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Pernicious Anaemia Society
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Searching for a diagnosis (DESPERATELY) Please helpppp.... Is B12 deficiency / PA possible with these blood tests??? NEW HERE

Hi All,

I’m new on here and can’t believe just how brilliant this forum is so thanks for having me!!! (Apologies for the lengthy post).

I am a 29-year-old male that has had to return recently from Australia where I’ve been working for 8 years because of my undiagnosed illness, and am living with my parents (until I’m well again).

Hypothyroidism runs strongly in my family (aunty, mother, grandmother, male cousin and sister all have it) and I understand that my symptoms fit the bill but this has been disregarded because of my blood results so now I am going down the Vitamin B12 deficiency route. The symptoms that I’ve had for at least 6 months (probably getting worse over years now I think about it) are Extreme exhaustion / fatigue, Head fog / poor concentration, Dizziness / vertigo / balance problems, slow movements, thoughts and speech, poor focussing / double vision, memory loss / confusion, mental sluggishness, muscle cramps / weakness / joint aches, cold hands / feet, shortness of breath, high blood pressure 140/90, chronic cough that comes and goes aches and pains in joints, rash on cheeks that itches, itchy flakey scalp, hoarse voice, lack of coordination, joint stiffness, hot / cold intolerance and alcohol intolerance.

I have had a panel of blood tests which are below (range in brackets) and am currently on no medication. GP said I’m not Hypothyroid - Do you believe that I could be B12 deficient with these results? Or if it’s worth going to an Endocrinologist. If not, have you any idea where to point me next as my GP’s have run out of options. Thanks so much for any assistance at all. Have a neurologist appointment booked in for tomorrow so hoping he can shed some light! Is there anything I should ask him?

In addition to my blood tests I’ve also had a brain MRI, knee MRI and Chest X-Ray that has come back as normal.

Just trying to keep positive at the moment and know that I will eventually get diagnosed. Thanks so much for any advice / assistance provided.

Blood Tests

TSH = 2.83 mU/L (0.30 – 4.40) – Previous test in 2015 was 3.02

FT4 = 15.8 pmol/L (9.0 – 19.1)

FT3 = 4.2 pmol/L (2.6 – 5.7)

Thyroglobulin Ab = 2.3 IU/mL (<4.1)

Thyroid Peroxidase Ab = 2 IU/mL (<6) – Was .8 in Nov 2018

Folate S.Fol (Abbott) = 19.7 nmol/L (>7) and 12ug/L (>3) when taken last week.

Vit B12 = 180 pmol/L (135-650) and when measured last week 242 ng/L (130-900)

Vit D = 96 nmol/L (>50)

Active B12 = 66 pmol/L (>35)

Ferritin = 164 ug/L (30-300)

Iron = 18.7 umol/L (5-30)

Transferrin = 2.4 g/L (2-3.2)

TIBC (calc) = 54 umol/L (46-70)

Saturation = 35% (10-45)

DHEAS = 19.2 umol/L (3-16)***

PSA = 0.46 ug/L (.2-2)

Immunoglobulins

Immunoglobulin G = 10.74 g/L (6.2-14.4)

Immunoglobulin A = 4.46 g/L (.6-3.96)***

Immunoglobulin M = 1.6 g/L (0.48-3.04)

Immunoglobulin E = 101 IU/mL (<100)***

Allergy Serology

Cat epithelium = <0.01 kU/L Class 0 = Negative

Dog dander = <0.01 kU/L Class 0 = Negative

Grass Pollen = 0.34 kU/L Class 0 = Negative

Dustmite = 0.02 kU/L Class 0 = Negative

Alternaria alternata = 0.01 kU/L Class 0 = Negative

Haematology

Haemoglobin = 163 g/L (130-180)

RCC = 5.6 x10>12/L (4.5-6.5)

Haematocrit = .48 (0.39-0.54)

MCV = 86 fL (80-100)

MCH = 29.2 pg (27-32)

MCHC = 338 g/L (310-360)

RDW = 12.9 (10-15)

WCC = 5.8 x10>9/L (4-11)

