CFS now B12D - what next?

Hi everyone.

I came across this site after trying to find info on my long-term condition.

I will try to be brief! Diagnosed with CFS 11 years ago after struggling with health for years - had to change to a career where I could work about 4 hours a day. Worst spells lasted 3 months. That was until 18 months ago when it all got worse and no remission. Also, tingling in hands and feet, shooting pains and memory noticeably deteriorating.

A year ago I saw a horrible neurologist who seemed to think I was a hypochondriac so I complained and finally got to see a new one over a week ago. A phlebotomist I happen to know said to me "ask to get your B12 checked - they don't do it as standard". I asked, he checked and just yesterday I got a call from my GPs to say that this coming Monday I have to start a series of injections for B12D.

That is all I know but I am raging after finding out about PA online and being ill for so long. All my symptoms match and I have had 3 endoscopies plus video fluoroscopies in the past five years because I have problems swallowing water - which I have read happens with PA and yet no-one out of the multitude of people who have left me on pain-killers for years had ever tested my B12. I also have Vit D deficiency.

What I want to know is, is Vit B12 with all my other symptoms called Pernicious Anemia? Or is it just Vit B12 deficiency.

Does this mean my CFS was misdiagnosed? Apparently my B6 had been tested over the years but not my B12.

I cannot wait to get jagged on Monday, I have been ill for so long and it has been getting so much worse over the past year with the walking and memory problems.

Thanks

DB

29 Replies

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  • It is so sad that you have been left to struggle for so many years. Sadly it happens to so many people - hence forums like this - where there is always someone to offer good advice. Sadly GP's are lacking in their understanding of B12 deficiency and seem to be governed by ranges. The range for B12 is often around 180 - 800 - they do of course vary from lab to lab. So if your result is around 200 they declare you normal . In Japan the range starts at 500.

    b12deficiency.info/signs-an...

    It is important from now on to take control of your own health by asking for all copies of your blood test results with ranges - this is your legal right. I am sure you have already found the site I have linked - so much good information.

    I am wondering what your VitD result was ? Again it needs to be OPTIMAL....your result was possibly in pmol/L - so divide the result by 2.5 - so you can see the dose you require according to the chart in the link below...

    grassrootshealth.net

    VitD is a steroidal pre-hormone and not JUST a vitamin. Again Docs are taking their time to wake up to the importance of good levels of D. Just in range is not good enough. Were you advised to supplement ?

    Testing for anti-bodies is often suggested to see if you have PA - but I have also read that you can have PA without. Have you had your MMA and Homocysteine tested ? How is your Iron - Ferritin - Folate ? Sorry lots of questions :-)

    if you have copies of your results it maybe a good idea to post them so people can advise you a little better.

    I am now concerned you may not have had your thyroid adequately tested - they often do just the TSH and if in range declare you Normal - which sadly is NOT the case. You need more in depth testing. CFS is often linked to low thyroid ( T3 ) which in turn can stress the adrenals and cause all over body pain.

    I not a medical person just someone that has found good health through following the advice of others without a white coat and a stethoscope :-) You can click onto my name and read my profile if you wish !

    PS I have weekly B12 injections :-) Do so hope you soon feel better too....

  • Marz - thank you for all that info - I will check it out with interest. I have received a letter today saying my thyroid is normal. I have been on Vitamin D supplement for 2 years now after low results but they said it is just because where I live does not have a lot of sun!

    My B12 was "slightly reduced at 193" and the neurologist wrote "whilst the B12 level is only slightly reduced it does seem reasonable to replace his B12 given the clinical symptomatology".

    I do mot know what MMA and Homocysteine are - I will ask when I see my GP again.

    Thanks again.

    DB

  • Hi DB. The MMA and Homocysteine are explained in the link I posted about B12 deficiency. Any B12 result under 500 can cause neurological damage....so I am somewhat concerned that a neurologist thought you were only a little low. It can take years for the blood results to reflect the symptoms. Also only about 20% of the B12 in the blood is available to be used at a cellular level where it is needed....so I would consider you extremely low.

    How much D are you taking ? What was your result ? VitD is fat soluble so needs to be taken with good fats.

    Being told your Thyroid is normal also concerns me. Normal is an opinion - and not a result. You really need to know the actual result and the range and what was actually tested. Were the following done ? - TSH - FT4 - FT3 - Anti-TPO - Anti-Tg. Probably just the TSH - which tells you so very little - also it is not a thyroid hormone.

    Sadly the knowledge about B12 and Thyroid that GP's have is sadly lacking. Sorry if I sound as if I am on your case - but after almost 4 years on the Thyroid Forum I am well briefed :-)....also my own journey has been a long and bumpy one !!

