Symptoms but “normal results” - Pernicious Anaemi...

Pernicious Anaemia Society

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Symptoms but “normal results”

Pinky3 profile image
17 Replies

Hello,

Can anyone advise if these results are “normal”, I have been advised they’re within range but I have many symptoms: breathless upon walking and weak legs when walking up stairs, I get restless painful legs also, water retention, bloating, lacking in energy and tired, then during the night I wake frequently.

Serum B12 289 ng/L (211-911)

Serum ferritin 31 ug/L (was 22 in June) 10-291

Serum folate 7.1 ug/L (3-14.40)

Platelets 380 (140-400)

Haemoglobin estimation 138g/L (115-150)

Total white cell count 6.7L (3.50-11)

RBC 4.36 (3.80-5.00/L)

MCV 92.7fL (80-99)

MCH 31.7pg (27.50-32.50)

MCHC 342g/L (310-350)

Do I need to call the doctors back and query this?? It’s been many years of feeling this way and I have stabilised my thyroid which consultants like to focus on. I was told I have chronic fatigue symptoms and nothing can be done?

Any advice would be lovely,

Thank you

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17 Replies
Nackapan profile image
Nackapan

I would discuss youd ferritin levels with your g.p. Restless legs breathless can be symptoms of a ferritin level below 50

Also a good level of ferritin needed for thyroid function

Do you take s multivit with folic acid in and b12?

Also vit d needed at this time of year.

I notice not tested on your bloods

Anyway worth discussing ferritin with G.p as they will have other iron results

Pinky3 profile image
Pinky3 in reply toNackapan

Thank you for your reply, when I mentioned my ferritin the gp said it was normal for women to have low ferritin?

I didn’t want to take my supplements before my test so I temporarily stopped them. But I take B12 spray and a complex. I also take a gentle form of iron.

My Vit D was 100.3 in sept 2020.

Gambit62 profile image
Gambit62Administrator

Yes the results are all in the normal range but for some of them that doesn't mean that they are at the right point in the range for you eg B12 tends to be pretty stable at a point in the range because of the use of stores but if there is an absorption problem it will start to fall once those stores are used up but this can take a very long time.Have you had a previous B12 measure, for instance, that showed a significantly higher level? A downwards tend over time would indicate and absorption problem - but serum B12 is only accurate to about 20% so a difference within that amount isn't conclusive of anything.

Pinky3 profile image
Pinky3 in reply toGambit62

Thank you for your reply, I have managed to find one previous B12 test from jan 2017 and it was 424.

Gambit62 profile image
Gambit62Administrator in reply toPinky3

If you weren't supplementing more than RDA at the time then that's a significant drop and suggestive that B12 may be part of your issue. Are you experiencing any numbness or tingling in hands and feet - if so you could try pushing back on that grounds that you have neurological symptoms and ask for a trial of shots but it can be very difficult getting GPs to listen.Link to the BCSH standards here - if you go back a few days there are also links to local standards in various threads

onlinelibrary.wiley.com/doi...

Bonjourtristesse profile image
Bonjourtristesse

I was told the same as you. Re: CFS. My levels were almost identical to yours. They continued to drop over the next couple of years. I have had good results with b12 injections.

Pinky3 profile image
Pinky3 in reply toBonjourtristesse

I will ask about the injections, but as she thinks I’m in range will they allow injections?

Bonjourtristesse profile image
Bonjourtristesse in reply toPinky3

You could try requesting that they treat symptoms and say that you believe you have an absorption problem. I think it depends on the doctor. Mine was not interested at all.

After paying for private showing my levels had dropped to low 200s (and I was supplementing with oral b12 by then not realising I should have waited and had probably skewed the results) I was still told I was in range. I then paid for private b12 injections through a clinic and went back to doctors to report improvements and was still told it was placebo. I ended up having to self inject after the clinic was shut in March.

Pinky3 profile image
Pinky3 in reply toBonjourtristesse

I will request this and see what they say, otherwise I will try the self inject as it would be great to finally feel better! How annoying for you that the clinic shut, do you find it easy to inject yourself? If I need that route are you able to PM me the details of where you source it from? Im hoping that my persistent hounding will be heard and they’ll help me 🤷‍♀️

Bonjourtristesse profile image
Bonjourtristesse in reply toPinky3

You would need to have your first injection in a clinical setting in case of allergic reaction if you have not Already have one. It is very unlikely but best not to risk anything.

I don’t much like it but you get used to it and the health benefits of feeling half normal fat outweigh my fears. I got mine from apohealth.de some german pharmacists have stopped sending but I ordered from there the other day and it was fine.

fbirder profile image
fbirder

I presume they#ve tested HbA1c?

Pinky3 profile image
Pinky3 in reply tofbirder

No, the last HbA1c was tested in September 2020 and was 33 (18-41) what does this test mean?

fbirder profile image
fbirder in reply toPinky3

It's a test for diabetes. Which you do not have.

Sleepybunny profile image
Sleepybunny

Hi,

From personal experience, I can tell you it's possible to have severe b12 deficiency with a result that is well within range. I had over 40 symptoms including neurological problems with most of my results from 300 - 500 ng/L.

I've assumed you are in UK.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Has your GP got a list of all your symptoms especially any neuro symptoms?

