4 months of treatment and no better off, is it really PA?

[teebeevee]

I am debating with my doctor whether my neuropsychiatric symptoms are truly the result of Pernicious Anemia (I have tested "abnormal high" for Intrinsic Factor antibodies). After 4 months I am not responding well to B12 treatment (after an initial few months of perceiving improvement), so she seems to winning the argument! Now I don't know what to think/do. Here is my story:

I never had my serum B12 measured because, despite many neurological symptoms like numbness and tingling over the years, I never had true anemia. Then ten months ago -- two days after a "power red" blood donation (which I now know increases demand for B12) -- my mental status abruptly went haywire. Everything became unreal, and I felt anxious, and strange, zapped by electricity all over my body. I told the ER doctor I felt like I was "on a bad acid trip" that wouldn't go away. Over the next month, I had CT scan, MRI, all kinds of tests (everything but B12 it seems), everything was normal except the discovery that I have "hot nodule" on my thyroid, now under control with meds. Over the next few months I got worse, horrible heart palpitations, disoriented, getting lost in time and place, no memory, hearing loss, double vision, dizzy, staggering around, legs giving out. I only hoped whatever I had would kill me quick. Then 4 months ago I turned to vitamin IVs in desperation, and lo and behold it helped! I wasn't sure why. But a few weeks later, I had to have surgery, and suddenly it all got much worse again (nitrous oxide?). Since then I have had many more vitamin IVs and shots several times a week, and again felt a slow but gradual improvement for awhile. Eventually -- after stumbling into this forum in which so many people described symptoms that matched mine exactly -- I narrowed it down to B12 as the magic nutrient. The positive Intrinsic Factor antibodies results seemed to prove it. But over the past little while, despite 2-3x a week methylB12/B Complex injections, I have slid all the way back to where I was, feeling trapped in the 'bad acid trip' of unreality, that internal electric buzzing that drives me mad, vision going blurry again. My doctor is old school, believes neurological symptoms come after the anemia, which I know from reading medical papers is not true, but she seems to think my feeling the vitamins helped was placebo effect, and now even I wonder if I was imagining my improvement.

I know from reading here that one often feels worse before getting better. But is it possible to feel better then backslide to such a degree while still getting plenty of B12? Am I not getting enough, am I getting too much? Am I on the wrong track after all? I take the cofactors I've read about here, folate, potassium, I don't know what else to do. I am in despair, to think I had my answer, and watch it slip away. If anyone else has had a similar two steps forward-two steps back path to recovery, I would love to know...

[Baggy8]

The symptoms you describe hitting in 10 months ago exactly represent mine, in addition to some gastric problems. It took approximately 2 years of hydroxocobalamin injections (and co-factors) and am now 90% the old me. For me the scariest symptoms were definitely the neuropsychiatric.. I have never been anaemic. My current regime of 2 weekly jabs keeps me 'me'. This only increases if I am ill, particularly stressed or drink alcohol.

Thought my experience may be a helpful comparison, not to rule out further investigation.

Take care 😊

[teebeevee in reply to Baggy8]

Oh my gosh, I am so surprised that so many people like you (and me) say they went mentally sideways and yet they do not automatically test for B12 in such cases. I went to the Emergency Room here in the U.S. three times over two months! Kept repeating, "There is something wrong in my brain, it is like I am on some kind of hallucinogenic drug." I was seeing weird, like everything was shimmering, on the verge of melting, and seeing double from each eye. (At least the vision problems have slowly resolved over the last months with B12, I have read that in some people the deficiency hits the optic nerve pretty hard). Waves of weird rippling sensations ran throughout my body. My heart also jumped and and pounded non stop, I'd watch it in fascination on the monitor I was hooked up to (PVCs, tachycardia), the alarm on the monitor kept going off, and they'd calmly come in and turn it off, and then go about their business. Each ER visit they offered me anti-anxiety meds and a sheet for Anxiety Disorder. I don't want drugs, I said, I want to know what's happened to me! If they had just given me that one simple blood test, I could have been saved months of fear, and my insurance company could have saved a ton of money!

[shaylynn in reply to Baggy8]

Can I ask about your gastritis and if it was healed. Did you use HCL?

[Wagonwheel]

Midway through my initial loading doses I felt wonderful my old hill running self. Then 4 days after the last shot I crashed and went from running 7 miles one day to not being able to get out of bed or stop crying the next. This lasted for 2 months until I was able to see a gp who understood, was thankful in fact for the information i passed onto her from this forum.

I’ve been having/SI bidaily shots for 9-10 weeks and I have good days and bad days. I’ve had to accept that I can’t train as I want to because if I do too much I’m wiped out for a few days and the old symptoms, brain fog, breathlessness, flu like symptoms return.

Sometimes this can happen if I’ve forgotten to take a cofactor.

