So this is a long story, but I've been looking in here for a few years and you all seem so kind and supportive and knowledgeable, and I'm hoping you'll have good advice.
I'm in my early 30s and have had trouble with depression and anxiety since I was 12 or so. Tried just about all of the usual medications, plus some of the more unusual ones, as well as years of therapy on and off. About four years ago, I started getting numbness and tingling in my hands and feet, terrible memory and balance, problems with finding words or following conversations, horrible fatigue. After a year, my husband insisted I get it checked out, and my PCP initially put it down to the psych issues, but agreed to run some blood tests after I really insisted that it seemed very different from what I'd come to expect from the psych problems. Low and behold, my B12 was around 180, and I'm told I need to start the loading dose asap and stay on the shots for life.
I kept up with them for a few months, and the anxiety and depression and everything ebut else got much better, then got off track as I went through a layoff and started a new job. Symptoms returned but worse, and I finally got myself in for a few months to get the dang shots. I guess my doctor was concerned about me remaining compliant, so she ordered everything for me to do the shots myself at home. But because my symptoms had gotten so bad, she was also concerned that all this wasn't B12, and sent me for an MRI and neuro consult to rule out MS. That turned out fine, thank goodness, but then I was sent off on the specialist merry-go-round, since, according to my PCP, a B12 issue shouldn't be causing all these problems. Somewhere in the midst of this, I called up for a renewal of the B12 prescription and was told I didn't need it any more because my levels were normal. Of course things got much worse from there, and I ended up back in the office and being asked "Who told you that? You shouldn't have been told that. You're on this for life. Let's do another loading schedule because your level is in the toilet again."
Long story short, none of the specialists found anything, and all of it was put down to stress/anxiety/depression, because of course my B12 levels were normal again and B12 shouldn't have been causing it all to begin with. I saw a therapist for a few months without much improvement, then a psychiatrist, but stopped when I realized that they'd also put it down as psychosomatic without looking at my medical records or speaking to my PCP--and after a particularly frustrating appointment when I called this to the psychiatrist's attention and she asked me why I was "getting so pissy." I left my PCP a few months later after discovering she'd lied to me about receiving some test results and that an MRI disc that she asked me to provide had sat on someone's desk for eight months before being returned to me with the explanation "We don't accept out-of-network discs. We don't have a way of adding them to patients' files."
I thought getting a new PCP would give me a fresh start, and she's been very accomodating with prescribing Xanax and Welbutrin to help me through a recent stressful period. But my B12 prescription is up for renewal now, and she's saying she won't do it. She outright said that whatever neurological symptoms I'm having are a psych issue and I should go back to therapy. Despite the diagnosis my previous PCP gave me, and the fact that my MCV has been over 100 for years and the numbness and tingling haven't ever gone away. She kept offering to run another blood test to prove to me that everything is fine, and seemed annoyed when I pointed out that it would of course normal since I did the last injection only two weeks ago.
So I have a prescriptions for three month's worth of Xanax and Welbutrin, a referral to a hemotologist who will "reassure me that everything is fine," and a prescription for another month of B12 to get me through until the hemotologist "reassures" me.
I honestly don't know what to do. I'm in the US, so I could leave her and find another PCP, but I'm concerned that having psych issues all over my chart will make it appear as if I'm doctor shopping and have very serious psychosomatic problems and that I'll get the same treatment anywhere I go. My husband says I should just order the B12 online and ignore my doctor; my mom says I should either call my previous PCP and see if she can set this new person straight or try to get this hemotologist to back me up.
I tried to show the new PCP a print out from the CDC website that very clearly states that a B12 deficiency that isn't attributable to dietary causes ought to be treated with lifelong injections, but she said she didn't need to see it. I asked for it to be entered into my file anyway, so now I'm wondering whether it would be a good idea, if she discontinues the shots, to ask her very bluntly "So you'd like to deviate from the standard of care? Because you think this is a psych issue? Without performing any psych tests or having the results of a psych consult? Or speaking with the person who diagnosed the defiency?" (In the US at least, "standard of care" is a key term for malpractice suits; if she's going to start down this path, she needs to know she'll be looking at a suit if I end up drooling in a wheelchair.)
It's so crazy that I can get all the Xanax I want just by saying "I'm having a lot of stress," but can't get a dang vitamin when I have a documented history of deficiency!
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Lee_A
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B12 deficiency causes neurological (nerve) damage. If left untreated for 6 months or longer this damage can be permanent.
