Hey I'm new to this site and hoping someone can shed some light
My story began in 2014. When I started to get bruises on my legs and had a dramatic weight loss and tiredness, I went to the docs they did some standard blood tests and found I had Low folate levels so gave me some frolic acid which I didn't really take to be honest didn't think much of it. My bad. The symptoms kind of just disappeared life got in the way.
Fast forward and symptoms are back with a vegence. I've recently had my CBC, thyroid, liver, kidneys, urine (but if protein but doc not cornerned as no infection), serveral ECGs and a heart emezyne blood test all healthy.
However b12 is 192 (5 weeks ago) doc said that this is borderline and shouldn't cause symptoms and will test in 4 weeks time so have retested just got to wait for the results which will be back next week, Ivd just loved surgery aswell so hopefully might be more helpful. He said its probs due to my diet. He said because I'm 25 he's reluctant to treat and should improve with diet.
My symptoms are
Clammy hands (might be anxiety)
Sweaty feet/swelling feet
Loss of Weight - so frustrating I want to put on weight but can't seem to put it on. People think I have an eating disorder
0 appetite (Gastro symptoms) pains under my ribs - this has only happened in last two months so don't know if it's related because 2 months ago I used to have a really healthy appetite
Feeling full after smallest meals - again this is only past 2 months.
Nausea sometimes. Last 2 months
Shooting pains through my nerves some days it's really painful (that's all I can describe it as - not everyday )
Sensitive to cold (dunno if this is because I'm underweight)
Tired all the time. Never have felt like Ivd had a good night sleep and the simplest things tire me out
Brain fog
Altered sense of taste it's like I can't taste things anymore or the taste doesn't taste as strong of last very long and this has been in the last 2 months
Craving - lemon/bitter/sweet taste - not pregnant lol
Constantly feel like I'm coming down with something
Irritable, mood swings, depression, anxiety, panic attacks but I've had this all my life and been diagnosed with BPD.
I am going out of my mind with worry I keep thinking I have somethings serious like cancer especially with what's going on in the last 2 months everyone thinks I'm making it up or bring a hypochondriac. I've had to move out of my own home with my daughter back to my parents as I can't cope anymore and I've just isolated myself from everyone as this is driving me mad with anxiety. Sorry this is long. Thanks for Reading.
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Emmy1991
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Hi Emmy1991. Hello and welcome. I'm so sorry that your so ill and that its impacting on your life so badly. Unfortunately, the story you tell is all too familiar and all here will understand exactly what you are going through.
I feel like shouting this but I can't 'cause that would be rude - you are not a hypochondriac 😀. The isolation, anxiety, depression...and all your other symptoms can indeed be caused by B12 Deficieny.
First, the fact that your are 25 does not mean that you can't have B12 deficency and / or pernicious anaemia (members of the Pernicious Anaemia Society inculde babies and children - so your medic is wrong about this).
Second, your medic is also wrong in his belief that a B12 level of 195 cannot give you the symptoms of B12 deficiency (I'd be interested to see what the reference range is). It's especially odd as you do appear to have many symptoms that could most certainly be ascribed to B12 deficiency. And a level of 195 is very low.
And one things for sure...considering all the symptoms you have and how very ill you feel...your medic should still be investigatigating the cause - more so if he is absolutely convinced that B12 deficency is not the cause (though I suspect he's wrong about that).
I think you may be in the USA (the CBC - usually called a FBC in the UK)? The information I''m going to,point you to realates to the UK but the underlying principle for treatment, diagnosis and management are the same (but you may be treated with either cyanocobalamin or methylcobalamin, rather than Hydroxocobalamin - but they're all B12.
The golden rule with B12 deficiency is to treat the symptoms, not the blood results. Hovering at the bottom of the reference range (what your medic calls borderline) is in what's called the grey area - and if you have symptoms, you should be treated. Especially if neurological symptoms are present (and you do have these).
It's also worth noting that if anybody in your family has an autoimmune condition, then the cahances of having pernicious anaemia are increased, as autoimmune conditions can run in families.
It's also worth noting that B12 deficiency also has many cross-over symptoms with other conditions so Your doctor should want to rule out all other possible causes (for instance, you have neurological,symptoms so should be referred to a neurologist to rule out other causes).
Many doctors are very ill-informed about B12 deficiency and what people here tend to do is to educate themselves so that they can help their doctors to help them.
So...here's a good way to get started: read the PAS pinned posts to the right of this page when you log on. They'll give you information about diagnostic processes, treatment protocols and guidelines (UK but, as I say, the principles are the same).
Highlight any symptoms you have on the checklist (second pinned posts) and highlight any information in the documents that are relevant to your case. You can then take these in to your medic to support a request for treamtment for B12 deficiency. As you have neurological symptoms, you should be treated with B12 injections.
