Vitamin B Injection: After 4 years of... - Pernicious Anaemi...

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Vitamin B Injection

jrb85 profile image
14 Replies

After 4 years of neurological symptoms and extreme fatigue, my GP gave in today and gave me a vitamin B injection. He said that he wasn't going to give me a "loading dose" as my levels aren't classified as deficient (236) but instead gave me a maintenance dose. He has told me to go back in 2 months. I'm a bit concerned as having read through other people's treatments and lots of stuff online it seems that several injections are needed over a course of a few weeks rather than just one every few weeks / months? Will I feel any effect from this one off injection? Any advice or thoughts would be greatly appreciated!

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clivealive profile image
clivealiveForum Support

Are you in the U.K.?

U.K guidelines are that for neurological symptoms B12 injections should be given every other day until there is no further improvement.

Despite you B12 level being in the "Normal" range your doctor should be treating you, not just looking at his computer screen unless it is to look up 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...

Also ask to have your Folate level checked.

Do you have any idea why your B12 level is at the lower end?

jrb85 profile image
jrb85 in reply to clivealive

Yes I am in the UK.

My folate levels were apparently on the "lower end of normal" and so was told to take some extra folic acid.

It has taken me so so long to get to this point - I swear he only did it to stop me crying!

I'm afraid I have no idea as to why my levels are at the point they are.

clivealive profile image
clivealiveForum Support in reply to jrb85

Sorry that were so distressed with your doctor jrb85

I'm sorry this will be a bit of a heavy read but maybe you can "see yourself" amongst the "people" below.

Who’s at greatest risk for B12 Deficiency?

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 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.

What symptoms are you having?

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

Let us know how you feel after the one injection.

I am not a medically trained person but there are others on here who will be able to give you good advice.

jrb85 profile image
jrb85 in reply to clivealive

I don't fit in to any of those categories apart from my mother having Type 1 diabetes.

I already have neurological symptoms and have done for 4 years, characterised by intense itching sensations in my arms. Other symptoms are fatigue, forgetful, losing balance, depression (could be because I'm so tired!) And weakness in my arms. It's the fatigue that gets me - it is crippling and had such an impact on my family.

I just hope I see some mild improvement from the one injection I had today so that I can go back and put in a case for having proper loading doses!

Thanks for all your help.

jrb85 profile image
jrb85 in reply to jrb85

Ps - my folate levels were 2.9

clivealive profile image
clivealiveForum Support in reply to jrb85

That's probably a bit low.

You need to eat plenty of red meats, fish (exluding wedgewood 's raw salmon :( ) seafood, poultry. eggs & dairy produce. That's where we naturally source Vitamin B12

Rich sources of folate include spinach, dark leafy greens, asparagus, turnip, beets, and mustard greens, Brussels sprouts, soybeans, beef liver, brewer's yeast, root vegetables, whole grains, wheat germ, bulgur wheat, kidney beans, white beans, salmon, orange juice, avocado, and milk. Folic acid is also being "fortified into" many of our breakfast cereals.

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.

Folic acid is crucial for proper brain functioning and plays an important role in mental and emotional health and works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine.

Is you diet OK jrb85 ?

jrb85 profile image
jrb85 in reply to clivealive

My diet is ok. I'm just concerned that a one off injection is not going to make any difference and that I need the proper loading doses but he said my levels weren't low enough and didn't want to give me too much.

clivealive profile image
clivealiveForum Support in reply to jrb85

Perhaps you could ask your doctor to refer to the guidelines from the British Society for Haematology for treatment of B12 Deficiency when the serum test level falls within the "Normal Range" but the patient has neurological symptoms. Clause 4 states

"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

To read the full guideline click on the link and "Go to full guideline"

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

wedgewood profile image
wedgewood in reply to clivealive

That's a great list that you have compiled ! I have printed it off for future reference . There is one omission ! I had a friend who used to eat a lot of smoked salmon ( most days in fact) She became infested with fish tapeworm which left her totally depleted of B12 . So eating a lot of raw or insufficiently smoked fish which hasn't been frozen , can lead to B12 deficiency .

Thanks for all your great input on this forum

Marz profile image
Marz

Have you had your Ferritin and VitD checked. Ferritin is good around mid range and VitD around 100. Low B12 symptons can overlap with low thyroid and I am wondering if you have been adequately tested - not just the TSH. Docs often say results are fine when they mean in range - it is where you are in the range that matters. Your comments about fatigue had me thinking 😊

jrb85 profile image
jrb85 in reply to Marz

They were fine and thyroid was fine. I think my iron levels were on the lower end of normal.

Marz profile image
Marz in reply to jrb85

Having been on the Thyroid forum here on HU for six years - I have read the word *fine* many times. Do you know what was tested and the actual results with ranges ? You need to know the TSH - FT4 - FT3 and the Thyroid Anti-bodies - TPO and Tg. Even without a thyroid issue that has been diagnosed you need GOOD levels of Ferritin - Folate - B12 - VitD for the T4 to convert into the ACTIVE thyroid hormone T3.

Gambit62 profile image
Gambit62Administrator

If you are based in the UK then I would suggest that you write to your GP pointing out the following:

serum B12 is not a gold standard test. It misses 25% of people who are B12 deficient and will also pick up 5% who aren't. Evaluation of symptoms is therefore important.

whilst macrocytosis is a common symptom of B12 deficiency it is not a defining characteristic, nor is the cause of all symptoms. macrocytosis is not present in 25% of people presenting with B12 deficiency.

the BCSH (British Council for Standards in Haematology) recommends dealing with presentation of neurological symptoms as a matter of urgency and the treatment regime is loading shots 3x per week until symptoms stop improving (with a review at 3 weeks) and then maintenance doses every 8 weeks. This is because there is a serious risk of nerve damage becoming permanent if not treated promptly.

onlinelibrary.wiley.com/doi...

NovicePA profile image
NovicePA

Print off the BCSH guidelines from the website and send them with a letter to your gp stating you require treatment in line with their guidelines.

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