New to B12

Allergies, blood and immune system
1

Hi everyone.

I’m looking for some information off people who suffer with B12 deficiency.

I had blood works done 3 months ago with B12 showing at 176 catergorised as ‘low’ doctor refused to give me anything even though my symptoms are as follows.

Tiredness all the time.

Pins and needles hands and feet

Tingling back off thighs

Lazy legs ( feel week all the time )

Irritable

Bad mood swings

Genuinely feeling so low and can’t function on times

Repeated headaches

Rapid heart rate that I can hear

Most of which are symptoms.

Finally found a new doctor surgery and registered there, they done a further b12 test which shows level 146, this coming Friday I have my first injection and will be given leaflets and information regarding b12 then.

My new Gp was disgusting that I wasn’t treated for this the first time round.

Have anyone else experienced anything like this

Thanks in advance x

2

I have b13 deficiency, my doctor was rubbish as well said I’m only boardline so go on a spinach diet so after moaning he finally gave me tablets which are really slow working ... I have lots of symptoms including fatigue, feeling really weak, aching body and generally just feeling unwell and they have just said take 3 a day for a month and if they don’t work come back really useless. My sister had the injections and they work within 1-2days hope it all goes well

3

I meant b12 

4

Thank you Abby,

I hope your medication work for you, Best of luck x

5

Sadly there is a lack of knowledge among many in the medical profession about B12 deficiency and P.A.  "It's a vitamin for goodness sake, you get it by eating animal products such as meat, fish seafood, eggs and dairy produce etc!"

You need to find out the cause of your 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, 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?

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.

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.   

6

Thanks for hour reply. It is a disgrace that we suffer like this. I am buying injections online as despite my B12 being 243 my gp refuses to prescribe B12 injections and I have peripheral neuropathy. I am scared of buying online but there doesn't seem an alternative as I cannot take B12 orally or by a spray. x

7

Hey hayley, 146 is way too low, I read that in Japan they raised the recommended levels from 500 up to 1300. So you can see how screwed up we are if we don't start to be our own physicians. I as well, have a story of medical neglect, one of the doctors i went to even said i should stop taking any supplements at all, when i was clearly severely deficient.  It's a battle everyday. You're not alone.

8

Well said.

9

Hi abby, how are you getting on with the medication? I had my first injection Friday, second one will be today, I goto have them Monday Wednesday and Fridays for 2 weeks then one every month, I haven’t found any benefit from it as off yet apart from I’m more tired, irritable and tingly than I ever was before! But I’m sure it’ll kick in soon x

10

Hi Clive 

Thank you so much for your response, seems to me that your more clued up than most professionals so for that I thank you! It’s not hard for a doctor to explain all that to patients for piece of mind, rather than us having to google round and read the wrong researches.

I seen my gp, I had my first injection on Friday, I have my second one today, then therefore after I have to have one every Monday Wednesday & Friday for 2 weeks then 1 a month, as off yet I don’t feel any benefit, just feel more tired, tingly and irritable. But I’m sure they will kick in soon.

After reading through your reply, something raised a flag for me, I hope you don’t mind if I go into detail about another problem possibly relating to b12?

I been having major bowel problems, had a mri but was clear, I had a caliprectin still test and it was moderately highley inflamed, they have now referred me for endoscopy and colonoscopy, now could my b12 be a cause off these bowel problems? Is it necessary for me to have these awful procedures? Is it possible for my bowels to go back to normal working order after my injections kick in?

I understand your no health professional but it seems you have a lot off knowledge in this. I am 27 female btw so I don’t come under the elderly category, I eat well, lots off veg and meats throughout the week, when pregnant years ago I did have to have 5 iron transfusions, could this be related? As it was 10 years ago x

11

"could my b12 be a cause off these bowel problems?" - I think it is more likely to be the other way round and you "bowel problems" (possibly IBS?) may be the cause of your B12 deficiency.

It is also 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

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. 

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 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.

That you say your "maintenance" injections are to be "one a month" suggests you are not in the U.K.  Are the injections cyanocobamalin?

Take care now.

 

12

Thank you for the further information, that could possibly be the reason. I keep saying to my gps that it’s more than likely IBS but because off the inflammation they suspect something else. Yes I am in the UK, I’m not sure what the injection is called but I have my second injection at 4.30 so I will ask the nurse this then let you know 

13

**update** just had second injection, I heard wrong, it will be 1 per 3 months smile

14

Hi jasmyn, thanks for the response,  so sorry to hear that you have had a bad experience too. It’s pure neglect. Have the supplemented you or given you injections now? X

15

Being in the UK. you will be given hydroxocobamalin and three months is the typical duration for patients who do not have neurological symptoms.

However, your loading doses should continue on alternate days until there is no further improvement in the neurological symptoms that you do have according to the NHS/NICE guidelines.

Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

https://cks.nice.org.uk/anaemia-b12-and-folate-deficiency

Your doctor/nurse should be made aware of this.

16

Thanks Clive, my fault I got confused and miss heard the nurse, I thought she said one per month but she re assured me she stated 1 every 3 months. I will check the link out now, thank you

17

Hi don’t see any change really, I wake up and still feel tired as if I haven’t been to sleep yet... need to book another blood test to see if it’s got any better he didn’t even tell me my b12 level they are useless.  I got on holiday next week and I didn’t wanna feel like this as I’m only 18 but the doctors wasn’t rushing things they just said come back in a mood for a follow up. How’s yours going? 

18

Aww that’s awful, you can call them and ask for a print out off your results, some charge some don’t but it’s worth having a copy for yourself, I had a little caravan holiday Friday - Monday, we came home early Sunday Monday as I slept most off the time there, I ruined it for myself and my children it was awful sad I had my second injection yesterday and still feel no benefit, although my right thumb kept stinging almost instantly after having it and lasted hours? I hope they will medicate you soon for it x

19

It’s such a shame we have to suffer 🤕 my sister had the injections and they worked straight away for her These tablets what I take 3 times a day I don’t see working either. X