B12 of 152 duty gp can't be bothered

[margie70]

I been told by the med receptionist my b12 measured 152 I have so many symptoms I feel like I don't really matter one of gp in practise can't be bothered told me it's nothing to worry about.

Can anyone advise please .

[fbirder]

Certainly. The GP is probably unaware of the expert opinion that says that, even with high levels of B12 (and yours are quite low), in the presence of symptoms of B12 deficiency treatment should not be delayed.

Download my summary document - frankhollis.com/temp/Summar... - and the BCSH document linked to therein. Print out the BCSH document and point the GP to the segments I've noted in the first section of the summary -

Clinical symptoms should be treated, not blood levels

BCSH1:

The clinical picture is the most important factor in assessing the significance of test results

assessing cobalamin status since there is no ‘gold standard’ test to define deficiency.

BCSH2:

In the presence of discordance between the test result and strong clinical features of deficiency,

treatment should not be delayed to avoid neurological impairment.

BCSH4:

Furthermore, patients with strong clinical features of cobalamin deficiency may have serum

cobalamin levels which lie within the reference range (false normal cobalamin level).

BMJ1:

If the clinical features suggest deficiency then it is important to treat patients to avoid

neurological impairment even if there may be discordance between the results and clinical features

[margie70 in reply to fbirder]

Thank you so much

[wedgewood]

152 is LOW! Have you been tested for antibodies to the Intrinsic Factor? (IF ) When I was 150 I had several symptoms which were ignored also. Confused, dizzy, exhausted, numb feet and breathless. . I went to a private doctor who found I had P.A.(I.F. test) I took this finding to my G.P who then gave me 5 loading doses of B12 Hydrocobalamin. . But said that non of my symptoms were neurological . Three monthly injections were inadequate, but I was refused any extra. I now have to rely on self-injections to keep myself feeling well. Although as we know the IF rest is only 50% reliable, it is worth having it done.

Forgot to ask if you are a strict vegetarian or vegan, which would obviously change everything. In that case you could supplement with B12 sprays and lozenges!

150 IS something to worry about, and you must take it seriously. Best wishes./

[margie70 in reply to wedgewood]

Hello, thank you very much for the support I feel as though I'm imaging all the symptoms it's getting now I don't want to risk driving due to blurry vision. I used to use colouring for adults to help my mood but I can barely hold a pen which is disheartening. My periods have ceased completely . I do have intestinal endometriosis could this be contributing? I can't peg out the washing or wash and dry my hair without severe pain but no one will listen to me. I do get upset when no one listens. I've never been a vegetarian , a gp I spoke to today told me it was nothing to worry just make an appointment as and when which made me angry.

[Marz in reply to margie70]

Hi margie70 - really sorry to read about the awful treatment you are receiving. I do hope you will soon have the treatment you deserve. Are you taking any other medications that could interfere with your B12 - like something for your digestion ?

Also Endometriosis made me think you could also have a thyroid problem - low B12 and low thyroid often go together. Chicken or egg ? Have you been tested and told you are normal - if so then maybe I can help you a little more.

When B12 is below 500 it can become a neurological condition if left undiagnosed or under treated. You will need injections until some of your symptoms disappear or at the least ease.

I am not a medic - but a thyroid sufferer with a B12 issue

[margie70 in reply to Marz]

Hi marz, I was told that thyroid was normal. I have terrible tingling in my hands and finger tips, headaches , blurred vision, stumbling, memory problems. And mood swings my periods have stopped . I'm due to have bowel surgery end of this yr due to endometriosis attached to my bowel. I'm going to see my own gp on Tuesday and ask about the treatment and why the other gp brushed me off saying it was nothing to be concerned with. I do take omeprazole if I have to take naproxen for pain. I was quite anemic good while ago but he said I'm not now. I don't take naproxen daily only for severe pain. My life is getting restricted I cannot put washing out due to severe muscle pain in shoulders and hands and its every day now. X

[Marz in reply to margie70]

Being told your thyroid is normal is not good. Have you actually seen what was tested and what was the result ? You are entitled to have copies of all your blood tests so do ask for them - ensure there are ranges too. Normal is an opinion rather than a result. What your Doc means is that the result is in range - but WHERE you are in the range is so important.

I have been on the Thyroid forum for 4 years where there are 40,000 people - many of whom have stories similar to yours. Everyday we are reading that people are told normal by their GP's.

So you will need the following tested - TSH - FT4 - FT3 - Anti-TPO and Anti-Tg. Also VitD - Ferritin - Folate.

How long have you been taking a PPI ? They are known to reduce acid in the stomach so much that you are unable to obtain nutrients from your food. You need good acid levels in the stomach to extract B12 in particular. There must be something natural you can take to protect your stomach lining with the pain meds.

Click onto my name and read my journey to wellness - I totally sympathise - but at the end of the day we cannot rely on Docs to treat us as they rely too heavily on blood test results and do NOT look and listen to the patient.

[denisehugs45]

Ask to be referred to a gastrologist if you get no joy with your GPas they will do further tests and give u b12 injections and if the think you have PA or b12 Deficient like myself they will instruct your Dr and tell them you need injections for life mine did and I've had the every 3 moths since 2008 x

[clivealive Forum Support]

Hi @Margie70 your result will probably be marked as "normal" simply because it is within the range quoted on the Med Sec's computer screen but I would say you are definitely in a "grey area".

Do you know why your B12 level is so low and what symptoms do you have?

For instance with your lifestyle:

Are you vegan or vegetarian?

Have you had stomach surgery (or any surgery/dental treatment using nitrous oxide)?

Are you type 2 diabetic on Metformin?

Do you take antacids or use Proton Pimp Inhibitors for high acid?

Are you on the contraceptive pill?

Do you take part in extreme sports or exercise rigorously?

Look at the following symptoms and "note" the main ones you have and present the list to your doctor:

1 Pernicious Anaemia - Symptoms

1.1 General Symptoms

The following general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

1.2 Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

1.3 Gastrointestinal Symptoms

The gastrointestinal symptoms of vitamin B12 deficiency may include:

 A sore tongue

 Appetite loss

 Diarrhoea and/or constipation

 Stomach pain

Hopefully the doctor will look at you and not just the computer screen.

I wish you well for the future.

[MariLiz]

My GP began to treat my B12 when my level was 176. I had a lot of the symptoms of low B12, and was relieved that I had a diagnosis and treatment. Have a look at the Pernicious Anaemia Society website, they have lots of information and can provide leaflets for GP's surgeries. Especially helpful if your GP is unwilling to treat you.