I must confess, about 3 months ago, I didn’t even know what b12 was! But I can only apologise for the essay you’re about to endure.
My story is a fairly long and often confusing one but the upshot is, about 10/11 weeks ago, I began with what seems now to be a panic attack in work accompanied (maybe caused) by a tingling in my left hand.
I was treated for high BP but that quite clearly wasn’t the cause because, although my BP was high at the time, it was pretty obviously cause I was in a state of shock and panic.
When I started the BP medication, I started getting twitches in my lower calves and I put this down to the meds as I’d never really experienced it before. I also had random cold hands and feet, sometimes just one finger would be cold and the rest not. I’d never experienced this before so again, I attributed it to the medicine.
However, after coming off the medication and with the symptoms still there, I went back to the doctor to explain the situation.
He explained that he would do a full blood test and mentioned he would try to rule out Celiac and something called a b12 deficiency.
I have since had another blood test done in the hospital (they stated that the results of a test sample which waits around for a few hours can coagulate and become unreliable?).
Anyway, the results are in. I confess that I don’t know the levels but I received a text from my doctor saying my b12 levels are “reduced” and I am now on cyanocobalamin for 2 months twice a day. I am supposed to get my levels rechecked after that. The hospital GP also said to me at the time that my Vit D levels were “really low” and that I may need supplementation for a week to get my levels up but I didn’t hear anything about that from my first blood test and my actual doctor. I haven’t heard anything about the stool sample I submitted so assume that was OK.
Btw, I have had other symptoms since this including an occasional sharp pain in both forearms and near the elbow, random thumb and finger pain, leg cramps/pain/tingling, nausea and a loss of appetite, finger tingling, random jerky movements, random foot pain when getting out of bed, leg/arm weakness, feeling like I’m not walking straight, side pain, headaches/dizziness/cheek pain (although this could be a sinus infection), fatigue and apathy, back and neck discomfort, potential brain fog etc. I’ve also had tinnitus when waking up for a bit before this as well but that has been a bit of and off problem with me for a good while. All of these symptoms seem to come and go at will.
I am now really panicking cause I have googled symptoms and I know that this can also be synonymous with some really nasty stuff. I just wanted to sort of share my story and see what people’s thoughts were if that’s OK? This whole situation is really affecting my stress and sleep levels given that I’ve never really been ill in my whole life before. I’ve never been diagnosed with anxiety but I am now pretty sure I have some of disorder with all this going on.
For reference, I am a 33 year old male from the UK.
Thankyou for reading. I look forward to any replies. Hope you all had a good Christmas and New Year.
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WanderingCrust
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50mcg twice a day won't do much if you have absorption problems. Go for injections or at least 1000mcg twice a day, else problems may only increase going forward. Good luck!
Welcome here. One of the best things you can do is get copies of ALL results and tests. Have times, dates, names of doctors and who you saw, what they said and when.
Your Health Data is 50 times more valuable than your credit or debit card details.
Like Nackapan said Keep a symptoms diary and know what your blood results and ranges are in your particular area of the U.K.
Pernicious Anaemia/B12 deficiency and vitamin D deficiency impact the brain and oxygen levels so symptoms can include fatigue, low mood, irritability. These are NOT a ‘Mental Health disorder.’ PA/B12D has neurological involvement.
WanderingCrust, Out of interest, which BP medication did you take? The early part of you story is very similar to mine and my B12 deficiency only came to light after I’d been on medication for high BP. I was prescribed Amlodopine which I took for 6 weeks. I’m no longer taking that medication as my BP was deemed to be OK but the symptoms that are now being attributed to B12 deficiency (and pernicious anaemia) persist, very specifically the tingling and dumbness in feet and hands. My story is further complicated as I was also prescribed Trimethoprim for a urinary infection around the same time and I’ve read that it can impact B12 levels. I’ve long suspected that one or both of those drugs had some effect on my B12 levels, especially as my B12 levels improved naturally over a few months before I was given any B12 injections or took supplements. Possibly because my body had flushed out those powerful drugs and my gut was returning to normal.
