Further on from previous post - Pernicious Anaemi...

Pernicious Anaemia Society
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Further on from previous post

katie111
katie111

Hello I posted around 2 months ago regarding my blood count results attached below in picture. I went back to the doctors today to discuss the results and compare to older results (I have typed below) which weren’t available before as I’d recently changed surgeries. The typed results are before I had 3 b12 injections. The pictured results after 6 months later. I’ve been feeling symptoms a lot recently not that I’m sure they’re related (as I do have a baby and a toddler) but I’ve been feeling more tired and weak then usual, more emotional and shakey. Sorry for TMI but having much heavier periods then normal for the last few months? I sometimes feel like I have morning sickness even though I’m not pregnant, where I feel sick and can’t stomach eating but feel physically weak.

My gp prescribed 3 b12 injections over the next 3 weeks, and taking folic acid tablets. My mum came with me to the appointment, and she thinks I should have been offered 6 injections?

I have also been given a form to get blood tests for serum iron, transferrin saturation studies.

Any second opinions please?

These were my results from September 2017 while pregnant:

Parietal cell autoantibodies (JS1725) - normal

Negative

!Active vitamin B12* (JS1725) 21 pmol/L 25-108pmol/L

Liver function test (JS1725) - normal

Serum total protein 63g/L 61-79g/L

Serum alkaline phosphatase 75 u/L - 30-170

Serum total bilirubin level 4 umol/L 3-20umol/L

!Serum albumin 30g/L 35-50g/L

Serum ALT level 8 u/L 7-35u/L

Serum gamma GT level 8 u/L <38u/L

Serum B12 84 ng/L 130-800

Serum Folate 2.4 ug/L 4-20

Serum TSG level - normal

MCV - raised (103)

Thanks for reading 😊

4 Replies
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Foggyme
FoggymeAdministrator

Hi Katie111. About your recent blood tests:

Folate level of 3.5 in the reference range 4.00 - 20.00 shows you have a Folate deficiency (still).

Others results are within the reference ranges BUT it's where the results are in the range that counts so...

Haemocrit is towards the top of the range - high incidence of macrocytic (large) red blood cells

MCV is towards the bottom of the reference range - high incidence of microcytic (small) red blood cells

MCH is towards the top of the reference range - high incidence of macrocytic (large) red blood cells

RDW towards the top of the range - indicates mixed population of large and small red blood cells

What this means: the RDW showing the mixed population of both large and small red blood cells is in line with the other results: large red cells demonstrated in the haemocritc and MCH results and small red blood cells demonstrated in the low in range MCV.

So...the complicated mix of both small and large red blood cells is indicative of iron deficiency anaemia, folate deficiency and B12 deficiency.

MCV has dropped significantly from last time (103 down to 83) - you have more small red blood cells this time so evidence that you are becoming more anaemia. I suspect this is why your GP has ordered a full iron panel - gives more information about iron status in the body - so a good thing for them to do.

Your serum B12 level is currently 236 (130-800) - this is low in the range considering you have had three B12 injections. In addition, once injections have been started, the serum B12 (or active B12) tests are meaningless in terms of assessing the presence of B12 deficiency or the efficacy of treatment. Your GP should be assessing symptoms - and you have them - not looking at test results.

The blood picture above and your current (returning) symptoms are indicative of an ongoing absorption problem which is impacting on your body's ability to absorb (at least) vitamin B12, folate, and iron.

So...based on your previous post...first, can I refer you back to the advice given in Gambit62's earlier reply...'cause I would say the same here...

healthunlocked.com/pasoc/po...

A couple of pointers for you:

1) your mum is right. You should have had 6 x loading doses of B12 - and treatment for B12 deficiency (proven by your first active B12 test) should have been continued, together with investigations to try and determine the cause of,your deficiency.

2) when you were first diagnosed, if you had neurolgical symtpoms, you should have been prescribed an intensive regime of B12 injections (following the loading doses, injections every other day until no further improvement). This is crucial to enable optimum recovery and prevent potentially irreversible neurolgical damage. Not many GP's know about this. Treatment details included in a link to the BNF below - third paragraph down for neurolgical regime - not many GPs read that far).

3) ask your GP to treat you in accordance with the current BSCH guidelines (included in a link below). All doctors should be following these guidelines - not many have read them.

