Happy Christmas from Nick

[nmdwilson]

Hello there, Happy Christmas from Nick. Diagnosed with PA, 2 weeks ago after work health screen suggested i have blood test. Symptoms going on for years; pins & needles, sore mouth hair loss, vitligo. Got injections soon, shame didn't get diagnosis earlier, will see what happens.

[clivealive Forum Support]

Hi nmdwilson are you in the U.K?

Do you know what your frequency of injections is going to be?

Was your Folate level tested?

Be assured there is life after P.A. as I've had it for 46 years and I'm still "clivealive" and over 75

It's really down to getting the right and sufficient treatment.

Just a note of "warning" it is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are going to be injected with 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 there are others on here who will be able to give you good advice and answer any questions you have.

I wish you well and hope you have a good holiday and a much improved health in 2018.

[nmdwilson in reply to clivealive]

Thanks Clive for your encouragement

[Sleepybunny]

Hi,

I hope you will soon see some improvement now you have a diagnosis and treatment.

Some links that may be of use

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS members can access details of PAS support groups. Membership costs £20 for a year.

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

B12d.org

b12d.org/

B12 Books I found useful

"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.

UK B12 documents

If you're in UK, I'd recommend reading all of them. PA and B12 Deficiency are not always as well understood by doctors as they could be.

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...

Do you have any neuro symptoms eg tingling, pins and needles, memory problems, balance issues, tremors etc ?

pernicious-anaemia-society.... See Checklist PDf on right of page.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

If yes, be aware that the recommended UK treatment for those with B12 deficiency with neuro symptoms is more intensive

B12 deficiency with neuro symptoms

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.

B12 Deficiency without neuro symptoms

6 B12 loading jabs over 2 weeks then a jab every 3 months

Quite a few on this forum with neuro symptoms struggle to get correct level of treatment so fingers crossed that you do, if you have neuro symptoms.

Untreated or under treated B12 deficiency can lead to further deterioration including spinal problems.

PAS news item on Neuro Consequences of PA

pernicious-anaemia-society....

B12 blogs

May be relevant stories on these.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info website

b12deficiency.info/blog/

Link about writing letters to Doctors about B12 deficiency (UK info)

b12deficiency.info/b12-writ...

PA Diagnosis

Might be worth getting written proof of your diagnosis eg copies of medical records as some on forum with a PA diagnosis have had injections stopped and when they queried this with GP, were told there was no record of a PA diagnosis.

Access to medical records (England)

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

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

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

Thyroid disease

Have you ever had thyroid tests?

Quite a few on this forum have both B12 deficiency/PA and thyroid problems.

In UK, GPs sometimes only test TSH which won't give a full picture of thyroid function. ther are other thyroid tests as well as TSH.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/testin...

There is a very active Thyroid UK forum on HU if you have any thyroid results.

More b12 info in pinned posts including a useful summary of mainly UK B12 documents.

I am not medically trained.