B12 result 100: Hi I've just posted my... - Pernicious Anaemi...

Pernicious Anaemia Society

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B12 result 100

Lanvere profile image
14 Replies

Hi I've just posted my husband private blood results on thyroid uk and they have advised me to post them on this site for advice regarding PA I've made an appointment for GP but not till after Easter should he have a more urgent appointment any assistance would be gratefully received

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Lanvere profile image
Lanvere
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14 Replies
Galixie profile image
Galixie

Personally, if I had those results, I'd be begging for more immediate attention, but if he is able to wait a week, just be sure they immediately start to address the problems at that appointment.

You haven't posted the results of his complete blood count, but based on the fact that he is low on B12, Folate, and Ferritin, I suspect that he is very anemic by this point. Deficiencies in B12 and Folate will cause Macrocytic anemia, while a deficiency in Iron will cause Microcytic anemia. This is important because having both types of anemia at the same time (which is what I suspect here) will cause the MCV (Mean Cell Volume) to appear normal when it really isn't.

Moreover, having deficiencies in all three vitamins could be pointing to an absorption problem, so that needs to be investigated as well. They might check for Celiac disease when they test for Pernicious Anemia. It is always a bit concerning when a man's ferritin becomes low, since they don't experience monthly blood loss. The primary causes of low iron in men, when there hasn't been a trauma that involved blood loss, are either lack of absorption or internal bleeding (such as from an ulcer).

I don't know very much about the C-Reactive Protein result (CRP), other than it is a sign of inflammation and has been linked to increased risk of heart problems. Getting that down into the normal range would be helpful.

Lanvere profile image
Lanvere in reply toGalixie

Thank you for the advice I have just rescheduled his appointment for Monday at 4. He had not had a full blood count done just the thyroid + 10

Jose651 profile image
Jose651 in reply toLanvere

Good for you G.

Ask for a full blood panel and Vit D. Post the results on both forums for members to comment.

Jose651

Sleepybunny profile image
Sleepybunny

Hi,

His ferritin, folate and B12 are listed as Low (L).

Is he a vegan or vegetarian? I have read that a vegan or vegetarian diet can make dietary B12 deficiency more likely. If he isn't vegan or vegetarian then B12 deficiency due to diet is less likely.

Causes of b12 deficiency

b12deficiency.info/what-are...

B12 deficiency symptoms

Does he have any neurological symptoms? See links below. If B12 deficiency is left untreated or inadequately treated it can lead to permanent neurological damage.

b12deficiency.info/signs-an...

pernicious-anaemia-society....

Testing for B12 deficiency

b12deficiency.info/b12-test...

Has your husband had an IFA (Intrinsic factor Antibody test? This can help to diagnose PA but is not always reliable. People can still have PA even if their IFA test is negative.

FBC

Has he had a Full Blood Count(FBC)?

High MCV and High MCH on the FBC can indicate the possibility of macrocytosis (enlarged red blood cells). Macrocytosis can occur in people with B12 deficiency (but not always). It can also occur in people who have folate deficiency. Low iron can lead to microcytosis (small red blood cells).

In someone who has

1)iron defic

2)B12 and/or folate defic

their red blood cells may appear to be "normal" size on the FBC and a GP might miss problems.

patient.info/doctor/macrocy...

patient.info/doctor/pernici...

This link contains the recommended UK treatment for B12 deficiency in the Management section.

UK B12 websites

PAS

pernicious-anaemia-society....

01656 769 717

The PAS are helpful and sympathetic to talk to. Lifetime membership costs £20.

b12deficiency.info/

b12d.org

martynhooper.com/

UK B12 documents/articles

Recent UK documents make it clear that people who are symptomatic for B12 deficiency should be treated even if their B12 levels are "normal" range to prevent neurological damage.

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

List of useful summary points.

Google "BCSH Cobalamin and Folate Guidelines"

This UK document came out in 2014. I was told the NHS should be following it. Some GPs may not be aware of this document. I read it and gave a copy to my GP. Page 29 of this document is a diagnosis and treatment flowchart.

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

Coeliac disease

Has he ever had a test for Coeliac disease? I have read that because Coeliac disease can affect the gut, it can cause B12 deficiency.

coeliac.org.uk/coeliac-dise...

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

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

"having both types of anemia at the same time (which is what I suspect here) will cause the MCV (Mean Cell Volume) to appear normal"

A blood smear or blood film may show up both microcytic and macrocytic cells in someone who has iron deficiency anaemia and B12 deficiency anaemia. It might also show up hypersegmented neutrophils in someone with b12 deficiency.

As far as I know I don't think having a blood smear (aka blood film) is standard in someone with suspected B12 defic but a GP might consider it. It is probably available privately.

patient.info/doctor/periphe...

patient.info/health/full-bl...

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

labtestsonline.org.uk/under...

SAMBS profile image
SAMBS

hi Ginny, i don't live in UK now, left on 2008 all my problems except Hypothyroisism dx 2000. have since been diagnosed here in France and now have Hashimotos, the Hypo T autoimmune condition. in October 2012 a Haemo told me I have a blood disorder, platelets and leucocytes are the blood test results you need to look at, for that condition, as well as Free T3, Free T4 and Vit B12 for thyroid.

my white cell count is currently 69 000 (150 000 - 400 000) being my norms. they did drop as low as 45 000 but in last 6 months I have got them up to 50.... then 52......and at last blood test in March .......69,000 - by taking a natural supplement called ArkoRoyal, made by ArkoPharma. you will find Arko on the web.

