I'm so confused and GPs seem to have no idea what's going on, I even went to a neurologist to get tests done and she said the tests she did said I'm fine, that I'm clever and I'll be able to figure it out; this hasn't exactly been that useful in resolving my symptoms. I apologise in advance if this isn't suitable for this forum but I'm sort of desperate at this point and need advice. I'm a 23 year old male with no diagnoses of any health issues.
So basically I got my B12 levels checked and they were about 800pg/ml. However, I have numbness in my legs, feet (even my genitals embarrassingly enough which happened a few weeks ago), tinnitus (as I write this I turned off my music and I can just hear ringing, it's so annoying and I have to have my fan on at night otherwise it drives me insane), vision disturbances (blurry vision, harder to read, black squiggles), a lot of weird neurological symptoms that can't seem to be explained elsewhere. I feel kinda dizzy and like I'm a few seconds behind what's happening. Shortness of breath and constant fatigue that can make it exceedingly hard to work my physical job at times. I don't even have to do anything to be exhausted. I can sleep 10 hours and wake up stupidly tired. Trouble with walking too seems like I have balance issues. Constant low mood and it feels like I have barely any dopamine as weird as that sounds. I have trouble thinking and even talking, seems like I can't form thoughts and speak them, which may seem bizarre since I'm typing this out but it's harder when it's in person and you have to be more witty.
All of these symptoms have been happening for over 2 years and just gotten worse over time despite me regularly consuming B12 in various forms: oral, sublingual, sprays, drops. My red blood cell count was below the low reference range though at 4.4 when 4.5-6.5 is normal.
I got in the bath once and it was quite hot, got out. I had this extremely intense pain in my head and I couldn't see anything with my eyes open. It's like when your eyes have light shone in them. I felt really dizzy and almost fell over and had to lay in bed with my S.O looking after me because I literally felt like I was going to die. I wish I was being melodramatic but I thought death was imminent and all the symptoms leading up to that point were evidence that I was dying.
One GP said that anxiety was causing my shortness of breath, I mean that could be the case but I highly doubt it, it doesn't explain all my neurological symptoms. I'm finding daily tasks hard to do without being extremely tired, it's actually quite unbearable. I don't understand what is going on. Is my body not absorbing B12? Do I need B12 injections? I'm just very suspicious that I have PA at my age, but if I had PA, doesn't taking B12 in supplements alleviate it if you take it in the monstrous dosages like I am? I take a lot, I've experimented with taking 1200ug of a B12 spray, 3000ug of oral B12. It does nothing. Any advice? Should I just go back to my GP and explain this again in more detail?
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Zerobasher
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Hi Zerobasher firstly I am not a medically trained person but have had P.A. for nearly fifty years.
Has your doctor actually tested you for P.A. using an "Intrinsic Factor Antibody" (IFA) test?
If you actually did or do have P.A,-. it would matter little how many B12 supplements you take orally as although it may get into your bloodstream it may not be actually getting into the cells.
Before my diagnosis of P.A. in 1972 I described myself as a "walking Zombie" - perhaps that could describe you now too.
Thank you for your response. I don't believe my blood test that I did tested for PA or the IFA test. I'm going to ask if I can get that done when I next go to the doctor's. That third paragraph of yours is interesting. I was reading about it and apparently even in PA patients, 1-2% can get through to the bloodstream using passive diffusion (I think that's the term)? So that's why I was thinking that maybe if I just take a lot of B12 supplements it'll be fine. But as you say it may not actually get into the cells. Is that suggesting that the only relief for some people is B12 injections? I actually had one B12 injection that cost me £40 a week ago, it was 1mg of hydroxocobalamin. I didn't really notice much difference but the tinnitus in my left ear got slightly better, there's less blowing in my ear but that's really the only difference I felt, that could be explained by something else though. I appreciate your advice though, I'll have to get those tests done.
As far as I am aware injections are the only treatment for P.A.
When my doctor in 1972 asked whether I wanted the good new or the bad news I asked for the bad news. She said you're going to die within two years.
I was 30 years old with a sick wife and two children under six.
