Im 20 and have just been diagnosed with prenicious anemia as well as an iron and folate deficency. My doctor seems very reluctant to tell me anything about it littlelone treat it. I have had one B12 injection and felt far more tired and run down than i did beforehand. Can anyone tell me about this? Also should I be under the treatment of a specialist or is my doctor enough?

I am 29 and have pernicious anemia also. I was originally diagnosed with Guillian Barre Syndrome, but after blood test, discovered I had pernicious anemia. I had it so bad that my hands and feet were numb all the time and my legs were so sore I could hardly lift them. It is my 12th week of this thing....my doctor sent me to a neurologist who discovered this. I have just taken my 4th b-12 injection and I have to say I feel the best I have in a long time. Energy like I never thought I could have again!! I have taken one shot once a week for a month (1000cc each time) Now I will get one once a month for 4 months, then take a blood test again to see how it looks. I have to tell you, the first shot did nothing for me either. It was not until the 3rd that I really started feeling better. This last one has made a big improvement!!!! Give it time and it will get better, I promise. it is odd that we have this at such an early age. Mostly older adults develop this. My mother was diagnosed with it 4 yrs ago. The doc thinks I may have inherited it from her. Feel free to email me I know how you feel!

Thanks for replying. It's nice to know im not the only young person with this horrible thing. I changed my doctor and he is of the opinon that i will know when i am in need of a B12 injection. I now have one every 10-14 days but usually by the seventh day im feeling bad again. Im going to have my levels checked again on Friday so it will be interesting to see if there is any improvement or not. How are you feeling now? Ive now had five and no longer feel so drained, but I also dont tend to push myself anymore and if I need to sleep I do so. Hopefully after a few more months of treatment we will both start to feel better!!

I was diagnosed with pernicious anemia when I was 34 years old. I went to my doctor with alot of seemingly unrelated ailments and the doctor treated me as if I was a hypochondriac. He sent me home and I got sicker. I went back about a month later and he still felt the same way even though I was visibly ill. He then took a blood test and called me back later that night to tell me that I was severely anemic and I should go into the hospital at once. I was so sick that when I went into the hospital I needed two pints of blood. Once in the hospital, a hemaetologist took a sample of bone marrow from my pelvis. About an hour later he came back and sat down and told me that I had Leukemia. He went over a schedule of chemotherapy that I would need and also told me that I had a 75% chance of being around in five years. I went into surgery the next day and they installed a Groshong catheter into my chest that went down into my heart. This was to be used for chemotherapy. I sat for three days thinking that I had leukemia and assuming that I would have to go through all sorts of harsh treatments until another doctor came in. This was about six hours before treatment was to start. He told me he did not think I had Leukemia but what I really had was Pernicious Anemia. I was sent home to await the findings of the bone marrow sample. I was given B12 shots and began to feel much better. Many things that were bothering me, sore tongue, tingling hands, and so on, felt better. My doctor told me at this point that it might still be a malignancy, as if his ego was bruised from being wrong! I later took a Schilling test that confirmed Pernicious Anemia. I am still, one year later, tired alot. I get B12 but I have been trying to find someone with a little more experience in this area.

Kezza,

You should be getting shots on a regular basis, not just when you think you need one. By the time you realize that you have no energy, your b12 is at a low level. I had been getting the shot once every 4 weeks, but I noticed by the time I got to that 4th week, I was dragging. So I get the shot every 3 weeks. Why wait until your body is in need of it? You can't overdose on b12, but lack of it can cause a lot of damage. Find another doctor, yours doesn't sound like he knows what he's talking about.

After six (6) years of increasingly intolerable symptoms, I was diagnosed with pernicious anemia in 1992. I was so ill by then that I had to be wheeled into the hospital for the schillings test in a wheel chair. Robert - I also had been treated by my doctor as if I was a hypochondriac! And, at one point I was told that I probably had Multiple Sclerosis. That really frightened me because my grandfather had been completely incapacitated due to MS. All the while, my doctor never performed a simple blood test which would probably have resulted in a much earlier diagnosis, and
less damage.

