I need help please. I have heart palpitations, headaches, hair loss and psychosis at same time. Doctor found severe anemia and thinks it is pernicious. She wants to do labcorp test for pernicious but they rule out if b12 normal. But you can still have pernicious with normal b12. Please what test is helpful? Is it that intrinsic factor? Reticulyte is normal and I read when severe anemia coupled with normal reticulyte then this points to bone marrow issues. Please any help is appreciated. Exhausted.
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Ecf123
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Yes ,you can have a normal B12 reading , but still have P.A. Trouble is , many doctors do not know this . I’d better tell you straight away that the medical profession in general has a poor understanding of Pernicious Anaemia. The IFAB test for the Intrinsic Factor antibodies can be very misleading . If you test positive , you definitely have P.A. BUT about 50% of P.A. patients test negative ! Testing negative therefore does not prove that you don’t have P.A. ,Again , many doctors don’t know this .
Lack of Vitamin B12 can lead to enlarged red blood cells which are produced in the bone marrow . These enlarged cells cannot get through cell walls leading to breathlessness, palpitations , exhaustion and psychosis .
A good doctor should be able to diagnose P.A. with knowledge of your symptoms (. I’m not saying that it’s easy because the PA symptoms overlap with other conditions. )
Even having a low B12 reading may not help you . I found out that my B12 was well below the range after I was tested when I was so unwell with the above symptoms , plus numb feet . I was sent on my way , without treatment , and dismissed as a hypochondriac. A private doctor who I couldn’t really afford , rescued me . I won’t bore you further with my brushes with the medical profession re P.A. .( I was lucky to test positive to the IFAB .which the private doctor gave me . )
I hope that you will get more helpful replies than mine . You have come to the right place . This forum is wonderfully helpful. Best wishes .
Omg you saved me a serious headache. I thought something was off when I started researching how none of the tests really mean you don’t have it if negative. I definitely have to get treatment or else wind up committed for life. It’s extremely frustrating the medical industry. I now have the daunting task of getting this treated appropriately. Thank you so much. You spared me a lot of wasted energy, which I have none of anyway lol.
If you read this forums posts , you will find that most of us are self-injecting B12 because we are unable to get sufficient B1/ injections from our GPs who trivialise our symptoms . Should you find yourself in that position , come back here and get the information that you need to self-inject . It’s easy and cheap ! Cost? about £1.50 for everything ampoule , syringe needles !
Wow I was just told by my gp they don’t do b12 shots! You are a lifesaver! I’m going to look that up now. Thank you so much! This is quite an experience lol
That is totally ridiculous .Tell your GP to consult the LATEST guidelines on the treatment of Pernicious anaemia.MUST BE THE LATEST GUIDELINES … When COVID hit , it was for a brief time suggested to use B12 tablets instead . Through the intervention of our Chairman , Martin Hooper , the guide lines were then changed back , acknowledging that Pernicious Anaemia is best treated with B12 injections . B12 INJECTIONS ARE FOR MOST P.A PATIENTS , THE ONLY EFFECTIVE TREATMENT . THEY DETERIORATE WITHOUT THEM .
I just went over old bloodwork and saw my iron levels dropped drastically right before first hospitalization. They were normal before psychosis. Do you have any idea why the levels drop suddenly or is it just years of low b12 kicking in. I’m in trouble. I’ve got to get my levels back. Iron saturation is 8.
Ive learned so much by reading the posts on this forum .for over 6 years . What has stood out for me is reading that P.A. patients are so very often terribly low with their iron . I’m sorry , but i do not know why . I don’t have that problem . i can understand your concern . .But i have come to the conclusion that P.A. patients are on their own , because of the ignorance and disinterest of the medical profession . There is no doubt that untreated P.A can cause mental problems . It happened to me Antidepressant tablets were handed out like sweeties , but after my diagnosis of P.A., only one injection every 3 months was allowed . No amount of pleading made any difference . It was intimated that i was a hypochondriac , when i asked for more regular injections . . .. But I’m sure that you will get treatment for your low iron . P.A patients have low or no stomach acid ( Hypochlorhydria/ Achlorhydria.( due to the destruction of the Parietal cells which produce both the Intrinsic Factor and stomach acid ) which can lead to poor absorption of other vitamins and minerals . Perhaps that is a reason ? That’s why i take a modest vitamin and mineral tablet .
PA . has so many different symptoms . We all get a nice choice from the “Pick and Mix .”
I hope that you can find a doctor who is knowledgeable and open minded . There must be some out there !
Finding out that i could obtain B12 ampoules from German online pharmacies and self-inject has saved me . My feet which were totally numb , now just feel as though they are burning ( feel normal to the touch ) So that is now irreversible . after 6 years of self injections .
