I've recently been feeling very fatigued, can't take deep breaths I feel like there's something blocking my chest, I've some depression and unexplainable anxiety.
I've always known that B12 deficiency attacks the nervous system and the brain, and so I decided to go back and read "Could It Be B12" again and to my surprise almost all of the symptoms were listed by the author as signs of b12 deficiency. So I decided to get tested and within a week or so, I got the results and they were around 260 pg/ml. So I talked to the physician telling him that according to what I've read I'm deficient and I asked him to put me on methyl B12 injections, but he refused saying that I'm well within the normal range, I kept showing him statements about it on my phone but he refused and I tried another physician but it seems that pretty much all of them think that my levels are normal.
So I'm really out of options, I really don't know what to do, the only thing I've thought about doing is to order myself methyl injections and administer them myself, and I'd really appreciate if you guys can help me with that, I've watched some youtube videos and it seems straight forward and quite doable. Also, are these the right things to get?
The methylcobalamin is 500mcg (0.5mg)...in the UK, the usual dose is 1000mcg (1mg) per injection, so the dose of methylcobalamin is half of a B12 dose that would usually be given here. You could get around this by injecting the lesser amount but increasing the frequency of injections.
The type of cobalamin used here is hydroxocobalamin. The USA and some places in Europe prescribe cyanocobalmin instead. (Cyanocobalamin should not be used by anyone who suffers from Leber's Optic Neuropathy). Some people react badly to methylcobalamin - the other two are tolerated well by most people.
No one type of cobalamin is 'better' than the others (marketing hype will often say that methylcobalamin is better because it's 'natural' - this is not so).
The syringe and needle in your link: the three ml syringe is too large for the small amount you would be injecting (1ml). Better to use a two ml syringe for a 1ml injection) Also - the needle on the syringe is not long enough for an intramuscular (IM) injection. Needle needs to be at least 1” long to reach down to muscle (thigh) - or longer if you have a lot of body fat to get through before reaching muscle (sorry for the fat word 😉).
Your B12 result of 260pg/ml - do you know what the reference range was? These ranges differ according to local machine calibrations etc....there is no one 'standard' range, so it's not possible to accurately assess this without knowning what the reference range is?
And of course (as you probably know), the serum B12 test is not, on it's own, a good measure of B12 status - it's possible to be within the 'normal' reference range and have symptoms of deficiency.
Not sure if you are in the UK but what works best here is to write to a GP including relevant guidelines and research material and make an appeal /argument for having treatment with B12 injections. This goes on your medical file and presents the relevant doctor with information that they are often unaware of...and may convince them to commence treatment (even if this is just as a therapeutic trial - which if successful, should continue).
Sorry but I don't have time to talk this through right now but I'm attaching some links to information that may help you to put together a letter, if this is the route you choose to go down (note the guidelines are U.K. ones but the principles outlined here and in all the information is equally relevant, wherever you are):
onlinelibrary.wiley.com/doi... (BritishStandards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and and Folate Disorders). Including B12 Deficiency / PA Diagnostic Flowchart.
archive.is/hbPHE (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections) - even if B12 levels are within 'normal' limits).
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)
I self inject methylcobalamin and order from UK doctor who will talk you through and assist you with any concerns about self injecting (although you are right it is very straight forward particularly after you have done it a couple of times).
The methylcobalamin comes in either 1mg or 5mg ampoules
Hydro is cheaper and can be ordered online from German pharmacies if you prefer.
Link to uk doctor for methylcobalamin below. She and her team are very nice if you want to give them a ring or have any questions.
I can’t see in the other replies a mention that the first injection must be done by a medical professional due to risk of anaphylactic shock. You can get it done privately if the GP isn’t playing ball and once you know it’s safe for you then move on to self injecting. Good luck!
Hi Dazedone. I was wondering about the reference range as well. Also, any other tests done? Active B12, iron, Instrinic factor and folic acid? Also important is the size of your red blood cells(enlarged is common with b12 malabsorption)
I'm a firm believer that b12 under 300 is deficient. Unfortunately most docs just quickly look to see if lab notes "high or low" and if anywhere what they think is in range. I agree that your first jab should be in a docs office. I may have missed it, but have you been supplementing before the test? That would throw off levels. I hope you can find a doc who will listen, do further testing and get you up set up for injections
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