Injecting once per week but B12 level... - Pernicious Anaemi...

Pernicious Anaemia Society

32,623 members23,983 posts

Injecting once per week but B12 levels have dropped by over 50% in 7 months

HKAnne profile image
13 Replies

Hello All,

I have been self injecting once per week for almost three years. My levels were over the limit, but thanks to my neurologist, (I have neurological symptoms and need to be over medicated) my GP has been allowing this.

However, I have just received my Thyroid Ultra Vit results from Medichecks and am horrified to see that my B12 levels have dropped from >300 in March '19 to 150 in October '19.

All my other results looked good/normal.

Any ideas?

Thanks.

Anne

Written by
HKAnne profile image
HKAnne
To view profiles and participate in discussions please or .
Read more about...
13 Replies
fbirder profile image
fbirder

Units?

Ranges?

Active B12 or serum B12?

HKAnne profile image
HKAnne in reply tofbirder

Hi Fbirder,

Sorry should have said:

Units: pmol/L

Ranges: 37.5-188

Active B12

Nackapan profile image
Nackapan

Have you felt ill?

Or are you able to over do it?

Is it a serum b12 blood test?

It does seem odd as you inject once a week and have been for a few years.

Was it tested at the same lab with same references

I thought once on injections there was no need to test levels. Were you concerned or symptoms returning?

HKAnne profile image
HKAnne in reply toNackapan

Hi Nackapan,

I have been feeling a bit run down and tired, have had to go to bed mid afternoon a couple of times during the week for the last month but I also have ME so I had put it down to that. Did not imagine it could be PA, as my levels have been way over the limit for a few years

All tests have been done at Medichecks.

It is an Active B12 blood test.

I have regular tests only because it is part of the Thyroid Ultravit package, I need to keep an eye on my Folate, Ferritin and Vit D, you automatically get B12 test included.

Gambit62 profile image
Gambit62Administrator

A b12 injection will put your levels above the measurable range then the levels will fall. The difference in levels is likely to reflect when the bloods were taken in relation to injections. Both serum B12 and active B12 don't really mean much post loading shots and if you are on regular injections - unless the results are coming back low - symptoms are actually a much better guide to what is going on.

HKAnne profile image
HKAnne

Hi Gambit62

Thanks for your reply, I understand what you have said. I always have my shot on Saturday morning and I usually have the Medichecks blood test on a Tuesday, I have a blood test every six months for my endocrinologist (for thyroid and other Vits which just happens to include B12) and the B12 result is always "over range", it just seems really odd that when I received my results today the level had dropped by over 50%.

I have been feeling very lethargic with dizzy spells for the last month with similar symptoms to when I was first diagnosed with PA - so it now makes sense that it is probably because my B12 levels are much lower.

nkindia profile image
nkindia

Which injection are you taking? Hydroxycobalamine or cyenacobalamine?

HKAnne profile image
HKAnne in reply tonkindia

Hi Nkindia

I am taking Hydroxocobalamin

nkindia profile image
nkindia in reply toHKAnne

I think serum B12 tests are of no use once you start treatment. The only test that can help us figure out what's the B12 situation is MMA test ( Methyl Melonic Acid test) and also Homosystine level. Can you get that checked?

HKAnne profile image
HKAnne

I am going to try to see my GP this afternoon and possibly get a referral back to the Neurologist

snowbird1234 profile image
snowbird1234

if your body can't absorb enough of it from the foods you eat. Your intestines absorb vitamin B12 from food. A protein your stomach makes called “intrinsic factor” helps your body absorb it. When you don't have enough, you have a type of vitamin B12 deficiency anemia called “pernicious anemia.”

People who have pernicious anemia can't absorb enough vitamin B12 from food. This is because they lack intrinsic (in-TRIN-sik) factor, a protein made in the stomach

this leads me to ask about your weight, your habits/stress Level & diet....

worst case is:

Conditions that affect your small intestine, such as Crohn's disease, celiac disease, bacterial growth, or a parasite. Immune system disorders, such as Graves' disease or lupus. Been taking certain medications that interfere with the absorption of B12.

but Maybe you are stressed out & not eating heathy or eating some thing that blocks b12

I have low iron & low b9 & low b12....

when our blood is too Large it will not pass thru to give Oxygen to our body.....

Macrocytic anemia occurs when the red blood cells are unusually large. ... This means the blood is not as oxygen-rich as it should be. Low blood oxygen can cause a range of symptoms and health problems. Macrocytic anemia is not a single disease, but a symptom of several medical conditions and nutritional problems

contact me If I can help you... or Encourage You... hang ON,, you are about to find the Trouble... I am Praying for You to know the real problem...& Healing... I feel so so so much Better... I drink Liquid Iron & take pills & shots... & i hate it all but I am Worth IT...& You are Also

HKAnne profile image
HKAnne

Hi snowboard1234,

I was diagnosed with PA by a Neurologist 3 years ago, I have positive intrinsic factor antibodies. My body does not absorb B12 which is why I self inject weekly.

My current concern is why the B12 levels in my blood have suddenly dropped during the last seven months when I have been injecting the same dose for the last two years.

My diet is very healthy, I am not overweight.

Thank you for your kind wishes.

alamagpa profile image
alamagpa

Are you able to see a hematologist?

Not what you're looking for?

You may also like...

How much should levels decrease by in 6 months?

Hi all, Earlier this year I was diagnosed as having low b12 (114) so i had the course of 6...

Reference for not testing once b12 injections started? Threatening to stop injections due to high b12 levels in blood test.

Hiya I have a call booked with the practice nurse who wants to stop my b12 injections as a recent...
TFH1 profile image

New symptom of tingling and numbness in one foot but self injecting for 18 months. Any ideas on cause?

Hi, Have been self injecting for some time. Alternate day injections keeps my balance problem under...
Highland49 profile image

Private bloods for B12 and folate

Hi I wonder if i can get some advice. Over the last couple of years my b12 levels have been coming...
faras66 profile image

high level B12 984ng/L

hi my GP has not requested to see me again yet my B12 levels are too high and my white blood cells...

Moderation team

See all
Gambit62 profile image
Gambit62Administrator
Foggyme profile image
FoggymeAdministrator
taka profile image
takaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.