Worried about daughter

[Kapat1]

Please see Previous post

My 19 yr old daughter is showing symptoms of PA just like myself. Her recent bloods came back normal , no action required ????

B12 142, folate 7.5, serum freeT4 8.2, Esr mildly abnormal, FBC mildly abnormal Erythrocytes 19 mm, mean corpusc.Hb.conc. 352

Update- test result today

Ab Instrinsic Factor test is negative

Anyone got any advise

[Sleepybunny]

Apologies in advance if i've said any of this before to you.

Are you able to change surgeries?

I stuck with a surgery where I had been shouted at and where with numerous B12 deficiency symptoms I was not getting treatment because I thought the problem was me. After I changed to another surgery I realised that the problem was not me.

In the past I have written polite letters listing my concerns about treatment, what I did not do is back up my comments with evidence from official documents. fbirder has a summary of useful quotes from mainly UK b12 documents that would be useful for this. There is a link to summary on fbirder's profile page and also a link in third pinned post on this forum.

My understanding is that letters have to be filed in a person's medical notes so are a record of concerns raised. Nest time I write a letter about B12 issues I will include a copy of the PAS Symptoms list with all my symptoms ticked.

pernicious-anaemia-society....

Useful link about writing to GPs, does not mention the BCSH Cobalamin Guidelines which I would mention if I write further letters to my GPs.

b12deficiency.info/b12-writ...

"Ab Instrinsic Factor test is negative "

Page 29 of the "BCSH Cobalamin and Folate guidelines" mentions Antibody Negative PA meaning PA where the iFA test comes back negative. Has her GP seen this page? Some GPs may not have read this document.

Think Antibody negative PA is also mentioned in Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency ".

I gave a copy of this book to my GPs.

Martyn Hooper, the chair of the PAS tested negative more than once on the IFA test before he finally tested positive. It might be worth thinking about joining PAS. Hopefully they could pass on more info about Antibody Negative PA. There is also a section on PAS website for medical professionals.

pernicious-anaemia-society....

PAS tel no 01656 769 717

I am not a medic just a person who has struggled to get a diagnosis.

Another link GPs might find helpful. The summary makes it clear that people who are symptomatic for B12 deficiency should be treated even if b12 blood levels are normal range. to avoid neurological damage.

bmj.com/content/349/bmj.g5226

What were her results for MCV and MCH on the FBC (with reference ranges)? High MCV and high MCH can indicate the possibility of macrocytosis (enlarged red blood cells).

Macrocytosis can sometimes be found in people who are b12 deficient or folate deficient. Macrocytosis may be masked in someone who has iron deficiency as well as B12 deficiency because low iron may lead to microcytosis (small red blood cells).

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

labtestsonline.org.uk/under...

After many years of trying to get treatment (my IFA test was negative) i chose to self treat but this was an absolutely last resort for me when I had tried everything to get NHS treatment. Self treating can make it virtually impossible to get NHS treatment.

[Schenks]

My advice? Stuff them, and self-inject. Seriously.

[Kapat1 in reply to Schenks]

Yes I self inject as I've been PA since 2012. But my daughter is reluctant to do this as she doesn't have a diagnoses on her record.

[Schenks in reply to Kapat1]

Neither did I, nor any of my family, but that hasn't stopped it making a big difference to my symptoms. But, with adult children what can you do?

[Kapat1 in reply to Schenks]

Tell me about it lol

[fbirder]

What are the units (ng/L. pmol/L) and the ranges for the test results?

Ask for an MMA test as well.

IMNSHO an MMA test should be required for anybody symptomatic with 'borderline' B12. Actually, treatment should be required for anybody in that condition - but MMA will do as second best.

[Kapat1 in reply to fbirder]

So update on GP visit . We saw a very young new doctor who agreed on a trial of b12 for my daughter to see how she gets on! I suppose that's the best outcome and I should be grateful but I don't have much to celebrate because it's been a long stressful journey to this point. He also didn't have a clue that the nurse would administer the B12 or what a MMA test is !!!!!!!

[Gambit62 Administrator in reply to Kapat1]

unfortunately there is a very low awareness of B12 deficiency, diagnosis, tests and even treatment, which means you are far from alone in getting a GP who hasn't heard of MMA. Hope the trial goes well

[Kapat1]

Going with daughter to GP again today and will try for treatment and MMA