I wanted to know what everyone studied and does for a living here. I am feeling down because I have not done well with college and keeping a job because of my anemia. I just want to know if anyone else went thru that, still is dealing with that, and/or is able to live a normal life.
I was only diagnosed last year with pernicious anemia after a young resident doctor finally asked for a lab test for my b12 levels, which were super low, and for intrinsic factor antibodies, which was positive.
I was nearly 23, and after almost a decade of feeling anxiety attacks, weird sensations, nerve and joint pain, fatigue, irritability, mood swings, and problems concentrating, I finally knew what was wrong with me. Around late 13/14, I had all the symptoms of long-term b12 deficiency, but my b12 levels "were only a little bit on the low side of normal" and the pediatrician referred me to the psychiatrist. :/ I had trouble academically and socially in middle school and high school, became terrible at karate because I lost my coordination and balance, and would lie down more than half the day because of how tired I felt all the time. I basically missed out on my entire adolescence. I also failed college and made the mistakes of living in the dorms, even getting up to shower or walk to the cafeteria felt like I was fighting gravity. I dropped out and struggled to wake up on time, find a job, and maintain the energy to keep even a part-time job. I went thru Sertraline, Wellbutrin, Hydroxyzine, and Effexor. I'm taking 150 mg Effexor now, which doctors say may help with my chronic pain but I am not so sure.
I started taking cyanocobalamin 1,000 mcg/ml injection once a week for six weeks. But I did not feel any difference with my symptoms. So the doctor only prescribed me the same dosage every TWO MONTHS. It has been a year since I tried following just the doctors orders, but I feel the same. I will just buy some from Mexico (I live in the US) without prescription and will inject them every two weeks.
I started a part-time as an enrollment assistant at a junior college, a job I have kept for a record nine months. I went back to college and I still can't study but at least I am not failing my classes. I do not know whether I should go back full-time to study. I just want to get a job and work full time, but I know getting an asociates degree or bachelors degree would be great and I really want to study even if am not able to work in the field full-time for whatever I study. But I can't concentrate and still have times when I feel so tired and heavy.
Anyone have any advice or words of encouragement?
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GreenTamales
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First of all , I’m really sorry to hear what you have had to endure . You are showing such resilience —amazing .
I am in the U.K.and with those neurological symptoms you have , you should be injecting B12 Every Other Day , until you are experiencing no further improve ment . Also you need to take a daily modest tablet of folic acid ( vitamin B9) — say 400mcg . This work’s synergistically with B12 .
As a Pernicious Anaemia patient you have low or no stomach acid ( the Intrinsic Factor Antibodies that you produce destroy the parietal cells in the stomach . These. cells also produce stomach acid. ) Low stomach acid = Hypochlorhydria No stomach Acid = Achlorhydria.
Makes it difficult to break down food and absorb vitamins and minerals . Therefore have smaller meals more often and always chew your food very thoroughly in order for the enzymes in your saliva to start the work of breaking down the food you eat . Some people find help with a drink of diluted organic cider vinegar before a meal . or another acidic drink . Pay attention to a good balanced diet . Fermented foods like real yogurt , kefir , kimchi and sauerkraut are excellent for the stomach flora which suffer from low stomach acid .
Once you have achieved as good a result as possible ,from EOD injections, find out by trial and error how often you need to inject to maintain the status quo. You may have been left with a few irreversible symptoms after such a long time without treatment for P.A,
But you have come to the right place to get help ! Keep us informed , and remain positive .
It’s not easy , because the medical profession has very poor understanding of P.A. We have to look after ourselves! Welcome to our forum !
Thank you very much for the kind words and the great advice. It means a lot to me that others in this community are really understanding and help each other with something not many other people or understand or sometimes belittle.
I did suspect I needed more B12 injections, and I will follow the frequency you suggest and monitor my symptoms. Hopefully there will be some improvements. I was not aware that stomach acid was another thing to consider. I fasted a lot in high school and college because I got stomachaches because of stress only to eat one big meal in between each period. At one point I was prescribed omeprazole. Later, I had my gall bladder removed because of an infection. I definitely need to eat smaller meals and watch what I eat carefully.
