Daughter want GP diagnosis

I have been self injecting for a year, and it has changed my life. My daughter has spent 6 years seeing many specialists including neuro and gastro. I advised her to SI B12, and she is noticing changes already, feeling in fingers etc. but she is adamant to stop now, as wants her GP to diagnose her, and it be on her records. I have told her she will have a long hard struggle and should continue to self treat. She is autistic and cannot understand that is best to self treat than rely on a GP. She wants to stop self treating for 3 months, so that she can have a blood test at the GP, highly likely that it will be 'within range' and the GP will dismiss her. I can't see her go downhill again. Any ideas on the approach I can take with simple explanations as to why it is hard to diagnose and where to get information from that she can take to her GP. She is dyslexic too, so simple and effective documents ... I'm her Mum and get emotional when talking to her. Thanks for listening.

[Nackapan]

Could you get her to havevtgr Intrinsic factor anybody test .It dies show about 50 % of those with PA

Of negative does not rule it out.

Also vit D status folic acid iron

Full bloods ?

B1e can be in your nlod gircavlkng time after injections do unlikely a lie number will be shown.

That's why it's recommended not to trdt when injecting.

If anything if the go is not aware of b1e injections and readings are high it may give false alarm bells.

Or say she's had some b1w injections that have solved listed symptoms.

Present those findings to the gp?

I think it's good to be on her medical notes.

I can understand how difficult this is for you.

We have taught our children to take medical advice over many things. Hope you find a way .

Good B12 has been helping her .

PAS may help with information fir your daughter as well as GPS

[Hidden in reply to Nackapan]

Thank you. I will let her decide, and have prepared some information in readiness to what to expect from her GP. What benefits will there be to having on her medical records? maybe some limited reasons. With regard to the intrinisc factor test, mine came back neg, but symptoms showed otherwise!

[Hidden]

Knowing how difficult it is with b12 deficiency and in convincing Doctors I understand both sides of your dilemma. Personally Your daughters health is the priority and as you say with self injecting her health has improved. Your daughter wanting to have B12 deficiency on her records that I can understand.

The only thing is whether you think your GP is prepared to listen to you in pointing out the improvements she has gained through injecting or are they likely to take offence.

Not a nice situation to be in. !

But your daughters health must take priority in my eyes !

Wishing you both my best wishes in finding a compromise.

[Narwhal10]

Hi Terrigreen,

I’m really pleased to hear you are both feeling the benefit. This is a mere suggestion and from an outside perspective with little idea of the intricacies involved. How about putting it to your daughter and both of you considering going private and finding a good GP ?

You can search for one in your area. It may be worth discussing with your daughter that she doesn’t have to stop treatment. That her symptoms prior to a trial of B12 were x, y, z. As a consequence of the injections they were alleviated/lessened. Therefore, indicating it is highly likely she has PA/vitamin B12 deficiency. She will need to continue them at whatever frequency and requests this information is on her medical records. A good doctor will take this on board.

Medicine deals with probabilities, likelihood’s and risk factors. So, if you speak their language they listen more. Private doctors are more thorough, aren’t as rushed. I have found them more respectful.

Best wishes.

[Hidden in reply to Narwhal10]

Great idea, thank you for your kind reply, much appreciated.

[Narwhal10 in reply to Hidden]

You are welcome and I forgot - there’s a family history. You do not have to disclose it is you but just say ‘on my side there is a family history of PA/ vitamin B12 deficiency.’

Best wishes

[newlandvale]

I self inject twice a week between nhs injections but worry what would happen if I was ever hosptalised (road accidents happen) and didn't have access to my B12. How would that situation affect my recovery ...? For this reason I will continue to pressure and attempt to educate the medical establishment, hopefully with more energy as my health improves. I completely understand where your dauter is coming from.