Kezza - I agree with Jennerizer that your doctor does not seem to know much about this condition. You must get your B-12 shot on a regular basis, and not just when you begin to feel bad. In the beginning, I had my
shots weekly for about five (5) months until my B-12 level was in the normal range. I now give myself injections every three (3) weeks. It took about a month for me to begin to feel like a human being again, and it was nine (9) months until my hemoglobin level was normal. The thing that bothered me the most was my inability to think clearly. It took me about 18
months to get rid of the "foggy brain" and to begin to feel like I could think again! Believe me, everything does get back to normal- just give it time!

[This message has been edited by jensmith (edited 08-22-2001).]

Hi I am a 32 year old female that has been diagnosed with pernicious anemia. I am trying to sort out my symptoms and make sure that it is typical of this disease. I have been recieving shots for this for more than a year. I was told that I would begin to feel better within 6 months. It seems like things are going very slow and I need to know if this is normal. In my life I have been diagnosed for these same symptoms since I was 8 years old, starting with growing pains. I have been scared by Doctors with terms like MS MD Fibromyalgia, Insanity (well not exactly the word insanity but pretty close). I could leave a list a mile long of complaints about the way I feel but that would be both boring and painful. So I will describe it this way: I feel like some one has poisoned me and then I got into a car wreck. Any one understand what I am talking about?

Hi, i was wondering if anyone has had gastro trouble with this anamia if so could you describe it. I have had a burning tongue for a while now had it checked. Two months before i got this tongue problem i had a blood workup and it all came back fine. Any help would be appreciated.

Hi All

I guess I have two question. 1. What is Prenicious Anemia? 2. Can any one tell me if 6.4 for Hemoglobin is really low? I had some blood work at the dental school and they told me my Hemoglobin was 6.4 and Hemocrit level at 21%. Is this something I need to run to the emergency room with.

Please reply.

Kezza, it does sound like your Dr isn't well informed about pernicious and would suggest you seek a neurologist(their field)who can help you get back to feeling good. I was diagnose at 40 and probably had it for many years before but the Dr I was going to just sent me home and never told me. When I finally did go to another Dr he discovered I was diagnosed over 5 yrs earlier and couldn't understand why I wasn't treated. I took weekly injections for over a year before I started feeling better(I was at 116 for my level)and still another year to feel really great. It depends how low the level was and how long it will take to saturate all the tissues in your body before you can feel better and then it is a bit of a cat and mouse game to get to the level and keep it there. With mine it was 3 mil and month and then at 4 months check the level if I've gone down too much we do a weekly for 6 weeks and check again. Sometimes my level would fall too low so now my my schedule is 2 mil every 2 weeks and will have the level checked in 6 months. I usually give my own in the thighs and my hubby will do the arms so there is constant rotation.

I have been diagnoed with a B12 deficiency and an acid stomach. I had all the symptoms of the deficiency numb hands and feet, heart palpitations, the worst was the memory problems and fatigue. I have some diarrehea but never a normal stool. It has been 7 months since I started receiving monthly injections and I still don't feel much better. I feel as most of you do who have been diagnosed with pernicious anemia. What kind of specialist does a person need to diagnose pernicious anemia. I have been to a neuralist and he took the word of a gastroenterologist who said I probably had pernicious anemia because he found an acid stomach of ph6. My internist said I did not have it. I have been tested for all the known causes of Vitamin B 12 problems and ever thing comes out normal. Who do I see now?

what a relief to see so many stories so similar to my own,I really thought I was going crazy.
Does the liver start to store b12 again or not? I'm a little confused about how the shots work

Dear Sam9, I don't know if I have pernicious or not, but but I did have a very low B 12 level at 104. Normal is about 246-800 something. If you have pernicious anemia you have to get the shots for the rest of you life because you stomach is not absorbing the B12. It has lost the ability to absorb. B 12 by mouth can not be absorbed so supplements won't work.

Thanks for the info jgates.
I am going to change my dr .He doesn't seem interested in performing any other tests, even a schilling test to see if I truly have pernicious anemia and not h.pylori or anything else. I am asssuming the difference between b12 deficiency and pern. anemia is a low red count and not just a low b12 which is the only thing I seem to have?

