Latest Bloods "Normal". Suggestions? - Pernicious Anaemi...

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Latest Bloods "Normal". Suggestions?

drlabman profile image
22 Replies

Apologies, but I had no response when I appended this comment to my existing thread, so I thought I'd start a new one.

Well, as usual, despite fatigue, unsteadiness, etc. my blood results are all "normal". B12 is in the 600s (although I have been supplementing with sublingual 1000ug), folate is above minimum, and all antibody tests are negative. The only possible culprit from this round of tests is ferritin which is 17 (15-300). Although it's within range, it looks suspiciously close to the lower limit. Not sure what to do next. See GP (they're particularly stubborn if things are "in range")? Or just supplement? Ideally, I'd like to know what could be causing such a result because my diet is varied - unless it's something to do with taking omeprazole for the last 20years. Any suggestions?

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JMN2017 profile image
JMN2017

Have you posted your results? What was your B12 before you started S/L B12? What is the history etc?

drlabman profile image
drlabman in reply toJMN2017

Tests this time were

B12 645 ng/L (180 - 900) (340 prior to supplement)

folate 5.3 ug/L (> 3.0)

ferritin 17 ug/L (15-300)

antibodies - all negative

clivealive profile image
clivealiveForum Support

Hi drlabman "omeprazole" - say no more!

Presumably you are taking omeprazole to reduce your acid levels, Absorption of B12 via your digestive system relies on high acid levels.

Testing your serum B12 whilst you are supplementing is pretty much next to useless as they will "skew" the result.

Did your doctor not give you anything for your low ferritin?

I'm not a medically trained person.

drlabman profile image
drlabman in reply toclivealive

Re: low-ish ferritin. I haven't seen my GP since my blood results arrived. That's the next challenge - although I'm prepared for a "it's in the normal range" response, despite my unsteadiness, lightheadedness, fatigue, generally not feeling well, etc.

I've had zero joy in getting my GP to consider omeprazole as being the cause of my symptoms, despite using it for over 20 years, largely because my blood results tend to be in the "normal" range.

I understand your comment about skewing the B12 result, but I am curious nevertheless. If I've supplemented and managed to raise my serum B12 (doubled it in fact) shouldn't that, in itself, result an improvement in symptoms? If that's the root of the problem, of course. Do you know what level B12 injections would hope to raise it to? Or have I missed the point?

drlabman profile image
drlabman in reply toclivealive

Sorry, missed a bit. You're correct - omeprazole is to treat acid reflux. I have a hiatus hernia. I have to say though, omeprazole has been a life saver/improver - I was totally miserable when I had permanent heartburn. However, I now understand the complications of long term use - although I always had it in the back of my mind that reducing the acidity in the stomach to (almost) zero was maybe a bad idea.

clivealive profile image
clivealiveForum Support

The problem is knowing how much of the B12 is getting in at the cell level and not just swirling around in the blood stream.

You could always ask for an MMA test. Methylmalonic acid is a chemical used up in one of the cellular reactions mediated by B12. If there's not enough B12 in the cell then MMA levels will rise. If they're not high then it means your cellular levels of B12 are OK. High levels of plasma MMA (>0.75umol/L0 almost invariably indicate cobamalin deficiency.

You could also ask to have your Folate level checked again as "above minimum" doesn't sound too good. There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. Folic acid also works closely with vitamin B12 in making red blood cells and helps iron function properly in the body

As I say, I'm not a medically trained person but I've had P.A. for more than 45 years.

drlabman profile image
drlabman in reply toclivealive

Thanks for the explanation, and I'll look into the extra blood tests.

As far as folate level, I gave the reading in one of my replies

folate 5.3 ug/L (> 3.0) - that's all it says. No range.

clivealive profile image
clivealiveForum Support in reply todrlabman

I think it means anything over 3.0 so you are really bumping along the bottom.

Goodnight

Samsuzza profile image
Samsuzza in reply toclivealive

Hi I have asked Mums haematologist to conduct the tests above. My question to you is when is the best time for her to do it. She has been on Iron Max supplements which have folic and co B12 and started Blackmores B12. I have stopped them and it has been 2 days. Also every Friday she has an Eprex 10,000 units needle. Thank you I am in Perth Australia

clivealive profile image
clivealiveForum Support in reply toSamsuzza

Taking supplements that contain B12 will affect any tests ordered by your doctor to assess your B12 status. You should not take any supplement with B12 before having your B12 assessed (including MMA/homocysteine/Active B12). For testing intrinsic factor antibodies: keep one week between an injection and the test.

For Folate a morning test not having had breakfast is the best time.

I have no idea what effect Eprex will have on B12 testing but think you should advise your Mum's haematologist what supplements she had been taking.

Samsuzza profile image
Samsuzza in reply toclivealive

Thank you for your advice I have recently just received further results for my mother - Just now trying to work out how to place them on this forum. Is there an email I can email to not sure how to add screen shots

clivealive profile image
clivealiveForum Support in reply toSamsuzza

I'm not technically minded but I think you need to "write a (new) post" to attach a photo.