    B12 deficiency and thyroid issues can present in similar ways and often reside together. Just want to make sure you get the treatment we all deserve :-)

  • MMA and homocysteine are metabolites that build up in the blood when you are B12 deficient. They need to be processed very quickly to be accurate so are usually only done in hospital. Your neurologist could have ordered them but it is pointless doing this once started on injections, so if you get an improvement in symptoms then treatment should continue because of that according to BCSH guidelines.

  • Thanks Secondchance. I feel as if they have done everything back to front but I am just glad I am at least starting injections :-)

  • PA in the proper sense is an autoimmune condition in which the body produces anti-bodies that attack elements of the delicate mechanism by which most B12 is abosrobed in the ileum, resulting in B12 deficiency. It is the B12 deficiency that results in all the symptoms.

    Other causes include - gastric surgery affecting the ileum, genetic abnormalities affecting the ileum, lowering stomach acid levels as you get older (hence B12D more prevalent amongst the elderly), drug interactions (ironically this includes some drugs used to treat symtoms that are actually caused by B12D

    Confusingly some medics will use the terms PA and B12D interchangeably.

    The name PA (pernicious anaemia) then leads to further mistakes as it tends to be assumed that you have to be anaemic and if you aren't then things aren't bad. UK guidance does little to correct this myth.

    Unfortunately there is quite an overlap with symptoms of other illnesses which also makes it difficult.

    Finally, some people find the B12 treatment regime overly conservative and it just doesn't give them the B12 levels that they need to get better ... and sometimes diagnosis takes so long that some damage has become permanent. I still get a few problems with carpel tunnel, tarsal tunnel and also a bit of degeneracy in the neck but these are better with good amounts of B12 (which for me means 3mg+ per day - mostly taken nasally) and being aware of posture and shifting so nerves aren't constrained is a big help.

    Kust over a year ago - 15 months after I was told my B12 levels were low - and just about the time I managed to figure out that I needed to go it alone and get levels right for me myself - I was looking at reducing my hours but health has improved so muchy since then that I have actually moved to another job and increased my hours slightly so it may be a battle but fingers crossed things will improve.

    Some people find that things actually get a bit worse - certainly in terms of nerve problems - immediately after the shots - as the nerve signals get stronger with the healing and its a bit like having had the radio turned up really loud because signal was poor and suddenly it improves and you get deafened. Others can find that it takes a while before they really start to notice any improvements - I didn't notice anything until about 9 months after my first shot - my 3rd maintenance shot when I got to 4 in the afternoon and realised I was still full of beans. Rashes are also another commone problem - again that tends to get better as the treatment continues and seems to be down to the body starting to heal and getting rid of accumulated gunk.

    CFS is a funny one - haven't quite been able to work out what it is - and seems to me to be a bit like 'depression and anxiety' ie a label for a group of symptoms that can have different causes ... and it is really sad and frustrating that our medical systems get so focused on treating symptoms rather than looking for causes that it is unfortunately very common for the dots not to get joined - but thank goodness for your phlebologist friend.

    One other thing - treatment -n there are two different courses depending on whether or not you have neurological involvement or not - but a lot of GPs just follow the no-neuro treatment without realising. In UK recommended protocol is

    non-neuro: 6 loading shots over 2 weeks, followed by shots every 3 months (leave aside the adequacy of the maintenance regime for now - whole other story)

    neuro: loading shots every other day until symptoms stop improving (practial recommendation to review at 3 weeks - though this may not be adequate but ...) followed by maintenance shots every 2 weeks.

    UK uses hydroxocobalamin - there are other forms - regimes vary eg Germany it would be maintenannce every month regardless of neuro or non-neuro.

  • Thanks Gambit 62 - I have detailed my results so far below. Also re neuro pain, I am on Pregabalin and that has helped a bit.

    I ended up on this page because all my symptoms match PA over the past 20 or more years. I have even photographed my tongue and showed it to a GP who said it was "just geographic tongue and will go away".

    I have struggled breathing - really badly over the past year - the lung specialist said it was nothing!

    I have trouble swallowing - especially water and again they have said it is nothing but "probably stress"!!!!

  • ncbi.nlm.nih.gov/pubmed/212...

    Results of review of studies into interaction between anti-seizure medications and B12 - the pregabalin is listed as something that can lower B12 levels so it may not be helping on that front

  • Thanks Gambit62. I don't like Pregabalin but it is WAY better than Gabapentin which was just awful to be on. - they also have me on co-codamol too which I try to keep to a minimum.

  • GAbapentin is a lot worse thant pregabalin in relation to B12 so definitely the lesser of two evils.

    Possible the seizures could be due to the B12D so migh go if that is treated and may not need them anh more. Hope that is the case for you.

  • I'm on it for pain -relief, not seizures but thanks again Gambit :-)

  • lot of medications are used for multiple purposes and the effects on B12 wil be the same regardless of why it has been prescribed. - though guess you already realised that.

