PLEASE HELP!

Hi, my name is Kennedy, I am 21 years old but I feel like I'm 90. It all started at the end of May/ beginning of June 2016 with nausea, vomitting and heartburn no matter what I ate. My GP thought it was a virus, walking pneumoia ans then GERD. Things started to ease up a bit in August as I headed back ro school when my anxiety took me out forcing me to drop my classes and a few days later my symptoms returned and intensified, bringing new ones with them. I was referred to a GI specialist who after a few tests including a HIDA scan showed my gallbladder wasn't functioning and on Nov. 16th 2016 it was removed. I ended up in the ER that night with what they claimed was an allergic reaction to pain meds, but seeing as it has happened since then I think it was peripheral neuropathy, I had intense tingling pins and needles all over my body, couldn't walk without assistance and my hands were stuck in constant spasm. I was sent home hours later both times and told to follow up with my GP. A few days later my symptoms returned again bringing even more with them and was sent back to the GI who without doing a physical exam or any blood work told me I had IBS but my symptoms didn't match. He refused to treat or listen to any symptoms he deemed not to be a GI problem (upper abdomen pain he said was muscular, pins and needles in my constantly cold hands and feet, fatigue, significant weight loss, and shortness of breath). He told me to come back in 3 months and I knew I couldn't wait so I did some independent research as I got my CNA my junior year of high school. After using the medication to no prevail it was back to my GP after discussing all the new symptoms my Dr. ordered some tests all of which looked normal. By this point I'm not eating much, not going to school, unable to work and progressively getting worse with no answers and a Dr. who was not listening and didn't seem to care. After a friend suggested having my vitamin B12 levels checked I did some research and had to beg my Dr. to test it at my next appointment it was low at 240 and I am vitamin D deficient as well. I again did some research and was directed to a page about pernicious anemia and all of the symptoms fit like nothing else I had discovered. She tested intrinsic factor and when it came up normal she stopped put me on some supplements and told me we would recheck in 3 months! 3 months, what was I supposed to do sit around and keep getting worse?! I decided to switch GPs and my new one is pretty receptive. Because of symptoms involving my eyes and head she ordered an MRI of my brain which showed a brain lesion. At a neurologist appointment she said she couldn't take MS off the table but didn't necessarily think it was that either. To me this lesion points even more toward PA as I read a study that stated low B12 is associated with increased severity of white matter brain lesions, in my case I think it may have caused the lesion. But the B12 and parietal cell tests came back "normal" B12 was around 500 but I'm taking supplements. This broke my spirits because after a year of hell I just want the answers and this is only making it harder as doctors think it rules out PA but I have read people can be negative for parietal cells and intrinsic factor and still have PA. To make things worse my CBC has been normal no signs of anemia but I read 50% of people present without anemia.

My symptoms include: nausea, vomitting, heartburn, epigastric pain, headaches, pins and needles in hands and feet, cold hands and feet, fatigue, lightheadedness and weakness, bloating, diarrhea, loss of appetite, weight loss, mood changes, chills, shortness of breath, brittle nails, unsteadiness and balance problems, fast/ irregular heartrate, eye pressure and pain, floaters in eyes, pale/ yellowish skin, easy bruising, ringing in ears and low grade fever.

Autoimmune conditions seem to run in my family on my dad's side (lupus, crohn's, and hoshimoto's) and my sisters have lupus and down syndrome respectively. I was just in urgent care today and they want to send me back to my GP (who tried to pass me off) to do a colonoscopy possibly. This has been going on for a whole year now, I have lost 100 pounds, had to miss my grandfather's 75th birthday party as I was in ER, I can't work, I can't eat much and I just feel like I have reached my breaking point. I just want my life back. I would appreciate any advice.

19 Replies

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  • Wow kennedy333 I'm not medically trained so cannot give you any answers but can ask a few questions.

    What are the B12 supplements you were taking?

    Do you know what your Folate and Iron levels are?

    Are you being treated for your low Vitanim D?

    Was nitrous oxide administered as an unaesthetic during your gall bladder operation?

    Hopefully there are others on here who will be able to give you good advice.

    I'm a 75 year old who's had P.A. for 45 years so I can empathise with you as it took me 13 years after gastric surgery to get a diagnosis and treatment.

  • I was taking 1000 mg of B12 daily and weekly prescription vitamin D. They have never tested my folate or iron only CBCs which they tell me don't show anemia. I have had to fight for the levels with my previous GP to even get her to do them. I actually don't know if nitrous oxide was used during the operation, is that something that could help me figure something out?

    Thank you so much clivealive!

  • Among those who are at risk of developing a B12 deficiency are people who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

    One of the more knowledgeable Admins on here says:

    "Nitrous oxide (gas and air) interacts badly with B12

    Nitrous oxide is a super-oxidiser when it comes to B12 and converts it to a form that the body cannot use, so if you had an absorption problem and couldn't replace your the oxidised B12 with new B12 then it would be a permanent problem.