I said - What's the good news?
She said you're not going to die within two years if you either eat raw liver three times a day or have B12 injections every four weeks (of cyanocobamalin) for the rest of your life.
I opted for the injections and I'm still "clivealive" at the age of eighty.
(By the way I love liver baked with onions in gravy)
Clivealive's reply is a little confusing. If you have PA it means a problem getting B12 from your diet or supplements into your bloodstream via your digestive system, not a problem getting it into your cells from your bloodstream. Although you may have a problem there, and many of us do, that is not PA, that is something else which hasn't got a name and is not well understood. Given your B12 levels are 800 it would be unlikely you have PA unless you have been taking it sublingually, which I think you may have? Sublingual supplements are about going straight into the blood under the tongue and avoiding the digestive system.
Make a comprehensive list of your symptoms and go back to your doctor. Unfortunately because of your B12 levels it will be hard to convince them that your issue may be B12 (and there are certainly other causes of these symptoms which your doctor needs to explore). But it is certainly true that for many, as Clivealive says, the B12 in the bloodstream does not get where it needs to be and we need to have very high levels in our bloodstream to function. See if your doctor will test for homocysteine and MMA, which if elevated indicate B12 deficiency, as well as PA.
Your symptoms do seem to be consistent with B12 deficiency and if it is that (and it may not be) it needs to be treated as soon as possible to avoid damage.
It can take a few injections before we start seeing improvement.
Thank you for your reply. I have been taking sublingual b12, I've tried this methylcobalamin sublingual tablet that has 2500ug each dose that takes a few minutes to dissolve under the tongue, so that would probably explain my very high B12 levels. I also was taking B12 methylcobalamin spray under the tongue at 1200ug per dose. Neither of them did anything to alleviate my symptoms. I just get a feeling they didn't take my symptoms seriously despite it wrecking havoc on my quality of life. Hopefully they'll be able to test the IFA, homocysteine and MMA, I'll have to ask for all three as well as describe my symptoms further. Thank you for the advice.
While B12 deficiency could produce the symptoms you describe it is quite unlikely to be your problem with your levels that good. Also if it is the problem you would be likely to get some/more benefits from the sprays, tablets and injection, even if only short-lived.
Have you been checked for:
Folate - similar symptoms to B12 and B12 won't work without it?
Iron - could explain the breathlessness?
Vitamin D - closely mirrors B12d?
What made you think it was B12 deficiency in the first place?
All your symptoms can easily be the result of anxiety but that doesn't mean there is not a physical problem - if they are due to anxiety, you need to find out what is causing that problem in the first place.
Please be calm with the Dr for best effect (I know this can be difficult when you want answers to an unexplained problem) and just keep asking for how they are proposing to do to help you and what their plan of action is.
There are myriad things that it could be from various hormone or enzyme imbalances that are causing vitamin and mineral lockup, to musculoskeletal problems causing trapped nerves, to weird and wonderful things that I have no specific knowledge of, and it would be sensible to write your symptoms down in a long list with notes to cover things like frequency of occurrence - when you first noticed them, how long each episode lasts if not continuous and any events that may have triggered it. An idea of any diet or lifestyle issues would be helpful too.
While it is good to be aware of possible diagnoses, be aware that Dr's don't like being told and that you need to keep an open mind too as you don't want to miss something unusual that you might not have heard of.
Definitely go back to your GP and ask for their help. You may have to go through several different testing regimes to get to the bottom of it by ruling out different possibilities, but keep your cool and keep going.
Please let us know how you are getting on - it would be really helpful to know what it is, whether it is B12 related or what else can mirror the symptoms.
