New to the forum advice please - Pernicious Anaemi...

Pernicious Anaemia Society

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New to the forum advice please

LizzieJ8 profile image
8 Replies

Hi I have been advised by the thyroid UK forum to come here, I have high antibodies (Hashimotos) and I have posted symptoms and results below. Supplementing 210mg ferrous fumarate once a day and 800iu vitamin D3 both on prescription and taking 25mcg Levothyroxine for the hypoythyroidism/Hashimotos diagnosed in 2012. Thank you Advice welcome.

Serum folate 2.0 ug/L (2.50 - 19.50 ug/L)

Serum vitamin B12 214 pg/L (190 - 900 pg/L)

Serum ferritin 56 ug/L (30 - 400 ug/L)

Iron 9.2 (6.0 - 26.0)

Transferrin saturation 13 (10 - 30)

MCV 77.1 fL (80 - 98 fL)

MCHC 386 (310 - 350)

MCH 28.1 (28 - 32)

RBC count 4.41 (3.80 - 5.80)

WBC count 6.17 (4.0 - 11.0)

Platelets 228 (140 - 400)

Haemoglobin estimation 120 (115 - 150)

Neutrophil count 0.5 (0.0 - 1.0)

Basophil count 0.0 (0.0 - 0.2)

Eosinophil count 0.2 (0.0 - 0.5)

Monocyte count 0.8 (0.0 - 1.0)

Lymphocyte count 1.4 (0.5 - 2.0)

Copied from Thyroid UK main site:

Excessive tiredness

High cholesterol

Cold extremities

Slow movements

Slow speech

Pins and needles

Breathlessness

Palpitations

Anaemia

Lack of co-ordination - especially of hands and feet

Insomnia

Loss of libido

Repeated urinary tract infections

Heavy eyelids

Hoarse voice

Goitre

Muscle cramps and weakness

Joint stiffness

Heat/cold intolerance

Low basal temperature

ADHD

Vertigo

Balance problems

Dizziness

Puffiness of eyes

Puffiness of face

Puffiness of feet

Puffiness of ankles

Difficulty swallowing

Sore throats

Swollen tongue

Choking fits

Dry mouth

Sensation of lump in throat

Numbness in legs

Numbness in toes

Memory loss and confusion

Mental sluggishness

Poor concentration

Loss of drive

Nightmares

Body hair loss

Head hair loss

Brittle hair

Eyebrow loss

Eyelash loss

Brittle nails

Flaky nails

Dry skin

Flaky skin

Pallor

Boils and spots

Eczema

Bruising

Migraines

Pressure headaches

Back and loin pain

Wrist pain

Carpal tunnel syndrome

Burning feet syndrome

Alcohol intolerance

Constipation

Abdominal distension/flatulence

High blood pressure

Slow/weak pulse

Heavy periods

Poor focusing

Double vision

Dry eyes

Gritty eyes

Blurred vision

Noises in ears

Deafness

Tinnitus

Easily upset

Wanting to be solitary

Depression

Lack of confidence

Increased sweating

Weight loss

Shakiness

Infertility

Longer cycles

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LizzieJ8
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8 Replies
Gambit62 profile image
Gambit62Administrator

please see response on this post

healthunlocked.com/pasoc/po...

your blood work is characteristic of microcytosis - consistent with iron deficiency

your folate is below range and your B12 is on the low side

if you have a history of B12 levels that shows a downward trend then that would be the clincher in relation to an absorption problem specifically relating to B12.

Are these results from a private blood test? If so suggest that you share with your GP along with details from the above post

LizzieJ8 profile image
LizzieJ8 in reply toGambit62

Thanks very much for this information. B12 has been low more often than high but on occasion has shot up despite not supplementing or change in diet. The results are from an NHS blood test and GP is deciding not to take action on below range folate. I will go back to GP on Tuesday and insist they do something.

LizzieJ8 profile image
LizzieJ8 in reply toLizzieJ8

Also positive for intrinsic factor antibodies? Does that mean GP should be doing something about this? Thanks again.

Gambit62 profile image
Gambit62Administrator in reply toLizzieJ8

if you have a positive for IFA and you weren't supplementing then that means that you have PA in the sense of an autoimmune response that is attacking the mechanism that allows you to absorb B12 - it can also lead to reduced stomach activity which will affect your ability to absorb other vitamins and minerals.

Your GP should definitely be treating you with loading shots (using the more aggressive regime for neurological involvement*) and then on to loading shots every 2 months - though no guarantee that that would be enough as a maintenance regime.

* 3xweekly until symptoms stop improving - review at 3 weeks.

Gambit62 profile image
Gambit62Administrator in reply toLizzieJ8

the other issue would be around the timescales on the symptoms - if they came on quickly that would point to the folate deficiency - if they have developed slowly then that would point to B12 - the overlap with thyroid does make it all very difficult to evaluate what symptoms are caused by what though - so think approach to take with GP is getting them to a) look at absorption problems and b) be open to the idea that there is more than thyroid going on.

When you say shot up - how much? another thing to check is that the same units have been used each time as test results can be expressed in two different units - ng/L and pmol/L - though the results above are from measures that would produce the higher figures.

LizzieJ8 profile image
LizzieJ8 in reply toGambit62

All levels came back in pg/L.

June 2017

Serum vitamin B12 214 pg/L (190 - 900 pg/L)

Mar 2017

Serum vitamin B12 448 pg/L (190 - 900 pg/L)

Jan 2017

Serum vitamin B12 537.8 pg/L (190 - 900 pg/L)

Aug 2016

Serum vitamin B12 694 pg/L (190 - 900 pg/L)

Feb 2016

Serum vitamin B12 363 pg/L (190 - 900 pg/L)

Nov 2015

Serum vitamin B12 352 pg/L (190 - 900 pg/L)

Jan 2015

Serum vitamin B12 362 pg/L (190 - 900 pg/L)

JMN2017 profile image
JMN2017

Just wondering, can/does the auto-immune process fluctuate, thus causing a change in B12 levels? I'm asking coz I don't have a clue but it could potentially be why results are up, then down, then up again etc??? ;)

Gambit62 profile image
Gambit62Administrator in reply toJMN2017

I believe there are a few conditions (eg liver and kidney problems) that can cause the liver to dump the B12 that it is storing, resulting in raised B12 levels - but think the implication is that these would normally raise levels above the top of the normal range.

LizzieJ8 Prior to Feb last year it looks as if the levels were quite stable then they shot up in August 2016 and have been falling ever since. The drop is quite significant and would support an absorption problem - and IFA being positive would suggest that was PA.

The PAS has a microsite aimed at medical professionals - you could suggest to your GP that they take a look at it if they want to understand more about B12.

pernicious-anaemia-society....

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