I'm new here... Feeling desperate, ill and confused! Is this PA/B12 deficiency can anyone help please?

[Alesia]

Apologies for the long post! Sept 2106 I started feeling very unwell burning pain in stomach, loss of appetite, nausea, dizzy, faint, weak, rosacea, tingling in arms, legs hands and feet.

Oct 2016 diagnosed with Gastritis & Hiatus Hernia, given PPI's for 3 months which made things much worse!

Symptoms continued plus more

Burning in stomach and throat

Strange minty metallic taste in mouth

Burning tongue feels sore and thicker but not red except the tip

Belching

Extreme tiredness after eating

Feel like I can't breathe properly

sometimes, having to take deep breaths every so often

Undigested food in stools

Weight loss

since Sept is currently 3st 4lbs

Coated furry tongue

Feeling like I'm drunk

Feeling faint/lightheaded/dizzy

Internal trembling

/ buzzing constantly

Bumping into things/ being off balance

Numbness/Tingling in arms, hands, legs and feet

Visual disturbances / blurring, stars, floaters and shadows (eyesight has deteriorated rapidly over the last few months).

Clumsiness/dropping things

Brain fog/difficulty concentrating recalling information

Low blood pressure fluctuating/standing up

Fatigue and so tired

Muscle weakness and loss of muscle tone

Rosacea / red rash across nose area and line up forehead

Dry brittle hair - now thinning and falling out

Brittle nails horizontal ridged and clubbed toe nails

Drenching night sweats

Hot flushes

Adrenaline jolts waking me up when I try to sleep

Shaking in mornings

Sensitivity to cold

shivering at slightest temp change, hands & feet cold

Muscle tension & pain

in left arm

Insomnia/waking early

Palpitations / feel heartbeat in chest, ribs, neck, head & stomach

it's like my whole body is pulsating

Tearfulness

Anxiety/depression

Tinnitus

Strange electric zaps/ twitching especially eyelids

Sensitive to bright light

Multiple Food, vitamin, supplement and medication sensitivities / intolerances

I have had so many tests and seen Gastro, Endo, Neuro GP etc been told it's IBS, Depression, Anxiety, Menopause and basically made to feel like a Hypocondriac!

I'm 52 so Menopause would be a possibility except I had a total Hysterectomy 21 years ago and had been on HRT all that time.

It seemed like this all happened suddenly but looking back there were signs before, 2 years ago I started getting eptopic heartbeats which just stopped, I had become quite anxious and unsociable leading up to feeling so ill and I had had numbness in my arms in the mornings for some years along with a couple of bouts of anxiety and depression some years ago. I used to faint quite a lot in my teens and was anaemic during pregnancies.

Test results:

Serum B12 dropped from 371 to 358 Dec-Mar

Ferritin dropped from 121 to 69 Dec -Mar

Serum Folate 7.2 in Dec

Vit D 44 in Dec

RBC, Haemoglobin & HCT have been raised since Dec

MCH & MCHC at high end of range since Dec with MCHC above range on one test

Red cell folate high at 923 range 200-650 in June 2017

Diagnosed with SIBO

H pylori antibodies positive but stool antigen test negative

IFAB negative

Thyroid tests done as my Dad is Hypothyroid but all normal apparently:

TPA = NEGATIVE

TGA = 74.8 IU/ml

TSH = 1.56 mU/L RANGE 0.270-4.2

FREE T4 = 16.49 pmol/L RANGE 12.0-22.0

FREE T3 = 4.6 pmol/L RANGE 3.1-6.8

URIC ACID = 314 umol/L RANGE 150-400

I had been supplementing with high dose B12 sublingual and high dose B vitamin complex for 4 months before having these following tests as I was not aware at the time that this could affect results

Active B12 >128 range 25-108

MMA blood 0.15

Homocysteine 11.4

Saliva Cortisol tests:

AM - 11.24 Noon 3.93 Evening 1.75 Night 0.86 within range but suboptimal and lab notes say stage 2 HPA axis adrenal dysfunction.

