Hi, I would like to know what is the best way to assess the damage caused by B12 deficiency. I have suffered of it for a long time and the stupid doctors I've seen wouldn't find out... Now I'm probably f***ed up... Which test should I get to evaluate this? Thanks in advance
Hi Londres, thanks for your answer.
My result was 12.36 pg/ml. The blood was drawn on September 14th and I got the some days ago. Since then, I received two B12 10000 mcg IM. I'm getting another one in one hour. I was told to see a hematologist for therapy and further testing.
Some of the symptoms I have at the moment are fasciculations, mild lightheadedness, moderate brain fog and mild muscle weakness. I think I have another psychiatric symptoms too.
Just wondering, is SPECT useful in cases like this to evaluate the mental function? Which specialist should I see to order it and also NCS and EMG? Should I ask referral to a neuropsychiatrist?
Also, do psychiatric symptoms related to B12 deficiency tend to resolve with therapy? Thanks in advance
"Also, do psychiatric symptoms related to B12 deficiency tend to resolve with therapy?"......Yes, of course, however, it may take a while for this to resolve.
Your b12 level is VERY low and I am 100% sure all these symptoms are related to this low b12 level.
Definitely follow up with the Hematologist.
I am not sure why you are inquiring about this SPECT imaging. Have you had an MRI done? What "psychiatric symptoms" are you having? Brain fog and lightheadedness aren't "psychiatric symptoms." I don't think there is any need to see a Neuropsychiatrist, however, you can consult a Neurologist.
I think if the low b12 level is corrected the situation will resolve, however, you can get the NCS and EMG testing to see if you have experienced any nerve damage and those can be ordered by a Neurologist.
Thanks for answering. I didn't consider lightheadedness a psychiatric symptom, but I thought so about brain fog. Anyway, when I wrote about other psychiatric symptoms I was thinking about apathy, lack of emotion, depression, poor memory, mood swings, irritability, etc. I wasn't like that, I've always been a happy person until I started having these undiagnosed symptoms. I wondered if SPECT of brain would be useful for this.
I did have a MRI, CT of brain, but that was a month ago.
The onset of all these symptoms was on July 20th, since then, I've seen a lot of specialists, but none of them was able to find my problem. I've suffered a lot of stress due to this, I even told that I had diseases like Lupus, MS, etc and went through a lot of tests to rule them out. Since time was passing and I didn't get any answers, -even some doctors would send me to a psychiatrist- I sat to think about my problems and decide what tests to ask. I tried to convince the neurologist that I was having peripheral neuropathy, but he said I didn't. It was when fasciculations started that I thought of low B12 and tested my levels of it and B9. Even B9 is normal-low.
I'm seeing a hematologist in some minutes, I'll let you know what he tells me. Again, thanks for your answers.
ok, but are these symptoms related to B12 deficiency? If not, what are all the symptoms related to it?
So yesterday I went to a hematologist and he told me to stop with the 10000 mcg B12, which I had been previously prescribed. Now he wants me to start on folate. I wonder why would he tell me this even when my B12 level is very low. I was even thinking on going on with the B12 therapy before starting with folate. What do you think?
Here's what I think.......If these "psychiatric issues" are extreme you should CONSULT the Neuropsychiatrist and get his/her opinion about the situation. It can be decided by the NP if a SPECT imaging is necessary or not.
Secondly, with a B12 count that low I am pretty certain that all your woes are related to this, HOWEVER, I can't say this 100% that is why I recommend you see a NP to make sure there is NOTHING else going on if you WANT that OR you can do this folate or B12 therapy and see if these psychiatric issues subside along with your other symptoms.
Thirdly, did you MENTION these "psychiatric issues" with this Hematologist? He wants you to stop the B12? That makes no sense. There must be a balance with Folic Acid, B12 and Iron levels. Where is B12 level now? Where is your iron level? Unfortunately, I can't override what your physician has told you to do......this would be your decision about what you will decide to do. I am not sure what this physician is doing.
I did mention my psychiatric issues to my hematologist. He told me they would resolve soon with the B12 therapy, however he says it's not necessary anymore and wants me on folic acid therapy. He said I need to recheck my B12 and folate on 31/10.
I too consider that stopping the B12 makes no sense. Since cobalamin is not toxic as far as I'm concerned, I have decided to dismiss this suggestion, go on with the therapy and start on folate when I'm done with the last B12 injection, I had been prescribed six and received four so far.
He said that my B12 deficiency was presented without anemia (my hemoglobin is 14.1), thus, the fatigue I feel cannot be explained by low B12. Do you agree with this?
Ok, so this hgb is 14.1, which is decent. What's your iron panel look like? Just because the hgb is ok doesn't mean anemia can be ruled out.