To add, I could have written exactly the same paragraph as you on my current symptoms. They are spookily similar. You mention cheek pain. I have that too, although it is more a tingling sensation from jaw to temple and on my left side only. I have seen a private ENT consultant as I thought it was sinus related but he couldn’t find anything. I’ve also seen my dentist as it sometimes feels like tooth pain. At present I’m considering it to be B12 related.
Funnily enough, I was on Amlopodine myself for about 2/3 weeks and then Ramipril for another 2 weeks or so. I had awful side effects on both but especially on the Amlopodine.
As fate would have it, I have also previously had a really bad water infection and had to take tablets for it although this was around 5 years ago now.
Sorry to hear about your symptoms. Tbh, my cheek issue is more of a weird feeling than pain as you describe. I am quite sure I had some sort of ear infection or fluid build up so I am off to get that checked out next week to see if they can find anything.
I’ve had had an eye test and paid for the extra health check to be done behind my eyes to check for anything etc. I could have swore my vision had changed and I was getting paranoid about it. Turns out, this was all fine.
One of the worst symptoms I’ve had (and forgot to mention) was for about 4 days straight, I’d wake up and my right wrist and hand was numb, as though I’d slept on it all night. I’ve never had this before. Thankfully, that appears to have subsided now. What’s peculiar about this is the overall tingling started in my left hand but the feelings tend to intermittently change between one side or the other (or both). Same with my legs too.
My head issues also include what feels like an ear infection. Popping, buzzing and whistling in my ears. My long running tinnitus has been worse too.
My left eye sight has definitely deteriorated, despite having a new glasses prescription just 6 months ago. I believe it has a bearing on my headaches and dizzy feeling. I’m having my eyes tested and examined again next week. My vision is better some days than others.
I too wake up with hands and arms numb. Which I initially put down to lying in a strange position but it was too frequent and not something I’d experienced before. Likewise my feet numbness which is more persistent.
But these symptoms are not constant . They come and go with no obvious triggers. I’ve kept a symptoms diary for many months now and I can’t spot any clear patterns based on what I do or eat that results in good and bad days. I also have anxiety that never troubled me before.
For now I’m living with the assumption that I have B12 deficiency and pernicious anaemia and that causes the symptoms. I’m still getting to the right levels of B12 medication (injections) through my GP and neurologist.
But I have a lingering view that Amlodipine and/or Trimethoprim kicked this off as I was perfectly healthy with none of the current symptoms before I took those drugs. GPs readily prescribe a lot of strong drugs and they no doubt help some people but I’m not sure all the side effects are really understood. I speak to so many people that are struggling with high BP medication and statins, but the link to B12 deficiency is possibly being missed.
The link between medication and poor b12 absorption does seem to be a valid one and who knows, maybe there is something in it regarding the BP tablets.
The numbness is very annoying but as you say, I’ve never had this before. I had left hand tingling initially but this can be a whole host of things. I am currently struggling with a rotten cold and I am pretty sure I have an ear/sinus issue so hoping I can get that sorted sooner rather than later.
I assume you’re in the UK? Are you currently receiving the injections/Neurologist on the NHS? Also, have you had an MRI yet? I’m scared that I have something else nasty going on.
Out of curiosity, can I ask what your levels were and how long you’ve been having injections? Also, was your Vit D low?
Yes, I’m in the UK and being treated under the NHS. My GP arranged the initial 6 loading injections of B12 which I completed early last November. I’m now on the standard 3 monthly repeat injection with the first due next month. This is the protocol most GPs follow. I’m not saying it’s right. My B12 was 80 ng /l in a range 120-900, so off the bottom of the scale. But a later test, before I had any injections, showed some improvement into the lower end of the range which suggested that I was absorbing some B12, which could be contrary to having pernicious anaemia which was diagnosed about the same time.
Before my B12 deficiency and pernicious anaemia was diagnosed I was already seeing a NHS neurologist for my symptoms. I had an MRI scan last year and I recently had a DaTscan of my brain. Both appear to rule out other conditions such as MS and Parkinson’s Disease. The neurologist doesn’t see anything untoward from those scans and as a result he is just now (this week) taking the B12 situation more seriously and yesterday agreed to increase the B12 injections to monthly. This was in consultation with a haematologist but both are questioning the pernicious anaemia test and diagnosis. I’m currently unsure whether I have pernicious anaemia or not, but B12 deficiency seems obvious. I’ll continue to assume I have PA for now.
