Continuous fatigue

Hello,

I was diagnosed with PA about a month and a half ago after many appointments and blood tests. Since I live in the US, I was prescribed weekly injections of cyanocobalomin for 6 weeks, then one injection a month for the rest of my life. Retesting for IFA and B12 levels after 5 weeks. I am also anemic from the PA and my worst symptom is fatigue. I can't do anything without having to take a nap. I have been on the injections and iron supplements for 3 weeks now and was wondering if this will ever go away?

20 Replies

oldestnewest
  • Did you have your folate measured?

  • I'm not sure. I've had so many blood tests that I don't remember them all.

  • Worth checking. Low folate can cause the same symptoms as low b12.

  • Well I for sure have PA. It isn't a wrong diagnosis. And taking folate supplements can alter b12 readings in a blood test. But I'll for sure ask at my next appointment.

  • Taking folate cannot possibly alter B12 results. The B12 test uses a method specific to the various forms of the B12 molecule.

  • Okay... I'm just saying what I was told by my neurologist. I will ask next time though.

  • I didn't say it was a wrong diagnosis. It is perfectly possible, and not unusual, to have both a B12 and a folate deficiency at the same time. You may be treating one and not the other.

  • First the good news: barring any major conditions not recongised yet you will definitely get better.''

    The bad news is you're going to have to fight for it and it's going to take time.

    The very first thing you need to do is get off of cyocobalamin. It's an entirely artificial form of B12 and is much harder for your body to utilise. There are four types, video here:

    seekinghealth.org/resource/...

    I don't know whether I have PA or not, I simply know that I don't absorb dietary B12, so I have been on injections for three years now and following the previous three where my fatigue got so bad I contemplated suicide almost daily, I am now comparatively on cloud nine - even though I also have a chronic sleep disorder which has taken years to get refered for the right tests, and I finally saw a sleep expert three weeks ago, have an MRI on Friday and a whole bunch of other stuff. I'm in the UK so things work differently, but you absolutely have to insist on hydroxycobalamin at the very least, because this is at least natural. Whilst cyano does have a cyanide component it is infinitesimal, but your body still has to process it out, and when you're seriously deficient you need all the help you can get.

    That said, when I started on injection my doctor would only give me one a month and because I had done lots of research - I was doing a psychology degree at the time so had access to and sufficient training to understand complex medical research, and I disovered two very important facts:

    Firstly, what are deemed healthy levels of B12 in the US are lower than in the UK, but even UK levels would be seen as the lower limit of acceptable in Japan, where, secondly, when you first start treatment for B12 deficiency you need injections every three or four days for a month or two, then start increasing the time between the injections until you find your natural level, which is unique to you.

    Because my GP (general practitioner - family doctor; apologies if I'm being patronising but I have no clue whether you use the same term in the US so would rather risk patronising you and have you fully understand than leave you wondering what I mean), because my GP would only give me one injection a month to start with, and five days after the first injection - of hydroxycobalamine - I felt llike I was on amphetamines/walking on air/bouncing off the walls, whereas I had been slowly moving through a living death for three years, so there was no way I was going back in that prison. So I sourced some B12 online, had a nurse friend teach me how to inject, and started my own regimen according to the latest Japanese research, and they are the world leaders - Japan has the lowest rates of all B12 deficiency related conditions in the world to the best of my knowledge; and it's not just because their diet is so rich in fish, although that's part of it because B12 comes from animal sources but it's actually something animals produce from microbes they consume, and if their diet is not good then there's low B12 in the meat. They also need to be consuming trace elements such as cobalt, but seventy or so years of artificial fertilisers are stripping the soil, which I believe is one of the reasons B12 deficiency is becoming increasingly common.

    This is good news because even compared to three years ago western medicine is considerably more informed. Don't get too excited though because a thousand percent increase in knowledge when only ten people know only gives you a hundred people, but it seems to be growing exponentially, so it's going to take a few years but you younger you are the more reason you have to be optimistic. I'm very nearly 47, was diagnosed with hypermobility syndrome - genetic connective tissue disorder - at 38, and hardly any medics I met had heard of it; now I would say it's about 30%, and in another eight years (I was diagnosed in the December) I expect around 50% of doctors will know about it, and I'm finding a similar story with B12 deficiency.

