American attitude to B12 deficiency

[Dewbuc]

Does anyone know how this issue is handled in the US. Do patients fare better in a private medical system in a highly litigious society?

[Galixie]

"Do patients fare better in a private medical system in a highly litigious society?"

No.

The problem is with the knowledge of each individual physician though. It cannot be blamed on the entire network specifically failing for just this one disorder. It starts with the education of the doctors, where B12 deficiency and pernicious anemia are mentioned briefly at one point, and it's somehow expected that medical students will manage to retain that brief mention for the rest of their careers.

Then there is the money issue. Medical students are compelled to pick a higher paying specialty of medicine if they ever hope to pay off their student loans, so we have far fewer general practitioners than we need. (Plus the cost of liability insurance for each doctor is so astoundingly high that it can deter some doctors from practicing medicine.)

The fact that there is no new and interesting research to catch the eye of practicing doctors and draw them in to become better education on B12 deficiency means that whatever they vaguely remember from medical school becomes the basis for how they diagnose and treat patients.

And, unlike the UK, in the US there isn't a BNF that gives specific direction on how to diagnose and treat B12 deficiency. So we are really at the whim of how much our doctors know about the topic to begin with.

But sometimes you get lucky and find a doctor who is up to speed, or who is at least willing to listen and get themselves up to speed, on the topic.

[Dewbuc in reply to Galixie]

Thanks for your reply.

[Hidden]

Interesting question, but from what I have read on the subject it seems they do no better than we do. The first book I read on B12 deficiency was one by the Americans Sally Pacholok (nurse) & Jeffrey Stuart (her doctor husband) entitled "Could it be B12 - an epidemic of Misdiagnoses. The medical insurance companies could not be sued - they just pay - but the doctors could I imagine, whether they are or not I don't know, been a long time since I read it.

A good read is a book called "Confessions of a Medical Heretic" by Robert S. Mendelsohn, M.D. - a bit of an eye opener. I would hope it doesn't apply to the UK but we usually end up with what goes on across the 'big pond'. Was just reading today that the average amount of prescription drugs taken by Americans is 13 - now that's a sign of a healthy society.

I will let you know if I find any stats.

[Dewbuc in reply to Hidden]

Thanks. I appreciate your support.

[SATTX]

We in the US(Texas) do not necessarily fare better than our neighbors across the pond in a private health insurance society. I have been recently diagnosed with PA(finally, my b12 level was 54) I have had iron deficiency anemia since I was a child and have been on/off iron supplements what seems like forever and hearing from doctors time and again that it was my "girlie" problems causing the ID anemia. Finally, on one of my routine iron checkups a nurse practitioner noticed that my red blood cells were abnormally shaped sent me to a hematologist and lo and behold, I am diagnosed correctly! With the exception of the acne caused by my b12 monthly injections, I am starting to feel the benefits of the b12. If someone has any great tips on how to combat the b12 related acne, I would greatly appreciate it.

[Gambit62 Administrator in reply to SATTX]

sorry to hear about the acne - it's likely to be microbes on your skin reacting to the additional B12 after you have a shot and secreting toxins that your skin then reacts to - the only thing I can really suggest is either seeing what a pharmacist can recommend by way, eg of a wash that might help with keeping the skin clear of the toxins, or seeing a dermatologist.

[evilellie in reply to SATTX]

I had the acne really badly at first, but it seems to have calmed down a lot since, I think I get a few extra spots after my injection, but it's nowhere near as bad, and they're just teeny ones. So it might just be a case of waiting it out.

[SATTX]

Oh and btw, the best information that I was able to locate on Pernicious Anemia was the "Pernicious Anemia Society" website in the UK.

[Gambit62 Administrator]

I'm not based in the US but would have to echo what has been said from observation - we had a recent poster who reported that she was getting reasonable treatment because her doctor was actually British and was following the BCSH standards.