Omeprazole was the last the last thing you needed ! You see what I mean about the ignorance of the medical profession ?—-PPIs can actually cause B12 deficiency , by annihilating stomach acid which is needed in the absorption of all vitamins and mineral , but especially Vitamin b12 , which is the most difficult to absorb ; and some other pharmaceutical drugs eg Metformin for diabetes . ( but not P.A. )
But Pernicious Anaemia is the largest cause of B12 deficiency . it is an autoimmune condition , and as such , seldom comes alone ( there are over 100 autoimmune conditions - the most common to accompany P.A. is Hashimoto’s thyroid. Most PA patients have 2 autoimmune conditions . ( I have 3 !) Just want you to be aware of this . ……
The founder of Pernicious Anaemia Society did that because of the ignorance shown to patients . Martyn Hooper had written several books on the subject ( available on Amazon )
I’m sure that you will make progress now that you are better informed . You will always get a response and help from this forum —Best wishes .
I totally agree with Wedgewood with EOD, folinic acid, cider vinegar.
Darling, you have to heal first before thinking of your career or studying. If you have untreated P.A. for years then one thing at a time.
Let us get you better first before anything else.
Do not even think about studying or planning for a year. Then see how you feel physically, emotionally, whether you have the stamina to undertake studies and juggle that into your life. Review it. If you are not ready, wait another 6 months and review. We live with a chronic illness(es).
You are doing marvellously well working part-time. P.A. is poorly understood but there are many educational programmes, seminars, conferences occurring both at a medical level and further up the chain of command.
I am a clinician that knew nothing of P.A./Autoimmune Metaplastic Atrophic Gastritis (AMAG)/ Vitamin B12 Deficiency. However, I have and do continue my studies as do quite a lot of us. A quick shout out to Technoid, who has exams. They are studying Nutrition which is Biochemistry and lots of other stuff.
What do I do ? Well let us just say midwives can get up to a lot things. They do not have to work in hospitals, deliver babies or run wards. They can indeed ensure that Patients are being treated for in a safe and respectful manner.
If I was still undertaking hospital work and caring for you, I would have popped you into a High Dependency Unit (HDU) to start as you had/have neurological symptoms. We would discuss your mobility, ability to toilet yourself, shower yourself etc but rest is extremely important. I would also ensure that you had proper dietetic input.
Then when appropriate, through discussion with you, I would then transfer you to a lower level ward where nurses would come and do their checks on you. I would have already made the referrals to the appropriate health professionals. So, an occupational therapist (OT) and physiotherapist (physio) would pop along to see you.
A gastroenterologist, haematologist and neurologist would have seen you or given input whilst you were in HDU. Then when your Care Package was all in place, so you were supported in the community by the OT, physio, dietician and whoever else, I would quickly leave my ward to give you a hug, say goodbye, wish you all the best and tell you, You know where and how to get hold of us, if you need us.
Thus ensuring you knew emergency numbers when warranted, what urgent means, if you felt ‘under the weather’, symptoms were not improving or you were relapsing and what to do in those circumstances.
Now, who creates the clinical pathways and algorithms for patient care is the the real question.
Thank you. You sound like such a kind and caring medical professional. I really wished you would have been in charge of me instead of some of the GPs I've had. My psychiatrists always focused more on controlling my anxiety and depression just enough so I would attend school but otherwise they just shrugged or did not care if my physical and mental health was okay. As for work and returning to school, I think I will monitor my symptoms closely before I return full-time. I still struggle with getting up early, getting my things ready, preparing lunch, and gathering myself up so I can focus on work or school assignments even if it is just part-time work and school.
Exactly, my darling, slowly but surely does it. I am very sorry that you have been unheard and how much you have struggled. These silly monkeys. I must let you know that I follow my grandmother, she has a very sarcastic tongue. On one occasion, a doctor had a hissy fit in the operating theatre. I put my hand on my hip, looked him up and down and said, Finished ?
Telling him, you do not throw your toys out of the pram in front of people. Then with the girlies, on the ward, I did an impression of Austin Powers, Oh Behave, Welcome to my Lair.
