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Pernicious Anaemia Society
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Newbie

Newly diagnosed with PA which scared the life out of me on the last May bank holiday weekend, physical symptoms dizziness rapid heart beat, out of breath,nauseous.

I could deal with the physical symptoms but had a real feeling of impending doom which was frightening.

Took myself to A+E (ED) had blood tests and kept in overnight was going to get a blood transfusion because my count was so low,but consultant the next day suggested 6 shots of B12 over two weeks which I've had.

Now in the hands of my GP awaiting futher blood tests results.

Although I feel about 70% of my normal strength back, I still get light headed especially lying down in bed or when I turn on to my left hand side.

Just reaching out to those of you with similar experiences and who've been are further down the road in treatment and your journey.

Many thanks x

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Hi Odaat if it's any consolation I've had P.A. for 46 years and I'm still "clivealive" and over 77 years old.

Ask to have your Folate level checked as this helps to process the B12 you're having injected,

I wish you well

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Thanks for getting back to me Clivealive,the hospital put me on folic tablets 5mg.

Do you get B12 injections regularly?

As I've read so my different opinions my GP seemed to be saying I probably need them every three months and do you take folic every day?

Sorry for all the questions but you've had a lot of experience and that's good to know.

Wishing you every blessing on your journey.

Thanks

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5 mg of folic acid is more than 10 times the recommended dose. So it’s normally prescribed just to get low levels up to normal. After that most people do OK with the folate in food (leafy, green veg, seeds, nuts pulses) along with a supplement of 400 mcg of folic acid a day.

Many people do OK with an injection every three months. Others need them more frequently. Keep a diary of your symptoms (try to score them 1 to 10) to see if they get worse before injections.

Has your doc tested you for peripheral neuropathy (looking for tingling/numbness in your toes)? If you have that then you should be on injections every 8 weeks.

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Thanks for reply fbirder,just a few weeks into this so I'm sure you know it was a bit scary especially googling symptoms!

Have a great day.

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Yes, my doctor told me back in 1972 that I only had two years to live unless I either ate raw liver three times a day of had B12 injections for the rest of my life.

I love baked liver with onions and gravy but didn't fancy it raw so I opted for the injections.

The six "loading doses" of B12 which you've had are to massively boost your levels and thereafter you will be put on a "maintenance" injection every two or three months depending on whether or not you still experience any neurological symptoms.

As to the Folate you've probably been prescribed them for three months or so. Your level should be re-tested then to see if you need to continue supplementing. Folate is normally sourced by eating leafy green vegetables, sprouts, broccoli, asparagus, spinach, peas, beans etc and folic acid can now be found in may breakfast cereals.

Be aware it is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having 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 wish you well

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I am like clivealive I am 66 and have pa I was diagnosed 37 years ago. I have to tweak my treatment every now Nd gain but with the help of people on here you normally find a solution. I take folic acid prescribed by the doctor 5mg daily as they need it I am also prescribed vitamin d. I am having tests on my iron at the moment as I am very breathless. My injections are every three months with doc and self inject at home My life is good on the whole I don’t miss out on anything I think the main thing is too learn to listen to your body and treat it with love and kindness Good luck 😉 life is good x x

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Thanks Patjamber.

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Hi,

I've assumed you're in UK.

"my GP seemed to be saying I probably need them every three months"

"suggested 6 shots of B12 over two weeks which I've had."

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

You mention dizziness which I think is usually considered as a neurological symptom.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member)

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

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

2) UK B12 treatment for B12 deficiency WITH neuro symptoms is ....

A B12 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.

From what you have written, GP appears to have used first pattern of treatment. This may not be enough if neuro symptoms are present.

Adequate treatment is vital or there is a risk of further deterioration including spinal problems.

Referrals

If neuro symptoms are present , NICE CKS link below recommends GP seeks advice from a haematologist.

If you have neuro symptoms has your GP contacted a haematologist or have you been referred to a haematologist?

Have you been referred to a neurologist if neuro symptoms present?

See following UK B12 documents for more info on UK B12 treatment.

UK B12 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...

More B12 info in pinned posts including a useful summary of B12 documents in third pinned post.

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.

"Newly diagnosed with PA"

May be worth joining and talking to PAS. Lots of useful info on PAS website.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

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/

B12d.org

b12d.org/

UK B12 Blogs

May be relevant stories on these blogs.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about "What to do next" if b12 deficiency suspected.

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Auto-immune diseases

PA is an auto-immune disease. Having one auto-immune condition can increase chances of developing another. Has GP excluded possibility of other conditions eg Coeliac disease, Thyroid problems?

Coeliac Disease

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Quite a few on this forum have thyroid problems. May be worth putting any thyroid results on Thyroid Uk forum on HU. in UK, Gps often only test TSH which will not give full picture of thyroid function. There are other possible thyroid tests.

thyroiduk.org/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

"awaiting futher blood tests results."

