Help what happened?

[Popcorn12345]

My ferritin saturation has dropped since b12 injections! What do I do?

I feel so ill!

We now think the only reason I was low in b12 was a very very stressful year!

[Nackapan]

My ferritin levels dropped when I had my initial b12 loading doses. I was prescribed ferrous fumarate 210.

Bloods were repeated 3 months later.

Levels can take months to normalise.

I still have to take s low dose iron tablet to keep levels up.

[Popcorn12345]

I'm starting to think my symptoms aren't b12 related. They just don't fit with anyone else's story.

[Wwwdot in reply to Popcorn12345]

Hi Popcorn

Sorry to hear you feel so ill. You are not giving us many clues to help you - nothing in your bio and no specific info about your symptoms.

I have been self treating with B12 for two years now and supplementing with iron and my ferritin has gone down slightly. I am still working hard to try to improve it and raise levels. I am currently trying liposomal iron.

Can you give us some more info and hopefully we can be more helpful.

🤗🤗🤗

[Popcorn12345 in reply to Wwwdot]

My symptoms are burning in the buttocks but only when I sit down? That makes no sense. And head pressure in the mornings. I've had endoscopy, colonsocopy. CT scans and biopsies done. I do not have PA, cealiac or chrons. My pancreas is fine. I have no autoimmune disease.

My b12 levels weren't under reference range at 445.

I had a very stressful two years and just wondering if the stress was just causing me to use up more vitamins in the body to keep me going. I was running round like a headless chicken.

I was also told actuve b12 doesn't always go up if you are stressed out because you are using it up quicker.

[Wwwdot]

Hi popcorn

That is not a lovely combo of symptoms is it?

What are your bloods like and vitamins in general.

Do you feel any different when you supplement B12?

🤗🤗🤗

[Popcorn12345]

I notice I'm more energetic with sublingual b12 but didn't notice anything good with b12 injections. My vit D was low but to be honest i think most people's are. Mine was 24pmol ita now 77 pmol.

My ferritin was 90. But my saturation was around 16% to 20%. Now it's 14% assuming because of injections.

My b12 was 445. Active was still in range just the lower end. But as I say it could have been being used up quicker due to stress.

My folate was 7.

My endoscopy and colinscopy was perfect apparently. They checked twice fir cealiac and chrohns. All clear. Had a million blood tests for autoimmune problems all clear. Biopsy taken for PA and all bloods fir PA all negative.

I'm starting to think b12 was a red herring.

[Sleepybunny]

Hi,

From personal experience I know it's possible to have severe B12 deficiency symptoms with serum (total) B12 results that are well within range.

If you have time, look up functional B12 deficiency.

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.

MMA, homocysteine and Active B12 may help to diagnose this.

I wondered if having a set of results that are within range but perhaps less than optimal might cause issues.

B12 websites

Pernicious Anaemia Society

pernicious-anaemia-society....

Based in Wales, UK. Has overseas members.

PAS membership is separate to membership of this forum. People do not need a PA diagnosis to join.

pernicious-anaemia-society....

B12info.com

Run by a UK campaigner on B12 deficiency issues.

b12info.com/

B12 Awareness (US website)

b12awareness.org/

Stitchting B12 Tekort (Dutch B12 website with English articles)

stichtingb12tekort.nl/english/

Two useful B12 books

These were published a few years ago so some bits may need updating.

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

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

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

Very comprehensive with lots of case studies.

If you're in UK, there's a lot more info I can pass to you.

I'm not medically trained.

[Popcorn12345 in reply to Sleepybunny]

Any time I tell someone about the burning buttocks when I sit down I get told sciatica. No one ever says sounds like a vit deficiency. I dint get the tingling in mu hands and feet and all that. Dr klien said it could be but now keeps saying I don't know ask someone else!

All other doctors have said no it's not from b12.

My MMA was fine. My Intrinsic factor was negative. Biopsy was negative.

[Asselchen in reply to Popcorn12345]

Doesn't sound like a b12 issue to me either. Neither the levels really fit, nor the symptoms.

[Popcorn12345 in reply to Asselchen]

My active b12 was 48 which was also in range but was just told borderline. However back pain when walking long distance and burning buttocks when I sit down only don't seem to fit the b12 bill. However all my mris are fine haha. Maybe it's all just stress!

