New here and looking for advice/reassurance on b12 injections...

[wishart85]

Hi,

So last week I got a call from my GP surgery saying I'd need b12 injections - I wasn't offered an appointment with a doctor to discuss this so not actually sure what my "diagnosis" is. Firstly I'm a little concerned they haven't really asked what symptoms I've had - I went in complaining of ibs-like problems, weight loss and fatigue but didn't even think to mention a whole host of other problems [mood, balance, memory issues, pins and needles in my hands, palpitations, tight chest, breathing problems etc] so I guess I'm asking if any of those things would effect the treatment they'll be giving me?

Also, moving onto the treatment - I've had my first two loading doses over the last 4 days and I wanted to ask if it's 'normal' to be feeling worse since getting them? I'm even more tired than before, I'm aching all over, I'm more nauseous than before too. Any reassurance that this is normal and should go away soon would be much appreciated. I suffer with health anxiety and emetophobia so I'm going out of my mind over this!

Sorry for the long post and thank you for reading.

[clivealive Forum Support]

Hi wishart85

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having injected 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.

If you can get to see a doctor please also ask him/her to check your Folate level as this and B12 help your iron to make red blood cells and to function properly.

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 but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well.

[wishart85 in reply to clivealive]

Thank you for your response clivealive I tick off quite a few of the symptoms from both lists but I'd gotten so used to most of them I just didn't pay attention to them anymore. I guess now my body is kicking back into action slowly I'll be more acutely aware of things for a while as I get used to the new version of me! Thanks again, it's good to not feel alone in this!

[clivealive Forum Support in reply to wishart85]

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.

Can you see yourself among any of the above people?

[Gambit62 Administrator]

as clivealive says it isn't uncommon to feel a little worse when you start treatment and it can take a while before you feel better.

The symptoms you mention include neurological symptoms - the pins and needles in particular. The recommended treatment if you have neurological symptoms is more aggressive - shots 3x weekly until symptoms stop improving and then maintenance doses ever 2 months.

These are recommendations in the NICE guidelines and in the BCSH guidelines on diagnosis and treatment of cobalamin and folate disorders.

You may need to point this out to your GP and, unfortunately you could have a fight on your hands but this forum is here to support you.

Worth making a full list of symptoms and monitoring how they change

pernicious-anaemia-society....

[wishart85 in reply to Gambit62]

Thank you Gambit. I feel a little more at ease knowing it's not uncommon to feel worse to start. I'm going to try get an appointment with my GP because so far no-one has actually explained anything to me other than the receptionist over the phone saying I have low b12 and iron levels! The nurse who gave me my first two shots had to ask me why I was even there so didn't think I'd get much sense out of her..!

The making a list of symptoms and tracking them is a good idea, I'm definitely going to do that. Thank you again

[Gambit62 Administrator in reply to wishart85]

you may not get much sense out of the GP in relation to B12 - they tend not to understand what B12 deficiency is and how it works and tend to be rather fixated on anaemia as the cause of symptoms when anaemia is actually a symptom. Hope you have one who knows about and is interested in B12 but be prepared for the worst.

[GGourmet]

From my experience, it took quite a while to feel better. After reading so many other experiences, it appears that we all have a different reaction.

I’m no medical person but it appears that some have issues that are not shown up in bad blood chemistry, whereas others do.

I didn’t have poor blood chemistry but did have plenty of tiredness, exhaustion and neuro problems. I started recovering fairly quickly within a week or so.

I know that where there is blood chemistry issues it can take several months to replace blood cells, so perhaps those should expect it to take longer to start improvement.

This is a long path and 2 years on, I am still getting better and I think everyone would agree that you are never quite back to your original self. The injections are not a miracle cure.

[wishart85 in reply to GGourmet]

Thanks for your reply I'm not sure what the rest of my blood test results came back as as I've not been able to get an appointment with a doctor and the nurse giving me the injections wasn't even sure why I was there!

Good to know about the original self thing - I guess I'm quite fortunate that this feels like it's been going on for so long [and before that struggling with depression/anxiety] that I don't even know what my original self felt like!

Thanks again - it's good to have a place to chat where people understand - my friends and family mostly just think I'm lazy and over-reacting!

[GGourmet in reply to wishart85]

If you are in the UK you can ask for a copy of your test results. This should identify whether there was associated blood chemistry issues. From there you might want to arrange an appointment to discuss. I would say you might be better to leave sleeping dogs to lie, just in case they decide to withdraw treatment- choice is yours but get the results first and perhaps share them here.

[palmier]

I had a somewhat similar experience more than 20 years ago. A GP told me my B12 values seemed a little low and prescribed 1mg pills. That was all. No follow up, no further tests, no information. This was before internet so I couldn't go online to do my own research. I had no idea it could be a sign of a serious health condition. I found a nutritional table though and noticed I got enough (RDA) B12 from milk alone, so I couldn't understand why I would be deficient or why I was prescribed a years supply of B12 daily. I took a few pills, didn't notice much change, and probably gave up because it all seemed so confused. Perhaps I should've persevered.