Please advise me

[Numbsew]

Please could you advise me on the next best step. I saw my gp on thursday with the following symptoms,I have tingling arms, mild chest pain and aching left shoulder, memory loss, brain fog, slightly swollen tongue, ridged finger nails, poor balance and I am increasingly clumsy. I have been told in the past that the chest pain is muscular but I am not convinced. I have 4 children and was b12 deficient in 3 of the 4 pregnancies. My grandmother had pernicious anaemia.

Following the consultation I had a phone call from the gp receptionist saying that the doctor has checked my blood results and they are fine except that I am slightly anaemic so should come back in December to get my hb levels checked again. .Blood result shows my b12 as 319 ng/L. I asked for another appointment to see the same gp but was told that would be a 3 week wait. What should I do? Just wait the three weeks to pursue it or take some other course of action?

[clivealive Forum Support]

Hi Numbsew is your doctor aware of your family (and personal during pregnancies) history with P.A and B12 deficiency?

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

You are "ticking off" a few of the above.

Your serum B12 level at "319 ng/L" although classed as Normal (I hate that word) it is by no means high and according to The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

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

Was your Folate measured along with the B12?

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.

[Numbsew in reply to clivealive]

Can’t see folate on the list. Ferritin was 28ug/L. GP will probably have forgotten about my grandma. I told her about 15 years ago. She asked me about diabetes family history.

[Numbsew in reply to Numbsew]

I can tick off irritability too. I am 49 so had put that, and some other symptoms like forgetfulness down to that. ☹️

[clivealive Forum Support in reply to Numbsew]

The new BCSH guidelines say: “Plasma tHcy and/or plasma MMA, depending on availability, may be considered as supplementary tests to determine biochemical cobamalin deficiency in the presence of clinical suspicion of deficiency but an indeterminate serum cobamalin level”.

southtees.nhs.uk/services/p...

You could ask for an MMA test.

Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

Please remember I'm not medically trained

[fbirder in reply to clivealive]

I think there are other possible causes of high MMA that need to be ruled out before saying it’s definitely caused by low B12. Kidney problems is one IIRC.

Of course, symptoms of a deficiency, plus borderline serum B12 added to high MMA should be pretty good grounds for a B12 deficiency.

[clivealive Forum Support in reply to fbirder]

Thanks fbirder

[Numbsew in reply to clivealive]

Thank you. How long does it take for b12 levels to fall? I had it checked a year ago and it was at 400

[clivealive Forum Support in reply to Numbsew]

You have several years "store" of B12 in the liver and (as long as you don't have an absorption problem) this is replenished or topped up from the daily food (mainly animal products) you eat.

If for instance you are Vegan or don't eat sufficient meat, fish, seafood, eggs, poultry or dairy produce then your "store" of B12 diminishes until you become deficient.

Absorption problems can be caused by certain medications such as 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 with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), Pancreatic insufficiency, or any other disease that cause malabsorption of nutrients, plus autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison disease etc. - the list goes on and on.

Even just going to the dentist and having nitrous oxide administered may "wipe out" your B12 if you have too much of the gas. Kids "using" this "recreationally" are in danger of this.

As to why your level has fallen from 400 to 319 in a year perhaps you can answer that for yourself - with four children is it possible you are not "looking after yourself" skipping or rushing meals and missing out on vital nutrients?

As Frank77 says below, and many others do including myself, you may like to consider supplementing with B12 sublinguals, sprays or patches - they can do you no harm - the only consideration being that if you want to have further tests they will skew the results and make treatment by your doctor an even more remote possibility.

As I say, I'm not medically trained but I'm still "clivealive" at the age of 77.

[Frank77]

Hello Numbsew. I had most of the symptoms you describe before I realized I had PA. The one that struck me most was the chest pain in my left chest. I saw two GPs, a cardiologist, a neurologist and two gastro types about this and none of them even mentioned B12 deficiency as a possible cause. It was only after research on the internet, and particularly after finding this site, that I finally discovered the truth. This was in mid January 2018. I immediately rushed to a local health food shop, bought the best B12 supplements they had (Solgar 1000 mcg drops) and started a regime of 2000 mcg of these a day. After two weeks the chest pain had completely disappeared (for the first time in over a year), brain fog was significantly better, as was balance, confusion, irritability etc. I have not had any chest pain since then. This was only the beginning of my B12 journey: like many people on this site I have since been experimenting to try to establish exactly how much B12 I need, in what form ( I mix injections with sub-lingual) and how often. I won't say that I am 100% my old self - if I am low on B12 some symptoms begin to return - mainly brain fog, irritability and balance problems. The chest pain though has never returned. But at least I now recognise the symptoms and know how to react. Main message is that I feel immeasurably better than this time last year and have the thing under control. And all without the input of a single 'medical professional'. I am not saying that this will work for you - we are so different - but your symptoms certainly suggest B12 deficiency and chest pain is a recognized, though less well-known - symptom. I hope this helps - best of luck to you!

[viniciuspaiva08]

Sorry for the bad english. The last time I tested my B12, it was 601. Although it was in the normal range, I felt the symptoms day after day. When I tested MMA, I was able to see that I really was B12 deficient. So, the advice I gave you is: if all other blood tests are ok and you're right about the symptoms, check your MMA. Thanks.