Blood test results , platelet distribution width??

[Purpleloulou27]

Hiya, I am low in b12 and SI EOD at the moment. Have been going through my blood results and have noticed my Platelet distribution width is always really high(35-55%) and my plateletcrit is always really low. I’m not sure what these are as I notice they aren’t usually in others results. Any input? I don’t have much trust in my GP and he recently stopped by b12 without discussing with me and currently have an ongoing complaint. Many thanks

[Sleepybunny]

Hi,

Some links that may be helpful....

"I don’t have much trust in my GP and he recently stopped by b12 without discussing with me and currently have an ongoing complaint"

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates, people can base own letters to GP on.

Point 1 is about under treatment of B12 deficiency with neuro symptoms present.

Point 5 is about being symptomatic for B12 deficiency with an in range serum B12 result.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.

Keep copies of any letters sent or received.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Local MPs/devolved representatives may be worth talking to if struggling to get appropriate treatment.

members.parliament.uk/

A few people go to the press but this is not an easy option.

Newspaper article about patient struggling to get B12 treatment in Scotland

eveningtelegraph.co.uk/fp/i...

And a positive follow up story

eveningtelegraph.co.uk/fp/b...

News story about MP in Scotland who raised concerns about treatment of patients with PA

douglasross.org.uk/news/mor...

PAS news item about contacting NHSE (NHS England) about treatment concerns during pandemic

pernicious-anaemia-society....

PAS have some useful leaflets/articles that PAS members can access.

Some can be accessed by non members.

pernicious-anaemia-society....

UK B12 documents

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...

Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down the local guidelines for your part of UK and compare them with BNF, BSH and NICE CKS links.

Some local guidelines may have an additional statement covering treatment during pandemic.

Some local guidelines have been posted on this forum so may be worth searching forum posts for "local guidelines" or try an internet search or submit a FOI (Freedom of Information) request to CCG/Health Board asking for a copy.

PAS news item on BSH guidance on B12 deficiency treatment during pandemic.

pernicious-anaemia-society....

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.

Accessing Health Records (England)

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

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

patients-association.org.uk...

If you have a PA diagnosis or suspect you have PA, worth joining PAS who can offer support and pass on useful info.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

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

I've written some very detailed replies in the threads below with lots of B12 info you might find useful causes of B12 deficiency, books, articles, UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.

[Purpleloulou27 in reply to Sleepybunny]

Thankyou for all that information! I will take some time and have a good read through the links. I am a member of PAS already, I joined a couple of months ago they have been useful too. Thanks again x

[FlipperTD]

Scientist, not medic.

None of what follows should be considered as advice, and probably won't be that helpful!

What exactly are the 'Plateletcrit' [Pct] and the 'PDW'? Here goes, and it's a bit technical.

Platelets are tiny, produced in the bone marrow, from megakaryocyte cytoplasm. They stay in circulation for a few days. When they are released from the marrow, they're big, and as they mature, they get smaller. So if for any reason you have increased platelet turnover, your MPV [mean platelet volume] is likely to be higher because you have a population of younger platelets. MPV is analogous to MCV; MCV is for red cells. The 'crit' in Haematocrit is othewise known as the 'packed cell volume'. It is derived from the MCV and the red cell count.

Haematocrit = MCVxRBC. Plateletcrit = MPVxPlatelet count.

Distribution Widths: RDW for red cells, the lower the value, the more homogeneous the population. PDW for platelets isn't quite as simple, but the principle remains the same.

Now it gets more confusing. The normal ranges for platelets and MPV are confusing, because there is an inverse, non-linear relationship between Platelets and MPV. [sorry.]

To make it even more complex, blood samples are taken into an anticoagulant for analysis. The anticoagulant of choice is 'EDTA' and should be approx 1 mg per ml of blood. If less than that, the platelets clump. If much more than that, then other problems follow. Platelet volume is difficult to measure [technically]; more so than MCV, but that's not entirely simple either.

Platelets change volume on storage. Consequently, MPV and Pct aren't entirely reliable because of uncontrolled artefacts, and it's hardly surprising that many clinicians won't understand the technicalities of them.

A consultant haematologist with up to date laboratory knowledge might be able to explain your findings!

Good luck.