I am so low and feel so desperately ill that I have considered taking my own life as it is unbearable, it's the closest thing to hell I have ever felt, can anybody identify with these symptoms at all or shed any light please?

My GP and consultant have refused a therapeutic trial of B12 injections to see if it helps but they don't know whats wrong with me, I know it is not all in my head! My GP even sent me for a Psychiatric assessment which thank fully the Dr I saw said he could find no signs of Psychosis and believed I was genuinely ill... I just don't know what to do, I have tried change of diet, supplements etc but nothing helps ... Apologies once again for the long post I've tried to include everything in the hope that someone has some experience of this before?

Best wishes to you all

Alesia x

[Alesia]

Sorry I forgot to add the latest symptom is the bottom of my feet feel like they are burning/ tingling at night when I am in bed

BW Alesia x

[jillc39 in reply to Alesia]

great sympathy towards you - burning feet at night are dreadful. I have to take codeine to take the edge of this awful pain.

[Alesia in reply to jillc39]

Thank you and I am so sorry to hear that yours are so painful Jillc39 mine are not so painful just feel hot numb and tingle. Have you been diagnosed? What other symptoms did you have?

[clivealive Forum Support]

Hi Alesia I'm not a medically trained person but many on here will probably suggest self injecting with B12 if for nothing else but to rule it out.

Have you been tested for Intrinsic Factor antibodies?

[Alesia in reply to clivealive]

Thank you for your quick reply Clive yes the IFAB was negative but I had been supplementing high doses of B12 4 months prior to this so I'm not sure if that would have affected result at all.

Best wishes

Alesia x

[Rheadster72]

Loads of visits to healthcare professionals; feel like a hypochondriac - all sounds familiar. My serum B12 was about 450 but have neuro symptoms - i got fed up arguing so self inject. Am sure others have a similar experience to you so don't feel like you're the crazy one. Most healthcare professionals seem not to be up to speed with how to treat, particularly those with apparently normal levels of B12. Did you see a consultant haematologist among all the others?

[Alesia in reply to Rheadster72]

Hi Rheadster thanks for your reply, yes feel like I'm banging my head against a brick wall with these so called specialists! I'm so glad you said that as I was beginning to think I was going mad, no I didn't see a consultant haematologist but it had crossed my mind as to if it would be worth it?

[Rheadster72 in reply to Alesia]

I got so fed up that I paid to see a consultant haematologist for a one off consultation after doing my research and writing down all my symptoms in a table. He was the only one that gave me a sense I wasn't a total health-anxious crazy. He said it was plausible to be B12 and advised my GP to start a trial of B12 for a year. Sadly he didn't advise them of the exact required regimen so GP went for bare minimum! Hence why I self inject. If you did decide to self inject then there is loads of help on this forum to point you in the right direction. I'm relatively new at it and by "self-injection" I get my other half to do it!

[Alesia in reply to Rheadster72]

Sounds like that may be a better way for me to go then, it'd be worth the money just to have someone tell you you could be right and that you're not insane and it isn't all in your head! How often do you self inject, have you had any problems with it and how soon did you notice some improvement?

[Alesia in reply to Rheadster72]

I am considering self inject after reading some of the posts on here but I must admit i'm a bit scared, never injected anything before ever!

[margareta12321 in reply to Alesia]

Hi Alesia if you read my previous posts you will see how much I have been ignored and fobbed off.I started injecting on Sunday and feel improvement. Already.I was left with no option after repeated visits to GP were futile and one was even verbally abusive.I hope you manage to find a solution but there is no harm in trying self injection.It still takes me ages to stab needle in but I'm getting a bit more confident.Good luck.The people on here are so supportive.