Neutrophils = 3.33 x10>9/L (2-7.5)

Lymphocytes = 1.91 x10>9/L (1-4)

Monocytes = 0.43 x10>9/L (0 – 1)

Eosinophils = 0.06 x10>9/L (0.0-0.5)

Basophils = 0.04 x10>9/L (0.0-0.3)

NRBC = <1 x100WBC (<1)

Platelets = 249 x10>9/L (150-450)

ESR = 3 mm/h (1-20)

Biochemistry

Sodium = 140 mmol/L (135-145)

Potassium = 4.2 mmol/L (3.5-5.5)

Chloride = 103 mmol/L (95-110)

Bicarbonate = 28 mmol/L (20-32)

Urea = 6 mmol/L (3-7.5)

Creatinine = 85 mmol/L (60-110)

eGFR = >90 mL/min/1.73m2 (>59)

Bili Total = 12 umol/L (4-20)

ALP = 53 U/L (35-110)

GGT = 25 U/L (5-50)

LD = 149 U/L (120-250)

AST = 26 U/L (10-40)

ALT = 50 U/L (5-40)***

Phosphate = .96 mmol/L (.8-1.5)

Magnesium = 0.79 mmol/L (0.65-1)

Corr Calcium = 2.32 mmol/L (2.15-2.55)

Calcium = 2.3 mmol/L (2.15-2.55)

Serum Protein Electrophoresis (EPG)

Total Protein = 74 g/L (68-85)

Albumin = 48 g/L (39-50)

Globulin = 28 g/L (23-39)

Alpha 1 Globulin = 1.7 g/L (1-3)

Alpha 2 Globulin = 5.8 g/L (4-10)

Beta Globulin = 8.6 g/L (5-11)

Gamma Globulin = 9.8 g/L (7-16)

CK = 94 U/L (45-250)

CRP = 0.7 mg/L (0-5)

Cortisol AM = 464 nmol/L (138-650)

Antibodies to Extractable Nuclear Antigen (ENA)

SS-A 60 = Negative

SS-B = Negative

Ro-52 = Negative

Scl-70 = Negative

Jo-1 = Negative

Cenp-B = Negative

Sm = Negative

RNP = Negative

Ribo-P = Negative

Rheumatold Factor (Quantitative)

Rheumatold Factor (RF) = <6 IU/mL (<16)

Epstein-Barr Virus Serology

EBV VCA IgG = Detected

EBV NA IgG = Detected

EBV VCA IgM = Not Detected

Evidence of past, not current, EBV infection

Cytomegalovirus Serology

CMV IgG (CMIA) = Detected

CMV IgM (CMIA) = Not Detected

Suggestive of past, not current, CMV infection

Glucose

F Gluc Plasma = 5.1 mmol/L (3.6-6)

Lipids and HDL

Cholesterol = 5 mmol/L (3.9-5.5)

Triglycerides = 0.7 mmol/L (0.5-1.7)

HDL Chol. = 1.1 mmol/L (0.8-1.5)

LDL Chol. = 3.6 mmol/L (1.7 – 3.5)***

Androgens

Testosterone = 21.9 nmol/L (11.5-32)

SHBG = 35 nmol/L (15-50)

Calculated Free Testosterone = 468 pmol/L (260-740)

Mercury-blood = 53 nmol/L (<60)

Plasma Metanephrines

P-Normetanephrine = 340 pmol/L (<590)

P-Metanephrine = 330 pmol/L (<447)

P-3 Methoxy tyramine = <50 (<181)

Cyclic Citrullinated Peptide Antibodies = <5 U/mL (<5)

Coeliac Serology

Deamidated Gliadin IgA 2 U/mL (<15)

Deamidated Gliadin IgG <1 U/mL (<15)

Tissue Transglutaminase IgA <1 U/mL (<15)

Tissue Transglutaminase IgG <1 U/mL (<15)

Anti-DNA Antibodies (RIA) <5 IU/mL (0-6)