As you can see this is a complex and somewhat confusing matter. As others have and will say, it’s badly understood across the medical profession. You may need to be quite demanding with your GP and get them to refer you to specialists (neurology or haematology for example) and to get you on injections rather than tablets. Further B12 blood tests may not help now that you are on tablets. You may have to educate them! In just a few months I clearly know more about this than my GP and that has caused some difficult conversations, but I’m slowly getting then round to my way of thinking! But it’s looking like a long slow path.
I’m wondering whether your levels just led them to injecting you whereas mine are maybe not that low, which is why they have gone down the medication route?
Hoping you can get the answers you need. It does sound like a really complex area so it’s not surprising that doctors aren’t well up on this as some other health conditions.
It sounds like you are being taken seriously though, which is certainly encouraging and a lot more than some others will be able to say I’m sure.
I think my GP panicked as that initial blood test had been missed for 3 months and it was very low! In hindsight I think another test should have been done before I had any injections. But a separate blood test appeared to confirm pernicious anaemia so here I am. But it’s taken 3 months of pushing to get to being taken seriously.
I also think the very high prevalence of B12 deficiency is having a bearing open how it’s treated, no doubt for cost reasons. If you have had no diagnosis that says there is a medical condition stopping you absorbing B12, such as pernicious anaemia, then the NHS might go down the easiest and cheapest route which is tablets. But your symptoms might dictate an underlying problem that needs to be investigated so that you get the right treatment. You might need to push this with your GP.
I fear that lifestyle choices leading to B12 deficiency are having a role to play in the NHS position which means that those with more serious conditions are not getting the support they need. It’s a messy situation.
If you are well enough then have a bit of a read about the Nervous System (Wikipedia or Health line). So, you understand a baby bit about anatomy. Here is some reading material.
These are ‘major’ nerves but we have 7 trillion of them. One symptom which you describe that jaw to temple tingling sensation can be Trigeminal Neuralgia (TGN). However, as you describe it as ‘tingling’ and bearable then it is sounds manageable.
Other people who experience TGN it can be absolutely unbearable. There is a dedicated charity for it. My worst attack was 10 hours and I dread to think what my neighbours must have thought because of the sounds I was making.
Thanks Narwhal, I’ve already explored Trigeminal Neuralgia but not with any medical practitioner. About 10 months ago I had a one-off sudden pain up the left side of my face. Lasted less than a second. It’s never happened again and I have no lasting pain. But there is an occasional but manageable tingling sensation that seems to have occurred since that original episode. This happened around the time I was starting to have symptoms that are now being attributed to B12 deficiency & PA (both diagnosed some 6 months later), I was struggling with high BP medication, and had been on antibiotics. All in all a lot of moving parts that are not easy to rationalise as to what caused what. I went from being generally healthy to very unwell over a very short period of time. I had no PA symptoms prior to this.
I’m going off on a tangent here but I have long suspected that either the Amlodopine or Trimethoprim I’d been taking had some effect on kicking off what I now know as B12 deficiency leading to the PA diagnosis. They could have caused it as they are powerful drugs with many side effects, some affecting the gut. The link to Amlodopine as mentioned by the original poster on this thread increases my suspicions.
I’ve done research in recent days and there are several records of a link between Trimethoprim and B12 deficiency, some NHS areas list it explicitly in their treatment guidance. But the link to Amlodopine is more obscure but is suggested.
Both those drugs are routinely prescribed by GPs. They are often the first ‘go to’ drugs for high BP and urinary infections. I’m wondering if such medications are part of the reason why there appears to be such a high prevalence of B12 deficiency with no obvious cause. By this I mean obvious causes such as PA and other recognised conditions, or through lifestyle (veganism, heavy drinking etc.) .
Food for thought?
