Forum has been source of sanity in my B12 mystery journey

[Sunvalley12]

It's obvious we're becoming the experts by researching everything--while in distress I might add, so hard. I feel for everyone's suffering at the hands of unknowledgeable and dismissive providers. My first serum test was 158 treated orally (finding out for myself there's synthetic cyanocobalamin and methylcobalamin which I switched to). Two months later serum was up to 1,448 so they told me to drop oral daily dose to once per week. Big mistake. Three months later my parasthesia came back with added extreme fatigue, leg aches, hot flashes/sweating. I wasn't connecting the dots thinking this was flu-like. They did EMG test for large fiber neuropathy which was normal. My serum test was now at 442 but had added GI distress which was really crushing, no appetite, losing weight. Folate normal at 11.6. B6 low at 7, they never addressed that or said that could cause neuropathy; I've since started taking B Complex vitamin. They did MMA test which came back normal so they said it's absorbing. I'm not convinced. Did pelvic ultrasound which was normal to rule out anything uterine/ovarian due to my abdominal complaints, and I really don't think this is of GI origin. I don't want to go down road of endoscopy/colonscopy; I can't handle that prep anyway. I'll do Cologuard if needed. "Skin crawling" recently started which I hadn't heard of before (feels like a worm moving under skin), dry mouth/eyes (SSA, SSB <0.2 so I wouldn't have Lupus or Sjogren's). Complained out of desperation and by good fortune saw a different nurse who was compassionate, devised a plan to start me with Integrative Medicine to treat my whole body; scheduled brain MRI to rule out more scary stuff. She also thought B12 shot could help me regardless of my serum results. Nurse prior balked and told me to take a Tums or Prilosec acid blocker, to which I thought, hell no! Why would I wipe out stomach acid needed to absorb B12. In the midst of this latest flare up, I had a preliminary consult with a Naturopath (outside my traditional provider, I'm in the US. You pay directly as it's not typically insured; fine with me at this point, I need more help). She's running many more tests my traditional provider didn't like homocysteine. She'll look at hormone issues too. Apologies, this is difficult to summarize but maybe a part will help someone.

Best news, I believe my injection from yesterday is working as most symptoms abated. What I don't know is the frequency my body might need, or the "loading" people have mentioned. I could cry at the relief, I feel like I may get my life back!! It's hard to convey the distress and suffering this deficiency brings and the strength needed to keep fighting. Please keeping posting everyone.

[Nackapan]

The loading doses in the UK is 6 b12 IM injections over 2 weeks

.Every other day should continue if neurological symptoms.

I had a brain Mri scan then another s year later including neck. .

Their terminology ....nothing sinister found.

Thd report did show T2 flares and some white lesions .

Cerebellum damage going by symptoms .

I wax offered many medications mainly to calm my nervous system down. .

My bloods showed heightened inflammation in my body.

I presently am left with a vestibular disorder .

I'm improving over the years now.

All I have is regular b12 injections 💉and vits abd minerals now .

Your symptoms are familiar.

The restless legs and crawling skin for me was low ferritin.

I'm left with very dry skin and a sore sensitive scalp.

I saw a dermatologist recently.

I was asked if I moisturised .

No possible reasons given.

No remedies for treating.

A non event.

Still dumbfounded.

He did say if I saw a neurologist amytripyline woukd be prescribed.

A neurologist did . 3 actually. 5 yesrs ago .

Round and round .

Hope the b12 injections continue to work and you get more relief.

Keep posting .

Keep as well as possible .

[Sunvalley12 in reply to Nackapan]

Thank you for that information and your story! I will contact my naturopath to get a routine going. I want to keep improvement I've gained. Hoping I can gain weight back.

[Technoid in reply to Sunvalley12]

Hi Sunvalley12, welcome to the forum!

Would recommend steering well clear of (not a medical doctor) Eric Berg. He's popular for sure, but often (as in this case) popularity is in inverse proportion to the quality of knowledge conveyed. He puts out some of the most poorly informed nutritional advice to be found on the internet. Some alternatives in my profile if interested.

