Pernicious Anemia Please Help!

Hi, my name is Jackie and I was diagnosed with pernicious anemia about a month ago. I'm allergic to 98% of medications and vitamins or have severe side effects. I tried the B12 sublingual under the tongue foe almost three weeks until my stomach ripped apart so bad I stopped to see if it was from that vitamin. Apparently yes because that pain stopped and I don't think my body was absorbing it anyway. My brain is so screwed up, I can't stand it. Nauseated, tremors off and on. I wake every night with tingling in the sides of my neck and tightness. Also tingling in feet and legs and shoulders off and on. I'm deathly scared of reacting to the injection but I don't think I have a choice and I would definitely start at a super low dose but of course, my primary Doctor is oblivious and uncooperative. I have a bone Heath Doctor, cardiologist and gastrinologist all in the picture. But life is tough 24/7. Does anyone have a suggestion on how I can get any B12 in my system so I can feel even a little better? I'm now desperate and living hope that I will ever be normal. Thank you!

15 Replies

oldestnewest
  • Hi Jackiekay are you in the U.K.?

    If you have been diagnosed with Pernicious Anaemia then the only way you will get sufficient Vitamin B12 is via injections and these should have been prescribed for you by your doctor.

    You will also need to make sure that your Folate - Vitamin B9 level is also healthy as this is essential to process the B12.

    I'm sorry you are scared of the reaction you may have to the B12 injection but to be brutally honest P.A. is a killer disease and without them you will die.

    Hopefully you won't have a bad reaction to being injected as there is life after P.A.

    Come back here if you have any more questions as although I am not a medically qualified person there are many others on here who will give you good advice.

  • Hi,

    It might be worth joining and speaking to the PAS (Pernicious Anaemia Society). They have members from around the world. They may have info on doctors who are able to treat those who react to certain forms of B12.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Have your doctors checked your folate, ferritin and full blood count (known as complete blood count in USA)?

    More info on B12 Deficiency and PA

    1)

    b12deficiency.info/

    2)

    b12d.org

    3)

    b12awareness.org/ USA website

    4) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS.

    5) Book "Could it Be b12" by Sally Pacholok and JJ. Stuart

    6) See pinned posts on this forum for extra B12 info.

    7) If you are UK based. I'd recommend reading the "BCSH Cobalamin and Folate guidelines"

    ww.b-s-h.org.uk/guidelines/ Click on "Diagnosis of B12 and Folate Deficiency".

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

  • Thank you for your reply. I have read up on P.A. And know about the book. I tried to get it but the major book store doesnt carry it. I will either send for it or download it today. I am from the U.S. And my folate is fine as is my hemoglobin. I am from the U.S. I have had full blood counts more than once. I think my major problem is my body will not absorb B12, so pills are out. I have a scope scheduled in two weeks. I tried to get in today for an injection but again my primary doctors office is being uncooperative. I have researched and found the nasal spray is my next option until.I can get an injection if they decide to do one. My bone health doctor is contacting me on Monday. They dont trust my primary doctor either. Thank you for your help!

  • Hi Jackiekay. Hello and welcome.

    I'm really sorry that you're having such a bad time and that you feel so ill.

    One thing's for sure, as clivealive and sleepybunny say, you certainly need to get some B12 into your body.

    As you have PA your body will be unable to absorb B12 from tablets and it is unlikely that you would be able to get enough B12 from sublinguals. The fact that you also have potential sensitivity to B12 (and possibly to the injections) makes the whole matter even more complicated.

    Sleepybunny is right, the Pernicious Anaemia Society has identified two consultants in London who are able to treat patients who have an allergy or sensitivity to vitamin B12. As I understand it, they work through some sort of de-sensitisation process so that at the end of the process, vitamin B12 injections are well tolerated and the patient can be given the life-saving treatment that they so badly need.

    It looks to me like you might be in the USA? Your primary care doctor (or any doctor) should be trying to help you with this, as a matter of urgency (the longer you are left untreated the greater the risk of potentially irreversible neurological damage).

    Two options:

    Option one: a trial B12 injection under medically controlled conditions so that emergency medical treatment can be given if you suffer a bad reaction (anaphylactic shock) to the B12 injections. If it works....great...injections away. If not...

    Option two: your medic could either email one of the two doctors identified by the PAS to ask advice on how to proceed OR identify and approach an equivalent medical specialist in the USA (I can't for a minute imagine that there wouldn't be one).

    If your primary doctor won't help you, would could perhaps approach your gastroenterologist?

    As you rightly recognise, the main thing is to get some B12 into your body. As clivealive says, with what he calls brutal honesty (and I call vital necessity) - if your body does not get some B12, you will die. I say this not to frighten you (though it is frightening), but rather to give you the strength and determination to push your medic's (any medic) into finding ways to help you so that you body is able to absorb vitamin B12. And something must be found. It's not acceptable for them to simply do nothing.

