Limbo

Hi, I've recently been told I'm b12 and folate deficient. I've had my 6 loading dose injections and today visited the haemotologist.

My latest blood results show everything is normal, except my b12 and folate again. However he said at 112 these were within normal levels!!

I feel pants. The numbness/tingling in my arm is returning, spontaneous heart pulpatations are increasing and and can feel the brain fog approaching again.

I read so many different opinions on low levels but his idea that 160 is normal has really left me worried.

He isn't overly concerned and instead is referring me to a sleep clinic, as it may be sleep apnea making me feel the way I do!

Could he be right!

15 Replies

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  • There is never a guarantee that B12 is the only thing going on but I think that you are probably right that it is the B12. 'Normal range' varies depending on units that are being used and what machines are being used to measure. However, it is well established that serum B12 isn't a test that can be interpreted just on figures alone and clinical presentation needs to be taken into account.

    Besides, normal range is being determined by averages and to be honest that covers a lot of ground with most things but the variation with response/retention of B12 is very high compared to most other things which probably explains why just looking at the figures and not at the symptoms is the wrong thing to do

    How long is it since you had the loading shots? Your levels sound really low given that you have had loading shots - implying that you are someone who has a very short retention period of b12 and need more frequent shots/there is something else going on that means that you aren't managing to metabolise the B12 you are receiving properly.

  • I finished my loading does 8 weeks ago.

    My red blood cells are malformed.

  • You definitely need more B12 than you are getting. If you had neurological symptoms then the correct treatment for loading doses would have been every other day until symptoms stopped improving (with review after 3 months).

    Do you know what your folate levels were like

  • Although I felt better after my loading dose, I still had the tingling in my hand and freezing fingers. It's gradually got worse since.

    I don't know what my folate was but due to see the doctor next week so going to ask for a copy of my results.

  • Sleep apnea - have you had any checks for the Thyroid ? Often the very slightest of swelling of the thyroid and therefore pressing on the windpipe can cause this. Caused by inflammation. You will need the following tests - TSH - FT4 - FT3 - Anti-TPO and Anti-Tg. Have you been tested for Pernicious Anaemia ?

    I am not an expert on B12 but have learnt a great deal from others. The website below may help you with additional SHOULD know about etc....

    b12deficiency.info/signs-an...

  • Yes my thyroid came back ok, which is strange as about 8 years ago I was told it was under active! But being someone that struggles to gain weight nothing was done.

    My results for pernicious anemia haven't come back yet but the doc said everything else is ok and I don't have any form of anemia.

    Thanks for the website :)

  • Please do not accept OK from your Doc. You are entitles to have copies of ALL your test results. It is important you know exactly what was tested and where in the range things were. For instance TSH needs to b around 2 - FT4 in the upper quadrant and FT3. It could be you have Hashimotos - in which case you can swing from Hypo to Hyper. Please do read the link I gave you as Docs only seem to understand Iron anaemia when of course there is also Folate and B12 anaemia....

  • Your B12 levels are very low - 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 - a book I would thoroughly recommend.

    With abnormal blood cells and the neurological symptoms you have, you should be treated aggressively according to this extract from the BCSH guidelines to avoid permanent damage:

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

    ukneqas-haematinics.org... :

    “In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord."

    Here are links and an excellent film below, which explain more:

    b12deficiency.info/films

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

    The above BMJ research document is supported by many research papers and has a useful summary if GP won't read the whole document. It also tells GP that, once b12 treatment is started, the test results don't mean anything and blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters....

  • Sorry - this post has come out without paragraphs and won't let me edit !?

    I'll try a message.

  • PS

    As for referring you to sleep clinic for very low B12 of 112 and neurological symptoms, words fail me!

    My sister was misdiagnosed with ME for years (at one time in a wheelchair) and then dementia - referred to ME and memory clinics - she recovered after monthly B12 injections. I believe GPs probably get extra points for these referrals and they can then forget about you so don't be fobbed off.

  • Please believe me ,112 is VERY low..At the level you can get irreversible problems. Also only about 20 % of that is actually available (active) B12. At 150 I had some horrible symptoms, but like you I was sent on my way . I only got a diagnosis by going to a private G.P. and getting a blood test.(P.A.) Yes my red blood cells were enlarged because of the B12 deficiency,so couldn't get through to where they needed to go(hence breathlessness) Numb feet have now turned into just burning feet which is good. But I have to inject myself because my G.P won't tet me have more than one injection every 3 months., which is not enough to keep symptoms at bay. Could have had them privately but couldn't afford that.

    Your exhaustion is not sleep apnea. Try to have the active B12 blood test which isn't perfect ,but an improvement on the serum test. Have you been tested for antibodies to the Intrinsic factor,which can prove P.A.?Do you take ant-acids or a PPI which all deprive you of B12 because Hydrochloric acid is neutralised,which you need to acsorb B12.?