[Sunvalley12 in reply to Technoid]

Oh I’m so sorry I didn’t think of that. I edited my reply, thanks for the reminder.

[Technoid in reply to Sunvalley12]

no worries. I watched a lot of Eric Berg in my early treatment days. It takes a while to sort the wheat from the chaff and he has a knack for sounding like he knows what he's talking about even when he doesn't.

[Nackapan in reply to Sunvalley12]

I lost over a stone I couldnt afford to lose at the time. Took 8m to get back to where I started weight wise.

Had poor muscle tone too as bedbound for a while.

I've now put on too much weight fir the first time in my life . 6 years on

No idea why .

Age

Metabolism slowed

Debilitating fatigue so can't exercuse as I once could.

Who knows .

My focus is trying to get on with life .

[B12life]

Credit to you for having the fortitude to keep at it! This deficiency taught me what self love is. We have to realize that when we have a health issue the most important thing is to find the cause and solution that gets us back to good health and in the meantime be good to ourselves by lowering the demands we put on ourselves.

As for nutrition, I really like Chris Masterjohn as a resource.

[Technoid in reply to B12life]

Masterjohn is an interesting character that I looked into some time back. He seems to promote diets high in animal foods and saturated fats and seems generally confused about most things related to nutrition and especially cholesterol. Here's a 2005 article he wrote thats quite illustrative of where he is coming from:

web.archive.org/web/2019032...

[Sunvalley12]

I really appreciate those caring suggestions! I need to take them to heart and consider my work. My first injection seems to be wearing off after a day and a half. I’m going to get another injection administered today from a place I found open, and see how my body responds. I’m winging this as it’s the weekend. I’ve gotten familiar with the neuropathy but the GI issues seem scary to me. I’m worried of a root cause other than aging. Thanks for letting me vent my anxiety here.

[B12again]

From what I’m reading your injections are very infrequent. If you get relief from them I was wondering why not more frequently? My B12 reference range was 158 and was ignored for 5 years. My health crashed last year with all the usual symptoms, neurological, cognitive and fatigue etc, as we are all aware it robs us of life. I pushed for B12 to be investigated as a more recent test was 162 and so was started with the 6 loading injections of B12 (hydroxocobalamin in the UK). After the 4th jab my symptoms began improving. I was then put on a jab every 3 months but symptoms returned after 2 weeks so was definitely not frequent enough. With help from forums like this and some coming and going to the doctors and no success in getting more regular jabs I started to self inject (SI) and I’ve not looked back. I SI every other day (EOD) with 1mg/1ml of B12, along with cofactors of combined vitamin D3+K2 5000IU daily, Gentle Iron 20mg daily, methylfolate 5mg weekly and recently magnesium 400mg daily as powder mixed with kefir. The magnesium has been a great boost for me. It contains a combination of 3 of the most bioavailable minerals. So after a journey of trial and error I am now living my life again, especially being able to go fishing again. 🙂 As with most on here, I source my vitamin ampoules from a German pharmacy where they sell it over the counter. We purchase it quite legally. In the UK it is prescription only. It’s not at all expensive. So be encouraged, keep advocating for your own health as there is a massive knowledge deficit, were B12 deficiency is concerned, within the medical profession worldwide.

[Sunvalley12]

Fantastic info, thank you! I will keep re-reading it. To better clarify, I’ve only ever had an injection once, just two days ago at my insistence to at least try it. (Provider under impression I’m absorbing because my MMA test was normal.) Naturopath ordered homocysteine test and other bloodwork not done by traditional provider, now awaiting for results. I’m new to all this. Glad you have your life back and fishing!!! This condition makes one feel desperate. Good to hear of hope.

[B12again in reply to Sunvalley12]

A book that you will learn lots from is by a Dr Chandy who was a GP doctor in the North East of England. He retired in 2015. Amongst his patients, folk on this forum and elsewhere he is a well respected and informed doctor (now deceased Dec 2023). Over 30 years he became expert in the diagnosis and treatment of B12 Deficiency (B12D), his patients mantra was ‘he gave me back my life’. He kept meticulous records of his dealings with his B12D patients which he has turned into a book (almost more like a teaching manual), it also contains case studies. It is called ‘Dr Chandy Vitamin B12 Deficiency In Clinical Practice’. You can get the book from Amazon, Uk price is just over £6/$8. Or, you can read/download it at b12d.org/book/. The website itself contains much info and exists as part of the charity which Dr Chandy set up. Hope it helps.