Looking back on the gibbering heap of humanity that I was before treatment, I feel i’ve come a long way . … Best wishes to you . You know that you have somewhere to come now you have found PAS .
Thank you wedgewood! I am going to search posts here! Yes I have low stomach acid! Omg finally it all makes sense. I didn’t have any psychosis under suddenly at age 31 right when developed anemia. I keep saying “I can’t believe this” but I have to. It’s preposterous how the doctors totally dismiss this. I just kind of can’t process it. Seriously my future would have been life in the ward. No meds work except lithium and that’s only bc it helps b12 absorption I’m guessing. Ok so grateful for your posts! Thank you.
I feel so indebted to PAS. I have come to be totally convinced that my mother died a long and horrible death from untreated P,A. Now that I know so much more about it and it’s symptoms , by reading the posts on here . The books that Martyn Hooper , the founder of PAS has written , and my own experiences. It was your mentioning Lithium that sparked off thoughts of my mother, because that was one of the drugs she had to take , to no avail . She spent so much time in psychiatric care ,and latterly in a care home that specialised in dementia .
Omg! Yes I totally relate to her situation. My future was life in the ward. Long term untreated causes permanent psychiatric symptoms. I really saw no other future before. I’m not sure why the lithium helped me but it was probably just minimal. I’m so sorry about your mother! I literally just escaped the same fate. So scary and such a difficult diagnosis!!!
Everyone is so different . It could be that lithium helped you , but not my mother for a reason that we don’t understand . ,Yes ,it can be a difficult diagnosis, if you don’t test positive to the IFAB test . But it should not be beyond a doctor's wit and reason to diagnose it .. A course of B12 injections is so very very cheap , is totally harmless even if given to someone who doesn’t need them ( you cannot overdose on B12 ,(unlike some other vitamins and minerals . ) There are NO side effects at all ( unlike many prescription drugs !) There is nothing against giving a patient a trial of B12 injections .
That’s good you said that because I was a little worried about overdosing. I am going to give the shots a try. I have to research here about stopping suddenly though first. I tend to not stick to supplements. But with b12 I worry that stoping and starting can be dire in pa, in my situation, causing psychosis.
I was in a psychiatric ward for five months in 96 and 3 months in 97. I had low iron. Tingling in feet. Screaming turns. Blood work all wrong (I sent off for medical records). I am convinced it was PA and/or thyroid related. Didn't get treated with B12 till 2008 and then self-injecting as well from 2019 to try and heal neuropathy. Self treating for hypothyroidism from 2020, now under a private consultant. Many years of bad health, tiredness, feeling sick. Got told health anxiety in 2019. Doctors have a lot to answer for with regard to B12 and thyroid.
in reply to wedgewood
Like you wedgewood, If we only knew then what we know now, how it would of prevented such distress in watching helplessly while our mothers was subjected to a needless condition.
That is one thing I regret !
wedgewood in reply to
Absolutely Sallyanni . We are talking about a time when a solution to Pernicious Anaemia had been discovered —- B12 injections. my mother died 10 years ago , and had been failing for at least 20. Death took a long time . And the process was terrible . -
in reply to wedgewood
Mum on morphine drip into her chest for several months, eventually after about two months they decided to take it out and left her. She went cold turkey, and an emergency doctor came out and called her doctor a b....dy idiot, you can't do that and reported him. Went to see her doctor and was greeted by an arrogant dr. Who said it was my mothers fault! Say no more !
wedgewood in reply to
Awful for you to remember it all .We have too long given doctors too much power over us . It’s the arrogance that gets me too . I really found out about some doctors when i got PA . It really opened my eyes .
in reply to wedgewood
Nothing worse than proving a doctor wrong. !I gave up on my doctors and went private, MRI scan revealed all, I took this to A&E and he revealed the true state of my spine and numbness.
A few weeks later I let slip what I was told to my Doctor.... big mistake had the head of surgery on the phone out of hours laying into me.
I did report it, He took Sabbatical leave never to return.
in reply to Ecf123
Fobbed off ! Comes to mind .....
Oh wow. I did not realize pills were that ineffective! I’m scared. I’ve been researching and I can get the shot locally with her prescription so I think that will work. Omg I didn’t realize the shot is almost only thing that works. My iron is so low right now it’s critical so as soon as I get these dumb tests I’ll get the shot! Im going sat to get b12. Then if that is abnormal only then they test mma and if. So if they don’t test mma and if I have to do those myself through walk in lab. Can’t wait to get the shot!!! You’re right now that I think about it the pills definitely did not work. Oh gheez. Thank you so much. Lots to work on.
Please note that the doses used to treat a dietary deficiency will not help someone with an absorption problem. However, high dose (1000mcg+ ) taken daily can be an effective treatment for many people with absorption problems but it doesn't work for quite a significant number of people, and it will be very slow raising B12 levels if they are low.Nobody currently understands why they don't work for everyone.
