Hi, I am new here. Been reading this forum, and I have some issues related to b12 deficiency, but I am somewhat puzzled, whether in my case just b12 could be the issue, or could there be something more behind my symptoms. I am 35 and have been ill for almost 20 years now. My symptoms have basically been the same throughout this time, not much has changed except some improvement after changing habits. Unfortunately this might be long posting and I will be truly grateful if someone has time to read it. If you feel it is too much skip to the "end" where I have listed my current symptoms and how I react to b12. So I am 35 year old female, from Finland. Over here doctors dont seem to know much about these things, so that is why I am now looking for help from here. In my past I have had few injuries and infections so I have been taking a lot of antibiotics. At age 12 I injured my knee and after first surgery it got inflamed which lasted pretty much 4 years. My knee got swollen and it was full of fluids, which was treated by "sucking" the fluids out and injecting cortizone, cannot remember how many times. During that time I also suffered from periods of high fever. It came from nowhere, feeling fine night before and next morning waking up having 40C and it lasted 3-5 days with severe tonsillitis, was barely able to drink. They treated it with antibiotics of course, how else. Not even looking for a reason why my knee was swollen. So that could happen 4-6 times/ year. Around sometime during these years I started to get sick after drinking milk, which I had been drinking like water since I was a kid. At age 17 I popped a blister on my heel (never ever do that), it got inflamed. I got high fever 12 hours after popping that blister and also developed burning sensation on my hands, mouth and bottom of my feet. I was too ashamed to tell my aunt about the blister I popped so I suffered in bed 3 days having high fever, never feeling that ill. On 4th day we went to ER and they did not do much. Draw some blood and sent away. Nice. They never told me I had high CRP (over 200) but ordered some basic antibiotics. At that point I was already feeling somewhat normal. I came back home and my parents took me to the local hospital, they wanted to take me in since I still had sort of high CRP, I refused and they gave me more antibiotics + antibiotic patches to my heel. Cannot remember for how long I took antibiotics but eventually it helped and CRP was normal and my heel healed. Miraculously at the same time my knee healed. After that it never got inflamed, no periods of high fever nor tonsillitis. To me the doctor at my local hospital told I had blood poisoning, but later on I figured out maybe I had only mild inflammation and hand, foot and mouth disease caused by enterovirus, since it can cause high CRP, or at least thats what I have read about it?!!??! After that my sensitivity to dairy products got worse, I got super addicted to coffee and sugar. I could drink tons of coffee and eat loads of junk food. I did not sleep much, not because I could not, just because I did not want to. I went to partying a lot. I also got birth control pills for painful and heavy periods. I went to second knee surgery under regional anesthesia, which went fine except after the surgery I was shaking and shivering for hours. Nurse telling me if it does not go away they have to give me some meds which will make me feel awful and ill. Eventually it passed after one nurse giving me one candy. Weird. Two weeks after the surgery I was suffering from headache, could not sit or stand up, only laying down. Doctor told me I need dialysis if it does not pass soon. Fortunately it passed. At age 19 or so I started to get constantly nauseous and having back pain in between my shoulder blades. At first it eased when I quit drinking coffee, but after few good days I started to drink coffee again since I was so addicted, I needed that boost. I felt like without coffee and sugar I am just boring and slow. I did not realize I was self-medicating. I went to doctor from doctor to find help for that constant nauseousness. Sometimes it was just mild 24/7 and sometimes it hit me harder. I never threw up, I just felt super nauseous. My mom told me to take vinegar to throw up, instead it actually eased the nauseuosness, if only I had known it meant I could have low stomach acid. I had more antibiotics because of rooth canal treatment, first time I had constant diarrhea during medication. It stopped after last dosage. I got tolerant to beer, was not able to drink it anymore. Doctors gave me zantac and other antiacids. I felt nauseous after taking