  • Hello!

    Your post really strikes a chord with me!

    When I was in my teens it was suggested I had ME and a few years later, following a spell in hospital to try discover why I felt so bad, I was diagnosed/labelled with CFS. Either way I was told there was no solution: I just had to rest. I have never managed to get any help and any odd symptoms have been dismissed as "part of the ME/CFS or another favourite, "stress"! (I'm only "sressed" because I feel so bad, struggle to exist and am consequentially marginalised by the rest of life that is alive!)

    In Feb 2014 my tongue started blistering so much that my dentist referred me to an oral specialist. Pharmacists and Internet research told me it was most likely B12 deficiency so, armed with that knowledge, I eventually got the hospital to test for it and after a few more months of health "service" dallying, I started treatment! At now nearly 43 I have finally experienced being fairly "normal" (!) & think how much I have suffered unnecessarily!!

    Unfortunately I crashed again only 5 weeks after my loading doses and my local surgery only believed in 12 week boosters. However, with the help, encouragement and understanding I have found on this site I have just managed to secure extra treatment and get them to reconsider their protocols!!

    The nurse who jabbed me yesterday congratulated me on this, saying she had previously worked in a practice which treated symptoms and had been trying to get them to change for years, knowing what a difference it made to the patients!

    It is said that B12 issues are quite rare but then figures show that many people develop symptoms as they get older. I wonder how significant the problem really is, if you take into account all the people like us who are going undiagnosed?

    Good luck everyone! :-)

  • Denise - I relate so much to what you are saying and if these VitaminB12 shots help I will be RAGING as I have been ill for 20 years plus with these symptoms getting progressively worse.

    Like you the only solution for me has been to rest. I had to give up a career I loved 11 years ago and I have not worked in my second career for nearly a year as I have been so ill.

    Thanks for your reply and I wish you better health.

  • "A year ago I saw a horrible neurologist who seemed to think I was a hypochondriac"

    I had this experience years ago so you have my sympathy.

    My advice is to always get paper copies of any blood tests you have. I learnt not to accept being told they were normal over the phone.

    Have a look at the following websites/books.

    pernicious-anaemia-society.org

    b12d.org

    b12deficiency.info

    Could it Be B12 by Sally Pacholok

    Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

    Living with Pernicious Anaemia by Martyn Hooper

    I actually think that B12 deficiency and PA are probably a lot more common than is normally stated and that B12 def. and PA are often misdiagnosed as other conditions eg fibromyalgia, CFS, autism, dementia, depression and many others.

  • Thank you Sleepybunny - I will read these links later - I am so glad I found this page.

    Interestingly, in addition to being diagnosed with CFS, only 4 years ago , rather late in life, I was diagnosed with Asperger's Syndrome (a type of Autism).

  • raphaelkellmanmd.com/specia...

    There are many more links related to the topic....

  • Thanks Marz

  • I'm so glad you've at last been diagnosed by an enlightened phlebotomist and that your GP is treating with injections.

    My vegetarian relative was misdiagnosed with ME for years and the eventual neurological symptoms as dementia (neurological symptoms precede anaemia). It was then a stressful battle to be treated quickly and adequately with injections and this is essential as there is a short window of opportunity before neurological symptoms become irreversible.

    Extract from the BCSH guidelines:

    " The BNF advises that patients presenting with neurological symptoms should receive 1000 ug i.m. on alternate days until there is no further improvement".

    This excellent film explains B12 def. well and why folate supplementation has masked anaemia and made diagnosis more difficult over the years:

    b12deficiency.info/films

    b12deficiency.info/what-to-...

    The latest BMJ research document:

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

    Best wishes for a good outcome DB

  • Thank you Polaris - I will watch the movie - read the links later.

    The dementia part is really worrying me. I have gone from being "as sharp as a tac to as sharp as a tennis ball" over the past decade and I am being sent for Early Onset Dementia testing but apparently I have to wait about 8 months as the waiting list is so long.

    Just as well I am getting the B12 injections or I would have been semile by then!

  • I can't stress how important it is that you get enough B12 in any form you can as quickly as possible to regain your memory - supplement with own injections and Jarrows B12 5000 mcg sublingually or sprays if necessary - good reviews on Amazon for neurological symptoms.

    They wanted to refer my relative to a memory clinic and, because of delays and inadequate injections, memory may now never fully return. I now believe this link explains why they would rather have categorised B12 def. as dementia :

    Extracts from:

    thecommissioningreview.com/...

    "The two areas where each addition to the register is most

    valuable are mental health and dementia care. "

    " Similarly for patients with a diagnosis

    of dementia after 1 April, make sure that they have bloods

    including B12 and folate soon after diagnosis. None of

    these have been confirmed at the time of writing but could

    allow you to get ahead of the game for the coming year with

    relatively little effort."

