Exhausted

[chris-jones]

Hi was diagnosed with PA a few years ago and have 3 monthly B12 injections. I have asked if i can have them more often as I am constantly tired. I also have vit D deficiency. I was recently diagnosed with a yeast infection through the body. Is this common with this condition? I am constantly exhausted and find it difficult to work, but apparently I am fit to work. I cannot sit for long without falling asleep. my partner is a teacher and i catch every cough and cold she picks up. I take Vitamin D throughout the year, but nothing seems to remove the exhausted feeling I have day in; day out. Any advice on how to deal with this? PS I have a sun lamp, but doesn't seem to impact in anyway.

[clivealive Forum Support]

Hi chris-jones

If you have Pernicious Anaemia with neurological symptoms then you should be having your injections of hydroxocobamalin (at least) every eight weeks and not twelve.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even re-start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well

[wedgewood]

You have had good advice from clivealive .It really sounds as though you need more frequent B12 ( Hydroxocobalamin ) injections. It can be more than difficult to obtain these from your GP .I had to resort to self injecting . Do bear in mind this possibility . It only costs about £1.00 for an ampoule, 2 needles , a syringe and a swab , when purchased in bulk . B12 ampoules can be obtained from German online pharmacies , the rest from medical supply companies in UK . . So remember this if you draw a blank with your doctor . You can obtain all the information you need from this site . All the very best .

[Sleepybunny]

Hi,

Link about writing letters to GP about B12 deficiency.

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms

I've assumed you're in UK. I'd suggest reading following b12 articles/documents

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BNF British National Formulary Chapter 9 Section 1.2

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

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

UK GPs will have access to BNF, probably a copy on their desk.

There is a useful summary of mainly UK b12 documents in third pinned post on this forum.

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone] answerphone

As you have a confirmed diagnosis of PA, have you considered joining PAS? PAS can offer support and info on PA. In some cases they can intervene on behalf of PAS members who are struggling to get correct treatment.

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). 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.

B12 blogs

Martyn Hooper's blog about PA.

martynhooper.com/

Also an interesting blog about b12 issues on "B12 deficiency info" website.

b12deficiency.info/

I am not medically trained.