Have you asked to be referred to a neurologist?

Unhappy with Treatment (UK info)?

I suggest putting any queries about treatment into a brief, to the point and polite as possible letter to GP and maybe copied to practice manager.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neurological symptoms present.

Point 5 in above link is about being symptomatic for B12 deficiency with an in range b12 result.

Link has letter templates that people can base their own letters on.

CAB NHS Complaints

citizensadvice.org.uk/healt...

Suggest you read the documents below before your next contact with GP.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

There are some useful diagnostic flowcharts in above document.

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

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

NICE CKS

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

Each CCG/Health Board and NHS Hospital Trust in UK is likely to have their own local guidelines on treatment/diagnosis of B12 deficiency.

Some of these local guidelines may need updating and some do not reflect what is in the BSH Cobalamin and Folate Guidelines.

I suggest you track down the local guidelines for your area of UK and compare them with BSH, BNF and NICE CKS links.

If you suspect you have PA, have you thought about joining PAS who can offer info and support?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Vital to get adequate treatment for B12 deficiency as being untreated or under treated can lead to permanent neurological damage including problems with spinal cord.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

"I was told I have chronic fatigue"

Quite a few on here have been diagnosed with ME/CFS/Fibro prior to being diagnosed with B12 deficiency.

Misdiagnosis of B12 deficiency as ME/CFS and other conditions

martynhooper.com/2018/02/10...

b12deficiency.info/misdiagn...

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.

Useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF link in this reply for up to date info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Lots of B12 info in my replies on the the thread below eg symptoms, causes of B12 deficiency, more B12 books, B12 websites, more B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I have written other very detailed replies on the forum that you might find helpful.

I am not medically trained.

Pinky3 profile image
Pinky3 in reply toSleepybunny

Wow that’s a really helpful amount of information there, thank you for taking the time to put all together and send to me. I have a phone call tomorrow to discuss my results and I am going to ask for a trial of injections and see what they say. It’s funny as I have also been told I have fibro which I contested at the time so it’s interesting a lot of people are diagnosed with these conditions first. Many many years ago I was given b12 injections and then it stopped, I didn’t have the understanding at the time that these injections were for life but when I query this now, I receive a quizzical expression. I hope for a good response tomorrow now that I’m armed with this knowledge. Thank you 🙏

Bonjourtristesse profile image
Bonjourtristesse in reply toPinky3

I was also told I might have Fibro along with the CFS. Pain has gone with enough b12.

Sleepybunny profile image
Sleepybunny

Hi again,

"Many many years ago I was given b12 injections and then it stopped"

Do you have copies of any tests/medical records from this period?

Does your current GP know you received B12 injections in the past?

If you have been diagnosed with PA (Pernicious Anaemia) in past, treatment is for life.

PAS have a leaflet "Treatment is for Life" which PAS members can print out.

pernicious-anaemia-society....

Is there a family history of B12 deficiency, PA , Coeliac disease, Crohn's disease and other conditions that might lead to B12 deficiency?

Is there a family history of auto immune conditions?

PA is an auto immune condition. Coeliac disease is another auto-immune condition that can lead to B12 deficiency.

If yes to family history, does your GP know about it?

Are there any of the following risk factors in your life?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

In UK, PA is often diagnosed by a positive result in the Intrinsic Factor Antibody test (IFAb).

However it is possible to have PA even if IFAb result is negative. See BSH Cobalamin and Folate Guidelines for info about Antibody Negative PA.

PAS support groups in UK

pernicious-anaemia-society....

No meetings during pandemic.

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

People can join PAS even if they do not have a confirmed diagnosis of PA.

It takes some people years to get a diagnosis.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Have you ever been tested for Coeliac disease?

NICE guidelines Coeliac Disease

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

Coeliac Blood Tests

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

If you were tested for coeliac disease, did the GP .....

1) order both the tests listed below?

TTG IgA test which checks for a particular antibody to gluten.

Total IgA test which checks which patients have IgA deficiency.

Patients with IgA deficiency need alternative tests for coeliac disease.

2) ask you to eat plenty of gluten in more than one meal per day for several weeks before blood taken for coeliac tests?

People with coeliac disease can get a negative result in TTG IgA test if they are IgA deficient and also if they weren't eating enough gluten prior to blood tests.

H Pylori infection?

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

Any exposure to Nitrous Oxide?

Nitrous oxide is in gas and air mix used as pain relief in labour and is also sometimes used as part of anaesthesia for operations.

gov.uk/drug-safety-update/n...

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Any chance of internal parasites such as fish tapeworm?

"I have a phone call tomorrow to discuss my results"

I hope your phone call went well.

Might be worth following up your phone call with a letter to GP.

See these next links about letters which I think are probably applicable to your situation.

b12deficiency.info/b12-writ...

b12deficiency.info/b12-writ...

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.

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 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.

Keep copies of any letters sent or received.

Most medical records are deleted after 8 years so don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.

Best piece of advice I ever got was ......

to always get copies of all my blood test results.

I am aware of forum members who have been told everything is normal/no action on blood tests when there are actually abnormal and borderline results.

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

Process in other parts of UK may vary from process in England.

Some people get copies of/access to their complete medical records. My understanding is that patients can request copies of/access to paper records as well as online records.

Warnings

1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.

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

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