    It's an unfortunate fact that many medic's do not understand the neurological havoc that B12 deficiency can wreak on the body - and many fail to understand how dangerous it can be if left untreated.

    I really can understand how desperately ill you must feel by now but it's important that you chase your medic's. It would be a really good idea if you could find someone to help you with this since medic's are often more accommodating and less hostile if there is a witness present.

    Also a good idea to read the PAS pinned posts to the right of this page when you log on. Will give you more information about all things pernicious anaemia so that you can make informed approaches to medic's. You may have to teach them a lot so that they can help you. Unfortunately.

    To try and speed things up for you, I'm also going to send you a private message with some additional information.

    Please take care, post again if there's any other ways we can help, and do let us know how you get on. Plenty of people here to help and support you if and when needed 😀

  • Thank you for all the information. My bone health doctor I think is my Saving Grace in this. She and her nurse are behind me 100% it's my primary doctor who I was leaving anyway because of their lack of knowledge, there mistakes in the office and their rudeness to deal with anything. I have a new primary doctor starting December 13th. I am trying every single day of my life to get some B12 into my system. Today I will pick up the nasal spray that I have read that will bypass the stomach and get into the bloodstream. The only thing I can do until I can receive the injections. It may just all be in my head that I will be sensitive to the B12. If all it gives me is a stomach ache which I have had with other pills I have never went into shock with any injection I think it's my untrust for this primary doctor. I will start out at the lowest dose possible and I really do think I will be fine I just need to get the injection but I do not want it for my primary doctor as they are so uninformative about the subject. Thank you for your help and I will keep you informed how everything goes

  • Good luck Jackiekay...be really interested to hear how you get on 👍

  • When I went to purchase the nasal spray it actually was a mouth spray but I thought I would try it anyway. It's from Garden of Life which my bone doctor recommended anyway. This does go right into your bloodstream. Now this may be a coincidence but I only did one spray in the mouth and my fog brain went away. It's only 500 MCG's but I need to start low to see if it causes any reaction. I hope this is my miracle

  • Hey, so so so sorry to hear what you're going through, I too have an unheard of reaction to any type of b-12 being put into my body, my GP didn't actually believe that the b-12 was even capable of causing the type of reaction I was having.

    Starts small with skin irritations and within a week of the daily "catch up" injections, I was covered in skin irritations that looked like a horrible acne breakout, started having swelling in certain areas, (lips, fingers, toes, feet, etc...) until she took me off the injections. After that all of these completely stopped.

    That said, with PA, and my body's inability to properly produce intrinsic factor after my gallbladder removal, I do have to go back on the injections for a week or two around every eight months or so. A short enough time period to keep me from massive side effects, but just long enough to make up for the inability to absorp b-12 through other means. In the meantime though, so that I am getting at least a bit of it, I stay on sublingual 5k b-12 at a rate of 1 in the morning, 1 in the afternoon for a week straight and then I reduce to just 1 in the morning for a week. I still deal with side effects, but it's significantly less than when I have to do the injections.

    A note about the injections though, I fully agree with the earlier suggestion of attempting to be under a medically controlled environment for the first, I've been admitted for mine a few times, your doc should be able to work with you on making that happen, but you must at leSt give them a shot. Personally, I am scared to death of needles, I hate the feeling of injections, all of that, but the occasional round of b12 injections and their side effects is a lot worse than the hospital admissions for gravely low hemoglobin levels.

    Good luck with it all, sending love your way!

  • Thanks for your reply. Its such a struggle. I am curious. I also cannot absorb B12 because I also lack that cell. But I was also told that the sublingual under the tongue still will not get into your bloodstream and is not effective. I am going to buy the nasal spray today. That is the only thing that goes directly into your blood besides the injection. And bypasses the stomach. I'm not scared of the needle itself I'm not scared of the injection I'm just scared of a reaction for some reason probably because of all the reactions I've had to pills in the past. I may be perfectly fine. I'm in a stage right now where are my head is so screwed up and so foggy I feel like I can't even make it through the day. Were you ever that way and when you got the B12 injections did that go away? I have all I can do to not put myself an emergency but I don't think they would do anything anyway

  • Bear in mind this next bit is purely from my personal experience with the varying types of b12 intake, based on my logs that I keep (it's just about the only way I can be sure I'm not forgetting things to be honest, my mind and memory has dramatically been impaired since PA diagnosis), the sublingual in small to moderate amounts, doesn't do a thing for me at all, really. From what I can tell, my body absorbs basically none of it from food and only a moderate amount from sublingual doses, here was my breakdown:

    1k x 1/day-no effect

    1k x 2/day-no effect

    1k x 4/day-small effect, nowhere near injection effect

    2.5k x 2/day-slightly better

    2.5k x 4/day-moderate effect, comparable to injection

    5k x 2/day-same effect as 2.5/4, much easier to remember.

