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Pernicious Anaemia Society
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Do I have B12D or PA?? Please help...

Hello,

I am looking for any thoughts, suggestions, advice, or opinions you may have on the following. Please bare with me if this doesn't flow well, as my brain is not functionin properly.

A brief history, I am a 40 yr old woman who has been diagnosed with depression, anxiety, high blood pressure, sleep apnea, and insomnia. I was 1st diagnosed in 2011 with depression and anxiety, but always felt there was something else causing me to suffer. I tried numerous antidepressants over the last few years with little to no relief of my symptoms. As a matter of fact they have now gotten very severe over the last 5 months.

My current symptoms are:

Memory loss

Poor concentration

Confusion

Disorganized thinking

Feel like I'm in a constant fog

Mind feels blank

Reading and spelling problems

Verbal recall issues (hard time remembering words)

Blurry vision/Light sensitivity/Dry eyes

Hand and eye coordination off

Feel dizzy and off balance

Feel drunk/intoxicated

Feel like I'm in a dream/things seem strange even though they shouldn't

Numbness, tingling, and pins and needles feeling in hands and feet

Insomnia 3-4 hours of sleep per night so

Always tired no energy

Cold feet

Crave ice

And others, but I can't recall them at this time.

Over the last 5 months I have seen my primary care provider, neurologist, rhematologist, psychiatrist, and a cardiologist all who think that my symptoms are related to my depression, anxiety, sleep apnea, and insomnia.

I also had numerous blood tests including:

CHOLESTEROL, TOTAL, HDL CHOLESTEROL, TRIGLYCERIDES, LDL-CHOLESTEROL, CHOL/HDLC RATIO, NON HDL CHOLESTEROL, COMPREHENSIVE METABOLIC PANEL, HEPATIC FUNCTION PANEL, CBC (INCLUDES DIFF/PLT), HCG, QL, URINE, HEMOGLOBIN A1c, TSH, THYROID PANEL

VITAMIN B12/FOLATE, SERUM PANEL, METHYLMALONIC ACID, GC/MS/MS, HOMOCYSTEINE

RHEUMATOID FACTOR, CYCLIC CITRULLINATED PEPTIDE (CCP) AB (IGG), INTERPRETATION, URINALYSIS, REFLEX, RIBOSOMAL P ANTIBODY, DNA (DS) ANTIBODY, C-REACTIVE PROTEIN, SJOGREN'S ANTIBODIES (SS-A,SS-B), COMPLEMENT COMPONENT C3C, COMPLEMENT COMPONENT C4C, COMPLEMENT, TOTAL (CH50)

COMPREHENSIVE METABOLIC PANEL, SED RATE BY MODIFIED WESTERGREN, CBC (INCLUDES DIFF/PLT), ANA IFA SCREEN W/REFL TO TITER AND PATTERN, IFA, ANTINUCLEAR ANTIBODIES TITER AND PATTERN, ANCA SCREEN WITH REFLEX TO TITER, MYELOPEROXIDASE ANTIBODY, PROTEINASE-3 ANTIBODY, CREATINE KINASE, TOTAL, T4 (THYROXINE), TOTAL, TSH, VITAMIN B12, HIV 1/2 ANTIGEN/ANTIBODY, FOURTH GENERATION W/RFL, METALS/METALLOIDS PANEL 1 SERUM/PLASMA, GLUTAMIC ACID DECARBOXYLASE 65 AB, IA-2 ANTIBODY, INSULIN AUTOANTIBODY

All tests came back with normal ranges except B12 came back 419, just 4 months ago it was 595.

MMA 819

Folate 9.9

Homeocystine 10.2

Urea 6

Hemoglobin 11.5

RDW 16.9

My doctor said I could treat the anemia with iron, but didn't feel any of the other results were concerning. To me it seems kind of ironic that my cognitive impairments got worse over the last few months, and that my B12 level has dropped almost 177 points.

Do my symptoms sound like I could have either B12 deficiency or PA? What can I do to persuade my doctor to treat me for the deficiency? Any links to data supporting the test results and my symptoms correlate would be greatly appreciated.

I've thought about just self treating, but I live in the US, and I think you need a prescription to get B12. Do any of you know of anything different? Or do you have suggestions on how I could self treat?

I hope this post made sense. I'm at the end of my rope, and feel very hopeless and defeated at this point. If I continue to decline at this rate I will be a complete idiot in a vegatative state by the New Year.

Thank you in advance for taking the time to read my post.

24 Replies
oldestnewest

Have you read "Could It Be B12" by Sally Pacholok? I found it helpful and informative, I think the author is from the USA. There is also a website.

b12awareness.org/

I have written some detailed posts on other threads which may be of use although aimed more at those in UK.

Good luck with finding the help you need.

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Thank you for replying. No, I haven't read that book. I will look into it.

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You could very well be gluten intolerant. I was like the walking dead with chronic fatigue until somebody told me about gluten. After 2 days on a gluten free diet, the chronic fatigue vanished. Gluten intolerance also causes depression and a zillion other maladies. Doctors are not trained to look for food intolerances. You might well be B12 deficient also. There are many B12 supplements you could try such as sublingual drops or transdermal oils. Heart palpitations are a definite symptom of food intolerances, in particular histamine intolerance. You could try keeping a food diary to see if certain foods cause the palpitations. High histamine foods are things such as fermented foods, cheese, leftovers, alcohol, chicken and fish. You could Google histamine intolerance for more info.

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Thank you for the suggestion. I have days where I don't eat anything, and the problems still exist. I don't notice any real changes in what I eat and how it affects my symptoms. But, it is something I will look further into. Thanks again!

