B12 Deficiency

[LilliRaindrop]

I just found out that I’m B12 deficient. She said it was so low it couldn’t be detected. Weekly injections for 3 months. First injection was Thursday, I can’t stop crying on top of no energy. I’m 39 and have 4 kids and didn’t even cry this much while pregnant. My dr was out today and the nurse didn’t call me back. This is a long shot but any suggestions? I’m feeling a little crazy. I have not been diagnosed with anything else. I’m also being treated in the United States.

[Foggyme Administrator]

Hi LilliRaindrop. It would be useful for forum member if you could let us know which country you live in since treatment guidelines for B12 deficency can vary depending on where you live.

For now (and to be very brief because it's late), if you are in the UK, then you are not being treated according to the guidelines: you are being under-treated and need much more frequent B12 injections (this is very important if you have neurolgical symptoms).

It would also be useful to know if you have been diagnosed with Perniciuous anaemia (one of the causes of B12 deficiency) or some other cause.

Really sorry that you're feeling so terrible at the moment...if you can leave the extra information, folks here will be better able to offer advice and help...and take heart, symptoms do sometimes get worse before they get better...so things will improve (once you are getting the right amount of B12).

And most of us here know only to well that feeling a little crazy thing...😖😉.

👍

P.s. You can add to your post via the edit function - click the down arrow box at the bottom of your post and this will give you an edit option - click this and you can then add text to,your original post.

[LilliRaindrop in reply to Foggyme]

Thanks. I guess I assumed it said where I was located.

[LilliRaindrop in reply to Foggyme]

😊😊😊

[pvanderaa]

In the US, we get cyano-b12 injections on a monthly basis. The other types are hydroxo-B12 in the UK on 3-month cycle. There are also methyl-b12, which I’ve purchased whike travelling in Saudi Arabia. And finally Adenosyl-b12.

Cyano is the most stable and least expensive.

Hydroxo is next and it stores longer in the muscle. It and cyano are called “analogues” because the body needs to convert then into methy or adenosyl to use them.

Methyl and adendosyl are the most active, least stable and most expensive.

Everyone seems the find that the “normal” regime of injections is insufficient and symptoms return well before the next injection is due.

To work properly, B12 needs the support of folate (folic acid supplements) and a daily multivitamin vitamin but it is essential to get the B12 level right first as folic acid can mask the B12 deficiency.

[LilliRaindrop]

Thanks, all you guys in this group are so informative. This is something I honestly knew nothing about and I’m getting more information from here than from my physician. Kinda scary. I go back Thursday for my weekly shot. I also wasn’t aware that there Is so much and different kinds of B12 and functions they provide. Thanks again. 😊

[KimberinUS in reply to LilliRaindrop]

Welcome. You have found the right place. I have read the label on our cyano injections and it says the kidneys filter out most of the b12 within 48 hours.

drugs.com/pro/b-12-complian...

In the UK they are given loading doses of 2 weeks of every other day injections. I assume this is because the kidneys filter out the unused portion in 2 days.

Additionally, i have read that getting b12 very high, above test range, is needed to cause repair to nervous system.

If you are having issue such as, forgetting things, bumping into walls with your shoulders or legs, hands and/or feet falling asleep or tingling, difficulty comprehending or processing information (brain fog)...these are called neurological symptoms that require longer loading doses, every other day until no further improvment which can be months or up to a year.

I was desperately looking forward to having energy when i got my first (weekly) injection. Instead i fell asleep, for 3 1/2 hours. I found that some people do respond this way after injections as our body finally gets what it needs to repair itself.

I hope your doctor tested folate, usually high in US folks due to fortification of lots of our foods, cereals, pastas, flour, ect. But your post says you have been crying and a folate deficiency is known for causing depression. You also need a full iron panel.

The reason for these two additional tests is because, b12, folate and iron ALL work together in a process called methylation. If you are getting b12 injections but are low in folate or iron, your body cant repair itself properly.

Please know you will feel better soon. It took about 6 to 8 weekly cyano injections before i felt better, not 100%, but way better.