Before my diagnoses of AD(Alzheimer's)I was tested for everything in the book.i have Pernious enemia too.Everyone one has an intristic factor in the stomach.We who have this type Anemia do not.Taking B-12 injections will be the rest of your life thing,Kezza.oh,I suggest you get a new Dr.who knows what's going on & will talk to you.I wouldn't have any other kind of Dr.

------------------
SnowyLynne

This article on pernicious anemia contains information on symptoms, diagnostic tests and treatments:
http://www.nlm.nih.gov/medlineplus/ency/article/000569.htm

The clinical trials site is useful if you're interested in learning about the latest treatments for all the different types of anemias:
http://clinicaltrials.gov/ct/gui/action/SearchAct ion;jsessionid=5952A462E0C1F07790E3C3E5B 605A214?term=anemia+%5BALL-FIELDS%5D (http://clinicaltrials.gov/ct/gui/action/SearchAction;jsessionid=5952A462E0C1F077 90E3C3E5B605A214?term=anemia+%5BALL-FIELDS%5D)

sylpat:

According to the Merck manual tables, your Hct is very low. You should see your doctor.

The diagnostic criterion for anemia in men is RBC < than 4.5 million/µL, Hb < 14 g/dL, or Hct < 42%;

For women, this criterion is RBC < 4 million/µL, Hb < 12 g/dL, or Hct < 37%.

< means 'less than'.

BTW, blood disorders including pernicious anemia and leukemias are usually treated by Hematologists.


[This message has been edited by Jay Tor (edited 07-17-2002).]

~* Hi all, I'm new to the board AND anemia... my hct count was 34%... and I was diagnosed with anemia. They put me on iron supplements but the level has not changed, nor has how I feel changed. My question is, how did you know you had pernicious(sp) anemia? In that simple blood test they give you, does it tell them the specific kind of anemia you have, or do they just diagnose by your symptoms?? If anyone can help, I would appreciate it. *~ Kristin

The Shilling test is the most reliable for detecting pernicious anemia. When the blood test is done they specifically test for just that B12 which shows whether or not you have the intrinsic factor. You can have a low B12 and still not have pernicious anemia but that is in normal people. B12 is one vit that the body needs little of and a normal person looses very little over long periods of time. Pernicious anemia is dangerous for us with no intrinsic factor as we will continue to decline in B12 at a fast rate into the depths of serious consequences. B12 injections will be for the rest of your life, oral will not do as the B12 has to bypass the stomach in order to be absorbed into the tissues etc. I was diagnosed 7 yrs ago and we still have trouble keeping the level above 1000. I get injections every 2 weeks, actually I give my own in the thighs.

My mother and grandmother both had prenicious anemia.
My sister and I were both told we could both have a
mild case or it could possibly skip a generation. I
am now 50 years old and have not had any problems until recently. I have always been tired but nothing
out of the ordinary ( I don't think) Recently I have
started having nose bleeds two - four times per week.
Is this a system anyone else has experienced. My
doctor advises this is a sign of anemia. He is going
to do blood work next week, but my mother always had
test where the marrow was taken from her pelvis...I
didn't think a blood test would be a true indication
of prenicious anemia. Has anyone else had trouble with nose bleeds. My mother is still living, but I do
not want to discuss this with her, it will upset her.

Hi everyone,
My doc recently found I had low b-12 levels (89), but I don't have pernicious aenemia, unlike my sister who does. Does anyone know what are the other causes of low b-12?

Thankyou!!!

Hi everyone,
My doc recently found I had low b-12 levels (89), but I don't have pernicious aenemia, unlike my sister who does. Does anyone know what are the other causes of low b-12?

Thankyou!!!

Diet is one way, if you are a vegan! Did he take tests to see if you lack intrinsic factor? That is the only way to be sure you do not have pernicious anemia. Blood tests specifically for detecting low levels of B12 and IF are very accurate as well as bone marrow aspiration. I had a gastric virus which left me with no intrinsic factor. Some General Dr will assume the level is low only due to diet without further testing. My level was 96, I'd see a neurologist, that level isn't normal and if you continue to lose B12 you'll be in big trouble really.