[Sunvalley12 in reply to B12again]

Thank you so much I will order it! Such kindness 🥰 I must say this challenge has become like a full time job. Our health is everything, I appreciate your post!

[Hockey_player]

It is good to first start with every other day injections. Then when you feel really good, try spacing them out. You want to find a frequency where the symptoms do not come back. I get tingly toes in 3 weeks so I inject once per week.

[Sunvalley12 in reply to Hockey_player]

Ok good to know! I appreciate that and think others here have said similar. I just had my second injection today on Sunday, since Friday. I was able to buy 3 additional doses to SI—because they (an IV spa place) otherwise would make me wait 3 days between if they administered.

Is it typical to feel improvement quite quickly, an hour or so? I don’t think it’s just wishful thinking? I must say I get paranoid of symptoms returning.

[Sleepybunny]

Hi,

A few links that you might find interesting.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has overseas members.

pernicious-anaemia-society....

There are PAS support groups in US.

pernicious-anaemia-society....

B12info.com

b12info.com/

B12 Awareness (US website)

b12awareness.org/

Stitchting B12 Tekort (Dutch B12 website with English articles)

stichtingb12tekort.nl/english/

Two useful B12 books

Published a few years ago so some bits might need updating.

Could It Be B12?: An Epidemic of Misdiagnoses by Sally Pacholok and J.J. Stuart (US authors).

Very comprehensive. Lots of case histories.

What You need to Know about Pernicious Anaemia and Vitamin B12 deficiency

by Martyn Hooper, former chair of PAS (Pernicious Anaemia Society)

Films/videos about PA and B12 deficiency

pernicious-anaemia-society....

b12info.com/films/

I'm not medically trained.

[Sleepybunny in reply to Sleepybunny]

There are other US forum members here. Might be worth searching "Posts" with terms "US/USA/America" to find them.

I think   EllaNore is from US and posts quite often.

[Sunvalley12 in reply to Sleepybunny]

Thank you for that tip Sleepybunny! In my foggy state I had somehow landed here and didn’t search further or realize there was a US thread. I sincerely appreciate your post and links provided.

[Sleepybunny in reply to Sunvalley12]

I think most people on PAS forum are from UK (including myself) but there are plenty from US and others from across world.

Click on "Posts" tab at top left of screen if on computer. This should bring up a search box on right.

Sally Pacholok, the author of "Could it Be B12" book has some online videos and articles about B12 deficiency.

I also found a few articles when I searched "USA guidelines B12 deficiency".

Help for doctors

Do your doctors know about Club B12?

This is a group of doctors and researchers across the world who are looking into B12.

They have regular zoom meetings and had a recent symposium on B12 in UK.

club-12.org/

Pernicious Anaemia Society website has a page for health professionals. They can join PAS as Healthcare affiliate members - no charge. Members from overseas are welcome.

pernicious-anaemia-society....

If you search online for "B12 deficiency Wolfenbuttel" it should bring up some interesting articles including one from Mayo Clinic that might be worth passing to your doctors.

[Sunvalley12 in reply to Sleepybunny]

Since you’re online can I ask a general question on injections in the beginning? Can symptoms like neuropathy and GI complaints go away for 24 hours after injecting then creep back again before next injection? Then after SI on day 3, my symptoms lessened again but partially came back during day. Can this be typical in the beginning? So confused if injections are working or not. It’s a moving target whether it’s my stomach or neuropathy that bothers me more, or both at same time is the worst! I only know I’ve had low b12 no official PA. Asking here as I know my provider will be clueless. Thank you.

[Sleepybunny in reply to Sunvalley12]

Hi,

Might be worth posting this question as a new thread.

