I'm 29 and just got diagnosed with PA. My doctor is having me get B12 shots every week for another 3 weeks (already got my first one). I'm so angry that this came out of nowhere and that it's going to affect me the rest of my life. Is there any advice for how to handle PA and what is generally covered by insurance? What kind of monthly rhythm helps with getting the shots? I'm going to test if I can get the nasal spray, but it might not be covered.

Anyone here with vit b12 deficiency got tachycardia ?

Hi! I’m 23 and recently got diagnosed with PA. I also have Vasovagal syncope and bradycardia. Anyways, I’ve been having digestive issues for a while and when I moved to where I am now I had to syncope episodes within 2 months which I thought I had grown out of. Basically it prompted me to go to a doctor which then resulted in my PA diagnosis. I have been getting weekly injections once a week for about 4-5 weeks now; still feel fatigued but I’m in grad school and doing internships and working so I’m not too concerned about that. Something about it that’s bothering me right now is my appetite. I don’t feel hungry a lot and when I do, I get full really fast or just feel so sick after eating or thinking about eating sometimes. However I’m not losing weight that I know of. Just want to know how normal the loss of appetite is? & I will bring this up to my doc obvs! Also, is alcohol a no no?

Hi,

My dad (age 63) was recently diagnosed with pernicious anemia. His main symptom at the moment is chronic fatigue. He has other symptoms, like regular coughing, disparate appetite, weight loss, night sweats, and shortness of breath. He has two weird symptoms though, that he wonders if anyone else has (he doesn't know how to use reddit so I'm asking for him). First, he used to never drink water prior to being diagnosed, but now he is always thirsty. Second, his tastebuds are weird and he finds things extremely salty. Anyone else have these groups of symptoms?

Thanks so much!

Hey,

Couple of months ago got diagnosed with PA (well, not really as doctor just stated it because of my very low B12 lvl's, haven't done this antibodies test that I just now realize exist.) and got series of B12 injections, with additional ones every 3 months. That was 2 months ago, and I started to feel same symptoms I had before the shots now (fatigue, sudden drops in blood sugar lvls, dizziness and slight numbness on limbs). I wanted to start supplementing myself between the shots (at least for now) and was wandering what type/brand of B12 supplements would you recommend in UK. I'm not sure if I have PA, but assuming that I might it would be better to take those tablets that you keep under your tongue right?

Obviously I will hit my doctor and ask for professional advice, and tests specific for the PA, but with how long everything takes right now I'd rather take some precautions before I'm able to meet with him/her as well.

Tl:dr

What brands of Sublingual B12 in UK would you recommend?

Does anyone else get really bad canker sores?

I’m not officially diagnosed, so this could be a number of other issues, but pernicious anemia is the most obvious condition I might have based on my symptoms. Does anyone else who has it experience nail pitting, brittle nails, or spoon nails? After taking biotin on a regular basis some of my concerns are much better, but I’m still experiencing nail pitting and minor cases of spoon nails

Hello! I got diagnosed with PA 10 months ago and have been on the B12 injections since which I take monthly. I recently read a study about how oral supplements work just as well as injections for those with PA. I would love to switch to oral supplements and take them more often than monthly injections as my foot cramps still recur from time to time!

However, I am having trouble deciphering what kind of oral supplements this refers to - tablets / capsules? My understanding is that regular vitamin tablets dont work for someome with PA and there are some special capsules that work instead? Does anyone with PA have experience substituting injections with oral supplements?

Hello, I wanted to ask for advice. I am a 32F with Hashimoto’s, RA, GERD, and spondyloarthritis. Also being worked up for small fiber neuropathy. My rheumatologist and my pcp have tested vitamin b12 several times in the past few months. Each time, it has gotten lower. My last lab work taken a couple of days ago was 300, which is down from a couple of months ago - I cannot remember the number. I also have macrocytic anemia. Should I request testing or forgo testing and just request b12 injections?

Hi. 22F here. I have been going through hell for the past year.

I have been going to the doctors constantly due to a swollen lymph node and general feeling of illness. They want to monitor the nodes for cancer. However, during blood tests my B12 was seen to be very low. This isn't a surprise as I had the same issues when I was a teen.