I do feel that I’m getting better but it’s a slow process.

Wishing you well 😊

[teebeevee in reply to Wagonwheel]

Thank you for telling me your experience, it helps to hear that it is not a linear process. Your words "I had to accept..." are especially helpful. I keep thinking I have to find out how to get back to normal me. I knew something wasn't quite right for at least 4 years, had lots of "episodes" of strange mental dips and electric sensations, couldn't hold a pen or fork anymore without my hand going completely numb, but usually returned normal me again after a few days or weeks (I did take supps occasionally, not knowing how much I really needed them!). But this last severe never-ending episode is slowly making me realize that I have to get used to a new normal...

[Hidden in reply to teebeevee]

I have forgot to mention that there are 2 things additionally you have to be careful with. There first one everyone knows, antacids/acid blockers, they reduce vitamin absorption. The second one few people know about, which is fiber supplements such as psyllium husk. This supplement will reduce your absorption of nutrients dramatically.

[Sita505USA in reply to Hidden]

Do you know if that includes Miralax? It is not psyllium.

[Hidden in reply to Sita505USA]

I don't know. Miralax is a chemical laxative while psyllium is a bulk forming laxative. I really don't know but for sure bulk forming laxatives such as fiber supplements will trap all the nutrients in the "bulk" that they form, leading to malnutrition while reliving constipation. It traps your nutrients in a bulk that is easy to pass, no question about it, but over a long term will deplete your nutrients.

[Sita505USA in reply to Hidden]

Thanks for responding!!

[fbirder]

I would try switching from IV methylcobalamin to IM hydroxocobalamin or cyanocobalamin. I would also stop the other IV vitamins.

When you inject B12 intravenously then you get a sudden spike in blood levels. Almost all of that will, very quickly, get filtered out by the kidneys. With an intramuscular dose it seeps into the blood more slowly giving it more time to get stored away in the liver.

Some people have an adverse reaction to methylcobalamin. Few have such reactions with other forms.

You shouldn't need other vitamins - almost certainly not IV. Too much of some vitamins can be as bad as too little. Your positive IF antibody test explains why you need injections of B12. But it won't affect absorption of other vitamins.

[teebeevee in reply to fbirder]

Good advice, thank you! I have had a vial of cyanocobalamin sitting in my bathroom for several weeks now, have been half-afraid to try it, as so many health "experts" are down on synthetic, but I will try it today. I have tried quite a bit of sublingual hydroxo over the past few months, noticed it gives me lots of muscle and joint aches, I have read it can break down into oxalate??

kireports.org/article/S2468...

I gather most people can handle oxalates fine, but I seem not to, a spinach salad has me limping. A low oxalate diet has done wonders for me and joint pain....

[Foggyme Administrator in reply to teebeevee]

Hi Teebeevee. Yes, oxylates can be problematic if levels are high in the body. Number of potential cause...here's a couple...

1) eating diet high in oxylates

2) mega doses of vitamin C (gets converted to oxalate)

3) inborn errors of metabolism (very rare).

High oxylate can cause a number of problems:

1) Gastrointenstinal problems

2) invoke inflammatory response (including in joint)

3) damage connective tissue

4) Renal damage (including kidney stones)

5) cause neurotoxicity

And lots more too.

Some ponderings...

In terms of Hydroxocobalamin and a potential link to high oxylates, as suggested in the paper you link above)...not much detail given so no way to interrogate the findings. However, it's perhaps too reductive to suggest that the oxylates were simply due to high doses of Hydroxocobalamin. Why? In brief...

Patients with burns are also often treated with continuous IV high dose vitamin C...which does get converted to oxalate...

ncbi.nlm.nih.gov/pmc/articl...

So...no definitive evidence to suggest that the high oxalates are due to Hydroxocobalamin itself, rather than another (or other) factors, which are known causatives (for instance mega doses of vitamin C, the critical condition of patients suffering from cyanide poising / burns etc. . So...oxylates...yes, most likely...but due to Hydroxocobalamin...hmm...

Here's information from CHEMM relating to clinical studies in the use of hydroxocobalamin (in IV mega doses - 5mg - 10mg x 2 or three doses) to treat cyanide poisoning:

chemm.nlm.nih.gov/counterme...

The various research papers included identify side effects suffered by a minor number of patients, which could include some of the following:

1) chromaturia (red urine)

2) pink skin discolouration

3) cutaneous rash

4) raised BP

5) transient alteration of renal and hepatic function (consistent with critical condition of patient)

6) mild anaemia consistent with progressive haemodilution (because burns patients treated with high volumes of fluid)

Side effects were found to be transient.

