Help with Blood Test Results Please - Pernicious Anaemi...

Pernicious Anaemia Society

31,811 members22,936 posts

Help with Blood Test Results Please

Mrss25 profile image
11 Replies

Hi there

I was hoping to see if anyone could help me with my latest blood test results please:

Active Vitamin B12 67 pmol/L (Range 25-108)

Homocysteine 14.0 (range 3.7-13.9 umol/L)

Methylmalonic acid 0.14 (Range 0.29 umol/L)

Intrinsic Factor 0 (Range 0-6 U/mL)

Vitamin D 37 (Range 76-250 nmol/L)

Serum Folate 5.01 (Range 3.89-26.80 ng/ml)

Vitamin B12 349.9 (197-771 pg/ml)

I am not on any supplements or thyroid medications, and the tests were taken before 9AM and I had only had water, no food.

Many thanks

Written by
Mrss25 profile image
Mrss25
To view profiles and participate in discussions please or .
Read more about...
11 Replies
Sleepybunny profile image
Sleepybunny

Hi,

I can see that the Homocysteine result is above range.

Link about homocysteine test

labtestsonline.org.uk/tests...

Your Intrinsic Factor Antibody (IFA) test at 0 would be considered a negative result.

Does your GP know it is possible to have PA (Pernicious Anaemia) even if IFA result is negative?

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

PAS article on Testing for PA

pernicious-anaemia-society....

Have you had a gastrin test?

It can help to diagnose PA in some cases.

Gastrin test

labtestsonline.org.uk/tests...

Although your folate is within range it is not very far up the range.

Have you asked GP if you would benefit from taking a folate supplement?

In a nutshell, if you have the symptoms of B12 deficiency, in UK you should be treated for B12 deficiency even if your serum B12 result is within normal range.

Try to track down the local guidelines on treatment/diagnosis of B12 deficiency for your CCG/Health board and compare them with BNF/BSH and NICE CKS links below.

Search forum posts using terms " local guidelines ", try an internet search with "name of CCG B12 deficiency guidelines" or submit a FOI request to your CCG asking for a link to or copy of the guidelines on treating B12 deficiency that your CCG uses.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and Folate deficiency

cks.nice.org.uk/topics/anae...

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

Your Vitamin D level is below range.

What has your GP said about this?

Have you been advised to take a supplement?

NHS link about Vit D

nhs.uk/conditions/vitamins-...

Link about vitamin D deficiency

patient.info/bones-joints-m...

Your CCG/Health board is very likely to have local guidelines on treating Vitamin D deficiency so I suggest you track these down.

In a nutshell in UK, if you have the symptoms of B12 deficiency, you should be treated even if serum B12 is within range. See summary below.

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Have a look at Point 5 in above link which is about being symptomatic for B12 deficiency with an in range serum B12 result.

If you have time, I suggest you have another look at the detailed info and links I left on your thread " B12 levels and symptoms" from 6 months ago.

Mrss25 profile image
Mrss25 in reply to Sleepybunny

Hi thank you very much. I did read your info you sent me before which was very helpful. I saw my gp as I have tinnitus, head pain, heart palps, tired, fatty liver, dizzy head, chest pain and he said my b12 was fine. I feel awful though. He told me to get my own vitamin d3 so Im going to carry on taking them. He will not treat me as vitamin b12 deficient. He has put me on beta blockers for the heart palps.

Sleepybunny profile image
Sleepybunny in reply to Mrss25

Hi,

"He will not treat me as vitamin b12 deficient."

Do you have symptoms consistent with B12 deficiency?

If yes, have you written a letter to your GP asking politely for a trial of B12 injections?

Letters are harder to ignore than verbal requests in my opinion.

The letter writing link in other reply has letter templates to help people compose their own letters.

If you suspect PA, worth joining and talking to 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.

PAS website has lots of useful leaflets to print out. Perhaps your GP would like one?

pernicious-anaemia-society....

Might be worth pointing out to GP that PAS website has a section for health professionals which discusses diagnosis and treatment of PA.

pernicious-anaemia-society....

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

I had over 40 typical symptoms of B12 deficiency and a previous below range serum B12 result but NHS at that time refused to treat me. I resorted to self treatment as I had by then developed dementia type symptoms and spinal symptoms.

Mrss25 profile image
Mrss25 in reply to Sleepybunny

Many thanks for all that info....i mentioned that I have a few neuro symptoms that are getting worse, and ive been cleared of everything else, even had head mri, fatigue, poor nails, nausea, weight loss, inflamed liver and cleared of everything else, dizziness, bad headaches and blurred vision

Nackapan profile image
Nackapan

Was your iron tested?Ferritin?

Your doctor should test everything

Mrss25 profile image
Mrss25 in reply to Nackapan

Hi yes, iron is 18.0 and ferritin is 127.2

mickeymouse42 profile image
mickeymouse42

Did your GP do all the tests? It's unusual for a GP to have access to the Active B12 test.

Active Vitamin B12 67 pmol/L (Range 25-108)

Vitamin B12 349.9 (197-771 pg/ml)

The Serum B12 is not considered to be very accurate and the Active B12 is recommended - both are in the "normal" range.