Thanks Nancy

Yup my doctor did check for the intrinsic factor...which apparently I do have. So its not pernicious anemia. I also eat plenty of meat, so its unlikely to be diet!

I've had two injections in the past two months, due for one this month, then my docs going to wait for two months until my next one. She's not keen on doing bloods, but I'm going to ask, because if its going to go down again, I want to know why. And if its fine, I dont need anymore injections. Have to be pretty forceful with my doctor unfortunatley.

Thanks for the advice.

I WAS JUST DIAGNOSED WITH PA. I HAD ALL THE NUMBNESS AND TINGLING IN MY FEET, HANDS,FACE, AND TONGUE. I WAS TOLD TO TAKE INJECTIONS EVERY DAY FOR THREE WEEKS AND THAN ONCE A MONTH AFTER THAT.ALL MY SYMPTOMS CLEARED UP. I HAVE JUST FINISHED MY DAILY INJECTIONS 2 WEEKS AGO AND MY NUMBNESS IS COMING BACK. DOES ANYONE KNOW IF THIS IS NORMAL? WILL MY NUMBNESS CLEAR UP ONCE I GET MY MONTHLY INJECTIONS

You may have to continue the injections to keep the level up. Have you been tested for the Intinsic Factor? If you lack it these injections are for life. If you have the intrinsic factor you may need to get the level back up and then take supplements(sublinqual is preferable)to keep it up. It is all a matter of the intrinsic factor being present or not as to how long the treatments will be and by what method of treatment you have.

I DO NOT KNOW IF I HAVE BEEN TESTED FOR THAT. I DO KNOW MY NEUROLOGIST SAID THAT THE INJECTION ARE FOR THE REST OF MY LIFE.
DOES ANYONE ALSO KNOW HOW MUCH B-12 ONE CAN RECEIVE IN A MONTH?

Depends on the Dr he may start you out with 100mcg every week for a month test the level and continue, I'm at 1000mcg twice a month now for life. They haven't found B12 to be toxic at high levels.

I have PA and was diagnosed in May 2003. I had a burning mouth and tongue for over a year and saw 5 doctors, one of which was a tongue specialist from Emory. I was not diagnosed until I was in critical condition and had to be hospitalized and had to have blood transfusions. None of the 5 doctors I saw had a clue. Ten months earlier, my CBC was excellent. Ten months later, it was almost as low as it could go and me be alive. Can someone tell me what a "positive" intrinsic factor blood test means? I had an IF blood test run and it was positive. Does that mean I have the intrinsic factor or does that mean I don't? Doesn't the IF have to be missing for one to have prenicious anemia? Or do I have that backwards? I had a bone marrow test back in May which confirmed I have PA. Does anyone know exactly what a positive IF test means? Thanks.

My note was written in 2003... wonder why no responses were ever made???

I wouldn't depend on "just injections", especially if it's cyanocobalamin (hydroxocobalamin is better choice). Sublingual methylcobalamin is a much better choice along with dibencozide (adenosylcobalamin). At least 1000 mcg taken daily....it WILL raise your B12 levels. It's raising mine.....no shots. I take 3-4 mg of dibencozide and 2 mg of methylcobalamin daily.

There's another forum where a woman had to have B12 shots every 4-5 days or she'd end up in her wheelchair. The doctor hated to give the shots so often, but seeing her come in with a wheelchair and almost see her walking out changed his mind. When she started the sublingual methylcobalamin, she didn't need anymore shots (well, to-date, she's gone 4 weeks without a shot and is still walking). Many people do well on the shots, but a lot don't--everyone has different requirements. Some don't convert the type of B12 in the shots well (the body uses methyl-b12 and adenosyl-b12 directly without needing to convert). Most doctors are WAY behind on B12 therapy and research. You can find many good abstracts and papers online with info about the various types of B12, etc.

Tab

I am 28 years old and I have been diagnosed with prenicious anemia also and my doctor gave me a b12 shot and I was told that I will have to get them for the rest of my life.

I was told that I need to get them 2 times a week.