Hi im posting for my partner, he's been struggling with symptoms for around 15 years gradually getting worse. GPs kept saying that he has health anxiety. He has an off balance feeling, ear fullness, pressure in head, droppy feelings in his head, strange sensations in his head, headaches, mouth ulcers, fatigue, weakness, muscle pain, painful feet when walking, swollen tongue, feverish, brain fog, shortness of breath, vision problems eye floaters, focusing problem and eyes dancing from side to side, racing heart, strange sensations in body in general, anxious and depressed. Recently we found out there's a family history and convinced GP to test b12 levels they were 123. He started on loading doses and had his first dose 48 hours ago feeling nausea from it no improvement on initial symptoms yet. Hes worrying that all symptoms aren't coming from b12 or that he has brain damage from having it so long and that his symptoms will never get better. Curious if any of these symptoms are familiar to anyone and hoping I can give him some hope for when he will start to feel better. Thanks in advance
Newly diagnosed b12, are these sympto... - Pernicious Anaemi...
Newly diagnosed b12, are these symptoms all b12 deficiency symptoms?
Sounds like B12 issues indeed. After 15 years deficient, I would expect symptoms to worsen during initial treatment as the B12 gets to work and nerves start to repair. I had really bad nausea and dizziness the first month or two of treatment.
Ensure diet and supplementation are adequate, any other deficiencies being corrected etc.
Apologies for delay in replying my partner has had a bad few days so been looking after him and a 4 month old baby. I really appreciate you taking the time to reply. Iv contacted GP practice to ask for folate level results and also asked as he has neurological symtoms and referred to NICE guidelines on injections every other day until improvement stops. He feels so ill and scared he will never get better, he's frightened he has permanent brain damage as he's been made to feel like a hyperchondriac by drs for years.
Yes all sounds horribly familiar to me .Keep up the b12 injections after loading ones stop.
The guidelines are every other day until no more improvement.
A neurology referral useful to rule our anything else.
I had a brain CT and MRI .
Upper Cervical later.
I got worse before better.
Migraines and vertigo in that mix too.
All very scary .
Tell him to hang in there.
Was folate and iron and vit D okay .
May need supplements as it's common thses levels can drop too.
A standard multivit ?
Folic acid if needed now b12 has started . Will be in multuvit.
Get a print off of blood results.
Keep a log of symptoms.
Printout give measurements used for tests with 'in range ' in brackets on the right .
Was an Intrinsic factor antibody test done ?
Shows 50% of those with Pernicious anaemia.
If negative doesn't rule it out .
Other absorption problems are as severe and need the same treatment.
Is his diet okay ?
I found lots of water sipped
Milk juice.
Live yoghurts
Little and often meals .
As lost alot ofweight Initially.
Look up Cawthorne vestibular physiotherapy.
There are eye exercises and a few others to do in bed or sitting .
The nausea is horrid .
Tinnitus and leaden legs may occur.
Everything should slowly improve.
T c
Sorry for late reply hes had a bad few days and I have a little baby to look after also. Iron levels were okay, iv asked about folate levels. As it's NHS I'm guessing they haven't tested vitamin D. Iv quoted the guidelines and asked they continue with injections im waiting for their response. Hes taking a berocca style supplement not sure if that's any good? We are waiting results of instric factor, his dad and grandad had this also so im wondering if its genetic. Hes either not hungry or starving he does eat alot of b12 foods though meat, eggs and milk. He has the Tinnitus already which drives him mad. He's 3 injections in and feeling no better sadly
please advise him that the NICE guidelines state that the alternate days injections should continue until there is no further improvement so please insist they are not stopped at six. They need to continue until he feels better. You will need to be assertive and quote the NICE guidelines to make sure they continue as long as needed.
I have done this thank you fingers crossed they listen im awaiting their response
there symptoms are familiar with many of us. It is very early days in the treatment yet and as already mentioned some symptoms will seem worse as the nerves are healing which usually takes a long time.
