I'm looking for advice as I'm overwhelmed and confused about what my blood tests mean. I'm a coeliac sufferer, I suffer dreadful with restless legs syndrome which I take 3 or 4 pramipexole and 2 codeine every single night for past 4/5 years. I take ferrous fumerate for low iron levels. I have been having repeated chest pains and upset stomach, shooting hot pains in both feet with cramping. I get confused and foggy brain daily. My Folate levels last week were 1.7 and my B12 level was 2.52.
I've been given 5mg of folic acid Hicham I've been taking for 1 week yet Im still shattered, sleeping loads, chest and breathing heavy. Can anybody tell me what type of aneamia I have?
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HellsBells75
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I see your folate and iron are being "treated" but what is being done about your B12?
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.
Do you see yourself among 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
I am not a medically trained person but I have had Pernicious Anaemia (a form of B12 deficiency) for 46 years.
Hi yes I have coeliacs and my body doesn't store or produce iron. I have nearly all of those symptoms except for the sore tongue and the yellow eyes. I'm in the UK and I am a care worker who typically works 60 hours a week and I am really struggling to find the energy to get out of bed and to work every day but I need to work to pay the bills. I know my oxygen levels must be low as I have heavy chest and pains around my chest feels like it's compressed, breathing is heavy and I'm starting to get worried about the risk of cardiovascular disease /stroke etc.
Make a list of your symptoms and present this to your doctor and ask him to 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"
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.
I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.
I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.
PLEASE tell me you mean 252 on your B12 and not 2.52?! I think they'd have you on a drip of B12 if it was that low?!
As for the folate being low, folate is required to process B12 at a cellular level so without folate, it doesn't really matter what your B12 is, it's still going to be "not enough" as far as cells and symptoms go.
I think if your B12 is 252 rather than 2.52 I would say as it's in the "normal" range that they're not going to be all that worried about it.
The concern about your folate being low and being treated for is slightly reassuring because whatever B12 is in your blood will be being processed. However, saying that - if it really is as low as 2.52 then you will need a severe course of injections to get it up to the desired range.
Can you please confirm whether you typed it wrong, or whether it really is as incredibly low as 2.52? Can't believe Clivealive didn't pick up on that, but then he's not as pedantic as I am for ensuring things are correct.
IF it seriously is 2.52 you need to be insisting on urgent treatment. Especial as you have neurological symptoms. (Every other day until symptoms no longer improve) although even the worst doctor in the world (ie. My old doc) would have you on injections of it were that low.
I wish you all the best.
Please do confirm that B12 result to set my mind at rest?
Hi yes it is 2.52 that is what I've been told by the doctors receptionist. My best friend is a nurse and is saying I should be on injections and that I need to ask why they haven't given me them?
Oh hell yes, in my surgery 180 is the absolute bottom of the range. Oh wait, it depends on the measurement, is there a different measurement depending on country?
There probably is a different measure of of it over here. I think it's NG? I'm not happy with my breathing etc so I might ring nhs direct for medical advice, or ring doctors again to make them tell me exactly what is on that screen.
If your B12 result really is 2.52 ng I'm surprised that you're not in hospital.
Pernicious Anaemia (PA) can lead to low B12 levels. It is also possible to have PA or other causes of B12 deficiency with a B12 result that is within range and still have severe symptoms of B12 deficiency.
B12 Deficiency Symptoms
pernicious-anaemia-society.... See Checklist PDF on right of page. I ticked all my symptoms and then gave a copy to my GPs.
You mention Coeliac disease which can lead to B12 deficiency as it can affect the gut and can therefore lead to absorption problems . Coeliac disease is an auto-immune condition and sadly having one auto-immune condition can increase the chances of another one developing. PA is an auto-immune condition.
If you are not receiving B12 treatment with such a low b12 result, you could be at risk of developing permanent neurological problems including spinal damage.
Please think about contacting PAS soon. I feel very concerned on your behalf.
UK B12 documents
I would suggest you read the following documents about treatment and diagnosis of b12 deficiency including PA. If your brain is too foggy then try to find a family member or supportive friend who can read them.
UK GPs will hopefully pay attention to BMJ articles. This one emphasises the need to treat people who are symptomatic for B12 deficiency, to prevent neuro damage, even if B12 is within normal range.
BSH Cobalamin and Folate Guidelines
Outlines treatment and diagnosis of b12 deficiency including PA, also deals with folate deficiency. Cobalamin is the scientific name for B12.
There's a useful summary of B12 documents in third pinned post on this forum.