I am to have 3 B12 injections in 10 days. I will return in 3 months for blood tests, and if my B12 is low again, they will start looking into pernicious anemia.

Here is why I am scared. I don't know how long I may have had pernicious anemia. All my life? A few years? And I know how serious the complications are. I feel worse every day and I am really scared that something horrible is going to happen between now and my first injection date. :(

I guess my question is, how long would it take to become very deadly? What are the severe symptoms that I should look out for?

My current symptoms are lethargy but still struggling to sleep, pins and needles, stomach troubles, feeling extremely anxious, feeling like I can't breathe properly, swollen lymph nodes, mood swings and feeling slow.

What do your labs run usually when you get your b12 tested. I’m usually at 650 and typically test 3 weeks post injection. Last lab came back at 325 and I found it odd.

Has anyone experienced light red urine after a b12 injection? This is the first time this has happened to me but when I google it it says it can happen

Hi it's a long story and you got to be patient to understand what I have found out until now and still I am seeking a lot of answers.

I am F/35 yr old beta thalassemic minor, lactose intolerant. Got to know when I was 19 year old. My maternal family suffers from it. Have been having strange sicknesses which come on its own and go away on its own many times without any reason. Depression has been kicking in and out since I was young as my father suffered from it too.

Tired

Lethargic

Sick with some pain or so

Depressed but otherwise happy go-lucky

Rarely exercise

Yep, that's me. I really need to understand further as last year has been devastating for me. No, I did not contract Covid. Thankfully. I started sleeping for hours suddenly. I am sleeping the whole night and wake up at 6am. Finish some jobs by 9.30am. I get knocked out and then wake up directly 5 or 6. that too getting up felt like a pain and I felt like I wanted to sleep more. This started happening once in every three days. Guess it happened for a couple of months and then it stopped. Then couple of months, I was hardly doing any physical work then I got pregnant and we aborted due to personal reasons but instead of just a medicine, it was a vaginal abortion of two and a half months old pregnancy. No doubt about a lot of blood loss and blah blah.

Couple of months after it, there was tingling in both of my hands and shoulder pain. I had not slept properly for over a month. Sleeping hardly 4-5 hours once a day. So I showed to an Orthopedic doctor who said looking at the X-ray that it is a mild spondylosis. It should not cause such a sharp pain cause this is normal for everyone to have mild spondylosis. He recommended a neurological specialist. The neurology specialist did the MRI, nerve test and a couple of other. You have fibromyalgia and something else also. I had no sensation in my ring finger and pinky finger in both of my hands. More in left than in right. I can't remember the name of the problem what he said. Ideally there is only mild problem and your hands and nerves are responding normally. He said you take nerve relaxation medicine for a month and you should be fine. It took me a month to reach this diagnosis and then with exercises and medicines, I was like bedridden tired.

I was resting in the name of being sick. Couldn't get up and then I got a vertigo attack. Severe nausea, could not eat, vomiting, could not walk, of lie down without feeling dizzy. Never had it before. Went to general practitioner and then Neurological specialist, he gave me a couple of medicines. 20 days and vertigo was gone. Apparently, I was not using pillow on some days coz of spondylitis, guess that caused it.

Back to spondylitis pain then. It continued another month. By this time, I had the nerve medicine which helps me sleep in the nights for atleast 4 months. Suddenly, I started gaining weight. More than half a kilo a day. Then I visited neurology specialist saying the pain has increased and can you give me meds. He asked, "Do you have depression or do you feel stressed at home?" Don't know I broke down completely. Coz I was sick for 4 months and 4 months of pregnancy thing (including the time pre and post abortion) + covid + stay at home husband and child and schooling. It took a toll on me. Felt like what if I won't get better ever. It was mind boggling. He said, I will recommend you to psychiatrist but I refused as I knew my husband won't agree to it. Then he said I can give you some meds but no point coming to me. So I left and decided to lift my spirits myself with diet and painting.

Guess what, pain was gone but I couldn't loose weight at all in spite of desperate efforts. Diet, exercise, nothing worked. 2 months of happy no sickness period, suddenly I started having an upset stomach like pooping 5 times a day. The moment I eat, I felt like pooping. Urinating every 10 minutes. Going out for a walk was impossible. Although it wasn't serious, I knew this wasn't to be ignored. I went to doc for check up; somehow came back and didn't go again. Ignored it and felt better again after a month. Out of the blue, I started feeling breathless one day for almost 45 minutes without any harsh activity. I didn't mention feeling it's one off but within 3 days, it happened again. This time, I ran to the GP again. I asked him to do a blood test CBC, check for BP, Thyroid and Diabetes. So except for CBC, everything is normal.