In my opinion, a low B12 would correlate with fatigue.
BTW: what was your folate level BEFORE he started pushing this folic acid therapy? Did he do a B vitamin panel on you checking all the major serum B vitamin levels? Just not understanding where this "folate therapy" is fitting in.
All these tests were taken before starting with B12 and going to the hematologist. What other tests do you suggest me to take? Also, I went to see a gastroenterologist who said that it's very probable that I suffer of malabsorption and appointed me for an endoscopy. I asked if there are other vitamin malabsorptions related to this one and he said that if there's some kind of problem which I don't remember in the GI tract, there is probably malabsorption of many other vitamins. Do you know what malabsorption of other vitamins are related to B12 malabsorption?
By the way, I asked the hematologist if the therapy could be intravenous instead of IM. He said that there is an option, but I would be hospitalized and there's no need for me to be exposed to viruses in the hospital. Ok, that makes sense. But I was wondering, is the IM therapy efficient? Is there a possibility that the vitamins are not being absorbed even via IM?
One last question, can all these vitamin deficiencies be related to overexercise and fingernail discoloration? Thank you very much for your answers!
By the way I checked out the tests he wants me to have on 31/10 and, I'm not sure I understand what he wrote, but it looks he requested CBC, A and B vitamin panels and complement C3 and C4. There's one more question I forgot to ask you, how much time does it have to pass since the last vitamin injection to get a more accurate result in the vitamin testing?
Oh, there are alot of questions here and will try to answer them.
"What other tests do you suggest me to take?".......The Hematologist has already ordered the B panel, however, he should be ordering an Iron panel as well UNLESS this has been done already and a vitamin D level as well. The labs he has ordered are decent.
Strange that you can't get a simple vitamin IV infusion in this Hematologist's office. Totally agree it would be foolish to be going to the hospital for this infusion related to viruses, bacteria and plus the costs would NOT be cheap. Well....at this point they aren't sure what this is so I would recommend you DO these injections and see what happens. I nor anyone else at this point can say this is any "malabsorption" issue......could or could not be....that remains to be seen.
When are you supposed to see this GI Specialist and get the Endoscopy done? The condition that came to mind was Celiac's disease in regards to a vitamin malabsorption problem. It is possible to have Celiac's WITHOUT experiencing GI symptoms.
"Do you know what malabsorption of other vitamins are related to B12 malabsorption?".......this is usually other B vitamins and iron. It really depends on the condition a patient has.
"One last question, can all these vitamin deficiencies be related to overexercise and fingernail discoloration?" Overexercise? What kind of exercise regimen were you doing? Well.......I wouldn't say "overexercising" can cause vitamin deficiencies per se. I would say that if you aren't eating in balance in regards to your diet and overexercising then you MAY have deficiencies especially if you have other lifestyle patterns that aren't healthy as well. Fingernail discoloration is associated with several different conditions and diseases and not only vitamin deficiencies. With that being said, B12 deficiencies and anemia CAN cause abnormal changes with the nailsbeds or nails.
There should be AT LEAST 2 weeks- 1month time frame BEFORE rechecking the B12 lab or the folate. In other words, the level can be checked two weeks AFTER the therapy is started, however, checking after one month would be better.
BTW: There are really only 2 labs in the group of lab results you've mentioned that are of concern: the folate and the B12.
Well... WOW....that was alot, so I hope I answered everything. I think after you get all these deficiencies taken care of you will notice these symptoms subsiding.
I'm sorry to ask you so many questions, but actually if you ever want to see my previous posts, you'll see how many things I thought I had. Now that I found the problem, you're the only one who really knows and answers me about it. That's very kind of you.
Regarding the possible malabsorption, well, I did experience GI symptoms all this year. Consultations to GP didn't really improve the symptoms. It was only after I suffered a discoloration (after a day of overexcercising) and started having weird symptoms one week later that I started seeing many specialists. The bad thing is that since a purplish fingernail discoloration primarily suggests heart or lung problems, I didn't connect it with the GI symptoms (nor the doctors did), so between the specialists I had seen there were a pulmonologist, a cardiologist and then I was referred to a rheumatologist. After ruling out lupus, scleroderma, sjogren, MS, and other autoimmune, I stayed with this doctor and demanded him to test me for vitamin levels. Then I found out the cause to my suffering.
Now what is weird is that during this nightmare, I also happened to consult two different neurologists. The second one only said that I had upper cervical problems due to stress and should correct them with massage and heat, but the first one ordered a CT and since nothing came up from it, he immediately said that all the symptoms I had in that moment (lightheadedness, blurry vision, buzzing in ears, concentration problems and other things) were due to stress. He said that he could only prescribe an oral liquid medicine which would improve the nervous system. This medicine somewhat helped with the lightheadedness, so I allowed myself to relax a little bit. Then I found out that this medicine had 500mcg of cobalamin.