zantac, but kept taking it and other antiacids. Sometimes, regardless intolerance to milk ,only sour milk which contains probiotics helped. Could go days only drinking sour milk. At that time I was still normal weight. I tried all sorts of elimination diets, but it was hard not getting help from anyone. I even seeked help from homeopathy, which did help a bit. I know many people say it is placebo, but so what, at least I felt someone took me seriously. But I felt it did help my digestion, I was still bloated, but less nauseous. Maybe I was just less worried since someone was taking me seriously. If so it only underlines the fact that , half of treatment is to feel that doctor/someone is taking you seriously. I barely ate much, was studying and going to work at the same time. During that time I was feeling really anxious and tensed, nothing made me feel good. I was constantly seeking something to feel good, food, coffee, alchohol, relationships etc. I was restless and felt miserable. But since my digestion felt slightly better, I felt physically slightly better and figured it will pass during the time. So I had 2 ok years. Just ok, since I did not feel normal, but was able to handle it. Then we went to holiday with my ex-fiancee and there it hit me hard again. From the first day I ate normally foods I had not been eating at home. Coffee with milk, white bread, beer and so on. We went to rent a car and while waiting I started to feel horribly nauseous, I run back to hotel and bursted into tears. My ex was furious, since he thought I was pretending. I ruined his holiday. For 2 weeks I felt miserable, I was so bloated and nauseous. If I did not eat, I felt I am gonna throw up and pass out, when I ate I felt so bloated even walking and breathing was hard. Doctor over there told me to eat rice and white bread and gave me more zantac. It was also super hard for me to tolerate heat, had not been hard before. I lost 10 kilos. Came back home and went to doc, he refused to believe nothing is wrong since on paper I was super healthy, he gave me SSRI meds and benzodiazepines and said that it is either that medication or mental institution. I felt horrible and confused, took the medication. SSRI did not work with me at all, could not take full pill and doctor got mad with me. Benzodiazepines made me sleep for 2 weeks. I went to psychiatrist who told me to quit SSRI and benzodiazepines and find out the physical illness first. He said that I am anxious because I am ill. Went back to doctor who had told me to take the med in the first place and he said he wont treat me anymore since I quit the meds. Next time I had new doc, which btw was psychiatrist and she said the same, first find out the physical illness. She read my papers and wanted to draw more blood. Everything else perfect as usual, except she had ordered Yersinia tests. Antibodies were elevated. Did not help much since nobody knows when I had that. But she linked it to my inflamed knee and that is why big dosage of antibiotics to my so called blood poisoning cured my knee. But she was only there for a short moment and never got to help me more. Back to that original douchebag who refused to treat me. This time he told me to take Nexium, the strong one, 2/day. It did help at first, but only the first pill, my gut was so irritated. I was on nexium for 4 months, on and off. Like 2 weeks on and then 1 or 1 weeks off, because my digestion got worse and worse. I felt awful, could not tolerate physical stress anymore. I was bloated and in pain. Then I went to gastroscopy, could not do it normally, because I was so scared and was sedated, so I was sleeping during it. It went fine, they found nothing. I had only taken nexium/zantac once or twice a week for few weeks before gastroscopy. The doc told me to more bread to cure my stomach, since my gut was healthy as possible. He said bread will cure my poor digestion. I was also given Metopram for nauseousness. That combi did not work. I was eating dark bread, which hurt my stomach and metopram which made me sleep 17 hours/day. I gave up. I just gave up. I was 23 and gave up. Later on another doc told me not to take metopram since it causes anxiousness. I was super anxious and had tons of phobias. It was hard to get to shower. I had also started to get "panic attacks", getting scared of eating since everything made me nauseous, but not eating made me feel as miserable. I could not go anywhere. For a year I did not leave our home. I was not only nauseous, but weak. I had developed more food sensitivites, I got bad hives from i.e banana, being so itchy every night , and my sking was burning read. I had greend