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Pernicious Anaemia Society
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Newish 3 mths on B12 still tingling and shattered.

ANTINUCLEAR ABS (PHADIA)

Anti-nuclear IgG antibody level 0.2 [0.0 - 0.69]

CTDC ~

Reference range (Ratio):

Negative: less than 0.7

Equivocal: 0.7 - 1.0

Low Positive: 1.1 - 4.0

Moderate Positive 4.1 - 10.0

Strong Positive >10.0B12 & FOLATE

Serum vitamin B12 level 265 pg/mL [180.0 - 914.0]

Plasma folate level 6 ng/mL [4.0 - 20.0]

FULL BLOOD COUNT

Haemoglobin concentration 139 g/L [120.0 - 150.0]

Total white blood count 9.2 10*9/L [4.0 - 10.0]

Platelet count - observation 378 10*9/L [150.0 - 450.0]

Haematocrit 0.422 l/l [0.36 - 0.46]

Mean cell volume 86.1 fL [83.0 - 101.0]

Mean cell haemoglobin level 28.4 pg [27.0 - 32.0]

Mean cell haemoglobin concentration 329 g/L [315.0 - 345.0]

Red blood cell distribution width 12.9 % [11.6 - 14.0]

Red blood cell count 4.90 10*12/L [3.8 - 4.8]

Above high reference limit

Neutrophil count 5.6 10*9/L [2.0 - 7.0]

Lymphocyte count 2.4 10*9/L [1.1 - 3.5]

Monocyte count - observation 0.6 10*9/L [0.2 - 1.0]

Eosinophil count - observation 0.5 10*9/L [0.0 - 0.5]

Basophil count 0.1 10*9/L [0.0 - 0.1]

Percentage neutrophil count 61 %

Percentage lymphocyte count 26 %

Percentage monocyte count 7 %

Percentage eosinophil count 5 %

Percentage basophil count 1 %

19 Replies
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Does anyone know what they mean please

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are these results from before or after you started treatment for B12 deficiency?

If after (and assuming a few months after) then your B12 is very low for someone who is on B12 shots - implying that really you need the maintenance shots more frequently than 3 months and this is likely to be why your symptoms are back with a vengeance.

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Hi

Yes after 3x 50mcg tablets once a day , no action needed my gp says it's fine , I had beg for the medicine in the place I was the bottom at 180 gp didn't think it was the problem I was told it was depression.

Thanks for reply

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okay, so you aren't actually on B12 shots but taking an oral dose which is intended to and would resolve a deficiency that was dietary in nature.

What is your diet like - do you eat meat/fish/dairy/eggs?

if your B12 deficiency isn't dietary then you are on the wrong treatment. The oral dose has resulted in quite a small increase in levels in your blood considering the dose you are taking so unlikely that you actually have a dietary deficiency. However, the fact that the dose you have had has raised your levels a little may mean it is quite difficult to convince your GP that the treatment you receive is inadequate.

Could you clarify if a dietary deficiency is likely?

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Also, do you know if you had any signs of anaemia in blood work before you had the tablets? Particularly any signs that your red blood cells were larger and rounder than normal - there is no sign of anaemia in your latest blood work.

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Hi

I don't know about my blood will post the results from last test maybe you can make it out. I have been doing slimming World which is plenty of veg fish , fruit and eggsso don't think it is dietary. Regards Shal

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am I correct in assuming that you are UK based?

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TSH.

Plasma TSH level 3.91 mu/L [0.3 - 5.6]

GUIDE TO INTERPRETATION ~

TSH is done as the first line test and FT4 is

reflexed if TSH is <0.5 or >5.0 mu/L.

