Pernicious Anaemia Society
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Why am I so fatigued? I need a solution

Hi everyone I'm new here. I have had extreme exhaustion for many many years. Over the last 6 months my B12 has been low, with the most recent result being 122ng/L. Note that this was the first time my B12 had ever been tested. I was commenced on Cyanocobalamin 50Microgram tablets once daily. They are having no affect I may as well be taking smarties.

My symmtoms include:

pins and needles, burning sensations in my feet, fatigue, lethargy, very low mood, irritable, changes in my movemnet (clumsy).

I have also had my period since Novemeber 2016 which I thought would indicate a thyriod issue, my lastest results were 15 pmol/l, 1.52 mU/L, 5pmol/L. There are thyroid issues in both sides of my immediate family. I am lactose intolerant which I had put down to my swollen neck but it is also a sign of thyroid problems.

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Do you have the detailed results from your thyroid test? The unnamed numbers are not meaningful unless you know what they indicate (and lab range helps too, that's the range in brackets after the result). Your period problems could indeed be thyroid-related. What does your doctor say?

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Hi puncturedbicycle! Thanks for the response.

T3 - 5 Ref range ( 3.1-.6.8)

T4-15 Ref range(12-22)

TSh - 1.52 Ref range (0.46-4.2)

Folate 7.3, range is 3.9-26.8 ug/L

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Yes your B12 is very low . As you have been supplementing B12 orally , to no effect , you should be tested for Pernicious Anaemia, as it looks like an absorption problem . This means you can only benefit from B12 injections . You need to be tested for Intrinsic Factor antibodies . This test is only about 50% accurate . If you test positive , you definitely have PA , if negative you can still have PA . But your symptoms must be treated . Also PA and thyroid problems can often come together ( both auto-immune problems which seldom come singly ) Please go to see your doctor and ask him/her to refer to the latest treatment for Pernicious Anaemia . You need urgent treatment .

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Hi wedgewood I have an urgent appointment in the morning. Thanks for your advice its very helpful. I feel like I'm going round in circles. I am only 24 and I have had this problem for years but its only recently been flagged. If it's not treated I am frightened of the long term consequences. Have you any other advice I could say to my GP?

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Hi Maggie333. Sorry to hear that you're having so many problems.

If you put up a new post after your doctor's appointment we'll be able to advise further and provide information that will help if you're having trouble getting treatment from your GP.

Good luck 👍

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Hi Foggyme i never made it to the doctors today unfortunately. Could you reccomend other blood tests that would be applicable? My b12, folate and thyroid tests were done on Wednesday. Many thanks.

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Hi Maggie333. Going to make a new reply above...or you'll end up reading the equivalent of a skinny sausage 🙃

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There are medical reports that you can download and print out about diagnosis and treatment of Pernicious Anaemia . I havent got the references to hand , but I often see them on this forum . Perhaps you can trawl through to find them? I'm not good on doing stuff like that . You need these reports to take to your appointment . Many doctors do not have the information . It would be useful for you to be armed with this info . See if you can get in touch with one of the administrators/-- "foggyme " or " fbirder "who can give you the links to these references . I'm sorry that I haven't got them . Hope you can find them . I wish you all the best for your appointment .

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HI,

Are you In UK?

b12deficiency.info/what-to-...

Some of info below may not be applicable if you are elsewhere.

1) PAS website

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

Martyn Hooper's blog martynhooper.com/

2) B12 deficiency info website

b12deficiency.info/

3) b12d.org

b12d.org/

4) pinned posts on this forum. i found it helpful to read Fbirder's summary of UK B12 documents in third pinned post (last link in list).

5) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" By Martyn Hooper

6) Book "Could it Be B12" by Sally Pacholok and JJ Stuart

7) BSH Cobalamin and Folate Guidelines

UK b12 guidelines that came out in 2014. I'd recommend reading the whole document if you are UK based. Guidance on UK b12 treatment is about a quarter through document.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of b12 and Folate Deficiency" should be on page 3 of listed guidelines or put "cobalamin and folate guidelines" in search box

Next link is to a flowchart in BSh Cobalamin guidelines

stichtingb12tekort.nl/weten...