Injections every other day should continue until there is no more improvement according to the guidelines given in other replies. You will almost certainly face a battle with the GP on this but do not budge and I hope the outcome of s good.
I have put my foot down stated guidelines and said this was misdiagnosed as health anxiety for two long. Hes too tired to fight them at moment but I won't give up advocating for him
I would look for an alternate cause for the fever. Some eye floaters are normal as we age but an appointment with an optometrist would help you to check if it is something more serious or not. The rest sound like B12 problems to me: there is no harm and possibly immense benefit from continuing the loading doses. But also no harm in ivestigating them. It's possible more than one thing is going on.
Will do for fever. Hes got a fantastic optometrist who's ruled out anything serious. That's what he thinks also but he's so scared I'm doing my best to reassure him at moment I don't want to scare him more. He's petrified that this has done irreversible damage. I'm pushing GP to continue with loading doses. Sadly he's been told its all in his head so long he's lost faith, he feels like no one believes how ill he feels
If he needs some company, let him read posts in this group. There are so many of us who felt really horrible until we got our B12 issues under control. It took about 2 years of feeling bad before my B12 problem was discovered. One way to take back the self control is to self-inject. Or for me, my husband gives me shots. Every other day is recommended while there are still lots of symptoms.
I will do iv been reading some posts out to him which I think helps. Where do you purchase these from please, definitely considering this as think there's going to be a fight with drs after loading doses end. Which is disgusting considering they misdiagnosed him for years and said it was all in his head
I live in Victoria, BC, in Canada. Here is is very easy to get injectable B12. I can get a vial with 10 doses in it and 10 needles without a prescription at any drug store and it is not very expensive ($1.30 per dose). Ask people in this group where to get injectable B12 if you live somewhere else.
I had all those symptoms and many more sadly but gradually after loading doses and many months the symptoms improved. Hang in there
Hi Laura did your off balance feeling go away? Hrs concerned about irreversible damage
It did improve very much. i had to be driven lying down in the back of the car as was so dizzy and had to walk holding on to the walls. The doctor tried the Epley manoeuvre and many things before i was diagnosed with pernicious anaemia. Eventually all the horrible symptoms subsided. i still get tinnitus a week or so before my jab is due(i have jabs 7 weekly) but the numbness, confusion, tiredness, heart racing, memory loss eventually subsided. i still get upset stomach. hope all goes well
All you can do is keep up the b12 injections.Balance does improve.
It's very early days for him.
Time time .
I eas alot worse before better.
Hang in there .
Make sure you are taking a multivit too and extra b12 tablets as b12 naturally low after childbirth.
It's my partner not me I gave birth not him lol. But considering that I might start taking b12 tablets myself. Hes taking a multi vitamin and berocca which I think contains b12 however he has bad Gerd and is on acid tablets so we are thinking he's not absorbing it still awaiting test results to find that out. Can I ask how long it took for your balance to improve and how long before you symptoms got better rather than worse. Hes scared it's done irreversible damage, I think having this so long has given him health anxiety and its hard for him. I try to reassure him but I think because he feels so ill for so long he's struggling to accept its going to get better
"however he has bad Gerd and is on acid tablets "
Whoah, is he on a PPI? Reducing stomach acid will reduce the ability to digest and absorb nutrients. It also increases risk for bacterial infection. It's important to confirm if the GERD is from low or high stomach acid as it can be caused by both.
Piling into the animal foods while also reducing stomach acid is not a great plan, these foods need strong stomach acid to be broken down and to remove the B12 from the protein its attached to, in order for it to be absorbed. It may be helpful to with a good gastro to help discover the causes of the GERD.
Hello, as others have replied, I think it is B12 deficiency.
I had physical, neurological and psychiatricneurological symptoms, in hindsight for at least two decades. I has low serum B12 and low folate. I felt little improvement until last loading dose. I felt worse for about six weeks with glimmers of improvement, then started to feel much better. Basically, everyone is different but healing will happen, although slowly. Low B12 can cause personality changes and anxiety.
