Pernicious Anaemia Society
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Help with test results

Hi

I wonder if anyone could offer some advice on my recent blood test results. Doctors have said retest in 1 year?! My background:

I have hashimoto's - diagnosed 3 years ago but probably had for 20 years! About 1 month ago I had the flu, self diagnosed but it felt like flu. Since then I have been exhausted, low in mood headachy and suffering from random joint pain, on and off. I went to the doctors and asked for a thyroid check. They also test lots of other thing but ironically forgot to ask for the thyroid so I have to go back tomorrow for this! Anyway these are the results - my are borderline and suggest PA but am I overthinking this

Serum calcium level (XE2q3) 2.24 mmol/L [2.15 - 2.7]

Serum adjusted calcium concentration (Xabpk) 2.28 mmol/L [2.2 - 2.6]

Serum inorganic phosphate level (XE2q4) 1.3 mmol/L [0.8 - 1.5]

Serum alkaline phosphatase level (XE2px) 46 iu/L [30.0 - 130.0]

Serum albumin level (XE2eA) 40 g/L [35.0 - 50.0]

Serum 25-Hydroxy vitamin D3 level (XaEQa)

Serum 25-Hydroxy vitamin D3 level (XaEQa) 47.4 nmol/L <25 nmol/L: Vit.D deficiency, requires replacement 25-50 nmol/L: Vit.D insufficiency, consider replacement 50-150 nmol/L Adequate Vitamin D status

ALT 17 iu/L [1.0 - 34.0]

Serum gamma-glutamyl transferase level (XaES3) 22 iu/L [0.0 - 37.0]

Serum bilirubin level (44E..) 9 umol/L [3.0 - 21.0]

Serum total protein level (XE2e9) 78 g/L [60.0 - 80.0]

Total white blood count (XaIdY) 5.4 10*9/L [3.7 - 11.1]

Red blood cell count (426..) 3.92 10*12/L [3.8 - 4.9]

Haemoglobin concentration (Xa96v) 120.0 g/L [110.0 - 150.0]

Haematocrit (X76tb) Below range 0.353 l/l [0.36 - 0.46] Below low reference limit

Mean cell volume (42A..) 90.1 fL [80.0 - 101.0]

Mean cell haemoglobin level (XE2pb) 30.6 pg [27.0 - 32.0]

Mean cell haemoglobin concentration (429..) 340 g/L [290.0 - 360.0]

Platelet count - observation (42P..) 347 10*9/L [150.0 - 450.0]

Differential white blood cell count (42I..

Differential white blood cell count (42I..)

Neutrophil count (42J..) 2.8 10*9/L [1.7 - 7.5]

Lymphocyte count (42M..) 2.1 10*9/L [0.9 - 3.2]

Monocyte count - observation (42N..) 0.4 10*9/L [0.2 - 1.0]

Eosinophil count - observation (42K..) 0.1 10*9/L [0.0 - 0.5]

Basophil count (42L..) 0.1 10*9/L [0.0 - 0.1]

B12/folate level (XaIqS)

Serum vitamin B12 level (XE2pf) 161 ng/L [150.0 - 900.0]

Serum folate level (42U5.) 3.9 ug/L [3.1 - 19.9]

Serum ferritin level (XE24r) 70 ng/mL [10.0 - 210.0]

So everything is in range apart from a couple but this was the same with my thyroid for 2 years before I was finally diagnosed. I could barely function by that point and I don't want to get there again!

Sorry posted all results as not sure whats relevant.

Thanks xx

17 Replies
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Hi zoemk6

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) are at an elevated risk of becoming Vitamin B12 B12 deficient.

Both your B12 and Folate levels are at the bottom end of the scale.

Symptoms of B12 deficiency tend to develop slowly and may not be recognised immediately. As the condition worsens, common symptoms include:

Weakness and fatigue

Light-headedness and dizziness

Palpitations and rapid heartbeat

Shortness of breath

A sore tongue that has a red, beefy appearance

Nausea or poor appetite

Weight loss

Diarrhoea

Yellowish tinge to the skin and eyes

If low levels of B12 remain for a long time, the condition also can lead to irreversible damage to nerve cells, which can cause the following symptoms:

Numbness and tingling in the hands and feet

Difficulty walking

Muscle weakness

Irritability

Memory loss

Dementia

Depression

Psychosis

If you are manifesting any of the neurological symptoms your doctor should be treating you in accordance with The British Society for Haematology guidelines which 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".

