First post - B12 & leg cramps - Pernicious Anaemi...

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First post - B12 & leg cramps

gabby57 profile image
7 Replies

I'd like some advice for my other half please. He's just had a blood test to investigate night cramps, insomnia, forgetfulness & pale skin among others! GP has prescribed Vit D, which he'd been taking for a while anyway, but wouldn't do anything about the low B12 as it's "within range". Said he could take some but it would be a waste of money.

What would you suggest? Should he take something, and if so, in what form & how long should it take to work?

Serum ferritin - 392 ug/L (22.00 - 322.00)

Serum total 25-OH vit D level - 40 nmol/L (>51.00)

Serum TSH level - 3.3 mU/L (0.55-4.80)

Serum folate - 14.2 ug/L (>3.40)

Serum vitamin B12 - 330 ng/L (211.00-911. OO)

Serum iron level 12.2 umol/L (12.50 -32.20)

Serum transferrin 2.12 g/L (2.00 - 3.60)

Transferrin saturation index 23% (15.00-50.00%)

Serum C reactive protein level - <5 mg/L (0.00-5.00)

Full Blood Count - (AWB482) - No Action

Haemoglobin estimation 132 g/L (130-180)

Platelet count 136 x10A9/L (150.00-450.00)

Red blood cell (RBC) count 4.11 x10A12/L (4.30 - 5.80)

Haematocrit 0.393 L/L (0.39 - 0.50)

Mean corpuscular volume (MCV) 95 fL (79.00-101.OO)

Mean corpusc. haemoglobin(MCH) 32 pg (27.00 - 32.00)

Total white cell count 4.5 x10A9/L (4.00 - 11.00)

Neutrophil count 2.1 x10A9/L (2.00 - 8.00)

Lymphocyte count 1.7 x10A9/L (0.50 - 4.50)

Monocyte count 0.3 x10A9/L (0.20 - 1.20)

Eosinophil count 0.3 x10A9/L (0.10 - 0.70)

Basophil count 0 x10A9/L (0.00 - 0.20)

Thanks in advance for any comments.

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clivealive profile image
clivealiveForum Support

Hi gabby57 as long as he doesn't have abdorption problems with his stomach can you increase the B12 rich foods in your "other half's" diet? These include red meats, fish, seafood, eggs, poultry and dairy produce.

gabby57 profile image
gabby57 in reply to clivealive

Hi clivealive, his diet is good on all those really, could increase the red meat a bit though. I don't think he'd complain at having more steak! :)

Johnathan profile image
Johnathan

Night cramps are often caused by insufficient magnesium intake compared to calcium. They are taken up by the same receptors and a high calcium intake can crowd out magnesium. There is an excellent book on this subject called "The Magnesium Miracle" by Carolyne Dean MD. If he/she supplements with magnesium do NOT use magnesium oxide as it will go straight through. Magnesium citrate works well. Magnesium deficiency can cause a host of other problems. It is worth reading the book and checking out of it is likely to help your other half.

Sleepybunny profile image
Sleepybunny

Hi Gabby57,

Are you in UK? I'm asking because patterns of B12 treatment vary from country to country.

Some info below may not apply if you're not in UK.

Who gets PA (Pernicious Anaemia) and Vitamin B12 deficiency?

Does he have any risk factors?

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Is your other half symptomatic for B12 deficiency?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

UK B12 Documents

BSH Cobalamin and Folate Guidelines

Gives guidance to UK doctors on treatment and diagnosis of B12 deficiency and folate deficiency

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA test (Intrinsic Factor Antibody) 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 test result is negative (called Antibody Negative Pernicious Anaemia).

BMJ B12 article

Emphasises the need to treat patients who are symptomatic for B12 deficiency to avoid neurological damage, even if tests do not indicate an obvious deficiency.

bmj.com/content/349/bmj.g5226

BNF British National Formulary Chapter 9 Section 1.2

Info on UK treatment for B12 deficiency. UK GPs are likely to have a copy on their desk or bookshelf.

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

Info on UK B12 treatment can also be found in BSH Cobalamin guidelines, about a quarter through document.

Blood tests

I did notice that his MCH was at the upper limit of the range.

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

Normal range B12

b12deficiency.info/b12-writ...

B12 websites

1) PAS

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

b12deficiency.info/

Lots of B12 info on above website

b12d.org/

B12 books

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

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

"Could it Be B12" by Sally Pacholok and JJ. Stuart

Very comprehensive book about B12 deficiency with lots of case studies.

B12 blogs

b12deficiency.info/blog/

martynhooper.com/

Conditions with overlapping symptoms

Some of the symptoms of B12 deficiency can overlap with those of other medical conditions eg Coeliac disease, Thyroid disease plus others.

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

thyroiduk.org.uk/tuk/index....

Link discussing what to do next if B12 deficiency is suspected

b12deficiency.info/what-to-...

I am not a medic , just a person who has struggled to get a diagnosis.

gabby57 profile image
gabby57

clivealive Johnathan Sleepybunny Thank you - so much info & so much to research!

He's already started on mag. citrate, so that's a start.

Yes, we're in the UK. Diet should be OK I think as we eat meat, fish & dairy. Genetics - well, his father was diagnosed with PA many years ago. Hubby is 65, has skin problems & previous H. pylori & GERD diagnoses. Fogs - didn't really recognise it, but the part about watching something on TV & forgetting it the next day - so true, & so often!

Hmm. Many of his symptoms could be due to Vit D deficiency, I think, for which the GP gave him daily 3200iu tablets. Due for a retest in 2 months, so I'm not sure whether to just wait & see how he's doing then, supplement B12 now, or get some private blood tests done.

Thanks for your comments, everyone.

Sleepybunny profile image
Sleepybunny

Hi,

"Genetics - well, his father was diagnosed with PA many years ago"

Is his GP aware that his dad had PA? PA can run in families.

I'd suggest contacting the PAS (Pernicious Anaemia Society) who may be able to point you to info about PA and genetics. PAS tel no in my post above, may take a few days to get a response.

Link about writing letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

"supplement B12 now,"

Supplementing B12 without a diagnosis can make it extremely difficult to get a diagnosis. I speak from personal experience. See below link.

b12deficiency.info/b12-test...

Self treatment for me was an absolute last resort when I had exhausted all possibilities of NHS B12 treatment

Serum ferritin - 392 ug/L (22.00 - 322.00)

His ferritin level appears to be high. What did GP say about this?

Is he on iron supplements?

Has he ever has a set of iron studies tests?

labtestsonline.org.uk/under...

gabby57 profile image
gabby57 in reply to Sleepybunny

Hi Sleepybunny , no, he didn't tell the GP because it was only when we read about the genetic link that he remembered! Well, it was some 40 years ago. He did ask about the ferritin though, & the GP just said he wouldn't worry unless it was over 1,000. Not on iron supplements, but he has been eating liver every week - we'll swap that for steak now & see what the tests reveal in a few weeks.

You're right about self treatment, we've ruled that out for now. He's taking magnesium tablets every day & the cramping isn't as bad, so we'll keep reading up on PA/B12 & see the GP better armed next time!

Thanks again for your help. We may be back..... :)

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