Fed up: Hi everyone I have B1... - Pernicious Anaemi...

Pernicious Anaemia Society

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Deejanator profile image
10 Replies

Hi everyone I have B12 injections every 12 weeks and a yearly blood test. My doctors receptionist always tell me they are (Fine)??? And I carnt discuss it with the doctors as they are busy . I want to pay for a private blood test as I don’t feel fine always tired , emotional, and confused forgetful, I’m only 55 and just want to check all is good . I live in a village just outside Cleethorpes and wondered if anyone knew of a place and a price for private blood tests plz TIA

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Deejanator
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fbirder profile image
fbirder

Write to your doctors saying that your symptoms are recurring before the 12 weeks. Ask them to switch you over to 8 weeks. They may not know that the guidelines were changed from 'every three months' to 'every two to three months' a few years ago, so gently suggest that they check in the BNF (British National Formulary).

Nackapan profile image
Nackapan

Writing in is the only way I get 'heard 'Can always be followed uo by a telephone consult.

As I've found can be scanned on notes then not read by a doctor!!

Get copies I'd your blood results

Dont get into a dialogue with a receptionist .

Theu are put in sn awkward position and should not not comment.

They just read off normal.

Deejanator profile image
Deejanator in reply toNackapan

Thank you

Eviewillow6 profile image
Eviewillow6

Hi Thriva are excellent. ..check them out ...I was feeling awful all the time....fatigued..headaches ....depressed ....was getting no where with my gp then came across Thriva ...they send you a kit which you do at home and you get your results in 48 hours with advice from doctors. .health plans etc .. ...that s how I found out I was folate deficient....started taking folic acid and felt better with in a week ...sorry to ask but do you feel you could be menapausal ...I'm going through similar symtoms so I'm doing there hormonal test next ...

Deejanator profile image
Deejanator in reply toEviewillow6

Thank you I will look into them x

Sleepybunny profile image
Sleepybunny

Hi,

Confusion and memory issues would usually be considered as neurological problems.

Do you have any other neuro symptoms?

Link about writing a letter to GP if under treated for B12 deficiency with neuro symptoms present.

b12deficiency.info/b12-writ...

BNF Hydroxycobalamin

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

See section for patients with "neurological involvement" in above link.

I wrote some very detailed replies on the thread "Neurological symptoms" which is one above this thread which hopefully has info you'll find useful.

I am not medically trained.

LaPantera profile image
LaPantera

You have a right under Law to view your records. I always get copies of my bloods report now after being extremely forceful a few years back. I also obtained a DVD of a recent MRI scan after writing to the Lab and offering to pay any cost involved in sending me a copy. The Lab wrote me a very nice letter back which came with the DVD saying there was no need for me to pay. Hope this is helpful .... quote freedom of information Act.

[erased]

LizWilsonpa profile image
LizWilsonpa

Hi. Sorry to hear you're struggling - like many on here I now self-inject.

No one's touched on it yet (that I saw) but you mention yearly blood tests. The GP shouldn't be re-testing as you're likely to get false results once receiving injections or taking supplements.

Sleepybunny profile image
Sleepybunny

Articles below might be helpful

Testing B12 during treatment (PAS article)

pernicious-anaemia-society....

Testing B12 during treatment

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

stichtingb12tekort.nl/engli...

UK B12 documents

There is something about testing after treatment has started in document below.

BSH Cobalamin and Folate Guidelines

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

Summary of 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.

BNF Hydroxycobalamin

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

NICE CKS B12 deficiency and Folate deficiency

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

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

"My doctors receptionist always tell me they are (Fine)???"

You should be able to get your own copies of or access to your results.

See links below.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

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

patients-association.org.uk...

Retention of UK medical records

bma.org.uk/advice-and-suppo...

Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case you need it in the future.

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