Pernicious Anaemia Society
15,530 members10,925 posts

Test results, please advice, GP appoiment tomorrow!

Hi all,

I have a print from all my blood test and are like this:

8 Sep 2017

B12 serum 196 (191-663)

Ferritin 73 (10-150)

No folate the GP tought no need for this!!

8 Nov 2017

RCB 4.96 (4.10-5.1010*12/L)

Haemoglobin estimation 151 (120.00-150.00)

MCV 92.1 (80.00-100.00)

MCHC 330 (315.00-345.00)

And all the symptoms that I've posted in my first post.

Numb feet legs and hands. Fast heart rate with palpitations, insomnia, pins and needels in all my body sometimes in my head too. Vision changes, muscle weekness, tremors, feeling cold, need to pee lots of time per day, I can not walk straight, dizziness, anxiety, depression crying a lot. Feeling like I will faint, short of breath, chest pain, brain fog, irregular periods, nervous, mood change, bloating, stomach aches, flatulance.

What can I tell to the new GP tomorrow?

Thanks xxx

14 Replies
oldestnewest

Hi Ioana_17

It is important that your Folate level is monitored as this is essential to process the B12.

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.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom" of the range.

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

2 likes
Reply

Thanks for the realy but how come haemoglobin is high?

Haemoglobin estimation 151 (120.00-150.00)

Could be because I am smoking?

Reply

According to the Mayo Clinic:

"High hemoglobin count occurs most commonly when your body requires an increased oxygen-carrying capacity, usually because:

You smoke

You live at higher altitudes and your red blood cell production naturally increases to compensate for the lower oxygen supply there".

As I say I'm not medically trained.

1 like
Reply

Thank you a lot I will ask the GP for other blood test and to start treating me straight away. Thank you again you've been so helpful xxx

1 like
Reply

I didnt know this. Very interesting

1 like
Reply

Hi,

If you're in UK, I'd suggest reading these B12 articles/documents

BMJ B12 article

Makes it clear that in UK, people who have the symptoms of b12 deficiency should be treated even if B12 levels are within normal 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 (Pernicious Anaemia) and Antibody Negative PA can be diagnosed in UK. Makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start B12 treatment. IFA test can help to diagnose PA but test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range.

BNF British National Formulary Chapter 9 Section 1.2

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

B12 Deficiency Symptoms

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

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

B12 books I found useful

"Could It Be B12? - An Epidemic of Misdiagnoses" by Sally M. Pacholok R.N. and Jeffrey J. Stuart D.O (USA authors)

"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).

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

UK B12 blogs

May be stories on these that are relevant to you.

B12 Deficiency Info blog

b12deficiency.info/blog/

Martyn Hooper's blog about PA

martynhooper.com/

PAS (Pernicious Anaemia Society)

If you think that PA is a possibility, it may be worth joining PAS. They can offer support and info about PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717

I am not medically trained.

3 likes
Reply

Thank you Sleepybunny, much appreciated. I am in UK and I will have the appoiment with the new GP today at 5pm. I am feeling scared that they will say not because I am in range..😢

Reply

I had the appoiment for 2nd opinion with another GP today, but I left from the appoiment really disappointed almost crying...she was so dismissive, she didn't want to listen all I want to say, she just gave me another blood tests for immunology and again for B12 and folate, ferritin and D3 and IFA antibody, Celiac disease and H-pilory because for 4 months I have oral thrush that did' t go away with all the treatments that I have had.

She said that I am borderline on b12 but she won't gave me injections until I will do the blood test and really shows that I have b12 deficiency or PA.

She is waiting for my appointment with the hematologist from 8th of February to see what he will advice as I think he will do me a bone marrow test as my white blood cells come back with every blood test high.

...and she booked me for the blood test on 17th January another 2 weeks of suffering...😢

Reply

Hi,

So sorry to hear your appt was difficult....I had so many like this..surprised I didn't cause a flood in the surgery ......

Your GP may not have seen the B12 documents I gave links to in post above. I gave my GPs copies of these and a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" plus a copy of PAS Symptoms Checklist with all my symptoms ticked.

There is a very useful summary of mainly UK b12 documents in third pinned post on this forum.

I found it easier to avoid confrontation by writing polite, brief as possible letters to GPs listing symptoms, relevant blood results, extracts from relevant B12 articles/documents, questions I wanted to ask etc.

I suggest you look at this link about writing letters to GPs about B12 deficiency as it has lots of useful info and examples of possible letters at bottom of page.

b12deficiency.info/b12-writ...

Writing letters avoids face to face confrontations (which may lead to tears).

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

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

HDA patient care trust

hdapatientcaretrust.com/

UK charity that offers free second opinions on medicla diagnoses and medicla treatment. Think they use a network of specialists around UK.

"She said that I am borderline on b12 but she won't gave me injections"

In the UK, recent emphasis is on treating people who are symptomatic for B12 deficiency, even if their B12 level is within range, in order to prevent permanent neurological damage.

You should be able to find relevant info in

1) BMJ b12 article

2) BSH Cobalamin and Folate Guidelines

3) UK NEQAS B12 Alert

Link to UK NEQAS B12 Alert in link here

b12deficiency.info/b12-writ...

Haematologist

At least you have an appt with haematologist. Fingers crossed that you get one who has a good understanding of B12 deficiency but I'd suggest being prepared for one who doesn't.