Do you know what tests have been ordered?

Best advice I ever got, was to always get copies of any blood test results.

Access to Medical Records (England)

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

nhs.uk/chq/pages/1309.aspx?...

I am not medically trained.

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Hi Sleppybunny yes in the UK thanks for the information and links, I do have balance problems which i thought was dizziness, and tinnitus.

My next GP appointment is worryingly in two weeks but I was given 5 shots of B12 in vials by the hospital pharmacy with your information I'm thinking I should get some syringes and self inject until my appointment.

Would this cause any issues with the treatment being organised by my doctor?

I will ask for a referral to haematology.

And contact/join PAS.

Any info on self injecting and picking up the right equipment in the UK.

Many Thanks.

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Hi,

If you have concerns about your treatment, I would suggest joining and talking to PAS before next appt.

PAS can sometimes intervene on behalf of PAS members. There are stories on Martyn Hooper's blog about how PAS has supported members.

"I do have balance problems which i thought was dizziness, and tinnitus."

These would usually be considered as neuro symptoms.

Would suggest you take info on UK B12 treatment for those with neuro symptoms to any appt as sadly some UK doctors are unaware that where neuro symptoms are present, treatment should be more intensive.

UK GPs will probably have a copy of BNF (British National Formulary) on their desk. If they turn to Chapter 9 Section 1.2 it lists recommended treatment for those with B12 deficiency with neuro symptoms.

Might also be worth writing a brief, polite letter to GP prior to next appt listing any concerns, supportive extracts from UK b12 documents, neuro symptoms etc.

In UK, my understanding is that letters to GP are filed with medical notes so are a record of issues raised. In my opinion, a letter to GPs is less likely to be ignored than info discussed in appt or info on copies handed over.

If GP is reluctant to consider following neurological b12 treatment regime, may be worth pointing out in a letter or discussion the potential consequences of Under Treatment of B12 deficiency with neuro symptoms.

I think it is a good idea to take a supportive person with you to appts. My opinion is that GPs are likely to be kinder if a witness is present. Some people on forum have had difficult experiences trying to get B12 treatment. Even better in my opinion, if person with patient has read up about b12 and is willing to speak up on behalf of patient.

Words of warning.....

Some GPs find it difficult to deal with assertive patients and GP/patient relationship may be affected.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society.... See Page 2.

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Letters to GP about Under Treatment of B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

Proof of PA diagnosis

I also think it is worth getting proof of PA diagnosis eg copies of medical records/test results/doctors' letters confirming diagnosis. Some forum members have had injections stopped at some point and when they tried to get them reinstated were told there was no PA diagnosis in their records. Lots of stories on Martyn Hooper's blog about injections being stopped.

Help for GPs

PAS website has section for health professionals which your GP may find of interest. They can join PAS for free as associate members.

pernicious-anaemia-society....

PAS article "An Update for Medical Professionals: Diagnosis and Treatment " available to PAS members only.

pernicious-anaemia-society.... See Page 1.

I gave my GPs a copy of the book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper.

I hope you get the treatment you need.

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Thanks again Sleepybunny,

I've joined the PAS and will call them tomorrow for advice and guidance with my doctors appointment.

Best Regards

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Hi,

PAS office not open every day but answerphone so messages can be left. Best to phone rather than e-mail.

pernicious-anaemia-society....

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Hi Odaat. I suffer from B12 deficiency. My GP won't diagnose me with PA as back in 2015 my initial tests showed a very low B12, but proved' (with a 50% reliable test 😏) that I have intrinsic factor, despite the fact that my mother definitely, and probably grandmother had PA, my mum remembers her mincing raw liver!! I had many scarey physical symptoms but it was the cognitive deficiencies that would eventually lead to me losing my career.

The scarey stuff included what you describe, eventually having episodes of being unable to get out of bed because of the 'dizziness' you describe.

I am now VERY well, having taken my health into my own hands. After a few years of keeping a symptom diary and trying different forms of B12, I now self inject every 2 weeks, take a broad spectrum mineral and vitamin supplement, magnesium and folic acid. So there is a huge light at the end of your tunnel Odaat.

Can I encourage you to get as much information from the people and information on this forum and the PA society so that you can be well informed when you go to your GP. In fairness, GP's are generalists who had a couple of hours training in this initially, and unless they have taken the time to research forms of B12 deficiency are following outdated and downright wrong guidelines!

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Thanks for the reply Baggy8 glad you're doing well, it's great to know that there is hope.

As I'm weeks into this and have been given lots of information need to let it all sink in still a bit fuzzy in the head department.

I'm going to print of some of the info for my next GP appointment.

Take care.

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