Self injections?

I'm in the US, I was receiving 1000mcg vit b injections weekly for 10 weeks. My intrinsic factor is fine, no bloodwork shows pernicious anemia. B12 is 800 now, was 250 range (200-900). I've now been told to use prescription nasal drop once weekly. I can feel myself going down hill. I've had ALL thyroid testing possibly done which is good. My hands & feet are always ice cold, I've had hair thinning so now using minoxidil. Foggy brain, tired, I have almost ALL of the pernicious anemia symptoms. I also do have nerve damage which is the only test that shows I'm not crazy, this showed on the EMG. Im considering self injections but in the US they don't allow this. How do you do it in the U.K.?

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  • I'm the US as well and it's perfectly legal to self-inject. I have been self-injecting for a while. You can get injectable B12 online, including ushcgshots.com/ where I purchase mine.

  • Hi Crzygirl if P.A. has been definitely ruled out the it may just be that you are Vitamin B12 deficient as he symptoms (and initial treatment) are virtually the same.

    It is not uncommon for some symptoms to seem to get worse before they get better as the B12 you've had injected gets to work repairing the damage done to your nervous system. There is no set timescale for how long improvement will take and we are all different.

    Your B12 level at 800 is understandably high after your injections and with P.A. ruled out are you able to increase your intake via food? B12 is sourced naturally by eating animal products - red meat, fish, seafood, eggs, poultry and dairy produce.

    Do you know what your Iron and Folate levels are? Folate and B12 help iron to make red blood cells and a deficiency in one or other blocks that process.

    As I'm in the UK I wonder if ndodge might be able to help you with self injecting if the nasal drops are not effective.

    I am not a medically trained person but I've had P.A. for 45 years.

  • I do take a prescribed folic acid called Deplin, as I have the MTHFR gene. I do eat dairy, meat, eggs. I also take an iron tablet daily as I am "borderline", but I do not have my numbers on hand for that.

  • I believe the intrinsic factor test is far from accurate, (how many times was Martyn Hooper tested) anyway with neurological symptoms I believe that injections should continue.

    Someone please confirm that I have got this correct.

  • Crzygirl, there should be no problem with self-injections in the U.S., where I live. I have been self-injecting for about 10 years, by a doctor's prescription. Some pharmacies are very careful about selling needles, although the compounding pharmacy I use is very easy.

  • How did you get your doctor to give you them weekly... mine is doing monthly 2000 micrograms and I start at 140 its been 6 months now I am at 220 I feel terrible still... I am a teacher and I literally almost forgot about an entire classroom of students.. I have asked for more frequent shots and he said no. Weekly would be amazing especially if i could get to 800 in 2.5 months!

  • Because I have neuropathy. But they did try 1 month for a few months with. No improvements. Shouldn't have nerve damage at 21.

  • Have you had the MMA test? I think that is correct.

  • Yes, normal- as always!

  • Hi Crazygirl,

    As you're in US, have you read "Could it Be B12" by Sally Pacholok and JJ.Stuart (USA authors)?

    It's a very comprehensive book about B12 deficiency with lots of case studies.

    B12 Awareness (USA website)

    b12awareness.org/

    PAS (Pernicious Anaemia Society) is based in UK but has members from around the world.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    There is one PAS support group in USA, In St Louis, Missouri. I'm sure PAS would love to hear from anyone else in US who'd like to start a support group.

    pernicious-anaemia-society....

    "My intrinsic factor is fine"

    In UK it is recognised that it is possible to have PA even if IFA (intrinsic Factor antibody) test is negative (called Antibody Negative PA). See links below.

    stichtingb12tekort.nl/weten...

    b-s-h.org.uk/guidelines/gui...

    I'm not sure if Antibody Negative Pernicious Anaemia is recognised in USA.

    Who gets PA and B12 deficiency?

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

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

  • Yes, I did read the book & actually saw the movie. It sure sounds like me. Other than my b12 being in the "grey area" before I started the injections I have nothing to go on. I will read those links if I haven't already, thank you. I spent all last night crying for no reason, I'm also calling my Gyno to see if I should go off the pill even though I get terrible cramps & pms. But I always feel so moody now, just feel lost !

  • Self injecting is perfectly legal, it's getting the B12 and syringes that are more of a problem. In the US all injectables require a prescription in order to purchase them from a US pharmacy. The common way to work around this problem is to order them from somewhere else. Canada sells injectable B12 over the counter, so you don't need a prescription to buy it *if you are in Canada*. The kicker is that legislation was passed in Canada so that if you try to order it online and have it shipped to you in the US, you must have a prescription. There may be some retailers who are skirting that law. I don't know.

    I do know that if you were to go to Canada and purchase some B12, you can legally bring up to 50 doses of any over the counter medicine for your own personal use back across the border with you. Sadly not all border agents remember this tidbit of info, so you may need to be very patient with them.

    I'm not at all familiar with Mexico's policies, so I don't know if there may be retailers there that you can order from.

    The availability of syringes varies by state. The state I live in allows pharmacies to sell syringes of any size without a prescription, but it is at the discretion of the pharmacy (meaning they can choose not to sell them). Other states allow only the sale of insulin syringes without a prescription, while still other states do not allow any syringes to be sold without a prescription. You can find syringes for sale online, but you might be hindered by the laws of your state.

  • I picked up 3 doses I had left from my pharmacy & they asked if I needed syringes. I had no idea! But now I'm waiting to hear if I should continue. Waiting to hear from my neuro first & a nurse at my Gyno said the b12 may be part of my problem with depression/anxiety , which makes no sense. I know the birth control pills can make depression/anxiety worse but too much b12 wouldn't be causing that!

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