[Hidden in reply to newlandvale]

I'm hoping that her conversation with GP will be on her records, that her 5 doses made an exceptional change to her life. I totally agree with your angle too. I just don't want her to come off injections to have a blood test and fall ill again, it's been 6 years of misdiagnosis of MS, crohns, etc, hopefully the GP is joining the dots now! It can only be B12 deficiency or PA, everything else is ruled out.

[newlandvale in reply to Hidden]

Damned if we do and damned if we don't! I agree your daughter must keep herself healthy when doctors are failing her, but I have frequently told doctors and specialists about my self-injecting and not one has put it in their notes (Patient Access) despite their disapproval and dire predictions! Perhaps I should insist they log it next time I see a doctor - could be a long wait the way the NHS works these days.

[Sleepybunny]

Hi,

I've assumed your daughter is an adult.

Might be helpful to join and talk to PAS if PA is a possibility.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

There are lots of useful articles on PAS website.

pernicious-anaemia-society....

Some people on forum have been helped by person who runs B12 Deficiency Info website.

B12 Deficiency Info website

b12deficiency.info/

"highly likely that it will be 'within range' and the GP will dismiss her."

Link about what to do next if B12 deficiency suspected or recently diagnosed

b12deficiency.info/what-to-...

UK guidelines indicate that people with symptoms of B12 deficiency should be treated even if serum B12 results are within range.

Some of the documents below are quite complex so you may want to summarise them for your daughter.

NHS link about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

UK B12 documents

BSH Cobalamin and Folate Guidelines (whole document)

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

This includes the statement

"in the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"

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 Hydroxocobalamin

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

NICE CKS B12 deficiency and Folate deficiency

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

I found the above document easy to follow. Click on blue sections for more information

I suggest that you get hold of the local guidelines on treatment/diagnosis of B12 deficiency for your daughter's CCG (Clinical Commissioning Group) /Health Board. The local guidance may differ from national guidance.

Doctors are likely to follow the local guidelines when diagnosing and treating B12 deficiency.

If you find them, compare the info in the local guidelines with the info in BNF, BSH and NICE CKS links.

Try searching forum posts with terms "local guidelines" as some have been posted.

Try an internet search with "name of CCG/Health Board B12 deficiency guidelines"

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

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 in above link is about having the symptoms of B12 deficiency with a serum B12 result that is within range.

"I'm hoping that her conversation with GP will be on her records, that her 5 doses made an exceptional change to her life."

Has she accessed her test results and medical records?

Accessing Health Records (England)

patients-association.org.uk...

Some people access test results and medical records with NHS app.

nhs.uk/nhs-app/nhs-app-help...

Accessing someone else's medical records

nhs.uk/common-health-questi...

I am not medically trained.

[Hidden in reply to Sleepybunny]

Wow thank you. I Will work through this, my daughter is adult, dyslexic and asd. So I break things down for her x

[Sleepybunny]

I had some very difficult experiences with doctors and came close to making a formal complaint.

When I wanted to make sure there was a record of a conversation with GP somewhere in my medical record, I wrote a brief polite letter to GP mentioning main points of the conversation and anything GP had agreed to. I also kept a copy of any letters I wrote.

Writing letters may irritate some GPs.

You might also be interested to know that GPs are supposed to correct mistakes in medical records eg wrong date of birth, wrong address etc.

They do not have to change a diagnosis or comments about a patient just because a patient is unhappy about what has been said or disagrees with diagnosis. A patient can ask for a comment to be inserted into medical records saying that they don't agree with what has been said. I think they can also say why they don't agree.

Links about mistakes in medical records

gponline.com/responding-req...

[Hidden in reply to Sleepybunny]

Interesting reading sleepybunny.It states that if the doctor at that particular time makes a statement your cant have it removed later.

So probably many have hypochondriac on their records, when later in fact it was proved that this was not the case, but you cant get it removed because the doctor thought you were at that time.!

😂😂

[Sleepybunny in reply to Hidden]

"So probably many have hypochondriac on their records"

I do have hypochondria on my records....

[Hidden in reply to Sleepybunny]

😱😂👍