If your "screen shot" is in the form of a jpeg file this will be simple to attach.

If it's not and you are on a laptop or P.C. (I know nothing about 'phones, blackberries apples or grapefruits :) ) and have a program called "PAINT" when you have the "screen shot" showing press the "Prnt Scrn" button (3rd from right on top row).

This temporarily saves your screen picture in memory

Open the PAINT program and select "PASTE" and your screen print will appear. Select "CROP" and draw a box around the section of the screen you want to post here and press copy.

Close the PAINT program (top right hand X) and select "SAVE" and your "My Photographs" folder may well pop up.

At the bottom of the screen where it says "Untitled" rename the photo to whatever you want to call it then on the "Save as type" line underneath click on the down arrow on the far right and select "JPEG"

When you start a new post I think you get an option to "add a photograph" click on it and select your "new" JPEG file.

Samsuzza profile image
Samsuzza in reply toclivealive

Thanks a million on a mac air one last question what do I call the Post -Is Need Help and add previous post above

clivealive profile image
clivealiveForum Support in reply toSamsuzza

Now I'm really flummoxed as the only "Mac" I know about was what I wore to school when it was raining in the 1940s :)

Call the new post whatever is most meaningful to you regarding the "further test results"

Samsuzza profile image
Samsuzza in reply toclivealive

BIG PROBLEM ONLY LETS ME ADD ONE PHOTO NOT GOOD - NOT YELLING JUST SULKING

clivealive profile image
clivealiveForum Support in reply toSamsuzza

Oooops!

Samsuzza profile image
Samsuzza in reply toclivealive

Post called

Further Results - Help Need

Gambit62 profile image
Gambit62Administrator

ferritin is just one marker for iron - albeit quite a good one - but you would really need a full blood count to get a better picture of what is happening.

there is quite a bit of evidence that people who are hypothyroid need slightly higher ferritin levels than others but I'm not aware of any other conditions that need higher ferritin levels.

20 years of using omeprazole is rather excessive - it certainly isn't recommended that it be used or that length of time. In 20 years it is also possible that your ability to produce stomach acidity has lessened some what - and low stomach acidity has pretty much the same symptoms as high stomach acidity so if you experience acid reflux if you stop taking the omeprazole that doesn't necessarily mean that you still have high stomach acidity.

Note: don't come off the omeprazole without consulting your GP though as it is a medication that needs to be stopped gradually.

wedgewood profile image
wedgewood

Low stomach acid can be the cause of "heartburn" I. e. Acid reflux . The spinchter only closes properly when the stomach acid is high . The low stomach acid which then leaks up is still strong enough to cause terrible pain . PPIs neutralise it totally ,but then you are unable to absorb many nutrients which need the acid for that function . The answer could be taking betaine hydrochloric acid capsules with pepsin . You really need a good nutritionist to advise on this . I would really try to stop the omeprazole . GPs know how to neutralise stomach acid with PPIs ,but do not have a solution for low or no stomach acid . All fermented foods ( natural probiotics ) are a treat for your stomach ( if not for you personally !) Best wishes to you

Sleepybunny profile image
Sleepybunny

Hi,

"ferritin which is 17 (15-300). Although it's within range, it looks suspiciously close to the lower limit"

Has GP considered ordering a set of iron studies?

labtestsonline.org.uk/under...

"Well, as usual, despite fatigue, unsteadiness, etc. my blood results are all "normal". B12 is in the 600s (although I have been supplementing with sublingual 1000ug),"

"B12 645 ng/L (180 - 900) (340 prior to supplement)"

I was highly symptomatic for B12 deficiency with multiple neurological symptoms with results 300-400ng.

Lists of B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

You mention unsteadiness, this would usually be considered as neurological.

Have you seen a neurologist?

Are you in UK?

In UK, BSH Cobalamin and Folate Guidelines recommend that people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody (IFA) test and start initial B12 treatment. This applies whether B12 is low or within range.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Unhappy with treatment?

Link about writing letters to GP about B12 deficiency.

b12deficiency.info/b12-writ...

Point 5 is about being symptomatic with an in-range B12 result. Point 1 is about undertreatment of B12 deficiency with neuro symptoms.

CAB

citizensadvice.org.uk/health/

HDA patient care trust

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

hdapatientcaretrust.com/

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

UK B12 treatment

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

cks.nice.org.uk/anaemia-b12...

UK b12 treatment info also in BSH Cobalamin and Folate Guidelines, a quarter through guidelines.

B12 books

"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.

I am not medically trained.

drlabman profile image
drlabman

Well, as suspected, my GP says the results are "normal" so no need for any treatment. Full blood count in a couple of weeks though.

Peepsdog profile image
Peepsdog

I just wanted to let you know that having a low ferritin can really cause a lot of symptoms. I get iRon infusions anytime mine drops below 50. They should check your ferritin, your total iron binding (tibc), transferrin, and iron level along with a cbc. I hope you can get some answers that will help you feel better soon

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