(to add, I’ve not taken any medication stronger than a paracetamol since last May. I’m not on any prescribed medication other than my B12 injections. This was a deliberate decision on my part (before my B12 deficiency was spotted) to try to restore my gut health following that earlier strong medication. My B12/PA symptoms persist and I’m hopeful that they will stabilise or improve with the injections. But I’m open to other medication (but not antidepressants) if it helps to get me back to where I was health-wise less than a year ago)
Yes, people can experience feeling like droopiness around the eye. It is usually one-sided (unilateral) because we are not symmetrical. We have a dominant hand and leg. We do not hold our bodies in perfect alignment. We cock our heads to a particular side. We have a preference to our sleeping positions. Plus, there are very minor discrepancies in sizes of right and left hands, feet, legs, muscles etc.
Therefore, all these very small anomalies impact our bodies.
I am going to add some very helpful links at the bottom.
Unless you are a vegan or vegetarian (b12 deficiency due to diet) be careful with your doctor's 'knowledge'. He or she is not alone in being uneducated about this deficiency. Any health professional that truly understands are the minority.
(EDIT: We need to note that just because one is a vegan or vegetarian that does not mean they can not have an absorption issue in tandem)
This vitamin deficiency does not work like most. It is not test -oh normal range now - done! If there is an unfixable absorption issue it is supplementation for life. And it does not matter what the reading is during the supplementation re:testing. Some people read over 2000 when supplementing. Your symptoms are valid re: the deficiency. It is head to toe what it takes from your body. Some symptoms are straightforward, some can seem utterly bizarre.
The finding it hard to walk straight is a classic b12 deficiency symptom. It is called proprioception. It literally means the inability to judge space. A friend used to yell at me "Why are you always walking into me, can you not walk a straight line?". My sister-in-law would routinely call me clumsy. Both loving people, laughing.
Read these links thoroughly, they're gold & contain medical footnotes. They will help you understand it all-
I’ve had all the same symptoms and it is incredibly worrying. Inevitably you begin to worry about what wrong with your brain. Make sure you have a copy of all your blood tests and check the levels as gps never worry about levels unless they are in the red, so keep an eye and when you have repeats look at trends, particularly vit d, folate, ferritin
I also get extra bloods which test active b12, as once you are supplementing I understand ordinary b12 tests are irrelevant as they just show high levels but you still don’t know if you are absorbing it
Look at Medichecks, blue horizon amongst others. I use medichecks as I also have a thyroid problem
I’m sure you will be offered further testing to rule out other causes ( and I know you’re worrying about neurological diseases brain tumours etc as most of us have done)
If not and you’re worrying then tell gp what you think and ask for further help.
Have they tested for pernicious anaemia specifically? Check for coeliac disease? If it is PA tablets won’t work as well and you need injections
Any other member of your family with PA or other autoimmune diseases such as hypothyroidism?
It may take a while to get to the bottom of things and it can be hard to believe a vitamin deficiency can cause such diverse and dramatic symptoms
Educate yourself on here and remember you will know more than the majority of gps so don’t be surprised if you end up having to tell them what you need!
Thanks for your message. I am sure Celiac was tested for and ruled out (assuming this we didn’t hear anything else about it). As far as I know, it was just b12 levels that were tested and nothing else such as PA.
My cousin has to have three monthly b12 injections as her hair started falling out a few years ago.
I know my Nan on my mums side had a thyroid issue but not sure of any specifics. I have had my thyroids checked along with liver and kidney function etc and everything seems to be fine on that front.
I have had digestion issues for a good few years now, eg bloating, indigestion, bad stomach acid etc and I am find myself very gassy and bloated at the moment. Not sure if this is stress though.
Hoping I can get to the bottom of everything and it’s nothing nasty, I am definitely worrying and maybe even a little bit more than I should.
My son who is 23 has similar digestive issues and this may be part of the picture for you as b12 is absorbed in the small intestine. He saw someone who specialises in functional nutrition and changed his diet and took supplements to support his digestion and saw a good improvement.
Keep asking questions here and of your doctor, you need to become your own detective and then you can take control of your treatment don’t you leave it to gp to work it all out however good they are
It does sound like there is some relevant history in your family, you’ve made a good start coming here, I would be seriously unwell without the information and advice I’ve received here, you don’t have to take everything as gospel but there is a lot of knowledge you won’t find out from gp
I had very similar symptoms to you, the first thing I really noticed was pins and needles in my right hand and high anxiety levels alongside it. I went on to develop more and more symptoms.