    They should have tested and treated for B12 def. BEFORE diagnosing dementia !

  • Yes Polaris - I feel that they have done everything the wrong way round. They are also sending me for an MRI scan soon- I guess they should have done that first too.

  • Just remembered another link DB that I wished I'd known about at the time:

    ncbi.nlm.nih.gov/pmc/articl...

    " Laboratory testing should be considered to identify potentially reversible conditions that may mimic dementia. Early identification and aggressive management of such disorders may improve a patient’s thinking and daily function."

  • Thanks Polaris - I might print that off and take it to my GP next time!

  • Thank you so much everyone for your replies - I will follow the links and read again in more detail.

    I would have replied earlier but I am just out of bed at 3.15pm after another marathon sleeping stint!

    Waiting on me to day has just arrived before my first injection on Monday is a letter from my neurologist to my GP copied to me.

    It says " CK level was normal (I don't know what that is). Serum vitamin B12 was slightly reduced at 193 ng/l (normal range 200 to 900). ESR was 5.

    I would suggest intramuscular Hydroxocobalamin 1mg on alternate days for a couple of weeks then 1mg every two to three months . (seems a bit vague to me!) "

    In the past my Vit D was low - he hasn't mentioned vit D because I am now on supplements so he may not have noticed. He also says he is still waiting on "auto-antibodies" - obviously having missed that my ANA results came back below normal last December.

    So although he has missed it I can put together so far, low ANA, low Vit D, and now low B12.

    I don't know what it is like elsewhere but this neurologist, who I only saw 2 weeks ago has given me a follow-up appointment for June 2016 - a year away! NHS in Scotland - not all it's cracked up to be!

    Thanks again on all the replies - I would be interested to hear what some of you have to say on that whilst I go and try to kick-start my day.

  • CK is creatinine kinase

    It sounds like a good idea to start hydroxocobalamin using neurological protocol as recommended by BCSH as above. They say alternate day for min 3 weeks. Good luck!

    I am still waiting for neurology review a year later that was due 6 months ago so Scotland is no different to rest of UK in terms of NHS unfortunately 😢

  • Thanks again to everyone who helped me with replies and links. It has been informative.

    So today I went to the treatment room at my GP's to get my first B12 injection. I have to get 7 injections over 2 weeks. The neurologist had wrote to the GP saying I had then to get them 2 to 3 monthly and guess what ? I have to get them 3 monthly. THe nurse almost bit my head off when I enquired about getting them 2 monthly and then came out with this gem...."I don't know why you are getting them anyway, they won't help you because your reading was 193 which is really quite high".

    I told her to stop talking to me as I was so pissed off!

    After sitting for 10 minutes to make sure I didn't have a reaction, I left and headed straight to the reception to make an appointment to discuss with my GP.

    Also, do any of you know about buying B12 from Spain and self injecting?

    Many thanks and I hope you are all having as good a day as possible.

    DB

  • hi DB. i'm so sorry to hear of ur experience. my sense is, that it's a common experience with ppl diagnosed with ME/CFS. sadly once ppl get the ME/CFS 'label' they are kinda written off in terms of new investigations as everything is put down to this little understood, poorly researched, multi-faceted condition. symptomatic management is all that's on offer.

    i've been diagnosed with ME/CFS for a no. of years now. however, since i commenced b12 treatment as part of a treatment protocol for ME/CFS, my symptoms have improved measurably. in retrospect, i'm convinced that my depleted b12 status caused the immune compromise in the first place and got ME/CFS via this route.

    i should have made the connections myself but sadly i didn't. my mum had PA. i had a history of Helicobacter pylori, been veggie/vegan for most of my life, plus had long term use of omeprazol cos i was on NSAI medications for the joint etc pain/inflammation. however, whilst i should have known better, the experts should have been more circumspect.

    i do hope u now make good headways. however, don't be prepared for over night miracles as it takes some time for b12 stores to be replenished & for repair to occur. this is, generally speaking, an incremental process where long term depletion is concerned.

    all good luck on the journey

    HH

  • Thank you HH

    That gives me hope that you have been helped.

    I finished my loading doses 4 days ago and my doctor has spoken to the rotten nurse - my injections have been updated to 2monthly :-) Also, although I still have tingling and soreness, my legs do not feel so stiff. I am hoping this is a good start.

    I agree with you about being labelled, once you get a diagnosis with CFS. I saw a neurologist last year who just brushed me off with "well its cfs". I complained about her and it was a new neurologist who tested my B12. All those wasted years and another wasted year because she didn't make a good judgement.

    Thing is - I even photographed my tongue once and showed picture to a GP who knew all my other symptoms and they didn't think "pernicious anemia". Unbelievable!

    Continued health to you.

    DB

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