It is very important to have a little giggle once in awhile.
The mis-diagnosis, under-diagnosis and mis-treatment of people with B12D/PA is one of the most egregious scandals ever for the medical profession. It is painful to hear others' stories as well as to experience the illness myself. I have a deep sense of outrage as the scandal continues with each new story of ignorance, and the continuing neglect and abuse of sufferers. I am deeply grateful to the remarkable empathy and knowledge shared by the people of this forum. It makes the journey bearable.
hey you, sounds like you are doing your very best and that is all you can ask of yourself.
My symptoms of Hashimoto’s and vitamin deficiencies have definitely impacted my schooling, I describe myself as a late bloomer. I scraped through A Levels and Uni in the mid 90s. My memory has been a big problem and I’ve always struggled with team sports.
I’m here to say that you are young and can give yourself a break on this. I’m 49 have just completed a second teaching qualification, work full time teaching A Level (16-19 age) Geography and Politics and mentor new staff colleagues.
Remember our conditions and struggles give us a unique wisdom and coping strategies which others really benefit from.
You keep on keeping on, take up your space and know you are making a difference, learn from any screwups and remember we all make them. Enjoy your recovery journey 🤗
As others have said, you need way more B12. Every bit of your body needs it to heal. Yes over the years of (not realising I had)cobalamin deficiency, before my full PA kicked in, my career went into reverse, I went from manager to shop assistant, from making money and teaching my art to minimal production. Looking back it's amazing the excuses I made to myself, to justify doing less! And nobody seems to notice, you just disappear from life. At one point I swear my family thought I was into drugs and alcohol, not helped by me muddling my words and once accidentally saying I had cirrhosis, not psoriasis!!
Do try sublingual spray, do self inject, it's not hard. Big hugs.
I would make up words, the dufus, the whatsamacallit, the thingymagig, you know. Absolute drivel would come out, trying to express myself. It can be a tad frustrating but now I laugh. Some words have become part of my collection. Plus, nobody actually believes that the Welsh word for a microwave is a ‘Popty Ping’ anyway.
My personal opinion which has developed over the last three years is if at anytime in my life, I am 68, had I been treated for B12 deficiency my life would have been easier.
It is also my personal opinion that if the symptom seem to fit the risk and angst associated with injecting 1 mg of hydroxocabalamin every other day is worth the risk and expense. B12 has no know toxicity at any level. The risk of infection from self injecting I find to be minimal.
I did well in college only by taking few classes or one at a time to mitigate a life of B12 deficency.
No one ever thought I was not bright. No one ever knew I was B12 deficient.
I printed out this web page and highlighted what was applicable for me. It helped navigate what other supplements to watch for.
I had no real idea what I wanted to do, other than something to do with science. I had worked briefly in retail [learned a lot about customers] and an industrial lab [learned about hovercraft skirts and taught others how to rivet]> My parents would not support me to do further education, but I met someone who worked in a Pathology Laboratory. I decided I'd give it a go; found a hospital job and studied part time on 'day release'. If I'd spent less time as a part-time musician, I'd have done better but had less fun. I worked my way up the greasy pole with more and more College exams, University courses and collecting more letters after my name. I eventually became a 'World Expert' in a very narrow field too! I didn't mention a college romance, a marriage, and we're still together 50 years later.
Having found a job I enjoyed, it came easier than otherwise. However, I retired at 60, and wondered why it'd taken me so long... So now, I can sit at home, looking after my garden, and joining in with discussions on here.
So, in terms of what to do, and what to study, get your treatment sorted and under control, and in the meantime, ask yourself what you find interesting, and look for opportunities in that field. Find someone who is already doing it, and I'd be surprised if they wouldn't tell you why they enjoy it! It is never too late; better to get it right first time, but if not, you'll learn from that too. There's no wasted experience.
Good luck, good health, and keep in touch with us.
Oh what a journey you have had and you have certainly been let down big time by the medics. Unfortunately they rarely understand that B12 is so fundamentally important to our brain and body function and repair.
BUT today is the first day of the rest of your wonderful life in the clear knowledge that you now have access to an insane amount of B12 knowledge and warm and caring support on this forum.
