Is it Pernicious Anaemia or not. - Pernicious Anaemi...

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Is it Pernicious Anaemia or not.

Cherrieagn profile image
13 Replies

Hello, my first post here. I hope you will be able to help me somehow, as my GP said there is no need to come back to the surgery as NHS cannot do anything more for me:-(. My problem is constant fatigue, lack of energy and some strange weakness/pain in my muscles (mostly arms and legs). Sometimes I cannot hold a cup of tea, or brush my teeth without any brake.

I have alo Hashimoto & depression for the last 7 yrs, both under control at the moment. I have been tested for B12 in November ( my result was 144), IF negative.

All other blood results were normal, except red blood cells- they are slightly too high (?).

I have received five b12 shots about 6 wks ago. The problem is I haven’t noticed any improvement then or now. My GP says I am not anaemic anymore ( tested my b12 two wks after treatment and b12 was over 2500) and he says it’s all in my head and doesn’t want to see my again about those symptoms. But I cannot work, cannot live like that. I have already reduced my working hours to two hours a day!

The big question is: could it be still b12 deficiency? Or maybe fibromyalgia or something not quite right with the thyroid?

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Cherrieagn
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13 Replies
JMN2017 profile image
JMN2017

Hi Cherrieagn

Could you post your blood results so we can see what your situation is? We need to see the range and the units too. If you don't have the results, you should be able to ask the receptionist for a printed copy although there may be a small charge. Have you also had Folate, Ferritin and Vit D checked? Could you also include any test results re Thyroid function too?

We are all (in UK) entitled to any test results, including bloods. What the GP calls 'normal' isn't always what is really 'normal', or 'with range'. It's also very much about where on the range which may indicate something that needs further investigation ;)

clivealive profile image
clivealiveForum Support

Was your Folate level tested?

Gambit62 profile image
Gambit62Administrator

okay, so your GP is just that - a generalist - who knows very little about B12 and probably about the same about hypothyroidism.

Do you have the range for the B12 test?

Do you have any pins and needles/numbness that goes with the muscle weakness - really sounds as if you have neurological symptoms in which case the correct treatment would be loading doses 3x weekly until symptoms stop improving - with a review at 3 weeks - but if you haven't noticed a difference then that would seem to be the 3 week review.

B12 is used by several processes in the body - which includes the processes that make red blood cells, the processes that release energy in your muscles, the processes that recycle neurotransmitters and the processes that maintain the insulating layer around nerve cells - different processes take different lengths of time to recur.

IFA being negative is a long way from proving that you don't have PA as it gives false negatives 40-60% of the time depending on the exact test method. Serum B12 is a problematic test at the best of the time but is even worse after loading shots as normal range really doesn't apply any more.

It would be helpful if you had a full copy of blood tests - and it is possible that hashimotos may not be adequately controlled as well so would be good to post those results on the TUK forum.

Cherrieagn profile image
Cherrieagn in reply toGambit62

Thank you Gambit62!

If b12 is used to make red blood cells...how could you explain my high red blood count before b12 treatment? It doesn’t make any sense.

I would like to know if it’s still possible to be b12 deficient after b12 shots (b12 level over 2500 2 wks after last shot)? If yes, how could it be explained?

Gambit62 profile image
Gambit62Administrator in reply toCherrieagn

Without seeing the exact results its difficult to comment on what 'high red blood cell count' actually means. B12 deficiency will cause red blood cells to be larger and rounder than normal - as will folate deficiency.

2500 2 weeks after you last shot doesn't mean anything - except that you had a shot and your kidneys have removed quite a bit of it. The reading would have been off the measurable scale just after the reading.

It is possible to have lots of B12 in your blood but for very little of it to be getting through to your cells which is where it is used so serum B12 isn't a good test at this point.

Cherrieagn profile image
Cherrieagn in reply toGambit62

Gambit62, regarding my high blood count...

I have posted my blood results earlier (see the post)

Gambit62 profile image
Gambit62Administrator in reply toCherrieagn

the most likely explanation for a mildly elevated RBC is mild dehydration

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

this article gives some more information on why RBC will be done and how it might be used.

Cherrieagn profile image
Cherrieagn

Thanks for your all replies! Yes, I have some blood test results from December:

TSH 0.13 (low) (0.3-4.2)

ft4 19.5 (10.6-23.2)

TPO 17

IFA 1.6U/ml (0-5.9)

Haemoglobin 34 mmol/mol

Haemoglobin estimation 148g/l

Cholesterol 6.7 mmol/l (2.8-5) — high for the last 7 yrs

Basophil count 0.01 low (0.02-0.1)

White cell count 5.5 (4-10)

Red blood count 5.07 high (3.8-4.8) in March 2017 was high too : 4.9

Platelet 210 (150-400)

MCV 86 (78-104)

MCHC 338

MCH 29.2

October 2017

Rheumatoid factor <10

Serum folate 4 ug/l (3.9-26.8)

Vit b12 144ng/l low

Ferritin 45 (13-150)

Iron 14.4 umol/l

Sorry, don’t have all references. Yes, I can see now that my folate is slightly low.

What can I do to improve my health?

P.s. I don’t have any needles/numbness in my arms or legs. It’s a weakness rather - all seams to be too heavy for my muscles. So I guess it’s not neurological symptom.

Jotk9 profile image
Jotk9 in reply toCherrieagn

Use terminalia arjuna for high cholesterol and vitamin c.

Gambit62 profile image
Gambit62Administrator in reply toCherrieagn

Cherrieagn, could you add the ranges for everything - different labs use different tests so the ranges are useful.

Have you posted the thyroid measures on TUK? You really need to know what your T3 levels are like.

Sleepybunny profile image
Sleepybunny

Hi,

I hope you find the answers you need. I've assumed you're in UK.

IFA 1.6U/ml (0-5.9)

It is possible to have PA even if IFA (Intrinsic Factor Antibody) test has a negative or normal range result.

See this flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA. Cobalamin is the scientific name for B12.

stichtingb12tekort.nl/weten...

Other UK B12 documents

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

UK B12 websites

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

B12 Deficiency Info

b12deficiency.info/

B12d.org

b12d.org/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

I've written a detailed reply on this recent thread that may have info that is of use to you.

healthunlocked.com/pasoc/po...

Lots of b12 info in pinned posts on this forum.

I am not medically trained.

Bluedragon profile image
Bluedragon

High cholesterol used to be one of the markers for hypothyroidism before blood tests. Your body needs it somewhere I suggest. As Gambit has said, you really, really need your FT3 tested and the other antibodies - TGAb. What do you take for the Hashimotos and did you take it morning of your test?

Again, as stated, measuring your B12 serum after the loading injections is a waste of time - and they are told not to! They should be continued on until no further gain is seen.

Your folate is too low. do you know what your vitamin D is?

I keep an eye on both my Hashimotos and B12 d by using medichecks every few months. worth it. Be prepared to do lots of research and know more than nay of your doctors and be ready to push for what you need!

Cherrieagn profile image
Cherrieagn

Thank you! I know it’s very difficult or even impossible, but I would like to know if it’s Hashimoto or b12 deficiency or maybe fibromyalgia or lupus etc.

There is also one thing that drives me crazy: an recurrent itch in the same place (on my leg) for years! It comes and goes, there is no rash, no dry skin and it is always exactly in the same place. Never asked GP, as it is too silly. Any idea what could it be?

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