So a long story I'll try to make short. My daughter had not been feeling well for quite some time. Eventually her WBC dropped critically low and landed in hospital for a week! Very low B12, folate, wbc. Was tested for every possible virus, cat scans, even a bone marrow biopsy. So far NO diagnosis. We are going nuts!!
They said the blood test for PA was neg but I have read many people can test negative when they still have it. Also they started her on b12 injections which have continued. Her wbc went up but since dropped again. Can this happen?
I am asking because she has had EVERY symptom and moreover her father has PA and i have read it can be inherited.
Tx for any input!!
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Serenity-Now
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It is a sad fact that B12 deficiency/ Pernicious Anaemia is very poorly understood by the medical Profession. That’s why the PAS was formed .
Yes it’s a known fact that about 50% of Pernicious Anaemia patients test negative to the Intrinsic Factor Antibodies test . This is acknowledged in the latest NICE guidelines to B12 treatment .
Yes it’s a well known fact that there is a genetic connection toP.A.
It is a well known fact that once treatment with B12 injections is commenced , the symptoms can get worse before they get better . It’s called ““reversing out “
Symptoms must be treated . B12 Tablets do not work for P.A, patients . The cost of all those scans , biopsies etc is enormous . The injections must continue . Most members on this forum have had terrible debilitating fights to get diagnosed , not always succeeding . We have mostly had to self inject to keep well . There are several books on the subject written by our founder Martyn Hooper . (Amazon)
I understand your outrage . There is one doctor in Cambridge who has a great understanding of this condition . I’ll send you that information.privately as we must mot mention names on the forum .
I’m a patient . So very sorry . As PAS is a U.K. founded Society , most members are in U.K. . I did look you up , and there was no mention of you being in USA ,so I wrongly assumed that you would be in U.K. " . I’m afraid that it’s Cambridge UK! So useless for you . What a shame . Maybe a compatriot of yours would be of more help , so I would put out another message mentioning that you are in USA in the heading .
A book for you to read about B12deficiency / Pernicious Anaemia would be “ Could it be B12 “ An Epidemic of Misdiagnoses by Sally Pacholok. ( Amazon ) It relates totally to the situation in USA. , written by a USA nurse and her doctor husband .
So sorry your Daughter is anything but thriving. I reside in the USA and PA is not on the radar of doctors, at all, in fact B12 isn't checked unless requested. The good news is you can order your own labs if your MD isn't checking all avenues. Prefacing with - to add comfort to you in knowing I have experience - I have PA and went a long time without knowing. Daughter of a Dutch Mother and Grandmother from Holland. Both had B12 deficiency. In the USA I had to self-diagnose and also ask for self injections. Happy to share symptoms if it helps. Most important right now is two critical labs for your Daughter: MMA (methylomanic acid) and Homocysteine. You can order from Ulta Labs online and not terribly expensive. The results will point out if she needs more B12 or folate or both. It is possible as she increases her B12 you need to add folate. Both work together, and low folate can cause a reduction in WBC. Get these done ASAP and come back here with what you learn. Here to help and can provide guidance to navigate USA-based system to get her what she needs. Not a doctor but worked in the medical arena for entire career (clinical research).
Hi, I am a US daughter of a Dutch father and mother and also was diagnosed with PA. I suspect my intestinal surgery as a toddler may have something to do with it. However, I remember a lot of liver being prepared in our home when growing up, (still a yuck, no for me. ) A very intelligent internist had me do a Schillings Test 30 years ago and that is how it was diagnosed. Since then, I have had to advocate for myself continuously and now hand my Dr my request for prescribed hydroxocobalamin vials. I had to wait 9 months for the first one to be filled (out of stock in US) and I must pay cash for it and the needles as it is not covered by insurance. Sally Pacholok recommends this form of B-12 and I must say, having tried it all, it is the best. It is weird to see the Ozempic craze and how it is so available and yet life saving B-12 injections are treated as a lark and cyanocobalamin is the preferred synthetic offering with a cyanide molecule that the body must remove. I started with this and over the decade I was on it, I developed neuropathy and tingling and electric shocks. Hope your daughter gets answers!