It cannot simply be rectified by getting your blood levels back to normal.
Try to think of it this way:
You don't water a plant and it starts to wilt.
You give it water and it comes back to life.
Well that's what happens IF you get ENOUGH B12 in time.
of course, then you have this scenario:
You don't give a plant water and it starts to wilt
You wonder what is wrong with it and it gets worse
The plant then dies.
Then you realise it needs water and give it some
It does not come back to life because it is dead.
Plants, like humans, are made up of cells. Once those cells are dead then there is no reversing the issue.
B12 is necessary for all cells in the body. If they don't get enough nerve cells die off. That's why 6% of patients have remaining neurological injury after suffering an untreated B12 deficiency.
Your doctors obviously aren't aware of the above. They think B12 deficiency is a simple blood condition.
It isn't.
My guess is that someone will be along shortly with the link to the BMJ article. You need to read it, understand it, print it off and send a copy to all the doctors you have seen. Preferably with this note on top:
B12 deficiency isn't simple. You are.
Edited because I got time to hunt.
Go to this thread. Go to the 2nd post down (not the 1st) and click on the link. This takes you to a full PDF. It is a clinical review published in the BMJ September last year.
This tells your doctors just how wrong they are being.
If you want to go down the standard of care route, you aren't going to find better evidence than this.
* Vitamin B12 deficiency is a common but serious condition
* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.
* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."
* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.
* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.
Severe deficiency shows evidence of bone marrow suppression, clear evidence of neurological features and risk of cardiomyopathy.
It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay."
Sorry you are having so much trouble. The first thing that jumped out at me was that your diagnosis of B12 deficiency was not diet related. Was the blood test result for B12 level and MCV only?
My B12 def is hereditary and I was positive to antibodies of Parietal cells and Intrinsic Factor. My 10 siblings were tested and 7 of us have the antibodies.
Have you been tested for these antibodies? If you are positive then there is no need for re-testing. The only treatment is B12 injections for life. Never stop them.
The risk of permanent nerve damage is too great. A neurologist is the doc you might consider seeing. A haematologist will check the blood but can't really help with the neuropathy you are suffering. In fact none of them can really help. Only regular, constant B12 shots can reverse the damage (hopefully) and keep it at a good level to avoid further damage. Good luck with your treatment. Don't be afraid to argue your case.
I agree with your husband, re:"My husband says I should just order the B12 online ". Its not worth your health waioting for the medics you have seen to catch up on your stop start treatment of B12. It will not do you good. Get B12 and treat for life, see how you go, ideally have some monitoring of bloods, as other def can develop such as folate def and iron. Also thyroid problems are common with PA etc, so some monitoring would be wise. Marre.
Definitely cause for a primal scream! So frustrating and so frightening how ignorant most of the medical profession can be when it comes to B12.
You can't overdose on B12 though I think there are a few concerns about the implications of the cyano- in cyanocobalamin if that is what you are being treated with.
do you know what your folate levels have been like? - they may need boosting as body needs folate to process B12 and two are used together for some key processes.
I'd definitely go with your husband on ordering on line if you can.
I treat myself mainly because GP in UK just wanted to throw ADs at me. I suffered decades of depression and anxiety and although treating myself was about energy and balance it actually came as a shock to realise that the anxiety was a lot less and depression had gone as I really had dismissed the idea that the later could possibly have been connected to B12. I find a nasal spray works well for me ... may be it gets to the brain quicker :), though I do also self-inject at times.
If you are active and stressed you use B12 quicker and the amount that people need does seem to vary quite a lot.
You might also want to look at different formats of B12 - lots of people find that methyl- works best for them with neurological symptoms. Certainly helps me with having feeling in my feet (which was my main balance problem) ... but I also find that hydroxo- works best for me with the psychiatric symptoms so use a mixture of the two. Only good thing about B12D is that you can't overdose on B12 so you do at least have room to experiment and find out the doses that are right for you. My main problem is actually managing to balance my other B vitamins (B9 and B6 or I get really awful migraines!).
Hi Lee A, So sorry to hear you are having all these problems with your doctor, I do hope what everyone else has told you will be helpful. All I would stress is the need for other vitamins in order for the B12 to be used by the body, as Gambit has said, they need to be balanced. Get a really good multivitamin and check that you are getting all the other B vitamins, plus VitD. I thought Poppet's analogy of the unwatered plant was really good. We do feel as though we are banging our heads on a brick wall trying to get Doctors to understand! Good luck with it all. MariLiz
I'm so sorry you have had such a terrible time Lee. My relative had a severe psychological crisis after a dental injection inactivated her B12', which was already very low, and was then misdiagnosed with Altzheimer's and ME and referred to a psychiatrist ! She is making a good recovery after finally given B12 injections.