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

.

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Thank you. Ive been feeling depressed but not sure of thats because i am so tired and feel unwell all the time! Found christmas a real drag and had to be fake happy.

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Sadly I think that because "Christmas" starts in October by the time we get to the "day" itself it all become a bit of an anticlimax instead of a celebration of the birth of Jesus.

Goodnight and God Bless

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Ha ha, this is true! Valentines stuff will be in shops before week is out... and then Easter eggs!

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I think Clivealive's advice is good. Maybe you could print it out and take it with you? Also, it seemed that your Haematocrit was too low to register - which is not normal at all - indicating aneamia. "Haematocrit (X76tb) Below range 0.353 l/l [0.36 - 0.46] Below low reference limit." Can you take a friend with you to the doctor's? Good luck.

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I will print out actually - thanks.

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waiting for a call back from doctors but receptionist has said hes marked my results as normal! I asked if this was taking in to account my symptoms and Hashimoto's but she obviously didnt know the answer! i feel a battle coming on :(

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Retest in 1 year. Wow. That’s too long in my opinion. You need to get your medical records from this dr and find a new one. You have my deepest empathy. I have felt the same way. I hope you feel better soon.

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Thank you. They've previously been really good so I will wait until Ive spoken to them. I know though 1 year - I wont be able to get out of bed for a retest!

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Just spoke with GP and she wont do anything. She said retest in February and if its gone down more she will do IF test. I did ask her to do it now but she said my symptoms wont be from this as its in range. She did prescribe Vit D.

Not sure what to do? Supposed to start training for a marathon next week, have no energy for anything!

If anyone has any ideas id welcome them.

Thanks x

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suggest you write to your GP pointing them at the BCSH guidelines on the diagnosis and treatment of cobalamin and folate disorders which can be found here but your GP can access them through the BNF

onlinelibrary.wiley.com/doi...

in particular draw their attention to the following

a) serum B12 is not a gold standard test and will miss 25% of patients who have B12 deficiency if taken as a single measure

b) macrocytosis (larger rounder red blood cells) is a symptom of B12 deficiency, not a defining characteristic and isn't present in 25% of patients presenting with B12 deficiency

could also be useful to point out that

c) it is possible to be both iron and B12 deficient and the mix of micro and macrocytosis to both be present and to mask each other if looking at full blood count.

d) there is a strong link between hashimotos and autoimmune gastritis - 40% of patients with PA will go on to develop hashimotos and studies give ranges between 10% and 40% for hashi's pateints developing gastritis. Generally the first sign is iron deficiency.

This is an article on thyrogastric syndrome

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

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I’m scared to challenge my GP incase they ask me to find another one! Although they’re clearly not great they are the best in the area!

I did mention the guidelines and she said that they didn’t use those guidelines and ony treated patients who were showing as being deficient.

Thing is I don’t want to get worse before anything happens. To me this seem counter productive.

Should I pay for private testing? Can’t really afford to but can’t really afford not to!

X

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private testing wouldn't solve the problem of your GPs choice only to act on the basis of test results.

You don't necessarily have to 'challenge' them- you are just saying you are concerned that following the test could result in people not being treated properly and these are the guidelines that show why - supported by tested evidence.

You could also try contacting the PAS directly for support but I don't think anyone will be around until after new - year

pernicious-anaemia-society....

pernicious-anaemia-society....

You may also wish to contact your local PALS if you are asked to leave the practice as a result of asking for proper treatment.

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No you’re right. I will write a letter and be polite and present the evidence which is actually there for them to see.

I’ll write the letter tonight and I’ll let you know how I get on!

Thank you.

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Just wanted to thank you your advice. Doctor called me yesterday following the letter and said come in next week for an IF test. She said if that’s positive they will start injection but if it negative and result are same or worse they will refer to a hemotologist. It’s a shame it got to this point but I’m glad to be moving forward xx

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Hi all

Wanted to post an update. Got my Haematology appointment through and it on March 28th!!! Wondering if I should pay and have a private consultation?

I am feeling less tired so maybe it was post flu fatigue but my results are still not great and Im not sure what to do.

If I go private is there anywhere in particular thats good?

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*UPDATE* just thought I would post that tomorrow I am having my first loading dose of B12 and that is mainly due to all the advice i have received via the forum - thank you!

I was referred to a haematologist and she did more tests and agreed I need to have B12 injections.

What to expect I dont know but hoping to just feel more 'normal'!

Should I supplement myself with anything else?

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