I was also prescribed tablets to begin with but luckily I had a friend with similar B12 levels who had just been put on injections so I was aware of that option and went back to the doctor. I was immediately put on injections as this time I was able to point out all of the associated symptoms (I didn’t realise the connection until I started reading up).
I never got tested for PA but I’m happy with my treatment regime now (monthly injections) and just assume that I do have it.
The good news is that a B12 deficiency is highly treatable, it just takes a while to figure out what frequency you need and the recovery process is slow. I still have anxiety intermittently but I think that is probably a separate issue as well as a symptom. I have had CBT for that and it was very helpful.
Yes, I’m very lucky with my GP surgery. I was originally on 3 monthly, then managed to convince them to go to 2 monthly as my symptoms kept coming back after about 5 weeks, then we got a new nurse who actually suggested I should try monthly. I was told the MS patients get monthly injections and there was no reason I shouldn’t too. I’m not sure how knowledgeable my GP is about B12 deficiency but she does at least take it seriously.
When I was at my worst, I would be prone to infections, slow to heal and so was given antibiotics - to which I reacted badly on each occasion. The effects were the same for both Metronidazole and Doxycycline: room-spinning vertigo and constant headache.
I have two lists of drugs that deplete or interact with B12:
University of Maryland Medical Center: Drugs that Deplete: Vitamin B12 (Cobalamin) umm.edu/health/medical
(Both of these are American and a few years old now, but I still use them for guidance if I am likely to be prescribed any drugs from GP or dentist.)
I can't find Amlodipine on either list, but this may be marketed under a different name in the US (?) but Trimethroprim appears on the Maryland list. deniseinmilden , a forum member here, warned me not to take this one as well - and that's good enough for me !
Incidentally, I get sinus infection and was given Flixonase and Dymista nasal spray - both of which contain Fluticasone which, as a corticosteroid, is on the list too.
So it might be worth Googling and printing off a list - you may well find a more comprehensive, more up-to-date medical list with drug names more relevant to UK.
In addition to your low b12 I wonder if your panic attack at work might be indicative of a more chronic state of anxiety, leading to hyperventilation or over breathing.
Hyperventilation can cause too much carbon dioxide to be flushed out of your system, raising blood pH and leading to painful muscle contractions, tingling, headaches, breathlessness- all of which increase the anxiety and perpetuate the process.
It can become a subconscious habit and at the extreme can cause tetany - spasms of muscles and blood vessels.
If this is the cause the key thing is regulate your breathing - breathing into a paper bag so that you take in some of the carbon dioxide you have flushed out is a helpful short term aid to rebalance your blood acid level.
I experienced all of this in my 20s and was rushed to the doctor from work convinced that I was having a heart attack.
Apologies if this is a rambling response, but I really think people don’t appreciate how severe the physical symptoms of anxiety can be. Low b12 is major cause of anxiety and I hope you get the treatment you need. If your gp is unhelpful you are in the right place to begin a process of self help.
I might add that b12 wasn’t even considered at the time. What followed were prescriptions for Valium and antidepressants which just masked my symptoms and led to further problems.
I think that we have to be cautious regarding signs and symptoms of the lungs. A medically qualified person can distinguish between a biological problem and an emotional one. The nerves to the lungs are the pulmonary plexus and the phrenic nerve and they can go into spasm. These can be from simple things like cold air or very minor exertion. In B12 deficiency/Pernicious Anaemia there is lack of oxygen to the whole of the body and brain’s tissues and blood.
The person is not having a panic attack per se. They are experiencing ‘air hunger’ or dyspnea (medical speak). They are physically ill and in a hospital setting we administer oxygen via face mask. Then we would consider administering other medication to open up the airways to get that all important oxygen in.
One of B12 and iron’s roles in the blood is to transport oxygen around the body. People with COPD, asthma, those with lung cancer, Congestive Heart Failure can panic because they struggle to catch their breath. They are physically ill and definitely do not need antidepressants or highly addictive benzodiazepines.
yes I did not mean to be misleading or over simplify, just postulating that b12 deficiency could in itself cause chronic anxiety and a habit of hyperventilation. In addition to all the other related symptoms you list related to low oxygen levels caused directly by PA/b12 deficiency.