B12 & FOLATE

Serum vitamin B12 level 180 pg/mL [180.0 - 914.0]

Plasma folate level 5 ng/mL [4.0 - 20.0]

Previous test

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3mths ago

FULL BLOOD COUNT

Haemoglobin concentration 142 g/L [120.0 - 150.0]

Total white blood count 8.6 10*9/L [4.0 - 10.0]

Platelet count - observation 360 10*9/L [150.0 - 450.0]

Haematocrit 0.438 l/l [0.36 - 0.46]

Mean cell volume 87.8 fL [83.0 - 101.0]

Mean cell haemoglobin level 28.5 pg [27.0 - 32.0]

Mean cell haemoglobin concentration 324 g/L [315.0 - 345.0]

Red blood cell distribution width 13.2 % [11.6 - 14.0]

Red blood cell count 4.99 10*12/L [3.8 - 4.8]

Above high reference limit

Neutrophil count 5.2 10*9/L [2.0 - 7.0]

Lymphocyte count 2.2 10*9/L [1.1 - 3.5]

Monocyte count - observation 0.7 10*9/L [0.2 - 1.0]

Eosinophil count - observation 0.4 10*9/L [0.0 - 0.5]

Basophil count 0.1 10*9/L [0.0 - 0.1]

Percentage neutrophil count 60 %

Percentage lymphocyte count 26 %

Percentage monocyte count 8 %

Percentage eosinophil count 5 %

Percentage basophil count 1 %FULL BLOOD COUNT

Haemoglobin concentration 142 g/L [120.0 - 150.0]

Total white blood count 8.6 10*9/L [4.0 - 10.0]

Platelet count - observation 360 10*9/L [150.0 - 450.0]

Haematocrit 0.438 l/l [0.36 - 0.46]

Mean cell volume 87.8 fL [83.0 - 101.0]

Mean cell haemoglobin level 28.5 pg [27.0 - 32.0]

Mean cell haemoglobin concentration 324 g/L [315.0 - 345.0]

Red blood cell distribution width 13.2 % [11.6 - 14.0]

Red blood cell count 4.99 10*12/L [3.8 - 4.8]

Above high reference limit

Neutrophil count 5.2 10*9/L [2.0 - 7.0]

Lymphocyte count 2.2 10*9/L [1.1 - 3.5]

Monocyte count - observation 0.7 10*9/L [0.2 - 1.0]

Eosinophil count - observation 0.4 10*9/L [0.0 - 0.5]

Basophil count 0.1 10*9/L [0.0 - 0.1]

Percentage neutrophil count 60 %

Percentage lymphocyte count 26 %

Percentage monocyte count 8 %

Percentage eosinophil count 5 %

Percentage basophil count 1 %Haemoglobin A1c level

Haemoglobin A1c level - IFCC standardised 44 mmol/mol

Erythrocyte sedimentation rate 10 mm/h [0.0 - 7.0]

Above high reference limit

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Yes essex area sorry may have doubledup.

Thanks for looking

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shal61 you can find the standards that the BCSH (British Council for Standards in Haematology) produced for diagnosing and treating cobalamin and folate deficiencies here

onlinelibrary.wiley.com/doi...

you may not be able to access them if you are based outside the UK. If you are in the UK then your doctor can access them via the BNF.

The main points that are relevant and that you need to draw to the attention of your GP are

a) Serum B12 is not a gold standard test. People vary a lot when it comes to B12 with the result that used as a single measure to determine B12 deficiency it will result in missing 25% of people who are deficient but also catching 5% who aren't.

b) whilst macrocytosis is a common symptom of B12 deficiency it isn't a defining characteristic and 25% of people with B12 deficiency will not show signs of macrocytosis when the first present.

c) Dietary deficiencies as the cause of B12 are quite rare.

d) The test for PA as a specific cause of B12 deficiency, IFA is notoriously prone to false negatives - 40-60% of the time depending on the assay method - so a negative is a long way from proving that PA isn't the cause of deficiency.

e) other potential causes of a B12 deficiency include coeliacs, crohn's, low stomach acidity (which may be a sign of PA ... and the symptoms of low stomach acidity are prety much the same as those of high stomach acidity), h pylori infection, tapeworm (generally very rare :)), gastric surgery affecting the ileum, a long list of drug interactions (including PPIs, metformin, NSAIDs). The initial treatment for all absorption problems is loading shots. Loading shots will be necessary for life if the absorption problem isn't reversible (eg h pylori infection).

