Hi just recently been diagnosed with pernicious Anaemia. Came as a bit of a surprise as I only went in for a blood test to check my iron level and then had a phone call to say I needed to go in for B12 injection. I was told that my B12 level was 101 when it should be between 140-1100.
Still finding this all a bit confusing. Has 4 of my initial injections so far. But don’t feel any different. If anything I will say I was more
Tired last week than normal.
What I want to know is what to expect I guess as my GP have not really given me any information.
Many thanks
Karen
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KarenCarr
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If you have been diagnosed with Pernicious Anaemia you will need B12 injections for the rest of your life.
However it may be that you are simply Vitamin B12 deficient which can occur for many reasons.
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, certain contraceptives 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.
Can you see yourself among any of the above 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
You don't say whether you are experiencing any of the above symptoms.
It is not uncommon for some neurological symptoms to appear to get worse before they get better as the B12 you are having injected starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.
I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.
A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.
Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.
It is also important that your Folate level is monitored as this is essential to process the B12 you are having injected.
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
Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 46 years and I'm still "clivealive" and coming up to 77 years of age.
Thank you for the reply. I have had a few of the symptoms, very larthargic, diarrhoea , pins and needles in hands memory loss difficulty remembering things walking into things!! I have always put this down to other things such as IBS, disc replacement in my neck etc
I had to take folic acid for over 18mths about three years ago, I was then put on iron (but it wasn’t called that) in November. I thought I was just tired due to my mother’s death.
I tried asking questions at the doctor but the nurse just told me to look on the net for pernicious Anaemia as that’s what I had
But I just feel as if I have more questions than answers if that makes sense
Am I waiting for this magic cure that’s never going to happen as currently 4 injections in I am starting to feel more tired than I was before the injections
I have a busy life in my late 40’s work as a teacher in a special needs school and just recently become a guardian to my niece.
So I had put my tiredness and everything else down to a very busy and sometimes stressful life
Pernicious means it is fatal - unless it is treated and sadly many doctors and nurses bandy the term around without understanding the difference between that and a Vitamin B12 deficiency caused by for example poor diet, age, gastric surgery, medications etc etc (see list above).
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.
Your level of B12 at 101 is the result of a serum B12 test which shows how much is "swirling" around in your bloodstream and says you are "deficient".
To determine whether you have Pernicious Anaemia you would have had to have been tested for "Intrinsic Factor Antibodies" (IFA).
Unfortunately the 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. You will need to ask your doctor whether this test was actually carried out.
"In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ileum..
Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ileum.
Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ileum after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.
Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia". In addition it can happen that we produce "Parietal cell Antibodies" and "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12".
Extracted from Mr Martyn Hooper's(Chairman of the P.A. Society) "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency"
As to the "magic cure" you are waiting - for I did say (in my massive ramble ) that it may take some time, a lot depending on how long and severe the deficiency has gone on and how much damage has been done to the nerve endings, There is no set time scale as we are all different.
You might like to read the N.I.C.E Guidelines which "tell the doctors" how to treat their patients with Vitamin B12/Folate deficiencies.. Click on the link, then on "Scenario: Management" and scroll down.
Hi Karen, I had similar levels to you a year ago and had the injections but didn't feel they made much difference. They also have me horrid acne. So the GP suggested I didn't carry on with them after the loading doses, and take multivits and 'see how you go'. I'm still very new to this but a year on, and especially in the last 2 weeks, I have learned so much. To start with the injections can make you feel worse but you need to stick with it. You need to make sure other things are topped up in order for the B12 to work at all. On another forum I've been recommended to take 5mg folate / folic acid daily while on loading doses, which is *12* of the usual over the counter tablets for pregnant women. (But start with 2 tablets 3x a day and build up). Also iron needs to be kept up. When you're having the B12 injections these can deplete very fast as your body uses them alongside the B12 and the B12 won't do anything for you if you're lacking either of them. I think this is what happened to me last year. I've just started loading doses again. A few hours after my first injection I started to feel human again, really felt well for about a day but about 30 hours after the injection I could feel myself going downhill fast. Waiting for my next dose tomorrow morning!