[Technoid in reply to Popcorn12345]

Yeah, I agree with Asselchen . If those are your only two symptoms, they're not a good fit for B12 deficiency. And although not responding at all initially to injections is possible with a functional deficiency, if you don't have a functional B12 problem, I would expect the injections to do something, either increasing symptoms somewhat dramatically as in early treatment decline, or improving them.

Sciatica does sound like something to investigate but hard to be sure, more investigation needed I think.

[Sleepybunny]

About half of people with PA get a negative result in IFA test.

Article about MMA

stichtingb12tekort.nl/engli...

Have you had a homocysteine test?

labtestsonline.org.uk/tests...

Link about iron tests

labtestsonline.org.uk/tests...

If you're in UK, might be something useful in my replies on this thread below.

Help Needed! Have I got Pernicious Anaemia?

healthunlocked.com/pasoc/po...

[Popcorn12345 in reply to Sleepybunny]

I was told a biopsy was the best way to rule out PA and mine was negative!

[Sleepybunny in reply to Sleepybunny]

"Any time I tell someone about the burning buttocks when I sit down I get told sciatica"

B12 deficiency can cause damage to myelin sheath around nerves.

I'm not medically trained but it seems likely to me that B12 deficiency could cause damage to myelin layer around sciatic nerve which might then result in symptoms similar to sciatica.

I searched online for "sciatica B12 deficiency".

[Popcorn12345 in reply to Sleepybunny]

Mines only when sitting though. Surely it would burn all the time

[Popcorn12345 in reply to Sleepybunny]

I also had nerve and muscle conduction studies done and they were normal

[Sleepybunny in reply to Popcorn12345]

Were you checked for small fibre neuropathy (SFN)?

Symptoms of B12 deficiency

theb12society.com/signs-and...

b12info.com/signs-and-sympt...

[Popcorn12345 in reply to Sleepybunny]

Everything's fine

[JesusMercy60 in reply to Popcorn12345]

hello Popcorn12345,

I'm sorry for all your pain, 7 years ago I had horrible burning in my back muscles then eventually it started later with all kinds of symptoms moving around my body, my legs then feet. I went to the Dr's blood work with all of them and went to the Chiropracter all the time, nothing was working, all test came back normal but back then I and the Dr.'s had no wondering of B12 D or PA. I did start to take B12 sublingual so when I did get one test done it was high and I stopped the b12, now last year I found out I had in range b12 278 serum and then later a few months ago PA. of course I'm now coming back from almost dying and starting to recover now. but I just know it all sound so familiar your story in the beginning of mine. I hope this helps. of course if I had known back then to start injections things would be very different.

[Popcorn12345 in reply to JesusMercy60]

But all my tests are fine. There's no cause. It makes no sense. I don't understand. I don't have PA. There's a good chance I just had low levels because I was severely stressed

[JesusMercy60 in reply to Popcorn12345]

well maybe so, my IF test was neg a year ago, now positive, I had given up the past years as I was told my blood work was all perfect. even my b12 was in range 287 but now I know thats low anything below 500 is deficient in other countries. well now all my questions were answered but like you the last years I had no answers as things got worse. I hope the injections will start to help soon for you.

[JesusMercy60]

oh and also when I started to inject yes nerve burning pain itching pins and needles , couldn't put socks or sheet on my feed at first so painful it got better in certain ways but my nerves and emotions anxiety have all improved 4 1/2 months later but still have reversing out symptoms in other places of the body so I am still healing everywhere, oh and stomach issues and those are healing but not gone yet either. the treatment is very hard to cope with but it has improved. and I know now how many nerves in my body were dying as well and my mind. from my head to my toes I feel them now healing. not very comfortable either. I've learned everything from these Angels on this forum that our lord sent me.

[Popcorn12345 in reply to JesusMercy60]

I had biopsies taken though. I was told you can know for definite about PA from biopsies

[JHEW0836]

Is it periformis syndrome? I had this when I was going through perimenopause. Exercises helped tremendously.

[Popcorn12345]

This only started after a traumatic event. I had no nwrve pain or back ache before that. It literally started after the stressful period was over. Thinking it could just be mind body connection