8) BMJ B12 article

bmj.com/content/349/bmj.g5226

9) BNF (British national formulary)

evidence.nhs.uk/formulary/b...

10) causes of b12 deficiency

b12deficiency.info/what-are...

11) Lists of b12 deficiency Symptoms

b12deficiency.info/signs-an...

pernicious-anaemia-society.... click on Symptoms Checklist

b12d.org/admin/healthcheck/...

12) Unhappy with treatment?

b12deficiency.info/b12-writ...

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment.

hdapatientcaretrust.com/

Blood tests

Do you get copies of all your blood tests? i learnt to after being told everything was normal and then finding abnormal results on copies.

In relation to B12 I look at b12, folate , ferritin and full blood count

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

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Hi Maggie33. Hello and welcome.

The first thing to say is that your B12 looks very low although you don't give the reference range so it's not easy to tell.

The second thing to say is that you have neurological symptoms so you should be receiving B12 injections? Oral supplements of B12 are not recommended for the treatment of B12 deficency when neurological symptoms are present. The dose is so low that you you could just as well take smarties! B12 levels need to come up quickly and injections are the only thing that will do this - and the only recommended treatment. Not many GP's know this.

At the end of this reply, I'm going to paste in some links to information that will tell you main things you need to know about B12 deficency (the first link is about not using oral supplements, as above). It's vital that you read this information so you know how how your GP should be diagnosing and treating you.

Many GP's are not well-informed about B12 deficency and have some very odd ideas which translate into patients failing to receive eithe any treatment or, indeed, inappropriate treatment.

I note that you have thyroid issues - please could you post your thyroid result on the thyroid forum - they're much better at thyroid so than we are so you'll get more knowledgable advice there.

However, just wondering if you have Hashimoto's thyroiditis? Or indeed any other autoimmune conditions in your family. If so, it's likely that you too could develop autoimmune conditions - pernicious aneamia being a possibility. So, blood tests...Ask your GP for

Anti-IF antibodies - test for pernicious anaemia. If it's postive you definately have PA. If it's negative it's only 50% accurate so,you could still have PA (your GP may not know this)

Full blood count (FBC) - to see if you have macrocytic anaemia, often (but not always) present in B12 / folate deficency and PA.

Ferritin - protein that binds iron for absorption into the body. Low ferritin can be indicative of iron deficency anaemia.

Vitamin D. People with B12 deficency most often have absorption problems so become deficient in other vitamins and minerals. Very common to have vitamin D deficency in the presence of B12 deficiency.

About the blood results you're waiting for: it's likely that your B12 level may have increased slightly because of the oral supplements you have taken and your GP may say that 'all okay now, back to normal, you don't need any more B12'. Wrong.

First - The golden rule with B12 deficency is treat the symptoms, not the blood results (not many GP's know that).

Second - and to put it in context - once a deficency exists (especially where neurological symptoms are present) B12 levels need to be 1000 or above for effective neurological repair to take place. Your GP may not know that). Mine usually run at 2000+. Incidentally, you would never get to these levels taking the 50mcg prescribed).

Another thing that it would be useful for you to know. GP's often say that blood results are normal when they're not. Bumping along at the bottom of the reference range is not good enough for some people. Always ask for copies of your blood results (you are entitled to these) and put them up in a new post, together with the reference ranges, and people here can help with interpretation.

Anyway Maggie333, this reply is just to get you started 🙃. Here come the links with more information. You may well have many more questions when you've finished reading so please put up new posts whenever you need to. And if you need more help getting treatment from your GP we can help,with advice about that.

I hasten to add that as you have neurological symtpoms you should be started on treatment with injections immediately (see the UKNEQAS B12 treatment alert in the links below - a good one to print and get your GP to read).

Good luck and let us know how it goes 👍

LINKS TO INFORMATION AND GUIDELINES

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Society Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten... (Methylmalonic Acid – MMA)

stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)

ncbi.nlm.nih.gov/pmc/articl... (No Superior Forms of Cobalamin)

👍

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As thoughtful and informative as ever 😊

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Why thank you Ndobbins 🙃🙃

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You are very welcome 😁

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