Help..

[Beth1982]

How is PAS diagnosed? I've been sick for a while... Odd symptoms. Doctors keep telling me it's just amxiety. Thanks

[Secondchance]

Very difficult to get diagnosis nowadays as no Schilling test any more. PA is one of many causes of B12 deficiency which can all lead to same symptoms.

First step is checking B12 and folate level. They need each other to work.

If B12 is under 200, then guidelines recommend treatment trial if symptoms present. Methylmalonic acid and homocysteine can help confirm a borderline test but are rarely done as very specialist tests. Some people arrange private tests but pointless after starting treatment.

Checking intrinsic factor and gastric parietal antibodies is next step.

If IF positive pretty certain it is PA, might be if GPC antibody positive.

All tests are pretty rubbish so guidelines recommend treatment based on symptoms. IF antibody test is only positive in 50% of true cases so misses half of people.

Google bcsh guidelines b12 deficiency for more information.

Your doctor says 'just anxiety' . This can be a symptom.

Sorry you are feeling bad. Get your test results and post them here for help and support.

[Ladyawkward in reply to Secondchance]

My b12 is always on the high end.. go figure huh? Guess you can hve a lot on a test but none is being absorbed

[clivealive Forum Support]

Hi Beth1982 welcome to this community. I see you've posted many questions on an anxiety support forum and appear to be suffering some of the symptoms associated with Vitamin B12 Deficiency and P.A.

As Secondchance has said your first step is to get your doctor to check your serum B12 and Folate (B9) levels.

I am not a medically qualified person but in the meantime here is a list of B12 Deficiency and P.A. Symptoms for you to check your own against:-

1.1 General Symptoms

The following general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 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

I noticed you asked a question on the other forum about diabetes. If you are diabetic and on Metformin this is known to affect absorption of B12.

On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. 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.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

I’ve also read elsewhere that stress can have a depleting effect on B12 levels.

If you can "identify" yourself in any of the above then make a note of it and present it to your doctor when you get the test results as sadly doctors tend only to read the numbers on their computer screens rather than look at the patients.

Take things one step at a time, try not to worry too much, come back here with the results as secondchance suggested and I wish you well.

[Gambit62 Administrator]

Hi Beth, good to see that you decided to join the forum.

As Secondchance and clivealive say getting a diagnosis is tricky - the symptoms are very varied and GPs are unfortunately trained to look at symptoms not the whole pickture. I suffered 40+ years of anxiety and depression before being told in hospital that my B12 was low following a fall at home in which I broke my ankle. It then took me another 15 months to figure out what low B12 meant and figure out how I needed to treat it - B12 is a fascinating subject with so many nuances but most medics are just totally unaware of it as it is a vitamin that causes a lot of symptoms but, as I said earlier, they are focused on treating symptoms.

I didn't think that my anxiety and depression could be anything to do with the B12 until both disappeared 3 months after I started more or less treating myself.

To understand how it is diagnosed I think it is useful to understand a bit about how B12 deficiency works as it is likely that you are going to have to educate your GP and dispel a number of myths.

The first line test for B12 deficiency is a blood test called serum B12. However, B12 isn't a blood disorder. One symptom of B12 is macrocytosis (enlarged and deformed red bloodcells) but this isn't caused by a lack of B12 in the blood it is caused by B12 not being available to regulate cell reproduction at the cellular level in your bone marrow where blood cells are produced.

I mention this because a lot of medics are totally confused - not helped by guidelines which list B12 deficiency under blood disorders but nowhere else in the UK - and also by the use of the term pernicious anaemia - one possible absorption problem that will lead to a B12 deficiency but is often used interchangeably as a term for B12 deficiency (in the same way that alzheimer's gets used as a way of saying dementia). They think that anaemia is a necessary characteristic of B12 deficiency and it is the anaemia that causes the symptoms so if you don't have anaemia they conclude either that they have caught the deficiency early or that you don't have a B12 deficiency at all ...

going to save this now as I think it is going to be a very long response

As I said above I had symptoms of PA for over 40 years - anxiety and depression that started when I was 10, followed by pins and needles that started when I was in my 20s ... and in my late 40s I was having problems with balance and a whole load of other symptoms ... and I have never shown any signs of anaemia.

The anaemia can also be masked if you have good folate levels ... and as a lover of fruit and veg I have always eaten a lot of fruit and veg!

So, general test is Serum B12. Problems with this test are

a) it looks at levels in blood (and its what is going on with B12 at the cell level that causes a deficiency - not the levels getting through to cells)

b) it looks at all forms of B12 - not just the two forms (methyl and adenosyl) that are actually used by cells for the processes that produce new cells, make energy available to cells, and maintain the lining around nerve cells. There is another test - not generally available on the NHS - that looks at the active forms of B12, so is a bit better but even that isn't telling you what is happening at the cell level.