Lyme IgG = Negative

Lyme IgM = Negative

HIV ½ Antigen and Antibody = Negative

Hepatitus C Ab Abbott = Not Detected

Hepatitus C = Not Detected

Chlamydia trachomatis PCR = Not Detected

Neisseria gonorrhoeae = Not Detected

Hepatitis B Surface Ag = Not Detected

Hepatitus B Surface Ab = Not Detected

No evidence of hepatitis B infection

29 Replies
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Sorry to here about your health problems. Alot of these symptoms do happen with b12 defiency. My first symptom was vertigo. However I'm not medical but your blood results don't fit unless you are on supplements or taking folate. ?? Others on here will understand your results better. Trouble is the symptoms fit other conditions too like Addison s , autonomic dysfunction and the list goes on. So a matter of deleting things. Some doctors will treat symptoms so you might get a trial of b12 injections . I hope you get some answers soon.

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Thanks so much. I just ordered 100 B12 1000 m/g vials so I will give self injecting a crack... do you know how many injections I should do per day? Cheers.

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No I don't. I wouldn't think more than 1! Others will know more . Have you not seen a doctor about it for advice and what sort of b12? Also have you had a nurse show you how to inject?

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I’ve seen that many doctors and got nowhere so I’m going it alone. I heard off someone from this site that Hydroxocobalamin is what is used in the NHS so I’m going with that. I figured that it can do more good than harm. Will just watch a YouTube clip on how to do it and follow that. Think I’ll start with a jab every other day and see how that goes for a month or so.

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That's what I'm having and every other day but at the surgery. Hope it helps you.

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Thank you very much! Has it helped you?

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Yes thanks. My B12 reading was 106 serum blood in October. I'm continuing as still making improvements. Long haul though.

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Please could you tell me how I can possibly go about getting a trial of b12 injections please?I put a post on yesterday,I feel so ill like this poor gentleman,and am at my wits end and haven't got any sense of direction.I have Hashi's and Neuro symptoms.Thank you!

Health 1989 I hope you an get sorted,good luck!

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Thanks Debzeewestmids - goodluck to you too!

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Sorry only just seen this . Poorly yesterday. I thought if you discussed it with your specialist . The only reason I got more injections was from the neurologist writing to the g.p to 'trial' every other day b12 injections (bnf guidlines anyhow.) ( i learnt from here id missed a stage of treatment)to see if any improvements made. My G.p. actually said and if they don't work what next?? I was dumb founded. She is the doctor. They are helping though. Perhaps the g.p just put out I won't take antidepressants?? I hope you get what you need to feel better than you do.

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B12 is at the low end of the normal range but allowing for the difference in units the two are remarkably consistent, so in that sense not indicative of an absorption problem - which would lead to falling B12 levels. What was the time interval between the tests.

Your active B12 is quite good but seems to be making up more of the B12 in your blood than would normally be the case - usually its 20% but yours is around 35% which could mean that something else is going on with B12 that isn't an absorption problem.

There is no sign of macrocytosis - larger rounder red blood cells.

No idea what most of the Immunoglobulin which are out of range mean - not related to B12.

Most of what is out of range - including the LDL cholesterol is marginal.

Is there a typo in the range for the second test - should the low point be 180 rather than 130?

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Hi Gambit62 - no typo there that’s what the range was on the nhs. The first test was done in Australia a year ago and the second was done last week in the uk... thanks so much for your input. Are you suggesting that the Vit B12 levels that I have are too normal for that to be my issue of symptoms? Cheers.

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I am saying that they aren't indicative of a B12 absorption problems - particularly if they are from a year apart, but the ratio between active and serum B12 looks off and could indicate a problem elsewhere in the metabolism of B12 - may be that raising serum B12 levels might resolve that.

In order for your cells to have enough B12 you have to a) absorb it from your food, b) transfer it from your blood to your cells and c) use it in your cells.

The test results aren't indicative of a problem with a) because the levels aren't falling - which is what you would expect with an absorption problem - but they could (ratio between active and serum B12) indicate a problem with step b).

This is assuming that you weren't using high level B12 supplements between the two tests.

