Stonewalling Doctor: Hi -- I'm new here... - Pernicious Anaemi...

Pernicious Anaemia Society
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Stonewalling Doctor

AmethystTrask
AmethystTrask

Hi -- I'm new here, and this is my first post. I'm in my twenties, and was diagnosed 6 years ago with Fibromyalgia/M.E.; and until recently, I took it for granted that that was what I had. However, a few months ago, I found out about Pernicious Anaemia/B12 Deficiency from my mother's long-lost cousin (a retired doctor), and on the PAS website, which he directed me to, I found I had more than half the symptoms of PA; he also pointed out Martyn Hooper's words, "The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12" and was stunned that no doctor had ever told me this before in the years and years of appointments I'd had.

And so, after waiting more than a month for an appointment, I finally got the chance to ask my doctor to start me on a course of B12 injections. I'd read a lot of other people's posts discussing their struggles getting the treatment they needed for PA/B12 deficiency, so was naturally nervous, but it went even worse than I'd feared. I'd printed out several things from the PAS website to show her, but she wouldn't listen to a word. She had this patronising smile on her face the entire time I was speaking, and then simply said that that "wasn't what she understood from her training".

She insisted I have another blood test to check my B12 level, and told me that if it wasn't deficient, she couldn't consider giving me a course of injections. I'd been to this same doctor in September and told her that my symptoms were so severe I was suicidal and begged her for help, and she told me there was absolutely nothing she could do for me -- she refused even to refer me to a pain clinic or help me get acupuncture on the NHS for the headache that I've literally had non-stop for over six months. So I guess I shouldn't have been surprised.

I'm sorry to have written such a long, complaining post, but I'm so demoralised from this. If my test doesn't show up as deficient, I don't know what I'm going to do. I know I'm far from the only one who's experienced something like this, and would love to hear anything hopeful. Thanks for reading.

17 Replies
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Really sorry to hear if your plight . I’m in bed with flu or some sort of bug .But I know how it feels in your position . I was ignored for a long time and I didn’t know about PA or PAS . I eventually got a diagnosis of PA , but no correct treatment . 3 monthly injection -insufficient . Now I self inject weekly ( it’s cheap about £1.20 an injection) Keeps me well . Vitamin B12 injections are the only solution if you have PA . You cannot overdose . IM. sorry I must close as I feel so ill . Just wanted to get in touch . It’s asful to await replies when you feel as bad as you . Medical profession knows nothing about PA . You will get help here . I’m sorry I have to close -this bug is getting the better of me now .

Don’t despair. You will be helped . I have to lie down -my head is spinning . I have a temperature. Head hot ! Best wishes .

Thank you so much for taking the time to reply to me in spite of your flu/bug! Are you able to let me know where you get your B12 for self-treatment? A big part of me thinks I might just be better off cutting out the middle man.

I’ve put up the information for all to see . You should be able to find it posted today at 12.15

Thank you very, very much!!

This is how they treat a suspected B12 deficiency in Hull and East Yorkshire - hey.nhs.uk/wp/wp-content/up...

Note how they separate patients into three groups - definitively deficient, not deficienct, and borderline. Both the deficient and borderline patients are treated with B12 injections. The non-deficient patients, if they show symptoms of a deficiency, have second line testing.

I would print this document and send it to her with a covering letter asking to be treated according to those guidelines.

Thank you so much -- I'll definitely try this!! Ironically, I lived in the Hull/East Yorkshire area all my life and it was only when after I moved some distance away that I discovered PA/B12 deficiency. Life is a strange thing.

Hi,

Have you considered joining and talking to PAS (Pernicious Anaemia Society)?

"I'd printed out several things from the PAS website to show her, but she wouldn't listen to a word"

Blog post explaining how PAS can support those seeking PA diagnosis. Martyn Hooper, chair of PAS, describes similar situation to yours in blog post below.

martynhooper.com/2017/06/24...

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Offers support and info about PA.

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/

Lots of useful B12 info on above website including a section on letters to GP about B12 if not treated adequately.

UK B12 documents

If you are in UK, I suggest reading all of these, especially BSH guidelines.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines how PA can be diagnosed in UK. Has your GP followed this process?

BMJ B12 article

bmj.com/content/349/bmj.g5226

BMj article emphasises that patients who are symptomatic for B12 deficiency should be treated even if B12 levels are within range.