You say your husbands eyes move from side to side. There is a possibility that it is Nystagmus . I have nystagmus with oscillopsia but my eyes rapidly move up and down and around. Recently read that acquired nystagmus can be caused by a deficiency such as B12 which will probably disappear over time.
Best wishes.
Going to go find a list of my initial symptoms, that went on for years. Until the deficiency was found. Let him know some still linger, and could be my thyroid, but 80% disappeared with injections over time (some in no time), so do know repair is possible. I went rogue and went every other day for about a year, which was the point I felt no improvement.
Be back.
#3 Note I had a severe vitamin d deficiency at the same point.
And also like most people things got worse for a bit, before they got better.
Nic, these were written while I was recovering and brain fog was insane, so hopefully you can get through it! Insert smile.
Congratulations on your baby. 😊 Make sure you look after yourself.
Oh and when I read the words about your partner with strange sensations I suddenly remembered sitting on the couch about four years ago and going, "I think my head is too heavy for my body" like that made any sense whatsoever. I actually had my bike helmet on and then went "Do you think it's my bike helmet?"
Like THAT made more sense. Laughing. Loudly.
Laugh with me, it is important right now.
Thank you so much for taking the time to reply, your notes were immensely useful my partner was nodding away when I was reading them. So glad to hear your feeling better and my partner can definitely relate to brain fog aswell as many of your other symptoms. Was your balance one of the things that improved, my partner had been struggling for 20 years with this its gradually got worse, it really gets him down. He started off getting referred to ENT then eventually drs started saying it was all in his head and his own family its been absolutely awful for him, we've only been together 3 and a half years and I made him a promise I'd help him get to the bottom of it although it's took me this long I only figured it out a month ago though. I myself have ehlers dhanlos syndrome so I understand what it's like for people not to understand and to not believe or think your crazy. He gets weird sensations in his head like jerks if that makes sense, like he feels like he has brain damage which makes him do everything fast as if he's on the verge of panic. A tight band that goes and just under breast bone that goes up into his shoulders and neck, this doesn't help with breathlessness. He says he's its hard keeping himself upright sometimes. Pain in feet when standing for too long. He was diagnosed with fibromyalgia but we are now thinking he doesn't and the symptoms are coming from this. You mention ear pain? He has alot of fullness in his ears not sure if it's a symptom you can relate to. Sorry for the long message its just he's suffered with this for so long, there's times he's told me he feels like he's dying that's how ill he feels. I guess answers help and it's reassuring for him to hear he's not alone and there's others out there who understand. He could completely relate to what you were saying about your head. Just to top it all off his balance was so bad yesterday he fell off the step at back door and has injured his ankle. He has no luck I just want him to feel better.
Ears - besides feeling like someone was knifing them at times, yes constant fullness. Ear pain went not long after loading doses. Like poof, after years of it. Fullness comes and goes a bit but it was almost daily back then (pre-2019 diagnosis). So huge improvement.
Proprioception is probably part of what he is experiencing re: balance. It is a common b12 symptom. It means the inability to place your body in its space. I was called clumsy on a regular basis., My friend used to regularly yell at me with Why can you not walk in a ______ straight line? Why are you always coming to my side of the sidewalk? I had no clue it was a symptom.
And she really is lovely, laughing. But it used to drive her insane.
Balance, yes. Regular falls. Out of the blue The last one was down subway steps and drove me to become very aggressive with my GP that enough is enough. I used to skip down steps, now I was falling. Like hello. (Falls on simple flat surfaces too)
Foot drop was so bad it even happened on my bike at times. I regularly lost my sandal while riding, more than once.
**No falls since diagnosis and supplementation **So yes better.
But the inability to walk properly & in a straight line remains. Tell him to not take that in too much. I had sepsis twice & I believe through reading medical journals that some of my walking issues lie there.
But gait issues is a primary symptom of b12.
I believe you are also trying to explain 'internal tremors and pulls'. I did not have them but many do. Documented b12 issue.
