Can my extreme body and muscle pain also be due to Pernicious Anaemia and B12 deficiency?

[Garrillee]

Thanks for all the informative replies regarding the availability of Schilling test. I have now requested some of the recommended tests from my GP.

[Nackapan]

I think so.The horrid fatigue makes everything ache.

Also seems to have no patterns .

Some days I csn handle a shopping trolley abd queue gir a short time.

Other days it hurts to sit st the table to eat ??

Done days putting washing out no big deal

Other days ache badly abd serns a mammoth task .

Never ached kije thus before.

My job was very physical too.

[Hamayeshguy in reply to Nackapan]

For how long you are injecting and what was symptoms before injection.

[Hamayeshguy]

I have the same problems. I think depends on to what extend you were physically active during b12 deficiency. In my case I was walking fast alot and due to that my stomach muscles actually were the first symptom and feeling like stab wound. And my back muscles recently sore like a spine is crashed. I used to live in very stressful environment and I think too much chronic stress depleted B12 more than it was supposed to get depleted. And recently I found my iron is also in it's lowest normal range. But after injection lots of symptoms was new including severe muscle weakness extreme fatigue and muscle pain. It take time to get healed.

[Parlay]

With one autoimmune condition sometimes comes another so maybe you should consider rheumatoid arthritis or Sjögren’s.

[Garrillee in reply to Parlay]

I wonder if my osteoarthritis has something to do with it

[BLC123]

Hi there. What is your ferritin levels ?

[Garrillee in reply to BLC123]

I am very new to this condition and so I don't know what Ferritin actually is. I am now in the process of acquiring more information

[Sleepybunny in reply to Garrillee]

Ferritin is a stored form of iron in the body.

Blood tests linked to B12 deficiency

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

[SigNi]

Hi - I have the same & am trying to figure it out. I have a lot of deficiencies & am adding supplements one at a time and waiting to see what the effect is. At the same time trying to discover what is causing the depletion. I believe the pain is coming from inflammation as I had great temporary relief from both pain and fatigue on a ten day trial of prednisone. My bloodwork hints at a gut problem. I also get relief when I can manage to cut out carbs (including sugars) for an extended period. Hope this helps - wishing you some relief.

[zxcvbnp]

I have so much muscle and joint pain… extreme tiredness…poor sleep…I’ve asked my doc for b12.. ferritin .. HbA1c …

I do hope it is B12… at least there’s a chance of fixing it!!!!

[Hamayeshguy in reply to zxcvbnp]

After one year I have still the same problem. But my ferritin was dropped recently after almost five months injection. I have developed many weird symptoms like ultra extreme fatigue and severe muscle weakness. Sometimes I can't even go for shopping. Muscle pain. I have no idea what is the cause but destroying me physically and mentally. Blurry vision that I have is so bad. When I watch my phone for like 10 minutes and look around after that I see everything double but after some minutes it get back to normal. I have phantom smell problem. I'm going to give a try to hydroxy and methyl cobalamin to see dies it work for me. after seeing my internist doctor and find out ferritin issue I'm gonna ask for iron pills too.

[Garrillee in reply to zxcvbnp]

The same problem

[Sleepybunny]

Hi,

Before I finally started B12 treatment, I had constant pain in most muscles, joints and bones.

It wasn't agonising but constant and energy draining.

I left links to Symptoms lists for B12 deficiency on your other thread.

Have you had folate and iron levels checked and also Vitamin D besides B12?

If there are auto immune conditions in the family, have you also been tested for thyroid disease which can lead to joint pain.

Thyroid tests

thyroiduk.org/getting-a-dia...

[Hamayeshguy in reply to Sleepybunny]

I sweat alot can it be related to thyroid or low ferritin can also causes sweating.

[Garrillee in reply to Sleepybunny]

Than I you for your advice I have to explore it because the pain is awful

[zxcvbnp in reply to Sleepybunny]

Hi… I have been taking B12 cos I thought that was my problem. My iron and ferritin and Vit D are ok my B12 is high. However it doesn’t show active B12? Maybe I’m not absorbing the B12?

[Sleepybunny in reply to zxcvbnp]

Hi,

NHS GPs don't often order an Active B12 test (also known as Holotranscobalamin/HoloTC).

Usually if they suspect a patient has B12 deficiency they will order a serum B12 test also known as a Total B12 test.

Link about "What to do next" if B12 deficiency suspected or newly diagnosed

b12deficiency.info/what-to-...

If you suspect you have PA then worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number for PAS members.

Testing for PA

pernicious-anaemia-society....

Lots of useful leaflets on PAS website.

pernicious-anaemia-society....

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in book is out of date. See BNF link below for up to date info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Your local library service may have copies of these books.

UK B12 documents

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Summary of above document

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

Low dose cyanocobalamin tablets are sometimes prescribed for dietary B12 deficiency.

BNF Cyanocobalamin

bnf.nice.org.uk/drug/cyanoc...

Severe dietary B12 deficiency would usually be treated with B12 injections.

BNF Hydroxycobalamin

bnf.nice.org.uk/drug/hydrox...

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/anaemia-b12...

cks.nice.org.uk/topics/anae...

Each CCG/Health Board in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down the guidelines for your CCG/Health Board and comparing them with BSH, NICE CKS and BNF links.

I have written some detailed replies on other threads with info on symptoms and causes of B12 deficiency, more B12 books, B12 websites, B12 articles and a few hints on dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained just someone who suffered for years from unrecognised B12 deficiency.

As you've not posted before, maybe helpful for you to start your own thread on this forum with your story. Click on blue box with pencil icon at top of screen if you want to start your own thread.