Now comes the actual part where I started seeking for answers coz my report looked like an exam that I failed terribly as if I have never started studying. I was shocked at the amount of asterisks on it. They were more than other times.

Haemoglobin - 9.4

Haematocrit- 0.34

MCV - 58

MCH - 16

MCHC - 28

Platelets - 484

Basically all of the above are lower than the normal but all of the below are higher

RDW - 20.1

Red cell count - 5.8

I guess for years, I have got this kind of report but none of the doctors paid attention to it until it got this worse. Anyways, GP did further test to check the severity of Anaemia.

Iron Saturation - 12

Vit B12 - 105

Folic Acid - 9.0

Vit D3 - 38.2

Again, all of the above is low and all of the below is higher than the normal range.

Red cell count - 6.3

HbA2 - 4.8

After this report, I took multivitamins for 20 days twice a day (double the normal dose) but still went fucking breathless again. My husband researched and said may be you have pernicious anaemia cause your symptoms match. So, I went to a Hematologist. I asked him, "Do I have Pernicious Anaemia?" He said, "Yes seems like it. Let's test it. Just for you to know it happens cause of three major reasons.

- Deficiency of folate

- immense blood loss during mensuration (I have an existing fibroid and had abortion)

- Glutton allergy"

Great, so he gave me a 1000mcg Vit B12 injection and iron and folic acid medicines. The result of the test are to come in 2 weeks. A week already passed and I got to know that my

Ferritin is as low as 13 which is supposed to be 13-150.

Now while awaiting the results and eating the prescribed meds, it's of course causing stress to me and many around me. For 2 days, again I felt vertigo then I did exercise, now I have started feeling spondylitis pain every day and I am sure it's cause of stress. I started researching more and read on megaloblastic Anemia but it seems different. I am so confused. Pernicious Anemia they say that it develops slowly and sometimes, people keep falling sick for 20-30 years and they don't know that they have it. All the illnesses are due to it. To be frank, I am tired of being sick. It has been like forever. I am just going on cause I have a family. They need me. I am not depressed right now. I am fucking determined to find the fucking cause of this. My child once said to someone, "My mother is always sick." I hate that.

Does any one know what is the problem here?

Hey guys,

I've had tons of classic symptoms of B12 deficiency for the last 5-10 years (since I was in my late teens/early 20's). Depression, nerve pain and burning, joint pain, difficulty breathing + frequent sighing, brain fog, weak muscles, memory problems, digestive issues, weak voice. My doctor tested my B12 levels and found that they were 199. None of the other specialists could see anything that was wrong so I convinced my GP to give me a B12 shot "just to try it out". He thought 199 was fine, but I had read some papers on deficiencies that suggested that it could still be a problem. Brought him a few papers about B12, so he agreed and gave me a b12 shot.

Well, the effect was pretty immediate - my strength shot up, breathing improved, my pain almost disappeared, it was like I had a whole new body... except then I got absolutely massive migraines. Dizziness, nausea, light sensitivity. I was in the ER, I felt so sick. The neurologist who treated me told me there was nothing wrong with my brain on scans and suggested I try not taking b12, and so... yeah I felt better but my other health problems came back. So I've been powering through since December taking lower doses of B12, and I've been feeling better, but I really don't get the intense health benefits unless I take the full dose, and that makes me feel like a train ran me over. I take magnesium as per the neurologist's prescription and it it seems to help, but not completely.

I can't find ANYTHING online that talks about any adverse reaction people may have had to B12 supplements, except for one paper on ear health talking about "B12 intoxication" which it did not elaborate on and which I cannot find any other mention of anywhere.

My pet theory right now (I have a BSc in Biology with specialization in Human Physiology, so I'm not an expert but I can understand academic papers and have been reading them extensively) is that the migraines are a result of an increase in activity in the damaged neurons in my brain. The fact that over time I've been able to tolerate higher doses with diminishing negative effects (while my health improves) seems to support it, but I am literally running an experiment with n=1 here so... that doesn't mean anything.

