Awaiting results

Hi new on here today!

I have been ill for over a year with the majority of PA symptoms. I am awaiting blood results on Monday 20 th and hoping this time they have come up with something as getting desperate.

[clivealive Forum Support]

Hi Hidden and welcome.

Do you know what tests you had carried out?

I'm not a medically trained person but there are others on here who will be able to give you good advice so please do post the results and intended treatment by your doctor when you know them.

[Hidden in reply to clivealive]

Thank you for your support, I will post next week.

[Hidden]

Thank you. It helps knowing others are going through similar problems.In the meantime I'm using Methyl B12 under tongue.

As advised by nutritionist.

[Sleepybunny in reply to Hidden]

Were you supplementing with B12 before you had the blood tests?

This may affect results.

b12deficiency.info/b12-test...

b12deficiency.info/what-to-...

pernicious-anaemia-society....

I am not a medic.

[Hidden in reply to Sleepybunny]

Hi I haven't supplemented with B12 only magnesium and a mineral complex advised by nutritionist.

Last year had some of the symptoms and took multivitamin for few months and seemed to get better and put on weight ( I only weigh 7st 12lbs after being 9st 4lbs). Unfortunately because of food intolerance had to stop the multivitamin and then became ill and gradually getting worse.

Only began to realise recently the connection. In March last year had B12 test and was higher than in October. I think my result was 5.8 but memory is rubbish.I'm now awaiting results on 20 th. Hopefully they will show something. My nutritionist who used to be a GP said for my age (60) the NHS levels are low and for me should be 520.

I'm supplementing the last three days with methyl B12 under tongue. Will get back to you when have results.

[Hidden in reply to Hidden]

Sorry meant blood test was taken before supplementing.

[Sleepybunny]

Hi,

if you suspect you may have b12 deficiency, I'd recommend being well read about subject as b12 deficiency is not always well understood by some GPs/consultants.

I've assumed you're in UK.

B12 info

1) Pinned posts in this forum. I found it helpful to read Fbirder's summary of B12 documents. Link in third pinned post.

2) PAS (Pernicious Anaemia Society) website. PAS are helpful and sympathetic. In some cases PAS can intervene on behalf of members.

pernicious-anaemia-society....

PAS tel no [phone]

There is an answerphone so messages can be left. May take a couple of dyas to get a reply.

Martyn Hooper's blog. Martyn Hooper is the chair of PAS.

martynhooper.com/

3) B12 Deficiency Info website

b12deficiency.info/

4) b12d.org

b12d.org

5) BMJ B12 article

bmj.com/content/349/bmj.g5226

Article indicates that a delay in treatment can lead to neurological damage.

6) BNF (British National Formulary)

All UK GPs will have acccess to this.

evidence.nhs.uk/formulary/b...

7) BSH Cobalamin and Folate Guidelines

If you are in UK, I'd recommend reading whole document. Gives guidance to UK doctors on diagnosis and treatment of B12 deficiency.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines.

I gave a copy of BSH Cobalamin guidelines to my GPs . Some UK GPs may not be aware of this document.

Link to flowchart in BSH Cobalamin guidelines

stichtingb12tekort.nl/weten...

Flowchart makes it clear that patients who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial B12 treatment. My understanding (I'm not a medic) is that this applies for those with low B12 result and also those who have an in range B12 result. IFA test can help to diagnose PA but test is not always reliable and it is possible to have PA even with a negative IFA result.

8) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Book is up to date with UK B12 guidelines. I gave a copy of book to my GPs.

9) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart.

Very comprehensive book about B12 deficiency. lots of case studies. Reading this book was a lightbulb moment for me.

B12 Deficiency Symptoms

Have you looked at following lists of b12 deficiency symptoms?

pernicious-anaemia-society.... click on checklist. I gave a copy of PAS list to my GPs with all my symptoms ticked.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Causes of B12 deficiency

b12deficiency.info/what-are...

What to do next?

b12deficiency.info/what-to-...

Unhappy with treatment?

b12deficiency.info/b12-writ...

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

Other conditions

Some other conditions have symptoms that can overlap with those of B12 deficiency.

Have you ever had tests for thyroid problems?

there is a very active Thyroid UK forum on HU.

Link to Thyroid UK website

thyroiduk.org.uk/tuk/index....

Tests for Coeliac disease?

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

I am not a medic just a person who has struggled to get a diagnosis.

"In March last year had B12 test and was higher than in October. I think my result was 5.8 but memory is rubbish."

5.8 would be extremely low for B12. could this be a result for folate?

Blood test results

The most important thing I have learnt over years of trying to find out what is wrong with me, is to always get copies of blood test results. I learnt to do this after being told face to face or over the phone that everything was normal/okay then finding abnormal or borderline results on the copies. Paper copies will usually state reference range for each test. It can be useful in my opinion to keep a record of changes in blood test results and having copies makes it easier to remember particular results.

Some surgeries have online access to a summary of medical info.

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

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

[Hidden in reply to Sleepybunny]

Thank you for all that. I too have struggled to find out what is wrong. But having read a lot now and having more tests. I am going to sit down with husband and write document for GP.

Over three years ago was given omeprazole and took for two years but also was on lots of antibiotics for urinary infections , especially over 2015/ January 2016 when I got really ill.

All tests were normal and I'm sure they thought it was anxiety. In March took a multi bit supplement and within two months was fine again. Had to stop taking it end July and had another lot of antibiotics. By August I was anxious, severe head pain stinging nerve pain in head. Have had lots of tests.

Now getting much more symptoms and awaiting blood results. A lot are neurological and scary. I now know antibiotics stop B6 Folate production and omeprazole stops production of B12. We need both to get the B12. Correct me if I'm wrong.

[Sleepybunny in reply to Hidden]

"All tests were normal"

Did you actually see the results and get copies?

What sort of symptoms are you getting?

[Hidden in reply to Sleepybunny]

Pin and needles hands head feet,visual disturbance, palpitations, IBS, shakes, tiredness, burning sore tongue feeling ill, burning in arms, .......

I'm at the end of my tether.

Have to wait another week for more results now.

[Sleepybunny]

Perhaps it would be helpful if you talked to PAS (tel no in above post). PAS should be able to point you to useful info.

[Hidden in reply to Sleepybunny]

Thanks

[Hidden]

Hi back again!

I have now had B12 blood results back from GP. All of my symptoms are above.

My B12 has reduced from 580 last October to 320 this March.

Last March it was much higher so has been reducing. My GP said it was in the normal range and couldn't comment on why it went down.

He agreed to give me an injection

Yesterday and another five. Next being a week away. He is more concerned with my short term memory problem and said this could affect my neurological symptoms and anxiety. I'm going a long with it for now as he has been very thorough.In the meantime am taking Methyl B12 too and sent for a B12/ folate with intrinsic suggested by my nutritionist.

I have read the NHS website that blood tests are not always accurate as not all B12 is for use to your body.

Just hoping by getting my levels back up it will reduce neurological symptoms. I am 60 and nutritionist says better to get my levels to 520 at least for my age.

Any comments or ideas anyone would be grateful please.