Normal B12 levels but low ferritin.

[amy15995]

My health has really deteriorated over the last 2 years and I've seen many GP's and consultants and been through a range of possible diagnoses such as PCOS/pituitary tumour.

Two years ago I started suffering with severe headaches, this was when i noticed the start of my health deteriorating, since then I've suffered many symptoms, the one I struggle with most is severe fatigure. I also suffer with shortness of breath after little exertion, dizziness, pale skin, weakness, lack of coordination, unsteadiness, foggy brain, impaired memory, moods swings, weight gain, irregular periods and many more. I also was diagnosed with a benign essential tremor shortly after feeling ill, with no explanation for the cause.

I have had many blood tests over the two years, I suffered with high abnormal LFT's that were never explained. My FSH to LH ratio was 3 to 1 hence why they suggested PCOS but after an ultrasound they ruled that out. My prolactin levels were high, so I was sent for an MRI which then ruled out a pituitary tumour.

My mum then spoke to a friend who coincidently suffers with pernicious anaemia and suggested I take B12 supplements, I followed her advice and I couldn't believe the difference it made, I had so much more energy in me and I was finally able to excercise and complete my work without having to have constant breaks. I hadn't felt so well since before it all started. I wasn't sure if this was down to a placebo effect, but after forgetting to take my supplement for a while my symptoms came rushing back, this happened twice and so I finally decided I needed to speak to my GP and consultant about it.

My GP stated that my previous bloods last year showed a normal level of vitamin B12, but he would send me for a repeat. After being frustrated at this and looking at research I rechecked my old blood results to find that my ferritin levels have been consistently low but never brought to my attention and I also had unsual levels in my FBC some results would be above range and some below, none of them brought to my attention either.

I am so tired of being ill and I'm really looking for the answer, even though my GP was pessimistic about it being a B12 deficiency, he said it was unusual that I had such a positive reaction to the supplement. I also suffered with anorexia when I was 13-16 and I have always wondered if there was a link between that and my illness today. If anybody could help in anyway possible I would be very grateful!

Amy

[Hidden]

Hi,

If you can go off supplementing for minimal 4=7 months and then have the active B12 test, it costs only £18,-, and is a far better indicator of how much B12 is actually available to your body.

To save me time have a look at this post as it has all the relevant information in it should you be interested, see:

healthunlocked.com/pasoc/po...

Kind regards,

Marre.

[Polaris]

Sounds like classic B12 def. symptoms Amy, apart from the weight gain (usually weight loss). Has your thyroid been tested? B12 def. and autoimmune thyroid disease are often interlinked and symptoms overlap. Anorexia would not have helped your store of B12, as this is especially important to build up when young. The bar for test results has been set too low in this country and many other European countries, as well as Japan, treat under 500 pg/ml, "because deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml". From the book "Could it be B12?".

BCSH, NICE and UKNEQAS all have guidelines on treating B12 def. neurological symptoms, which you already have, without delay to avoid permanent and irreversible damage.

You could write or email the latest BMJ research document to the surgery, (link given below) which gives up to date guidance on treatment.

This site also has advice on writing to your doctor|:

b12deficiency.info/signs-an...

It might be worth taking someone with you next time, together with the summary (in case they have not read the complete document), to underline the seriousness of delaying treatment, especially as you'd noticed an improvement when supplementing.

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."

"If there are neurological disturbances, then treatment should be expedited and started without delay - 1,000 u.g. i.m. on alternate days. This should be continued for up to three weeks or until there are no further improvements. In irreversible cases, e.g. P.A., the treatment should be continued for life.

I hope this will help.

[Galixie]

I find this interesting: "suggested PCOS but after an ultrasound they ruled that out"

I had an ultrasound technician once explain to me that PCOS is not diagnosable by an ultrasound alone. The fact that you had abnormal hormone levels is important and PCOS can present without any ovarian cysts. Of course PCOS is such a wide catch-all for otherwise undiagnosed fertility problems that it may be a moot point.

Based on your symptoms returning when you forget to take it, it does sound like you need B12. It's great that you were seeing a benefit from the form you were using (I'm assuming tablets?). If those work for you, you may be able to just keep up that regime (and possibly avoid the headache of trying to get injections from your GP).

If your serum iron level was within range, but your ferritin was low, you could try boosting your ferritin with over the counter iron supplements. If both your ferritin and your serum iron were low, you should point that out to your GP.

Sometimes people develop B12 deficiency and iron deficiency at the same time. It can make interpreting blood test results difficult. It's possible that your doctor just overlooked something because he wasn't thinking of how combined macrocytic and microcytic anemias can give false normal results.

[amy15995]

Thank you everyone for your replies. Polaris I am currently in the process of writing to my GP and I have had a call from the PAS who said I need to do it urgently because I am already showing signs of neurological symptoms.

Galixie - I was told this many times about PCOS, because it is a syndrome if you have 2/3 of the symptoms it can mean you have PCOS however the only symptom I had was the hormonal imbalance and I felt my consultant and GP were trying to use it just to get me to leave them alone, now being on the pill my periods have become regular again, still waiting on hormone blood test results. Yet my symptoms seem to relate much more to B12 deficiency than PCOS especially with the help from the supplements.

I have been told by the Pernicious Anaemia Society that the serum b12 test cannot be used in the UK to rule out b12 deficiency anymore because with it being in the "grey" level in the NICE guidelines I could still be deficient. I have also been told that the serum b12 test picks up both active as well as inactive forms of the b12 so I may have "enough" b12 but a lot of it may be inactive. Which also seems likely as apparantly that's why my ferritin is low. Also looking back on my blood results my folate is always on the low side of normal. Me and my mum have done so much research that we are now prepared with another appt with my GP/consultant to finally get the help I need.

Thank you all for your help, I really appreciate it!

Amy