Throwing an absolute fit at Haematologist!

[SarahFerguson]

Son now 19, Gastritis diagnosed Nov last yr, family history of PA. Haemo appt today confirmed low B12 MMA 216 (Holo 31 Dropped since last tested,) symptoms, breathless,fatigue,recurrent mouth ulcers... got result of Homoscytiene today and on screen it said "increased level, indicates renal/Folate/B12 deficiency. All I got told was he would try B12 tablets to see if he has absorption problem and retest blood in 3 months . Any suggestions would be great folks! Appt was 10:00am this morning and I'm still raging!

[Sleepybunny]

Hi SarahFerguson,

Have you written a formal letter to haematologist (not just the GP) listing concerns, symptoms, useful extracts from B12 documents, blood test results, family history , bullet points as to why PA is suspected, consequences of undertreatment... perhaps with a request to place a copy in medical file?

Apologies but I'm too exhausted to look through your previous threads to see what you've previously written.

I would add that writing letters can irritate some doctors and affect doctor/patient relationship.

Was the diagnostic pathway outlined in flowchart from BSH Cobalamin and Folate Guidelines followed?

stichtingb12tekort.nl/weten...

Have PAS got any suggestions?

pernicious-anaemia-society....

PAS tel no [phone]

My Experience

When I had exhausted every possibility in getting NHS B12 treatment, I turned to self treatment as an absolute last resort.

Unhappy with treatment (UK info)?

Have you considered contacting HDA pct? They offer free second opinions on medical diagnoses and treatment .

hdapatientcaretrust.com/

CAB (Citizens Advice Bureau) can offer support to people unhappy with NHS.

citizensadvice.org.uk/healt...

Letters to GP/consultants about B12 deficiency

b12deficiency.info/b12-writ...

CCGs (Clinical Commisioning Groups)

nhs.uk/servicedirectories/p...

Can your MP offer support?

parliament.uk/mps-lords-and...

Copies of Medical Records

Has your son got a complete set of his medical records?

nhs.uk/NHSEngland/thenhs/re...

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

nhs.uk/chq/Pages/2635.aspx?...

If there is any possibility of complaints in future, I think it is wise to get a set of records before starting any complaints procedure. Sometimes records can get lost .

It can be very illuminating to see what has been written in past. There may even be comments about the family/your son thinking PA may be a possibility.

If there are comments in records your son disagrees with, GPs/consultants don't have to change them but your son would have the right to have his own response attached.

Can't get a diagnosis?

There's a story on Martyn Hooper's blog about difficulty in getting a diagnosis

martynhooper.com/2017/07/01...

PAS leaflet "An Update for Health Professionals" about PA can be printed off by PAS members.

Are you able to consider going to a private doctor? This is no guarantee of a different outcome though.

"All I got told was he would try B12 tablets to see if he has absorption problem and retest blood in 3 months "

I know some on forum have considered pointing out to doctors the consequences of not treating b12 deficiency adequately eg potential spinal damage. There is an article about SACDSC (Sub Acute Combined Degeneration) in PAS library section available to PAS members.

bmj.com/content/349/bmj.g5226

BMJ summary emphasises need to treat symptomatic patients to avoid neuro damage.

UK NEQAS B12 Alert

Link to NEQAS statement in next link.

b12deficiency.info/b12-writ...

I am not medically trained just someone who has struggled to get a diagnosis.

[Sleepybunny]

Just to add that everyone has the right to request a second opinion although GPs don't have to grant the request. I have occasionally offered to pay for a referral if I thought cost was an issue likely to deter GP from referring me.

Could your son ask to see another haematologist?

Other Consultants/specialists

Sometimes PA can be diagnosed or evidence of PA found, by other consultants.

Has your son seen any of the following?

Gastro-enterologist for gastro symptoms? Has he ever had an endoscopy? I think this can spot gastritis associated with PA.

nhs.uk/conditions/gastritis...

Neurologist for neurological symptoms?

The person who knew most about B12 deficiency out of all the consultants I saw, was a neurologist. He at least raised the possibility of B12 deficiency with my GPs. I did see other neurologists who seemed uninformed about B12 though.

The neurologists I saw, did not carry out neurological examinations on me with my eyes closed which I think they should have done, and I don't remember having a romberg test.

Proprioception problems (loss of awareness of body in space) can be associated with B12 deficiency.

I used to have problems with balance if I got up at night and if someone walked directly towards me so I lost sight of my surroundings, I would start to wobble. Yet another reported symptom that my GPs at time showed no interest in (sigh...)

Dentist for oral symptoms eg mouth ulcers?

Ophthalmologists for changes in eyesight?

Opticians may also be helpful to talk to. I asked my optician to check for any damage to optic nerve when it became clear that B12 deficiency was a possibility.

nhs.uk/NHSEngland/AboutNHSs...

Podiatrist for neuropathic symptoms in feet?

I think that podiatrists in UK are allowed to prescribe B12.

nhs.uk/NHSEngland/AboutNHSs...

martynhooper.com/2016/03/06...

Rheumatologist for joint problems?

The one I saw did not seem very well informed about B12 deficiency and I got labelled with fibromyalgia even though I raised the possibility of B12 deficiency.....strange how once I got B12, my fibro symptoms improved ......

Endocrinologist for metabolic/glandular issues

Endocrinologist may want to test MMA, Homocysteine.

Urologist for bladder problems?

When my symptoms were at their worst I was continually getting up in the night to urinate.

Cardiologist for heart problems?

I had periods of palpitations and heart pain.

B12 deficiency affects so many body systems that there are probably other specialists I have not thought of.

[Sleepybunny in reply to Sleepybunny]

Also audiologist for problems with hearing eg deafness/tinnitus?

I think sometimes the route to diagnosis can be a very slow process of building up evidence. It shouldn't be though...

I mentioned the possibility of B12 deficiency to most of consultants I saw.