Oooh ok. Thank you. It’s so strange because I use my emails to figure out when I was psychotic and what supplements I was on. I send lots of stupid emails out when I’m delusional for some reason. So I stared about 1000 mcg of b12 for several months in 2016(I saw I ordered it from Amazon repeatedly) and then I went delusional in may. It was right around when I stopped ordering the b12 so I was wondering if there is something where if you stop suddenly this can trigger symptoms. Or maybe it just didn’t work bc I have my iron levels in may and still very low. Thinking it might take years. Yeesh. Thank you
There isn't a direct link between supplement B12 and iron levels.PA can cause problems absorbing other minerals and vitamins - iron and folate are the most common but supplementing B12 isn't going to directly affect iron levels.
Gosh you must have had been low for some time, when did these issues start for you? Some great support on this group. Wishing you luck. P.s. I self inject now.
Ecf123 in reply to
I retained bloodwork from 2009 and my iron was 138 and then in 2010 it dropped suddenly and 30 and satiation in single digits. Hospitalized that year with headaches, palpitations, hair loss. I could not figure it out! So I was under a lot of stress and wondering if the autoimmune part of this just was triggered.
Gambit62Administrator
Pernicious anaemia is an auto-immune disorder which attacks the mechanism that allows you to absorb B12 leading to a B12 deficiency.The anaemia you have is caused by the B12 deficiency
These are the guidelines produced by the BCSH for cobalamin (B12) and folate disorders (B9)
onlinelibrary.wiley.com/doi...
they cover the need to treat promptly if there are neurological symptoms and also that symptoms are important in diagnosis even if B12 is in the normal range and take precedence over the test.
they also cover the problems with the IFAB test for diagnosing PA as a specific cause of a B12 deficiency.
Your GP may also find this area of the PAS website useful - it is aimed at helping medical professionals improve the diagnosis and treatment of PA (and other B12 absorption problems).
pernicious-anaemia-society....
Yes! Autoimmune! It’s an autoimmune anemia. Thank you. The link is most helpful. I have hashimotos so I’m somewhat familiar with autoimmunity. So I have to read about this though! Thank you. In autoimmunity something is attacked that shouldn’t be so wondering what that is in pernicious. I have so much to learn!
Hi Ecf123,
I hope you find info on here that will help you.
Do you mind me asking if you're in UK?
The reason I'm asking is that patterns of treatment for B12 deficiency and the type of B12 used in treatment can vary between countries.
Some links below may have details that could be upsetting.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Has some members in other countries.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Testing for PA
pernicious-anaemia-society....
B12 Deficiency Info website
B12 Awareness (US website)
Stichting B12 Tekort (Dutch website with English articles)
stichtingb12tekort.nl/weten...
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
UK treatment info in book is out of date.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
I am not medically trained.
I’m in the US! Please talk to me anyway! Lol. There is nooooo help here for this. I saw actually a decent gp in nyc for ten years during this and noooo clue my severely low iron had any connection to psychosis. Seriously no education or awareness about it here. I ordered Hoopers book on kindle! Thank goodness for that. Thank you. I will read those links too!!!
Hi, I'm a US based member here. I had to self diagnose my B12 issue. My doctor at the time of my diagnosis was a wonderful doctor and he immediately put me on loading doses of B12 but he didn't even think to check my B12 levels.
I suggest you shop around for a new GP. My current doctor has a practice that seems to lean towards older patients. He is very "Pro B12 Shots." I think because he sees so many elderly people he understands the damage low B12 can cause. So maybe start with doctors who tend to specialize in older patients. If you do find a doctor who will work with you on this issue, you can ask them for a prescription for B12 for self injection. I see my doctor every three weeks for a shot and he gives me a prescription for B12 ampules which I keep at home to give myself if I feel like I need a boost in-between office shots.
You're going to have to be your own advocate. Don't stop until you get the treatment you need. I had such intense anxiety it was almost unbearable. I know this is hard to believe, but immediately after my first B12 injection I felt a wave of calm wash over me. It was an incredible feeling. All of your symptoms won't be cured overnight and there will be many ups and downs during the first year or so, but keep getting B12 shots and you will feel so much better. Hang in there!
Didn’t realise that you were in USA ! I looked you up , and it was not stated . So telling you to look up guide-lines was no help to you , because I was referring to the guide lines here in U.K., which is where PAS is situated ( well it’s actually in Wales . ) I’m amazed that the USA hasn’t got a PAS , . Such a huge country with plenty of wealth . ….
Don’t get me wrong . We welcome US members ! We love to have you ! But of course we don’t know the medical situation there . We have our NHS , which I’m afraid is struggling in certain aspects .
Just found this!
perniciousanemia.org/b12/in... seems to be US but seriously nothing.
