B12 help

[alimariebell]

Seen 2 drs this week, first told me to go to the chemist for supplements, second despite me quoting nice etc says im not even low. Lots of neurological problems. Dont know where to turn now. Was advised to ask on here . also vit d of 36

[clivealive Forum Support]

Hi alimariebell

I think you should go back to your doctor and quote what 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...

Make a list of your symptoms and present this to your doctor and insist treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to 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...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

It is also important that your Folate level is "healthy" 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 and your B12 levels are "bumping along the bottom of the range.

What did the doctor say about your Vitamin D level?

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

and bid you goodnight.

[alimariebell in reply to clivealive]

I quoted nice he said i read too much and all my tests are fine and healthy. I said it even says on results treat if a problem.. He said i just sound stressed, i said i am because no one is listening. He said vit d of 36 is perfectly healthy. He said i dont look like an ill person so im thinking i shouldnt have washed or got dressed for the appointment.

[clivealive Forum Support in reply to alimariebell]

This saddens me alimariebell .

Do you have any idea why your B12 and Folate level are at the bottom end of the scale?

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.

Can you see yourself in any of the above "people"?

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

Do you have any of the above symptoms?

In view of your doctor's "lack of care" in ignoring the cautionary note about "B12 repletion therapy" it looks like you are going to have to have a word with your local pharmacist about supplementing - either that or bumping up your diet by eating more meat, fish, eggs, poultry and dairy produce for B12 and leafy green vegetables for Folate.

[alimariebell in reply to clivealive]

Every thing is on outside of ranges ranges so i have been feeling like autoimmune. I have had many symptoms. Vertigo enough to cause falls. Memory loss, aches in joints and musclles my neaurophils are 2.8 with a starting range of 2 so im thinking iv nothing to fight. My plasma visocity is 1.72 which is bang on top of range. I have been told all absolutly fine

[Plucky1976 in reply to clivealive]

Hi Clive....when you say in balance, what exactly do you mean?

[clivealive Forum Support in reply to Plucky1976]

It's important that both B12 and Folate levels are within the ranges <from - to>

A deficiency in either B12 or Folate can lead to macrocytic anemia, where red blood cells are larger than normal. People suffering from macrocytic anemia cannot produce red blood cells in a sufficient quantity which means they have more hemoglobin content present in them than ordinary red blood cells.

Remember I'm not medically trained - sorry if you were confused.

[Plucky1976 in reply to clivealive]

Thank you! No worries.....I just wondered if you meant in range or one couldn't be higher and the other in range. I'm in range with all three but still trying to figure out one of my issues

[clivealive Forum Support in reply to Plucky1976]

The problem with "ranges" is that they are based on averages or the "norm"and we human beings have so many variables so what levels might be good for one person might not suit the next. Similarly with the frequency of B12 injections one size does not fit all as many doctors would have us believe.

I hope you find your answers.

[Gambit62 Administrator]

alimariebell - sorry to hear that you have come up against a difficult group of GPs

The next step would probably be to write to your GP/the practice with a copy to the administrator for the practice - include the test results - which presumably are from a test done by the practice - list your symptoms and ask why you are not being treated in accordance with the advice on the test results and the advice in the BCSH guidelines on the diagnosis and treatment of cobalamin and folate disorders which the GPs can access through the BNF but can also be accessed here

onlinelibrary.wiley.com/doi...

you may also wish to join and contact the PAS society. They may be able to provide you with more advice and potentially intervene to explain more clearly what current guidelines are in relation to diagnosis

pernicious-anaemia-society....

pernicious-anaemia-society....

[alimariebell in reply to Gambit62]

Thank you i think a letter may be best i will look at all of this

[alimariebell in reply to Gambit62]

I have joined and will seek their help thank you

[wedgewood]

You have the support of a fantastic society . Martyn Hooper , our chairman is doing all he can to get better treatment for us . But in the meantime , you can get direct help from the society now you have joined . Best wishes for a satisfactory outcome .

[alimariebell]

Thank you, i have had tertrible vertigio today. Dr yesterday telling me i dont look like an ill person mademe give up but feeling so rough with brain fog today has made me want to fight it

[MariLiz]

So very sad to hear of yet another doctors surgery who have their heads in the sand.

You have to fight, I know what a huge difference getting the injections has made to me. I was feeling so unwell and thought I might have something terminal. I was lucky that my husband came with me to the surgery, and was able to reinforce just how bad I was feeling.

I hope the Pernicious Anaemia Society will give you some back up and intervene with your surgery.

Please keep strong, and don’t give up.

[alimariebell in reply to MariLiz]

Thankyou, been feeling so bad today i understand what you mean about fearing the worst.. They make me feel like im mad and imagining it though. Going to type up a letter at work tomorrow to send them and ring the society for advice

[Emmamed76]

could there be another reaason to why you are having neuro problems, in my understanding a persons B12 has to have been very low for a long time to affect them in a neuro way .

[alimariebell in reply to Emmamed76]

To be fair i have had a lot if b12 deffiency symptoms for a long time with out knowing why and this is the first time i have been tested for b12. Newly logged into my surgery notes i can see back as far as 2016 where my ferratin was 20 then but i was told it was normal at the time

[Emmamed76 in reply to alimariebell]

as the range for ferritin starts at 20, if yours was 20, that is normal. the range is so big to cover ppl, cos as u said it can vary from person to person. they do change ranges from now and again too. I was admitted to hospital last sept and from that admission I found out I had low B12, Folate and Vit D. the only symptoms I has was tiredness and put that down to my thyroid

[alimariebell in reply to Emmamed76]

My free t4 was 12.2 last check and my tsh keeps going from 2.8 up to 3.6 and down to below 3 again. All normal but enough to give me some problems. All my ranges on blood tests seem to be top or bottom apart from vit d which is 36. I have been rough for a long time

[Emmamed76]

i dont know that the t4 ranges are, i know my t4 is 95 atm (but thats due to something else), i know my tsh is upto 5 or 5.5 and i sit nicely in the middle of that.