Need help :(

[mrsikon]

I first joined the PAS (and the old forum back in 2011) when I was diagnosed with a B12 level of 132. I was given 5 B12 injections over a 10 week period, then my bloods retaken and as my levels had risen to the 400's my injections were stopped.

I do have details of all my blood tests results from back then but they are at home and not with me, I needed to get this post written ASAP, so will update when I can.

What I DO know is since my first pregnancy in 2005, my MCV was always above the reference ranges (I think this indicates macrocytic aneamia?). I have always had low folate and ferratin levels too.

I fought for much of 2012 to try and get more answers as to why I was feeling rubbish, but believed the Dr that being a mum of 4 and holding down two jobs with awful shifts was the reason for my tiredness.

In 2014 we moved to the North East, I was able to get just one full time job, with regular office hours and we now live with my mum so I have help with the children.

My exhaustion is relentless. I struggle to stay awake at work and often have to do a circuit of the office to wake myself up. On holiday I would just drop off to sleep in the afternoons. I don't feel like I've had a decent sleep unless it's been for 10-12 hours.

On top of that, my memory is shocking and it's beginning to seriously affect my work. People just look at me like I'm mad when I tell them I have a bad memory and forget things very quickly.

I had a health check through work, which included a blood test. Again my MCV was high so I booked an appointment with my GP to arrange a blood test.

I absolutely broken down in this meeting with how I am feeling and how it is affecting my life.

As I have a family history of PA (great grandmother and grandmother), she agreed to test my B12 and also my thyroid and FBC.

Had the test Fri morning and a call from the surgery Fri eve to arrange a phone consultation with the Dr tomorrow.

I picked up a copy of my results yesterday and I really need help ahead of the phone call as to where I go next.

You've guessed it, B12 is within "normal ranges" (there are others things that aren't, I will list these in a moment).

Now I know that B12 serum isn't a true reflection of the amount of B12 available for your body to use, how do I convince my Dr to look into this further? What can I request?

Blood test results 2/9/2016

Total white blood count - 8.4 10*9/L (4.0-11.0)

Haemoglobin concentration - 123g/l (115.0 - 165.0)

Platelet Count - 256 10*9L (150.00-400.0)

Red blood cell count - 3.73 10*12/L (3.8-5.8)

Haematocrit - 0.385 1/1 (0.37-0.47)

Mean Cell Volume - 103.2 fL (80.00 - 100.0)

Mean cell haemogblobin level - 33.0 pg (27.0 - 32.0)

Mean Cell haemogblobin concentration - 319 g/L (320.0 - 360.0)

Red blood cell distribution width - 14.6% (11.0-14.8)

Serum TSH level - 1.10 mu/L (0.35 - 5.5)

Serum B12 - 535 ng/l (190.0 - 910.0)

Serum folate level - 2.4 ng/ml (3.3 - 99999.0)

At the top of the print out it says "Follow up action: No further action" on a few pages and on one it says "need to speak to Dr" - which is why I am getting the call tomorrow morning.

I have just ordered Martyn's book, but I need help now. I simply cannot carry on feeling like this, I need to continue fighting this time.

Appreciate any help or advice please.

Thank you

[fbirder]

OK, so it sure looks like you have macrocytic anaemia (not very many blood cells, but they are larger than normal and they don't have a lot of haemaglobin in them). There are many causes of macrocytic anaemia, one of them being low B12, but your levels look OK (I assume you haven't been taking supplements).

However, another cause is low folate - and yours look very low.

The good news is that it's fairly easy to fix low folate in most cases - you just need to eat more of it. It's best to get it from your diet - green leafy veg, peas, beans and lentils etc., fresh fruit and fortified breakfast cereals. Your doctor is fairly sure to blame the problem on your lousy diet (it's one of the things that makes them happy).

You'll probably be prescribed folic acid tablets, anything from 400 to 5000 ug a day. Most people tolerate folic acid very well. After a while the doc should order more tests to make sure that it's working (and that you're taking the pills).