    I take it that you are not vegan or vegetarian, and that you get plenty of folate in fruit and veg??B12 and B9(folate) need eachother to do their job. All the very best and come back here if you nneed to.

  • I assume you told him what you have told us. If you are feeling "pants" (which I'm guessing means "$#!+") and he's not overly concerned then he's not listening. You can fire your doctor you know. He is supposed to work for you. It's like husbands, you can't really find a good one as long as the bad one is in the way.

    You can self inject. You can also take B12 into your body through mucous membranes. It's lovely to get all the B12 you want and/or need. You don't need anyone's permission. You are a big girl now. ;>))

    It is possible that you do suffer from other maladies. But I would take care of the B12 first and foremost, then all the other layers can be addressed.

    My sleep apnea was caused by achlorhydria or lack of stomach acid. I found out by accident. If you find you do have sleep apnea, you can do something about it after you start getting your B12 in place.

    Don't be scared, or mad at the doctor, it's a waste of energy. I gave up on doctors a long time ago. Maybe there are some good ones out there, and maybe you will find one. I hope so, but you will have to save your own life, I'm afraid.

  • Are you in the UK?

    "My results for pernicious anemia haven't come back yet but the doc said everything else is ok and I don't have any form of anemia. "

    It is possible to have PA (Pernicious Anaemia) even if your IFA (Intrinsic Factor Antibody) tests are negative. The test is not always reliable. Martyn Hooper, the chairman of the PAS (Pernicious Anaemia society) tested negative on more than one occasion before testing positive.

    pernicious-anaemia-society....

    b12d.org

    b12awareness.org/

    It is possible to have a form of pernicious anaemia where you don't produce antibodies to intrinsic factor. I think this is known as Antibody Negative Pernicious Anaemia and is mentioned in the "BCSH Cobalamin and Folate Guidelines".

    My understanding of what I have read is that it is possible to have Pernicious Anaemia without signs of anaemia. I think the name is a bit confusing. Some doctors don't realise that it is possible to have B12 deficiency without any signs of macrocytosis (enlarged red blood cells).

    patient.info/doctor/macrocy...

    Useful books

    Pernicious Anaemia; The Forgotten disease by Martyn Hooper

    Living with pernicious Anaemia by Martyn Hooper

  • Yes I'm in the UK. Thank you for the links and comments. I'm hoping to build a case to show my doctor (although he was a lot more understanding than the haemotologist).

    My red blood cells are enlarged

  • I have printed out the complete BCSH Cobalamin and Folate Guidelines and given a copy of it to my GP. Its worthr eading as there are useful quotes pateints could show to Gps

    I also gave him a copy of the following.

    ukneqas-haematinics.org.uk/...

    bmj.com/content/349/bmj.g5226

    The BMJ article has a useful summary.

    These documents and the BCSH Cobalamin guidelines make it clear that symptomatic patients should be treated even if their B12 levels are normal range. I can't believe that 112 is "normal range". Do you know what the normal range for B12 is in your area of the UK?

    If you get a copy of your B12 blood results it should show the reference range. You are entitled to a copy but there may be a charge.You may also find the reference range for B12 for your area if you got to your local NHS website and do a search. I am only aware of one area of the UK that has a B12 reference range set so low that 112 is considered normal. Have you got copies of your latest FBC (Full Blood Count), folate and ferritin. I always get copies after learning from experience that sometimes what you are told over the phone is not always what is on the copies.

    As you are in the UK, why don't you ring the PAS (Pernicious Anaemia Society)

    01656 769467

    If you leave a message they will get back to you. The library section on the PAS website has some useful documents including a symptoms list.

    "numbness/tingling in my arm is returning"

    This suggest you have neuro symptoms. Have you given your Gp a list of all your neuro symptoms?

    b12deficiency.info/signs-an...

    There's a symptoms checklist in the PAS library section.

    The NHS treatment for B12 deficiency with neuro symptoms is more intensive than you have received, the fact that you had 6 loading injections suggests that you are receiving the standard treatment for B12 deficiency without neuro symptoms. The info is in Chapter 9 section 1.2 of the BNF (British national formulary). The BNF is copyrighted but the info in this link is similar.

    patient.info/doctor/pernici...

    Scroll down to "management"

    In the past I asked one GP why I had not received the correct treatment for someone who had B12 deficiency and neuro symptoms.

    Are you on other medications? Some medicines interfere with the uptake of B12.

    b12deficiency.info/what-are...

    There's a comprehensive list in the book "Could It Be B12"

    Have you had any surgery involving nitrous oxide in the past few years? This is in "gas and air" used for pain relief in labour.

    gov.uk/drug-safety-update/n...

    Have you ever been tested for Coeliac disease? It is still possible to have Coeliac disesae with negative results. People with Coeliac disease can have difficulties absorbing vitamins from the gut.

    coeliac.org.uk/coeliac-dise...

    This link has suggestions for writing letters to Gps.

    b12deficiency.info/b12-writ...

    The person who runs the website is sympathetic. Contact details on website.

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