It is not generally known that these are neurological symptoms and I can only hope this link might also help in getting the treatment you need or self treat to avoid permanent damage.
Thank you everyone. I can't tell you how much it means to me to know that, despite whatever psych issues I have, I'm not the irrational one in this situation.
I've had my folate, iron, and vitamin D checked a few times, and they're all in the normal range. I also had one of the "active" B12 tests (MMA?) a year ago, and that was also normal. The only odd thing that's turned up besides the low B12 is an MCV that's consistently a little over 100, and an RBC that's always around 3.5 or 3.75. No one's remarked on this at all; I just see it in the lab results every time they run those tests. My thyroid has been checked a few times and is always normal.
Oddly, I've never had the parietal cell antibody test. I'm not a vegetarian or vegan, so I'm pretty sure my diet didn't cause the deficiency, but I still don't know what's behind it. When the deficiency was first found, I was offered a referral to a gastro, but after discussing it a bit declined because it seemed like whatever it was the treatment would be the same: shots for life. Silly in retrospect--what if there was something bigger going on? what if I changed doctors and needed "proof" of a problem?--and I'm not sure I could get that referral now without a whole lot of arguing.
I did see two neuros while on the merry-go-round, both of whom did in-office exams and looked at the MRI report (I'm not sure they actually looked at the images), then went down the stress/anxiety/depression "let me give you a psych referral" route and dismissed the concerns I raised about the B12 issue still being unresolved because "your levels are normal." One did run blood tests for celiac, lupus, lyme, HIV, syphilis, and god knows what else after I said I'd be very upset if I ended up spending another few years in therapy while a physical illness became worse and worse. All of that turned out negative.
Thank you for the link, Poppet and Polaris. I'm pondering printing it out and writing a letter to whoever is supervising my doctor (I've given up hope of her reading anything I send her). Writing "B12 deficiency isn't simple. You are" at the top is very tempting...but I'll have to resist. I saw the society has a sort of cut & paste form letter for this sort of thing, and will have to look at that more. Only worried that because the article is of British origin a US doctor will dismiss it as "those crazy Brits can do what they like, but I'm not going along with it"--though obviously the BMJ isn't some obscure, unreliable source. Are there any US folks out there who have experience with this?
And does anyone have recommendations for online pharmacies that will sell B12 to someone in the US without a prescription? I saw that Canadians will sell it to you OTC if you go up there in person, but that you need a prescription to order online. I'm 5 or 6 hours from the border, and don't have a current passport, so hoping to avoid the trip.
I'm very aware that an untreated deficiency will have serious consequences; I found that out when I got off course with the shots, and I've seen it in the stories I've read here. A lot of my job requires attention to detail and writing and proofreading, so in some ways I'm more concerned about the cognitive deficits than the physical impairments...
And I really do want to do this right way and get a prescription and have it all documented in my file so I don't have to keep arguing with people. But one of the neuros I saw was at a major, internationally known hospital, and he was very dismissive about the possibility of all this being a B12 issue (though he was also a general neuro, not a B12 specialist)--so I'm honestly not holding out much hope that I'll be able to persuade anyone. I'm worried too that pushing back will stick the "crazy lady" label on me even more firmly.
And part of me is wondering if I could have dealt with the psych issues once and for all years and years ago if only I'd had a B12 test and gotten on the shots early...and that now I'm stuck with some sort of neuropsychiatric damage that will stay with me forever.
Thank you again for all your responses. It's so helpful to know I'm not the only one going through this. You really do doubt yourself when you're dealing with mental illness. I have some weekend guests coming in a few hours, so forgive me if I can't write again for a couple of days.
"Are there any US folks out there who have experience with this?"
Me!
It sounds like we've had similar experiences as far as seeing different doctors and having tests run but being told everything is 'normal'. I have an ongoing joke with my friends that I'm the normal one in the group because I have the scientific proof to back it up.