BNF

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

NICE CKS

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

NICE CKs link recommend sthat GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.

If you have neuro symptoms, has your GP contacted a haematologist?

A neurologist?

Gastro-enterologist if you have gut issues?

Gastro specialist may be able to spot signs of gut damage from PA, Coeliac disease, H Pylori etc

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 most UK b12 guidelines. I gave a copy to my GPs.

"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

... patronising smile on her face the entire time ...simply said that that "wasn't what she understood from her training".

GPs get very little training on B12 deficiency.

To my mind it seems to be left to the well-informed patient to do the training....

Help for GP

PAS website has section for health professionals.

pernicious-anaemia-society....

"told her that my symptoms were so severe ....begged her for help"

"told me there was absolutely nothing she could do"

My personal view is that it is more effective to put concerns/queries over treatment etc into a short, polite letter to GP. In UK, letters to GP are supposed to be filed with patient's records so I feel are less likely to be ignored than something said in an appointment which may be forgotten or not recorded.

I can relate to your experience of begging for help as I did the same from numerous GPs and specialists while suffering typical symptoms of B12 deficiency. Part of the problem for me was that most of my results were within normal range so no-one would listen to me.

I learnt a very hard life lesson which was that the only person who was going to help me was me so I had to educate myself about B12 deficiency, the UK guidelines etc to be able to fight my corner. I also had to resort to self treatment for while.

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/

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Best piece of advice I ever got was to always get copies of all my blood test results.

Do you get copies of all your test results?

Have you been tested for PA?

In UK, this would be an Intrinsic Factor Antibody test (IFA). IFA result is not always reliable. It is still possible to have PA even if IFA result is negative.

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-...

Iron Studies

labtestsonline.org.uk/tests...

Coeliac disease

Have you ever been tested for Coeliac disease?

NICE guidelines Coeliac Disease (2015 version) recommend anyone with unexplained B12, folate or iron deficiencies should be tested. UK guidelines recommend two first line tests

1) tTG IgA

2) Total IgA

Make sure both tests are done. UK GPs sometimes forget to do second one (Total IgA).

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

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Tested for H Pylori infection?

patient.info/health/dyspeps...

Tested for internal parasites eg fish tapeworm?

Exposure to nitrous oxide?

Nitrous Oxide

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

Thyroid Disease

It's not uncommon on this forum for people to have thyroid problems. I'd suggest putting any thyroid results on Thyroid UK forum on HU. In UK, GPs often only test TSH. This will not give a full picture of thyroid function; other tests are needed.

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

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

"diagnosed 6 years ago with Fibromyalgia/M.E"

I had these labels too.

I think a lot of people on this forum have had these diagnoses. While I believe ME is a real neurological illness, I think a lot of people get diagnosed with it when GP is unable or unwilling to continue to search for answers.

A ME/CFS diagnosis should be a diagnosis of exclusion ..that is only given as a diagnosis when other possible diagnoses have been tested for and excluded.

B12 deficiency can often be misdiagnosed as ME/CFS.

b12deficiency.info/misdiagn...

martynhooper.com/2018/02/10...

martynhooper.com/2015/08/04...

Misconceptions about a B12 deficiency (English language article from Dutch B12 website)

stichtingb12tekort.nl/weten...

More B12 info in pinned posts on this forum.

Other possibilities

There are many conditions with symptoms that overlap with those of B12 deficiency.

Have you ever been bitten by a tick or been in an area where ticks are common?

If yes, have you ever been checked for lyme disease?

lymediseaseaction.org.uk/

Lupus and related conditions eg Hughes syndrome (APS)?

lupusuk.org.uk/the-symptoms/

nhs.uk/conditions/antiphosp...

I am not medically trained.

Thank you so much for such a thorough, helpful reply. From now on I will certainly be getting copies of all my blood test results, and I am definitely going to be writing a letter detailing all your suggestions instead of saying these things in person (including asking to be tested for things like Lyme disease etc., which I've discussed with a couple of doctors but have always been told that testing "wasn't necessary"). I just joined the PAS last week, and I'm going to use the Christmas holidays to do as much research as I can. Thanks again.

