Blood Test Concerns

[Themabinogion]

Hi all I need a little help with some concerns about a blood test the doctor has asked me to have. I was diagnosed with pernicious anaemia last August. The doctor prescribed vitamin tablets to be taken for four months but told me that they probably wouldn’t work. When tablets finished at the end of January I went back and was feeling quite ill and I was sleeping most of the day. The doctor said that she would test me for sleep apnea. I told her that I knew a number of people with sleep apnea and I did not have. After more or less begging for treatment I was given six injections over a two week period in February. I began to feel better than I had for years but after about two weeks I began to deteriorate, aching joints, sleeping, swollen tongue, itching, unable to remember etc etc returning. I asked for another injection but the doctor wants me to have another blood test. If it comes back normal they want to test for sleep apnea. My worry is that they will stop my quarterly injections. I have an appointment for next Monday. Should I concent to the blood test. Thanks in advance, Laurence

[clivealive Forum Support]

Hi Themabinogion are you in the UK?

Treatment for Pernicious Anaemia is normally by injections of Vitamin B12 and are for the rest of your life.

Any test result for serum B12 is likely to be skewed by the injections and supplements you have been having and is normally deemed to be unnecessary - unless it come back low.

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

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed so ask for them to be tested.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

.

[Themabinogion in reply to clivealive]

Thanks for the quick reply and Yes, I’m British and live in Cardiff

[clivealive Forum Support in reply to Themabinogion]

Then you doctor should not stop your injections and if you are still having neurological symptoms you may need the more frequently.

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 re-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...

You will see that for P.A. patients with neurological involvement, maintenance injections should be every eight weeks - not twelve.

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.

Please remember too to ask to have your Folate level checked.

[Themabinogion in reply to clivealive]

Hi cliveslive I asked the nurse to test my folate levels too and at first she refused as the doctor had no requested it but then agreed to include it. I called the surgery for the results and was told that B12 came back normal which I think was expected after loading doses in February but they said the folate result was abnormal at 1.8 so now I’m waiting for the doctor to phone. Whatever they, I hope it helps some of my symptoms. I don’t know what folate is or what it does but thanks for prompting me to get it tested.

Laurence

[clivealive Forum Support in reply to Themabinogion]

Folate (or folic acid) - Vitamin B9) is sourced naturally from eating leafy green vegetables - sprouts, broccoli, asparagus, spinach, peas, beans etc. It is also to be found fortified into may breakfast cereals as folic acid. Check the sides of the packets.

Are you able to include any or all of the above in your daily diet?

However, 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

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.

I think your doctor should be treating your Folate deficiency as soon as possible but remember I am not medically trained.

[Sleepybunny]

Hi,

"My worry is that they will stop my quarterly injections."

Might be worth getting proof of your PA diagnosis. Some people on forum have had injections stopped and when they challenged this , doctors have said there is no PA diagnosis in their notes.

Access to NHS medical records Wales

nhsdirect.wales.nhs.uk/life...

citizensadvice.org.uk/wales...

Have you considered joining and talking to PAS (Pernicious Anaemia Society)? They can offer support and info about PA. In some cases they can intervene on behalf of PAS members.

PAS (Pernicious Anaemia Society)

Based in Bridgend, Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

There are useful PAS articles/leaflets available to PAS members including...

"Treatment is for life"

"An Update for Medical Professionals: Diagnosis and Treatment"

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

Martyn Hooper's blog about PA

There are stories on here about how PAS has supported people whose injections have been stopped.

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

I suggest reading following UK B12 articles/documents.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and 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 with lots of case studies.

More B12 info in pinned posts on this forum. I have written some very detailed replies recently. Might be worth searching for them.

I am not medically trained.

[Themabinogion in reply to Sleepybunny]

Thanks for all the information Sleepybunny. I joined the PAS a little while ago so will wait to see what the doctor says before I speak to PAS. Before the doctor told me I had PA, she asked Me if anyone in my family had it. I told her my father”s brother had it for many years. She said ‘you have it too,’ and that it runs in families and that I‘ll have to have injections for the rest of my life. The doctor who phoned me agreed that I had PA too and he must have been reading from my notes so I hope they wouldn’t tamper with my file.

Many thanks