In the UK the treatment for B12 deficiency with neuro symptoms is 6 x 1mg B12 loading doses given on alternate days, then 1mg B12 injections every other day until no further improvement, the B12 injections every eight weeks (but if using cyanocobalamin, these should be more often - every four weeks, I think). This intensive regime is very important - undertreated B12 Deficieny can cause potentially irreversible neurological damage. Not many medic's seem to know this so you may have to educate your doctor.
Some other tips to help:
Your medic should check for pernicious anaemia - blood test called anti-intrinsic factor antibodies - only 50% accurate - you can still have PA even if you test negative.
You can have pernicious anaemia without having macrocytic anaemia (large red blood cells) - not all medic's know that. 30% of patient who have pernicious anaemia present with neurological symptoms but do not have macrocytic anaemia.
B12 and folate work together and if your folate is low, then your body will not be able to use B12 properly. Your level should be in the top third of the reference range (whatever that is). If your folate is low, your doctor should not give you folate supplements until 24 hours after you have had your first B12 injection - this could cause neurological damage. So - no folate without first getting your B12 level up. Frighteningly, if your B12 was low when you were prescribed folate in 2014, and you had taken them, this would have masked your B12 deficiency and may well have caused you harm.
Also - ask to have your vitamin D and ferritin levels checked - both ar often low when gastric problems and B12 deficiency are present. Deficiencies in the can make you feel very ill. Ferritin is one of those things that should not be bumping along the bottom of the reference range - should be 80 -100 for optimum effect (sorry, can't remember vit D levels - brain running out - it's getting late here 😖).
And so....I go...shortly....
Pernicious anaemia and / or B12 deficiency are quite complex conditions and you might feel a bit overwhelmed and overloaded with information, especially as you feel so very unwell. When you've read through the information you'll probably have lots of questions so please do post and ask if there's anything you're not sure of. And in particular, let us know if you have problems getting treatment from your medic - lots of people here who will pop in and advise and try to help you.
Can I just say again...everybody here will know that you are not making this up. Your symptoms are real. Your B12 level is very low. Low enough to give you the symptoms of B12 deficiency. Your medic should treat your symptoms, not your blood levels.
So...please do go back, take some evidence, and persist until your doctor agrees to treat you. And take heart, recovery is possible once You ar correctly treated with B12 injections.
Take very good care, shout if you need anything and do let us all know how you get on 😀.
P.s. Forgot to say...it looks as if you may have had surgery and hence anaesthesia very recently? Your medic may not be aware that nitrous oxide (an anaesthetic gas) can deactivate B12. So your very low level of 195 may have very little active B12 in it (serum B12 is approximately 20% active B12 and 80% inactive B12 - and you body cannot utilise the inactive form of B12). More information about this on the internet if you want more information (search for 'B12 Deficieny and Nitrous Oxide').
Thank you for your reply it's very helpful I'm from the UK. Don't know why it's put CBC probs auto correct. I haven't had any surgery recently all my problems started 6 months after I had my daughter 3 years ago I just suddenly lost weight and had bruises all over my legs. Everything came back fine apart from my b12/folate which I was stupidly naive to at the time. Lol!
Hi Emmy1991. Ah ha....then all the guidelines on this site are applicable 😀.
If,you had nitrous oxide (laughing gas) during your daughter's birth, then that could have deactivated your B12.
Good luck with your GP...hope you manage to get treatment soon....but do post again if you have no success and need more help. And it would be good to hear how you get one.
And you should see what auto-correct does to some of my replies...which can be quite comical 'cause I don't always spot them 😀.
That's interesting about the laughing gas. Darn that was good stuff haha! He said he'll be doing further testing and I've got an appointment later so should be getting it sorted.
Haha xD I've done it many times. I guess it won't be the first and last for many of us.
Dear Emmy 1991. You have had a marvellous , comprehensive reply from Foggyme . But I would like you to know that there are many people who will be concerned for you . Doctors ignorance on PA and vitamin B12 deficiency is a national scandal . The big pharmaceutical industry which wield such huge influence with doctors are not interested in PA or B12 deficiency, as they cannot make big bucks out of it . Vitamins cannot be parented . That industry is concerned with patenting , as that is how they can make massive sums of money .
Yes 195 is LOW . I'm not surprised that you have symptoms that you mention. I have been through the mill with the symptoms ( and there are many ) . My level was 150 , and I was told that it was OK ! I went privately to get my diagnosis , then I got the minimum loading dose ( 5 injections in 2 weeks ) Which did make a huge diffence to me . Afterwards I was only allowed one injection every 3 months , which was not enough for me . My feet remained completely numb . So I turned to self injections , and told my doctor . My feet have improved a lot but now burn like hell, but they are no longer numb!