I know I came across as being pedantic. There are many wonderful organisations who campaign for better recognition of physical health diseases which I keep abreast of.
Hundreds of thousands have massive delays in diagnoses because they are not believed, not listened to and all too often they been told ‘It is psychosomatic, they need more exercise and are put on antidepressants.’
Then because they have not been listened to and are becoming sicker, they collapse in the streets or home. They are rushed into hospitals which puts pressure on hospitals. Then finally it is realised they are seriously ill but it could have been easily preventable in the first place, if primary care physicians/G.P.s had listened in the first place.
They make assumptions especially in women’s health. Believing that we are too emotional or as one male doctor told a woman, ‘Your pretty little head is thinking too much.’
She has lupus and it took 10 years to diagnose. Her shortness of breath was as a consequence of shrinking of her lungs and inflammation.
Autoimmune diseases usually comes in pairs but as we age we collect them.
I had very similar symptoms too when I was found to have very low b12.
I was put on injections with loading doses to start with then every 3 months to now 2 1/2
Low vitamin D can also cause what your describing. From experience last year, I got to the point where the bone pain and cramps in my legs I could not walk at all and my mental health was all over the place.
All is good now from having high strength vitamin D for a week and symptoms improved.
Can you chase the things up from your doctor?
Has your gp tested your folate acid levels?
This too can cause symptoms.
If your gp won't budge on the injections, I recommend asking to see an endocrinologist who specialises in b12
I hope you get answers, and get the help you need.
The symptoms you describe are Neurological, Neuropsychiatric and Gastrointestinal and "all" can be attributed to B12D. Neurological symptoms need to be treated w/ B12 injections as soon as possible to prevent further damage. Nice guidelines will support such treatment. I would request you have an EGD done to assess your gastro issues which are associate to your lack of appetite & nausea. B12D is very manageable if on the correct treatment and have a doctor who understands the condition. B12 levels are an unsafe way to manage this condition unless low. This condition is managed by symptoms "regardless" of your B12 level. Oral supplements will increase the serum B12 level however that does not mean the B12 is in your cells where it needs to be to correct the neuro & gastro issues..
B12 deficiency is not a problem with blood chemistry. Therefore, nothing is to be gained by further blood tests for serum B12 levels. We know that serum B12 levels will be high in a person who is injecting B12; however, that is not an indication that anything is corrected. The only indications that are helpful are improvement in symptoms. For patients with B12 deficiency with neurological symptoms, injections should continue, no less than twice a week, until there is no further improvement (however slow) in symptoms.
It's important to understand that B12 deficiency is not one thing, it is two things: one, that some doctors are aware of, is B12 deficiency with hematological symptoms (anemia); the second, which many fewer doctors understand, and much more severe and much more difficult to treat, is B12 deficiency with neurological symptoms. That is why articles in medical journals by informed authors differentiate recommended treatment of patients with neurological symptoms from treatment of patients without neurological symptoms.
A very good summary of B12 deficiency with neurological symptoms:
The first author is also the first author of another, more detailed summary of B12 deficiency with neurological symptoms: "The Many Faces of Cobalamin (Vitamin B12) Deficiency". It too is an excellent source of information on many aspects pertinent to diagnosis and treatment of B12 deficiency with neurological symptoms.
Hi wandering, reading your post was so much like my story. I know you say you have not been ill in the past but I think if you look back at many of your symptoms (palpitations, cold hands and feet, pins and needles etc) I bet you will realise that you had them but never really linked them to feeling ill, just passed them off as tiredness or lying in an awkward position? I knew my mom had suffered with PA since I was 15 (now 46) and I was diagnosed with anemia at 16 with frequent fainting spells, but it wasn't until she passed away 10 yrs ago and I went to my GP with a massive list of symptoms including all the above that my diagnosis story began! I was given fluoxetine (prozac essentially), multiple courses of anitbiotics, countless blood tests (but no active blood tests), leukemia and MS tests, all of which were either negative or had no effect
This went on for 5 years, with the 2 years me asking them for a test for PA as I had learnt that my cousin was almost wheelchair bound with it and knowing that my mom had suffered with it and also being told that my 7 yr old daughter had enlarged red blood cells 3 yrs before!
