Pernicious Anaemia Society
15,530 members10,925 posts

Help please

Hi I am from the Thyroid UK forum as I have untreated hypothyroidism. Could someone please advise if I need to push for more tests into pernicious anaemia. I have tested negative once for intrinsic factor antibodies but positive before that. A list of my symptoms from the B12 deficiency site are below.

Tinnitus

Tremor

Paresthesia - numbness, tingling and pain

Confusion / disorientation

Weakness of legs, arms, trunk

Impaired vibration - position sense

Abnormal reflexes

Unsteady or abnormal gait / falls

Ataxia (Neurological disorder affecting balance, coordination and speech)

Balance problems

Difficulty walking

Dizziness

Restless legs

Visual disturbances / decreased-blurred vision / damage of optic nerve

Forgetfulness, memory loss

Dementia / intellectual deterioration

Paralysis

Impaired fine motor coordination

Muscular spasticity

Bladder or bowel incontinence

Impaired pain perception

Nocturnal cramping

Disturbance in taste and smell

Optic atrophy

Confusion/disorientation

Psychosis

Hallucinations

Memory loss

Delusion

Depression

Suicidal ideation

Mania

Anxiety

Paranoia

Irritability

Apathy

Personality changes

Violent/aggressive behaviour

Schizophrenic symptoms

Sleep disturbances

Insomnia

Changes in taste, smell, vision, and sensory/motor function which can be mistaken for psychiatric problems

Anaemia

Generalised weakness, fatigue

Breathlessness

Pallor / jaundice

Chronic fatigue

Vascular Problems

Orthostatic hypotension/ Postural hypotension (low blood pressure when standing, which can cause fainting and falls)

Postural orthostatic tachycardia

palpitations

Infertility

Loss of appetite/weight loss or anorexia

Epigastric pain (poor digestion, bloated feeling after eating small or normal sized meals)

IBS - Irritable bowel syndrome

Constipation

GERD - Gastric reflux disease - ulcers / mouth ulcers

Decreased stomach acid

Gastropareisis

Helicobactor pylori infection

SIBO Small intestinal bacterial overgrowth

Malabsorption syndromes - Crohn's disease, coeliac disease etc)

Liver disease

Dry cracked corners of the mouth

Premature greying

Glossitis - swollen / sore tongue, geographic tongue

Fainting/light headedness

Nominal aphasia - difficulty recalling names or words

Radiculopathy - chronic pain disorder

Increased susceptibility to infections

Poor wound healing

Malnutrition

Skin hyper pigmentation or hypo pigmentation

DEC 2017

FERRITIN 24 (30 - 400)

FOLATE 2.2 (2.5 - 19.5) retaken folic acid since PA test for intrinsic factor showed nothing

VITAMIN B12 207 (190 - 900)

Thankyou

11 Replies
oldestnewest

Hi Klairey

For a start if you have thyroid problems (such as Hashimoto’s thyroiditis and Grave’s disease) they may put you at risk of developing a Vitamin B12 deficiency.

By the result above you are/were already Folate deficient.

It is important that your Folate level is "healthy" 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.

Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

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

In other words your doctor should be treating you and your neurological symptoms and not just looking at the computer screen

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 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

1 like
Reply

Personally I don't think you need more tests - the above should be strong enough evidence that you have some form of absorption problem going on - unless your diet is particularly crap.

IFA is a good test for confirming you do have PA but not a good test for ruling it out as it gives false negatives 40-60% of the time depending on the assay method. The BCSH guidelines refer to IFAB-negative pernicious anaemia as a result.

A full blood count might be useful - to confirm that iron is an issue - but also might come back ambiguous as you may have macrocytic (B!2/folate = larger rounder red blood cells) masking microcytic (iron based - smaller red blood cells) or vice-versa.

Have you discussed with your GP?

Refer them to the the BCSH guidelines on diagnosis and treatment of vobalamin and folate deficiencies which they can access through the BNF but can also be accessedhere

onlinelibrary.wiley.com/doi...

this article on thyrogastric syndrome might also be interest

ncbi.nlm.nih.gov/pmc/articl...

2 likes
Reply

Thankyou I have macrocytic anaemia and not discussed with GP. Diet is ok

Reply

You have listed h pylori as one of your symptoms. H pylori damages the cells in the stomach and causes inflamation. This causes a reduction and/loss of the acid and intrensic factor in your stomach. These issues will prevent your from being able to absorb at least iron and b12 and possibly other nutrients.

Lack of these nutrients can cause thyroid issues as both plus others are needed for the thyroid to work properly.

Since you are not in the deficient b12 range and gps seem to be technicians only addressing lab results when outside of range, you can ask for testing of homocystein and mma. These can indicate a deficiency in the presence of "normal" serum levels.

I am not medically trained but believe you are needing treatment right away.

2 likes
Reply

Thankyou I tested deficient once in B12

Reply

Intrinsic factor positive once now negative

Reply

You can push for further testing but it’s hard to diagnose PA as there’s no reliable tests.

Looking at the results your B12 is low and could be a cause of many of the symptoms listed.

Folate is also low and has overlapping symptoms like low B12.

Your B12 and folate need to be at higher levels preferably towards top end of range.

If you start any B12 your blood results will be skewed and show up high.

Sadly doctors don’t know much about B12 and most will give you improper treatment.....usually being 6 loading doses and then 1 injection every 3 months, which for most people (if not all) is not enough.

Injections are best and quickest form of treatment. It’s very unlikely your doc will agree to the proper treatment needed.

If you have low B12 and have neurological symptoms the standard treatment is 6 loading doses then 1 injection every other day until ‘ no further improvement in symptoms’.

So best treatment is B12 injections. 6 loading doses over 2 weeks then weekly injections.

You may need to self inject which is not hard at all.

If you want to wait and go through further testing it will take a long time and tests are not 100% accurate...like IFA test, unless it’s obvious you have PA by looking at your red blood cell.

(Usually enlarged I think)

It’s hard to get proper diagnosis so it’s up to you according to the severity of your symptoms and health if you want to SI (Self Inject).

If you decide to self inject 6 loading doses (3 per week for 2 weeks) then 1 injection every week works well. You can purchase B12 online.

You also need to take Folic Acid daily with injecting.

Doctor might give you or already given you 5mg Folic Acid to reach good levels, then reduce to daily recommended intake of 400ug Folic Acid.

Also good to get your Iron and Vit D tested as there’s similar symptoms of low.

B12 gives you very low mood of deficient or very low, taking B12 injections helps greatly for improving depression/Low mood.

Self harming/suicidal and negative thoughts I would put down due to low B12.

(I inject every 2 weeks, have been on anti depressants for years, but B12 helps more than the antidepressants)

B12 orally might work if you don’t have absorbtion problems (as you do if you have PA).

I’ve never bothered with tests for absorption problems as it takes a very long time and no accurate tests for proper diagnosis so just SI now as I knew docs wouldn’t give me proper treatment after reading all the stories on this site.....SI made me pull myself together and live a normal lifestyle..

You can get further info on where to purchase B12 and how to SI on this site if you would like to know.

Reply

Iron is 7.1 (6 - 26)

Ferritin 24 (30 - 400)

Vitamin D 26.6 (25 - 50 deficient)

Thankyou

Reply

Will help to take all 3, deficient in Ferritin, borderline on others.

Gp should give you all 3.

Reply

Intrinsic factor positive once now negative

Reply

It’s never accurate.

Reply

You may also like...