Help understanding my latest blood tests

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jimmylegs
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Re: Help understanding my latest blood tests

Post by jimmylegs » Sat May 05, 2018 7:42 pm

EXACTLY, NHE - i've been over this a thousand times if i've been over it once.

as i said above, 200 is bottom end of a crap reference range.
as lisa said above, lab is using 200-900 (ie normal range, still crap).
as stated above, doc is accepting crap broken normal range when he decides 345 is acceptable.
NOT ACCEPTABLE!

200 is a cutoff based on hematological criteria only.
this is the point at which blood cells start to change visibly and measurably - values like MCV (mean corpuscular volume) are abnormally high at b12 levels this low.

on the way down to 200, there is a suite of neurological deficits that are not measured well in a clinical setting. docs don't usually have much to offer re these 'subclinical' issues.
you brush off these lower normal b12 levels (and associated subclinical problems) like the doc does, at your peril.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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NHE
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Re: Help understanding my latest blood tests

Post by NHE » Sun May 06, 2018 1:38 am

Sally Pacholok writes in 'Could It Be B12? An Epidemic of Misdiagnoses' that the central nervous system can become deficient in B12 when serum levels fall below 500 pg/mL.

http://b12awareness.org/could-it-be-b12 ... a-release/

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jimmylegs
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Re: Help understanding my latest blood tests

Post by jimmylegs » Sun May 06, 2018 3:15 am

i have never checked out the ebook, but have been zeroed in on 500 for over a decade http://www.thisisms.com/forum/regimens- ... tml#p16642

can't readily pull up the paper that originally pointed me in that direction back in 06, but i think it's one i had trouble accessing even with full text journal access, and had to request a print copy. if so it will be in my files somewhere. if memory serves (ha!) it was something to do with cognition in the elderly and it made reference to other parts of the world with ranges starting at 500.

i have more recently found it challenging to justify the 500 target with good evidence from studies evaluating serum b12 in healthy controls. havent had time to dig right in.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

LisaH
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Re: Help understanding my latest blood tests

Post by LisaH » Mon May 07, 2018 6:57 am

Three of the "specialists" that I am seeing are in different cities but part of the same huge world-renowned hospital. All three seem dismissive about symptoms as well as test results so I don't hold out much hope at this point that they'll solve my medical mystery. My B12 result is obviously on the low side but is at least within the accepted range here in the US. This latest neurologist ordered a sed rate (ESR) test on 3/19 which seemed "normal" at first glance. I looked closer and noticed that the standard range given is 0-30 mm/hr. That range is for women over 50. I'm only 47. According to my research, women under 50 should have an ESR <20 and mine came back as 22. That, to me, means it's elevated. I sent an email to the PA who immediately dismissed it as meaning nothing. What is the point in ordering tests if a result outside of the range isn't taken seriously? Also.. my lymphocytes have been flagged as LOW on the two different CBC blood tests I've had done. The first was over a decade ago when I had a paralysis "spell" in college and was taken to the ER. The other was last year when my first neurologist ordered a CBC. My absolute lymphocyte count meets the criteria for lymphopenia which definitely means something. I have sent an email to my latest neurologist but expect to get the same response as I did from the PA about the elevated ESR. It will undoubtedly be dismissed as nothing and I'll be no closer to finding out what's wrong with me.

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jimmylegs
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Re: Help understanding my latest blood tests

Post by jimmylegs » Mon May 07, 2018 2:05 pm

zinc is low in ms too, and correlates to lymphopenia.

The Dynamic Link between the Integrity of the Immune System and Zinc Status
https://academic.oup.com/jn/article/130/5/1399S/4686392
"Collectively, the data clearly demonstrate that immune integrity is tightly linked to zinc status. Lymphopenia and thymic atrophy, which were the early hallmarks of zinc deficiency, are now known to be due to high losses of precursor T and B cells in the bone marrow. This ultimately leads to lymphopenia or a failure to replenish the lymphocytic system."

how much you wanna bet the 'normal' range for serum zinc includes levels that correlate to lymphopenia?

a proactive approach will require the abandonment of the clinical disease management paradigm and the adoption of a health promotion approach.