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Hi,

I found these websites are useful. They are based in UK but will have useful info wherever you are. People contact the PAS from all over the world.

pernicious-anaemia-society.... 01656 769467

I think there is an e-mail contact and postal address on website.

b12deficiency.info/

b12d.org/

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Thank you for the links!

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As you've obviously suspected, numbness , tingling, loss of balance, confusion, weakness, etc. are neurological symptoms and, especially as your B12 has dropped in the past few months, should be investigated and treated with injections without delay. I realise you are in the US but, according to the BNF and UKNEQAS guidelines below, they should be treated with injections until no further improvement, as there is a short window of opportunity before they become irreversible. I hope this extract from the BCSH guidelines and other information detailed below will help persuade your doctor to begin treatmentas soon as possible. I have read that many doctors in the US believe that B12 tests are not covered by insurance but, in fact, they are. Not sure how true this is?

From the book, "Could it be B12" - "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

b12deficiency.info/b12-writ... (List of symptoms and an excellent film)

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

The above latest UK research document is supported by many research papers and has a useful summary if GP won't read full document. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

Also from the book, 'Could it be B12?' By Sally Pacholok & Dr J. Stuart :

"neurological symptoms can occur in isolation, so it is important to consider a diagnosis of B12 deficiency in the presence of neurological symptoms of unknown cause as neurological symptoms may progress and become irreversible."

"Tingling felt in the hands and feet can be the first sign of nerve damage due to B12 deficiency (reported by 65.7 per cent of respondents), and can lead,to numbness in any part of the sufferer's body, but is felt usually in the feet."

ukneqas-haematinics.org.uk/...

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord.

I hope this helps clarify things to enable you to get the right treatment.

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Thank you for this information. I plan on printing out all of it and taking it with me to my doctor's next week. Hopefully he will agree to start treatment NOW! Do you know how long the window is before permanent neurological damage is done to your cognitive functioning? I'm worried I have been deficient for too long and am now my brain is beyond repair!! I feel so confused and stupid all of the time! My memory is shot to hell!!

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I'm sorry but I don't think anyone can answer this but is why it's advisable to treat urgently. B12 injections are cheap, effective and you cannot overdose. The deficiency take years to manifest and symptoms can be quite subtle to start with, so five months of neurological symptoms I imagine would not have progressed to become irreversible but is why Sally Pacholok (Could it be B12?) recommends covering all bases with frequent injections and supplements. My sister made a remarkable recovery after years of deficiency so, hopefully, you will too as it won't have gone on anything like as long.

Very best wishes for a good outcome Mzdawn.

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Thank you so much Polaris!

Take care,

Dawn

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Polaris,

Do you have any recommendations for any other supplements I can add? Should I also be taking additional B12 tablets along with the injections once I begin them?

Thanks,

Dawn

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All our family take Jarrows Methylcobalamin 5000 mcg sublingually, available from Amazon, cherry flavoured and dissolve easily under tongue (good reviews for neurological symptoms). Others find oral or nasal sprays work for them or even patches. Probably wise to take a good multivitamin as well.

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Thanks.

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Craving ice is pretty specific for iron deficiency anaemia. Treating yourself with B12 will not fix this. Iron deficiency anaemia gave me all your symptoms. Have you had your ferritin level measured? Are you taking iron supplements?

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That's interesting Laura,I have had overwhelming cravings for ice for years but my iron levels have always apparently been ok, do you know if you can you get false positives (or negatives?) with iron blood tests?

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My understanding is that you can get a false negative (i.e. saying you don't have an iron deficiency when you do) if the test used is a ferritin level. Ferritin can be raised if you have inflammation from a chronic condition such as lupus or arthritis which masks the low iron.

webmd.com/a-to-z-guides/fer...

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No, I'm not currently taking supplements. I have always eaten ice, it's not so much a craving as it is something I love eating. My doctor did say I am slightly anemic, and could take iron but haven't taken it. Is there a difference between your hemoglobin and ferritin levels?

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My haemoglobin levels were low when I was anaemic but now they are normal even though I'm still iron deficient. Your ferritin level measures the iron stores in your body.

Eating ice is called pagophagia:

en.wikipedia.org/wiki/Pagop...

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Are you taking a daily multivitamin or any kind of supplements?

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No. Not at this time, but I plan on starting on the B12 injections this week if my doctor agrees to treat me for possible deficiency. I also am thinking of starting vitamin D, iron, and a good multi-vitamin. Do you have any recommendations on supplements that might help me?

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I can't advise on the specific ones but you need to monitor how you react to them.

Start keeping a logbook of symptoms and meds along with all food and drink. There is a 6 to 24 hour delay from eating something or taking a med to the symptom because the gut is involved.

As you start on injections, new symptoms may also appear. It may seem like you are getting worse because your body starts to detoxify. The log helps sort these out. The worse the deficiency, the stronger the symptoms.

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The log is a great idea! Thank you for the suggestion. I really appreciate your advice and support!! 😃

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Get your folate levels checked. Levels need to be in upper quartile of range to get the most from your b12 jabs, so take 5 mg folic acid daily. Also make sure any supplements are subliminal. B12 tablets you swallow will have no effect. Good luck

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You can order B12 online from Canada. It is cyano just like here in the USA but is made by sandoz which I think is French. You want 1000 mcg/ml strength. I got the 1 ml ampoules which break open and you have you use up in one injection. A pack of 10 and 10 needles was around $50.

If you get you doctor to give you a prescription ask for 1ml / week. The price with insurance is cheaper than online.

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