If anything I suspect that many are even worse off in the UK as treatment can often be determined by what the insurance companies are prepared to pay for and there seems to be a growing tendency to push oral treatment to the exclusion of any other treatments - many have found, now that oral is formally licensed as a treatment by the FDA that their insurance companies are starting to refuse to meet the cost of injections.

[wedgewood]

I think it might boil down to the fact that there are no big bucks to be made out of B12 . The big powerful pharmeceutical companies have no vested interest , because it cannot be patented . These companies wield enormous clout . Their Influence is phenomenal .

If B12 were administered where needed , many pharmeceutical drugs would not be required . Because neglected Pernicious Anaemia results in terrible health problems, and prescription drugs .

I'm sure I will hear howls of disapproval,writing this . I'm almost afraid to post it , but I will !

[SATTX in reply to wedgewood]

This would explain why so many are misdiagnosed and placed on prescription medication.

[fbirder]

If you believe what you find on some web sites, the Americans are treated worse than us because they have to put up with cyanocobalamin. And that isn't easily converted to the usable form (yes, those websites only mention one - methylcobalamin). And if it is converted it releases deadly cyanide.

According to many websites.

[wedgewood in reply to fbirder]

I have never seen that on a website . Clivealive stays very well on Cynocobalamin . Hydroxocobalamin just doesn't need injecting so often . I think you know all that !

[Gambit62 Administrator in reply to wedgewood]

on average hydroxocobalamin is retained 2x as long as cyanocobalamin - however, that is an average and with all things B12 an average covers a lot of ground - enough people actually maintain hydroxo for a shorter period of time than cyano for the study that looked into the differences to put a huge health warning on taking it as meaning that the frequency of hydroxo injections only needed to be 2 monthly (let alone the three monthly that is recommended in the UK for someone who doesn't have neurological issues).

[wedgewood in reply to Gambit62]

Thanks for that Gambit62. I'm truly grateful to you for your fantastic knowledge. B12 is an incredible subject . You help bring the knowledge to us . Thanks again !

[fbirder in reply to wedgewood]

Well, these people - healthunlocked.com/search/c... - picked up the idea from somewhere. And it doesn't take long with a Google search to find out where - clickbait website extolling the virtues of methylanything.

[wedgewood in reply to fbirder]

I think we just have to accept that everybody is different . It's great if we can find a cobalamin to suit ! Having tried Methyl , I now opt for Hydroxocobalamin because it does the job just as well for me, and is easier and cheaper to obtain than Methyl.

[Shattered-FedUp in reply to fbirder]

And yet it's the one I use every other day because it suits me better!

[Retren]

I was fortunate once again for my spouse to diagnose me since I was widowed my Family practitioner said my results were fine except I did not feel fine so I just took it upon myself to self inject I figure I am an octogenarian as my brother said so the odds aren't very upsetting and if one feels improved it merely points out the patient is right.in any case it is better than the early days of the condition.

[KimberinUS]

I live in the US and my answer the the poster of this topic is yes and NO!

NO, meaning we have a very difficult time getting diagnosed with a deficiency because b12 isnt tested very often unless the mcv comes back above range high, which can be the last symptom of a b12 deficiency. My mcv has never been high and was only 94 with a b12 of 169 when range was 200-1100 and was told to take a b100.

16 months later, after taking b100 and multivitamin daily, my mcv was 95 and b12 of 246, same range. I felt worse, even though my b12 was higher. That Could have been due to having laughing gas during a dental visit inactivating the b12 i did have. I only received that information from this forum.

Anyway, another 17 months later, at the end of last month, July 2017, i argued my way into a test for h pylori which low and behold was positive. My point being, there is no book/info for US doctors to look at for guidance on what to rule out when they have a b12 deficient patient. They just tell us to take an over the counter pill and dont even have us come back for a follow up appointment to see if it is working. They also never check folate levels.

