Daughters bloods, awful GP's

[Polo22]

Following on from previous post healthunlocked.com/pasoc/po...

Kept trying to get earlier B12 jab, she has not been great, told no. Checking on another matter with surgery accidentally found out she had an appointment that afternoon (fri 15th) seen by Doc i had handed Pas, info to. Disappointed, said she had read info, told her about new guidelines , she said she had browsed them too, basically didn't get it at all. Tried to be tactful, agreed it is difficult at times to assess/treat but stated given daughters symptoms the treatment provided was not optimal, given she displayed classic neuro symptoms she should have had eod injections and then more regular injections. She wasn't listening, tried to deflect every fact/researched facts and ended on well guidelines are all very well but at the end of the day how are we supposed to decide, I said listen to pt and what symptoms they report /exhibit, . Don't think I won that one, pointed out that HbA1c is affected by B12 def, and poss/probably lipids too, she appeared to switch off at that point. Did get blood forms for FBC, ferritin, iron studies, so yay me and got injection brought forward a week so yay me. Also pointed out still no one has identified causes of deficiencies and that folic acid is not the same as folate. Meanwhile her life is falling apart, school are not supportive and she has been removed from some GCSE exams and taken out of higher exams and put in foundation tier.

[Polo22]

My hospital appointment last week was not good.

[Nackapan in reply to Polo22]

Its exhausting isn't it .Hope some hope and help on the horizon

[Polo22 in reply to Nackapan]

have a pre op phone call later, WTAF? endometrium thickness over 15.5mm, abdo pain, like bad period pain, backache , groin pain, will be having diagnostic hysteroscopy, biopsies, polyp removed, what fun. Bit worried, understatement. Been having post menopausal bleeding for a while, CRP creeping up for 12/18months, according to GP CRP of 9 when <4 is ref is insignificant. CRP BH around same time 10.23. CRP BH feb 12.36 <5,

[Sleepybunny in reply to Polo22]

Hi,

Sorry to read that you're having a hard time. Some gentle online hugs to you.

"wasn't listening, tried to deflect every fact/researched facts "

Maybe you could put the info in a letter to GP and practice manager and include a request to place a copy in your daughter's medical files?

Maybe include relevant quotes from new NICE B12 deficiency guideline in letter.

nice.org.uk/guidance/ng239

My understanding is that NICE CKS (Clinical Knowledge Summary) Anaemia - B12 and Folate deficiency document is still valid. Some details conflict with new NICE guideline.

Both these articles comment that that new NICE B12 deficiency guideline does not cover children.

b12info.com/first-nice-guid...

pernicious-anaemia-society....

It's possible to leave comments under both the articles.

Perhaps it would be worth talking to PAS again to see if they have any other ideas.

pernicious-anaemia-society....

Other useful groups

Patients Association have a helpline

patients-association.org.uk...

GUTS UK (charity for digestive diseases)

gutscharity.org.uk/

Neurological Alliance

neural.org.uk/

Club B12 is a group for researchers and doctors across world interested in B12.

club-12.org/

I don't know if it's possible for members of the public to contact them and ask if they know of any plans to develop B12 deficiency guidelines for children in UK.

There may be B12 deficiency guidelines for children in European countries.

[Nackapan in reply to Polo22]

Hope you have a good improvement after procedure.

[Dragonfly1962]

Don’t stress about the foundation tier GCSEs, one of my daughters took foundation not higher and after took btechs as well as A levels. She is now in first year of uni doing incredibly well.