My grandmother died of What can I do,?. I am hypothyroid & have all the symptoms of PA but GP said B12 OK

[PolyannaYorkshire]

What can I do,?

[wedgewood]

Yes it happens so often- The Medical profession is very ignorant about Pernicious Anaemia/ B12 deficiency . You can have a B12 reading that is seemingly normal and actually be deficient

it’s called functional deficiency .Your GP should know this . The fact that PA is in your family is also a considerable indication

But first and foremost your symptoms are the most important factor . .

You can get help here . A member on this forum Sleepy bunny can give you medical references that you can quote / print out to your GP

Also being a member of PAS , you will get help from the society . You can phone them at certain times . They can intervene with your GP on your behalf .

You have come to the right place . . I have a diagnosis of PA , but have to self inject to keep well , as the big standard 3 monthly injection is insufficient .

You will get better responses than mine , but i wanted to respond to you -I know what it feels like waiting for a response when feeling so dreadful. Best wishes .

[PolyannaYorkshire in reply to wedgewood]

How did you find out about injecting yourself? I've just found B12 to spray under the tongue

[wedgewood in reply to PolyannaYorkshire]

For many Pernicious Anaemia patients , injections are the only way to get rid of the horrible symptoms . It’s important to get the correct treatment asap , or some symptoms could become irreversible . Many P.A. patients , even if they get a diagnosis which is not easy , find that the amount of injections is insufficient. So they have to get B12 single use ampoules from German online pharmacies . In Germany injectable B12 is not a prescription item , unlike here in U.K. I’ll send you information .

[PolyannaYorkshire in reply to wedgewood]

Thank you very much

[PolyannaYorkshire in reply to wedgewood]

Hi Ive just seen Superdrug will give B12 injections?!!Where do you get German injections from.. i could not find it on line

[wedgewood in reply to PolyannaYorkshire]

I sent you information to your private messages 2 weeks ago . So please read through that .

[PolyannaYorkshire in reply to wedgewood]

Thank you!

[wedgewood in reply to PolyannaYorkshire]

Here are instructions for how to obtain B12 depot ampoules from a popular German online pharmacy . You may need a translation app or use Google Chrome .

Ordering Panpharma B12 depot from versandapo.de

These ampoules come in packs of 10 , and are 1mg x 1ml

It is always advisable to register when you order fot the first time . First of all, once registered , you will save time when ordering subsequently. Also versandapo.de run a points scheme if you are registered . You are given 200 points when you register and you are awarded 1point for every Euro you spend . 250 points represent €2.50 which you can use when you pay. Once registered , you can find out how many points you have accumulated by going into your account .

To register or log in , click on the little silhouette of a head and shoulders ( top right) and fill out the form . ITS VERY IMPORTANT TO FILL IN YOUR COUNTRY BEFORE YOU ADD THE REST OF YOUR ADDRESS . Click on the drop-down list of countries. U.K. is written in German as “ VEREINIGTES KÖNIGREICH” ( United Kingdom)

Once you have done that , your U.K. postal code will be accepted by the computer . You will need to put in a password of course .

You can pay by PayPal or Bank transfer . Cards are not accepted by versandapo

For future orders , you need to click on the silhouetted head and shoulders to log in .

You can use the pharmaceutical reference number( PZN) to order Panpharma B12 depot ( Hydroxocobalamin) This is 16199653 . You get straight to the item . Panpharma do not sell the clinic packs of 100 ampoules . The ampoules usually have a use-by date of 2 years .

At the moment courier ( DHL) cost is €9.00 no matter how many packets you buy .

You can email them [e-mail]

[PolyannaYorkshire in reply to wedgewood]

Ohh thank you.. I hadn't seen this reply I just saw one about keeping sterile...

[wedgewood in reply to PolyannaYorkshire]

That P.M. was a very long one which also gave information about getting B12 depot ampoules from versandapo .