Neuro Consequences of B12 deficiency

You mention lots of symptoms that would usually be considered neurological eg

"Numb feet legs and hands....pins and needels in all my body sometimes in my head too....muscle weekness, tremors, ....I can not walk straight, dizziness, anxiety, ....brain fog,"

Is your GP aware of all your neuro symptoms? See B12 deficiency Symptoms lists in my post above.

Have you asked to be referred to a neurologist?

A patient has a right to ask for a referral although GP does not have to agree if they think a referral isn't clinically necessary.

I sometimes used to put requests for referrals in a letter along with reasons why I felt a referral was a good idea.

Again, B12 deficiency is not as well understood by some neurologists as it could be so be prepared if you see one.

Proprioception Problems

B12 deficiency can sometimes lead to problems with proprioception (awareness of body in space). I don't think any of the neurologists I saw ever tested me for proprioception problems.

Two tests that may show problems with proprioception are

1) Walking heel to toe with eyes closed

2) Romberg test

Important that these tests are only carried out by doctors due to risks of injury from loss of balance.

Is your GP aware of the neuro consequences of B12 deficiency? Some forum members have included info on this in letters or discussion.

PAS article on Neuro Consequences of PA

pernicious-anaemia-society....

Post from Martyn Hooper's blog mentions SACD, sub acute combined degeneration of the spinal cord

martynhooper.com/2010/09/21...

PAS article on SACD available to PAS members.

pernicious-anaemia-society.... See Page 2.

PAS (Pernicious Anaemia Society)

PAS members can join PAS local support groups. Perhaps there is one near you? PAS membership costs £20 for a year.

pernicious-anaemia-society....

"she just gave me another blood tests for immunology and again for B12 and folate, ferritin and D3 and IFA antibody, Celiac disease and H-pilory"

Hope your GP knows that even if IFA test result is negative or normal range, it is still possible to have PA. See flowchart below.

stichtingb12tekort.nl/weten...

Which tests did you have for Coeliac disease?

NICE guidelines for Coeliac disease suggest two tests

1) tTG IgA

2) Total IgA

My experience is that the Total IgA test is not always done but it's an important test because someone who is IgA deficient will need alternative tests for Coeliac disease.

NICE guidelines Coeliac Disease

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

Coeliac UK blood tests

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

I am not medically trained.

1 like
Reply

Thank you for all your info.

I don't think the GP knows anything about B12 or anything else. But I will fight for my rights. And I will use all the info you and other nice people gave me.

I am booked for blood test in 2 weeks time on 17th and I will see from there. I will fight for me and for my family as I want to be normal again.

I don't know what test she gave me for Coeliac Disease.

But I will do all research and print all the documents that you gave me and try to make them understand.

If not I will shelf injected.

Thank you again.

Reply

If you get copies of your blood test results, you should be able to see what tests were done for Coeliac disease.

Access to medical records/test results (England)

nhs.uk/NHSEngland/thenhs/re...

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

nhs.uk/chq/Pages/2635.aspx?...

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

labtestsonline.org.uk/under...

MCV and MCH values can be raised in people with B12 deficiency and lowered in people with iron deficiency.

Blood film

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

I'm surprised you haven't had a folate test. It is possible to get blood tests done privately in UK. It is not unknown for someone with b12 deficiency to also have folate deficiency.

Reply

I have had on 8th Nov the test results

MCV 92.1 (80.00-100.00)

MCH 330 (315-345)

Before that on 8th Sep 2017

B12 196 (191-663)

I have had folate with b12 but the Gp said that could not be tested the results came back as :

" Serum folate - Haemolysed. Folate assay has been restandardised against WHO IS 03/178. Please note new reference values."

I told the GP that I have had stomach ulcers back in my teens and that now I have stomach aches all the time feeling bloated with flatulence and she prescribed me Lansoprazole 30mg for stomach reflux.

I have read that this one can cause b12 deficiency.

I don't want to take it.

I will wait to see the other blood test result which I am sure that will come back abnormal.

I told her that I refuse to take antidepressants or to change to another one.

She said that the antidepressants that I have are sedatives and will help me sleep that's why she prescribed me to help me with insomnia.

Reply

Hi,

The meaning of the word haemolysed as I understand it is that the red blood cells were ruptured or destroyed.

Is the GP going to try to do another folate test?

The haematologist you are due to see, may be able to explain why the blood sample showed haemolysis.

Haematologist might consider ordering a folate test if you explain you have not had a folate result yet.

Good folate levels could mask signs of macrocytosis in blood cells due to B12 deficiency.

Some people on the forum have been prescribed PPIs for reflux due to high stomach acid and have then found out they actually had low stomach acid. The symptoms of low stomach acid and high stomach acid can be very similar.

Low stomach acid

drmyhill.co.uk/wiki/hypochl...

PPIs

pulsetoday.co.uk/clinical/m...

nhs.uk/conditions/vitamin-b...

1 like
Reply

Hi, thanks for replying.

I will have all the test done on 17th of January, b12, folate, D3 and ferritin, FBC, Instrictiv Factor Antibody and for Coeliac Disease and other test for immunology.

Hope the test will show something as I cannot cope anymore with all the symptoms especially with the fast heart rate and palpitations and terrible insomnia and numbness in my hands and legs every night. It is awful I can not take it anymore.

Reply