Blood tests
You are receiving treatment for folate deficiency.
I have read that it is very important for any co-existing b12 deficiency to be treated if having folate treatment. See Management section in next link. patient.info/doctor/folate-... Might be worth showing link to your nurse friend.
Have you got blood results for ferritin and full blood count (FBC)?
I've just got in from work and read your reply, wow thank you so much for all of this help, this is wonderful, I will be having a read over the next week. I'm working this weekend and next week but off next weekend so can carch up on all of the advice.
What I forgot to add is that the flowchart I mentioned in above post makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody (IFA) test and start initial B12 treatment . This applies whether B12 is low or within range.
IFA test can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA result is negative. This is called Antibody Negative Pernicious Anaemia and is mentioned on the flowchart and in BSH Cobalamin and Folate Guidelines.
If you get a copy of your B12 result you can see if there is a note from the lab who carried out test recommending an IFA test. Patients are entitled to ask for copies of test results. There will usually be a small charge per sheet and it can take a few days for copies to be ready. GP surgery can only refuse if they believe that giving results to a patient could cause a patient harm. You may need to hand in a formal written request for copies.
Some surgeries have online access to a summary of results/records but this is only a summary and may not have all the info required. My personal preference is for paper copies.
You also mention Restless Legs. There is a Restless Legs forum on HU if you search the list of communities.
I have read that Restless Legs can be associated with iron deficiency. Have you got a ferritin result or other iron results?
RLS can also be associated with B12 deficiency and sometimes with lifestyle.
I have RLS too, although thankfully for me the symptoms are very mild. I was told by a neurologist to cut out caffeine eg no coffee, no tea, no chocolate.
"I take 3 or 4 pramipexole and 2 codeine"
Some drugs can be associated with folate deficiency and B12 deficiency. I think RLS can be a side effect of some drugs.
If your B12 result is 2.52 then I don't know how you are able to work. I think a lot of people would be bed-bound with a level that low.
B12 blogs
Martyn Hooper's blog has stories about how PAS supports its members.
Thank you so much for the fabulous wealth of information about this. I will definitely go to my doctors surgery and request all the information on the blood tests from the prior week. At no point has anybody, ie a doctor, sat me down to explain what is happening to my body and it's functions, I just been given ferrous fumerate (iron) and folic acid to take with little to no explanation and I don't think this is right at all. I was told over a phone call... By the receptionist !!
I'm going to try and get all the information available so I can do my homework and I will keep you posted. 👌 🤘
Sometimes when people update older threads, it can get missed by forum members. Sometimes it's better to start a new thread with the update and include a link to older thread.
"will definitely go to my doctors surgery and request all the information on the blood tests from the prior week.2
As I mentioned above, you may need to hand in a signed formal written request for copies rather than a verbal request. GPs have to agree to giving out copies so might take a few days for copies to be done. I used to pay 50p -£1 per A4 sheet and I think maximum amount that can be charged is £10.
Some people on the forum get a complete set of medical notes, think maximum charge in England is £50. Can be very illuminating to see what has been written about a patient in the past. It's not uncommon for people with b12 deficiency to be labelled with hypochondria, depression, psychosomatic problems, ME/CFS.
"At no point has anybody, ie a doctor, sat me down to explain what is happening to my body and it's functions"
If you join PAS, they should be able to tell you more about PA and B12 deficiency. I think it's easier for them to intervene to help people with a confirmed diagnosis of PA but at the very least they should be able to point you to useful info. PAS membership costs £20 a year , there is more than one category of PAS membership.
PAS members have access to details of PAS support groups. There are several in UK. Not every PAS member has a confirmed diagnosis of PA partly due to difficulties in getting a diagnosis. PAS support groups can be a valuable source of info on helpful GPs etc.
More B12 info in pinned posts on this forum. There is a summary of B12 documents that I recommend reading, in third pinned post.
If your GP shows some interest in finding out more then they might like to know that there is a section on PAS website for health professionals. Health professionals can join PAS as associate members for free.
I do hope your GP will try to find out what is causing your low B12 result. It is possible for someone to have more than one cause of B12 deficiency at the same time.
If you are symptomatic for B12 deficiency and I assume that if your B12 is 2.52 ng you must be showing symptoms, there is a window of opportunity of treatment before symptoms risk becoming permanent.
For patients with b12 deficiency symptoms including neurological symptoms, GPs should seek advice from a haematologist.
Might also be worth you reading NICE guidelines for Coeliac disease below.Have you ever had an endoscopy?
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Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
thanks
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