Ideas on improving rates of missed/delayed diagnoses in PCP type visits/Pernicious Anemia

Janel Hopper janelhopper at COMCAST.NET
Tue Jan 7 23:23:04 UTC 2014


Dear Bob,

Thank you for your interest. This is a worldwide problem, and the pernicious anemia/B-12 newsgroup now has over a thousand members with many people trying to work this out for themselves.

I can point you to many articles about numerous problems with B-12 testing. Shockingly, alternative tests (transcobalamin) that detect active B-12 have been available since the 1970s. 

These links captures some of articles:

http://www.ncbi.nlm.nih.gov/pubmed/?term=problem+b-12+testing
http://www.ncbi.nlm.nih.gov/pubmed/?term=Carmel+b-12+testing
http://www.ncbi.nlm.nih.gov/pubmed/23423840
http://www.ncbi.nlm.nih.gov/pubmed/22551146
http://www.ncbi.nlm.nih.gov/pubmed/?term=green+ralph+b12
http://www.ncbi.nlm.nih.gov/pubmed/10977010

I can also point you to numerous articles by hematologists that pernicious anemia can present without overt anemia. A major befuddlement is caused when low iron that results from malabsorption keeps the blood cells appearing normal in size to the computers.

http://www.ncbi.nlm.nih.gov/pubmed?term=(pernicious%20anemia)%20AND%20overt%20anemia
http://www.ncbi.nlm.nih.gov/pubmed/?term=neuropsychiatric+pernicious+anemia
http://www.ncbi.nlm.nih.gov/pubmed/?term=neuropsychiatric++anemia+stabler
http://www.ncbi.nlm.nih.gov/pubmed/15517957
http://www.ncbi.nlm.nih.gov/pubmed/2339679

Neuropsychiatric disorders caused by cobalamin deficiency in the absence of anemia or macrocytosis.
Lindenbaum J, Healton EB, Savage DG, Brust JC, Garrett TJ, Podell ER, Marcell PD, Stabler SP, Allen RH.
N Engl J Med. 1988 Jun 30;318(26):1720-8.
PMID: 3374544 [PubMed - indexed for MEDLINE]
Related citations

I also have many articles that aren't fully accessible online. A great deal of former knowledge has been lost in today's medical education on this particular topic, and I would like to see it resurrected.

I previously  proposed to the group that since pernicious anemia is an autoimmune disease with known overlap with thyroiditis and other autoimmunes, a deliberate search for it in patients without an additional lab diagnosis justifying their symptoms (apart from the treated Hashimotos, e.g.) would be helpful. As I mentioned, the CEO of Isobel ran my symptom history and identified B-12 deficiency as one of the options from symptoms that went back to my 20s. I was diagnosed at age 56 when I asked for the IF blocking antibody test which was positive, as were parietal cell antibodies and elevated MMA and homocysteine. I had seen a total of about 70 doctors. I continue to be mocked by the medical system as I try to attend to my gastroenterological and neurological difficulties. In spite of a bonafide diagnosis confirmed by multiple hematologists, most doctors simply can't get their head around pernicious anemia without anemia. You're right. It needs new language. Even when the patient identifies the problem (which is shockingly a common scenario according to Martyn Hooper, head of the Pernicious Anemia Society), most struggle to obtain adequate treatment even though this is the cheapest of deadly disorders to treat.

Please feel free to give me a call or email your needs for next steps. I am no means an expert on the problem having worked it out for myself just recently, but I also copy Martyn Hooper in the U.K. who has now written two books and founded a non-profit to help these people. There are additional lieutenants on our newsgroup that know a tremendous amount, one of who (Andrea MacArthur) diagnosed herself after a 13-year ordeal.
http://www.dailymail.co.uk/health/article-1197979/Heartburn-pills-wrecked-life-How-antacids-effects.html

Janel Hopper
Menlo Park, CA
650-561-3573


On Jan 7, 2014, at 1:27 PM, Swerlick, Robert A wrote:

> Janel,
> 
> One of the concurrent sessions planned for the coming year's meeting will focus on misunderstanding of diagnostic testing. I am looking for real world examples of where diagnostic tests have limits which are not understood by physicians. This might be a good example. Can you provide me with additional details?
> 
> I also want to point out that this may be the case where language lets us down as well. You report that you have PA but no anemia? While I don't know the details of your history it is difficult to label a patient as anemic who is not anemic.
> 
> Bob
> 
> Robert A. Swerlick MD
> 
> -----Original Message-----
> From: Janel Hopper [mailto:janelhopper at COMCAST.NET]
> Sent: Monday, January 06, 2014 9:33 PM
> To: IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG
> Subject: Re: [IMPROVEDX] Ideas on improving rates of missed/delayed diagnoses in PCP type visits.
> 
> Hi All,
> 
> Some might recall that after great delay, I was diagnosed with pernicious anemia. I think that a lot of what passes for diagnosis is BS. 5 hematologists at major institutions now confirm my pernicious anemia. But some clinicians can't get their head around it since I wasn't often overtly anemic. Members of a major clinic might have trouble admitting they were wrong. Easier to call the patient crazy and slap on DXes with no laboratory verification. Physicians SAY they are going to work with patients who do some of the diagnosis lifting somehow through the Internet. My experience is that this is the very rare physician.
> 
> They insist on b12 levels and are wholly uninformed about the inaccuracies of these tests.
> 
> Rather than hypothesize about misdiagnosis in the abstract, I challenge any of you to do a post mortem of my 35 year saga. I'm sure other members of the Pernicious Anemia Society would also offer up their records.
> 
> A retrospective Isobel analysis detected my problem by my 20s.
> 
> But the physicians were (and many still are) only willing to consider the case through their limited misunderstanding--such as that overt anemia must always be present with pernicious anemia. Why check the literature since when one is highly confident?
> 
> Please feel free to contact me if you are interested in my challenge or more details.
> 
> Janel
> 
> Sent from my iPhone
> 
>> On Jan 6, 2014, at 10:50 AM, Vic Nicholls <nichollsvi2 at GMAIL.COM> wrote:
>> 
>> Would a change in medical education to include more EBM, reference
>> clinical tools such as Isobel or UpToDate/ClinicalKey/MDConsult, help with less missed/erroneous diagnoses? Would another method of gathering data from a patient help, in terms of more effective H&P? Would more emphasis on a physical exam vs. tests help?
>> 
>> How about a change in testing and what is tested? I know there have been articles out regarding radiology exams, that they appear to focus more on physics and other aspects not related to patient care type issues.
>> 
>> Would an emphasis on understanding lab work help? I know I've been able to figure things out by understanding what a test is and what it is looking for.
>> 
>> Have doctors ever considered whether patient education would help? If I have a few educated patients, would I be willing to allow them to be more participatory than others? What is the attitude towards medical research brought by a patient?
>> 
>> Victoria
>> 
>> 
>> 
>> 
>> 
>> 
>> Moderator: Lorri Zipperer Lorri at ZPM1.com, Communication co-chair,
>> Society for Improving Diagnosis in Medicine
>> 
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> 
> 
> 
> 
> 
> Moderator: Lorri Zipperer Lorri at ZPM1.com, Communication co-chair, Society for Improving Diagnosis in Medicine
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