MMA advice please after starting inje... - Pernicious Anaemi...

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MMA advice please after starting injections

B12jab
B12jab

Hi can I have some advice please,I have started alternate day self injections of b12 is it too late to have the MMA test now I’ve started injections please? Thanks

14 Replies
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An MMA test is useful to show that not enough B12 is actually getting into the cells. People can use the test for two reasons.

If you take the test when you haven’t taken supplements then it can indicate a deficiency. It’s not a 100% certain test for B12 deficiency as there are other things that can raise MMA levels,

Some people believe they may have a functional B12 deficiency, where they have lots of B12 in their blood, but not enough is getting into the cells for some reason. To test for this you need a lot of B12 in your blood.

So the question ‘is it too late’ depends on the answer to the question ‘what are you trying to prove’.

B12jab
B12jab in reply to fbirder

My answer would be to the first question you stated but I guess it’s too late to know now as I’ve started injections

clivealive
clivealiveForum Support

Hi B12jab A wiser person than I has commented previously:

Times for testing

"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

"

B12jab
B12jab in reply to clivealive

Thanks so much for your reply does this mean my feelings for months long are not b12 deficiency?

clivealive
clivealiveForum Support in reply to B12jab

Whoa B12jab I thought your question was about MMA testing.

Why did you start alternate day injections?

Were your serum B12 and Folate levels tested beforehand and what were the results?

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, or infections such as h-pylori 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), Pancreatic insufficiency, 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.

Do you see yourself in 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 (amongst others) 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 but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

B12jab
B12jab in reply to clivealive

Hi thanks for your reply,I have felt unwell for long time chronic fatigue dizziness weakness no energy,I obtained my blood results and found my B12d has been on the low side for a while at its lowest 265 and November 280 I was told via Facebook support groups that this is a low level of B12d with feeling so desperate I started the self injections But, my intrinsic factor was normal and my active B12d before injections was 112 unfortunately I never knew about the MMA test I wish I had know lm this, so my question is,is this B12d with all the other normal readings active B12d and normal intrinsic factor

Many thanks

Claire

clivealive
clivealiveForum Support in reply to B12jab

If you took any B12 supplements before the tests were done this will have "skewed" to results and your levels would have appeared "Normal".

Sadly the Intrinsic Factor Antibody (IFA) test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of P.A. Were you supplementing before the IFA test and if so how long after one of your injections was the test done?

As I listed in my previous reply the are many causes of Vitamin B12 deficiency and you haven't said whether you fit into any of them.

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

What of the above symptoms do you have?

B12jab
B12jab in reply to clivealive

Thanks for reply! I had waited until two weeks after injections for the intrinsic factor test, my symptoms are

Crushing fatigue

Zero energy

Weakness a feeling that my limbs are weak heavy

Dizziness feeling wobbly like off balance

Long term severe anxiety

Body jumps jolts

More short tempered than usual

Loss of mojo

Have no motivation

Brain fog a feeling of Head stuffed with cotton wool (this has subsided since injections so has brain fog and dizziness a lot better although I still get odd sensations in head.

Forgetting things confused

Irritated scalloped tongue

Odd bouts of tinnitus

clivealive
clivealiveForum Support in reply to B12jab

They would fit in with a Vitamin B12 deficiency. Was your Folate tested?

B12jab
B12jab in reply to clivealive

Yes it was fine in November it was actually 23! I had been eating heaps of green veg due to my iron deficiency, do you think I should carry on with injections but reduce to weekly? It’s this self treating i don’t like and not having a diagnosis

clivealive
clivealiveForum Support in reply to B12jab

You cannot overdose on B12 as any excess is excreted via your urine and only you can know when there is no further improvement in your symptoms which is what the guidelines say. When that state is reached then you can scale back and go on to "maintenance" injections every couple of months.

Please remember I am not a medically trained person.

Cherylclaire
CherylclaireForum Support

I had my plasma MMA levels tested by Haematologist way after starting NHS injections for B12 deficiency - they were consistently raised: between 350- 400 (range: 0-280) - however, not raised enough in their opinion to be B12 deficiency-related, so got tested for SIBO, since small intestine bacterial overgrowth can cause raised MMA levels too.

My SIBO breath-test results could be interpreted 2 ways: fast transit (IBS) or SIBO. Got given antibiotics in case it was SIBO, which caused me to have really bad vertigo. No reaction otherwise, so from that, it was decided that it was possibly IBS- which is just a series of symptoms (syndrome) and not a diagnosis. All my other symptoms were ignored as being not related to Gastroenterology.

I never had an MMA test prior to having B12 injections for deficiency, so don't know what my "normal" level is.

Haematology suggested that GP treat me "as per guidelines": ie back to 1 injection every 2 months, which had already failed to help me stabilise. That's when I started self-injecting.

Is it too late, then, to be tested ? I would say "no"- but be aware that most of the consultants I have seen have been very ill-informed about B12 deficiency, B12 itself, and the range of symptoms that they consider relatable is extremely short ! This may shock you, but there are many people here with similar experiences. Do your homework first, and be prepared to hit a brick wall.

B12jab
B12jab in reply to Cherylclaire

Thanks for your reply! I may have it tested anyway was your serum B12d low to start with ?

Cherylclaire
CherylclaireForum Support in reply to B12jab

Yes, it was, B12jab , initially picked up from tests at just under range : 196ng/L (range: 197 - 771 ng/L ). My MMA was tested when I became a lot worse once on 1 injection every 3 months, a lot more symptomatic, although serum B12 then at over 2000 ng/L.

Incredibly, my GP had remembered a patient reacting similarly 10 years previously, and had made a note-to-self about Methymalonic acid, because she knew she would not remember the name ! This patient had been diagnosed as having functional B12 deficiency, confirmed by her raised MMA levels. So was I. GP says these are the only 2 cases she has encountered and that raised MMA levels are rare. Lucky I went to her.

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