treating patients with nutritional supplements.)

This site explains how some people with ASD (Austism Spectrum Disorders) issues may get B12 injections.

www.bhare.org/usman.ppt