PA AND THE WORK PLACE

[niece13]

I was diagnosed with pernicious anemia 19 months ago and have to have an injection every 12 weeks, i had my last one a week ago. In may I was so stressed at work my doctor signed me off for 4 weeks, since having my injection I feel 100 per cent, I only ever have about 6 hours sleep every night. I'm really worried that in a few weeks time I'm going to start heading downhill again and it feels like no one understands as there are are 2 other people in my work place with PA and it doesn't affect them like it does me. Can you give me some advice on what I should do.

[clivealive Forum Support]

Are you in the UK niece13 ?

If you are and you have/had neurological symptoms, you should have had loading doses every other day until there was no further improvement and then your "maintenance" injections should be every eight weeks not twelve. It may be that you need to go back to your doctor and ask either to go back on loading doses or at least increase the frequency

Have you had your Folate tested recently? Folate and B12 help your iron to make red blood cells amongst other functions.

Do you have a personnel department at your workplace? Are you seeking to reduce your workload because of your P.A.? Have you explained your problem to your superiors?

Hopefully if you can get more frequent injections your ability at work won't be affected.

I'm not a medically trained person but I've had P.A for over 45 years and I was very fortunate that my firm was very understanding in letting me "disappear" every fourth Tuesday at 10.30am to have my cyanocobamalin B12 injection at my local surgery.

I wish you well - get that folate checked out.

[Gambit62 Administrator]

suggest that you join the PAS and look through their library - they have some materials in there that you can share with your employer and explain how B12 absorption problems can affect your ability to work.

In the mean time suggest that you keep a symptoms diary and record when symptoms start returning so that you have something to support you if you need to go back to your GP for more frequent injections

pernicious-anaemia-society....

pernicious-anaemia-society....

[fbirder]

Are you a member of the PAS? If you are you can get great advice on PA and the workplace.

[Sleepybunny]

Hi,

I've assumed you're in UK, patterns of B12 treatment vary from country to country.

Like others I'd suggest joining PAS. it's based in UK but has members from around world.

PAS Membership

pernicious-anaemia-society....

PAS support groups

pernicious-anaemia-society....

There are several PAS support groups in UK. May be a source of support about work issues.

"an injection every 12 weeks"

clivealive mentions the UK treatment regime for those with b12 deficiency with neuro symptoms.

If you're in UK, having maintenance injections every 3 months suggests you are on the treatment regime for those without neuro symptoms.

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

Lists of B12 Deficiency Symptoms

pernicious-anaemia-society....

I gave my GP a copy of PAS checklist with all my symptoms ticked plus I added any symptoms not on list especially any neuro symptoms.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

UK B12 treatment info

This can be found in

1) BNF (British National Formulary) Chapter 9 Section 1.2

UK GPs are very likely to have a copy of this sitting on their desk or bookshelf. it's also possible to get own copy from good bookshop or popular internet retailer.

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

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

2) BSH Cobalamin and Folate Guidelines

I'd recommend reading whole document if in UK. Treatment info is about a quarter through document. Some UK GPs may be unaware of this document, I gave my GPs a copy.

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Proof of Diagnosis

Do you have copies of letter, test results, medical records that confirm PA diagnosis? I'm asking because some people on forum have had their injections stopped at some point in their lives and it's much easier in my opinion to argue for reinstatement of injections with written evidence of PA diagnosis. PA treatment is for life.

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

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

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

If you have problems at work then proof of diagnosis might be important .

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of PAS. Up to date with current UK guidelines. I gave my GPs a copy of this.

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

I could recognise aspects of my experience in the case studies.

"Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

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

B12 blogs

May be stories that are relevant to you...

Martyn Hooper's blog

martynhooper.com/

There is another blog about b12 issues on "B12 Deficiency Info" website

Unhappy with treatment?

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Person who runs above website can be contacted by e-mail. Details on website.

CAB

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and treatment

hdapatientcaretrust.com/

Occupational Health

gov.uk/government/collectio...

Other info on occupational health available online.

May be worth joining a union if you think there may be problems at work.

Other b12 info

1) Pinned posts on this forum. I found fbirder 's summary of B12 documents helpful to read. Link to summary in third pinned post.

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

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

[FKtheNHS17]

And if the above suggestions dont work and your doctors wont listen then go online and buy B12 patches, B12 dissolvable strips (on tongue), sublingual drops for under tongue ......or failing all those you can buy your own B12 to self inject. But i would try the things above first. You can get the other items off Amazon or a website called Biovea.

As everyone is different you may find having a patch on every week (8 weeks after your normal injection) in the run up to the 12 weeks injection.

Or try Active Iron capsules (boots pharmacy) they are digested in your intestine - not your stomach. I discovered these 3 months ago and have noticed my energy levels are improving.

You should also try taking Echinacea tablets. Some people experience a flu like illness when B12 is very low. Due to PA/B12 deficiency causing low immunity. You need to top up yourself if you can. I buy my tablets from Wilkos. They are called cold and flu tablets and have Echinacea in. Sort me out really quickly.

Sadly you will have to try a few things to find what works for you.

Good luck

[niece13]

Thank you all for the replies I will look into them all and yes I am in the UK.