Once things are cleared up you'll probably be told to take folic acid every day forever. Rather than paying for a prescription you may find it cheaper to get it from Tesco.

Good luck.

[mrsikon in reply to fbirder]

Thank you, I am fully prepared for the Dr to blame my diet, which is ridiculous with how healthy I eat.

I will see what she says tomorrow.

[fbirder in reply to mrsikon]

If she agrees that it's not the diet then make sure she agrees to investigate why you have low folate - if that proves to be the problem. Most non-dietary causes are innocuous, but some are nocuous (if that's not a word then it should be).

[clivealive Forum Support in reply to fbirder]

Do you mean knicky knacky nocky noo?

[clivealive Forum Support]

hi mrsikon I'm not a medically trained person but as fbirder says your Folate is very low which might explain why your relatively high B12 is just swimming around and not being processed.

I hope your doctor gets to the bottom of things for you.

[mrsikon in reply to clivealive]

Thank you, I'm guessing take some high dose folic acid and get bloods re-done in a few months to see if there is any change .... I just want to feel better

[mrsikon]

Any idea where the best place is to buy high dosage folic acid, assuming I need the 5mg tablets? Thank you. Google isn't helping and throwing up some expensive options .....

[Fennella02 in reply to mrsikon]

I bought mine from Amazon uk.

[mrsikon in reply to Fennella02]

Thank you, it's looking around £15 for 100, would you say that's right? Just want to make sure I'm getting the right ones.

[Jose651 in reply to mrsikon]

Hi mrsikon,

I just checked and Bio- tech have 100 small easy to swallow tabs.... 5mg for £15.00

That is on Amazon and free P&P when you spend £20.

They will last you for over 3 months so it's good value.

Hope this help and that you get your low Folate levels up.

J 🍀

[mrsikon in reply to Jose651]

Thank you so much. I'm so desperate to get started!

[Jose651 in reply to mrsikon]

I know the feeling too well. You could also eat Spinach and green leafy vegs.

If you order them today they are usually quite quick at posting.

J

[Polaris]

Your B12 at 132 was originally very low mrsikon.

what many GPs consider normal results are not, as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?', a book by Sally Pacholok and Dr J.J. Stuart.

I, personally, would want to know why and would ask for further testing of IF, holotranscobalamin, MMA, especially as you have 40% greater risk with PA in the family, large red blood cells, elevated MCH/MCV and neurological symptoms. Your injections should have been as per BNF guidelines until no further improvement and should never have been stopped (see bottom of page 4 of BMJ research document below under 'how is response to treatment assessed?'

It might be worth writing to your GP, quoting BNF/BCSH guidelines, enclosing the latest BMJ research document, then taking the summary to your next appointment (in case it is not read) as it emphasises the unreliability of tests and how there can still be deficiencies from lack of absorption with your now only slightly higher B12 levels and low folate.

b12deficiency.info/b12-writ...

Page 4'- bcshguidelines.com/4_HAEMAT...

cmim.org/pdf2014/funcion.ph...

Cmim/BMJ document. " Summary:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.

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."

[mrsikon]

So, it's official, my Dr is useless !!!

I was told that my diet in the days before the test could affect the folate result, I asked her to look at EVERY single blood test going back 5 years and she will see it has ALWAYS been low !! (she would also see that I have, gradually, lost a significant amount of weight, you don't manage that with an unhealthy diet!!) She told me that my B12 was fine, agreed, but I had to point out that without the folate being at acceptable levels, my B12 level is irrelevant as I am not able to utilize the B12 in my body.

She also told me I am NOT anaemic .... I pointed out that my elevated MCV (again, this has been elevated for as long as I can remember, around 12 years ago when I fell pregnant with my eldest and started having regular blood tests!) points to Macrocytic anemia, more specifically I think Megaloblastic anemia.

I've suggested I take the high dose folic acid for a few months and return for a further blood test.

I just want to feel better, so really hoping the Folic Acid does the job. I do however have a further trick up my sleeve if it does not.

Thank you for all your advice, I will keep you updated!!!