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Pernicious Anaemia Society
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Wahey my test results are in!

Wahey my test results are in!

So 10 days of waiting I finally get my test results printout... I know it’s close to xmas but would love anyone’s feedback.

1) i seem to be in low range or just below for some of these things so I should supplement with iron and b12?

2) Can I get away with 3000iu vit D for a few weeks instead of the loading high doses as vit D is 50- And needs to be 75 to be replete.

I had loading doses last year as my results were barely registering on the test.

3) Anything else I’ve missed? I need to up my folic acid as well as preparing for ivf

(I’m autoimmune Hypothyroid/hashimotos and have PCOS too)

18 Replies
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Hi,

I've assumed you're in UK. I'm not medically trained.

Your B12 is below range 175 (180 - 700ng/L), ferritin within range but not very far up range.

Were you given an IFA Intrinsic Factor Antibody test? IFA test can help to diagnose Pernicious Anaemia but IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.

Do you have B12 deficiency symptoms?

B12 Deficiency Symptoms Lists

pernicious-anaemia-society.... See Symptoms Checklist PDF on right of page

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Do you have any risk factors for developing PA and B12 Deficiency?

Do you eat a diet that is rich in B12 eg meat, fish, shellfish, eggs , dairy, products fortified with B12?

If yes then diet becomes less likely as a cause of low B12 and an absorption problem becomes more likely.

Risk Factors

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

UK B12 documents.

If you're in UK, I'd suggest reading all of documents below.

BMJ B12 article

Emphasises that people in UK who are symptomatic for B12 deficiency should be treated even if B12 level is within range.

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. Makes it clear that a person who is symptomatic for B12 deficiency shoudl have an IFA test and start initial b12 treatment.

BNF Chapter 9 Section 1.2

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

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

Link about What to Do Next if B12 deficiency is suspected.

b12deficiency.info/what-to-...

Links about blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count

I can't see results for a full blood count in your photo.

labtestsonline.org.uk/under...

Folate Deficiency

patient.info/doctor/folate-...

Blood film

labtestsonline.org.uk/tests...

Iron Studies

I noticed that there are exclamation marks against transferrin and transferrin saturation. These marks mean that the lab that carried out the test thinks the GP should take notice of them. What has GO said about these results?

labtestsonline.org.uk/tests...

PAS (Pernicious Anaemia Society)

PAS can give support and info about PA.

pernicious-anaemia-society....

+44 (0)1656 769 717 answerphone

B12 blogs

There may be stories relevant to you.

Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Lots more B12 info in pinned posts on this forum.

B12 and Fertility

A link about how B12 deficiency can influence fertility.

b12deficiency.info/male-and...

B12 and Pregnancy

b12deficiency.info/b12-and-...

Unhappy with treatment?

Link about writing letters about B12 deficiency to GPs.

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/health/

HDA patient care trust

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

hdapatientcaretrust.com/

I wish you good luck.

Reply

Hi sleepy bunny- thanks for your reply. Wow that’s a lot of info- I will try and get through it over xmas.

Sorry I forgot to mention my other symptoms and conditions which I’d previously posted about;

I am autoimmune Hypothyroid (hashimotos ?)

I have PCOS

And I am undergoing frozen ivf cycle in a few months.

I’m treated with 125mcg thyroxine and my tsh is usually around 2mark.

But I have had a host of new and worsening symptoms over past year; including fatigue, dizziness, pulsatile(?)/tinnitus, vertigo and motion sickness to varying degrees... that’s what led me to think it was b12 deficiency. As my April results showed normal iron levels.

I have had severe vit D deficiency in past and my results again show low as I haven’t taken a high daily dose recently (ran out).

I didn’t ask for IFa test for PA as GP couldn’t get me off the phone fast enough. So thought if b12 is low I might do the test privately among t3 thyroid tests too.

Thanks again :)

Reply

Hi again,

There is a very active Thyroid UK forum on HU. Probably worth putting any thyroid results on that forum.

Marz who posts on this forum knows about thyroid problems so may be worth searching for her posts.

"I didn’t ask for IFa test for PA as GP couldn’t get me off the phone fast enough"

Sadly some people on this forum find that in UK (and sometimes other countries ) B12 deficiency is not as well understood as it could be. I think it pays to do some homework on B12 deficiency.

My understanding is that in UK, a person who is symptomatic for B12 deficiency and/or low in B12 should not have to ask for an IFA test but that it should be done as a matter of course.

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Hi, yes the Thyroid forum is brilliant too/ they actually referred me here to get more info on blood test results.

Sadly in UK a lot of things are poorly understood and/or ignored.

It’s just a conveyor belt of medicine... get you in and out as quickly as possible

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Getting B12 - TSH - VitD levels optimal could help with fertility too 😊

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Thanks marz,

Based on my above results do you think 3000iu vit D (&k) daily would be enough?

And a good Vit B supplement?

I don’t think I have PA but I might have a slight absorption issue... plus diet changes may have contributed to the deficiency.

