Advice needed: Hi all, think I could do... - Pernicious Anaemi...

Pernicious Anaemia Society

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Advice needed

Galadriel1 profile image
12 Replies

Hi all, think I could do with someone who knows better than me having a look please....... All advice gratefully recieved.

FBC

Haemoglobin concentration 127 g/L [115.0 - 166.0]

Total white blood count 4.5 10*9/L [3.7 - 11.0]

Platelet count - observation 287 10*9/L [150.0 - 450.0]

Neutrophil count 2.0 10*9/L [1.7 - 7.5]

Lymphocyte count 1.6 10*9/L [1.0 - 4.0]

Monocyte count - observation 0.4 10*9/L [0.2 - 0.8]

Eosinophil count - observation 0.4 10*9/L [0.04 - 0.5]

Basophil count 0.0 10*9/L [0.0 - 0.2]

Red blood cell count 3.98 10*12/L [4.0 - 5.5]

Below low reference limit

Haematocrit 0.390 L/L [0.36 - 0.441]

Mean cell volume 98.0 fl [80.0 - 100.0]

Mean cell haemoglobin level 31.9 pg [26.9 - 32.0]

Mean cell haemoglobin concentration 326 g/L [320.0 - 359.0]

Nucleated red blood cell count 0.0 10*9/L [0.0 - 0.01]

Serum ferritin level 70 ng/mL [20.0 - 204.0]

Serum folate level 18.8 ng/mL [3.1 - 20.5]

THYROID STIMULATING HORM.

Serum TSH level 3.56 mIU/L [0.35 - 4.94]

Comment Euthyroid or adequate replacement.

Rarely, patients with pituitary/hypothalamic

hypothyroidism can have a normal TSH.

Urea and electrolytes

Serum sodium level 144 mmol/L [136.0 - 145.0]

Serum potassium level 4.5 mmol/L [3.5 - 5.1]

Serum urea level 4.0 mmol/L [2.5 - 6.7]

Serum creatinine level 61 umol/L [50.0 - 98.0]

VITAMIN D

Serum vitamin D level 78.7 nmol/L [80.0 - 150.0]

Below low reference limit

Serum calcium level 2.28 mmol/L [2.1 - 2.55]

Serum inorganic phosphate level 1.00 mmol/L [0.8 - 1.5]

Serum albumin level 39 g/L [35.0 - 50.0]

Serum adjusted calcium concentration 2.30 mmol/l [2.1 - 2.55]

Comment from referral Lab. Vitamin C not routinely available. Please contact

Dr. Abraha Biochemistry Consultant.

GFR calculated abbreviated MDRD > 90

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Galadriel1 profile image
Galadriel1
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Sleepybunny profile image
Sleepybunny

Red blood cell count 3.98 10*12/L [4.0 - 5.5]

Below low reference limit

Mean cell volume 98.0 fl [80.0 - 100.0]

Mean cell haemoglobin level 31.9 pg [26.9 - 32.0]

Your MCV and MCH are close to upper limit of range which made me wonder if you might be close to developing macrocytosis.

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

nhs.uk/conditions/Red-blood...

I am not a medic just a person who has spent years trying to get answers.

Galadriel1 profile image
Galadriel1 in reply toSleepybunny

Sleepybunny I had noted the low Red Blood Count but hadn't made the connection to the MCV and MCH being close to the upper limit. I followed the link and had a read and I read this: Refer to a gastro-enterologist .... Urgently if there is a suspicion of gastric cancer (eg, because of co-existing iron deficiency). This is my Iron results ..... IRON STUDIES

Serum iron level 21.8 umol/L [4.4 - 27.9]

Serum transferrin level 2.98 g/L [2.0 - 3.2]

Transferrin saturation index 29 %

Do I presume that is ok?

It's hard to understand all the results.

fbirder profile image
fbirder in reply toGaladriel1

Sleepybunny I had noted the low Red Blood Count but hadn't made the connection to the MCV and MCH being close to the upper limit. I followed the link and had a read and I read this: Refer to a gastro-enterologist .... Urgently if there is a suspicion of gastric cancer (eg, because of co-existing iron deficiency). This is my Iron results ..... IRON STUDIES

If you are deficient in folate and/or B12 then the body can't make DNA quickly enough for rapidly-reproducing cells - like red blood cells (RBCs). When making new RBCs the nucleus can't divide (not enough DNA) so the cells keep growing bigger instead.