Stay with us ! We will help you any way we can . Also we have quite a few USA members now . So that can be helpful to you !
Films and videos about PA and B12 deficiency
Some of the stories in the films could be upsetting.
PAS conferences
pernicious-anaemia-society....
Films about b12 deficiency
B12 deficiency can have a huge impact on mental health
b12deficiency.info/mental-h...
stichtingb12tekort.nl/engli...
That’s great information, as is usual from you Sleepybunny ! 🐰( not so sleepy !)
I got both books but prefer videos so thank youuuuu! Yay
B12 deficiency from PA or other causes is often not well understood by doctors and other health professionals.
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Oh I figured out from one of your links what happened. I stopped taking deplin-prescription strength folate. That’s what kept me normal most likely. Ooooh. The whole time I thought it was Lamictal. No it was deplin because your article on mental health explains folate is precursor to b12b12deficiency.info/mental-h...
Omg mystery solved. Deplin. Argh.
Sigh it was only deplin that kept me normal for four years. Now it’s only lithium. I was psychotic for two years straight at one point. B12 pills did not work for me. Omg. I’ll try injections but I doubt it. I may actually have to go back on deplin as no knowing how long lithium will hold me. What a scary disease.
I tested positive for PA by intrinsic factor blocking antibody (IFAB) test on 2 different occasions, all done through LabCorp. I had macrocytic anemia, low iron, but a normal reticulyte level. I think the IFAB test is probably the best test to try to confirm PA, so long as the doctor understands that false negatives can be as high as 50%.
Ok I’m going Saturday to get all that done. But have a feeling will be normal. So I might be the 50%. Yes reticulyte also was normal which when coupled with severe low iron I read indicates bone marrow problems as a cause. I don’t know about the marrow so learning. New to this.
in reply to Ecf123
I can only tell you what tests I had done, and by no means no medic.Blood taken from wrist which showed Double Stranded DNA. Also bone marrow which indicated it was abnormal. Once in treatment this all reverted to normal !
Doctors and specialists tend to not explain/reveal alot
And I really didnt investigate things prior to tests, so I had no idea what to ask etc.
AT least you are so much more educated on the subject .
Ecf123 in reply to
How did you test bone marrow please? Was that a blood test?
in reply to Ecf123
No. Its not nice, they inject anasetic into the back (by the spine) wait until numb then a insert large needle into spine and then collect fluid which drips out through some gadget. You then have to lay down for an hour or so.
"I think the IFAB test is probably the best test to try to confirm PA, so long as the doctor understands that false negatives can be as high as 50%."
There are other tests that can help to diagnose PA but like you I think IFAB (Intrinsic factor Antibody test) is probably the most useful.
Testing for PA
pernicious-anaemia-society....
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
Gastrin test
labtestsonline.org.uk/tests...
I got the ifa and pca this morning. Was researching and it looks like autoimmune gastritis is what these tests show. That would explain the vomiting and bloating. Yeesh. Do people usually test h pylori as well? I bought the prima test for $18 this morning.
Having provided our close relative's doctors and psychiatrists with clear research evidence on the neurological/psychiatric effects of extreme B12 deficiency, our family (four now with B12 def.) still met with a brick wall, with drugs continued to be prescribed instead of regular and adequate parenteral vitamin B12.......
Although written principally for women, I'd recommend highly qualified US psychiatrist, Dr Kelly Brogan's, book, "A Mind of your Own", the only psychiatrist I've personally come across who has researched B12 and knows the effect that extreme B12 deficiency has on the brain and psyche: schizophrenia, hallucinations, paranoia, wanting to be alone, etc.
I personally found that my surgery eventually started to take me seriously after I wrote, quoting family history, enclosing link to BMJ research document below, and sending them Dr J. Chandy's book, "B12 Deficiency in Clinical Practice", freely available to read here on line, chapter by chapter:
Chapter 7 has information on adrenal fatigue, which appears to be connected to B12 deficiency and hair loss.
Many of us though have given up being at the mercy of GPs' unwillingness to treat adequately, especially at the moment, and self inject instead, thanks to willingness of German pharmacies to ship to the UK.
Best wishes for good treatment and better health soon Ecf123
.........................
BMJ research document (summary only), confirms that, although MMA is the best test, there is really NO reliable test and it is symptoms that are important, especially when they are neurological.
UKNEQAS guidelines point out that neurological symptoms should be treated with injections every other day until no further improvement to prevent further damage.
..........
Note: It will be difficult to prove B12 absorption if you have already been supplementing as this will skew the result, and IF test is only 40/50% reliable.
Tracey Witty's B12 website has further excellent research papers, films and advice on writing to your doctor b12deficiency.info/what-to-...
This last website has film about Sally Pacholok's experiences which caused her to write her well known book, now the 'go to bible on B12 deficiency' 🤗
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