So after my ER visit I realized that had actually been considerate enough to print my labs. The doctor who saw me said my labs looked "good" and nothing to note. Now, when I took a look, the lab had flagged the CBC and the Metabolic. I went through it and there were five results that were not only abnormal in general, but abnormal for me overall.
Like many people I track all of my bloodwork because none of my doctor's share the same system. So I carry around this ridiculous binder for them! However, it's been good because I have learned to read basic labs and have caught significant problems when my doctors have dismissed results, scanned them too quickly or didn't do a historical comparison. In one case I was - quite literally - about 6 days away from dying. They all said a humble "sorry" when I brought it up, but it taught me the lesson I knew: always know your labs and what YOUR normal is.
In this case, I have gone anemic across the board. As in every test. Also, I had a 45% rapid onset decrease in my Mean Platelet Volume while my Platelet Count remained steady.
Here's where I just have to laugh: one doc wrote me to say that these tests are the same thing and the drop is clinically insignificant. One told me to eat lots of fruit. I'm allergic to most fruits and he knows this!!! The other one is radio silent and still waiting on my PCP.
Here's the deal. They made Mean Platelet Volume a standard part of a CBC test because it in and of itself has meaning and needs to be monitored. What's more is that the ratio between MPV and Platelet Count means different things are happening in the body.
I read a great article, which I will link to below, that explains it. But, long story short all of them are wrong! My Platelet Count steady with a big, sudden drop of my MPV is indicative of a number of things, but importantly for me (and us!) as a Lupie: kidney function, increased activity of Lupus whereby the bone marrow cells are being attacked and killed (thrombocytopenia) and severe anemia (which could be due to the lupus or in addition to. probably because as I never was anemic until all this business started).
Lots of other things too depending on the relationship of the two blood workups, but I am SHOCKED at the kicking of the can, mtelling me to eat food that will kill me as it's in my chart under Allergies and the crickets.
So, I have to ask: how do we all feel when it comes to doctors reading BASIC bloodwork? Do you feel they are up-to-date and staying current?
Also: if you track your blood work how do you do it? I just have a folder but was wondering if there was a better way.
-kp
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katidid
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I would think that there are apps that would chart these results very efficiently. Or screen shots?
I'm well used to being the expert of me these days so I'm quick to notice trends in my blood tests. My .GP insists on personally monitoring mine so I get excellent continuity and understanding. Everyone needs a GP like mine!
During my 40 years in the Diagnostic Wilderness medics ALL missed significant trends - even in ultra basic blood test results (eg persistent lymphopenia) AND missed other ultra basic serious stuff (eg complex recurring persistence pattern multisystem infections & antibiotic resistance)....and meanwhile they mistook other types of important stuff for ages (eg a chondrosarcoma they thought was OA for 14 flippin years)..and, getting back to blood counts, even when my infant onset lupus was finally rediagnosed they ALMOST missed more specialist stuff (eg my history of below range immunoglobulin G, A & M blood test results - which has been key to BOTH diagnosing my antibody deficiency disease PID & understanding my AID seronegativity)
HURRAH, 😅😅😅😅 at 65 all that’s behind me now: my overlapping immune dysfunction + connective tissue disorders primaries + secondaries are convincingly diagnosed, so my combined treatments are helping a lot...but that can’t undo how far the multisystem debilitation had progressed before hand...and it can’t stop that suff progressing...well, at least mostly the progression seems to now be relatively slowed down!
AND, like yours, my medics still do miss stuff (eg increased neutrophils indicating another persistent infection...also other stuff like a big toe with a rare type of fracture they thought was gout etc etc)....
One BIG thing re blood count records for me is that my Immunology chief signed me up to our univ. hosp’s Patient Portal Pilot so i can now SEE many of the records held ‘live’, and message medics etc...but it’s only a Pilot, so not fully functional...and seeing blood test results there is all very well, but i need to actually cross ref them myself to check for trends my medics may be too distracted to spot
So, you’re becoming your own GP fits me too...and i think many here feel this way...AND my GP ACTUALLY TELLS me she is GRATEFUL 🤷🏼♀️...for 8 years now i have been making a point of keeping ALL my reports, results, treatment plans etc etc filed at home so i monitor & coordinate everything....plus am taking my results to consultations including new referrals...so i can try my best to be my own patient advocate...and help medics help me..l.which is relatively do-able when i’m reasonably “functional” but OMG is it tough when am flaring or whatever
💐💐💐💐 thanks for posting, katidid...am sure this will be a wonderful discussion...sorry for banging on about my version of this...you got me going 😆😆😆😆
🍀😘🍀😘 Coco
PS i’ve tried keeping my stuff on apps, but failed...am just not good at tech 🤷🏼♀️
Coco, raised neutrophils? My rheumy interprets any rare incidences of this as an indication of effective and appropriate treatment and gives himself a little pat on the back. Ahem . . . 😖 There’s no ‘despairing’ emoji. Xx
My immunology chief says treating complex cases like ours is as much an art as a science 🤷🏼♀️ The same manifestation can be interpreted several ways...the trick is to figure out the RIGHT way for THAT person 😘🍀
Precisely. My rheumy nurse ‘gets’ it entirely but she is the only one. My wbc hasn’t been above 5 since 2006 when I was hospitalised with post partum sepsis. It managed to raise to 9 (still normal range) I was on so much IV clindamycin that Derriford Hospital couldn’t meet the demand and had to draw on the stocks in neighbouring counties!!