As regards the tummy problems . I went privately to a gastroenterologist who told me that PA patients have low or no stomach acid ( Hypochlorhydria or Achlorhydria) This upsets the stomach flora giving rise to the tummy problems .which I also had similar to yours . I overcame this by taking a probiotic called Symprove , which was absolutely brilliant , but unfortunately expensive . After researching the internet , I found that homemade raw organic sauerkraut is just as good . It also contains a larger range of different probiotics .
You have the support now of this forum . I also suggest that you get armed with some books on the subject of P.A. Our marvellous chairman Martyn Hooper has written very informatively on the subject . (Amazon U.K.) also Sally Patcholok (Amazon .com ) I suggest that you join our society as well . They can often intervene and help you with letters to your doctor .
You are not alone now and have taken a brilliant step towards your recovery !
Keep in touch with us . Wishing you all the best for yourself and your daughter .
The big pharmaceutical industry which wield such huge influence with doctors are not interested in PA or B12 deficiency, as they cannot make big bucks out of it
Just out of interest - Exactly what sort of work do you think 'the big pharmaceutical industry' should be doing gratis?
The book "Could It be b12" by Sally Pacholok and JJ. Stuart might also be useful, authors are american. Reading this book was a real light bulb moment. lots of info about b12 and lots of case studies. Sally Pacholok has campaigned in USA about b12 deficiency.
PAS
The PAS (Pernicious Anaemia Society) has members from around the world and of all ages. Some people on this forum join the PAS. There are two local PAS support groups in USA. There is a section on PAS website for medical professionals that may be of interest to your doctor.
The chair of the PAS, Martyn Hooper has written several books about PA and B12 deficiency. His latest is "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which I gave a copy of to my GP.
" b12 is 192 (5 weeks ago) doc said that this is borderline and shouldn't cause symptoms"
There is research indicating that it is possible to have within range b12 results and still have the symptoms of a serious deficiency. See following links
It outlines the recommended treatment and diagnostic process for B12 deficiency and folate deficiency in the UK. I'm wondering if there is an eqivalent document in your country?
I am not a medic just a person who has spent years trying to find answers.
Anxiety, feeling antisocial, loss of appetite, early satiety, dampened taste and smell, shooting nerve pains, heavy swollen legs, relentless fatigue...this sounds EXACTLY like my experience with b12 deficiency.
I do not understand your doctor's assertion that a borderline level is unlikely to cause symptoms. And your level is low, anyway. And if you have nerve pain, why wait? Diet may not be enough right now, especially if the cause of low b12 has not been determined.
You ought to try and have a gastroenterologist check you for malabsorption issues, things like PA and celiac, etc. Also check for other vitamin and mineral deficiencies, which can compound the b12 problems.
When you do take b12, make sure you get enough potassium, since that can get used up.
Please don't be hard on yourself about your mood. You'll just naturally be in a better place when you've got enough b12 to be well.
Thank you for all your replies there very helpful and I will be sure to use the info you've all given me to my doctor. He just rang me and told me all my blood tests results have come back fine kidney, thyroid, liver, fbc but my folate is low 2.6 and my b12 has gone up a bit, it was 192 now 198. Will try to get print off of blood results. He stated again I'm just under as its between 200 - 900 in UK :/ Can I just ask receptionist to print it off? He said this could be cause of sicky feeling. He's said there's nothing to worry about and will have further testing but I have an appointment this evening at 6:40 so will let you know how it goes.
In a way I just don't think what I'm feeling is down to this because thus all started after 2 courses of antibioticsafter a sinus and mild UTI. I don't know my own body anymore. I just keep thinking it's something serious hypochondria.
So went to the docs. He's going to start me on treatment for injections every 3 months and has prescribed me Frolic acid 5mg.
My health anxiety went into overdrive as I came out my memory went (my memory terrible at the moment which just confirms this condition) and all I remember was high red blood count so got home, rang back the doc and he was on about my MCV was high or something Phew!
I've done out now thinking should I have asked for further investigation as to what led to this or should I just trust my doc and calm down. Just so disappointed with my old surgery not picking up on my MCV and not saying they were gonna treat me cause I was "borderline" pfft
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I'm from the UK. Don't know why it's put CBC probs auto correct. I haven't had any surgery recently all my problems started 6 months after I had my daughter 3 years ago I just suddenly lost weight and had bruises all over my legs. Everything came back fine apart from my b12/folate which I was stupidly naive to at the time. Lol! 
Very high B12 but low folate 
Symptoms Now Getting Worse. B12 resistance?
"Function B12 Deficiency" 