Going to save again

So, lets look a bit at what is going on at the cell level

- obviously one thing that is going to affect how much is available to cells is the amount of B12 going in to your body - which could be low because you don't have B12 in your diet - only found in animal products - or could be because you have an absorption problem such as PA, low stomach acidity (often mistaken for high stomach acidity and treated with PPIs) or various drug interactions

However, even if you have plenty of B12 in your blood it still needs to get to your cells and there are a number of things that can go wrong there

a) problems converting B12 into the active forms of B12 - called methylation - number of genetic variants that can cause this in differing degrees - it tends to affect processing folate/folic acid more so can show up in odd folate levels in the blood - generally high folate levels)

b) not enough of other vitamins and minterals that are needed so you can process and use B12 fully - most noticeably folate - so if your folate levels are low that needs to be treated ... and if both folate and B12 are low both need to be treated at the same time.

c) functional deficiency - this happens where B12 levels in serum are high and, like PA is an auto-immune problem - the body creates a protein that binds to the B12 and stops it being available to cells. There are a few conditions - particularly ones affecting the liver and kidneys - that can lead to high levels of B12 in your blood and kick of the response but the most likely reason for the problem is actually being treated for a B12 deficiency. It is extremely unlikely that this is a factor at the moment but it is something that you may need to battle your GP over if you start treatment. The way to treat it isn't to reduce the amount of B12 but to add so much B12 to the blood that the body can't create enough protein to bind it all so enough manages to get through, so the battle is about getting the amount of B12 you need in the face of a tendency to treat B12 on the numbers coming out of the B12 serum test.

Saving again

Diagnosing B12 deficiency

So B12 serum test not really a good guide. Symptoms are just as, if not more, important. B12 serum is one part of confirming the diagnosis. You can find a check list of symptoms of B12 deficiency here

pernicious-anaemia-society....

If your GP tells you that the results were normal range - don't just dismiss it - fight back with the following information on just how dangerous it is to just go on ranges:

ukneqas-haematinics.org.uk/...

and also the summary of the BCSH guidelines, which talk about treating urgently if neuro symptoms are present even if results are normal as significant numbers of people have a clinical deficiency even if numbers say normal - that's because people vary a lot in the way they respond to B12 but the ranges are based on averages.

bcshguidelines.com/document...

you may also want to be armed with the different treatment protocols appearing on p9

There are two waste products that the body can't recycle to usable building blocks if your cells don't have enough B12 - MMA and homocysteine - so looking at levels of these two chemicals can help clarify if there is a B12 deficiency at the cell level even though B12 in blood is 'normal range'. There are other things that can cause both to be raised so they aren't used as first line tests - but can clarify if ambiguity.

Saving again

And finally a word about how the body is normally very efficient at extracting and using B12 from food. The body stores large amounts of B12 in the liver and releases it into the ileum in bile as it is needed. Most B12 is absorbed in the ileum (99%) and the process is very efficient but it is delicate so if something goes wrong there - and that's where it tends to go wrong - you aren't going to be able to absorb B12 from your food efficiently and, more significantly, you aren't going to be able to recycle it. Your body will be releasing its stores but very little of the stores are going to be reabsorbed into the blood - and most will just pass out through the gut.

Malabsorption isn't the same as non-absorption so some may get reabsorbed but slowly over time as things get worse in the ileum, the bucket leaks more and more until eventually it leaks away faster than the stores are repleated and at that point your symptoms start to go through the roof. It can take years and even decades for a full blown deficiency to develop - as was the case for me.

Hope that this gives you enough to be prepared to lead your GP through discovering more about B12 - but also hoping that they are one of the good guys whose already developed an interest and some knowledge of the subject.

[Gambit62 Administrator in reply to Gambit62]

Think I've finished now - for anyone that read up to a point where I'd saved

[fbirder in reply to Gambit62]

a) it looks at levels in blood (and its what is going on with B12 at the cell level that causes a deficiency - not the levels getting through to cells)

But, for the vast majority of people, the levels in the blood determine how much gets into the cells. After all, if there's none in the blood then there's not going to be any in the cells.

Those who have high blood levels of B12 and high blood levels of MMA and/or homocysteine (indicative of a problem getting B12 into the cell - a functional deficiency) are few and far between.

And the most common cause of a functional deficiency isn't antibodies binding to B12 (there are, IIRC, just two cases in the whole of the literature). Instead it's thought to be insufficient amounts of correctly functioning transporter protein - TC2. It is this that is tested for in an Active B12 (holotranscobalamin) test.

And the biggest problem is that the B12 blood test gives falsely high levels in people with circulating antibodies to IF. And it just so happens that most people with PA have high levels of that antibody. So having the disease that's being tested causes errors in the test.