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Thanks so much - No i was on no suppulments at all for any of those tests.... Just a balanced healthy diet. Do you think i should definitely give the B12 injections a try then? and how long do you think it would take before feeling normal again? Weeks, months, years?

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I think you should follow up on the items in the blood test that are showing up as abnormal before resorting to B12 - I think the DHEA result could indicate a problem with the endocrine system as I think it is related to adrenalin but not sure - I am not a medic and this would seem like a good point at which to remind you that this site is not a substitute for professional medical advise

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Will do - thanks! I’ve got a appointment booked on the 5th March with an endocrinologist so do you think he would be able to investigate the DHEA issue?

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better placed than me - though it seems that most endos specialise in diabetes, ie pancreas and insulin so it may not be his specialism.

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Thanks again

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I'm no expert but looking at the thyroid results and given your family history I'd say that you're more likely to have a thyroid problem. Take the thyroid results and post on the thyroid forum here, there are some excellent posters who are very well informed when it comes to thyroid issues. As for your doctor 🙄

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Hi Espeegee, have done thanks - the forum and doctors said my thyroid was all too normal for it to me a thyroid issue and pointed me down the B12 path. I went to the neurologist today and he said it’s an ME / Chronic Fatigue issue 🙁 just annoying because you can’t test for that!

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Standard response by a practitioner who clearly stopped learning when he left med school. So many brick walls in medicine.

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I think specialists, like neurologists, can only really rule things out in their field (ms, motor neurone etc). And then if it’s not that they just say chronic fatigue. I guess the only positive that I can take is that it doesn’t seem to be a serious neurological disorder which I’ll have to take as a plus and look down other avenues. I’ve just had that many tests etc that maybe I’m going to have to come to terms with it being ME or something and hope it just passes over time.

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Hi, I am not a medical trained person, from my point of you which I feel that you're very anxious( I had similar experience) and stress.

your blood works almost good without DHEAS = 19.2 umol/L (3-16)***,

Immunoglobulin A = 4.46 g/L (.6-3.96)***

Immunoglobulin E = 101 IU/mL (<100)***

ALT = 50 U/L (5-40)***

Don't worry your b12 now because it's right for now, should focus on

Those 4 of above lists, they are slightly higher than normal, follow up with those . Sometimes stress, tired will confuse body systems, but will adjust by itself to back to normal. So after few weeks you do blood check again, if still abnormal then ask the GP do futher investigate.

Personally I think those abnormal tests might due to alcohol. You said you was alcohol intolerance. Think of alcohol .

Keep positive

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Hi X2018 thanks so much for the input and advice! I did suffer from extreme anxiety of not sleeping all night, throwing up bile in the morning, working a full day in banking and going for runs and gym after for about 6 months non stop but I thought the anxiety was because of physical health issues. I just didn’t think that the anxiety would be able to cause such exteme symptoms and crippling exhaustion for me to be bedridden as I’m an ex athlete / 29 year old / was at peak fitness before all this. But maybe you’re right.... did you get over the anxiety? / take medication for it? And did it pass? I’m just worried that I’ve done some internal damage in my brain that it’s irrapairable and I will be like this for life.

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I’m not a big alcohol drinker but all the doctors have said that those results are only slightly out of the range and nothing to worry about. Thanks

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Anxiety will impact on sleeping and digestive system, then you would feel tired etc so sleeping is very important.

I did drink lavender tea one hour before bed which calmed down my mind and mood. During the day focus on your work and health style life( 50' physical exercise) , it does helped me. Give it ago. And believe that you had done MRI on your brain , the result shown that you've got health brain, You're health.

Positive make a difference.

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Thank you! Will try to keep positive

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I recommend reading Could it be B12 an Epidemic of Misdiagnosis by Sally Pachloc.

Ask for a MMA test and homocysteine (HCY) test these could indicate a problem with processing B12.

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Thank you... I’m just going to trial injections myself and see if it makes a difference... the nhs is too stingy with blood tests and it’s BT worth the hasstle if the answer is to inject anyway. Thanks again for the input

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