Help Understanding blood results and getting help from NHS

Hi,

I have been reading a lot of information regarding B12 deficiency since my doctor request blood tests for this but am having trouble understanding it all. Can someone suggest if I need to request any other tests or what I can do to get the NHS to take action as I feel so rubbish.

My thyroid test came back normal and so did my B12 and folate test, but when I requested to see my results my B12 is 206 and my Serum Folate is 5.3 and I believe this is low?

My symptoms include bad fatigue, dead legs, dizziness, loss of feeling in hands, brittle nails, loose bowels and I have suffered depression for the last year with no cause (this was treated with antidepressants and counselling although the councillor also agreed there was no obvious cause?

Any help would be appreciated before my next doctors appointment, I am going to ask if they will please still treat me for B12 deficiency although according to NHS guidelines I am in the normal range.

Thannks

14 Replies

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  • Hi... did you have a coeliac test?

  • Yes sorry forgot to mention this but they said that was normal also.

  • I've read that it is possible to still have Coeliac disease with a negative test result.

    coeliac.org.uk/coeliac-dise...

  • 206 is low enough to be B12 deficient, even though it's technically within range. The NHS guidelines are advised to diagnose based on symptoms as well as tests but sadly they do not always do this.

    My B12 level was 243 and I share many of your symptoms. My blood tests also showed macrocytosis so I put all these pieces of evidence together and have started to self-treat (I'm also waiting for a neurologist referral on NHS) for B12 deficiency. These B12 levels are not levels which a healthy adult would aspire to.

    Did anything else show up in your blood test? How were your folate levels?

  • My folate result is 5.3 and was told this was in the normal range.

    I was tested for thyroid and coeliac and told these were both ok I'm just not sure how to get the nhs to treat my b12 deficiency when my results are normal according to their guidelines.

  • Print out the NHS and BMJ guidelines which stipulate that symptoms, not test results, should be treated. They should trial B12 to see if it solves the problem. Depending on how good and up-to-speed your GP is on B12 deficiency and treatment guidelines, you might have a battle on your hands.

    Thanks to support and advice on this site and in the B12 Deficiency/PA group on Facebook I decided to take the treatment into my own hands and now self-inject-I've just had my 12th injection. I know it might be a bit of a journey with neurological symptoms but at least I've started.

    Try to talk to your GP. If that fails, self injecting is an option if you believe a B12 deficiency is causing your problems. There is lots of practical advice and moral support here if you do decide to take the self-injecting route.

  • My summary document - frankhollis.com/temp/Summar... - contains clickable links to the documents that Booksellercate recommends, aloing with extracts of the pertinant sections.

    You could always ask your doc to try you on a course of B12 injections. If it fixes your symptoms - everybody wins. If it doesn't then the NHS is out a few quid for ruling it out. A darn sight cheaper than a load more tests.

  • I forgot to mention that you can buy high dose sublingual lozenges online. Many start on 5000mcg methylcobalamin whilst organising/waiting for injections.

  • Just because they said your thyroid was normal doesn't mean it is. Doctors don't really understand the thyroid and the test results. Please post them on the thyroid uk forum with the ranges and members will interpret them for you. Some of your symptoms could be due to an underactive thyroid. Most thyroid patients end up with b12 deficiency due to low stomach acid. :-)

  • Thanks I will ask for my thyroid results. The trouble is when I realised my b12 levels were low and this could be the answer to why I feel so exhausted I called the doctor to ask if they would give me b12 injections to see if my symptoms would improve they said because I was in the normal range! I have been taking b12 tablets from boots but the doctor told me prior to my test these would not be sufficient if I was deficient. So does anyone have any experience of convincing the nhs to prescribe b12 injections when test shows normal range? Thanks

  • lm pretty new to this also, my b12 was 140 and folate 5.9 under no circumstances whatsoever would my gp give any injections or even oral supplements you might be lucky and find a good gp but as you have probably seen on here so many people self inject l done the actve b12 test {home test} with medichecks and it came back at 66 which was even more confusing as there range was 28-167 have you had your ferritin and vit d checked if not ask for them to be done as most people here in the uk are vit d deficient and it certainly helped my symptoms low iron can also run along with b12 and levels need to be about 80 to properly uptake b12 hope this helps

  • My symptoms include bad fatigue, dead legs, dizziness, loss of feeling in hands, brittle nails, loose bowels

    I've just seen this bit. That could be caused by low stomach acid.

    Pernicious Anaemia is caused by your immune system attacking some cells in the stomach - Gastric Parietal Cells (GPCs). These have two main jobs...

    1. They make something called Intrinsic Factor (IF). This is a protein that attaches itself to B12 in the stomach. When the IF-B12 pair reach the ileum (the last bit of the small intestine) special cells grab hold of the IF and drag it, along with the B12, out of the gut and into the blood (where the IF releases the B12). No IF means no B12 absorption.

    2. They make hydrochloric acid. This does many things. It kills nasty bacteria you consume. It kills bacteria from the lower reaches of the gut from when they try to enter the stomach. It helps break down proteins (releasing the B12 attached to them). Without it (a condition called achlorhydria) these proteins can make it down the the lower gut where the bacteria have a huge party on the unexpected goodies that don't normally reach them. This causes bloating, flatulence and loose bowels.

    People have found that this can be fixed by taking something acidic with meals. Apple cider vinegar or lime juice are popular, natural, acids. There's something called betaine.HCl that releases hydrochloric acid when it hits the stomach, this seems to work well also.

  • Hi,

    I wonderd if you had had a full blood count (FBC). High MCV and high MCH on the FBC can indicate the possibility of macrocytosis. Macrocytosis (enlarged red blood cells ) sometimes occurs in people who are b12 deficient and/or folate deficient. Some people with iron deficiency develop microcytosis (small red blood cells). If a person has both iron and B12 deficiency, their red blood cells may appear to be "normal" size.

    patient.info/doctor/macrocy...

    labtestsonline.org.uk/under...

  • Worth asking for an h pylori test if you haven't had one.

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