[Beth1982 in reply to Gambit62]

The nurse called yesterday and reported... B12 within normal range, vitamin d and calcium low ( consider a supplement) iron a little low, wbc and platletts a little low... That's all I got! The B12 was 216

[Gambit62 Administrator in reply to Beth1982]

well done on getting the actual number for the B12 - at 216 you could definitely be feeling the effects of a B12 deficiency - suggest that you take a list of symptoms and the UKNEQAS and BCSH guidelines and make an appointment with the GP.

It is true that Vit D being low can cause similar problems - but also true that VIT D being low could be another indicator of an absorption problem. Same true of the calcium being low.

White blood cells likely to be high because of the ear infection ... and the platelets being low could be B12.

Lots of infections (ie low immune system) is a symptom of a B12 deficiency.

[Beth1982 in reply to Gambit62]

Thank you!

[Frodo]

It might be diagnosed by ruling out other things with the same symptoms, but if you have already been diagnosed with 'anxiety' it can be difficult to gain access to more tests or persuade the GP to consider other possibilities. And as people have said, anxiety and depression can be symptoms of B12 deficiency, which GPs don't tend to recognise.

One of the B12 sites (not sure which) has a checklist of symptoms you can print off and fill in to show to your GP which sometimes helps.

[Polaris]

Hello Beth. Good advice from everyone above and I cannot add anything, except to wonder about all the medications for heart, diabetes, etc, most likely having depleted your B12.

Having been prescribed various medications myself for heart and scarily high BP after a trip to A & E, I discovered that the resulting high anxiety and panic attacks were caused by Amiodipine medication. I refused to continue Amiodipine and asked for Losartan but the GP insisted I stay on it and then orescribed both!

I'm now taking magnesium mineral salts (high dose magnesium IV used to be the treatment for very high BP) as well as Jarrows methylcobalamin 5000 mcg, sublingually - hopefully lowering homocysteine and therefore prevention of stroke. I have gradually weaned myself off Amiodipine. I now take half a tablet of Losartan after carefully monitoring my own BP daily - my BP is down and the anxiety attacks have gone,

I'm not a doctor or suggesting you come off your medications but it might be worth trying a different medication for the heart problems if that's possible?

[Polaris]

PS. I'd recommend 'Invisible Minerals - Magnesium', written by Dr Carolyn Dean, in which she points out that most of us are deficient and that heart medications actually deplete magnesium, which is also needed for metabolising potassium. It all seems to be a fine balance!

Also the following links:

b12deficiency.info/b12-writ.... (signs and symptoms, templates and an excellent film)

cmim.org/pdf2014/funcion.ph...

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

*It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

[fbirder]

I'd recommend 'Invisible Minerals - Magnesium', written by Dr Carolyn Dean

Wow! Apparently magnesium deficiency is responsible for almost every health problem under the sun -

Anxiety, asthma, blood clots, bowel disease, cystitis, depression, detoxification, diabetes, fatigue, heart disease, hypertension, hypoglycemia, insomnia, kidney disease, liver disease, migraine, musculoskeletal conditions, obstetrics and gynecology, osteoporosis, Raynaud's syndrome and tooth decay are all triggered or caused by magnesium deficiency.

Unfortunately only one reference is given, and that is to her own book!!

If the writers of House MD had known all this then it would have been a boring TV programme - "What's today's patient got?" "Magnesium deficiency" "What, again?!"

The site is full of adverts, including Dr Dean's 104 module wellness program. No credit card required (for the first 4 modules).

Indeed, it satisfies all the criteria for the fbirder gold award for quackery.

[Polaris in reply to fbirder]

I'm beginning to think you set out to deliberately provoke FB, so will ignore😴

[fbirder in reply to Polaris]

I'm sorry if you find the facts upsetting.

[Polaris in reply to Polaris]

Extract from another link Beth with plenty of references:

ancient-minerals.com/magnes...

"Do you take a diuretic, heart medication, asthma medication, birth control pills or estrogen replacement therapy?

The effects of certain drugs have been shown to reduce magnesium levels in the body by increasing magnesium loss through excretion by the kidneys.

For a complete list of the specific drugs which can affect magnesium levels, read our article, Causes of a Lack of Magnesium."

"Older adults are particularly vulnerable to low magnesium status. It has been shown that aging, stress and disease all contribute to increasing magnesium needs, yet most older adults actually take in less magnesium from food sources than when they were younger.

In addition, magnesium metabolism may be less efficient as we grow older, as changes the GI tract and kidneys contribute to older adults absorbing less and retaining less magnesium.15

If you are above 55 and also showing lifestyle signs or symptoms related to low magnesium, it’s particularly important that you work to improve your magnesium intake. When body stores of magnesium run low, risks of overt hypomagnesaemia (magnesium deficiency) increase significantly."

[Sleepybunny]

Hi,

I wondered if you had been checked for Coeliac disease and Thyroid problems? They have symptoms that can overlap with those of B12 deficiency.

coeliac.org.uk/coeliac-dise...

thyroiduk.org.uk/tuk/