Listen between my second and third loading dose I had a crazy 24 hours where I literally felt like I was being tasered every twenty minutes. Could not lie down, not sit. Had to pace. These electrical surges, that he probably has, can get worse before they get better. It is thought of as the nerves waking up to be repaired.
My surges and nerve pain were so bad for years and it is literally not an issue anymore. So that is how miraculous healing can be. But some things can heal in years as well. Many of us have.found getting burnt at the stove years in because before we could touch hot things due to nerve damage in our fingertips before supplementation.
I had that sensation near the breast bone, know exactly what you are describing. It either went with b12 or vitamin d shots. Same time. But always err on safety. Never assume it is not something else.
Air hunger is also a telltale sign. I was also accused of sighing all the time, when it is indeed air hunger.
There are some strange subtle signs - cracking corners of mouth, eyelid flickering, black marks above toes, tongue feeling too big for mouth.
I also had one intense hallucination. I was cycling and had to get off my bike on a curve because I literally thought the lake was calling me & I could see my bike riding into (or on?) the lake. I was not depressed. It was a definite hallucination. So know psychiatric symptoms do exist as well.
Okay, do not want to overwhelm you. But I am sure it helps to be understood.
Have little expectations of the doctors, including specialists. It is not negative to do so, it is realistic and can be a more comforting stance.
Thank you so much your words have been a massive help to my partner I think this is the first time in 20 years he has felt understood. Understanding what head jerking was ect. Hes struggling but it's helping knowing he isn't alone in this. We already lost faith in drs a long time ago, my partner went to Dr about 4 months ago this was just before I started looking into b12 deficiency. He complained to Dr about mouth ulcers, exhaustion, off balance ect she said it was anxiety and prescribed sertraline. They've palmed him off for years sadly.
In my experience, most general practitioners encountering B12 deficiency are astoundingly dismissive of mental/psychological symptoms, usually regarding them as being entirely unrelated to the deficiency and somehow arising "out of thin air", even in patients that had no history of mental illness or psychological problems in their entire life prior to the arising of the deficiency.
I believe there is some kind of ancient cartesian dualism going on here where they somehow believe that the mind exists independently of any chemical processes occuring in the body and brain and thus any mental issues could not possibly be traced back to a deficiency of some substance or another. Of course this is absolute garbage and utterly unscientific but somehow many GP's happily embrace this pre-scientific fantasy.
A recent paper explained the biochemistry behind the effect a B12 deficiency may have on neurotransmitters (and thereby on mental states):
"Under the inactivity/deficiency of B12, folate trap may indirectly interrupt the synthesis of the neurotransmitters (i.e. dopamine, noradrenaline, and serotonin). These substances are fundamental for the normal function of the brain, which strongly relates to important mental health disorders. Folate trap could disrupt the supply of formyl groups, which are necessary for de novo synthesis of inosine monophosphate (IMP) [135]. IMP is the precursor of ATP and GTP; the latter is an essential precursor of tetrahydrobiopterin (BH4). BH4 is an essential regulatory cofactor for the biosynthesis of the monoamine transmitters. As depicted in Figure 5.13, the 5-MTHF trap will lead to neurotransmitters synthesis disruption, which manifest in several symptoms of psychological complaints"
Roles and deficit states of Dopamine, Serotonin and Norepinephrine (this shows many familiar symptoms that many with B12 deficiency have experienced):
researchgate.net/profile/Sa...
The paper mentioned above (see page 49)
Did I post these? Concise, informative and come with medical footnotes.
stichtingb12tekort.nl/engli...
youtu.be/QqjyAeOLyKM?si=xhH...
Very informative. My GP called it alarmist,. laughing. At the same time not wanting to hear - and educate herself - beyond the symptom of fatigue. What a loss for her other patients. I ignored and had my symptoms added to my file.
She also argued incessantly that my eye issues were not a b12 deficiency symptom. Despite having some for years and having them disappear with loading doses. And despite - wait for it - being a documented b12 deficiency symptom in medical journals. Unreal.
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