Trying to find treatment protocol file - Pernicious Anaemi...

Pernicious Anaemia Society

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Trying to find treatment protocol file

Runnerlove profile image
8 Replies

Im so sorry for posting this silly question but with this brain fog I’ve spent days trying to locate the treatment info. I cannot remember where it was located. Could a kind soul please send me the link. I’m so gresteful. Just started b12 methyl to test it out but after some serious headache and feeling exhausted I think I’ll try Hydroxocobalamin next. I think it was every other day for two weeks the beginning but going to find the correct info to take to my naturopath who gives me the injections.

Thank you so much. Sorry my brain is just not functioning so well.

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clivealive profile image
clivealiveForum Support

Hi Runnerlove Information about loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

You may need to have your iron and Folate levels checked.

I'm not medically trained.

Runnerlove profile image
Runnerlove in reply to clivealive

Thank you for the link and info. Unfortunately I’m in Canada and do the link does not work. It says it can only be reached in the UK.

clivealive profile image
clivealiveForum Support in reply to Runnerlove

So sorry about that. Could you try "Googling" "Vitamin B12 Deficiency Treatment Guidelines" where you are?

Or try this one.

www2.gov.bc.ca/gov/content/...

Runnerlove profile image
Runnerlove in reply to clivealive

Saw this one myself but they suggest oral form because the gov too cheap to pay for injections.

Im doing them privately. Was thinking every other day injections of methyl or hy at 1000 mcg. I’m just wondering if that is an ok amount for two weeks or until the neurological symptoms are gone. Then go onto weekly injections for month then once a month till I feel fully better. Just trying to develop my own schedule based on what others have had success with because I know my doc isn’t going to do it. He told me just use otc sublingual.

clivealive profile image
clivealiveForum Support in reply to Runnerlove

Sorry, I didn't read it.

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), 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"?.

Treatment for PA and non-dietary vitamin B12 deficiency is virtually the same.

The symptoms of PA are the symptoms of the B12 deficiency that it causes. If the cause isn't dietary then it is an absorption problem so you need to find another way of replenishing B12 initially. Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.

Do you know whether you have an absorption problem?

Treatment of cobalamin deficiency

Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks, then every three months.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

.

Do you know what your Folate level is?

It is important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.

Both iron and folate may be needed so please have these levels checked by your doctor.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

Runnerlove profile image
Runnerlove in reply to clivealive

Very in-depth response. I had been under prolonged stress for last year and half before getting really sick. I’ve also started more vegan diet. I believe the combo did me in.

Have not had folate level checked but my iron is very high and b12 was low. Unfortunately it was only tested 4 months after I became very ill and at that time it was 332. Now 7 months after last test it’s 423. My symptoms have reduced by Im still unwell probably not at levels that are optimum for me yet. I think I’ll start with every other day injections next week and keep going till all symptoms dissipate. They do add folate in my b12 injection. And I’m also supplementing magnesium and vit d3 which were at the bottom of the ranges. I believe my hormones are going through something because I’m so more emotional than my usual self. And my TSH levels are continually going up. Started in November at 1.01, then 1.23 April then 1.34 July.

clivealive profile image
clivealiveForum Support in reply to Runnerlove

I'm sorry to read you have so many health issues and hope that the B12 and Vitamin D supplements will soon start to help.

I wish you well from the U.K.

Runnerlove profile image
Runnerlove in reply to clivealive

Thank you.

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