If i had to do it over, i would get 2 injections a week for 3 or 4 weeks and then move to weekly for a month or 2, then bi weekly for 3-4 months, before finally changing to monthly.

There are several "root causes" for a b12 deficiency, which you can read about on numerous posts. I had h pylori with zero stomach pain or heartburn. I only had nausea and lack of appetite.

When you are feeling better, you and your doctor can test for these causes.

If your doctor/the nurse doesnt call you back, i get injections from a weight loss clinic. You need to ask them if they offer straight b12 injections because we arent looking for the weight loss injections so many of them offer. My place charges $15 per injection.

My suggestion is to get your doctor to test folate and full iron panel. Then start taking a good multivitamin. I would start eating foods high in potassium (potatoes, bananas, coconut water) and taking 200 mg of magnesium (considered the calming nutrient) and increase it to 300 mg with time as too much magnesium at one time can cause diarreah. If diarreah is a conceen you can soak in an epsom salt or dead sea salt bath (use a full 2 cups or more) for 40 mins to an hour. These baths (lots of magnesium) relieved my aching joints, relieved anxiety and helped me sleep more restfully.

Best of luck and health

Kimber

Savannah, GA

[LilliRaindrop in reply to KimberinUS]

Thanks, this is a lot of useful information. I’m kinda relieved I have stumbled upon this site. I’m not being tested for the cause as of yet. She started me on the weekly shots and in 3 months I go back for an actual visit. From what I’m reading that’s not going to do any good. Yes, I have neurological symptoms (I have been ignoring them thinking I’m about to hit menopause) I passed out in July 2018 fell landed on my foot which required surgery and me basically not moving around too for 7 months I was under the care of a ortho surgeon and just now went back to my GP which is new to me so I have stumped her. But I’m also gathering the way I’m being treated just the deficiency no cause she’s trying to get it up by weekly injections for 3 months and then appointment. I guess I’m going to have to be pushy with this. Bc those treatments aren’t going to help me right now since they were that low to begin with. 😐

[designer8]

Hi LilliRaindrop - I was happily going along with my weekly injections from October 2017 until late February this year when my new GP (soon to be ex-GP) wanted me to stop until I had symptoms again so she could test me for PA without the B12 being high (??). Reluctantly, I did this (kicking myself now, because now I'm a member here and know better) and sure enough, five weeks later, back came the symptoms - confusion, dizziness/lightheadedness, paranoia, anxiety, depression, etc. etc.

As soon as the symptoms started and I'd had my blood test the same day, I started back on the shots - once a week. They didn't work. I was devastated. I self inject (via my husband) and since late March I've had to up the dose significantly because the symptoms wouldn't reduce - not like they did last year when first diagnosed. I then began injecting every other day, but still not a lot of improvement. So, this past week I've been injecting every day, and every day the symptoms have been reducing and reducing. Not too bad today. I was a little hesitant to have it every day but reading some of the members' comments (member Gambit62 for example) made me feel better about it and I know it's helped me having it every day.

Everyone's different - clearly - that's why some of us need B12 injections and some don't. Some of us need more of it, more often than others. I can't even imagine going three months.

Take care (and control ) xx

Oh! I've also started on folate. Amazingly, no GP had tested me for it since July 2017 (five bloods done since then). They really know nothing about this and clearly don't want to learn. They will when they themselves start getting symptoms similar to their patients.

[LilliRaindrop in reply to designer8]

i completely agree they don’t seem to concerned or willing to learn about this. This site has been more helpful than my stumped dr. She’s new to me, but I’m gathering she should be taking this a bit more seriously. I’m going to make her knowledgeable. Or try. I’ve only had one injection and went to sleep. Thanks for your story and your information. 😊 good to know. It may take some time but we will all feel much better soon. Hopeful.

[clivealive Forum Support]

Hi LilliRaindrop you've been given lots of good and helpful advice above but please be assured there is life after B12 deficiency and I'm still "clivealive" after having had P.A for 46 years

I would like to repeat the advice that KimberinUS mentioned "to get your doctor to test folate and full iron panel."

Replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Hb. Both iron and folate may be needed.

I wish you well

[LilliRaindrop in reply to clivealive]

Thanks.

[LilliRaindrop in reply to clivealive]

I actually have an appointment Thursday (not just a shot) I am definitely using all this advise and will go from there. 😊

[Gambit62 Administrator]

B12 is used in a considerable number of the processes that go on in your cells so the effects of a B12 deficiency are very wide-ranging.

Would be a good idea to make a list of everything and then monitor what changes over time

pernicious-anaemia-society....

some processes just need enough B12 to start running again - with others there will have been damage whilst you were deficient and that can take a while to heal - eg if you have macrocytic anaemia it will take a few months to heal.

It may be that you need to keep B12 levels very high now- I need mine well over the top of the measurable range - I do this through a mixture of sublinguals (adenosyl), nasal sprays (methyl and hydroxo) and self injecting (hydroxo or cyano depending on which button I press when I am purchasing from a German pharmacy). With the potential exception of injectable B12, the other forms are generally not covered by prescription but because you have an absorption problem you do need to take very high doses - 1000mcg+ on a daily basis - if you aren't using injections. Its unlikely to help raise your levels but it can keep levels steady. It doesn't work for everyone though.

Some people find that one form of B12 suits them better than another - personally I find that different forms (cyano/hydrox/methyl/adenosyl) work best for particular symptoms - hence the cocktail. Some people also find that a particular form doesn't suit them at all.

It may be worth speaking to your doctor to see if they would allow you to have more frequent injections to see if that helps - particularly given how low your initial levels were (that's about keeping your levels really high). It may be that they are open to this - but generally doctors - even specialists - aren't that clued up on B12, how it works and the fact that many people do need really high levels to function after loading shots.

It's also possible to experience other mineral and vitamin deficiencies in the early stage of B12 treatment - because extra is needed to heel damage - most commonly affected would be folate and potassium (if you had macrocytic anaemia - and if your levels were undetectable I'd be amazed if you hadn't)

Anaemia takes several months to clear - and some people do find that things (eg aches and pains) get a bit worse to start off with.

[Sleepybunny]

Hi,

I am not medically trained, just someone who has spent a long time trying to find reasons for my ill-health.

"I’m also being treated in the United States"

B12 Awareness website (USA website)

b12awareness.org/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.There is also a pediatric version of this book "Could It Be B12? Pediatric Edition: What Every Parent Needs to Know".

There is a film about Sally Pacholok's life, title "Sally Pacholok".

UK B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around world

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

What does your doctor think is causing your low b12?

I'm assuming your doctors have excluded the possibility of diet as a cause. If you are eating plenty of B12 rich foods eg meat, fish, shellfish, dairy, eggs, foods fortified with B12 then diet as a cause becomes less likely and it is more likely that there is an absorption problem. See risk factor links.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for ...

PA (Pernicious Anaemia ...spelt Anemia in US)?

In UK, people with suspected PA are given an Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range. Some doctors may be unaware that it is possible to have Antibody Negative Pernicious Anaemia.

In some countries, a Gastric Parietal Cell Antibodies test is also given.

Blood tests (some info may be UK specific)

b12deficiency.info/b12-test...

Coeliac Disease (spelt Celiac in US)?

UK guidelines suggest anyone with unexplained B12, folate or iron deficiencies should be tested for Coeliac disease.

H Pylori infection?

patient.info/health/dyspeps...

There are other possible causes of B12 deficiency.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

In UK, patients with b12 deficiency with neurological symptoms are supposed to get more intensive treatment than those without neuro symptoms. I'm assuming this is also true in USA. I'm unaware of any national B12 deficiency guidelines in USA but might be worth an internet search.

UK B12 treatment link

BSH Cobalamin and Folate Guidelines

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

It is vital in my opinion to get correct level of treatment or further symptoms may develop.

More B12 info in pinned posts on forum.