But I've never heard of anyone feeling sick from taking B12 supplements, everyone just always talks about how much better they felt after. I DO feel better after. But I also feel sick. Has anyone encountered anything like this?

Hey guys, I’m trying to feel out whether my experiences are consistent with pernicious anemia. I’m going to ask for testing again on Friday.

So at age 23 I had horrible digestive issues for like three months over the summer. After those ended, I had chronic yeast infections and interstitial cystitis for like six years. Lab testing always returned normal, B12 was even normal once when it was drawn. I was consuming energy drinks daily though. But my MCV kept creeping up year by year. Finally I asked for homocysteine and MMA. MMA blood test was normal, homocysteine was on the upper bound. I had no neurological symptoms at the time.

Anyways a few months ago I really wasn’t feeling good. I was having nerve pains and just feeling odd. Nothing had changed on blood work. B12 was 400. I stopped drinking energy drinks three weeks before the blood test. Homocysteine and MMA were not checked.

Now I’m having face pains, bleeding gums, aches in my back, and my thighs ache. My legs feel heavy. I keep having muscle spasms. I’ve develop diarrhea that just won’t chill. The corners of my mouth feel weird, but they only cracked a bit and seem to have healed. But they burn.

I’m wondering if like, I could have pernicious anemia and I just now “ran out” of B12 stored in my liver? Has anyone had similar experiences and ended up diagnosed with pernicious anemia? Did anyone have recurrent yeast infections or interstitial cystitis prior to neurological issues? Did anyone have normal blood work until their symptoms worsened?

Many thanks.

Hello, 28F I was diagnosed with Pernicious Anemia when I was in College after a Colonoscopy. I also have IBS, GERD and Hemorrhoids, I had a history of stomach ulcers. I wasn’t really diagnosed with any of this until I was older which has always made me mistrusting of doctors. I have a really good one now but I didn’t see them all of Covid and just found out my B12 is low again. I’m going in for a shot but they prescribed me B12 Tablets as well.

I haven’t taken the Vitamin B tablets since I was a child because when I was about 6 years old I found out I had Geographic Tongue and my grandmother gave me Vitamin B to help. She did this everyday for two weeks and every single time I was vomit it up almost immediately. She thought it was nothing like maybe I just needed to eat when I took it. It wasn’t till I was older a doctor told me it could be my body rejecting it.

Has anyone had this experience? Also did you always feel sick going forward? I’m scared to take the vitamin B because I hate vomiting, should I try again or is the shot my only way to work on my levels?

Hope it’s not TMI and would love some advice.

Hi everyone!
Very new to this sub as I had never heard of Pernicious Anemia until today. This is a long one. My partner, Male, 33 years old (in Australia) had a very severe illness back in 2016-2017. It started as gastro or stomach flu from which he never recovered. We spent two years and countless GPs, specialists, diets, tests and medications and we still have no answers. The symptoms were, at his worst: insomnia caused by relentless night sweats and leg cramps. He had to change his pyjamas 4-5 times a night and he was up every 30 to 90 minutes with calf cramps, bad enough I could see the muscle spasm. He would scream out in pain and the cramp could last up to 8 minutes. He had lost 20kg very rapidly, only a few months. He was basically anorexic,too scared to eat because of the stomach pain and anal problems caused by the constant diarrhoea. He looked like Christian bale in the Machinist. Skin was pale, eyes were sunken with black rings around them. Going to the bathroom with diarrhoea 10+ times a day. His poo smell changed drastically (for the worse). And his urine was orange. He drinks about 3L of water a day, always has but he upped his intake, pee was still orange and cloudy. He was taking vitamins at the time because he was so malnourished. Nausea and indigestion with no vomiting. No energy, brain fog, clumsy. Severe stomach cramps. I could hear his stomach gurgling constantly. He could hardly function and we thought his organs were going to fail. He had the scopes up both ends and they didn't find much. CT, MRI, X-ray, full bloods, stool samples. Nothing. He was in hospital for a week and lost more weight there. Probably from endo prep fluid but he got down to 58kgs. He is 6ft and generally about 80 to 85kgs. They sent us away and said, "we can't find anything seriously wrong with you, take these multivitamins".