50 years of research has failed to identify any issues relating to the safety of any of the forms of vitamin B12, with no one form of cobalamin being any 'better' or 'natural' than another (though there are individual differences and some get on better with one form of cobalamin than another - and some react badly to methylcobalamin (me included). And some react badly to Hydroxocobalamin (and, oxalates aside, perhaps you're one of those people 😉.)

So, just some ponderings above so that folks don't trot off and worry that injecting hydroxocobalamin (or any form of B12) will cause a problem with oxalates per se.

And having said all that, I'm trying a low oxalate diet to see if it'll help with inflammation and reduce symptoms related to a co-existing autoimmune condition 😉🙃.

Good luck with the cobalamins 👍

[blue2323]

I had the exact same symptoms as you are describing, I'm 4 months in and still struggling, but much improved from where I was. The same thing happened to me 2 years ago. I ended up on b12 for another reason and never put 2 and 2 together that that was why I got better. I'm still not 100% sure what's going on with me but I believe I have nerve damage in my neck and spine that are causing swelling in my brain as well. I discovered that if I push on the back of my head all of my symptoms flare like crazy like I was poked in the brain with a cattle prod. Does this happen to you? I found that icing my neck three or four times a day keeps my symptoms at bay, but I still have a lot of questions and there's a lot that I haven't figured out. I see the neurologist on Friday and I'm hoping he will be able to figure things out further. It is possible that you have other deficiencies going on too. Is your diet restricted at all? Have you had any stomach surgery or anything? What keeps me going is that 2 years ago when this happened I got better and all my symptoms went away. So I believe that can happen again, it just might take time. I think my myelin sheath needs time to repair and maybe that's the case for you too? But I would definitely get in to see a neurologist and don't give up on finding answers.

[teebeevee in reply to blue2323]

Hi blue -- I can't imagine having that odd swelling on top of everything else, I am sorry to hear that. No I don't have that particular symptom, but seems nerve damage can do crazy things. When I am lying down especially I feel "lost," I can't explain it exactly, like I am drifting through space. I had a real problem with not being able to feel the ground when I walked, like I was floating across it. This is why I tell my doctors I feel like I have been stuck in a bad LSD trip. But just writing about it now makes me realize I have improved perhaps more than I thought, it's been over a month since I felt that.... I wish you luck with your crazy symptom, a cattle prod sounds wretched!

[blue2323 in reply to teebeevee]

thanks! Yes, progress is slow to where we maybe don't see how far we've come. 2 years ago the first time this happened, I fully recovered and it took like 6 months, although like I said I don't have the exact time line. There is definitely hope! Hang in there and don't give up looking for the answers!

[Baggy8 in reply to teebeevee]

Wow! That's hit a memory! When I was repeatedly asking my GP to send me for treatment for the dementia I believed I had, I mentioned the floating and falling and disassociation symptoms I experienced.. He advised that all was due to my stress levels and offered anti depressants - which I refused! This was at least a year before all of my different symptoms (which no-one had connected) made sense. This was following a random blood test which identified my low B12.. Interesting....

[Ritchie1268 in reply to teebeevee]

Hi teebeevee.

So very sorry to here how very badly you've been suffering, can only imagine what you've been going through!!

After years of struggling with Degenerative Disc Desease in my back & neck, I put the problems with my legs & other symptoms down to nerve damage caused by my discs being, according to the consultant; "jagged edges with all the fluid gone, trapping nerves" so just tried to get on with things.

Then the vision starting to play up, depression, anxiety, (I used to be an Operations Manager dealing with people daily so anxiety was never an issue with me). Feet hurting & burning plus other stuff.

My Dr, after trying me on 3 different types of antidepressants which I stopped taking as none worked, gave me a full blood count.

He then said it showed I was folate, B12 defficent & had Pernicious Anemia.

I had never heard of this before.

I had my loading doses around April, my first of every 3 months injection in July, one week after this, I felt the best I'd felt for many many years for 4-5 days, then it all flared up again. I struggled along till a week after my next injection on October 29th, again, I felt great but for a few days only, now I'm back to where I was!!

I hear what you say with 2 steps forward 2 steps back!

I can only thank the people on here, the likes of fbirder & especially Wedgewood for explaining & giving me amazing advise that all GP's should be doing!

I've tried to get B12 injections more often but, like so many sufferers in the UK, it's a no.

So I took advise from here & on Saturday received 100 ampules of Hydroxocobalamin from Germany, my needles will be here today so today is the first day of starting my self injecting.

I hate needles & cannot watch someone injecting but, I hate feeling how I feel so very much more, so I'm gonna man up & get on with it, just so I hope I can feel "Normal" again on a more regular basis other than 5 days in every 3 months!!

Go on YouTube & search for this video.

"Diagnosing and Treating vitamin B12 deficiency"

It's an amazing video, very informative but also very scary as to just how many serious problems B12 deficiency can cause if not picked up!

Good luck & I hope you get the help you need soon!