    Nitrous oxide isn't a local anaesthetic so suspect it isn't used for most day surgery but if you have any doubt then I would suggest that you contact the hospital/surgery where the operation was done and ask them to clarify".

    I hope this helps

  • It brings a new idea to my research and is very interesting considering my surgery was in Nov. Of 2016 but I did not find out I was deficient until the following January. Thank you for all your help!

  • Hi,

    Are you in UK?

    it can be helpful for people to know which country you are in as different countries have different patterns of treatment for B12 deficiency.

    B12 websites

    Some info below may not apply if you are not in UK.

    B12 deficiency Info website

    b12deficiency.info/

    PAS

    PAS has members from around the world.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

    Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    In USA?

    b12awareness.org/

    Book "Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

    The book is very comprehensive and mentions about nitrous oxide, has lots of case studies.

    UK link about nitrous oxide

    gov.uk/drug-safety-update/n...

    Lots of B12 info in pinned posts on this forum.

    "I have read people can be negative for parietal cells and intrinsic factor "

    In UK, it's recognised in recent guidelines that it is possible to have Antibody Negative Pernicious Anaemia. See below

    stichtingb12tekort.nl/weten...

    b-s-h.org.uk/guidelines/gui...

    I am not a medic just a person who has struggled to get a diagnosis.

  • Sorry I did not even think to mention that I live in the US. I appreciate all of your help and knowledge!

  • Your symptoms seem very similar to my 24 year old daughter. She has been struggling for 3 years. She has pernicious anemia and was recently diagnosed with lactose intolerance after undergoing a endoscopy and colonoscopy. Are you in the states?

  • I am in the US. How long did it take for your daughter to get her diagnosis? What tests helped to figure things out?

  • "Autoimmune conditions seem to run in my family "

    With a history of auto-immune conditions in the family, it may increase your chances of developing one. Have the auto-immune conditions you listed in your first post been excluded as possible diagnoses in your case?

    Who gets PA and B12 deficiency?

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

    pernicious-anaemia-society....

    Have you ever been tested for Coeliac (Celiac in USA ) disease?

    coeliac.org.uk/coeliac-dise...

    PAS membership

    Although PAS is based in UK, it has members from around the world. There is one local PAS support group in USA, in St Louis, Missouri. I'm sure PAS would love to hear from anyone who wanted to start another USA support group.

    pernicious-anaemia-society....

    As you're in USA, I'd recommend getting a copy of "Could it Be B12 : An epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart.

    It's a very detailed book about B12 deficiency.

  • The other conditions have been excluded based on symptoms and other tests, something in my gut ever since I have read up on PA is telling me that this is the answer, never felt that before. I am definately going to get that book! Thanks for your help!

  • Reading the book "Could it Be b12" was a lightbulb moment for me. I felt like I finally knew part of what was wrong with me.

    Has "Lyme disease" been excluded as a possibility?

    lymediseaseaction.org.uk/

    A UK website about lyme disease.

  • No it has not in my opinion I was stuck with drs who would not listen and who I have had to fight to try and get answers. Thank you for the new leads!

  • All of your problems sound just like me! I've had every test done. My b12 was right around your range, I had 10 weekly injections of b12. No test is showing pernicious anemia for me. So frustrating, I've been in bad shape for over a year. I've read the book "Could it be b12" and it was me to the page! I'm also the same age. Good luck - I hope you can get some answers!

  • So sorry to hear that! When you were on the injections did you feel like they helped? I am reaching my breaking point but so encouraged to know that there are others like me out there. Have you had a schilling test? That is what I am currently thinking of getting.

  • So sorry to hear that! When you were on the injections did you think they helped? It nice but also disheartening to know that there are others out there struggling like I am.

  • I saw a hematologist who studied under Shilling & she said the test is outdated. But she ran an intrinsic factor which was normal. That test tells you if you absorb vitamins in your gut. She claims this test is 100%, it's not. From my research it's 50/50. I no longer have faith in any doctor. Unless you get any test that's screaming abnormal it's just brushed aside. I did feel a bit more energy while on injections. I do have depression & now it's gotten worse, but I'm also on birth control pills, which are known to make depression worse, but have been in them for a year. And I can't get into my Gyno until August! I may just need to stop those & see what happens. Still feeling like I'm crazy.....

  • I wonder what her basis is for "outdated"?

    At least in the UK, it is impossible to get the substance to do the test. Withdrawn during the BSE (mad cow) era, as it contained some bovine substance(s), and never returned.

  • Also remember that PA can cause psych problems such as depression and anxiety to worsen. I have been stuck with a bunch of bad drs too and it sucks like you are not being heard although you are the one experiencing it! Its just such a horrible spot to be in.

  • I'm worried that my anxiety & depression should be better with the injections I've had. As I stated to another member I may need to go off bc pills & see if that helps, -although that scares me also.

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