Now I wonder, if I've been taking this medicine for a month before checking my B12 level and still got a very low result, wouldn't that point to malabsorption? Or simply this medicine had very little B12?
This said, is it guaranteed that an IM B12 will be absorbed? Or should I insist on IV just to be sure? I ask this because my fasciculations don't seem to be stopping with the therapy. Maybe it's too soon, or I don't know...
Again, thank you very very much for your useful answers and advice, Londres. And I'm sure you understand why I'm being so inquisitive :)
"Now I wonder, if I've been taking this medicine for a month before checking my B12 level and still got a very low result, wouldn't that point to malabsorption? Or simply this medicine had very little B12?".....How often were you taking this medication with the 500 mcg of B12? 500 mcg of B12 isn't very much. A low B12 level doesn't resolve quickly for alot of patients......it takes time. As long as your level is elevating and not staying the same or dropping I would be more apt to say your MIGHT NOT be dealing with a malabsorption problem, but I can't say that is 100% so.
You are so welcome for the advice. Glad to have helped some.
Just keep in mind medicine is like detective work; it may take some time to figure or find out the culprit.
I have autoimmune pernicious anaemia (rare juvenile form so i have had symptoms for decades). I use sublingual B12 spray daily (currently 2000mcg). Excellent! B12 deficiency symptoms return in days if i stop taking my B12 sublingual.
Delivery System/Rate of Absorption*
Pill or tablet - 10%
Capsule - 20%
Gel Cap - 30%
Transdermal Patch - 45%
Sublingual Liquid - 50%
Intramuscular Injection - 90%
Intraoral or Sublingual Spray - 95%
Intravenous Injection - 100%
I can't say this is a "malabsorption" issue as diet and other factors can cause B12 deficiencies. Perhaps your level was even lower than it was BEFORE taking this medication with the 500 mcg of B12. If a level drops to the level you have usually B12 IM therapy is warranted. There is no way to treat a level that low with ANY pill ALONE regardless if this was a malabsorption issue or not.
I would leave this to your physicians to sort out if this a "malabsorption" issue or not. I can't comment on if it is or not as I am not privy to medical records or your medical history. Again, can't comment on this.
Thank you very much Londres! I hope doctors are soon able to rule in or out malabsorption.
Red_Star that was a very complete answer and so useful information! Thanks!
By the way, did you have psychiatric symptoms because of pernicious anemia? Did you have peripheral neuropaties? What were your symptoms exactly? Did them all reverse with therapy?
Hi again, well, this is what I did so far. I got the 10000mcg B12 injections for six days, then the folate therapy for three days (15mg folate, 1mg B12, also other B's) and then bought five 10000mcg b12 shots again and applied two yesterday, one this morning, tonight I'm gonna get one more and will end tomorrow. Since B12 is harmless as far as I'm concerned, I just got more.
I wrote to labtestsonline and they said that my B12 shots won't affect my test results as long as I fast 10 hours prior to the blood draw. So I'm gonna finish with this package and will wait to get my blood drawn for B12 on 31/10.
In the meantime, I had my doctor prescribe me further testing, and he requested ferritin, iron and calcium. The results are the following:
What do you think of these results? I also wanted to test Vitamin A, C, D, E and K, Zinc and Anti intrinsic factor, but found out that my stupid insurance won't cover the testing. Unbelieveble, right?. Whatever. I'll see if I can afford at least Vitamin D and intrinsic factor.
Furthermore, my GI doctor prescribed an endoscopy and biopsies of stomach and duodenum. I'll receive those results on Wednesday. So far the only thing I know so far is that the endoscopy suggested congestive gastritis... Congestive gastritis? What's that? I already researched but just found out that my stomach is full of mucus???
However, there's something that still has me concerned. My chronic purple discoloration. I found a couple sources on the web which state that it is caused by B12 deficiency, but so far it hasn't corrected, despite all the shots I've gotten. Are you aware of any link between this discoloration and B12 deficiency? Do you think it might take a while to resolve? Since no doctor so far has been able to tell me why the h*** I got that discoloration, do you think I should insist on it? Maybe trying another specialist?
Oh, and by the way, I must say that so far with the therapy the ONLY symptom which has improved is the fatigue. The rest, the same than before. I'll try to be patient and hopeful, though it's quite hard sometimes. My mind is playing me a very hard game these days. The most distressing is the brain fog. I hate it. If I was just able to fully recover my mind back again, I don't care of the rest if that was the price.
Whatever, I'll be waiting for your response. All comments are welcome. Thanks in advance.