I have ordered from a couple of places online in the past. One place is called Trim Nutrition. Trim Nutrition got around the need for a prescription by simply providing a prescription when you order it. Their practices may have changed though. I stopped buying their product when their prices drastically increased (due, they say, to new regulation affecting compounding pharmacies). The next place I ordered from was called Midwestern Medical Supply. They claimed their product was produced in the US, but it turned out to be produced in the Dominican Republic. I don't think there was anything wrong/dangerous about the actual product, but the FDA issued a recall against it because it was labeled falsely and the website seems to have since disappeared.
I'm in the same boat you are as far as not knowing of a reliable and safe source of injectable B12. If you come across a good place to order it, please let me know. Apparently lots of folks order from goldpharma in Germany though. So that's one option.
I really wish it were simply available over the counter here the way it is in so many other countries. But there would have to be changes made in the Title 21 Code of Federal Regulations to allow it. Know anyone who is good at writing petitions?
Amazing that they consider syphilis and not B12 deficiency. What they are looking for with syph is the element known as Tabes. This causes degeneration to the spinal cord. Over 150 years ago they knew that degeneration of the spinal cord (which was then a separate illness and probably B12 deficiency) produced exactly the same symptoms as Tabes.
So now they will look for Tabes but not damage caused by B12 deficiency. Yet they both produce the same symptoms!
Yes, I thought the syphilis test was especially bizarre. If he'd bothered to ask any questions about that sort of thing, he'd have realized it was an extremely remote possibility! Not much energy for getting up to that sort of mischief when you're busy trying to convince yourself that taking a shower and getting dressed isn't really entirely pointless...
I suppose I'll wait to see the hematologist and hope she's slightly less clueless, and see if I can get her to test for PA. If not, I'll put my PCP on notice that I'll be holding her responsible for any harm that comes from stopping the shots.
Too bad there aren't known, reliable sources for Americans. Maybe I'll experiment with the sprays and see if they help. My brother lives closer to Canada and goes over once or twice a year, and a friend of a friend is Canadian and visits family there now and then. Maybe I'll see if they're up for scoring me some B12!
I honestly can't figure out why this is so difficult! Is it some kind of "it's only a vitamin" thinking? Or is it due to the shortage in North America? Or because the ACA is making insurance companies get a stick up their bums?
So I saw the hematologist earlier this week--and it went about how I expected it to. She talked to me for less than five minutes to get a history, then started asking about the Wellbutrin and Xanax and what I was taking them for and how long I've had mental health troubles. I can never manage to talk about that without getting tearful, so of course I ended up crying.
Her conclusion was that she couldn't recommend continuing the shots because there was no indication in my history that I needed them and my B12 was high-normal when my PCP checked it during my physical last fall. (I had no idea she'd checked it then and never got the results. If she'd bothered to tell me she was checking, I'd have told her I'd done my monthly shot only the week before, so it would naturally be high and not at all accurate.) I tried to point out that the deficiency was found several years ago and I was told then I'd need to be on shots for life, and she responded, "I don't know what your level was then, and I don't know why you were told that, but your level is normal now. You're young, and you shouldn't need to be injecting yourself." I asked to be tested for PA, and she told me that the test would not be accurate because I'd been injecting.
She agreed to tell my PCP that I felt strongly about continuing the shots, but that in the absence of evidence to continue them, she could not make that recommendation. She said she thought there was something else going on (and since she didn't make suggestions as to what that might be or refer me back to my PCP for further investigation, I can only take that as code for "this is clearly a psych issue").
I haven't heard from my PCP since, and doubt she'll ever call. I'll give her a few more days, then call to make one last try. After that, I think my options will be (1) contacting the patient advocate department, presenting them with the information and standard of care established by the CDC, and pointing out all of the ways the information she's given me is mistaken and how she's failing to meet the standard of care, or (2) injecting on my own (my husband found a Canadian pharmacy that doesn't require a prescription and seems reputable).
The first option appeals to me because it could potentially benefit other patients with B12 deficiencies and call her out to the powers-that-be. But I'm not sure how seriously I'd be taken--after all, "it's only a vitamin" and I have a psych diagnosis. Has anyone gone this route before? How did it turn out?
The second option would help me in the short term, but then I'd have to figure out whether I tell her I'm self-medicating and risk getting another mark on my chart or being kicked out or don't tell her and let her go on thinking she's correct and can treat all patients with deficiencies this way. Does anyone have advice on this? Has anyone been kicked out?
Galixie, this is the pharmacy I'm planning to order from if need be: biosensepharmacy.com. I can report back or PM you on how it goes, if you like.
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