hi. I’m new to this and I’m hoping that someone can help me.
Over four weeks ago. I had a serious flu that turned out to be bronchitis. I was sleeping 20 hours a day and was seriously fatigued. I wasn’t getting better so went to the GP who told me I had post viral fatigue and told me to rest but weeks later I was getting worse.
Long story short I had a blood test done and was told I have low B12 levels. They didn’t tell me the metric. They said the level was 36 (is this low?). My symptoms are now extremely bad. I walk with a significant hobble, have severe weakness in my limbs, pins and needles, brain fog, worsening motor skills in my hands, I am exhausted and can only do one task a day which is usually to take a shower.
I am on weekly B12 injections (have had 1 last week so far) I was told that I should have treated my flu 1st. I don’t know if this means I will be sicker for longer. I am also terrified that my symptoms are down to something else. Not to mention the worry that my neurological symptoms will be permanent. I haven’t been able to do anything let alone work either. I am 29 years old by the way.
Any similar experience or advise? I’m so confused about what is happening. Don’t know if I have pernicious anemia either even though I did ask.
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Hatwindowwindow4
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You must be feeling terrible with a B12 level of 36. Your symptoms are all typical signs of B12D which are making the flu worse, Your GP obviously doesn't have a clue about B12D. It will kill you if it's not treated, IMO it is far worse than flu and you should get treatment asap. You need 'loading' doses - an injection every other day until your symptoms get better. One injection a week is useless. The only problem is getting your GP to understand and help.
As I said before, with such a low B12 level, once a week is just a drop in the ocean. You may see some improvement but I doubt it. You need lots of B12 to start mending. Most us here find we need levels over 2000 to get better.
If that isn't active B12 (not usually routinely measured), its the lowest serum B12 I've heard of. Very shocking that your GP would allow things to get this bad without checking blood results in last few years. You will probably need a lot of B12 quite regularly (probably every other day) and quite some time to recover (depending on how long you had symptoms for).
Do NHS test Active? I think it was a generic test that measured other things like vit D. Do you have a guess as to how long, like 1 month? I have been off work for a month already…
I don't think testing active B12 is common but the test results should state the range. Just the range would be enough to recognise a serum vs active B12 test.
Recovery depends on how long you had untreated symptoms. I don't want to alarm you but you may need an expectations reset as recovering from a serious and long-lasting B12 deficiency would take at least some months and resolving of serious neurological symptoms may take 1-2 years. How long have you had neurological symptoms?
They only read them over the phone so I don’t know about ranges. I see, this will be difficult to accept as I am basically dealing with debilitating symptoms now.
Neurological issues wise I am not sure, walking and nerves perhaps only a month but thinking about it, my brain fog, fatigue and muscle cramps have been going on for at least six months. I am most concerned about my walking at this stage though.
NHS results should be available via their app I think but others here will be better able to advise on that. I am glad that the most serious symptoms are only there for a month as the longer treatment is delayed, the more difficult the recovery. Did your symptoms get worse or better after loading doses? I am confused that you may not even have had loading doses (every other day).
I have the app but there’s no section on blood test results for me to access. I might need to request it. They have only given me one injection so far if that counts as a loading dose? My next dose is this week. I haven’t noticed anything yet.
No it only counts as the 1st of many loading doses I'm afraid. You need 1 every other day until symptoms stop improving. Have a look at the pinned posts for info you can take to your GP. This is standard treatment though an awful lot of GPs don't seem to have attended that bit of their training course.If you get nowhere you need to treat yourself, again lots of help on the pinned posts here.
How long loading takes is diff for everyone but you really need to get started. Good luck
I concur with Technoid on the duration to heal. I went from completely bedridden, unable to walk, hardly able to talk, I lost 90 lbs, etc. to now hiking a couple times a week. Although I suck at hiking as I still have some residual balance issues but I love it!!!. But remember the B12 injections just don't arrest further damage immediately. The myelin sheath (a protective covering over your nerves) requires B12 to be healthy and yours are frayed and damaged so until the B12 gets in there and repairs that you most likely will experience some other strange or worsening symptoms. It has taken me a couple years to resolve most of my symptoms. The most important thing is early on, like now, treat yourself to some B12 injections often to get your levels up and keep them up. Many on here recommend every other day injections which seems good to me. If I had it to do over again I would certainly do that.
So just hang in there as they're many wonderful folk on this forum and very smart on this condition who'll help you along this discombobulating journey you're about to undertake, albeit not one that you volunteered for! 😉
Optimum Vitamin D levels, (actually a hormone with receptors all over the body), are also vitally important to help our bodies fight off viruses.