Hi again, I received today my new lab results. My hemoglobin has slightly increased (from 14.0 to 14.5), also my C3 which had decreased returned to normal (from 56 to 88.6 mg/dl).
I think I've been a bit better these days. My serum Vitamin B12 is now very high (>1200), but what I found abnormal is Vitamin D (12.8 ng/ml) and a low normal zinc level (63 ug/dl). I showed the test results to my hematologist but he only paid attention to the B12. Should I get another doctor? Is it quite important to raise my Vitamin D levels as soon as possible?
Psychiatric and neurological are symptoms of vitamin B12 deficiency. It is unclear why vitamin B12 deficiency leads to prominent neuro-psychological symptoms in some patients and not in others however.
My psychiatric symptoms included depression, irritability, paranoia, mania, psychosis, self harm thoughts, apathy, memory loss (mid stages of dementia), Obsessive Compulsive Disorder (OCD).
Neurological symptoms included ear numbness, enlarged pupils, weakness, permanent damage to many cranial nerves, right arm muscle atrophy, paresthesia of arms and legs, tingling in fingers, numb left arm and hand.
It was about a year of B12 replacement to reverse 90% of nerve damage in my arm/hand (this symptom ocurred just prior to starting B12 replacement) and for the OCD to go away.
Most of these symptoms reversed although i have permanent nerve damage, holes in my memory, and i still have muscle atrophy in my right arm. Nerve damage may be permanent if B12 treatment is not started within 6 months of symptom onset.
I've also had many other nutrient deficiencies including vitamin D deficiency (12ng/ml) and zinc deficiency (showed up with zinc sulphate taste test).
My vitamin D deficiency symptoms included bone pain and a very poor immune system (studies show vitamin D activates T cells to kill off bacteria and viruses) - bronchitis for three weeks, strep throat for a month, strep throat again for over two weeks, and a cold...in 5 months.
My zinc deficiency symptoms included poor taste and smell, white spots on nails, and night blindness.
The amino acid histidine, zinc, vitamin B1 (thiamine), vitamin B6 are all needed for hydrochloric acid (HCL) production. If any of these are lacking in the diet or not absorbed properly, this can result in hypochlorhydria (low stomach acid). There are other causes of low stomach acid from various medical conditions to aging.
Low stomach acid impairs the body's ability to absorb nutrients. Try the baking soda (sodium bicarbonate, not baking powder) test...
The following steps help to determine your stomach's acidity:
1. Perform this test first thing in the morning on an empty stomach (before
eating or drinking)
2. Dissolve ¼ teaspoon of baking soda into an 8 oz glass of cold water
3. Drink the solution and start timing
4. Record the time until you first burp up gas
5. Perform this test for 5 consecutive days (or longer) at the same time each day to give a better estimation of your stomach’s acidity
Time until first burp:
If you burp immediately and excessively your stomach acid level is probably too high
Under 2 min: indicates normal acidity
2 - 5 min: low normal acidity
Over 5 min: possible hypochlorhydria (low stomach acid)
No burping indicates possible achlorhydria (no stomach acid).
Don't know whether I'm logged in here or not so I hope this works.
After you've started the b12 treatment then the serum b12 test is next to useless because any b12 you put into your body will raise the levels in your blood stream - this doesn't mean it's getting through to cellular level though. The other problem with the serum b12 test is that it measures haptocorrin and holotranscobalamin ie TOTAL b12. Yet haptocorrin does nothing to regenerate nerves and cells.
Once you have been diagnosed with b12 deficiency that is proven not to be due to dietary deficiency then you should be on b12 for life.
If a doctor puts you on folate and you have a b12 deficiency then that can mask the haematological indicators of b12 deficiency and let the damage proceed unnoticed.
There is, quite possibly, no way of establishing what damage has been done through lack of b12 if your treatment has been going on for over 9 months, because the treatment masks anything that would be shown on an MRI. The only thing I have been able to find that possibly could show up the damage is an SEP tib.
Since b12 deficiency causes degeneration to the nerves and cells then it can cause ANY symptoms. Cognitive as well as physical. Your symptoms are typical of it.
I'm sorry to say that if your deficiency has gone on for any length of time studies show that although many symptoms will improve, many will remain.
While I'm here...
Vit d deficiency (as well as iron, calcium and a few others) can be caused by low stomach acid (hypochlorhydria).
In the UK one lab does the test but I don't know about elsewhere in the world. Here it is called the Salivary VEGF - you can Google it and find the lab. Maybe they would be able to identify somewhere in your own country that does it?
If you do have problems converting d3 and absorbing calcium, taking more in without resolving the issue at source can cause more problems because it goes into your bloodstream. Excessive calcium in the bloodstream can cause problems.
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