B12 and Vit D

[Colb53]

Hi there! I started B12 injections in January and have been having 3 monthly injections after 6 initial loading doses. I've been struggling with extreme fatigue and unable to take a deep breath. Had results of blood tests and ECG this morning and been put on Vitamin D tablets daily for life. Something to do with calcium absorption. I just wondered if anyone else has had same prognosis of B12 and Vit D? Everything else thankfully ok including folate. I'm hoping to feel better soon x

[Sleepybunny]

Hi,

"been having 3 monthly injections after 6 initial loading doses"

Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, memory problems, balance issues plus others?

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

If yes to neuro symptoms....

in UK, treatment for B12 deficiency with neuro symptoms is a loading injection every other day for as long as symptoms continue to get better (could mean loading for several weeks even months) then it's an injection every 2 months.

I believe you mentioned seeing a neurologist in an older thread so I assume you have some neuro symptoms.

People not on correct B12 treatment regime, may continue to deteriorate.

Info on UK B12 treatment can be found in

1) BNF British National Formulary Chapter 9 Section 1.2

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

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

2) BSH Cobalamin and Folate Guidelines

Treatment info is about a quarter through document.

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

Link about writing letters about B12 Deficiency to GPs

b12deficiency.info/b12-writ...

Point 1 is about undertreatment of neuro symptoms

Do you know why you are B12 deficient?

Risk factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you had tests for PA (Pernicious Anaemia)?

This would usually be an IFA (Intrinsic Factor Antibody) test. IFA test is not always reliable and it is still possible to have PA even if IFA test result is negative (called Antibody Negative PA)

Flowchart below gives UK guidelines for diagnosis of PA and B12 deficiency.

stichtingb12tekort.nl/weten...

My experience in UK has been that some GPs are unaware of the BSH Cobalamin and Folate Guidelines. I gave my Gps a copy.

PAS (Pernicious Anaemia Society)

If you have a diagnosis of, or suspect PA (Pernicious Anaemia) then it may be worth joining PAS.

PAS are helpful and sympathetic but busy and may not have resources to help non-members. They can pass on useful info and in some cases can intervene on behalf of members.

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left

B12 blogs

Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

Also an interesting blog on "B12 deficiency Info" website

B12 books

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

Martyn Hooper is chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of MIsdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

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

"Everything else thankfully ok including folate"

Do you get copies of all your blood test results? I learnt to after being told everything was normal and then finding abnormal/borderline results on the copies.

Access to Medical records (UK info)

nhs.uk/NHSEngland/thenhs/re...

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

I am not medically trained just someone who has struggled to get a diagnosis.

[Colb53 in reply to Sleepybunny]

Thank you Sleepybunny for your comprehensive reply. Yes I did have neuro symptoms - I had a tremor in my left hand which seems to have gone since having the injections. The breathing issue started after the 3rd loading injection and hasn't really gone away and seems to be getting worse - I think my stress at work is exacerbating it though. I haven't had a copy of my latest blood test results but will ask so I can check the folate for myself. The only thing my GP picked up was the vitamin D deficiency and that it is likely I will be on tablets for life. She seemed confident this is the reason for the extreme fatigue and for me struggling generally. I've been on the tablets since Tuesday and have spent almost every other day in bed all day - so I can work one day and then pay the next with exhaustion. I've not pushed for more frequent B12 injections as at this stage I am grateful to be receiving treatment at all. The head of practice makes a point of telling me he doesn't agree I should be on it although my GP seems to be ok. They told me they don't test for PA so I don't know why I am b12 deficient and just been put straight on injections.

Are you suggesting that the vit D diagnosis is B12 related or a red herring?

Thanks

[Sleepybunny in reply to Colb53]

"Are you suggesting that the vit D diagnosis is B12 related or a red herring? "

Hi,

No, as Vitamin D deficiency can cause multiple symptoms including pain.

patient.info/health/vitamin...

What I was trying to say was that if you have neurological symptoms you probably need the B12 treatment regime for those with neuro symptoms.

See BNF links in post above.

Have you had your ferritin levels checked? ferritin is a stored form of iron in the body. Iron deficiency can cause fatigue and shortness of breath and other symptoms.

patient.info/doctor/iron-de...

"They told me they don't test for PA "

I'm a bit shocked by this comment.

What does your GP think has caused your B12 deficiency?

Do you have any of the symptoms on the PAS Symptoms Checklist?

I gave my GPs a copy of it with all my symptoms ticked plus a copy of BSH Cobalamin and Folate Guidelines and a copy of Martyn Hooper's book ""What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

I think GPs should work with their patients to find the causes of B12 deficiency. It's really important in my opinion to know why a person is B12 deficient.

Some causes of B12 deficiency require lifelong treatment with B12. PA requires lifelong treatment.

If you look at this flowchart from the BSH Cobalamin and Folate Guidelines, it makes it clear that In UK ,people who are symptomatic for B12 deficiency should have an IFA Intrinsic Factor Antibody test (assuming diet has been excluded as a cause).

stichtingb12tekort.nl/weten...

IFA test is not always reliable and it is possible to still have PA even if IFA test result is negative, Flowchart above mentions Antibody negative PA.

Some UK GPs may not have read BSH Cobalamin and Folate Guidelines. I'd recommend you read the whole document.

As I said in other post,if you think PA is a possibility , may be worth joining PAS.