Hi I am sorry to hear about your health and I am inclined to agree with Denise. I was on a similar track as you taking doses of B12 convinced it was that although I didn't need them and they actually started making me feel much worse and emphasised my anxiety and neurological symptoms. I now take very high doses of magnesium I like bioceuticals ultra muscle ease. Coenzyme Q10, get vitamin D from your doctor and some additional drops. Alpha-lipoic acid, high dose B vitamin a number of multivitamins and fish oils all of which I get from Bepure because I live in NZ. I would then go to a good naturopath, they drilled down on my blood as and found all manner of things wrong despite my doctor saying they weren't and a microbiome test which revealed all sorts of nasties again I went to be pure fortunate to get in with lisa but not easy..bepure.co.nz/pages/clinic-s.... (I prob would insist to get in with her so knowledgable) This person is apparently amazing in the USA Jacob Teitelbaum ..just my thoughts but sometimes it takes a while for neurological issues to really present but I would start digging and paying and like me go down different roots as after all its your helath.
I don’t know whether your gp would be willing to trial injections, mine wasn’t. I ended up paying privately to get them.
I was like you, exhausted with numbness on the rhs in foot and hand.
Now that the numbness is resolved I do seem to be able to take oral supplements and they do something. I’m still not sure what my problem is whether it’s part psychological and/or to do with my digestion. But the injections brought the feeling back, helped the tiredness and as long as I top up with spray I can manage on a couple of injections a month.
I have found my doctor very disinterested in working out any root cause or in any of my experiments to get better.
Hi Zerobasher.. has your GP or neurologist done any spinal mri…I have many of the same symptoms as you..,an mri showed lots of bone spurs in my spine and a compressed spinal cord in my cervical area and now similar in my lumbar area…If this hasn’t been done I would ask the GP if he can arrange Lumbar mri because of the numbness in feet legs and genital area. I also have strange blood results b12 ..folate .,PTH..TSH and other disorders…hope you get the help you need…write everything down and take photos for your next appointment with GP.
Have a look on the Pernicious Anaemia website pernicious-anaemia-society..... (it is a very small charity). You may find some information of use on there. There is quite a lot that is available for non-members. Saying which it is only £20 for one year and you can call their member helpline and chat to someone.
B12 is absorbed from your food in your digestive system into your blood stream mainly by combining with intrinsic factor protein and a very small amount is separately absorbed by simple diffusion. If you have PA then you don’t have enough intrinsic factor to combine with the b12 . The blood test tests for Intrinsic factor antibodies. If the test is positive then you have PA. However, the test gives a high level of false negatives so if your test is negative it doesn’t rule out PA. There are other reasons for b12 not being absorbed properly from your gut eg if you take ppis such as omeprazole which block stomach acid production. Acid is required to separate the b12 from food before it can be absorbed via intrinsic factor. If you are coeliac, have small intestinal bacterial overgrowth these can also affect b12 absorption. If you eat a vegetarian diet than you will not be eating enough b12 to start with. If the cause of b12 deficiency is PA then injections are needed as it’s unlikely enough will be absorbed by simple diffusion. If ppis are the cause then b12 tablets can work. If you are vegetarian then tablets can work long term. But if you are deficient and have symptoms then whatever the cause injections are the most efficient way to increase your b12 levels quickly. I’m not sure from what you have written whether you have ever had low blood b12 levels? I would definitely ask your Gp for a full blood count and a general profile testing kidney, liver function, Hb1ac for diabetes, thyroid test, ferritin/iron levels, b12/folate, vitamin d, magnesium, sodium/potassium levels. MMA and Homocsteine blood tests can also help diagnose vitb12 deficiency but I think have to be done in a hospital setting (my Gp said that she couldn’t do them).
It is also possible to have normal absorption of b12 from your gut into your blood so your blood b12 levels are normal but for b12 not to be able to get from your blood into your cells. This is quite rare I think and the MMA and homocysteine tests can help diagnose this.
You don’t say what tests the neurologist did? Normal tests to expect would be nerve conduction tests and EMG to find out whether the long nerves/muscles in your arms and legs are working properly. You could have brain and spinal mri scans to see if the problem is due to the nerves in your central nervous system. These scans would look for various spinal problems eg intervertebral disc problems and other damage in your spine due to MS. If your neurologist hasn’t done any tests then she really can’t tell you what is going on. Good luck and I hope you get some answers.
Hi, I'm so sorry to hear what you're going through !Your neurologist was out of order - was she insinuating that your illness is psychosomatic ? ?
