I'm new here

Hi all

I've been following this group for the past month and have gained some great information. This is my very long story of which has mostly happened during the last 6 months. I was diagnosed with pernicious anaemia in December 2015 following 2 blood test showing low results. I had the standard 6 loading doses and am now on a 3 monthly regime. My intrinsic factor has never been tested. I am also deficient in vitamin D and have been prescribed high does of fultium which I have taken for the last 3 months with only a slight change in the bloodresult. Hence am repeating the high dose treatment for the next 3 months. I also have hypothyroidism (since 2003' but had to FIGHT to get this diagnosed) and take levothyroxine, however this has recently been reduced.  I have osteoarthritis in my neck and both shoulders, and following an MRI to check my pituitary gland, I've been told I have a 6mm cerebral aneurysm.   My overall symptoms are debilitating fatigue, muscle weakness, breathlessness, severe  headaches and migraines, aching lower back, hips, knees and feet and have become very clumsy.  These symptoms are only getting worse. My GP is very supportive and I have been signed off work for the past 6 months. I am seeing an Endo who seems to be running a battery of tests, all of which are coming back normal. I'm only 42 so am a little bit fed up😢. I suppose my question to you all is whether these symptoms are part of Pernicious Anaemia or something else? Any thoughts would be greatful received, thanks! 

9 Replies

  • I would say yes they could possibly be connected as the symptoms are the same. But you do have a lot of other things going on as well.

    How did you feel whilst loading? Was there any improvement? This will possibly give you some indicator as to the b12 connection.

  • Thanks for your response, I did feel about 50% better, however it wasn't the miracle cure I was hoping for!

  • The symptoms do sound like B12 deficiency (which is what causes the symptoms of PA).  However, there is a lot of overlap between symptoms of B12D and other conditions - including thyroid problems.

    One possibility is a functional B12 deficiency

    see my response in this post for more explanation.


    It is possible to test for the antibody that is involved in the auto-immune response that leads to functional deficiency but I'm not sure how expensive the test is, what it is called and whether it would be available on the NHS.

    There are a number of conditions that can cause a B12 absorption problem - PA is one though the tests - like IFA are prone to inaccuracy - and the treatment is the same whatever the cause but there could be more than one thing going on so here's hoping that the tests done by the haemo throw up the possible causes.  

  • Why was your Levo/T4 reduced ?  I am guessing because your TSH was low.  You are only over medicated if the FT3 is over range as well - which I am suspecting was not tested.

    Do you have thyroid anti-bodies ?  I am only asking as Hashimotos can cause many problems and some of the symptoms you describe.  Have you had your Ferritin and Folate tested as well ?   You may need to add some T3 into the mix.

    What dose of VitD did they give you that required further loading doses ?


    It is quite possible that having your injections 3 monthly is not sufficient for you.  Maybe monthly ?

  • Thanks for your reply. Last bloods were TSH 0.08, FT4 17.9 and FT3 4.2.  My bloods test were never really that abnormal but I managed to find a specialist who went on symptoms.  In response to the vitamin D dose, I have been and still am taking 4000iu per day. 

  • It may still be worth having thyroid anti-bodies tested - Anti-TPO and Anti-Tg.  I was diagnosed with Hashimotos with an in range TSH - FT4 and FT3 - but the anti-bodies were high.  It can explain a great deal and it is also the most common of thyroid issues.  As you have PA - it is known that auto-immune issues can come along together.

    I do think you need your injections more regularly than 3-monthly.  Hope you soon feel better ......

  • Hi,

    Links to B12 deficiency Symptoms


    pernicious-anaemia-society.... see Symptoms checklist

    Have you ever been tested for Coeliac disease? It's possible to have Coeliac disease even if Coeliac blood test is negative.


    Some people find it helpful to talk to the PAS. Lifetime membership costs £20.

    pernicious-anaemia-society.... 01656 769 717

    Have you read...

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

    "Could it be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart

    "I had the standard 6 loading doses and am now on a 3 monthly regime"

    Neurological Symptoms

    The recommended UK treatment for someone with B12 deficiency with neurological symptoms is loading doses every 2 days for as long as the person's symptoms continue to get better then injections every 2 months. 6 loading doses over 2 weeks then injections every 3 months is the standard UK treatment for B12 deficiency without neurological symptoms.

    My understanding is that clumsiness, weakness in limbs and migraine are often considered to be neurological. Do you have tinnitus, tingling, pins and needles, numbness? Do you bump into things? Is your balance poor especially when your eyes are closed or it's dark? Were you ever referred to a haematologist or neurologist?

    Details of UK treatment can be found in

    1) BNF ( British national formulary) Chapter 9 Section 1.2


    2) "BCSH Cobalamin and Folate guidelines". I read the whole BCSH document and gave a copy to my GP along with a copy of Martyn hooper's latest book.

    3) This link contains similar info in Management section to BNF


    I am not a medic just a person who has struggled to get a diagnosis.

  • Thank you all so much x

  • Fbirder has a useful summary of mainly UK B12 documents/articles. If you pm him I'm sure he'll send you the link.

    I found it useful to find out which guidelines my local NHS were using for B12 deficiency. Local NHS guidelines can differ from advice in BNF and BCSH Cobalamin and Folate Guidelines. They might be found by an internet serach, a search on local NHS website, a FOI (Freedom of Information) request to local NHS website. MPs can also be useful in getting answers.

    I was told that the NHS should be following the BCSH Cobalamin Guidelines. if you are in England, your CCG (Clinical Commisioning Group) might be able to tell you if your area is following the BCSH Cobalamin guidelines.


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