Belsfield

[Belsfield]

Yesterday I had a hospital appointment to see a haematologist, I thought at long last here is someone who will understand how I feel, Her first remark was what was the reason for me being there, told her my history she then turned her computer round and said your B12 was high at last reading and I said that was because blood was taken after I had used patches and I had just had my 3 month injection. She then said I couldn’t have B12 definicy. I had taken with me a list of my symptoms I got to second one palpations and she said I had better get a ECG something wrong with my heart. Said there wasn’t, folded up my paper and said to her I obviously didn’t need it. She then said If the patches worked for me I would be just as well to keep using them, reminded me she was a hematoligist and dealt with blood. At this stage I realised my visit had been a waste of time. This has left me depressed, I want help to deal with this, can anyone tell me where I can find this. My GP is a lovely person but has admitted that he doesn’t know much about this condition. 😥😥

[Sleepybunny]

Hi,

Sorry to hear that you had a disappointing appointment with haematologist.

Sadly lack of understanding of B12 deficiency exists in specialist doctors, just as in GPs and other health professionals.

See these links below for more examples.

b12deficiency.info/case-stu...

b12deficiency.info/letters/

b12awareness.org/testimonia...

I can relate to some of your experience as I brought up the possibility of B12 deficiency with numerous specialists eg neurologists, endocrinologist, rheumatologist etc only for them to be dismissive. With one exception (a neurologist), none of the specialists or GPs seemed willing to look at the whole picture eg what was causing all/most of my symptoms. They seemed only willing to look at symptoms relating to one area eg brain or joints or muscles or glands or blood, rather than putting all the pieces together and completing the jigsaw.

Have you considered talking to PAS about your experiences with haematologist? You would need to be a PAS member.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

If you're in UK, there might be a PAS support group within reach. PAS support groups can be a source of useful info eg helpful GPs.

"My GP is a lovely person but has admitted that he doesn’t know much about this condition"

If he 's caring, he'll make the effort to learn more.

Has your GP joined PAS?

It's free for GPs and other health professionals to join as associate members.

pernicious-anaemia-society....

I believe that the PAS has access to a GP who understands PA/B12 deficiency so your GP might be able to speak to that GP.

If he doesn't know much about B12 deficiency, have you considered donating a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" to the practice?

If you or GP joins PAS then there are lots of useful articles about PA and B12 deficiency in PAS library online.

Might be worth your GP reading "An Update for Medical Professionals: Diagnosis and Treatment"

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

There's a FAQ page for medical professionals on PAS website.

pernicious-anaemia-society....

Other specialists

Have you seen a neurologist if you have neuro symptoms eg tingling, pins and needles, tremors, tinnitus, balance problems, memory issues etc?

It is your right to request a referral but GP does not have to agree. I used to put referral requests in a brief, polite letter along with evidence that supported my request eg symptoms, family medical history, extracts from UK B12 documents. In UK, letters addressed to GP are supposed to be filed with a patient's medical records so are harder to ignore.

A gastro-enterologist referral might be appropriate if there are gut symptoms. An endoscopy might pick up signs of gut damage from PA, Coeliac disease, H Pylori infection 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 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.

"I want help to deal with this, can anyone tell me where I can find this"

Have you considered contacting HDA patient care trust if you're in UK?

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 access to specialist doctors for second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

I hope you get the help you need.

I am not medically trained.

[Belsfield in reply to Sleepybunny]

Thank you. Sleepybunny

[Belsfield]

Thank you beginner1.

[Sleepybunny in reply to Belsfield]

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...

[Cherylclaire Forum Support]

I think Hidden is right- after all, the GP is the one that has to amalgamate all the findings from the specialists eventually, so is more likely to see the whole picture. Also they are far more likely to be able to tell when you are struggling or doing well: they get to look at you more often, and have less time with each patient, so visual assessments more valuable for them.

Have heard so much false information from haematologists regarding the use of B12. One of them also put my cognitive impairment down to lack of oxygen in the brain because I used to smoke - even my GP who is very accustomed to keeping a relaxed poker-face raised her eyebrows at that.

The neurologist actually arranged for a lot of testing: brain MRI, electrical nerve tests- a nice man who listened to me, but said he didn't know much about B12 deficiency (???)

Have seen 3 gastroenterologists- only the last one did anything beyond talking to me for 5 minutes- but all said "IBS" -although the last one admitted that it did not explain all my symptoms, she said as far as their department was concerned, that was her opinion.

So yes, you are right, disappointing that they are so dismissive, but don't get depressed.

You have a GP that you have some faith in, and that will be important.

The one person who was absolutely certain that I had ongoing B12 deficiency problems was an ENT specialist, who actually read my GP's report and praised her for being thorough, agreed with me that saliva gland infection and saliva duct strictures can adversely affect B12 absorption, and was pleased that I had brought in photos (in case I had cognitive/ memory problems on the day)- this man said that I was RIGHT to self-inject every other day, that it would take a long time but to be patient and not give up. He said it was obvious from looking at the photos, and in my mouth. No tests, just lots of previous experience. Possibly from initial training in a country where they are far more aware of and familiar with the consequences of having B12 deficiency.

So don't let the specialists get to you: you just haven't found the right one yet !