and yellow foamy diarrhea. I was barely able to stand up. Eating rice made me dizzy and it was super had to swallow it, I felt I am choking and got diarrhea. Depending what I ate I had to go to lay down for 2 or more hours. Then I got enough of it. I cut off everything except oatmea, potatoes, meat and carrots. I ate those 2 weeks and started to feel a bit better, no more hives and no more diarrhea. But physically I felt horrible, dizzy and so on. At some point I broke up with my ex, he could not stand it anymore. He treated me as I was lunatic. I moved back to my parents since I was not able to do anything, was too weak. For sometime I felt somewhat better and then I went back to old habits, coffee, milk, cheese, bread , rice and after few weeks I crashed again. It happened everytime. I figured maybe I am mentally ill and gave up. I did not go to doc anymore. I was just waiting I would die. I got intolerant to coffee. I was not able to put up any weight, I tried everything. I never skipped a meal, but was barely able to eat, it was hard to swallow and felt nauseous. I did not have diarrhea anymore if only I avoided rice, wheat and milk. But was constipated or just feeling everything is not coming out. Severly bloated, which made me even more nauseous. If I ate gluten free food which contains rice and milk I woke in the middle of the night having painful diarrhea, shaking and sweating. I am 166 cm and during those years my weight was around 50. Then it went down to 47 and I got scared. I did have some of my strenght back so I was able to exercise a bit, but too much threw me over the edge. I was exhausted. My legs got weaker and weaker, was hard to stand. I read about digestive enzymes and ordered some. It helped. I was finally able, after 10 years fighting, to put up some weight. From 47 kilos to 60 kilos in 6 months and then down to 57 during next 6 months. I changed my diet and rested. I cut off milk, sugar and chocolate and so on. Still nauseous, feeling full after meal, really bloated and so on, but not that bad anymore. Then I started to be a bit more active, but my legs were still weak, I started falling and injuring myself. I could just trip and fall, without any reason. The worst part is after an injure I feel I am passing out. Had few normal flu and after those I felt super weak and like passing out. Even a cold without fever made me feel like passing out few times. And now I am here. My body temp has been 35.5- 36.1 for years except after ovulating 36.4 or so. I have never had any issues with my periods, they have been regular and heavy even after quitting birth control pills. I ovulate approximately 4 days after periods ends, my right side of stomach hurts and temp rises. I also start sweating and feeling sometimes super nauseous which lasts until next periods. SYMPTOMS NOW : No appotite at all for 15 years, not feeling hungry then and not feeling hungry now, only dizzy and nauseous when time to eat. I only eat because I have to. I always feel cold, going out no matter how much clothes I have on, I feel freezing. Even during summer when it can be +26 C, I go to roller skate a bit and then to sauna, my thighs are ice cold and I feel cold. During the warm summer I suffer, I feel dizzy and nauseous and have to hide indoors, later on it gets a bit easier, and I can go biking or roller skating a bit in the evening, not much tho. My eyes have been super sensitive and achy. I am jumpy. My heart can race wild for no reason. That does not worry me since it does not feel bad, I just feel it. During the winter I do go cross country ski a bit and I can go to max heart rate without feeling bad. But basically my heart rate during skiing is too high all the time. Resting heart rate is approx 65. Blood pressure has been low for years 100/60 or lower. I get bruises easily and they last long. Even just gently massaging my legs or scratching myself can cause bruises. My finger nails are ridged and I am missing the white moons. I have never seen this badly ridged nails with anyone except old women!!! My muslces are often tight and sore. Nothing helps. My neck is tight. Brainfog or brainfrog as I accidentally once said to my close friend. Since we have called it brainfrog I have some cognitive issues, which has made me suspect CFS/ME, but less than on the list of symptoms. I have issues when tired or too much people around. I can consentrate when necessary. I read a lot and I read a lot in english which obviously is not my first language. I have generally good memory. I can do things that require consentrating, but sometimes I might do mistakes i.e I might bake something in cold oven.... but