That means you don't have enough red cells (low RBC count), they're bigger than normal (high MCV) and, because they're bigger they can contain more haemoglobin than normal RBCs (high MCH). But the values are only just out of range, so I would guess that your B12 treatment is working. It does take a while for the old, large, RBCs to get replaced by nice, new, small ones.

Your iron levels look fine.

If worried about the (very small) possibility of gastric cancer then ask your doctor for a referral to a gastroenterologist. If you do have PA (which sounds possible) then you will probably have gastric atrophy. That can increase the risk of gastric carcinoids - but it increases from a teeny tiny risk to a slightly higher, but still very small risk. And the gastric carcinoids caused by gastric atrophy tend to be indolent little things that just sit around doing nothing.

The PAS ran a study on members with gastric carcinoids (also known as NETs - neuroendocrine tumours). Out of all the respondents only one had them - me!

But, for peace of mind, a gastroscopy will rule out anything nasty.

Galadriel1 profile image
Galadriel1 in reply tofbirder

Thank you fbirder that explains it to me a little better. I remember the talk on the NETS, it was very interesting. I had a serum level of 155 but tested neg for IF antibodies so a bit of a struggle with Dr's but I told them I do have an absorption problem as I eat plenty meat and dairy. Still having issues with them, most recent was to tell me it was in my head and the B12 was working only as a placebo! They treat me as a hypochondriac/addict might be treated, it's daunting to ask for yet another referral..... got the neurologist at last in Jan.

fbirder profile image
fbirder in reply toGaladriel1

Yes, I can empathise. The haematologist I saw started off by saying that I didn't have PA - because I hadn't had an IFAB test. Not that I tested negative, but that I hadn't had the test! When I asked him to explain an alternative explanation for very low B12, positive anti-parietal cell antibodies and gastric atrophy he backed down and admitted that I might have it.

He also told me that my frequent B12 requirement was a placebo effect and that I should stop injections. I told him I was going to treat that advice the same way as I was going to treat everything else he said - ignore it.

Also your D is low. D3 and K2 should fix. B12 query ? B12 supplementation if necessary ? Presumably yr Dr is dealing.

Galadriel1 profile image
Galadriel1 in reply to

Hidden I am on injections from Dr and now Self injecting too. But I tried to lengthen time between to a week but not working, I know I need more. I had a very low Vit D 25 (50-?) back in May and was treated with a high dose for 7 weeks and am now on a maintenance dose of 800ug daily which is obviously not enough as I have fallen below the reference range again. It had only gone up to just inside the reference range when tested in June 60 (50-?) so not surprised really. I also had very low Vit C 4 (25-?) and am taking higher dose than Dr was giving me 1000mg but lab refused to test!

Sleepybunny profile image
Sleepybunny

Hi,

I don't know much about iron studies but here's a link that may have some useful info.

labtestsonline.org.uk/under...

Dr Eric Madrid in his "vitamin D prescription" says D level ideally between 50 to 70 ng/ml for disease prevention; Vit D + Calcium + Phosphorus thru intestines; Calcium + Phosphorus + Magnesium + K + trace through Bone matrix. Appropriate dosages of vit D and K and magnesium and phosphorus should bring your levels up to at least 50. Apparently most people need high doses of D ( with blood level checked every three months ) If you have D deficiency signs ( bone scan, etc ) you should check the PTH level. I am attempting to treat mine.

Galadriel1 profile image
Galadriel1 in reply to

Ok am a bit confused, had very low vit D test of 25 done by Dr who was saying i didn't have PA so looking for something else, I was treated for 7 weeks and they did a blood test after 4 to check my calcium level was not too high I think and then nothing. I had a private haematologist who did a blood test and noticed my severe vit C deficiency level of 4 and wanted to know what maintenance dose of vit D my Dr had me on as level then was only just at 60 bottom of range was 50 so not great. I told him I hadn't been given any maintenance dose and he told me that I should have and it is clear in the guidelines that I should have maintenance dose for life now. I have no understanding of the rest, calcium was within range on test byt K & Phosphorus I know nothing about and what is PTH level? Thank you.

The Parathyroid Hormone regulates calcium in the blood and if it generates too much hormone (various reasons including low vit D) it will suck the calcium out of the bones into the blood which will lead to too much calcium in the blood and BANG. All those vitamins mentioned earlier are essential . You may have to get a proper clinical examination . Suggests you get full print outs of any tests. The blood tests can only be interpreted on the close clinical evaluation of your symptoms. You should perhaps get a copy of Vitamin D Prescription of the internet. Also read the blogs on this site and the assistance offered by the PAS.

Also you can take oral or sublingual supplements in addition to your B12 injecttions. Try them all..

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