Hi,

Just to warn you that some GPs may find it hard to deal with assertive patients and GP/patient relationship may be affected. Pressure was put on me to leave one GP surgery.

I think it's a good idea to take someone supportive with you to appointments as a witness, if GP is likely to be unhelpful.

I kept copies of any letters I wrote.

Thank you very much. "Pressure was put on me to leave one GP surgery." -- that is absolutely disgusting. I'm so sorry.

Sorry to hear about your bad experience.

Is it possible to see another doctor. She doesn't seem to be listening to your concerns.

I'm thinking the same 2nd 3rd opinions good to get.

Thank you -- I will definitely try, even if I have to change practices.

I really feel for you. I was miss diagnosed with Fibromyalgia for 5 years. I live in the US so it’s easier to get a doctor to treat the symptoms. I was having neurological symptoms for years and didn’t know it was possibly something else. I just didn’t like being told it was Fibromyalgia and they couldn’t help me with my pain. I told this to my gp and she said it wouldn’t hurt to do a vitamin deficiency panel on me. My numbers were considered normal but were 265. She immediately did further blood work and started me on loading doses of b12. I’m now constant around 450 for numbers and still have symptoms. I saw a neurologist and was told my nerve damage is permanent. You need to keep fighting. You are your best advocate. By they way mine is genetic. It runs on both sides of my family. 3 more family members have been diagnosed with PA since I was.

"I saw a neurologist and was told my nerve damage is permanent." I am so, so, so sorry for you. It's really scary how slowly doctors tend to move on this when the damage can be so serious.

Hi again,

I have met more than one person who suffered sub-acute combined degeneration of the spinal cord through delayed diagnosis of B12 deficiency/PA.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

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

Lots of other useful leaflets/articles about PA in PAS library section eg "An Update for Medical Professionals: Diagnosis and Treatment" See Page 1 of articles.

Some forum members have given that to GPs.

Blog post from Martyn Hooper's blog, mentions SACD

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

I wonder if your GP is aware of the potential consequences of untreated or under treated B12 deficiency eg SACD. I gave one set of GPs the PAS leaflet about SACD.

Letters to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

Letters to GP if symptomatic for B12 deficiency but with a B12 result that is within range. Some really useful B12 info in this link. It mentions a case in which someone suffered SACD even though their B12 level was within range.

b12deficiency.info/b12-writ...

In summary, in UK, recent guidelines make it clear that people should be treated if they are symptomatic for B12 deficiency even if B12 level is within range. Failure to do so could lead to permanent neurological damage. See BSH Cobalamin guidelines link for more info.

"I will certainly be getting copies of all my blood test results"

Some people also get a complete set of medical records. May be a charge for printing results and records out.

Can be very interesting to see what GPs have written in past. I'm sure a lot of us have hypochondria, psychosomatic, depressive in our notes.

Some UK GP surgeries have access to an on-line summary of results/records. See GP surgery website for details. Remember it is just a summary and may not contain all info wanted. May be worth asking for access to paper records as can be useful to see letters written by consultants etc.

If you find something in your notes you do not agree with, GP does not have to change what they have written but you can ask for a note to be inserted in your records giving your opinion.

When you get your results, have a look at Full Blood Count (FBC) results as well as B12, folate and iron/ferritin results. There can be useful clues on FBC as to whether B12, folate or iron deficiencies are possibilities. See links in my other post about Full Blood Count and Macrocytosis.

Some GPs may not be aware that people can have B12 deficiency without macrocytosis ( enlarged red blood cells).

High MCV on FBC may indicate possibility of macrocytosis. B12 deficiency can lead to enlarged red blood cells ( so can folate deficiency). Iron deficiency can lead to small red blood cells (microcytosis).

A person who has both iron deficiency and B12 deficiency may appear to have a normal range MCV because the effects of the iron deficiency are masking the effects of the B12 deficiency.

"I'm in my twenties"

There are stories on Martyn Hooper's blog about teenagers/young adults with PA/B12 deficiency.

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

AmethystTrask I really hope you get the help and treatment you need. Might be wise to talk to PAS before you write any letters to GP. Best to phone.

pernicious-anaemia-society....

PAS office may be closed on some days over festive season so if you want to talk to them before Christmas, probably better to do it soon.

Thank you so much for all your incredibly helpful links and information, I appreciate it so much.

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