There is SOMETHING wrong with you, and the medical profession should be finding out exactly what !
My GP said that all my blood tests were fine, so basically bye bye, nothing wrong, despite me having severe iron deficiency anaemia and B12 deficiency symptoms including neurological.
My B12 levels were at the high end of normal, and that was without taking supplements.
Some would argue I don't have PA, but there's no doubt I have a B12 deficiency whatever the cause, and injections have restored me to an acceptable level of health.
I always tell people I have PA because how else can I explain it ? I don't want them thinking my condition is dietary when it's not.
Whatever, you need to pursue a correct diagnosis , it can be a real battle, especially when you feel too ill to fight, but stay strong and don't give up !
I felt as you do now, that I was literary at deaths door, but I've been amazed by how much better I am now after the correct treatment.
It has taken a long time, however. I was fortunate to argue the case to continue intensive "loading" injections for nearly six months, as that's what it took to resolve my neuro symptoms. It's taken years to get me to this point, probably because I went undiagnosed for years !
So keep going, don't lose heart and hope you get what you need to feel better soon. Very best wishes !
Your story sounds incredibly similar to mine - and I'm terribly sorry about that! What you're experiencing is completely devastating and being young, it can be even more difficult to get anyone to take you seriously due to the unfortunate stigma that young people can't get sick.
I'm still trying to figure out the root cause of my issues, but perhaps my journey can help you find additional avenues to explore.
My issues began about a year after moving to a new rental property. Unbeknownst to me, the property had a major black mold issue and my partner and I both became very ill, not only with respiratory distress, but also with cognition issues. I developed chronic migraine. After several months of exploring various theories and finally realizing my symptoms improved when leaving the house for extended periods of time, we tested for mold and found more than we could have imagined. My symptoms significantly improved after moving, but some lingered. I found that I was severely B12 deficient and have been self-injecting ever since (also a long story). This definitely improved my symptoms, but as the initial improvement occurred after leaving the moldy property and before the B12 injections, I have to conclude that the issue was multi-factorial. If you've been living in the same place for the past 2 years, I'd highly recommend testing for mold. Environmental illness is nothing to disregard, and even my neurologist agrees the inflammation caused by the mold exposure likely induced the next part of my story.
After about a year, my symptoms again worsened and I was eventually diagnosed with IIH (idiopathic intracranial hypertension), which seems to be caused by an inflammatory narrowing of my venous sinuses (something most neurologists don't recognize and most radiologists don't report - I had to evaluate my own images to detect this, and it was later confirmed by an expert in the field). In IIH, there is either an over-production of cerebrospinal fluid (CSF) or a lack of absorption/drainage of CSF, with the result being a buildup of pressure around the brain and optic nerves. Your symptoms of tinnitus, visual disturbances, cognition issues, and headache make me very suspicious that you may be experiencing the same issue, and I would certainly want to rule this out if I were your neurologist (although I think you need a new neurologist based on the complete apathy yours has demonstrated). A diagnosis of IIH doesn't tell you why this is happening, but it does tell you what is happening. IIH can also cause blindness, so it's not something you want to go undiagnosed.
I sincerely hope you are able to work this out and start feeling better soon. If you have any questions, please don't hesitate to ask.
Disclaimer: I'm conventionally educated in veterinary medicine, not human medicine.
Welcome here. Sorry, I’m very tired at the moment so it’s just brief. Others have been helpful with pointers. B12 deficiency/PA we’ve got a multitude of symptoms, I can relate to yours. Numb feet, legs, genitals (I’m female), the bath being too hot (it’s got a special name but do you think I can remember). it’s how they used to test for multiple sclerosis in the good old days.
Apparently, its because of demyelination of nerves so making our symptoms worse. I’ve lay on bathroom floor with room spinning and panting for breath as faint. Such a good look. (Vision not affected for me).
And yes I could not even formulate thoughts, let alone get them to my mouth so was practically mute.
You have had 1 injection which you didn’t have any adverse reactions to. But it would be really great if you could get loading doses. So, please push for those.
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