Also - look up the NICE guidelines for treating B12 and folate deficiency. Very few doctors really follow them. If you have neurological symptoms (which it sounds like you have) you need to carry on having injections every other day until symptoms stop improving. You may need to fight hard for this, and a lot of people end up buying online and self injecting when their GP won't let them have enough. It's important because without it neurological damage can become permanent.
I wish you all the best finding your way through all this.
Unfortunately many medical professions have only a very vague awareness of pernicious anaemia which is actually an auto-immune condition in which your body attacks the mechanisms that allow you to absorb B12. Because your body has quite large stores of B12 in your liver it can take years or even decades for the absorption problem to manifest as a B12 deficiency and because it is slow it is also often put down to other things.
There are other conditions that will cause absorption problems but PA is the most likely if you have a B12 deficiency. It is difficult to get a definitive diagnosis because there currently isn't a good test to confirm PA - the current test - IFA - isn't very sensitive and gives false negatives 40-60% of the time depending on the exact test method - so is a long way from ruling out PA.
The mechanism that allows you to release the stores of B12 from your liver relies upon the same mechanism as the one that allows you to absorb it from your food so once that has gone wrong you cannot access any stores that you have effectively, hence the need for injections.
A small amount of B12 is absorbed outside the ileum by 'passive absorption'- this on average amounts to about 1% of absorption so using really high dose supplements (1000mcg +) can work in some cases but it certainly doesn't work for everyone and is extremely unlikely to be effective in correcting an existing deficiency.
One common symptom of B12 deficiency is macrocytosis - a type of anaemia in which your red blood cells are larger and rounder than they should be - which makes them less efficient at picking up oxygen in your lungs and releasing it to cells that needed it. This can take several months to correct.
B12 is also used by a lot of the processes that go on in your cells - including the ones that reset neuro-transmitters, release energy in your cells, maintain the protective lining around your cells. As a result the symptoms are very far ranging. However the name 'pernicious anaemia' often leaves medics confused and thinking that everything is caused by anaemia. The name is an historic misnomer coming from the fact that the condition was first observed as an anaemia that led to madness and death about 200 years before people discovered B12 and realised that it was actually the affect of B12 deficiency.
You may find that some of Martin Hooper's books help you understand more about what is going on.
1) Recommended UK b12 treatment for b12 deficiency without neuro symptoms...
6 B12 loading jabs followed by a jab every 3 months
2) For B12 deficiency with neuro symptoms...
A b12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
My understanding is that UK patients with b12 deficiency with neuro symptoms eg tingling, pins and needles, tinnitus, tremors, memory problems, balance issues plus other possible neuro symptoms...should be on the second pattern of treatment.
You mention memory problems and pins and needles.
Which pattern of treatment is your GP planning to give you?
I suspect they are likely to put you on first pattern if you're in UK...it happens to lots of UK people with B12 deficiency with neuro symptoms on this forum.
If they are planning to put you on standard pattern eg 6 loading jabs then a jab every 3 months, I would urge you to consider joining and talking to PAS. PAS contact details below. PAS can sometimes intervene on behalf of PAS members.
The standard UK B12 treatment may not be enough for someone with B12 deficiency with neuro symptoms. It's vital in my opinion to get correct treatment or there is a risk of further deterioration including spinal damage.
UK B12 treatment info can be found in NICE CKS, BNF and BSH Cobalamin and Folate Guidelines links below. UK GPs will probably have a copy of BNF on their desk.
Useful article in PAS library section called "An Update for Medical Professionals: Diagnosis and Treatment" available to PAS members only.
Health professionals can join PAS for free as associate members. There is a section for them on PAS website. Perhaps your GP would be interested. I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".
PA is an auto-immune disease. Having an auto-immune condition may increase chances of developing another eg thyroid disease, coeliac disease etc.
Coeliac Disease
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.
May be worth putting any thyroid results on Thyroid UK forum on HU. in UK, doctors sometimes only test TSH which will not give a full picture of thyroid function.
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) that it may take some time, a lot depending on how long and severe the deficiency has gone on and how much damage has been done to the nerve endings, There is no set time scale as we are all different.
Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
seeing neurologist, advice on b12 injections welcomed…
Has anyone had insomnia from B12 injections?