I had a blood loss 3 years ago this month because I had an aneurysm and Brain Haemorrhage! Call it fate or luck, it was not my time to go and I survived after a 4/5 coma. I could put it down to my thyroid on some respects because As a baby I had a tuberculosis infected gland in my throat/neck that was removed, affecting my HTP axis, and probably the Thyroid specifically. now I have 2 Autoimmmune conditions, with symptoms that mainly relate to my Thyroid.

That could be one reason TUK referred you to here, I have posted a lot on there about my own research into my health from birth. I wanted to know why I had the aneurysm and haemmorhage in my brain all out of the blue, when I hadn't been ill or feeling ill! that occurred 3 months after my 'blood disorder' was dx by the Haemo and that consultation came because of my usual Thyroid TSH only blood test a few months earlier. Perhaps my TSH had shot up, I don't know now, I don't live in the same area I did 3+ years ago. I'm also 69 this summer.

I have spent the last 6/7 months researching my own health history since birth in 1947. health records were not kept or passed on in those earlier years as they are only just starting to be now .

so may I suggest you quiz your husband and his parents or other family members if possible. Even things like childhood illness and infections have consequences - did your husband have mumps as a child - said to be the best time to have it to prevent infertility.

I don't want to scare you with my account, it's what happened to ME, we are ALL individuals with different health histories and when health starts to become bizarre for no "apparent" reason, that's when we need to start at the beginning......

I do hope your husbands next blood test will be OK, if not looking good, take as much as you can of his and his families health history (genetics and DNA do count) to discuss with the Doctor and a Good Haemotologist and Endocrinologist if necessary.

I am not medically qualified, but at the rate my own health research is going, anything I can pass on by way of suggestions, hints or tips I am more than willing to do. it's purely by chance this evening I saw your post when I came back onto HU, I'm not even a regular member of PA, I've dipped into it occasionally, to see if what relates to me does possibly also to others.

if you want to pm me, feel free. I'll be back online later this evening. Thinking of you and your husband ..... Sambs. x

PS - sorry just looked closer at the blood test results Vit B12 is essential and his figure is way off Mark. look at TUK again, there are many suggestions on there about taking methlycobalomin and VitB12, it can be ordered through Amazon.

Gambit62 profile image
Gambit62Administrator

Suggest that you go to the appointment armed with the following

a) checklist of symptoms

pernicious-anaemia-society....

b) BCSH guidelines - particularly the two protocols for treatment if there are any neurological symptoms - most GPs aren't aware there are different protocols if people have neurological symptoms - page 8

bcshguidelines.com/document...

c) You cannot overdose on B12 - the treatment for cyanide poisoning is 5000x the amount used to treat B12 deficiency administered intravenously over 15 minutes, with a follow up dose after 30 minutes if required ... just mention that for the future in case you get any misconceived concerns about overdosing thrown at you.

d) you need to have both the folate and the B12 deficiency treated - previous guidance was a bit ambiguous and was often mis-understood as stating that a B12 deficiency should be treated in preference to a folate deficiency. However, the body needs folate to absorb and use B12 so not really much point in loading the system with B12 without folate. Definitely the case that you should not be treated just for the folate.

Hi Ginny

The raised CPR is a sign of inflammatory disease and the other results indicating auto-immune and malabsorption problems . Coeliac disease is a possibility , if undiagnosed eventually results in anaemias and lots of other issues such as neurological problems and osteoporosis as well as gastrointestinal problems . Make sure ALL the tests are carried out for Coeliac as the initial antibody test can give a false negative .

That ferritin level of 6.7 is very low . Your hubby needs to get his vitamin b12 levels up first ( methylcobalamin is the best type as it is already in a converted form ) . Give it a few weeks of  getting his b12 levels up and then start using methylfolate ( not folic acid ) Make sure he is eating plenty of folates in his diet ( raw cabbage and kale , almonds , walnuts , watercress , comfrey ) . Looks like he needs iron too . I know some people on this site have a problem with blackstrap molasses as an iron source but it also contains other nutrients and minerals including trimethylglycine and b6 . Don`t knock it till you`ve tried it !!

Lanvere profile image
Lanvere in reply toillnesswhatillness

Thank you for reply .., doctor would not prescribe anything till results of her blood tests were in they arrived last Wednesday but will not be read by her till next week so he had started the B12 supplement that you have recommended.  What strength methy folate should he take ?

illnesswhatillness profile image
illnesswhatillness in reply toLanvere

It would be best to get the b12 level up first with methylcobalamin , then perhaps 100% daily need of methylfolate after a few weeks . You could always get the folate levels up naturally with raw cabbage and kale , watercress , almonds and walnuts , comfrey .

Lanvere profile image
Lanvere in reply toillnesswhatillness

Ok thanks x

fbirder profile image
fbirder in reply toLanvere

You almost certainly don't need methylcobalamin. Hydroxocobalamin works just as well, if not better, for the vast majority. Some people who don't understand science will try to persuade you otherwise - they are wrong.

Hydroxocobalamin is the natural form of B12 that is found in foodstuffs.

Some people will also recommend you take poisonous plants - like comfrey. This contains pyrrolizidine alkaloids which are poisonous to the liver.

Sleepybunny profile image
Sleepybunny

Diagnosis Difficulties after self treatment

One thing I have learnt from my own experience is that self treatment with B12 can make it very difficult to get a diagnosis. I did self treat but only after years of trying to get B12 treatment from NHS without success.

This links mentions the difficulties of self treatment with b12 without first having a diagnosis.

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

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