You are still young and whilst suffering as you have been, you have gained invaluable insights which will be useful in your life ahead.
Now must be recovery time and once recovered and your condition is well managed you can resume studies with energy and vigour unlike before. Be patient and you will shine!
Great advice from replies, and yes you need more B12 and you can’t overdose on it. Go for it but remember before you start bouncing you will need to heal and that is a slow process. I went from very low b12 to almost normal in a year but I inject twice a day as I am impatient to recover my former self!!
Querida GreenTamales 😋, as others have said, you need frequent injections to heal yourself, then you can consider your education. You are young and have your whole life ahead of you - your good health must come first.
Your other vitamin levels are very important, you need them in good supply when on injections, so make sure you get those tested, namely folate, ferritin, B1 & B6 if possible, plus vitamin D, then post your results here for advice.
I did a degree in photographic studies in my late 20s. I worked for years before that and wasn't ready to study. I 'found' my calling, or so I thought at the time, and it was a natural progression from studying it part-time in as adult ed class.
I'm 62 now and very ill, my B12 journey is complicated, and have had to give up my place on a masters degree in art and place. I am gutted but had no choice. You still have those choices, so all is not lost x
It finally dawned on me that my diet was low quality in terms of providing nutrition. I don't cook, and I looked into it enough to know that learning how to cook and creating a generally nutritious diet wasn't going to happen. I didn't know anything about food groups and started with protein, and it was obvious that I was getting nowhere near recommended amounts, so I began supplementing, and I felt much better within a week or two. I now buy 5 pound containers, vanilla and chocolate, and have half of the 32 grams in the morning (vanilla), and the other half in the evening (chocolate). In addition, to ameliorate the effects of GI damage, I take 6 grams of fiber in the late morning and 6 grams in late afternoon, and I think that has helped me a lot. I mix each of the four batches (two fiber, two protein) in a blender, so that is four times a day, each with ice. I burned out my old, seldom used blender, and replaced it with what seems like a heavy duty Ninja countertop smoothie blender, which does an excellent job, much better than my old blender.
In addition, following recommendations from this forum, particularly from Technoid, I take several other nutritional supplements, several in particular because they are thought to facilitate nerve repair and regeneration.
I have just completed my second year of daily B12 injections. My rationale for daily injections goes something like this: B12 is not toxic at any level. My only chance of regaining lost functioning is B12. There has been no valid, reliable research on treating B12 deficiency nerve damage with B12 injections, so no one knows the optimum dose or the optimum frequency; however, browsing through reports of the low-quality research that has been done, two trends seem to appear, one of which is that patients who get more B12 tend to do better than patients who get less B12, and patients who get B12 more frequently do better than patients who get B12 less frequently.
Like you, I went years with increasing severity of B12 deficiency symptoms before I was diagnosed, and then I was placed, inappropriately, on the treatment recommended for patients with blood symptoms (injections daily for a week, weekly for a month, then monthly), rather than the treatment for B12 deficiency with neurological symptoms, which again is somewhere between daily and weekly (again, no research is ever cited with treatment recommendations, so apparently the treatment recommendations come from the anecdotal experiences of clinicians. (I welcome correction if the preceding statement is not correct.) The common recommendation of daily-weekly-monthly apparently comes down to us from work 60 or more years ago treating patients with blood symptoms (pernicious anemia), which apparently responds much more readily to B12 treatment than does B12 deficiency with neurological symptoms, which can improve very, very slowly over many years. Hence the advice from others that you be patient, sticking with the work/study schedule that has proven to work for you until you are receiving treatment that is appropriate for B12 deficiency with neurological symptoms and you are able to see your personal patterns of feeling good vs not so good.
You might try one more time to convince your doctor to increase your dose to daily or every other day. One source of information that has been helpful to me is from the Mayo Clinic Proceedings, a peer-reviewed medical journal. The first column is a brief, very concise description of the problem: Medical schools have been incorrectly teaching that B12 deficiency is always accompanied by enlarged red blood cells, ie, is always blood symptoms, when in fact, many patients have nerve damage while blood test values are within the reference range. Next is an enlightening set of six patient profiles. On the second page is a text box listing things doctors often get wrong. Further along in the article, under the heading, "How should treatment be given", the article describes the general treatment (daily-weekly-monthly), but then adds the treatment when a patient has neurological symptoms. You might consider printing out the article and taking it with you to show your doctor. If the doctor remains intransigent, consider looking for a more skilled doctor such as the one who diagnosed you.