It turned out that it had been confirmed 2 yrs previously that I had megaloblastic anemia (enlarged red blood cells!) and had been treated with folate tablets! But no one thought to test for PA! The NHS money that was wasted over those 2 years just shocks me! I was only diagnosed after getting shingles and me telling the doctor that people were concerned about me losing weight and she checked my lymph nodes, all of them were swollen and the look of sheer panic in her eyes will never leave me She thought I had leukemia and ordered a full blood test resulting in her calling me 2 days later telling me to come straight into the surgery for a B12 injection as my B12 was dangerously low! I got a massive apology from 3 of the GP's in my surgery! 2 of the them had no real knowledge of PA (1 page of learning through 7 yrs of training!!) After 6 loading doses I have to say I did feel an improvement but 12 weekly injections since (diagnosed 2018) are just not enough! Symptoms just get worse and worse month by month so please make sure you push your GP to make sure you are receiving the correct treatment because although you don't feel you were ill before this I really don't want you to feel that this diagnosis is going to be the cure we are all fighting to be seen and heard with PA and it is frustrating and annoying that many autoimmune diseases are recognised (symptoms or not) but PA is not recognised as an autoimmune disease in itself only the severity of the symptoms and as we all know, these are not only hard to describe but also vary so much from day to day as well as region to region depending on the GP/NHS trust you are under
Just wanted to update everyone on what’s been going on in case this helps anyone in the future.
I decided to stay the course with the cyanocobalamin tablets as prescribed by the doctor for 2 months.
Strange things have happened to me physically since then.
For the longest time (years but not sure how many), the hair on my shins has not grown. I am generally a hairy person but it just stopped growing there one day and all that was there previously must have presumably shed.
Anyway, this hair is now growing back in droves. Indeed, hair is starting to grow all over my body in places where I was previously lacking or didn’t have any at all. Existing hair is also thickening up and hair on my head is even starting to grow back (I’m bald).
This leads me to believe that this is the b12 working. This also leads me to believe that I have been low/deficient for a very long time.
My memory has also improved fairly significantly, something that I wasn’t really aware that was an issue until now. The brain fog I had is also much better and seems to be improving all the time.
Another thing I have noticed is that I have full motor function once again in my last three toes on each foot. Again, I wasn’t really aware of them being stiff until now but I can move them all at will now. Again, this seems to be an indicator is the b12 working but also that I’ve needed this for a long time.
My mood is also much better. My Vit D was also low (more on that later) and I’ve been taking high strength supplements of that so there’s a chance that’s linked to that too.
The most alarming thing is that my nervous system seems to be back to “normal”. Again, I didn’t identify this as an issue but it appears that I’ve been emotionally numb for quite a while, not getting nervous or excited for anything etc. And these feelings have started coming back recently, albeit very gradually. Not sure if I’ve explained that very well! Again, for this to be affected, I feel like I must have been low for a long time.
I recently went to the doctor to have my bloods retested, although I was told that it can take a few months from now until my levels will have properly risen, which may render the results of this last test inconsequential.
I asked what my levels were when tested and they were:
B12 133
Vit D 16.2
My Vit D was never mentioned by my doctor as being low, it was only cause of the following blood test in the hospital that I knew this. I asked the nurse why the doctor would have mentioned this and she said he was probably just concentrating on my b12. Pretty poor that if you ask me.
Anyway, she explained that the range for my area is very low in terms of b12 (150) and the fact that was under that meant I was pretty deficient.
I did a bit of digging and I am now under the impression that anything below 150 requires loading injections (in terms of the NHS). Am I mistaken there? I feel like my case was handled pretty poorly tbh.
Anyway, I now have my own supply of 1000mcg and will be taking them from here on out until I’m due my next blood test.
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im absolutely panicking
Vitamin B12 deficient
When should I start to reduce B12 injections?
Feeling Worse After B12 Injection?
Update blood tests negative for B12 deficiency