I'm not sure.....we're all different .... what works for one person here doesn't always work for another.

I think many other forum members experience symptoms creeping back before next injection....I do.

Have you considered keeping a symptoms diary, maybe track up to ten symptoms and score severity daily or weekly.

It's difficult in UK to get enough B12 from NHS so many UK forum members resort to treating themselves.

"I only know I’ve had low b12 no official PA"

Causes and Risk Factors for PA and B12 deficiency

If it's not due to diet/medication then I'd expect a doctor to look at conditions that affect absorption of B12 in the gut. I'd expect them to at least test for PA (Pernicious Anaemia) and Coeliac disease.

pernicious-anaemia-society....

b12info.com/whos-at-risk/

b12info.com/causes/

theb12society.com/causes-an...

I'm not medically trained just someone who suffered for years from unrecognised and untreated B12 deficiency.

[B12again in reply to Sunvalley12]

It is not uncommon to feel uncertain about whether vitamin B12 injections are working, especially during the early stages of treatment for deficiency. In your case, the improvement in symptoms after an injection followed by a return of discomfort can happen for several reasons, and it’s a nuanced process.

Short-term Symptom Fluctuation

B12 injections can initially lead to temporary relief in symptoms like neuropathy (numbness, tingling) or gastrointestinal issues. Some individuals experience a rapid improvement in energy levels and a reduction in neurological symptoms within 24–72 hours after an injection, but this effect may not last consistently early on. The quick response may be due to the immediate availability of B12 for nerve repair, but since nerve damage (such as that from neuropathy) takes time to heal, fluctuations are expected.

perniciousanemia.org/b12/in...

In some cases, symptoms may re-emerge before the next injection as B12 levels dip. The body may be adjusting, particularly if the damage from deficiency was extensive. It is also possible that neuropathic symptoms can worsen temporarily as the nerves begin to regenerate, a phenomenon sometimes referred to as “reawakening (US) or reversing out (UK)” of nerves . This can make it feel like a “moving target,” where some days your GI issues are more prominent, and other days, your neuropathy symptoms stand out.

Neuropathy and Gastrointestinal Complaints

Both nerve-related symptoms (like tingling, pain, and numbness) and gastrointestinal issues (such as nausea or abdominal discomfort) can be tied to B12 deficiency. B12 helps maintain the health of the nervous system and is also essential for proper red blood cell production, which affects overall energy and digestion . The overlap in these symptoms can make it hard to distinguish whether it’s your neuropathy or GI complaints causing more discomfort at any given moment.

What to Expect

Treatment with B12 injections is often effective, but nerve repair is a slow process. Full nerve healing can take months or even 2 or more years, so it’s important to remain patient. Generally, it takes at least 90 days for the complete replacement of red blood cells, and this timeline applies to gradual improvement in energy, neuropathy, and possibly even gastrointestinal symptoms .

In the U.S., where B12 deficiency is sometimes linked to conditions like gastritis, pernicious anaemia, or digestive diseases that reduce absorption, treatment usually involves either injections or daily oral supplements if dietary related eg vegans. If you have only had low B12 levels without a confirmed diagnosis of pernicious anemia, the course of treatment may vary, but consistent injections are typically recommended until levels stabilise.

In summary, your experience of fluctuating symptoms, improvement after injections, and temporary worsening is not unusual. It’s best to keep consistent with your treatment and consult your provider for personalised advice, even if they are unfamiliar with your nuanced experience. If needed, you could request referral to a specialist for further guidance.

You will find the following video on YouTube very informative, an American documentary that highlights the seriousness of B12 deficiency and the knowledge deficit that exists around the world but especially in the west.

youtu.be/QqjyAeOLyKM(Not working as expected?)