that is mostly when I am super tired. I feel sleepy often, but dont like napping since it makes me super nauseous. I have never had real issues with sleeping. Only when I was drinking a lot of coffee and eating cheese or chocolate before bedtime, then I could stay up all night without feeling sleepy at all. But generally, I can fall asleep quick and sleep good. Sometimes wake up to go to pee, that mostly after ovulating. I sleep 7-9 hours. I wake up somewhat perky, but start to feel sleep about hour after. I need either to sit or lay down often. Clibming up stairs makes my heart beat heavy and makes me short of breath and my legs feel so heavy. I can go skiing, walking or biking feeling only normally short of breath, but legs feel heavy all the time. I "crash" next day after physical stress. Depending how hard was it. Sometimes I feel super nauseous and tired 2-3 days, aching and stiff muscles. But. I dont have other type of pain, no joint pain, hardly bad headache, only stiff neck causes headache which passes after streching out or laying down for an hour. I have not taken a single pain killer for 10 years. My periods are not painful anymore, only heavy. Less sensitive to loud noises than before. Senstive to some smells, some perfumes, some deodorants, some hairsprays and so on, but not to all. But can handle for example paint. Smell of celery is the worst, it makes me physically not only ill, but my nose gets super achy, like someone had punched me. My hair has always been thick and it grows fast, i have long and healthy hair, never issues with losing hair. My skin is super dry and itchy, have hives often and like tiny blisters full of clear fluid. Slow healing of wounds. Feeling sleepy during exercising. I start yawning and eyes get heavy Big big big black circles under eyes. Pale skin, in pictures I look grey. Never healthy color. Hard to tolerate sauna, feels as climbing up stairs, short of breath and heart beats heavily. Back to question could it be only b12 : I have took saliva test for cortisol levels 3 times now. Spring 2013, 2014 and fall 2014. Spring 2013 and 2014 from same lab, showing low cortisol, especially in the morning. Oh well that is how I have felt! Fall 2014 was from different lab with full thyroid panel. In that I had better level of cortisol. Thyroid pretty normal except low t3 and thyroglobulin high. I also had super low iodine (from urine) and somewhat low selenium. rt3 was in normal range, but due to low t3 I had bad ratio, the worst. Dietician recommended to take iodine, selenium, vitamins and glutamine. Vitamin A actually cured my eyes, less sensitive if all, able to tolerate bright light. Glutamine helped my stomach a bit. Was taking iron, selenium (from brazilian nuts) complex B, glutamine, fish oil with vits A and D. Magnesium as oil you spray and spread on your skin. I had a flu on January, normal fever for 3 days, coughing and runny nose for 10 days. I felt ok day after fever went day, but then my body temp dropped to 35 and I felt super bad and weak. I lost my appotite all together if there was any and had to force myself to eat even tho felt super ill. Could not taste of smell anything. I had weighed 57 for years, no changes, but lost 2,5 kilos during the flu. I finally went to doctor, so nervous. I am constantly scared of throwing up and getting hidious panic attacks etc. Nothing bad happened But now that nervousness sticks with me since I have been so alone and not knowing what this is. Hard to learn out of it. Hard to learn it is not because I am nervous, as doctors in the beginning tried to tell me, that I am just anxious and that it is, no can do. Doctor was lovely woman running all possible tests, thinking it could be beither b12 or folate deficiency based on my symptoms and history. But I had been on complex B pills for 6 months before tests. Even tho complex B made me ill I took it. 1/4 pill made my heart pound fast. Eventually I took 1 pill, but got bad panic attacks next day. I took the pill before beditme so I am not sure why I reacted that way next day, was it sign of needing more or? Those pills had 3mcg cyanocobalamin. My b12 level was 342 in range 170-660 and folate good, but I started to study b12 more and felt I have finally found something that could be the reason. Had to continue with another doctor, who basically told me I am stupid. He said it is normal to have low body temp and all of us feel a bit tired sometimes. He shrugged shoulders to my question of why my legs are so weak and what to do. I got upset, pissed off, mad and sad. I started to take b12 (methylocobalamin) 1200 mcg oral spray full dosage. After 2 days I woke up feeling my gut is not irritated. I even felt slightly hungry. After 4 days of full dosage I started to feel a bit nauseous and switched to multivit spray that contains all B, C, D, E, K, A, selenium and iodine, continued to feel somewhat good. Less bloating, less irritation. Still feeling a bit full after meal, but does not last so long, less burping, and if burping it is easier. 