science has a lonnnng way to go in understanding all this... canny medics like your nurse are relative rarities...as are we, BUT our numbers are increasing as is public awareness, so there’s more pressure on science to figure this out...meanwhile am bent on staying positive...
Wow! Same here, my WBC is always between 3-4. That’s my normal. I got really sick this summer, and if I hadn’t looked at the blood work and say that my WBC went up to 9 my doctors would have missed my infection - C Diff - and continued to call it a “flare”. My colon was tearing and shedding. It wasn’t a flare, I was dying. Not exaggerating. I think doctors need to stop thinking generally and start thinking relatively. But ... that would literally mean reeducating them. Sigh 😔
That's what happened to me. My eight year average WBC is about 4. I got a result back with a 9.5. I was having major gastro issues, like serious serious. But I was told by my Rheumy it was a "flare". As I mentioned in another post, if I hadn't caught the WBC level and told my Gastro about it I would be dead. It was C Diff in the last stage. Yet, when my liver enzymes doubled - mine are really low to begin with - once and went down almost immediately, my Rheumy freaked. I'm pretty fluent in the liver, and those were't numbers to be overly concerned about. However a deadly infection like C. Diff ... yea, that's something you don't miss. Also, I took a look yesterday at my WBC's over time. Looks like he missed the infection for 3 months. It had been steadily increasing that entire time. He knows I have leukopenia so why on earth that didn't give him pause, I don't know. I've officially decided to stop seeing him and go with another doctor that uses digital records. Watching my current guy go through piles of paper is painful and there is no way his brain can cross compare so many number over years. Sorry, immune medicine is just to finicky for that.
❤️❤️❤️ thanks for your reply! The more stories I hear the more it underscores the problem. They run all these tests but have no complete picture. You and I and everyone else shouldn’t have to be the hall monitors of this info. Especially in our cases when results that indicate a life threatening or permanently damaging data point gets missed.
I've only just started to get some of my blood results online and straight away I noticed my iron levels were really low. I don't know how long they had been this bad but neither of my consultants or GP called me in to get iron tablets so how low would they have gone before anyone noticed? i'm now getting printouts from GP practice for all blood tests wherever they are done so I can keep an eye out myself.
I did a spreadsheet of my bloods yesterday. I'm anemic. For three years! They numbers are right there, flagged by the lab year after year. And, nobody said a thing. UUUUGGGHHHH!
I have now found the best-for-me GP in my practice and saw her yesterday about the blood tests the nurse had previously said weren't needed, then decided to take them as I began to leave the room. Needless to say I had a recall for more tests after the ones “nurse?” had taken.
After months of dangerously low potassium levels, I now have a sudden drop in Haemoglobin, red blood cells and haemocrit. The next test is a repeat plus haematinics. She explained that it wasn’t so much that I had this apparent anaemia but they needed to investigate the reasons it has happened so quickly one of which can be related to the auto immunity.
Not so sure why my urine sample from the Rheumy clinic was high in protein and creatinine “ but this is to be expected”
All of them ignore my high results of Neutrophils, HB, MCHC, MCH and CRP, either that or can't be bothered to tell me why. Instead all I'm told is my bloods are normal so why do they have a range and if you're over or under that range ignore it.
Like you I keep a record to. I am totally 'anal' about it. Guess it comes from being a scientist. I have spreadsheets and graphs etc.
There has only been one time that there has been a slight screw up by the GP, but that is down to my doc being on hols and another GP giving me my results.
I agree with the NHS when they say "where possible try to see your doctor"
Hi Katidid. I also have a binder of results from bloodwork to MRI's CAT scans, endoscopies etc. I've found this really helpful if I need to go to the ER and if switching health carriers or doctors. I don't want to repeat tests and some don't believe me. Keep up your folder, it's an excellent idea and may save you a lot of grief someday. I also have found many blood tests that are overlooked and at dangerous levels. Who knows our bodies as well as we do? Us.
I too have a binder file for most of my blood results although I can’t wait until they become available to me online as asking is embarrassing sometimes. The hospital ones come via my rheum letters and the last hospital had them set out in a row like a graph so you could see the changes and get a good personal baseline.
I just looked at mine the other day to try and see if AMA antibodies for bronchiastasis has been done. Couldn’t find these but noticed my C3 is very high - I know the rheum expected it to be low with Sjögren’s but mine is usually elevated - this time soaring. Also IgG and IgA, PV and CRP all high but I guess this is just active Sjögren’s as I’m untreated.
