Please Help, totally confused! - Pernicious Anaemi...

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Please Help, totally confused!

Elge
Elge

Hi, I'm new here, thanks for having me. I am a bit, ok a lot confused and wonder if anyone can shed any light on my situation at all.

I recently (5th June) had a Full Blood Count done at my request as I have been feeling more rough than usual, I already have Fibro, M.E and DDD - degenerative disk disease.

The results came back low, if you let me know what figures would help I will get them, there are loads! Saw G.P on 29th June and started on 210mg Ferrous Fumerate 3 x daily, she also sent me for a B12 test on the same day as she couldn't see a logical reason for the Iron to be low.

I have been complaining of tingling in shoulder blade and random patches of pulled muscle type pain in my back and terrible shaky hands. I had an MRI for this which showed no reason for the symptoms.

The B12 results came back as

Serum vitamin B12 level 93 ng/L [180 - 900]

Serum ferritin level 9 ng/ml [15 - 200]

Serum folate level 4 ng/ml [4 - 20]

I'm trying to find out what the suggested course of treatment would be with these figures and I will say what my G.P has decided. Bearing in mind this only came about because I am due to have a hysterectomy next Thursday.

Can't think of anything else at present but please just ask if you need any more details, I have requested a phone call from G.P for tomorrow and I would like to be a bit more clued up than I am currently.

Thank you for your time.

Elinor.

7 Replies
oldestnewest

Your low ferritin should, hopefully, get fixed by the ferrous fumarate. You’ll need to be retested in couple of months.

You also need B12 injections and folic acid pills. This NHS document describes how you should be treated.

hey.nhs.uk/wp/wp-content/up...

clivealive
clivealiveForum Support

Hi Elge as you are due to have an hysterectomy next Thursday it may pay for you to have a word with your Doctor and Anaesthetist before the surgery in case Nitrous Oxide is to be used during the surgery as this will have an adverse effect on B12 levels. (See link below) and you are already deficient.

google.com/url?q=https%3A%2...

I am not a medically trained person but I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

Your B12 is extremely low Elge and, personally, (I'd stress though that I am not a medic), I would question the wisdom of going ahead with surgery that is maybe not urgent (* especially as low B12 can affect the endocrine system so there may be a possibility surgery wouldn't be necessary once B12 is corrected?) without the advice of an expert, who knows the risks connected with B12 this low!

"Nitrous oxide anaesthesia. Nitrous oxide inactivates Vitamin B12 in the body including brain cells. Therefore a B12 deficient patient (or her GP) should alert the surgeon and anaesthetist so that an alternative anaesthetic agent will be used during surgery. "

You could try putting the following in writing to the surgery?

The latest BMJ research document summary below (hopefully GP will probably be able to access and read the full document (behind a paywall).

At the bottom of page 4 ' under 'Parenteral Treatment' :

bmj.com/contents/349/bmj.g5226

"What are the clinical features of vitamin B12 deficiency?

The clinical manifestations of vitamin B12 deficiency (fig 2⇓),3 5-7 9 13 represent the effects of depletion on multiple systems and vary greatly in severity. The clinical manifestations are heterogeneous but can also be different depending on the degree and duration of deficiency.

Mild deficiency manifests as fatigue and anaemia, with indices suggesting B12 deficiency but an absence of neurological features. Moderate deficiency may include an obvious macrocytic anaemia with, for example, glossitis and some mild or subtle neurological features, such as distal sensory impairment. Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features, and risk of cardiomyopathy. However, it is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases treatment should still be given without delay.4 13

"Parenteral treatment

"Data from randomised controlled trials and observational studies for parenteral treatment are lacking; however, the expert consensus for standard treatment in the United Kingdom is to begin parenteral treatment with intramuscular hydroxocobalamin. This bypasses the possibility of the debate about whether the treatment will be adequately taken, absorbed, and metabolised.

Standard initial treatment for patients without neurological involvement is 1000 μg intramuscularly three times a week for two weeks.

If there are neurological symptoms then 1000 μg intramuscularly on alternate days should be continued for up to three weeks or until there is no further improvement.4 25 In irreversible cases, for example, pernicious anaemia, the treatment should be continued for life. "

............

Here are other helpful links:

b12deficiency.info/what-to-...

b12deficiency.info/films/

pernicious-anaemia-society....

Also a link to Dr Joseph Chandy's website - he has been studying vitamin B12 deficiency for 30 years:

b12d.org/sites/default/file...

‘B12 affects every system — nervous, digestive, cardiovascular, *endocrine, ear, nose and throat,’ he says. It should be easy to get all the B12 we need from our diet. It comes from every single animal product — meat, fish and dairy. But two problems can affect this.

‘As we age, the stomach shrinks and produces less of the acid needed for B12 absorption to take place,’

‘Second, those with pernicious anaemia (known as B12 neuropsychiatric syndrome) have an inherited glitch that means their body can’t absorb B12 from the stomach. This can kick in at any age, but is more common as we age.’

My very best wishes for a good outcome Elge.

Great reply Polaris

Thank you all, there is loads of really useful information there. Too much to get my head around really but at least I am more prepared for standing my ground, amazing how much you can learn when you need to! I didn’t hear anything re treatment from gp so I went into surgery to be told that she wanted me to buy otc b12! That was It! Wasn’t until I brought up the NICE guidelines and asked for injections that she offered! Had the first one yesterday. Also asked an immunology test which I will get done today. Her reckoning was that as my b12 had been normal in the past (231 in 2008 and 230 in 2014) that I don’t have any absorption problems!

Thank you all again for your time, very informative.

Hi

Your B12, Ferritin and folate are very low. That is the first thing you need to fix as deficiency of even one of them can make you feel terrible.

You’re taking the Iron tablets which should fix that but there’s urgent need of B12 injections and depending on your doctors knowledge on B12 he will treat you accordingly. Unfortunately most doctors treat you incorrectly when it comes to B12, that’s why most people self inject B12.

You also need to take Folic Acid, most likely 5mg once daily to get your levels up.

If you need advice on B12 treatment you can reply to this and I can explain.

I’m not medically trained but am talking from personal experience with B12 deficiency over the last 2 years.

Had to experiment a lot with B12 injections over the 2 years to sort out correct dosage and solve B12 issues.

It depends on how bad your low B12 symptoms are especially neurological symptoms.

Hope this helps.

No need to feel confused, all will be fine and can be easily fixed. The deficiencies are causing the problems.

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