Take care

Ritchie

[dcason]

If you are IFa+, you have PA, period. You will need B12 for the rest of your life and without it, things will go very badly indeed. As to how many of your symptoms it has caused or whether there's some co-illness, it's almost impossible to say. But your PA sounds like it was pretty advanced before discovery, as was mine. It was a solid year of treatment (twice a week sub-q injections with a specially compounded mix) before I saw any real improvement. It did arrest the progress of my symptoms pretty quickly after starting up, but it took forever to turn things around. Stay with it, adjust your dosing schedule and mix if necessary.

[teebeevee in reply to dcason]

A solid year for real improvement?? On one hand that is discouraging, on the other hand it is helpful to know I should not give up. My doctor doesn't discourage me from B12 treatment, seems to understand I need it, but thinks I should keep looking for other reasons for the mental symptoms, and we are set to discuss possibilities at my next appt. I don't know what else I can be tested for, every bit of my body has been scanned and imaged, literally a dozen different blood tests for various things have been run. On paper I am extremely healthy. I told her I was perfectly willing to turn myself over to psychiatrist for evaluation, but then I discovered this forum, and if not for seeing myself reflected here, and demanding an intrinsic factor test, I would likely be on to swallowing psychiatric drugs by now... So thank you to everyone who posts and answers, it is life-saving, literally.

[blue2323 in reply to teebeevee]

Life saving for me too. I'm so grateful for this board and so grateful to know so many other people who have had the same symptoms. So many doctors say they don't understand how B12 deficiency can cause these symptoms but if we all have them and we all have B12 deficiency then it just makes sense that they're related. Hugs to all.

[Sleepybunny]

Hi,

"I had to have surgery, and suddenly it all got much worse again (nitrous oxide?)"

I'm in UK, so some links may have UK specific info.

Link about nitrous oxide (UK link)

gov.uk/drug-safety-update/n...

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members in other countries.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (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 paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

"debating with my doctor whether my neuropsychiatric symptoms are truly the result of Pernicious Anemia "

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

B12 and Mental Health

b12deficiency.info/b12-and-...

b12awareness.org/2018/04/25...

Mental health symptoms are mentioned in all the books I listed above.

There are many potential causes of B12 deficiency besides PA.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

I am not medically trained.

[Nico89]

Hi, sorry to hear what you are going through! I also have suffered neuropsychiatric effects from b12 deficiency too- I was first found to have b12 deficiency and treatment for that helped a lot, but I had reoccurrence and was then discovered to have vitamin D deficiency (and very very low folate too) and looking back in hindsight my neuropsychiatric symptoms strongly co-incided with when my vitamin D was naturally at its lowest because of the seasons so now that I'm on vitamin D too I'm hoping there won't be any more recooccurence- been ok for the last 7 months or so now. So I think in my case it was a combo of the two deficiencies. (Have also since found out that I have celiac disease which is an autoimmune disease which damages the gut so nutrients can't be absorbed- I am the 3rd generation in my family now to be found to have both PA and Celiac, my mum also has several other autoimmune diseases and I'm beginning to wonder if it's unknowingly eating gluten all our lives has sent our immune systems haywire! There is a function medicine Dr who believes so and explains the biological mechanism of this well, I'll see if I can find a link to his video because it really opened my eyes to what can go on inside the body!)

Sorry for going off on a bit of a tangent there 🙈

Best of luck, hope you feel better soon,

Nic

Edit- found the link- his name is Dr Tom O'Bryan, this vid focuses a lot on the thyroid connection but it is certainly an eye opener as so how seemingly unrelated autoimmune conditions can be linked... youtu.be/bbfYcYMIDdQ(Not working as expected?)

[Hidden]

The things I would recommend to "reset" your body is to take multivitamin and mineral supplements in normal daily doses for a year (don't do mega doses) and use probiotics. This is not something I read or speculate. I have noticed that probiotics have a far higher healing power than injectable nutrients, (some exceptions are Pernicius anemia)). And I do have a theory for this. I suspect that there are yet-to-be-discovered nutrients out there that are not included in your supplements or injections. If you were to travel backwards in time to the 1930s, a doctor would tell you that your multivitamin with just 3 or 4 ingredients in it covered all of your vitamin needs. Today we have 26 essential nutrients in a multivitamin/mineral pill. Why should we assume that in the next 20 or 40 years no new nutrients will be discovered? That's why I mention probiotics. Probiotics help break down food for absorption of all nutrients in food, the discovered ones and the yet-to-be discovered ones.

[Patient001]

Caution on vitamin B6 and nerve damage: I have read that vit B6 is a pro-vitamin that the body must convert into an active form. In the meantime, the pro-vitamin which has no function interferes with the active form, leading to deficiency and nerve damage. I know you post is years old, but I just thought I mention what I read somewhere.