help with bloods Please.: my first post... - Pernicious Anaemi...

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help with bloods Please.

daveD profile image
9 Replies

my first post hope some one can help with my blood test results. like many on these forums i get more good advice from fellow suffers. mine are thyroid, PA, pmrgca. results all say normal? I intend to try self medicating, i have looked at Jarrow lozengers, thinking I will need B12 + folate. hope this post make some sense. brain fog +. thanking you all for past info.Dave.

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LtAngua52 profile image
LtAngua52

Hi dave, it may be me but I can't really read these. Can you make it clearer or just type out results? 

daveD profile image
daveD in reply to LtAngua52

will do LtAngua52. had a go improving photo as you say with not much success.will have another bash later.Thanks for reply.Dave

daveD profile image
daveD in reply to LtAngua52

Here goes second attempt with results. serum vit B12 307 pg/mL (200-900)  Serum folate 11.3 ng/mL (3-12) Serum ferritin 63ng/mL (20-300) Serum TSH 0.16 mU/L (0.1-5.0) Hope that makes is A/ok. this brain fog etc really gets to me. it states that all are normal no action. Thank You. Dave.

Sleepybunny profile image
Sleepybunny

Hi,

I've assumed you are in UK.

Re your B12 result... I hope your GP is aware that it is possible to have severe B12 deficiency with B12 blood levels that are normal range as yours appear to be...see document links below. The documents make it clear that people who are symptomatic for B12 deficiency should be treated even if b12 blood levels are normal range.

UK B12 Treatment Info

1) BNF (British National Formulary) chapter 9 Section 1.2

2) BCSH Cobalamin and Folate Guidelines

3) See Management section in link below for treatment info based on BNF.

patient.info/doctor/pernici...

Symptoms

What symptoms do you have? See Symptoms lists below

b12deficiency.info/signs-an...

pernicious-anaemia-society.... See Symptoms checklist

UK B12 Documents/articles

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226 Useful summary points

Google "BCSH Cobalamin and Folate Guidelines"

This document came out in 2014. I read the whole document and gave a copy of it to my GPs. Unfortunately some GPs may not be aware of this document and may be relying on local NHS B12 guidelines, soem of which have not been updated for a number of years.

B12 books

What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency by Martyn Hooper

Could it be B12?: An Epidemic of Misdiagnoses by Sally pacholok and JJ. Stuart

UK B12 websites

pernicious-anaemia-society.... 01656 769 717

PAS lifetime membership costs £20.

b12deficiency.info/

b12d.org

martynhooper.com/

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

daveD profile image
daveD in reply to Sleepybunny

Thanks Sleepybunny. yes UK. I have looked at some of the symptom chqe  lists and my score for all is very high.I will scroll through them again from your list. I find it hard to spend to long reading before my eyes start getting very heavy, Take Care, Dave.

LtAngua52 profile image
LtAngua52 in reply to daveD

Can't add any more info, sleepybunny has it all covered! But yes, your b12 is definitely not normal no action! Gp's are not good at adhering to the guidelines, I hope yours will after showing them the documents. A generally a level above 500 pmol/L will prevent neurological damage and near to the 1000 mark to prevent cognitive impairment is best. 

A lot of people end up self medicating because odpf doctors lack of knowledge, myself included. I started off with b12 sublingual lozenges and am about to start self injecting. I hope you get help from your gp instead. He may refer you for more tests. Good luck! :-)

daveD profile image
daveD

Thank you both for replying. I feel it is time to go for self medication, getting no where with medics. I get a little bit piddled orf when in answer to my point on fatigue, brain fog etc : well you are getting older: I will try the Lozenges, not sure about folate. thanks again girls. it is a case of  onwards & up wards. just a thought LtAangua52  can I ask if the Lozenges worked for you. Dave.

Sleepybunny profile image
Sleepybunny

Hi Dave,

As  LtAngua52 says there are other tests that can be done to help establish whether or not you are B12 deficient. Some of these can be affected if you are already supplementing with B12. These tests are available privately if GP is unable to order them. See links below.

b12deficiency.info/b12-test...

A blood smear or blood film can also be useful.

patient.info/doctor/periphe....

labtestsonline.org.uk/under...

b12deficiency.info/what-to-...

b12deficiency.info/b12-writ...

This link has ideas for writing to GP if unhappy with treatment.

"I have looked at some of the symptom chqe  lists and my score for all is very high"

I found the PAS helpful to talk to. Contact details in above post. They usually respond within a few days to a phone message and can point you to useful info.

FBC (Full Blood Count)

Your list of blood results did not include a FBC (Full Blood Count). There can be useful clues on a FBC as to whether B12 deficiency is a possibility. B12 deficiency in some cases can lead to macrocytosis (enlarged red blood cells) so can Folate deficiency. High MCV and High MCH can indicate the possibility of macrocytosis.

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

patient.info/doctor/folate-...

patient.info/doctor/full-bl...

labtestsonline.org.uk/under...

clivealive profile image
clivealiveForum Support

Hi daveD  

If you decide to supplement make sure you get your folate (b9) levels up at the same time as the two work together.

How are Dozy. Beaky, Mitch and Titch by the way? Bet you've been asked that before!

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