Brief history - I was diagnosed with ME/CFS 6 years ago (may or may not be, B12 104 at that time) but in June this year my B12 test showed quote from lab "had trouble finding any at all". I had 5 loading shots, no change for 1st 2 weeks then bit of improvement for 3 weeks then downhill. I now feel worse than before the loading shots but think I need more (thanks for all the replies & great info in response to my previous post. My GP still refuses any further treatment so have found a private GP who will (hopefully) give the injections but wanted to do his own tests first. He retested my B12 & it was 223. I know 8 weeks after loading shots is pointless as it will show high levels regardless of symptoms but how can my B12 still be only 223 after loading shots? Any ideas please?
My folate is 8.5 & ferritin 22 (am trying to improve them).
GP is doing further tests but am hopeful he will give me injections anyway.
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Bev11
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My friend (originally167) has recently been given loading, his three month blood test gave 633 his gp has sanctioned monthly injections but he does have absorbtion issues. As if me/cfs wasnt enough, do you have any other problems? Any drugs which could cause the depletion?
From your original post the gp has had a complete u turn on treating, i wonder if he got his wrist slapped for the costings of nurse giving you injections.
As was mentioned in original post replies it might pay you to 'go it alone' and see if there is a marked difference. Especially if the private dr isnt forthcoming either. Not that imcould see that he would as you are paying him.
Thanks for replying. Nothing else diagnosed but all my symptoms are exhaustion, dizziness, loss of balance, confused, forgetful, headaches which could apply to ME or B12 def. standard answer from GP for last 6 years is 'it's ME, nothing we can do about it', fobbed off until this recent B12 test, so no, no other drugs at all. Dr says he will do more 'investigations', not sure what but he's ringing me tomorrow, seems thorough but don't think very knowledgeable on B12. He says 223 is in normal range but seems really wierd to me that it's so low after shots
Of course your B12 is in trhe 'normal' range - you've been squirting the stuff inside your body at hundreds of time the normal rate. Your doc should realise this.
Demand that they investigate the cause for the low B12. There are a few possibilities - assuming you're not vegan, haven't had bits of your gut removed, don't abuse nitrous oxide and don't take PPIs or metformin then the most likely is an absorption problem. And the most likely cause of an absorption problem is Pernicious Anaemia.
Demand a test for anti-IF (Intrinsic Factor) antibodies.
Thanks fbirder. I just expected it to be much much higher than that after the loading shots despite feeling awful. Am not vegan or any others of the above so no obvious cause. Dr thinks an absorption problem I think & will do'further investigations' but not sure what. Any suggestions what to ask for? I've had IFA test done twice but came back as OK both times. I can ask if he'll test it again though.
BCSH and NICE guidelines in the UK for B12 deficiency with neurological symptoms are 3x weekly loading shots until symptoms stop improving (review at 3 weeks) followed by maintenance shots every 2 months. Even so this may not be enough.
If you have an absorption problem with B12 then you are no longer able to store it in your liver and release it when needed. This means that the B12 stays in your blood until it is either used or filtered out by your kidneys and passes out in your urine. People vary a lot in how long this takes. Studies in the 1960s showed that people retain cyano-cobalamin on average for 1 month and hydroxo on average for twice as long - but there was considerable variation that certainly wouldn't justify saying that hydroxo is only needed half as often as cyano. It is a very individual thing and obviously you are one of those who really doesn't retain B12 for the full 8 weeks. at 223 the chances are that your cells are back to not having enough B12 to do their business. Basically you need more frequent B12 shots than the guidelines suggest is adequate.
Thanks Gambit, really helpful. My previous GP said neurological symptoms due to M.E not B12 def (don't know how he knows that!!!) & refused any further treatment at all, but now I've got new GP I'll take printouts of guidelines & push for more injections. I'm hoping with paying privately that he might be more obliging than NHS!! I don't mind paying so long as I can feel better.
I was a bit confused cos I thought the injections didn't absorb through the gut in the same way, so expected level to be much higher but you explained about the liver store really well thanks. My IFA test has come back normal twice (tho I know it's unreliable). Is there any other test I should ask for to prove why not storing or not absorbing? Or shall I just focus on getting the injections?
I wondered if you had ever had a test for Coeliac disease. It can affect the gut and therefore lead to vitamin deficiencies due to absorption problems.
Stomach acidity? low stomach acid can lead to poor absorption of b12.
Be warned that the symptoms of low stomach acid are very similar to the symptoms of high stomach acid. Some people with low stomach acid get diagnosed with high stomach acid and are put on PPIs which i think can affect B12 levels.
Hi sleepy bunny, sorry for slow reply, feeling terrible at the mo. Yes I've been tested for coeliac, low stomach acid & tapeworm but not H pylori. I'll investigate further but thanks for all the links.
For some of us this is the case. I am also very interested in finding out why and currently haven't got any answers.
For some reason some of us need much more than the guidelines suggest - eg I need 1.5 mg in 1 ml hydroxocobalamin daily - and this is not unprecedented. It seems to be more the case in those of us with long-term CFS/ME diagnoses.
Glad to see someone else say this-re: the M.E./CFS & greater need for the B-12. Have same experience. Anyone have issues with Cobalt toxicity? My M.E./CFS friend with same B12 issues showed high cobalt in blood test- but test done while she was injecting. Seems worrisome since our detox pathways are messed up. Anyone care to comment? I'd appreciate some feedback on that.
Depending on how high the levels were, high cobalt could easily be due to injecting B12. Another possible cause is certain types of hip replacements.
But cobalt is a fairly innocuous metal. The MHRA said, in relation to hip replacements, that a level of 119 nmol/L or lower should be aimed for. That's about 250 times higher than for somebody with a decent level of B12 (500 pmol/L).
I got my P.A. diagnosis in 1972 following a "Schilling" test and I thought they had been discontinued due to the difficulty of sourcing the radioactive element so I was quite amazed having Googled Schilling to find:-
You might like to read my read my response to Carolyn above. some of it may be relevant to you. Blood levels of B12 are a bad guide to adequacy at best and at worst actively mask a problem. There are four types of B12. The most important two are Methycobolamin and Adenosylcobolamin. They have different functions. Adenosyl is used in the mitochondria (the energy producing organells inside every cell in your body. Methyl is converted into Adenosyl as needed. If this process is not working properly you will not be able to produce enough Adenosylcobolamin. This means that energy levels will go down and down as the Krebs cycle (the process where glucose is burnt in the mitochondria to produce energy) will not work properly. In these circumstances the cells will use an emergency fermentation method by burning the glucose to lactic acid. This keeps the cell alive but produces only a tiny fraction of the normal energy.
The ramifications of this are severe. The cells that need most energy are those that produce something (hormones and enzymes). If these are depleted you will get all sorts of weird and not-so-wonderful problems. Giving them a Latin name or a three-letter-acronym and then treating the symptoms will not sort the root cause of the problem. I cannot give you advice but I can tell you what I would do in your shoes. I would get in a supply of 5mg Adenosylcobolamin and a supply of syringes and needles and shoot myself (or get a friendly nurse to do it for me) full of the stuff. 5mg per week until the symptoms go away. It is very non-toxic and you cannot overdose.
Thanks for your reply Johnathan. I've been feeling terrible last few days but managed to get a shot from dr this morn so hopefully my brain will kick back in soon & then will study your reply. Thanks
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