[Dani82]

You have just described everything and I mean EVERYTHING I'm going through! X

[Alesia in reply to Dani82]

Omg! really? my heart goes out to you Dani82 Not that I would want anyone to go through this hell but it gives me a sort of relief knowing that others are having the same problems, have you been diagnosed or having treatment at all? x

[Dani82 in reply to Alesia]

I got told after years of being unwell and told it's just anxiety that my b12 was very low! 85!! I totally get what you mean! After reading through this site it gave me hope. I was sure something like a vitamin deficiency couldn't make me this unwell physically and mentally! I. Was sure they were missing something else! But after reading on here I know I'm not alone and with time and injections will get well again! And my god I can't wait for that day! My gp pit me on a loading dose of injections and tomorrow is the last! I'm glad as they make me feel even worse! But a lot of people on here say you get worse before you get better x

[Alesia in reply to Dani82]

I've been exactly the same Dani I haven't wanted to believe a vitamin deficiency could do this I was sure they were missing something! It's so good that you are getting treatment, I hope you feel much better soon! Such a simple thing but anyone would think we are asking for the moon! X

[Alesia]

Anyone had the tingling sort of crawling sensation with numbness in face?

[Rheadster72 in reply to Alesia]

Yep, that face symptom was the one that had me going to the GP in the first place 9 months ago. I'd tolerated the pins and needles in feet for a couple of years before that. The head and face symptoms I find the most unbearable. Tinnitus being the worst of all for me.

[Alesia in reply to Rheadster72]

The crawling tingling face thing is horrible I thought I was having a stroke at one point! The worst for me is the internal vibrating/ trembling it's exhausting as it keeps me from sleeping

[margareta12321 in reply to Alesia]

Yes that's been one of my symptoms.

[Dani82 in reply to Alesia]

Yes but sometimes my anxiety does that. That's usually how o can tell the difference from anxiety to the b12 deficiency. But we're all different x

[terrybraden in reply to Alesia]

H Alesia,

Yes, I have had that one too!!

[Button11]

Sorry for how you are feeling this is EXACTLY all the symptoms I had and bloods showed low b12, low folate and bit D I was given 6 initial b12 injections as they said (after a second blood test) it was just a natural decrease even though I've not changed my diet or diagnosed celiac etc. Also had vit d and folic acid supplements. I do feel better than I did before the injections but stil not right and like yourself I've been told it's ibs and anxiety and now been prescribed antidepressants (which I've not taken).

It's so silly they only give injections when it's completely below the level but everyone's bodies are different. I'm not sure if ibs causes malnutrition and makes the gut unable to absorb b12 but I read it didn't so not sure. I now take probiotics for my gut.

Can you not see a different gp about the injections?

[Alesia in reply to Button11]

Thanks button Not much chance of seeing another GP appointments are like gold dust here and a huge shortage of gps. Yes I was told IBS too and anxiety but I just knew it wasn't. IBS has recently been linked to Sibo and that definitely causes malabsorption

[kyanah]

I had exact symptoms as u felt like i was dying u are definately b12 defficient i ended up in hospital thats where they found my b12 low 110 .i had gastritis too antral gastritis which caused b12 as my stomach could not absorb it it took me a year to get diagnosed with numerous amount of times in hospital . I lost two stone in weight soo tired.mine isnt great but i would say 60percent better im going to self inject now as my 3 monthly is no good . Demand another b12 i had 4 endoscopies ct scans which showed bowel blocked mri showed nothing just gastritis and had colonoscopy which showed diverculosis . I feel for you as i know how hard it is i had really bad panic attacks and psychosis too i thought i was having heart attacks .i sweat sooo much too i thought menopause as i have night sweats . Bowels thin with food in it then mushy , then oily it was so bad.

[Alesia in reply to kyanah]

Your story sounds almost identical to mine kyanah! Feels like I'm dying every day it's awful and the docs just don't seem to know anything or even care! It's so encouraging to hear you are feeling better for the injections, if I don't get any joy today at the docs I am going to go the self inject route! Did you have sensitivies to drugs and supplements etc? I can't seem to even tolerate a paracetamol in my stomach x

[kyanah in reply to Alesia]

Hi yes my stomach is burning at moment feels like a knife cant eat much little and often.i have had a couple of bad days dont know whether its because i started si myself two days ago.