4) your GP should not refuse treatment on the basis of your current serum B12 levels. All the guidelines state that serum B12 testing is not required following commencement of injections (unless looking for low levels)....thereafter treat symtpoms, not blood results (information in BSCH guidelines in link below. Also links to information about problems with serum B12 testing etc).

Here come the links (also include a few others that might be useful):

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

bnf.nice.org.uk/drug/hydrox...

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines for the Diagnosis and Teatment of Cobalamin and Folate Disorders)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

In short, you have an already proven B12 deficiency - which for some reason your GP has only partially treated, then appears to have stopped. Despite having taken folate supplements, you still have a Folate deficiency and iron deficiency anemia also appears to be an issue.

Your iron deficiency anaemia may, in part, be due to menstrual blood loss BUT the pattern of deficiencies in other areas too points directly to absorption issues - as per Gambit's reply to,your earlier post. So...

Goodness only knows why your GP has not investigated this further and, more importantly, not continued with your B12 injections.

Yes... having to look after a toddler and baby is very tiring...but that won't give you absorption issues together with the symtpoms you are experiencing - so please don't let your GP tell you otherwise 😉😀.

B12 deficiency (from whatever cause) is quite complex and just a little 'scratching of the surface' here, so please do post again if you need more help and advice.

And finally...be good if you could take your mum or someone else with you to your appointment - GPs are often less dismissive and more attentive if there is a witness in the room - and someone to speak up for you if your GP stops listening.

Good luck...and please post again and let us know how you get on. Always good to hear how things are going.

👍

P.s. worth asking your GP to test vitamin D too...often a problem, especially when absorption issues present - and can make you feel very ill.

Thank you Foggyme for such a long thoughtful reply it’s really appreciated. I will definitely go back to discuss further (and take my mum who has been mentioning the Vitamin D for a while too!) and have a proper read of the links, thanks 😊 I will post updates.

Foggyme
FoggymeAdministrator
in reply to katie111

Hurrah for your mum. Good luck.

these idiots. I'm sorry but it just makes me so mad for you.

i had a b12 deficiency and vitamin D deficiency when i first went to doctor complaining of fatigue.

after i got injections i felt better but not well. i got a full iron panel and had serum iron of 69 and iron percentage saturation percentage of 21% both in range and doctor said they were fine. your look like they will come back worse. i then demanded testing for h pylori just to rule it out because i had done all my own research and joined this forum. i had to argue to get tested because i did not have the main symptom of heartburn. just nausea and could NOT eat prior to one pm and usually did not eat til after 3pm.

well, well, well....i was positive!!!

it took 2 rounds of antibiotics before i got a negative h pylori test!!! and you have a wait after antibiotic treatment is over for a minimum of 2 months before being retested to see if you still have it or not because the antibiotics might beat it back but not entirely kill it and it can recolonize, which takes time (therefore the 8 week waiting period).

after finally getting a negative test result my serum iron went to 109 and my iron percentage saturation went to 35!!!!

i knew it before the test. i felt like a million bucks!!! 10 days after i finished 2nd treatment, i suddenly had a desire to go for a walk and did so for 9 days before i CRASHED, super hard.

my comprehensive metabolic panel (cmp) prior to 2nd h pylori test showed my total protein at 6.3 g/dl (range 6.1 to 8.1) no big deal right, i mean the doctor didnt say anything about it getting low or anything.

well i was getting low and the exercise used it up and i suddenly had super blurry starburst vision, fatigue, brain fog, ect. it was awful.

h pylori reduces stomach acid. therefore proteins from meats is reduced. i had to start drinking protein shakes for protein until my stomach healed itself, which takes time.

i am fine now.

there are 3 different test methods for h pylori. some more reliable than others. please research pre testing requirements and get tested.

also, start drinking protein shakes. from what i have read the body can only absorb between 8-10g of protein per 60 to 90 minutes as there are only so many transporters. so drink appox 10g, wait 90 min, drink 10g more wait 90 min drink 10 g more, reapeat. when healthy, a person only needs anywhere from .4g protein per kilogram of weight to .8g p/kg depending on the source.

when low in protein you will need extra to improve.

protein satisfys hunger so it might feel like force feeding. i mixed in fruits to get vitamins.

best of luck.

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