Since levels aren’t too low I don’t think I need injections? I had takena multivitamin the day before the test but don’t think it contained biotin.

Reply

Am just off out so will reply in the morning. Things are not dire but could be better .... :-)

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May I ask what you mean by diet changes?

(I eat plenty of meat even liver & my B12 is still low)

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Hi spare ribs,

I cut out a lot of grains and cereals and dairy (subconsciously!)and have possibly left out my main sources of these vitamins.

I should have known when I started craving liver lol.

I certainly do think I have absorption issues/leaky gut or a host of other problems leading to all round nutrient deficiencies. I’m not entirely sure whether it’s all autoimmune - PA/coeliac etc but since I have hashimotos I could Wel have another.

If I can test for these privately I think il do that first to get to the bottom of it.

Time is sort of against me due to ivf cycle starting in next few months. I can’t hang around for the NHS

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if you have cut grains out then there is no point checking for coeliacs. the test for PA gives false negatives 40-60% of time(depending on test method) so a negative is a long way from proving you don't have PA. worth ruling out h pylori/ sibo instead but not sure about private testing for those

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Hi again,

"I might have a slight absorption issue."

PA, Coeliac disease, H Pylori infection can lead to B12 absorption problems. See section on Risk Factors in my post above.

Coeliac UK

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

NICE guidelines for Coeliac disease specify that anyone with unexplained B12. folate or iron deficiency should be tested for Coeliac disease.

nice.org.uk/guidance/ng20/c...

"I don’t think I need injections?"

Some causes of B12 deficiency need lifelong B12 injections but some causes can be temporary eg diet.

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Thanks!

I have wondered for some time if I had coeliac too but I’m thinking against it now- although if that’s the guidelines it might justify me asking the GP!

Sorry my Q regarding supplements vs injections is whether I could get right amount of b12 via supplements or only through injections?

I guess it depends on absorption!

I think I’m flagging with all the differential diagnoses... trying not to be a hypochondriac but also concentrating my efforts to my biggest issues.

I think I’m just going to have to throw everything at it with supplements and private testing. Go surgery is only taking emergency appointments for the whole holiday period- I doubt I’ll get anywhere (!)

Thanks again for all your help- sorry to be a nuisance with all the Qs ☺️ I promise this will be the last (!)

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Please ask as many questions as you want.

"I think I’m just going to have to throw everything at it with supplements"

The potential problem with self treating before a diagnosis is that it can make it very difficult to get a diagnosis. See next link.

b12deficiency.info/b12-test...

Perhaps your GP would consider ordering an IFA test if he looks at a copy of the flowchart in my first post above.

If you have PA, Coeliac disease or some other problem affecting absorption then I think GP should try to find out what it is.

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Ok you’ve convinced me- I think I had given up on GP and was happy to think I could self treat. It seems part of the reason I haven’t started supplementing yet- was going to do private blood tests first. Will get cracking with it- new resolution!

Thanks again

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saya was that the first time you had B12 levels checked? showing a fall would be good evidence that you have an absorption problem

It doesn't sound as if you are vegetarian or vegan which means that the deficiency would be an absorption problem. Highdose oral is going to be very slow in correcting the deficiency (if it would work at all) - which is why you need injections to get the levels in your blood up quickly - high level oral can be effective at maintaining levels where you then need them to be - but again it doesn't work for everyone.

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Thanks gambit.

Yes this is the first time I’ve had it checked although my MCHC (or whatever it is) which was tested in April pointed to a b12 deficiency that wasn’t picked up by GP.

I found it myself and made me research it. I’ve had symptoms of b12 deficiency for almost a year I think.

The nurse said I didn’t need any treatment for the b12... and on the picture above it just says repeat in 3months.

No I’m not vegetarian, and eat enough meat and eggs (less dairy) so yes it’s probabbly an absorption issue too... I was thinking of high dose oral supplements and if in 3months it didn’t improve that would help my case with GP?

But maybe that’s too long to take a risk- and I need injections for now.. ah it’s kind of overwhelming.

How long does it take for b12 levels to stabilise? If I did a private blood test in a month would that be long enough to show a change?

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high MCV and high MCH are indicative of B12 deficiency. MCHC is a ratio between the two so would be not necessarily definitive of B12 and could be affected by an iron anaemia.

If you have neurological symptoms - eg tingling in hands and feet - I'd be inclined to back to your GP and ask for injections.

Serum B12 isn't a gold standard test and will miss 25% of people who are actually deficient if taken as a single measure. I don't have a specific US reference for this but there are lots of papers on diagnosis and treatment of B12 deficiency on pubMeds in the US that cover the limitations of the test.

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Thanks gambit- you actually replied to my original post of my results in April to see if it could be PA/b12. I can’t remember exact figures but it was suggested multiple times that it could be b12/ferritin.

Yes I have a lot of symptoms and neurological ones too.

Ugh it looks like I’m going to have to chase up my Gp after all 😔

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