Pernicious Anaemia Society
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Newly Diagnosed & In need of asvice

I recently been diagnosed with pernicious anemia in March this year, after feeling not myself for a good few months and my hair drastically thinning I decided to go Drs and ask for blood tests. I actually thought I may of had a problem with my thyroid as this runs in my mother’s side (Mom, nan, aunty all have thyroid issues).

My tsl level was 1.12 (mu/l) and they said that was normal. Dr ran other tests and my b12 came back as 92 (ng/L) and serum folate 10.4 (ug/L). With this she then tested me for parietal cell antibodies which came back positive so I had a loading dose of six injections in April and then was told every 3 months after continuing for life and was left at that.

Few weeks after the loading doses I felt so much better, confusion had gone, my sever constipation which I had for many years was gone (sorry tmi probably) aches in wrists gone, the only negative was from the injections was a lot of spots and a sandy paper feeling to skin but now only after six weeks since last injection I am starting to feel tired again, wrist is starting to ache and things are slowing up in toilet movements too. Do you think I should go back to Drs and ask for some more regular injections or just see how I go?

Thanks for any advice ☺️

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Hi Joleen1983 if you are in the UK 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.

Although your Folate level was mid range it is also important that it 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

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

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Hi,

Are you in UK? I'm asking because patterns of b12 treatment vary from country to country.

If you're in UK, I'd suggest reading following documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

"had a loading dose of six injections in April and then was told every 3 months after "

1) Recommended UK treatment for B12 deficiency without neuro symptoms is .....

6 B12 loading jabs then a jab every 3 months

2) Recommended UK treatment for B12 deficiency with neuro symptoms is ....

A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) then a jab every 2 months

Do you have any neurological symptoms eg tingling, pins and needles, tremors, memory problems, balance issues, tinnitus plus other possible neuro symptoms?

If yes, then in UK, my understanding (I'm not medically trained) is that the second pattern of treatment should be given. See BNF, NICE CKS and BSH Cobalamin and Folate Guidelines links for more info on UK B12 treatment.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

"she then tested me for parietal cell antibodies which came back positive"

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and 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 with lots of case studies.

"diagnosed with pernicious anemia in March"

PAS (Pernicious Anaemia Society)

Based in Wales, UK but have members from other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (USA website)

b12awareness.org/

UK B12 Blogs

There may be stories relevant to you on these blogs.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

"My tsl level was 1.12 (mu/l) and they said that was normal"

In UK , doctors sometimes only test TSH. Only testing TSH will not give a full picture of thyroid function, there are other possible thyroid tests.

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

Might be worth putting Thyroid results on Thyroid UK forum on HU.

Other conditions

PA is an auto-immune disease. Having auto-immune diseases in family may increase chances of developing further auto-immune conditions.

Has your doctor excluded the possibility of other auto-immune conditions eg Coeliac disease (spelt Celiac in USA) , Diabetes etc

Coeliac UK website

coeliac.org.uk/home/

More B12 info in pinned posts on this forum.

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Thanks for the advice, looks like I have a wee bit of reading to be getting on with ☺️

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