Family members had gene tests done, which showed we find it difficult to absorb B12 and D. Supplementing with high dose D3 + K2 plus every other day injections for B12 deficiency has made an enormous difference to all round health.
I recently discovered another terminology for Active B12, I had asked my GP and he told me it’s called Holotranscobalamin test. I’m in Australia so, curious if this is the same in the UK or elsewhere. It’s a requested test and an out of pocket fee as well.
Thanks Technoid, your knowledge is greatly appreciated. This is the best explanation of B12 and the parthways to absorbing this vital nutrient that I have ever come across. I have printed a scientific paper on this and understand it mostly but, I’m no scientist and needed it to be explained in layman’s terms. Now every thing makes sense. (I still will be referring to this many more times though to make sure it sinks in) I sincerely appreciate your support and value this forum immensely.
Hatwindowwinow4 you definitely should NOT wait to start treating your serious B12 deficiency, for any reason!!! If anything, B12 injections will help your body fight your serious flu. I have low IgA in addition to pernicious anemia and before I started regular B12 injections, I would get really persistent sinus infections, laryngitis and once or twice I had bronchitis too. Although I am still very careful to avoid respiratory illness because of my mucosal vulnerability (low IgA), I seem to rebound amazingly quickly if I do get sick compared to the last several years leading up to my diagnosis.
If at all possible, I would think you would need every other day injections for quite some time. Hang in there, SO glad you are reaching out on this forum!!
IgA is immunoglobulin A - we have several kinds of immunoglobulin, and each kind has a specific immune function or job. Immunoglobulin A is responsible for defending your mucous membranes (eyes, ears, nose, lungs, digestive and reproductive tracts) and to a lesser extent your skin.
Having low or 'deficient' IgA is an established risk factor in having increased prevalence of autoimmune disease as well as lot's of different mucosal infections. Hope this helps!
Makes sense as to why I get so many lung problems I.e Bronchial Asthma,also numerous chest Infections,or Pneumonia was my last one. Thank you kind regards Debs xx
So sorry to hear about your pneumonia, asthma, and chest infections 😮💨 You could ask to have your IgA tested - it's a blood test. Because you have such a history of severe respiratory infections (and autoimmune disease) I would think the doctor/insurance company would be open to it. Because my IgA is lower than it should be, my doctor gave me a pneumonia vaccine (I'm 36) and I'm able to get covid boosters in advance because I'm considered to have a primary immune deficiency.
Also, I'm not sure where you live but in the U.S. a primary immune deficiency is considered a protected disability. I was sick quite a bit when I was working and it got stressful to miss so many days, if I had known back then that I had low IgA I probably could have used FMLA or gotten some accommodations.
I've also been flagged as someone who would need remdesivir if I get covid. Labels aren't always helpful, but sometimes they do allow to get more support. Might be worth getting tested. Sending hugs
I live in the United Kingdom,at the moment getting an appointment with a doctor is as rare as hens teeth!!!!! Never mind asking for a IgA blood test, I appreciate Your help and support Cobalt1312 many thanks Debbie X
Any kind of viral infection depletes B12. Seems like you were already low and it became worse with the flu. As others have said, low B12 will make it difficult to fight the flu, so you need to get B12 fixed as soon as possible. Once-a-week may be sufficient, but you may need some loading doses before going to it. Generally, you need a few daily or EOD injections before going to weekly, but if weekly is all you can get, it will take a little more time to recover, but you eventually will. After a few injections, even weekly ones, your B12 levels should be fine and then you just need to maintain the B12 levels for full recovery. You should take such weekly injections till you fully recover after which you can try to reduce the frequency. Good luck!
The way I look at it is there is no rationale for not treating with B12 injections every other day. As long as all cofactors are monitored. The risk of not treating with B12 every other day far out weigh any risk of injecting every other day. Not minimizing your suffering or the difficulty of understanding for you right now but it is a simple risk versus benefit analysis, that GPs typically cannot do.
Your symptoms of flu and then bronchitis (chronic cough) are spot on to how I started. That's what I thought is was and my wife and I argued over going to hospital as I kept saying I'd be fine. So finally when I got terribly worse I went and was diagnosed with bronchitis. I proudly went home and told my wife "see I told you so!" Lol the joke was on me though. the cough kept getting worse so I went again and that's when they found my B12 to be severely low at 70 pg/mL. that's here in the US where the normal range is 232 -1245 pg/mL.
That was back in January 2020. I've done a lot of research since and found your symptoms of flu and chronic cough, along with mine and many others to be very consistent with B12D. This cough is caused by a "sensory neuropathy" of the laryngopharyngeal nerve.
Don't fret too much as with B12 treatment this will go away it will just take some time to heal. Here are a few references.