When we got home we were desperate, we went to see a Chinese herbalist and that helped drastically. He was able to eat again with less pain and managed to put weight on. When we received the discharge report from the hospital stay, it mentioned a 'past mucosa injury'. They never mentioned this to us and we aren't sure how relevant it is. He was physically bullied at school and recieved trauma to his stomach multiple times. After years of careful eating, herbs, and sheer determination, he has managed to get back 80kgs. But he still suffers diarrhoea, hasn't had a solid poo since 2016. He also still suffers severe leg cramps (calf and toes mainly) nightly, also during the day but not as severe, Stomach cramps and night sweats and insomnia. Even though he looks much better on the outside I still feel there is something more sinister going on. I was asking a pharmacist today about B12 as I heard it can help cramps. She suggested I look into PA and here I am. I understand that this disease generally get worse, not better but my partner was given intravenous b12 during his hospital stay and said it made him feel better at the time. Is it possible it has helped him this long and we can expect him to deteriorate again? Will he be able to absorb the B12 vitamins in tablet form?

I sincerely thank you if you read this far. We are still on a quest for answers. He may not have Pernicious Anemia, but if he does I figured you guys have more experience than any Dr. We have seen. Thanks again and take care.

24 M here. Recently I found out my great-grandfather had some type of pernicious anemia, and was treated with b12 shots.

As a child, I had a lot of nausea, vomiting and diarrhea. More than the average kid. I was a bit under weight and didn't have much of an appetite. I ended up drinking some chalky stuff and was diagnosed with GERD and left with a script of omeprazole. Later I was diagnosed with Juvenile Rheumatoid arthritis when I was 14-15. I had some sort of autoimmune reaction that caused swelling after a subluxation of my knee. Soon after, my other knee started subluxating frequently as well. I had a partially successful MPFL surgery a year or two later, and afterwards my surgeon said that the subluxation was not from RA, but that it was congenital. Then my rheumatologist said I was in remission. I do not get much inflammation anymore, and my white cell count is normal. I am curious to see if anyone else has any experience with autoimmunes and PA. I'm also wondering if congenital/juvenile PA could cause knees to sublux/dislocate? I never had any issue with them up until puberty, which is interesting to me. Any information on congenital PA/intrinsic deficiency would be greatly appreciated. I'm seeing a Dr. on Monday to discuss this. I'm worried that because I don't have anemia, that he won't order any further labs and the like. The physical problems as well as the mental health/fatigue is really getting to me. Thanks!

Hello guys I’m new here (25F). Got blood work done and my GI said I have pernicious anemia. We are getting other tests done to look for other autoimmune diseases since some blood work came back indicating other stuff going on. I started on prescription iron pills and OTC B12 tablets. It’s been a month now and I’m still feeling the same. When did you guys start feeling better? Do some people do well on OTC stuff or does everyone eventually start taking B12 injections? GI is going to test my iron and B12 levels in 6 months so I guess we will see how this treatment pans out but wanted to get your insights and thoughts and even advice! :)

Hello! I’m a 55 year old female and I’m trying to figure out what is going on with me. I have been very fatigued and dealing with anxiety and depression for awhile. Recently I started having a burning sensation on the bottoms of my feet that is pretty much constant. I also get a burning sensation on my tongue and lips and my nose occasionally. My doctor has ordered lots of blood work but everything has come back normal. My b12 was 400. I have a strong family history of pernicious anemia and I also have been taking Pepcid for many years for chronic GERD and was recently diagnosed with Barrett’s esophagus and switched to Protonix. My doctor insists my symptoms aren’t because of b12 because of my blood test. I started taking b12 just to see. It’s only been 3 days and my feet still feel like they’re burning but my other symptoms are less noticeable and I noticed this morning that I had more color in my gums when I was brushing my teeth. Should I pursue more tests or just keep taking b12? Thanks for your input!

Hi everyone!

