Low Ferritin, B12 midrange. - Pernicious Anaemi...

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Low Ferritin, B12 midrange.

yikes3 profile image
8 Replies

My ferritin level fell down recently for no known reason. it's 33 and needs to be 50 or above. I have restless legs. That's why doctor checked it. I've been getting B12 monthly injections for about a year now and I am mid range of normal. I have neuropathy. It made little to no difference to me to have the b12 shots for neuropathy. The shots did give me a zip of energy for a few days though. My doctor refuses to give me more. Where can I buy them over the counter? I live in Wisconsin USA.

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yikes3
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Galixie profile image
Galixie

Unfortunately, in the USA, injectable B12 is not available without a prescription.

I've looked into what it would take to change that, and it would either require a boatload of money and a bunch of research that doesn't exist, or convincing an existing manufacturer to jump through the government's hoops to request a change to their product labeling which would allow for over the counter sale (and sale of syringes without a prescription is a separate battle altogether). Neither is likely to happen because there isn't enough interest in doing more research and the one company left in the USA that still makes cyanocobalamin is still rebounding from manufacturing issues it had several years ago that caused a shortage.

You can order B12 online. I've done that before. In fact one place I ordered from was located in Florida. They got around the prescription requirement by having what amounted to a staff doctor who would issue the prescriptions at the time of the order. It's also legal to travel to Canada and buy it over the counter there. US customs allows you to bring back up to 50 doses of a medicine sold over-the-counter in Canada without a prescription needed. A lot of the border agents aren't too familiar with that part of the law and you're likely to get hassled, especially about the syringes. Printing out the portion of the US customs website and bringing it with you can be helpful. (Make sure it includes the web address on it so the agent can look it up for themselves.) But, if you decide to make the trek up to Canada, call ahead to make sure the pharmacy you're going to has some in stock.

The downside of ordering online is that you can never be entirely sure of where it's coming from. I once ordered some B12 online that claimed it was from 'Sunshine Labs' in California. It turned out to be from the Dominican Republic. I don't think there was anything actually dangerous about it, but the FDA did issue a recall because the vials were all labeled as having been made in the US.

Do get your falling iron looked into. If it hasn't been done already, ask for a full iron panel. If you've become anemic, it is important that the cause of the anemia be found and corrected.

yikes3 profile image
yikes3 in reply to Galixie

I had an iron level and ferritin level check. Period.

There is more to it?

in reply to yikes3

Hi, have a look at the Johns Hopkins site on Restless Legs - it's very good. They take - from memory - people up to 100 on their serum ferritin. This is because the evidence points to low brain iron being at the root of Restless Legs Syndrome. Not that it is easy to raise brain iron - it seems to be an incredibly slow process, and the brain seems to get iron after every other organ has had its share.

One woman on the forum reported that her serum ferritin went up to 130 before her RLS went. Of course, it's not a magic cure. It doesn't work for everyone, and the docs don't know why. But you should definitely get your ferritin up, and I think a lot higher than 50 - but read what Johns Hopkins says and make up your own mind.

yikes3 profile image
yikes3 in reply to

I am unable to know specifically what you want me to read. Can you tell me plainly please? =)

in reply to yikes3

Just go onto a search engine, enter Johns Hopkins Restless Legs Syndrome and the first site to come up will be the one. Then navigate around (it is very user friendly) reading the information - try the "more information" and "research" and "symptoms" buttons.

Galixie profile image
Galixie in reply to yikes3

Yes. There can be different causes of anemia due to low iron because iron can be low in more than one way. It's also really important to find out the cause of iron deficiency because it can be pointing to some form of internal bleeding, such as from an ulcer, which should really be addressed along with raising your iron levels. Otherwise the problem with simply keep reoccurring (or worsen and cause much more serious illness).

yikes3 profile image
yikes3 in reply to Galixie

I think that it's an ulcer.. my stomach 's been hurting me so bad lately.. I can't deal with the pain. I can't eat,. drink or sleep decent with it's always feeling like it's a severe backache - stomachache

yikes3 profile image
yikes3

Thank you very much for such specific replies. The replies are better than the ones that my own doctor gave to me. Not only is the ferritin level down but so is the potassium level. IT's down to 3.4 - it's fluctuating a lot between 3.4-4.6 but is almost always on the low end so we are watching it so closely. I feel sickish right now. I never throw up actually I just feel very worn down and tired. I can't seem to sleep though. I lay awake with restless legs. I am medicating more so right now, today so sleep will find me. (I hope)

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