Pernicious Anaemia Society
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Newbie - I would appreciate some help please

I have thyroid issues, not recognised by the NHS, so seeked help privately and was better in 6 weeks, it was a miracle. Have a new Gp who denies I have hypothryoidism and wouldnt prescribe me the Levo anymore and now 5 months of no medication ,have some really scarey symptoms.

Ive always believed that I may have pernacious anemia alongside this, especially of late I can barely walk, really breathless, swollen tongue, pale/yellow skin, dizziness, eye sight deteriorating, pain in my body, confusion, memory loss, painful palms and feet (especially the left), I am feeling so poorly.

I have has every blood test under the sun, was wondering if someone can advise what test I need to rule out PA.

Ive had the usual B12, folate, other heamotology tests all normal, what more can I do to rule this out with every symptom and more.

Thank you


4 Replies

What were your B12 levels? Are you taking any supplements?

If you're not supplementing with B12 and your B12 levels are 'normal' then you may be suffering from functional B12 deficiency.

You could get your doctor to test for Methylmalonic Acid levels (MMA). If your B12 isn't working properly then your MMA levels will be high. It's a pretty specific test for B12 deficiency.

You could also ask for an anti-IF (Intrinsic Factor) antibody test. A positive result is a fairly good indication of PA. However, about half of people with the antibodies will give a false negative result.

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Hi csavery.

Here are some links and info which might persuade your GP to treat without delay as what many consider a normal test result is not normal and it would appear from your neurological symptoms that you have a fairly severe deficiency that should be treated as soon as possible. Thyroid disease also puts you in a high risk group for B12def. being autoimmune and interlinked, with symptoms overlapping.

Extracts from the book, 'Could it be B12?' By Sally Pacholok & Dr J. Stuart :

"deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml."

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Failure to treat adequately and without delay risks permanent neurological damage, as B12 is specific to the myelin surrounding the brain and spinal cord.

Extract from BCSH guidelines:

"The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no improvement.

BMJ latest research document:

"Summary: * Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

**It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."

The above BMJ research document is supported by many research papers and is peer reviewed.

Best wishes for a good outcome.



Have you had a Homocysteine test? Or an Active b12 test?

I have read that the results of these tests may be affected if you are supplementing or have supplemented recently with B12.

Another thing that I found that doctors didn't agree on was whether or not these tests should be fasting tests.

"I've had the usual B12, folate, other heamotology tests all normal"

Did you get paper copies of your test results and look at the results or were you told everything was normal?

I learnt from experience that what I was told over the phone or even to my face was not always what was on the copies. I always get copies of all my blood tests. Most surgeries will charge a small fee per copy.

Have you had a FBC (Full Blood Count) tests, folate and ferritin and B12?

Have you ever had a blood smear (aka blood film)? B12 deficiency can affect the shape of some blood cells eg red blood cells and neutrophils and a blood film may show whether or not there are changes in shape of blood cells.

I keep an eye on my MCV and MCH on the FBC as high MCV and high MCH can indicate the possibility of macrocytosis which can be associated with b12 deficiency. Low iron can make red blood cells smaller, low B12 and/or low folate can make red blood cells bigger. A patient with both low iron and low B12 and/or low folate can have "normal" size red blood cells and a Gp may miss both conditions .

Management section contains similar info to that in BNF (British national formulary)

Important info in Management section

useful websites


01656 769467

The PAS are helpful and sympathetic. office open between 8am and 2pm every day except Sundays. If you leave a message they will get back to you within a few days.

useful books

Could It Be b12 by sally pacholok and JJ. Stuart

What You Should Know About Pernicious Anaemia and Vitamin B12 Deficiency‘ by Martyn Hooper

Useful documents/articles

Recent articles etc make it clear that patients symptomatic for B12 deficiency should be treated even if B12 blood levels are normal range

Google "BCSH Cobalamin and Folate Guidelines" . These guidelines came out in 2014. I was told in my area that the NHS should be following them.

The PAS has a summary of BCSH Cobalamin Guidelines in library section on website.

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Hi Cs,

My first question is, can you explain how you now know you specifically have thyroid, issues, are you Hypo or Hyper Thyroid. What did the 1st blood test result say for TSH?

Also, if you were better in 6 weeks on the Levo, what symptoms do you start with and which ones changed What was the dosage you were on initially, also

It is normal for 6 weeks to show results of changes in Levo Dosage, what was the result of the 2nd blood test if you had one.

After seeing NHS doctor and having a TSH plus possibly other things, blood test, when they said you don't have a Thyroid condition what did the private doctor prescribe you after he also presumably ordered blood testing. Did you show the private doctor your NHS results? You need to separate on test result sheets, which tests are for specific conditions.

I had a 16 point blood test Monday this week, I know which Are related to the Thyroid, which to the Liver, and which to my autoimmune condition.

Have a think about it?

I think it's possible/probable you DO NOT have a thyroid problem from what you have written, But yes, what ever is wrong NOW, needs checking out with your NHS Doctor, or try the Pharmacist at a good Chemist first and see what they say about your written results. not only on websites and communities, where you are looking for concirmation from non medical people! We are just ordinary people with medically proven conditions!

Are you taking lots of meds and self prescribing shop bought products. You could be causing your own I'll health problems or not! Please go and discuss with your doc, take the results with you, and get a proper medical diagnosis!

All my conditions are medically proven through the correct tests, MRI's etc. The correct proven medication is then prescribed by my doctor.

Whatever you do have tested and proven though, remember that taking too many wrong drugs whether OTC or not can cause problems. I learnt that the hard way! Don't you do the same. Put meds on and also labtestsonline for your test results explanations.


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