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Normal B12 levels but low ferritin.

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amymuck
amymuck

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 smile

0 likes, 6 replies

6 Replies

  • caitlin39841
    caitlin39841 amymuck

    Posted

    hi amy. so sorry to hear your health is so challenging at the moment. day to day living must be very difficult for u with so much going on.

    in respect of the possibility of having low b12 levels: from the symptoms you've outlined and your response to the oral treatment would suggest that there is a problem there.

    the levels rated 'normal' in the UK is very low & many ppl with 'normal' levels are symptomatic but don't get treatment. to compound this, GP's tend to be very under informed in respect of b12 & the debilitating addects in has on ppl's lives. they tend to dismiss ppl eventhough they are symptomatic but within the so called 'normal' levels. why not have a look at the Pernicious Anaemia Society (PAS) website. it's got loads of accessible info. on there that'll help you with getting help from your GP.

    hope the other health problems get sorted soon for u.

    best wishes

    caitlin.

    • amymuck
      amymuck caitlin39841

      Posted

      Hi Caitlin,

      Thank you very much for your reply, I am at wits end with all this, and with having my exams in four weeks and not being able to revise without the supplements is causing some serious challenges. 

      I have been doing more research and I've seen lots of people on here saying that internationally under 500ng/L is considered low rather than the UK's 200ng/L. Apparantley they are also in the process of changing the UK's lower end limit to 500ng/L which would completely help me as on the last two blood tests my reading is over 200ng/L but below 500ng/L (it was 361ng/L).

      I took your advice and looking the symptoms on the PAS website I am more sure than ever that is this is the problem at hand. Reading what they put on their about the brain fog is very interesting. What they've described there, really relates to me but some of it I didn't even realise was a symptom e.g watching tv/reading a book while in the fog, and then forgetting what you watched/read the next day!

      My GP is absolutely useless, half the things that are abnormal on my blood tests are never shared with me. I'm hoping my endocrinologist that I was sent to see might be able to help me further or send me in the right direction. I also wondered if it would help in any way trying to get a referral to see a haemotologist? Because some of my full blood count results suggest anaemia, but then some others suggest the complete opposite.

      Thank your help, I really appreciate it!

      Amy.

  • caitlin39841
    caitlin39841 amymuck

    Posted

    hi amy. very plsd. to hear that you're seeing an Endo., hopefully that'll throw some light on the hormonal blood results & set about correcting any underlying problem/s. s/he should also comment on the b12 levels. however, if not, u could ask for a referral to a haematologist who would be up to speed with b12 requirements. hopefully, the HaemT. will look at the symptoms rather than singurarly focusing on the test results which GP's tend to do. it would also be wise to know what your Folate levels are. if you don't have it ask for a test before seeing the Endo.. b12 and Folate are interdependent. they work hand in hand. if Folate levels are low, b12 won't work properly. b12 also needs high normal levels of iron/ferritin. hopefully your GP is addressing this.

    in respect of anorexia in the past. yes, it may have dropped your b12 that may not have had the opportunity to self-correct in the interm. it just may need some help with supplementation whether injections or otherwise. you can always speak to someone on the PAS helpline. that would help u prepare for & gain optimal benefit from the Endo/HaemT. appoinment/s.

    all good wishes & good luck wiht the exams too.

    Caitlin

    • amymuck
      amymuck caitlin39841

      Posted

      Hi Caitlin,

      My folate levels are within what they consider the normal range but once again on the low side, I also have low levels or ferritin. I was never told this by my gp only recently after looking at my blood test results noticed this. My GP doesn't have the knowledge about b12 defiency to help me I don't think, so I'm just going to have to wait to see what my endocrinologist thinks. 

      I had a chat with the PAS today, and they were very adamant about getting in touch with my GP again and getting the b12 injection or getting the under the tongue spray.

      Thank you so much for your help!.

    • caitlin39841
      caitlin39841 amymuck

      Posted

      hi amy. good to know you've had a chat with the PAS ppl. i guess, the dilemma is, whether to put pressure on your GP for the injections or wait for the Endo. to suggest/instruct him re the need for injections. as u probably know you're in the ''grey'' area in respect of b12 levels i.e. the blood results r considered normal by the GP but you have marked neurological symptoms that should be treated with injections.

      a couple of options worth mulling over might include: 1) make an appointment with GP & explain that the PAS suggested that's it's important that u have b12 injections to prevent long term neurological problems. back this up with mentioning u had a look at the NICE guidelines re b12 treatment and they concur with this. (in the NICE guidelines in pg 6 of the management section they outline the ''grey'' area protocol. just google NICE guidelines re PA.) 2) you could also complete the PAS evaluation questionnaire chart from the PAS website & take it with u to the GP in the hope he'll action it with the injections. and perhaps impress upon him, how important it is that u do well in your exams etc.

      in the interm u could take the oral/sublinguals to help the brain fog whilst you revise for exams. u could supplement with folic acid from the health food store if the GP says no to Folate supplementation. sometimes GP's don't bother actioning low Ferritin if the haemoglobin (HB) is within normal parametres. however for the b12 to work optimally, it's advisable to have both the Ferritn & Folate at the higher end of normal. there's also the problem that the subligual will raise the serum b12 level & if the GP retests before treating u the serum levels will be high, but this is not always reflected in the negation of the symptoms. have a think & see what's possible.

      all good luck.

      Caitlin

  • bluemaran
    bluemaran amymuck

    Posted

    I'd love to see an answer about the low B12./low ferritin.  I too was B12 deficient (maybe for a long time), and monthly B12 jabs are steadily returning these to normal.  I'm also taking ferrous sulphate tablets, and just put myself on folic acid to see if it will help.

    But my ferritin stays stubbornly low.  I get bouts of complete exhaustion and muscle stiffness.  I don't know if this is the cause.  My eyesight has deteriorated markedly, and I have virtually no sense of taste.

    I've been reading "Could it Be B12" which I can thoroughly recommend, but can someone explain the connection between low B12 and low ferritin?

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