What a small world! I was diagnosed with anemia - not sure if iron or B12 - when I was 4 years old. We were living in Spain (Foreign Service) at the time and I remember liver and onions as well. It is my belief my Mom was not aware of PA at the time, nor of a familial link. Fast forward when I was in my early 50's and I hit rock bottom from PA although had no idea that was the culprit at the time: tinnitus, cervical spondylitis, extreme urinary incontinence, balance issues, brain fog, oscillopsia. Doctors all said, "It's just menopause." It took recollecting my Oma had required bi-weekly B12 injections when she visited us years ago. She has since passed although one of my older brothers remembered her doing this to validate my suspicion. My Mom passed at a too young age from dementia and I could never understand why. She was so vibrant. In hindsight I firmly believe she was misdiagnosed with stroke-related dementia and actually had severe PA. She fell all the time along with severe incontinence. It saddens me, at least in the USA, there is such a lack of PA awareness. She could be alive today. I only wish I was older and wiser and knew of PA when I was caring for her. QUESTION: Where did your MD find hydroxocobalamin in the USA (how prescribed)? I don't mind paying as right now I need to self-inject every week. Would love a more durable option and also want to mitigate possible risks of cyano although doing well so far. 100% agree re: oh-oh-oh Ozempic. Tot Ziens
I will add a picture - the NDC # can be entered by the pharmacist you use to determine whether it is in stock in their warehouse and they can order it with a prescription from your doctor.
Just thought I'd chip in. Even the founder of PA tested negative twice before he got a positive IFAB test. As Wedgewood says, it is an unreliable tool. The doctors don't seem to want to act, even according to NICE guidelines; the level of obstinacy mystifies me. I believe only about 20% of those suffering from B12 issues test undeniably positive for Classic Pernicious anaemia. Many simply fall into the category of a Functional B12 deficiency, but that doesn't make the need for treatment any less urgent. Any symptoms of neuropathy need to be addressed promptly while there is a good prospect of them being reversed.
My tests were all over the place because, for years before I became aware of the B12 issue, I was supplementing with a B complex product. This, of course, was not being absorbed but gave me massively high levels in tests. I was, as far as I was told, suffering from ME - but whether that was ever the case is debatable. It was probably B12D all along. The one thing which clarified the matter for me was a homocysteine test which I had done privately. If B12 is low then homocysteine will be high - and can have damaging effects. This test has to be done in facilities that can process the sample swiftly, as it needs to be a very fresh blood draw. I had mine done by One Day Tests, who have branches in a number of places. I took the report with me to my appointment with the doctor that Wedgwood recommends. He is lovely - a good listener and very knowledgable. He operates privately but, considering the cost of the various tests, treatments and diagnostic equipment I had bought in the past to address my various symptoms (having despaired of my GP), it was really very reasonable. As soon as I showed him the homocysteine result he said that was emphatic evidence that my quite severe symptoms were due to a B12 deficiency and that we should proceed to treatment with injections, as quite clearly any other sort of supplementation was going to be ineffective. It is early days for me - I have just started the loading process - but, having had his very patient tuition, I am finding self-injecting no trouble at all.
The fluctuating wbc is not something I would know anything about, but I'm sure he would be able to advise. He was kind enough to chat to me on the phone beforehand, and asked for copies of any tests to be emailed, before we actually met.
I've actually written down;"The level of obstinacy mystifies me"
So accurate .
With I'd thought of putting it ljje that in my recent 'roubd' getting my b12 prescription reinstated .
I'm also self injecting but with an NHS prescription.
The way forward I believe.
It felt like a battle if wills rather than trying to highlight the need for continuing treatment .
I'm also mystified why so much effort and money is spent to stop b12 Injections.
Nurses have really suprised me over 6 years . In my case the majority women, thinking I don't really need b12. Even going behind my back to a doctor saying as much.
Same to my 95 year old mother doing a sneaky blood test that shd apparently agreed to.
She's deaf and had no idea what it was for .
I was furious.
