I'll try to keep this as condensed as I can since it is a bit of a long story. About 2-3 months ago I started having really bad palpitations and shortness of breath. I was basically trying to catch my breath all day long; also extremely fatigued, I started getting 10+ hours of sleep where I could normally get by on 6-7 hours before it all started. I also started having strange digestive issues, including chronic diarrhea. This went on for 3 days until I ended up going to the ER because I thought I was having a heart attack. After a chest x-ray, ekg, and blood work they said my heart was healthy. I went to my PCP where she ran various tests for pancreas function, H. Pylori, kidney function, liver function. All of that came back fine. Long story short she also checked my b12. It came back at 198, which according to her is low but not extremely low. In lieu of injections she put me on an oral 500mcg tablet to see if it would come up. I have been taking 1000mcg since I read that the low doses are sometimes not effective. She wanted me to come back after 6 weeks to see if my numbers have risen, which will be tomorrow. My main question is I seem to have a plethora of symptoms and was wanting to get opinions as to which ones could possibly if at all be related to all of this. Here is a list that I can think of right now:
-Painful burning/pins and needles in shoulders (this has actually been around for probably 10 years)
-Neck pain on right side only, including headaches on right side.
-Sore throat, ear, and sometimes lower jaw; only on right side
-Sometimes after eating I feel really bad, all I want to do is lay down.
-Feet hurt all the time, burning pain
-Random muscle pains.
-Lethargy
-Palpitations
-Easily winded compared to before all this started.
-Cough
-Not sleeping very well
-Hands have strange sensations
-Pains around my stomach
-Mood swings( I seem to always be down in the mornings)
-Can't seem to think straight
-Keep getting anxious since I don't really feel I am getting better (I keep having thoughts that there could be other things wrong with me such as some form of cancer or something)
Thats all I can think of right now. If my numbers come up from the oral supplement should I still push for injections since I am still having strange symptoms? Thanks for all the help, this has been a strange couple of months; I have never felt this bad in my life before. Also, I am 31 years old if that helps.
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Abnormal yellow colouration of the skin (jaundice)
Heightened sensitivity to hearing, smell, and taste
Vision distortion, e.g. seeing stars, or double vision
Breathlessness
Headache
Cankers (ulcers) in the mouth
Sleep disorders
Intolerance to loud sounds, flashing lights
Intolerance to crowded malls (needing personal space)
Tinnitus – ringing in ears
1.2 Neurological Symptoms
The neurological symptoms of vitamin B12 deficiency may include:
Numbness and tingling of the arms and more commonly the legs
Difficulty walking
Loss of balance
Hands feel gloved with loss of sensitivity
Loss of vibration sense, having to look down to see where you are walking
Unable to close your eyes and stand on one foot
Night vision
Memory loss
Disorientation
Dementia
Extreme mood changes
Short term memory loss
Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.
1.3 Gastrointestinal Symptoms
The gastrointestinal symptoms of vitamin B12 deficiency may include:
A sore tongue
Appetite loss
Diarrhoea and/or constipation
Stomach pain
Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels were probably "bumping along the bottom" of the (unknown) range
.
Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:
Vegetarians, vegans and people eating macrobiotic diets.
People aged sixty and over
People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).
People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications, or infections such as h-pylori that can interfere with B12 absorption.
People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.
People with a history of eating disorders (anorexia or bulimia).
People with a history of alcoholism.
People with a family history of pernicious anaemia.
People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).
People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients.
People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.
Can you see yourself among any of the above people?
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
Wow, thanks for all of that information; not sure where to start my reply. I don't think I fall into any high risk groups for B12 deficiency other than I was told a long time ago I had IBS due to irregular BM's. Here are the results from my blood related to iron, folate, and B12 that was taken back in the beginning of October with the "normal" range in parenthesis:
Iron Bind. Cap - 285 (250-450 ug/dL)
UIBC - 235 (111-343 ug/dL)
Iron Serum - 50 (38-169 ug/dL)
Iron Saturation - 18 (15-55%)
Ferritin Serum - 104 (30-400 ng/mL)
Vitamin B12 - 198 (232-1245 pg/mL)
Folate Serum - 10.3 (>3.0 ng/mL)
I asked my PCP about the iron being on the low end, she said I could take a supplement every other day so I have been doing that as well. I went today and had my blood drawn so hopefully in a couple of days I will have some updated results. If my B12 levels have come up should I still push for the injections or should I look elsewhere? Also, would it be worthwhile to ask to have MMA and homocysteine levels looked at? Finally, it seems that I can't look at the link provided above unless I am in Great Britain and I reside in the US. Is there any other way for me to access that document?
Ah - I did wonder if you were not in the U.K. when you mentioned your PCP - not a term we use over here.
I'm sorry you cannot open the link to the Guidelines for "Treatment for B12 deficiency" but maybe you could Google that and pull up the U.S. protocols as they differ from those over here.
A wiser person than I has previously written:
Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same.
The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.
So, if the oral supplements you are taking work for you then it's not an absorption problem.
You could ask for an MMA test.
Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.
The uMMA test measures the amount of MMA in the urine or blood. Elevated levels of MMA indicate B12 deficiency. MMA is 40 times more concentrated in the urine than the blood, and the urinary MMA (uMMA) is the preferred test over the serum MMA.
Please remember I am not a medically trained person.
Ok thanks again. My PCP called this morning, my iron levels are good and my B12 is now 650, so I guess there is something else going on with me. Thanks for all the help though.
Improvement after treatment starts is not an "overnight" thing; in fact it is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts to repair the damage caused by the deficiency.
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