[KimberinUS]

Im sorry you are feeling so aweful.

I am wondering if you have been treated for h pylori. If not how did it magically go away since you have the positive antibodies? It can be difficult to get rid of, even with triple therapy.

Also with your hpa axis being fatigued, are they treating that? I was started on a cortisol reducer originally and it helped the internal shaking and waking up with anxiety attacks.

I was also on high dose b12 tablets, 1000mcgs, 4X daily, for 3 weeks prior to getting my first injection. Only after my first injection was i suddenly able to breath better and i had no idea i even had a breathing issue. Next day i was just magically able to take a deep breath without any discomfort. It was so weird. Completeky positive but so strange.

I only got shots weekly. After 6th injection, my face suddenly had color, which i also had not known was an issue. I just thought i was more careful about using sunscreen on my face, so it just wasnt as tan. I was wrong. My tongue also reduced in size and changed from super red to pink. I was no longer almost puking every time i brushed my teeth.

My feet went from being cold to being so hot i would run cold water ovee them in the bath. I think this has to do with the thyroid kicking back in, uptick in temperature regulation, after b12 injections. This sensation has reduced to about once every week or 2 after 12 shots.

I have vertical lines on all of my finger and toe nails. I only have the half moons on my thumbs. I keep watching them to see if the lines stop or the moons return but they havent yet.

I was treated for h pylori infection 2 weeks ago so im hoping that changes soon.

Best wishes

[Alesia in reply to KimberinUS]

Hi kimberinUS no I wasn't treated for it but I did take metronizadole and erythromycin last year for a tooth abscess so I don't know if that got rid of it, I don't even know when I had it as the blood test only tells if you have had it at some point but as the antigen stool test was negative that says I no longer have it? I don't know how accurate that test is. I've just seen Endo who is going to do synacthen test for adrenal dysfunction but that's not going to happen for weeks yet. The waking up shaking thing is just horrific! My tongue feels sore but it's not red except the tip but it's fatter than it was and I keep biting it accidentally, temperature control is all over the place! One minute I'm shaking with feeling so cold then I'm sweating and flushing the next. I have both vertical and horizontal lines on nails and they have become clubbed shaped esp toenails.... It's so good to hear the b12 injections are making a difference to you it gives me hope x

[KimberinUS in reply to Alesia]

My naturalpathic doctor recommended nutri-west brand, pro-cortisol balance.

Pro-Cortisol Balance - 60 Chewable Tablets by Nutri West amazon.com/dp/B000FGXOQG/re...

I order it from Amazon now because it is cheaper than doctors office price. $20 for 60 pills, so 15 day supply at my dosage. I took one in morn, one afternoon and 2 prior to falling asleep to combat the waking up with anxiety/shaking.

It took 3 or 4 days but anxiety reduced about 90% so i was stunned.

I hope you can find it on Amazon in your area.

Hope this helps

[terrybraden]

Hi Alesia,

I understand your symptoms, and It was also hinted that it was "All in my head", too . I get numbness in my left arm and sometimes I get it in my left leg and right foot.

About the night sweats, I know about that one. I used to wake up drenched.

Hope this helps you to know that someone else is in the same boat.

Terri

[Alesia in reply to terrybraden]

It does help a lot so thank you so much terrybraden. Are you being treated? Feeling better?

[terrybraden in reply to Alesia]

Hi Alesia,

I have been treating myself, and yes, I am feeling better, but I have a long way to go. Have hope though, you will be there too. I am seeing a new GP today so I hope I am understood.

Terri

[Hidden]

Please refer to my earlier post. Your burning feet is peripheral neuropathy. Could be fro sciatic nerve compression in low back.....see chiropractor Other option could be toxic exposure to pesticides, etc.