That backfired as her B12 was low on 12 weekly injections so G.p didn't stop them. Had the sense to ring me and now are 8 weekly !
Nurses have even stated I'm lucky !
How they think that is beyond me.
Fibromyalgia and ME were the description of symptoms of severe B12 deficiency for my daughter.
So removed from her notes .
One you get 'labels ' they treat symptoms not the cause and testing stops.
It took a neurologist to have b12 deficiency himself to recognise how severe the symotons can be .
Also to recognises he needed more injections than the UK guidance .
He read every paper there is .
I saw him for migraines .
It should not be by chance you come across a consultant with knowledge.
I'd seen 4 neurologists.
One scared me saying I was addicted to B12 and it would cause harm!
It's very difficult being an advocate for your daughter.
We are led to believe doctor knows best.
Daughters can be embarrassed ( depending on age ) by proactive determined mothers if nothing much happening to help.
Mothers often do know best !
Such a job if done well !
I hope you get answers and your daughter gets well.
Grouping together a common set of symptoms under the heading "syndrome" is not in itself a conclusive diagnosis. Having a belief that these symptoms are interrelated should be the start of an investigation, not the end of one. It is the disease itself that needs identifying :
syndrome: n.1 a group of concurrent symptoms of a disease. 2 a characteristic combination of opinions, behaviour, etc
... so perhaps "syndrome" in it's 2nd interpretation - that of a commonality of opinion /behaviour - more accurately describes what is going on when the delving stops at this point !
so sorry to hear. Did she just do the intrinsic factor test or did they also test for anti-parietal cell antibodies ? Because from what I’ve read you can test negative for IF but positive for PC and get your diagnosis that way.
If only there was a specific and sensitive test for PA, but there isn't.
IFAb tests are positive in around 50% of PA cases. When it's positive, it's PA. When it isn't, it might still be PA. False IFAb positive results [probably] aren't seen.
Parietal Cell antibodies are positive in [probably] over 90% of PA cases, so it's very sensitive, but unfortunately, it's found in a range of other conditions, so it's not specific. That's why it requires a clued-up doctor to interpret all of the results and arrive at a diagnosis. That's easier said than done!
I mentioned some other tests that might help to diagnose PA in thread below eg gastrin, pepsinogen, indirect bilirubin levels and serum lactate dehydrogenase.
Is she still in hospital? Folate, B6, copper and zinc are all co-factors with B12 for white blood cell production. Is she getting enough of those as supplements, or in her diet? Plenty of good grass fed meat, wild oily fish and organic eggs, with organic green leafy vegetables and walnuts and almonds. Blood tests are variable, plus assuming it is Pernicious Anemia, now her body has some B12 going in, all sorts of bodily functions will be waking up to use it and the necessary co-factors. So, yes, her white blood count could drop again. She may have levels of infection her body is now able to fight.
Monthly certainly isn't enough for me. I recommend Igennus supplement products online. They make sure they are supplying the most easily absorbed forms of vitamins and minerals. Worth a look.
White blood cell count is made by the bone marrow, which the count is eventually replenished every three months or so.
You must inject B12 on a regular basis before your bone marrow counts increase. In the meantime, wbc counts will fluctuate before stabilising.
A great doctor once told me this a long time ago, hence why six monthly tests are recommended.
Correct supplementation of all the B vitamins, iron stores (ferritin), omega’s etc are also important if dietary intake is insufficient, and if neuropathy is also present.
Give the body all the correct nutrients/supplements and retest every six months.
Much time is required to reverse the insufficiencies so, your daughter may feel worse before she feels better.
Since her father has PA and a strong genetic connection exists, don’t delay her of B12 treatment.
In my experience, it took me three years to reverse the damage caused by the insufficiency of B12.
Don’t wait for doctors to give her the go ahead, many lack the knowledge of the importance of B12.
The body does not overdose on B12 either, it’s flushed out by the body quickly.
Much advice is provided on this forum as everyone has been in a similar position as your daughter so, stay positive and proactive with your health, best of luck with your daughter’s healing process.
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