    I've written a lot for someone who is under what I call the lead blanket to read, so I won't say much more, except that you're not alone, many of us have been there and know what a living hell it is, but it really does get better. In time you'll be able to start working on your diet, and a little bit further down the line you'll be able to start adding in some moderate exercise, further along still you'll be able to increase your activities, and sooner or later you'll be leading a normal life again if PA is your only condition.

    BUT YOU HAVE TO GET ON TO A BETTER SOURCE OF B12 - cyano is literally rubbish. Admitedly the stuff I was getting online was cyanocobalamin but I was injecting three times a week for several months. After about a year I was able to convince my GP - using the guidance link below - to put me on repeat prescription for hydroxycobalamin, which is still no the best but it's pretty decent and I have not had that wet duvet/led blanket feeling for well over two years now.

    So it get's better, you just need to be patient. I know that sounds aweful, but I really feel for you because it is indeed a living nightmare, so I'm trying to impart some hope because you'll find lots of people on here telling you the same thing. And I guarantee that in six months to a year you will be writing a message just like this for someone who is where you are at the moment. Stay strong - you need to be so you can slap all those people who keep saying "oh yeah, I know just how you feel, it's horrible when you're wiped out". when in reality the worst they have ever suffered is exhaustion at the end of a long week of hard physical work. But they rest, sleep, eat and are raring to go again on Monday. They have no idea and as you well know, it makes you want to scream when people who clearly have no idea starting trying to empathise or, worse, offer you advice.

    The only advice worth hearing is from people who have been there.

    Keep us posted, it will be a true joy to hear about your progress :-)

    Love and light

    Jason

  • Cyano certainly seems to work for clivealive

  • QuarkyOlympian. Cyanocobalamin is no more harmful than any other form of cobalamin. Nor is it what you call 'rubbish' or inferior to other forms.

    Different cobalamins suit different individuals... clivealive has been using cyanocobalamin successfully for 45 years, having found that hydroxocobalamin did not suit him.

    And it's the cobalamin prescribed by several European countries...successfully.

    Here's some evidence:

    ncbi.nlm.nih.gov/pmc/articl... (No Superior Forms of Cobalamin)

  • Yes I believe most doctors prescribe cyanocobalamin in the US. There isn't an option. All research I have done shows that there is no superior type, just what fits you best.

  • Hi - I have been contemplating self injecting as I become quite (well very to be exact) poorly in between my three monthly treatment but I have NO clue where to source hydrox ... or what needles/sharps etc to buy/where

    I need an idiots guide shopping list to help me so if you're able to help that would be superb - thank you

    Angie

  • My cyanocobalamin is prescribed for one injection monthly from my doctor here in the US. I am starting injections on my own this month and can let you know what other supplies I buy and where! (:

  • Hi there! I've been searching for this post for a while and have not been able to find it until now. I just wanted to let you know about what to purchase. I get a vial of cyanocobalamin and a needle with my prescription order so I cant give you much for specifics unfortunately. My neurologist directed I give myself my injection on the outside of my thigh right after I've showered (for cleanliness). Let me know if I can help more!

  • Update! I now know that I have been using 1 inch 3 mL needles if that helps. Of course I only have a dosage of 1 mL so I dont use the full syringe.

  • Hi Gg4997

    I've been on cyanoccobamalin for 45 years simply because that was what was standard in the UK in the 1970s.

    Until the middle of last year it was injected every four weeks but I now have an injection every three weeks as I've been having a return of symptoms in the run up to the next one.

    When hydroxocobamalin was introduced in the 1980s I had an allergic reaction and couldn't "last" the 12 weeks so reverted back to the cyano and I'm still "clivealive" at 75

  • I have been on cyanocobalamin weekly since 2005. It keeps me asymptomatic. If I go ten days, symptoms return. I haven't tried the hydroxocobalamin. The doctors here don't prescribe it, only the cyano.

  • Do you know what your Folate level is?

  • I do not know what my folate level is. And same with the doctors in my area, they only prescribe cyanocobalamin.

You may also like...