maintaining a 'normal' suboptimal status quo until the wheels fall off to a 'clinical' degree, activating standard disease management action, is everyone's prerogative- but it's neither efficient nor sustainable imho.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

LisaH
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Re: Help understanding my latest blood tests

Post by LisaH » Tue May 08, 2018 5:47 am

No reply (yet?) from the latest neurologist. The patient portal shows when a message has been read and he normally replies right away. He read my message early yesterday morning. I'd like to pretend that he took the lymphopenia and elevated ESR seriously enough that he's looking into possible causes before replying... but that's not very likely. If I were the doctor, my next step would be to order another CBC to find out if the lymphocytes are still low.

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jimmylegs
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Re: Help understanding my latest blood tests

Post by jimmylegs » Tue May 08, 2018 10:04 am

good luck with the process. if you decide to ask your doc to provide referral to a dietitian, you may at some point gain access to some less frustrating and more useful/actionable insights.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

LisaH
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Re: Help understanding my latest blood tests

Post by LisaH » Tue May 08, 2018 11:42 am

At this point, I wouldn't ask any of these doctors for a referral. I'd be better off having my GP refer me. This latest neurologist replied to my email but chose to completely ignore the part about my low lymphocytes on two CBC blood tests. He said this about my sed rate: "Disease processes that go with a high sed rate see it over 70-80". By that logic, there's tons of wiggle room outside of the accepted normal ranges for everything, so... tests are essentially pointless. 8O

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jimmylegs
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Re: Help understanding my latest blood tests

Post by jimmylegs » Tue May 08, 2018 12:42 pm

classic disease management attitude - wait til it gets *really* bad, then call me back
whoever you ask, if you have success accessing a dietitian i bet you get marching orders, not deflections

tests are not pointless. some ranges are poorly defined, different labs use different setpoints, and doc's results interpretations are not necessarily on point - especially when you are after 'optimal' and not 'normal'. recall normal is just the bell curve, from einstein to gump inclusive.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

LisaH
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Posts: 116
Joined: Tue May 09, 2017 3:05 pm

Re: Help understanding my latest blood tests

Post by LisaH » Tue May 08, 2018 8:43 pm

The notes from my first visit with this neurologist included this: "There may not be a big "Ah Ha!" answer right now, and something may be a lot clearer down the road". He said to me at the appointment that one of three things will happen. One, I'll either get better and there'll be nothing to figure out. Two, I'll stay the same and my symptoms will be managed, and three, I'll get worse and there'll be more clues to help figure out what's wrong with me. He loaded my latest MRI and told me the new parietal lesion found enhances and could be scarring or a possible bleed. In a later email, he said: "Lots of people have white matter spots. It's not too specific. We'll repeat an MRI at some point and see what's happened with it". He dismissed an elevated sed rate and won't even acknowledge the lymphopenia. I was told that the lab (after 45 days) faxed him a paper copy of my "normal" results. All of my test results have shown up on my patient portal, even send-outs, so I called the main neurology office yesterday about it. The lady I spoke with found it odd that they aren't on my portal. I told her that I want a copy of the "paper copy" sent to me. She sent a request to the neurologist's nurse so we'll see if I get it. I'll be pestering until I get it because I keep copies of my medical records, MRIs, etc and that one is missing. :?

LisaH
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Re: Help understanding my latest blood tests

Post by LisaH » Fri May 11, 2018 8:47 pm

I finally got a reply to my last message to the neurologist. First, let me say that on my first visit to this guy, he pointed to the parietal lesion on my MRI that was loaded on his computer. He told me that it enhances, could be scarring or possibly bleeding, and that it could be causing my gait symptoms. Now... in this email reply, he finally addressed the low lymphocytes and parietal lesion with this: "We'll keep an eye on both, though I don't think either is a cause of your symptoms - they appear to be just incidental findings. From everything I've read, it always means something if your lymphocytes are low. Can someone here please tell me if low lymphocytes is ever considered incidental? I'm so disappointed with this neurologist. He contradicted himself and is dismissing things that, in my opinion, could be clues to what's wrong with me.

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