I hope you guys can help. I have been having steadily worsening symptoms for about four years which include: numbness in feet, tingling in feet, balance disturbances and drunken gait, extreme tiredness, diarrhea. I feel I have been fobbed off for years with talk of slipped discs (no pain in back) and a lack of interest. Eventually last week I was scheduled for an MRI scan - results pending.
At the same time, my GP tested me for vitamin B12 levels. I had a call back to say that these were very low and I have just had a test for intrinsic factor. I have been told that my vitamin B12 levels were at 129.
Obviously I have been reading like crazy since then, and it does seem to me that all my symptoms could be caused by vitamin B12 deficiency, and particularly pernicious anaemia. I am 49 and eat a good diet, rich in eggs/meat etc.
I feel I need to fight my corner on this one, but the GPs have been so hopeless I want to be prepared. So, I guess i'm asking for any help with this. Thank you so much in advance!
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), 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.
Women with a history of infertility or multiple miscarriages.
You have ruled out diet but can you "see yourself" among any of the other people?
Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:
Weakness and fatigue
Light-headedness and dizziness
Palpitations and rapid heartbeat
Shortness of breath
A sore tongue that has a red, beefy appearance
Nausea or poor appetite
Weight loss
Diarrhoea
Yellowish tinge to the skin and eyes
If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:
Numbness and tingling in the hands and feet
Difficulty walking
Muscle weakness
Irritability
Memory loss
Dementia
Depression
Psychosis
Sadly the Intrinsic Factor Antibodies (IFA) test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
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 are "bumping along the bottom of the range.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years and I'm still "clivealive" and over 75.
Thank you so much!!! That's really helpful. I don't fit into any of the categories you mentioned.
Is 129 a level low enough to get injections do you think? I so want to give something a go asap, to see if it relieves the tiredness and my stumbling at least.
If you test positive for Intrinsic Factor Antibodies (IFA) that will mean you do have Pernicious Anaemia and will need B12 injections for the rest of your life - but as I said above the test is not very reliable.....
In a way it is a "pity" that you cannot pinpoint a possible cause for your B12 deficiency from the list above because then you and/or your doctor may be able to remedy it or at least know why you have it; e.g. do you use an oral contraceptive? Some may affect absorption of B12.
I was 13 years between gastric surgery at the age of 17 in 1959 before I was eventually diagnosed with P.A in 1972 by which time I was a walking Zombie. I was given the option of eating raw liver three times a day or injections for life. I chose the injections...
Whatever the cause your doctor's first duty of care is to treat your symptoms and this may be by injection or sublingual tablets and he/she will also need to check your Folate level.
I assume you have an appointment to discuss treatment - please let us know how you get on.
Have you had your thyroid correctly tested as you mentioned you did not fit into the categories listed by Clive. Low B12 & Low thyroid often exist together 😊
Hi Marz, no I don't think so. I have quite distinct and worsening neurological symptoms in terms of numbness and stumbling gait; I eventually saw a neurologist who ordered an MRI scan. At the same time I went back to my GP and asked for a diabetes test - she also ordered a B12 test, and they called back to say that was really low and so I had another blood test for intrinsic factor. I might be clutching at straws, but I do think all my symptoms could be explained by long-term vitamin B12 deficiency. I feel very lost in the system just now, but this seems like something that could be explored quickly; I am desperate not to let another few months slip by because of the waiting times that we have here.
I am sure you are correct that B12 deficiency explains many of your symptoms - as I too have suffered having had my Terminal Ileum and more - removed when I was 27 due to gut TB - some 45 years ago ! My B12 was always around the 300 mark but I still suffered spinal issues ....
I have been on the Thyroid UK forum here on HU for almost 7 years where there are almost 80,000 members. Daily I read of LOW B12 being a problem. This is due to Low thyroid or Hashimotos ( auto-immune thyroid ) - being the cause of poor uptake and absorption of vitamins and minerals. As you know we need good stomach acid to enable the B12 molecules to be removed from foods in readiness for the onward journey into the duodenum. Low thyroid causes Low stomach acid ....
Again Doctors rarely understand the thyroid and fail to read the test results correctly. Within the NHS it is impossible to have ALL the correct tests - which are - TSH - FT4 - FT3 and Anti-bodies TPO & Tg. They test the TSH - Thyroid Stimulating Hormone - which is a Pituitary hormone and tells you nothing about how the thyroid is performing. Private Testing is available in the Home - maybe worth considering - and happy to share details.
I am not a Medic - but I do have Hashimotos - Crohns & B12 Deficiency.
You are legally entitled to have copies of all test results with ranges - so you can monitor your own health and more importantly check what has been missed.
Doctors often declare results are fine/normal/OK - but they are opinions and NOT results. They mean you are in range - but it is where you are in the range that is the key to wellness.
Wow it sounds like you have been through the wars! That's pretty intense.
I know it sounds crazy, but I am hoping to be diagnosed with Pernicious Anaemia so I can get the treatment without a fight. I could wait for the outcome of the MRI scan, which I *think* also shows up B12 deficiencies as being different to MS, but am struggling to understand the science.
This is all a bit new to me, and I don't understand the massive variety of 'ranges' that are referenced for the same result. Thank you for taking the time to reply, I really appreciate it.
4 minutes into the above video of the Pernicous Anaemia Conference discussing the effects of Low B12 on the brain ....
Testing Homocysteine and MMA are good tests to have which can indicate Low B12 at a cellular level. If both are high in range then it suggests Low B12 in the cells. The serum test you had for B12 contains both types of B12 - bound and unbound - so not all the measurement is available to be transported to the cells where it is needed - around 20% I have read ....
Is it only thyroid that controls the uptake and absorption at the cell level? As I require injections of b12 quite often and am now having to take iron orally. No docs can explain this issue to me. I have had my thyroid levels checked and all have come back "normal".
Am not sure what is being controlled by the thyroid in your response. When the thyroid is not working well it can affect many systems in the body - heart/brain/gut and everything in between. So absorption can be affected due to lowered metabolism/low thyroid.
Have you obtained copies of your thyroid test results ? - they are legally yours. You can then check what was tested and what was missed 😊 Low Iron/B12/Folate /Ferritin/VitD can be linked to low thyroid/Hashimotos.
Yes, that is very low and you have typical symptoms. My whole family is B12 deficient and we switched from injections to B12 5000iu sublingual lozenges, which we can order on-line. This meant we did not have to argue with doctors - such a waste of time. Good luck.
Thank you that's reassuring. Waiting to headband the results of the IF tests but looking forward to starting treatment
Test results are back at the GP, waiting for her to have a look at them, gah. The receptionist wouldn't tell me what they were until the GP has interpreted them. I've found out that my folates (??) have been tested as well as Intrinsic Factor, so fingers crossed that will give me more answers.
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