Will my sob ever go away?

[Misslissa3689]

Will my SOB ever go away? I have b12 282 never been tested for PA. Low ferritin and low d. Bed ridden for a month now. Symptoms for 2 years. I have a whole list of symptoms but sob is the worst!

[JanD236]

Sorry but what is SOB?

[Misslissa3689 in reply to JanD236]

Shortness of breath

[Nackapan in reply to Misslissa3689]

That hopefully will resolve when tour ferritin levels are higher. My ferritin level took s year to raise the level to 58 . I used to get very breathless before I reached this level.

[Misslissa3689 in reply to Nackapan]

My ferritin is not much lower than that. So I’m wondering if it’s the b12?

[Sleepybunny]

Hi,

I'm sorry that life is difficult for you.

From personal experience, I can tell you that it is possible to have severe B12 deficiency with results that are within normal range.

I'm assuming you're in UK.

Have you considered joining and talking to PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 in above link is about being symptomatic for B12 deficiency with an in range serum B12 result.

BSH Cobalamin and Folate Guidelines

UK document on treatment and diagnosis of B12 and folate deficiencies

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

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.

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BNF treatment info in book is out of date.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

BNF Hydroxycobalamin

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

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

Very comprehensive with lots of case studies.

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, B12 books, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.

[Misslissa3689 in reply to Sleepybunny]

I am actually in the US. Thanks you!

[Sleepybunny in reply to Misslissa3689]

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Article suggests ....

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.

3) Successful treatment should not be stopped

B12 Awareness (US website)

b12awareness.org/

Although PAS is based in UK, it has overseas members.