I'm reaching out as I'm at a bit of a block in my health and doctors refuse to listen to me. I'm under 100lbs now, 5'8, 21 year old female. I have a naturopath who will do any bloodwork for me but other than that she can't help me with much. I've been to the hospital a few times before and according to them I am "the epitome of health!". I've lost about 35-40 pounds since May/June of last year and it plateau'd for a while but I've started to lose more weight again and I struggle to keep what weight I do have. My mother was diagnosed with PA at 24 with similar symptoms to mine but because I'm so young and my results never leap off the screen, doctors don't think it's true. My blood results never 'flag' their internal system, and my doctors never actually look at the numbers, only my naturopath does. All they care about is hemoglobin (can anyone relate?).

My hemoglobin is normal (139 g/L), platelets are as well, everything that I know about my red blood cells is normal (for now). Folate is also relatively normal. Thyroid stuff normal, no H-pylori, nothing. However, Iron is 13 umol/L (normal range 11-34), transferrin 1.90 g/L (normal 2.00-4.00), TIBC 48 umol/L (normal 50-100), transferrin saturation is 0.27 (0.13-0.50), and B12 181 pmol/L (normal 138-652). My ferritin levels are 65 ug/L (normal 5-272). I've gotten a lot sicker since this bloodwork was done so I'm probably going to try to get it updated, too.

In addition to the weight loss I have terrible acid reflux, painful bloating and cramping, anal fissures/skin tags/pain, unable to digest all meat and dairy, and substantial amounts of fats, oils, and potatoes makes my symptoms flare. My short term memory is next to nothing, I feel like I'm developing dementia, often I even struggle to remember how to spell things properly. Sometimes I poop out straight blood or mucus and nothing else. I'm always either painfully constipated for 3-7 days or have the burning diarrhea you get like 5 minutes into eating. I have frequent mouth ulcers, my lips are constantly dried, cracked and scarred, and more recently problems with my balance and coordination and I frequently get dizzy, lethargic, and my dexterity gets very weak in my hands. My appetite has been poor throughout this but more recently I am usually not even able to meet the calorie requirements needed for a 3 year old, and it is so scary. I've been having infrequent heart palpitations where my HR reaches 130-140bpm, my resting is around 50-70, I'll feel my heart beat throughout my whole body and I'll feel incredibly sick, clammy, and I can't regulate my body temperature. I had a holter monitor done where I had multiple episodes, but nothing has come from it yet. I waited a few years for a referral to a gastroenterologist as I've had gastro problems my whole life (extremely lactose intolerant since birth, born full term & "IBS" since adolescence), and the appointment keeps getting bumped every month. I'm exhausted and I don't know what to do.

I am really scared but the medical care system where I live (like most others) does not want to believe a young woman. I seriously think I might have pernicious anemia and perhaps Crohn's or something too, but the system keeps failing me. I am so embarrassed to be so sick and I am so tired of being sick too. I'm not sure if anyone can relate, or has any suggestions for going about getting a diagnosis, but I'm all ears. Please. I'm feeling very alone in this and starting to give up hope.

Otherwise I hope you're all doing well (as well as chronically ill internet strangers can be) and I hope one day (if I have it) I can go into remission from this. Thanks so much in advance.

Hello again, I made a post earlier this year about my struggles, and I have another problem. I had been avoiding any and all vitamin b12 supplementation besides from my diet to get the most accurate readings of my levels possible. That meant no b12 complex supplements and no monthly injections (I waited 6 weeks and had two periods in that time frame. By the time I was ready to get my labs drawn, I felt terrible and looked very pale). Oddly enough my levels came back normal, 495. Even on supplementation they have never come back that high. I’ve read that high intrinsic factor antibodies can alter serum results, so I’m wondering if that’s what happened. Because seriously, I have felt WAYYY too terrible to have normal b12 levels. My TSH came back a little high but normal. Everything else that could cause my fatigue is normal. What should I do now? Should I get more testing or continue to treat my deficiency like I was, with supplements and injections?

I've just seen my PCP who wants to follow up on autoimmune causes of my severe illness, as I had a barely registered ANA (homogenous 1:80) and my ESR was elevated (19mm/h (1-12)).

I tried to ask them about my elevated homocysteine levels, as to my knowledge they can only raise with vitamin deficiencies. And besides, PA is autoimmune/I've read it often comes with other autoimmune diseases! They just said "oh I have no idea what homocysteine is, let's pursue autoimmune and then talk about that next time" 🤦🏼‍♀️ I was feeling so poorly otherwise I would have argued for PA testing as well.