Vitamin B12 Deficiency Implicated in Chronic Unexplained Cough
Thank you, this is very helpful. This should be more widely known. I’m sorry you also went through this. It is especially interesting as I have had a chronic cough with little respite for a couple of years. Perhaps this accounts for my low B12 levels now and my bronchitis was the final straw before the more severe neuropathy began.
Yes, the chronic cough was my final straw. That's when I totally crashed. I had been fighting and ignoring my symptoms for years which is not uncommon with this condition I've learned since the symptoms come on so gradually you just sort of get used to them,
You can read my story here, I think you might find many similarities.
Start on installment 01 (under each title) or prologue
rexwiig.substack.com
You can either subscribe or not (I'm keeping all subscriptions free so if you choose that just select Free all the way to the right and ignore the other screens just select at a later time. That way you will get any updates dropped into your inbox.
Also, you will find that most doctors have no clue regarding this illness or I'd rather call it a condition.
You are so right Rexz. My physical symptoms came on so slowly that I just thought 'oh well, I'm getting old'. The fact that I was also suffering from depression and confused thinking (more B12D symptoms ) didn't help. My partner kept telling me to go and see my GP but I couldn't be bothered. I was a lost cause. And I think this sort of thing happens to so many of us on the forum.
'Luckily' I had a seizure that frightened me so much that I had to start investigating what was wrong with me and the rest is history.
Looking back it was the best thing that happened. My partner of 40 years was on the verge of leaving me - I was that unpleasant to live with. He was so relieved when I changed back to my normal easygoing self.
I lot of us self-inject (I get my husband to give me shots). It is a lot more convenient than having to go to the doctor every other day. If you started doing that, then you could even try daily shots. It sounds like you are in bad shape- much worse than I have ever been in because my pernicious anemia was caught sooner. Very best wishes for a speedy recovery!
Welcome here. I am so very sorry to learn. You are on a journey and it really is going to take time. There are no quick fixes, the body recovers at its own rate and it will not like it if you push it too much.
So you had bronchitis. Now this is very important, you know the date of onset. The diagnosis was given at [time] [date] by [name of GP] at [GP Surgery] and whether you were treated with any medication [dose] [name of drug ] and route.
At [time] [date] by [a phlebotomist ] at [GP Surgery] for blood tests. Name those blood tests and get hard copies. In writing.
At [time] [date] by [ name of person running tests in laboratory ] found vitamin B12 deficiency at 36 mg/L. It flagged the computer system.
At [time] [date] after GP reviewed your flagged blood result and you were commenced on 1mg/ml of Hydroxycobalamin intramuscularly. First dose was given [time] [date] [name of nurse] at [GP Surgery].
Please keep a diary of your appointments and interactions with Health Professionals.
Please keep a diary of your symptoms.
When you put information in logical order, Clinicians have betterDecision making Skills.
You have had a massive systemic insult (medical speak for biological event whether that is an illness/disease/condition, operation or accident). It impacted your immune system.
70% of the immune system is in the gut. Pernicious Anaemia/Autoimmune Metaplastic Atrophic Gastritis/Vitamin B12 Deficiency is a disease/condition which originates in the gut and has haematological (blood) and neurological (brain, spine, nerves) involvement. So, it affects every system.
Your symptoms are unique to you. In medical speak it is called Clinical Presentation.
Currently you are doing something called Pacing to manage your severe Fatigue. Please see the 12 Spoons Theory for ways to manage Energy Impairment
Many of us take a multivitamin and minerals as well. How is :-
1) Your appetite ?
2) What foods can you eat ?
3) Have you noticed that you have gone off certain foods ?
Your body does need rest but it needs essential nutrients to function. This is a massive learning curve for you and your GP. There is no quick fix and patience is key. We are here to support you. Many of us have spent 20+ hours in bed for months, year.
Pernicious Anaemia/Autoimmune Metaplastic Atrophic Gastritis/Vitamin B12 Deficiency is a serious condition but you have come to right place and we will help you as much as we can. Unfortunately, you have a double whammy of Bronchitis and B12D so, it is gently does it because of poor stamina and neurological symptoms.
Hi, thank you for your help. I have taken note of what interaction I have had with the doctors. I still have a heavy chest from my flu which is uncomfortable but perhaps this will ease as my B12 levels go up. I read closely the link on pacing, I will try to do this as I have been pushing myself.
Please note I am a qualified Midwife and I would tell you, Come on lovely, snuggle down and rest.
Please ask family and friends for help, like housework, making a hot drink or fixing something light to eat. Chicken soup is a recommend, if you are not vegetarian. There is an ingredient in it that helps with congestion. I cannot remember the name because of brain fog. 🤣
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