Agree with everything you said WiscGuy but I will make some nutritional points 😁
Good idea to make sure you're getting sufficient protein for sure but most people do get enough unless they're eating very little food overall. A good target for older adults is 1.0 to 1.2g/kg body weight. Cronometer can help you to see if you hit the mark on a typical day (its a bit annoying to use but one sample day is enough to give you actionable information).
I wouldnt get overly focused on protein to the exclusion of other parts of the diet. Protein is important for sure but there are many other things in a healthy diet that are equally important.
If I can horribly corrupt that Michael Pollan quote: eat whole foods, mostly plants, get enough protein, take an RDA multi and keep the B12 going in LOL. My profile has more info so I won't drone on at length but direct you there for more info if you are interested
Diet first. Supplements second. But both important 😁
If your GP doesn’t play ball then please consider joining the self injection brigade. Choose your battles and sieze life - it doesn’t have to stop because of PA.
My job was as a professor of computer science. I am retired now but still supervising a student and doing research. I am an ice hockey fanatic and this week I have 8 games over 7 days plus 5 dance classes. I got into a state where I had lots of brain fuzz and was sleeping around 16 hours a day before my diagnosis. I did not ever get as sick as you did. I did OK on supplements (1000mcg, sublingual) but eventually had pain and tingles in my toes and had to switch to injections. I am so sorry it took them so long to diagnose your troubles. I believe that you can probably reach a completely normal state. But that you are at the stage that you should be having injections every day or at the bare minimum, every other day. I had problems doing research (in graph theory and computer science) when my brain was fuzzy. I made a complete recovery! Hang in there and keep up frequent B12 until your symptoms clear up. You won't be able to stop having B12 then if you have pernicious anemia, but can possibly have injections less often. Your depression may be a separate thing, but it very often comes with the low B12. You may not need the Effexor once you get your B12 levels back into balance. If at age 62, I can do research, dance and play so much hockey, then at your age you should also be able to have a good recovery. Very best wishes!
Hello, Tamales (Green type), I too am in the USA and I experienced much of what you describe. I cannot simply tell my story because it's too long, but I will say I am beginning to at least retain my sanity and think better (better that is not as I used to). I was diagnosed this past August with PA due to the blocking antibodies, even though the hematologist who DX'ed me said no way would an IF test be positive for PA because I looked too healthy. Anyway, finally after having all the issues with being diagnosed and even more issues getting B12 shots all the while being told I was crazy. My wife was told I was a hypochondriac and even diagnosed as having Munchausen syndrome, and my wife was advised to have me committed to a sanitarium. So this past September I had my wife give me B12 shots (Methylcobalamin), every day for the entire 30 days in Sept. I only missed one day (due to forgetting it). Then I went to every other day for a month and now I am having B12 shots every Monday, Tuesday, and Wednesday. You need those loading doses to start with and then you can fall back some as you decide what works best for you. I will tell you that when Drs. mention lab tests and lab values, most don't know what they are talking about as I found out. They said my blood results were 1600, (usual range is 200-900, but if you are below 600 or so, you are already deficient). They advised me that I did not need any more B12 or it could kill me. Not true and also if I had listened to them I'd be dead now.
I feel better but I am still going to see if this works for me. I tried the Cyanocobalamin, but I think the Methylcobalamin works better, at least for me. I have listed below two books for you and even though I don't know where you are in the US, I am also including the place where I purchase my B12 (they only have Methylcobalamin, but it's cheaper than anywhere else I've found). Not sure if they mail B12, but I think they do, (they pack them in ice packs to keep them cool and usually include needles as well). And ask for the thinnest needles as the thicker ones hurt more. OK, so with what you already know plus if you've read this, you know more than most doctors do about Vitamin B12 deficiency and or PA.
