Feeling Hopeless

I'm a 32 year old male (of northern European descent [british/welsh?]) in the United States. I was diagnosed with pernicious anemia (intrinsic factor antibody) a few months back. This is after a couple years of dipping down into low B12 territory, and going as far as having a hospital stay / blood transfusion. It blows my mind that I had to take the initiative to ask for the proper tests (I guess the protocol here is really that bad?), but that isn't the point of my post.

I've been working with a hematologist now since my hospital visit and since getting on monthly injections, my levels have barely gotten into the 300s pg/mL. I notice towards the end of the 4-week period.. maybe 2.5-3 weeks in.. that I start to drag. My mind starts to go and I begin having a hard time at my technical job (to the point where I think about quitting). I let my doctor know this last visit and requested to try 3-week intervals. He initially considered it, but then reverted back to staying the course at 4-weeks. I mentioned to him my "foggy" state but he's under the impression that since my CBC panel is in good shape, that neurological impairment is out of the realm of possibilities. Just from my time on these forums and reading various publications on the Internet, I know this is not the case.

I'm just frustrated. I feel we shouldn't have to fight so hard for something that is naturally available to 99.9% of the population. I'm going to see my general practitioner to see if he'll work with me. Does anybody have any advice? Or maybe just positive words. This thing has ruined the last 10+ years of my life and many relationships. Thanks for listening and I hope this message finds you well.

Josh in Oregon, USA

20 Replies

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  • Hi Josh

    Just remember you are not alone and others know what you must be feeling but there are ways forward, even though you are in the States. You mention your B12 at 300+/- but your other blood tests would be worth posting here with the reference ranges ( hide any personal details) for example your folate is important when taking B12 as they work together are you taking folic acid with your B12 also do you have neurological symptoms of B12 as you should be on every other day until no further improvements this is the protocol in the UK. Also your Iron levels and your Iron Ferritin what are your levels here. There are lots of good people on this site who can help. Keep Strong

    Mark B12 Sufferer

  • Thank you so much for your words, Mark.

    FOLATE 16.1 ng/mL reference: >=5.4 ng/mL

    Ferritin 142 ng/mL reference: 22 - 322 ng/mL

    VITAMIN B-12 (2 wks after last injection): 329 pg/mL reference: 211 - 911 pg/mL

    CBC looks great. Better than it has in a while. Metabolic panel is good.

    --

    I'm going to make a copy of the B12 protocol to take in with me. We never did any such loading (every other day) regimen.

  • Any time, just keep in touch with the forum and report back you should really be on loading doses to get your b12 up definitely see your doc again and push for this.

    Let us know how you get on

    MARK

  • Ask your doctor for more frequent injections - again. If he refuses ask the GP. If he refuses, ask to be swapped to injections of hydroxocobalamin (not sure if it's available in the US) as that tends to last longer.

    Or you could try sublingual B12 lozenges or sprays. Some people find they help.

  • Thanks, I'll do that.

  • it can be really difficult to get hold of hydroxocobalamin in the US.

    ojoshua, 300 is actually a very low reading 2 weeks after a B12 shot - it will have come down from astronomic just after your shot - which means your rate of loss is actually well above average so you definitely need injections more frequently. The rate of loss of B12 is greater the higher the level of B12 in your blood so levels drop by about half in the first 24-48 hours. On average though - levels would be much higher at 2 weeks but everyone is different when it comes to B12. Possible that hydroxo might be retained longer - on average its00etained for twice the length of time that cyano is but even then some people are the other way round.

    Sublinguals can help with keeping levels up but if your rate of loss is high then you may well need quite high doses to keep your levels up. You can also get nasal sprays in the US and they might be a bit more efficient in terms of amount absorbed (averages 3% compared to the 1% for sublinguals). No guarantee though that you are average :).

    You could suggest that doctor and GP take a look at this site - even if PAS is UK based.

    pernicious-anaemia-society....

    There aren't actually any national protocols in the US which makes life really difficult - treatment varies from doctor to doctor. Generally though there would be a loading protocol - could be daily, or weekly before going on to maintenance even in the US.

  • I thought that was an awful fast drop, too. I'm going to follow up with my general doctor. Thanks for your information!! So glad I found this group.

  • Im in the US also. We can get b12 injections at weight loss clinics. Be aware some only offer weight loss b12 injectiins which I have approximately 300 mg of B12 plus other items in it to help someone lose weight. A second, way less requested, injection of straight 1000 micrograms of B12 is also an option at some weight loss clinics. I choose the straight B12 shots. I get them weekly. They cost me $15 a week. Good luck and I hope you feel better

  • Wow, that is helpful information. I will research this. Thank you!

  • Do you have any information on how I could find one of these clinics?

  • I just googled b12 weight loss clinic and my city name. I have 2 places in my area. Once i went and got one injection from each in the same week.

    ALSO, if your blood tests show white bliod cells and the number is anything over 6 or 7 you might consider testing for h pylori.

    My white bloid cells had been over 7 for 3 years so i got tested even without any stomach pain, which just means no ulcer,. I was positive for h pylori and am hoping that was why i was b12 def even though i ate meat daily and supplemented with b12 tablets for 3 years and still felt like crap, crap and more crap.

    Also, i think you are in Oregan, so def check your vit D if it hasnt already been checked.

    Best wishes

  • Thanks so much. You are a life saver. I just found a clinic that will give me a prescription for weekly 1000 mcg shots. I am finally not going to go another cloudy Oregon winter being B12 deficient and depressed!

    I will also check up on H Pylori. I'm on top of Vitamin D (my mom has MS), but I'll look at that too.

    Thanks again!

  • Thats awesome!!! This forum was a life saver for me.

  • No doubt! This disease has ruined a big portion of my life. Not having the energy to maintain friendships and close relationships. The cognition problems. It's just horrible. Glad there are things we can do for it.

  • Joshua, what is your diet like?

  • I just read your post on your mom having MS. I, too, am of British decent and have struggled with MS, low vitamin D, B12, hashimotos- my MS is almost gone. No more brain fog for me. Definitely try taking gluten out of ur diet completely. I know this sounds strange, really strange, but that's what I thought. I now have been gluten-free for almost a year and my MS symptoms are almost completely gone. Once you get gluten out of your diet there's other things you will need to do. If u haven't tried this already, you will be amazed just after one week off of gluten. If you feel better, keep off of it. Fresh living food is what you need to strive for. No processed food. Let me know how it goes...

  • Thanks for the advice. I haven't had gluten for a couple years now. I mostly follow a low carb (ketogenic) diet. Mainly vegetables and meat/eggs :).

    That's really great your MS is almost gone. I wish I could get my mom to go gluten free! I'll work on her. For me, my only problem is I can't get B12 naturally!

  • Before I was diagnosed with pernicious anemia, they thought I could have celiac disease. That's kind of what got me away from gluten. Like you, I feel much better off it!

  • Good, but I'm sorry you still have problems. Have you been tested for the MTHFR gene mutation?

  • Yeah, I don't have the MTHFR mutation! Just VDR Taq, MAO-A R297R, MTRR A664A, and some heterozygous COMT stuff. :).

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