You can find a list of symptoms here

pernicious-anaemia-society....

It would also be useful to draw your GPs attention to what symptoms you have and how long you have had them. The body stores B12 in quite good levels in the liver but releasing the store depends on the same mechanism that you use for absorbing B12 so if you have an absorption problem it is like having a leaky tap on a reservoir - not much of the water gets through. However, the fact that it is stored means that developing a full blown deficiency can take years or even decades to develop.

Unfortunately GPs tend to be quite hazy when it comes to B12 and how it works, what will cause a deficiency and how to treat it. Hoping that your GP is open to learning if approached in the right way. They might find it useful to look at this subsection of the PAS website

pernicious-anaemia-society....

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Thanks very much, unfortunately I don't think I will get far with her , I wrote my symptoms down so I didn't forget her reply was we are all getting older and you have a lot on your plate you are depressed.

If it was tape worm would you loose wait as struggling with weight loss awful thought worms.

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would certainly be worth pursuing the weight loss. tapeworm is unlikely unless you have near raw fish but is a possibility.

Your last tests didn't include HbA1c which is a marker for diabetes, some forms of which can lead to weight loss.

Thyroid is another possibility.

All conditions that have an overlap of symptoms.

Sometimes you can get a better response by putting things in writing to the GP and then following up with an appointment - and if you have a trusted friend that can go with you that can also help.

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Hba1c was in the prediabetes range in your results from 3 months ago

diabetes.co.uk/what-is-hba1...

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Hi underactive thyroid 16 yrs board line diabetes why trying to lose weight not working at the moment, sorry didn't add these did thyroid site first 125mcg levo last blood test was good

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bit confused - if you are trying to lose weight, why are you concerned about weight loss.

Diabetes: are you excessively thirsty and urinating a lot?

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I am 6 stone over weight and is very slow coming off I'm desperate to lose it . Diabetes is borderline. It's the P A symptoms that are the problem looking on the sites I have many conected with it and gp just doesn't listen.

Regards Shal

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I am sorry you are feeling so low. Your b12 is low. Too low considering you have supplimented and your symptoms. Your folate is also low considering you are eating fruits and vegtables. In my non medical opinion, This indicates an absorbtion problem. If you are having a problem absorbing b12 that is one thing, because it is a the largest nutrient molecule and can be difficult to absorb without/low intrinsic factor. Folate on the other hand should be readily absorbed from a healthy diet.

Based on numbers only... if you took 150 mcgs per day for 90 days, you swallowed 13,500 mcg of b12.

Your b12 raised by 85 points.

13,500 ÷85= 159mcgs to raise your level 1 point in addition to your diet.

For healing you need to raise your b12 to a high value. Lets say 1000. So if you want to raise your b12 another 745 points you need to increase your intake of b12.

745 X 159 = 118,455total mcgs needed to raise your b12 to 1000

118,455 ÷30 days = 3,945 mcgs per day. I would space it out throughout the day, not all at once, but that is just me. No science behind my thought.

Of course this is not scientific. Im just trying to offer a suggestion.

Some people want their number around 1500, some want it around 2,000. That is up to you.

I am hoping, you will be able to convince your gp to give you injections. In the absence of that, if you are not willing to self inject, supplimenting with very high dose is an option. It does not work for everyone.

Please know b12 will not work alone. You need a multivitamin with folate. I say multivitamin because if it is an absorbtion problem you could be low in lots of vitamins AND minersls.

Fyi... hypothyroidmom.com/10-nutri...

Once your body has b12 you will need to monitor your thyroid's changes.

I really hope you get to feeling better soon. Everyone on here knows how bad it feels to be shattered. There is recovery.

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Thanks so much for your input.

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