Pernicious Anaemia Society
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Help needed please

Hi I have iron deficiency and folate deficiency and pernicious anaemia, also Hashimotos. I have been given just one B12 injection and this was given at start of June 2017, how many should I be getting please? Symptoms from B12 deficiency page are

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

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

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

Macrocytosis (large red blood cells)

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

Female

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

SIBO Small intestinal bacterial overgrowth

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

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

Results are below thank you

May-2017

Ferritin - 74 (30 - 400) taking 1 ferrous fumarate tablet a day for iron anaemia diagnosed in 2013, iron infusion corrected it in 2016

Folate - 2.35 (2.50 - 19.50) taking 1 folic acid tablet a day for folate anaemia diagnosed in 2016

Vitamin B12 205 (180 - 900) given B12 injection for pernicious anaemia diagnosed in Feb 2017

Total 25 OH vitamin D 68.8 (50 - 75 suboptimal) taking 6000iu D3 for vitamin D deficiency diagnosed in 2013, been taking the 6000iu since 2015

7 Replies
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What was your b12 level before injections?

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Hi the level before injection was 205 (180 - 900)

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My level was 250 in April. What made your doctor decide to do the injections? I'm sure many would have missed it since it's technically within the reference range.

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Hi I have positive intrinsic factor antibodies

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What test is that? I'm new to all of this. Family history of PA

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IFA is the name of the test - it is a problematic test in as much as it gives false negatives 40-60% of the time depending on the assay method, so a negative result is a long way from demonstrating that you don't have PA.

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Lily - where are you based? treatment protocols vary from country

- there are guidelines in the UK and you are certainly not being treated in accordance with those guidelines. Given that you have neurological symptoms the recommended treatment in the UK would be loading shots 3x weekly until symptoms stop improving (review at 3 weeks) followed by maintenance shots every 2 months.

There aren't any federal guidelines in the US and treatment seems to be very much down to GP and what will be covered by medical insurance (which is unfortunately, increasingly pushing towards high dose oral).

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