Anyway here's the information.
BioRenew Functional and Integrative Medicine
Phone (+615) 603-8957
1747 Medical Center Parkway, Suite 330
Murfreesboro, TN 37129
Books
Could It Be B12 by Salley Pacholok, R.N., B.S.N.
and Jeffrey J. Stuart, D.O.
What You Need to Know About Pernicious Anemia & Vitamin B12 Deficiency by
Great advice. Good to hear you have been diagnosed with PA. Please keep a note of date, time, by whom, speciality and where.
People who audit, are just factual and objective. We work back to front, upside down, inside out, sideways. Wherever the data takes us.
You were misdiagnosed on whatever time, date, by whom and where with a factious disorder. It is misinformation and is to be removed from the records held with your name, date of birth, address and any other unique identifier.
Good to read you are on the mend. May it progress.
GreenTamales it seems like you've already gotten many replies with good suggestions for how to proceed with you B12 treatment, so I will just add to say I welcome you heartily to this community and I'm so glad you reached out!
Your description of the symptoms you've struggled with and all that you've gone through since adolescence is heartbreaking. I was diagnosed about a decade later than you, and it sounds like your symptoms were unmanageable at much younger age too.
I also had problems in college, and even later high school. A common theme for me was not being able to fall asleep at night or wake up in the mornings. I struggled with concentration and organizations, frequently turning in assignments late. I needed help from my academic support offices, and I took an extra semester to graduate college. Even once I had a full-time job, I would routinely arrive 15 minutes late to work, even though I was terrified I would be disciplined. I just COULD NOT wake up.
It's not easy, and I think you're incredibly brave for having gotten to the point you're at currently. One thing I would recommend, if at all possible, is to try to make connections with anyone and everyone who seems even mildly supportive. Looking back, I can see that many kind people really went out of their way to nurture me and lift me up, before I was diagnosed with PA. Those people often advocated for me and protected me, even though they (nor I) understood why I struggled so much with things that made me seem 'lazy.' I know it's hard to seek connections when you're always tired and you feel so badly. I do want to encourage you that there are kind, good hearted people who WILL listen to you and believe you about your struggles. Really lean on them if at all possible. Trust yourself to know who those people might be, and know it might take time to figure out.
Know that I'm cheering for you and I think you're amazing
Hi I was diagnosed in my early 20's also but was severely anemic since highschool. I was never able to continue higher education. I did manage a massage therapy program that went 6 months, but I was sick and worn out by the end of it. If it had gone on longer I don't think I would have been able to finish. When I began work as a therapist I literally would almost fall asleep during session and slept between clients. My body eventually broke down and I began getting inflammation and raw hands. It was like my body just couldn't heal itself or recover after a days works. I was on monthly injections of cyanocobalamin back then which eventually progressed to weekly, twice weekly and now daily. I was not able to and have not been able to hold a full day job for more than 6 months to a year without beginning to physically go down hill. There are to many factors being out of the house that affect my health; chemical sensitivities, etc, they just affect my body to greatly and it just breaks down over time. I am know 37 and stay home with my 3 kids and have been unemployed for the last 9 years when I started having kids. I take injections daily; a half injection in the morning and one before bed. I went a long time with poor care and not enough b12 that I have neurological issues that come on quickly without the twice daily injections. I have had a hell of a time fighting doctors to keep my prescription or even be able to fill it. I have broke down and now order it which is really too bad since my husband pays an arm and a leg for health insurance and I can't even use it for my injections.
Although I will say that you may be able to achieve higher worldly success than I have. I did not have a support system to help me navigate my youth successfully much less my medical issues do it has been all trial and error and a whole lot of sucking it up to keep moving forward. I feel very blessed to have found this forum.
PaintLadie, I'm so glad you're on this forum too! I think you are incredibly brave - I can relate to your fight to keep your B12 Rx and even get it filled. I dread each month because for whatever reason pharmacy techs seem to think they need to micromanage what my doctor has prescribed.
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Question about anemia
Refused B12 test
Pernicious anemia/Iron/Thyroid problems?
Anemia symptoms better then worse?