    The key with getting something out of the sublingual doses though is that you have to completely, absolutely keep yourself from swallowing at all until it's fully dissolved. (Depending on brand & additives, I've noticed this can take anywhere from 2 minutes to 20.) If you swallow at all then you're losing any potential for that dose to absorp.

    I, like you, have heard that sublingual doesn't work without IF, and also that it does, truth be told, I don't know what really happens regarding the breakdown of vitamins and minerals when they encounter a body that is missing some components to fully break them down (although this whole ugly affair has set me down the path of becoming a naturopath, if for no other reason than to take care of my own issues with PA & neuropathy and suspected Lyme.), but I do know that I seem to have a better hemoglobin count than when I don't ingest the extra b-12, it just has to be in really massive quantities and each dose needs to be separated by at least 2 hours.

    In regards to the whole foggy thing, I ABSOLUTELY felt that! I've always been fairly good with words and getting my point across, math in my head and all that sort of thing, but several months post-gallbladder removal every bit of that changed. My memory started going, and when I would be in a conversation with my husband he would constantly point out that I was making no sense, (there was actually one conversation in which the only words I could come up with were "I don't know"... like seriously, every thing he would say or ask, that would be all I could respond with.. to the point that he had to start asking me if I was just f*cking with him or something), I also remember vividly sitting and watching something and was struck with the thought that this is what dying feels like, (admittedly the next day I tested at a 2.4 HG so it was probably a pretty accurate thought). I never felt specifically like my body and mind were doing all of the things I'm told they were, but I did recognize them after a transfusion and my first b12 injections. The best comparison I can make is that looking back on all the time leading up to that moment and the PA diagnosis is that it feels like the really bad kind of hangover. The kind that when you wake up, you only remember things through that like "drunk haze", if you remember them at all. I know of at least a dozen conversations I've had with friends and family that I didn't remember at all and still only have their word for what was said in them.

    When I first started the injections, though, my memory started coming back with a vengeance and slowly but surely I started burying the other neuro effects like proper word recollection (took 2-6 months give or take) and being able to write properly (texting ability took 3 or so months to sort of get where I was and another 2 for full on writing/blogging/etc. Neither have returned fully but I believe that's part of the argument for taking action with PA sooner rather than later to avoid permanent issues).

    I was actually in a pretty decent place with it all until I received a peripheral neuropathy diagnosis and started on neurontin for it, the side effects that came with the dose I need to receive a benefit took me right back to full on brain fog. Worse than goldfish memory, I have to write everything down or else I lose it five seconds later. Personally I never recommend it! But that's a whole other story.

    Sorry if I went all information overload with all this, and I hope I answered your questions/concerns at least a little bit, if there are any other specifics I can help with, just let me know!

  • I am so sorry for all that you have went through. I understand about the Neurontin. I had that once in the hospital. Never again. My hemoglobin also has been normal it was between 13 and 14 with yours being that low I can understand how bad you must have felt. I did buy the garden life vegan spray for the mouth today. This may be a coincidence but I only used it once and my brain fog cleared. It's only 500 MCG but that's okay because I need to start out low. I'm hoping this may be my miracle. I will keep you informed, if there's anything I can do to help you let me know. Thank you for all your advice!

  • That's awesome to hear!!! And it actually is super noticeable when you get a decent dose of b12 in there, I recall every day after I'd go in for one I felt more and more like myself bit by bit. Started remembering things more clearly, actually had an appetite (and a pretty voracious one at that!) and felt like doing stuff (nothing crazy of course, but like going to the grocery store didn't elicit absolute dread..lol).

    Anyway, definitely good that you noticed a change!!!!! :-)

  • Thank you! I'm still wondering if it's just a coincidence because I've only had one small spray. We'll find out tomorrow I think I'll do two sprays

  • There are 4 forms of B12 that I am aware of and may be others.

    1) cyanocobalamin (think this is commonly used in USA)

    2) hydroxycobalamin (commonly used in UK)

    3) methylcobalamin

    4) adenosylcobalamin

    Has your doctor discussed the possibility of trying a different form of B12(cobalamin)?

  • No but I will bring it up to my bone health doctor on Monday. I did get the methyl type of spray for your mouth and try and that today hopefully that won't tear my stomach apart like the sublinguals did and I don't think they worked. Hopefully this will work otherwise I'll have to discuss on Monday what we're going to do from here but thank you for the suggestion I will bring it up to her

You may also like...