Newbie with questions: Hi - newbie here... - Pernicious Anaemi...

Pernicious Anaemia Society

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Newbie with questions

Chrissy41678 profile image
10 Replies

Hi - newbie here. My doc ran blood work but did not check for B12 specifically but my results are as follows -

Hemoglobin 15.7 (11.8-14.8 g d/l)

Hemocrit 44.7 (35.5- 44.0%)

MCV 92.8 (82.0-99.0 fL)

MCH 32.5 (27.8- 34.5 pg)

MCHC 35 (32.5-35.5 g/dl)

RBC 4.82 (3.90-4.90 10 6/ul)

Also last year I saw a naturopath for an unrelated condition and they did a blood smear and I have a definitive Rouleaux formation as well as Erythrocyte aggregation I questioned what would cause that and they said, “Oh, you’re probably just dehydrated”

I started having neurological symptoms like numbness, tingling and facial twitching and started taking 5000 mcg sublingual B12 and after a month it “seems” to be helping but I’m afraid it may just be masking something worse.

Do the results of the CBC sound like pernicious anemia? Should I push for B12 testing? Pay out of pocket and have it done myself? If so, what specific tests should I have done?

Please help. At my wits end with all this.

Thanks.

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clivealive profile image
clivealiveForum Support

Hi Chrissy41678 the following has previously been posted on this community.

"Taking supplements that contain B12 will affect any tests ordered by your doctor to assess your B12 status. You should not take any supplement with B12 before having your B12 assessed (including MMA/homocysteine/Active B12). For testing intrinsic factor antibodies: keep one week between an injection and the test".

How long ago did you stop taking the B12 sunlinguals?

You will also need to have your Folate level tested as the two help your iron to function properly and to make red blood cells.

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

I am not a medically trained person so cannot comment on your test readings, but have had P.A. (a form of B12 deficiency) for 46 years

Gambit62 profile image
Gambit62Administrator

The results above don't actually show anything that would point to B12 deficiency - but that doesn't mean that B12 deficiency isn't involved.

As clivealive says supplementing is going to have an affect on future tests and make it much more difficult to interpret them - particularly with the doses you have been taking.

Dehydration can affect some blood results.

There are a large number of conditions that can cause the symptoms you mention. Have you asked for a referal to a neurologist?

Chrissy41678 profile image
Chrissy41678 in reply toGambit62

Thank you both. Yes, neurologist has been ordered but I won’t be seen until April which is the first available appointment. Was trying to figure this out on my own and hoping it was something simple.

All I know is I feel better taking this dose of B12. It’s scary thinking of stopping it again to be tested and having all the symptoms flood back in.

Thanks again.

Gambit62 profile image
Gambit62Administrator in reply toChrissy41678

suggest that you discuss with your GP. Serum B12 isn't really the best test in the world for B12 deficiency.

Do you know why your GP only did fbc and didn't look at other conditions such as B12, folate, vitamin D, iron, thyroid, diabetes?

Chrissy41678 profile image
Chrissy41678 in reply toGambit62

No idea. I told him what was going on, he ran blood work and he said everything came back “normal”. I noticed the slightly elevated levels of Hemocrit and Hemoglobin and started doing some digging around online and was hopeful it was perhaps related to pernicious anemia because of how my supplementation for the last month relieved my symptoms. Just trying to put two and two together since my GP isn’t a lot of help.

Gambit62 profile image
Gambit62Administrator in reply toChrissy41678

unfortunately the results may be up in the normal range but they are in the normal range so unlikely to be seen as significant.

The problem though is that the ranges are set using averages and averages don't necessarily give an accurate position when they are applied back to an individual.

Chrissy41678 profile image
Chrissy41678 in reply toGambit62

Would a week without any supplemetation at all still skew a homocysteine or MMA urine test? My understanding is they could still be high, yes?

Gambit62 profile image
Gambit62Administrator in reply toChrissy41678

a week without supplementation may be enough to get a decent reading on an IFA test (for PA as a specific cause of deficiency).

For all other tests its recommended that you refrain from supplementing for between 3-6 weeks.

Chrissy41678 profile image
Chrissy41678 in reply toGambit62

Thank you very much. I appreciate all the help.

Wowo23 profile image
Wowo23

Hi Chrissy41678. Sry you are going thru this. Not knowing for sure what's going on is the worst. You couldn't be in better hands than Gambit62 and Clive alive. I can only tell you my personal experience. My MCV is always elevated and rbc always low or on low end. I would still be really sick if it wasn't for my oncologist who happened to check my b12. It was very low. My primary took over and checked my instrnic factor and checked for the MTHFR gene mutation. Instrnic factor was very high and bloodwork showed gene mutation. Problem remains there are so many uneducated docs regarding PA and b12 defincency. It took years for someone to find this problem and then months to gather all info and take proper bloowork to get a diagnoses. I would ask for the proper testing and go from there. Including thyroid. I would ask for instrinic factor, b12, folic acid and MTHFR gene. I would refrain from supplements until testing to get accurate levels. Best of luck and plz keep the group posted

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