Is it PA?

[Frank77]

I wonder if someone could give me some advice - I am new to this site? I think I have PA but have not yet been diagnosed. My symptoms started 6 months ago: brain fog, balance problems and then chest pains. I had no idea what was going on and did nothing about it until December 2017. Then, after researching the internet, I came across PA. I did not go to a doctor but bought vitamin B12 supplements from a local pharmacy - the biggest dose they could supply which was Solgar sublingual drops. Trying to emulate a case study I found on internet I took 2000mg a day for one month, then reduced to 1000 mg a day. After about 3 weeks I noticed a distinct improvement with most symptoms effectively disappearing. However about one week after reducing to 1000 mg a day the symptoms began to return. 4 days later I had all the old symptoms including chest pain. I immediately re-started the 2000 mg a day routine and also bought some NOW 5000mcg lozenges which I take about 3 times a day. Today - 5 days after return of symptoms - chest pain is gone but brain fog still bad and still have balance problem. But none of the other symptoms I have read about on this site - tingling hands etc. My questions to you, based on the above history, are:

1) what sort of dose of B12 should I be on now?

2) Do you think I need the injections? I am now in Moscow and do not know if i can get these here.

3) I have read on your site that these neurological symptoms (that i appear to have) occur after other symptoms - that i don't recall ever having. I think someone wrote that these symptoms can be 'irreversible', which is rather worrying. What is your view?

I would add that I have just turned 60. Tomorrow I am seeing a gastroenterologist to discuss all of this, test for B12 and low stomach acid, which may be part of the problem. If you have any advice for me before this meeting with doctor I would be most grateful to hear it. best wishes Frank77

[clivealive Forum Support]

Hi Frank77 IF you have Pernicious Anaemia or a Vitamin B12 and/or Folate deficiency your having taken supplements will "skew" the blood test results so it's best to tell your doctor what you have been doing.

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 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.

Apart from your age 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

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

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

[Frank77 in reply to clivealive]

many thanks... will tell the gastro doctor about my supplements and try to get a folate test.

[Frank77 in reply to clivealive]

Hello Clivealive. Just thought I would update you on my visits to 2 doctors here in Moscow. The gastroenterologist knew very little about B12, though she had heard of PA. Her reaction on hearing my symptoms was to refer me to a neurologist. I knew this was almost pointless, but agreed as at least it might rule out certain causes. Meanwhile she ordered 3 tests: B12, Folate and stomach acid. I have 2 results so far - stomach acid will be tomorrow.

B12 2132 (160 - 800)

Folate 40.1 (3-17)

I have been taking sublingual drops for weeks (2000 mcg a day) so not sure if these results can help very much. The doctor had never heard of intrinsic factor so not quite sure what i can do to get tested for that. Then I saw the neurologist. He didn't want to hear about my theories on B12: told me that I should never believe what I see on the internet. He really didn't know anything about B12. His only comment on it was that too much b12 "can give you cancer"! I decided not to waste time arguing with him... His theory about my brain fog, balance problems etc is that it is all down to fatigue caused by poor sleep patterns. He prescribed sleeping pills and something called "Tserepro" (in Russian) which is supposed to improve cognitive abilities. I haven't yet bought any of these.

Meanwhile I have had my first bout of acid reflux (last night) though I read on this site that it is a common symptom of PA?

So not quite sure where to go from here. Will continue to take the sublingual drops and lozenges. I feel somewhat better than a week ago but still not quite normal.

All the best Frank77

[clivealive Forum Support]

The sublingual B12 you have been taking will as you say definitely have "skewed" the test result but if you are beginning to feel a benefit from taking them then continue to do so.

The B12/cancer scare is really only of concern if you already have cancer cells - the B12 may well "help them grow" but the taking of the B12 in itself does not cause cancer.

I had two thirds of my stomach removed at the age of 17 in 1959 which on the one hand in itself increases my risk of developing stomach cancer whereas on the other hand I have been having B12 injections every month for 46 years and I'm still "clivealive" and over 75.

I don't think that acid reflux causes P.A. but rather it is an indication that you may have low acid levels. High acid levels are essential to "grab" the B12 from our food.

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.

(Martyn Hooper "What you need to know about Pernicious Anaemia & Vitamin B12 Deficiency)

Are you taking anything for the acid reflux, proton pump inhibitors (PPI) or antacids. Both will affect absorption of Vitamin B12 by lowering the acid level. You may find a benefit from adding a few drops of lime juice to a glass of water.

Persevere with the B12 supplement and see how it goes.

[Frank77]

Many thanks for that most detailed comment. I do not take anything for acid reflux, as it only appeared yesterday for the first time and I suppose it may have nothing to do with B12... But since this may be the cause of my B12 problem I have decided to start taking a tablespoon of apple cider vinegar in a glass of water every day before supper. I have read about this cider vinegar in other contexts and it really does seem to have certain benefits. So, if I understand the situation correctly: low stomach acid causing B12 deficiency is not PA? Is there any way of confirming one way or the other what the cause is?

[Frank77]

Hello again. Just thought I would post an update on my own situation as I still have a problem and more questions. It may also help someone else out there!

Without repeating my own story in any detail: about 7 months ago I started showing symptoms such as brain fog, loss of balance, fatigue, chest pains, minor speech problems. But none of the other physical problems I have read about on this site such as tingling hands/feet etc. Started taking sublingual drops of B12 in mid January only (SOLGAR, 2000mg a day). Within a couple of weeks I felt much better, and a week or so later I think all symptoms had gone. I then reduced daily B12 to 1000mg a day. About 2 weeks ago symptoms started to return so I went back on the the higher dose. Unfortunately I still have the fog, balance problems and now daily headaches. I have seen several doctors here in Moscow, including 2 gastroenterologists and a neurologist. None of them know anything about B12 deficiency and didn't want to hear my opinions, based largely on what I have read on this site. I couldn't have a Intrinsic Factor test as they had never heard of it. I asked for a stomach test - to check for low acid. They did a test but I then discovered it had nothing to do with acid - it checked for about 8 other common stomach problems. Only interesting finding was that my stomach contains a bacterium called Helicobacter pylori IgG, though it is now 'in remission' (not active). In the absence of any scientific test for low acid I conducted my own test at home: a quarter teaspoonful of baking soda in water, then waiting for burping - which should occur in a couple of minutes if acid level is normal. I waited for over 5 minutes but no burping at all.

My questions therefore are these: in the absence of an intrinsic factor test is there any other way of establishing if one has PA?

I am now back on 2000mg a day of sublingual B12 but still symptoms of brain fog etc. Is it possible that the sublingual has just stopped working or is less effective? The one bit of really good news for me is that the chest pains went shortly after starting the B12 and have never come back. Is it possible that the sublingual B12 helps up to a point but is not the complete answer?

Is it worth trying injecting with B12 as an experiment - even without having the intrinsic factor test? If low stomach acid is the problem - is this also considered PA?

Is it possible that my symptoms suggest some other problem, unrelated to PA?

Many thanks to all the knowledgeable people on this site for all your help!