[Sunvalley12 in reply to B12again]

Dear B12again! My goodness how you read my mind in questions I’ve wanted to ask but didn’t know how to phrase regarding—reawakening or reversing. New terms to me! And the “moving target” I’ve described to people!! It is truly crazy making. I have been particularly confused at these sensations and if I’m improving or just not addressing another problem that shouldn’t be ignored. Patience has not been my virtue so thank you for that encouragement. Perhaps I can start to relax and trust the process and stop thinking worst case. I plan to keep re-reading your reply as you provided much insight. I sincerely thank you from the bottom of my heart for taking the time to compose your reply, as have others. 🌼

[EllaNore in reply to Sunvalley12]

Hi Sunvalley12. This is the best thread and form to come to for help with pernicious anemia you found the right place. I am from the US. If there's anything I can do for you I will do my best. I didn't read all the responses, but did you have an upper GI to look at the mucosa of your tummy? Also an I FAB test? That is an intrinsic factor test. But if you started b12 injections it could possibly come back false positive or false negative. But looking at the mucosa and testing your parietal Cells would be a huge help.

I don't know you're medical history. If you're a vegan, or took metformin or omeprozol for external times, or why you could have B12d/pa. You can simply be born with it too.

I have extreme dry mouth, eyes, thick mucus. So thick I have to pulling out of my throat because I can't cough it out. My nose makes so much mucus it is a real issue. My lungs are thick with it. They thought I had sjogrens them not, but I do have thick blood and they have to test me again in 12 weeks and start me on thinners. I think that will help with extreme fatigue in my case. The dry mouth is affectng my teeth. I suck on candy to keep it moist, I use a rinse but nothing helps me. It is miserable.

If you're b12 was low they should have ran an MMA, HOMOCYSTEINE, MCH, MPV, ANCA, P-ANCA, they need to run a test to see if your blood is too thick. It's called Beta-2 Glycoprotein 1 IgG and Beta-2 Glycoprotein 1 IgM

My IgM is >55.7 it is supposed to be<20 so my blood is thick. It mashes it very hard to breath and get around. In extremely fatigued. Scared of a stroke or clot.

If the b12 is helping you then it would stand to reason you need more. Mist og us inject daily but we are all different. I need it every day. And even that doesn't seem enough.

I think you need an upper GI to look at your gut to see if you have parietal cell antibodies. If you do, then chances are you can't make Intrinsic factor, which is a protein that b12 needs to bind to to be carried to the lower ilium to be absorbed. That process is broken for PA sufferers.

Anyway, if I can be of help, you can message me anytime. I'm in Iowa.

I'm no doctor, but I think my thick blood and mucus are related but can't get anyone to confirm that. They simply don't know yet.

Good luck

[Sunvalley12 in reply to EllaNore]

Thank you EllaNore for your kind and helpful reply! You’re so generous. I’m originally from MN so I understand IA 😀Yes traditional provider checked MMA which was normal also negative for celiac. Testing for H. Pylori. My naturopath I just met with is testing for homocysteine, but I’m unfamiliar and haven’t looked up these others you mention, MCH, MPV, ANCA, P-ANCA. Maybe they’re included in a complete blood panel already done, I can check. I also haven’t looked up parietal cell antibodies, or have forgotten among my chaos of juggling my symptoms. I do clean eating and am not vegan or vegetarian and on zero medication—which makes this more puzzling. My thyroid tests are normal.

I was desperate and went to naturopath while waiting on traditional provider who was just looking at big stuff and not listening, I was too unwell then to advocate well! EMR for large fiber neuropathy was negative. My gastric discomfort only appeared on the scene 2 weeks ago, before that it was the neuropathy, sweats, achiness. It’s a moving target daily! MRI next Monday. If that reveals nothing awful, they said GI tests would be next—like you’ve said. I assume endoscopy which makes me anxious even if partially sedated. Thanks for any insight. This forum is a saving grace.

[EllaNore in reply to Sunvalley12]

You're very welcome. The Homosystein test as well as ANA ANCA pANCA are all about autoimmune conditions. If you aren't a vegetarian, and you don't take meds, then it would point to autoimmune B12d. I think it would be wise to see a GI ASAP, as they can check your parietal cells. If those are damaged or have antibodies, then that would be a positive indication of PA. The other tests would help verify everything.I just worry if your taking high dose b12 or injecting, it could falsify test results. But if you're parietal cells are damaged, it would be very likely you have PA and need correct B12 treatment. Good luck