I would say U.S. patients have an easier time getting what they need once a diagnosis is determined. Unfortunately that determination can take years, as in my case, or never if the patient leaves the research up to their doctor.

Once a US patient has a diagnosis, we can demand the treatment we want. And if doctor refuses, or gives us the stink eye,or hypochondriac look, we can change doctors the following day. And our medical records do not follow us, unless we sign a form giving our prior doctor permission to send our medical info to our new doctor. This means we can have a fresh start with a new doctor.

Doctors here have no monetary connection to their office saving money. In fact i would say the opposite is true. If a US doctor prescribes a medication enough times the drug manufacturing company incentivises the doctor through gifts, dinners and trips. But this only applies to newly patented drugs, not a vitamin.

So basically getting proper treatment for b12 def/PA is difficult in the US also. I basically had to become my own doctor and do all the research myself. If i left it up to US doctors, i would be on an antidepressant, thyroid medication, a gluten free diet, hormone suppliments, something for joint pain/arthritis and a b12 tablet.

Uhmmm... maybe the doctors are hypochondriacs.

And i could look forward to being prescribed another medication for a possible future ulcer from undiagnosed h pylori.

I could go on... but i will stop here because anything more would be a never ending rant.

[Retren in reply to KimberinUS]

Kimber in UsI live in us and wonder which state you live in.?for our English friends the different states require different licensing.

[KimberinUS in reply to Retren]

I currently live Georgia but i have also lived in Kansas and Oregon during the last 3 years of attempting to go to doctors to figure out what was wrong with me.

[MoKayD]

I agree with KimberinUS. I diagnosed my own B12 deficiency. My GP was very agreeable when I asked him to test my B12 levels but I wonder now why he didn't test my B12 it in the first place. I had been diagnosed for anemia several years before my B12 diagnosis. Shouldn't every doctor know that low iron and low B12 often go hand in hand. I also self diagnosed my anemia. I had complained to both my GP and Gynecologist about being tired all of the time, but neither of them ever ordered an iron level test for me. I started chewing ice and a friend of my sisters told me that was a sign of iron deficiency. Sure enough, I was deficient in iron.

On the other hand, since my B12 diagnosis everything has been great. I can get my B12 shots whenever I want them and they are covered by my insurance plan. I am currently getting a shot once a month. I think I'm going to start going every three weeks. Week four is a little rough.

[NJMommy]

Hi all, I'm is the US. I live in New Jersey and was sick as a dog before I was diagnosed. I had very severe neurological issues and was bed ridden. My situation was similar in that no body could seem to figure out what was wrong with me. I don't think it's an insurance issue, but I am lucky and have decent coverage. I don't think it's an issue with any treatment guidelines. Once I was properly diagnosed I haven't had any issues with my doctors. I've had 2 hemotologists, my GP, my rheumatologist and a neurologist all tell me that every PA patient is different and responds differently to treatment. They also said that since B12 is water soluable I can't overdose. I've basically been told to handle my own dosing and let them know what I need. I go in every 4 months to make sure my other vitamin levels and iron are okay.

I think the trick in this US is to find doctors who will take the time and make the effort to listen to their patients.

[Dewbuc in reply to NJMommy]

I'm so glad you're finally being well treated. Good luck for the future.

[Brian77]

Is it just me, or is MTHFR an unfortunate acronym? I don't believe the cyanide danger, it is 1/1000 of the allowed daily dose.

The body can deal with small amounts of cyanide, usually by using sodium thiosulfate, converting the cyanide ions to thiocyanate, which you then excrete via kidney.

That said, my USA doctor subscribes to "up to date", and uses evidence based dosing from there. I have switched to oral and that is working quite nicely.

[bquoss]

Because the U.S. uses the market for health care, patients need to become very well informed and act as their own consumer advocates. The Pernicious Anemia Society remains the very best information source, including this forum, but you are your own advocate in the U.S. system. You have a good doctor, it sounds!