4 days on multivit spray, back to doc, who said it is not b12, but i am too stupid to believe it. And if I so strongly believe it is b12 then I have to be off of it for 3 months and get re-tested. I said no and he said no can do then. In my mind I had mixed up these 2 sprays, thinking the pure b12 spray was lower dosage, so I was a bit upset thinking how that little can help me, maybe it is not b12. After the doc appointment my friend pointed out I had been taking stronger one in the first place. I was happy. It was not placebo then! Also my back was feeling less stiff, finally after 15 years. Went to another doc who said, my b12 is not good, it should be above the upper range and that some people just dont feel good on low levels. He told me to continue for 6 months and then get re-tested. He said it is so common to be deficient, but most doctors dont even think about testing it. I went another high dosage on b12 for 6 days. On day 5 I started to feel tingling on my hands, feet and butt. I lasted approx 24 hours. On day 6 I woke slightly nauseous and feeling like really empty, like no food makes difference, not feeling hungry, just empty, but no senstation of irritation. Next day I woke up nauseous and feeling weak, had to go to grocery store and felt like passing out. My body temp was 35.5, took it many times, after breakfast it shot up to 36.6, felt good. Skipped b12 and back to multivit spray. I went to ski for 2 kilometers, felt ok, body temp 36.8 all night, muscles felt nice and relaxed. Went to work next day, was ok, not good, but was able to tolerate it, no feeling like "crashing" even tho had skiied day before. Body temp 36.8. Still on full dosage multivit spray. Yesterday was exercising a bit, felt ok. Slight feeling of tiredness and spasming muscles, but it passed fast. Did not feel like laying down all day. Full dosage multivit. Body temp 36.8. Today b12 in the morning, trying like 2 days on 2 days off or something. Body temp lower this morning, feeling not that perfect, but no aching muscles or anything. I am wondering could it be just b12 combined with iodine, selenium and vitamin D fixing my t3 issues? I know it is to soon to say anything, will this fix me. But I doubt it could be CFS/ME? I know feel less brainfroggy , my head is sort of clear. Yesterday and day before 2 of my friends told me how much different I sound. They know that usually after exercising or working I am dead tired and dont even feel like talking. They were amazed to hear how perky I sounded. Could it be just functional deficiency caused by stress, injures, antibiotics and antiacids? Could it be something like leaky gut, low stomach acids, dysbiosis ---> b12 (and other) deficiencies --> euthyroid illness: my body shutting down because of other conditions. I also could have issues with histamins, since strawberry, chocolate, kiwifruit and so on cause issues. I did not even know coffee is culprit as well, I do drink some even tho it makes me feel awful (dizzy, ill, weak so on). I know this is a long road and I seem to react to relatively small dosage I can tolerate up 4 to 6 days. I have no clue how I should continue. But I do know I need b12 since there are so many small things changing and improving now, but obviously low histamine diet with probiotics could also be beneficial? I am also very conserned because of my teeth have gone bad, I am so scared of going to dentist since I do react to numbing shot, but the other way around, I react to these modern which contain less epinephire. Last time my dentist could do much because as after knee surgery I was just shaking and shivering. Next time she used old fashion with high epinephire and it went good. I dont get why. But in my case there is so much to do, and in this condition I dont think I can handle it, but general anesthesia could be bad, if in the end I had CFS/ME And how do I figure this all out and find a doc knowing about these issues. I worry so much my teeth going too bad... I know that fits with CFS/ME... I have come so far, I am so determined, but I sometimes do think is it too much, is it too hard for me to conquer better health and quality of life . Too much water under the bridge and so on. This was long and messy posting, I am sorry. So much to say.