Homocysteine 14.0 (range 3.7-13.9 umol/L)

This is high but I guess the GP is considering the other results as well.

As people say, it's the symptoms that matter but the trouble is that the symptom of fatigue for example can be associated with other conditions. For example, thyroid disorders can lead to chronic fatigue. Have you had the thyroid tests? Perhaps ask your GP to repeat the Homocysteine test as it is high.

Mrss25 profile image
Mrss25 in reply to mickeymouse42

Hi I had a private test done, and my thyroid was also tested and came back clear. My gp has said that the raised Homocysteine level can be due to vitamin b being deficient. My folate was alittle low too according to him

Sleepybunny profile image
Sleepybunny

Hi,

"My gp has said that the raised Homocysteine level can be due to vitamin b being deficient. "

"He will not treat me as vitamin b12 deficient"

"My folate was alittle low too according to him"

So your GP has agreed that the raised Homocysteine could be caused by B12 deficiency but won't treat you.

Think about writing a letter to GP surgery and maybe copied to practice manager, pointing out you have raised homocysteine and worsening neuro symptoms and think about asking for a trial of B12 injections.

See Point 1 in letter writing link below.

b12deficiency.info/b12-writ...

More about letters

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.

When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received can be useful if there is a need for a formal complaint in future.

I included a request in letters that a copy of letter was filed with medical notes.

My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.

Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.

Letters could contain symptoms list, relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.

The shorter the better as GP more likely to read it all , in my opinion.

Keep copies of any letters sent or received.

Mention any below range or borderline results for serum B12 you've had in the past and perhaps you could include this quote from the summary of the BSH Cobalamin and Folate guidelines, a UK document.

"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"

BSH Cobalamin and Folate Guidelines (link to whole document)

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

If you have symptoms that affect your spinal area, I suggest highlighting these as it may mkae the GP take more notice.

Untreated or under treated or delayed treatment may increase the risk of damage to spinal cord in people with B12 deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

If the homocysteine test was done privately, you could request that your GP orders a homocysteine test or that you are referred to someone who can order one. NHS GPs often won't accept private results.

If you start to take b12 supplements that is likely to affect results of the homocysteine test, it will probably lower the homocysteine level.

Have you asked the GP what you should do about the folate as he thinks it's a bit low?

He'll probably suggest that you take a folate supplement with the RDA (recommended daily amount) of folate in it.

You could ask your local pharmacist for advice about whether to take a folate supplement. Make sure you tell them that you think you might have PA/B12 deficiency.

In a person with both folate and B12 deficiency, it is vital that both deficiencies are treated at the same time. Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems. B12 treatment would usually be started first in someone with both deficiencies.

People can show symptoms of both folate deficiency and B12 deficiency even if serum results are within normal range.

Challenging GP however politely is likely to put some strain on GP/patient relationship.

Have a back up plan eg another GP surgery to go to.

nhs.uk/common-health-questi...

Do you have a supportive friend, partner or family member who can help you?

Might be worth pushing to be referred to

1) a neurologist

2) a haematologist

3) a gastro enterologist if gut symptoms present

PA is sometimes diagnosed by gastro enterologists.

Link below discusses when a patient with B12 deficiency (and /or folate deficiency) should be referred to a haematologist and a gastro enterologist.

cks.nice.org.uk/topics/anae...

Seeing a specialist is no guarantee of better treatment as there are some specialists whose knowledge about b12 deficiency is lacking.

I suggest you seek support from PAS. If you join as a member you could ring their members helpline.

As a last resort , some on the forum resort to self injection.

I did when I had exhausted myself over several years fighting to get treatment for obvious b12 deficiency symptoms because NHS refused to treat me at that time.

Sleepybunny profile image
Sleepybunny

Links about misconceptions about B12 deficiency that health professionals may have.

Some links may have details that could be upsetting.

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Blog post that mentions misconceptions about B12 deficiency

b12deficiency.info/a-b12-se...

Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

Hedgeree profile image
Hedgeree

Hi Mrss25,

I know from my own experience when my vitamin D levels were very low I was having headaches daily and felt very unwell. I was also having muscle pain and weakness in both arms.

With your vit D level being below range that could possibly be causing your headaches, it certainly won't be helping. I'm not medically trained but just sharing my experience.

Also I know others have suggested writing to your surgery. I've found that really helpful and have actually got a blood test referral from doing so when the surgery had basically told me to go away. Always send a copy to the practice manager too.

It's difficult to have the energy to write a letter when you're not feeling well but if you can do so you may be surprised at the outcome.

Best wishes.

You may also like...

Help with blood test results please.

transfusion. My vitamin D level was also very low. The result I am most worried about is my...

My test results help please

observation 258 10^9/L Serum iron tests Plasma total bilirubin level 8 umol/l [0 - 20] Plasma...

New blood test results - confusing please help!

Hello, I've been having monthly B12 injections for the last couple of years due to my pernicious...

Medichecks Blood test. 7/2/2017 - help with results please.

Vitamin B12 - 126 pmol/L 140.00 - 724.00 ***** Folate (serum) 3.36 ug/L 3.89 -26 - 80...

Help with blood results please

a year ago and was told I had low vitamin D and was given vitamin D tablets. Symptoms have been...