[PolyannaYorkshire in reply to wedgewood]

Yes found it now thank you,,!! 🤗

[Sleepybunny]

Hi,

I'm sure you find some answers on this forum and plenty of support.

I suggest you take a week or so to sift through the links below as there's a lot of info.

Some links I post may have details that could be upsetting so you may want to read through them with someone else with you.

UK guidelines indicate that people with the symptoms of b12 deficiency should be treated even if serum (total) B12 result is within normal range.

Link about "What to do next" if B12 deficiency suspected or recently diagnosed.

b12deficiency.info/what-to-...

If you suspect PA worth joining and talking to PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some members in other countries.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Testing for PA (PAS article)

pernicious-anaemia-society....

PAS website has lots of useful articles. Some PAS members print them off for their GPs.

pernicious-anaemia-society....

PAS website has a page for health professionals that your GP may find useful.

pernicious-anaemia-society....

There are many causes of B12 deficiency besides PA.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Have you been tested for coeliac disease?

Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.

NICE guidelines Coeliac Disease

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

More info on Coeliac UK website

coeliac.org.uk/home/

Some forum members have reported they benefitted from going gluten free even if coeliac disease not diagnosed.

H Pylori infection

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

bnf.nice.org.uk/treatment-s...

Any exposure to nitrous oxide?

Nitrous Oxide

gov.uk/drug-safety-update/n...

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Any chance of internal parasites eg fish tapeworm?

Have you eaten raw or uncooked fish eg sushi, smoked salmon?

Have you lived or stayed in an area where internal parasites are common?

Giardia Lamblia (also known as beaver fever) is another parasite that can lead to B12 deficiency and there are others.

One clue that internal parasites might be an issue is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found with results for Full Blood Count (FBC).

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Referrals

If you have neuro symptoms, have you been referred to

1) a neurologist?

2) a haematologist?

If gut symptoms present, have you been referred to

3) a gastro enterologist ?

Link below outlines when UK patients with B12 deficiency should be referred to a haematologist and gastro enterologist...

cks.nice.org.uk/topics/anae...

If GP won't refer to a haematologist, you could ask them to write to a local haematologist for advice on how to treat you.

Be warned that there is ignorance about B12 deficiency and PA among some haematologists, neurologists and other specialists so no guarantee that a referral will lead to better treatment.

Symptoms Diary

You may find it helpful to keep a daily symptoms diary which tracks changes in symptoms over time and if and when any treatment is received.

BNF link below outlines two recommended patterns of treatment for B12 deficiency in UK

1) for those without neurological symptoms

2) for those WITH neurological symptoms

BNF Hydroxocobalamin

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

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.

Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links in this reply.

To find local guidelines for your area of UK ...

1) search forum posts using terms "local guidelines"

2) search internet using "name of CCG/Health Board B12 deficiency guidelines"

3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

I hope you are not in the UK area discussed in blog post below which has a poor reputation on this forum for how B12 deficiency is managed.

b12deficiency.info/gloucest...

UK B12 documents

BSH Cobalamin and Folate Guidelines (detailed, aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from above document)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published next year.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

Point 5 is about being symptomatic for B12 deficiency with an in range serum (total) B12 result.

Link has letter templates that people can base their own letters to GP on.

I suggest that you mention the family history of PA in any letter you write to GP.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

Two useful B12 books

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).

BNF treatment info in above book is out of date. See BNF hydroxocobalamin link in this reply for up to date info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Films and videos about B12 deficiency and PA

PAS conferences

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

If your GP is lacking knowledge about B12 deficiency and PA, links below may be useful.

Misconceptions (wrong ideas) about B12 deficiency

B12 article from Mayo Clinic in US (detailed, aimed at researchers and health professionals)

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

BNF (UK ) treatment guidance has changed since above blog post was written.

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg more on causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[PolyannaYorkshire in reply to Sleepybunny]

Thank you for your help! Very useful!!