Ok - so question for you all. I used to work in tech until about 9 months ago when my doctors told me I HAD to chill for awhile. Too much stress, too much travel and horrible sleep schedules.
I digress ...
My experience is with app and web design and development. My peers and I have brought up the issue of tracking tests. I’ve held back because the technology is difficult and labs vary. However, we were looking at it from an “all diseases” perspective.
Question: if a Lupus / MCD specific app or website existed to track your tests and flag changes, send alerts to your doctor, etc. would you use it? An early version would require you to input the results, but eventually we could make the system “intelligent” and it could take on some of the workload.
No! Tests have to be interpreted in the context of the patient’s entire condition. The labs red flag abnormal results, and then it is up to the doctor to determine the meaning. Doctors do not just look at the “normal” reading. In fact, that is the judgement that makes a doctor a doctor. Otherwise, we may as well be monitoring our own diseases. I am sure many people will disagree with me, but if you do not have confidence that your doctor can interpret lab results, it may be best to change doctors.
I think what most of us are saying is that doctors of all types are missing things and there is variability amongst them regarding interpretation. This leads to the problem of patients having to alert doctors when it should be the other way around. The second issue is carrying around piles of paper and binders. Is there an easier way to manage records when the doctors use different systems and lab providers. This is a HUGE issue in the US. Labs are big business and there is zero standardization. So, to your point of finding new doctors that’s not going to solve anything. This really is an issue of outdated thinking, differences of doc vs doc opinion, loyalty to 3rd party lab providers and physicians inexperienced in reading labs belonging to AI patients. And, experienced Rheumatologists missing critical info AND docs in the same field contradicting each other. At the end of the day, we as patients do have to understand our records. It’s an issue of safety.
But labs already flag abnormal results. So I am wondering why a specialist would need to be reminded by a patient to look at the result. If you have a question about an abnormal result, it seems reasonable to ask about it. I certainly have. If the doctor cannot answer why he/she dismissed or interpreted it in a certain way, then that is a big problem. I have been told, as an example, that in the U.S. doctors have to assure their physician assistants and nurses frequently that a lab result is not a worry. On the other hand, when there is a sick-looking patient with good labs, they tell them to watch carefully. It has nothing to do with status, just judgement from experience and training. If people feel better keeping binders of labs is helpful, that is fine. But nothing is going to substitute for communication and trust. I have been able to see labs on line for years now. I have inquired about a few of them. Has it helped? No. The doctor has always — and I mean always — been able to put the lab result in context.
Some more than others, but yes. We’re a very litigious society in general. Also, as of late, new agencies of government are getting involved in patient care. It’s kinda scary to tell you the truth.
I gotcha. So, the experience many are having is doctors not attending to the flagged results. The stories here - including mine - were just about our experiences with doctors not seeing the flags, ignoring them or not being able to easily compare to historical or remembering one person’s “normal” is. For me, it’s caused significant medical consequences. I did bring it up with my doctor once, specifically missing C Diff and me being in end stage. The best I got an “Oh my.”
As for the US example, not sure that’s accurate. But, you see all types. Again HUGE variability here. We don’t operate off one base and there is not one method of operating a practice, reading tests or clinical examines. Definitely one thing all us US patients would love to have. Just some consistency and centralization. Alas, we’re a for profit medical system so that will probably never happen.
Word on the grapevine tho is labs will be required to get on the same page, if you will. Meaning reference ranges, equipment and methods need to be more consistent to make it easier for patients and doctors. So, that’s a plus.
Until then, we’ll all be toting our binders!
The mention of online labs: yes, we have that. But, for example, I have 6 portals to login into to get records. Again it’s all privatized here. Non centralization. And all use different labs with different references, accuracy, etc. Having it online is ok, but it’s also a pain to remember so many logins! Haha
VVVVVVVVV Good question/VVVVVVVV tough question...
this recent popular discussion here is focused on computerised records...especially from doctors’ perspectives, but also how doctor’s issues with computerisation affect patients, so is relevant:
My immunology chief signed me up to our NHS univ hosp’s MyChart Patient Portal Pilot, which seems to me v like the Patient Portals my USA family have been using to track all their health info etc, communicate with medics etc. for years. Our version has been in development for ages and cost loads...i think these PPs are in development all round GB. All of which drew me to read Gawande’s article (the link is in the above post). When i replied to this post of yours, i was mulling over the frustrations i’d had trying to use apps that would keep track of my info...and Gawande’s article underlines how tricksy this sort of thing is for all involved
Coco — that is so true about litigation fears in the U.S. which leads to unnecessary tests and rising costs. Although I am sometimes surprised how hard it is for those of you in the U.K. to get appointments and procedures, it is impressive how the system works to practice evidence-based medicine. I think the doctors here absolutely hate the electronic records and say they don’t even have time to see their patients. On the other hand, the patient portals seem to work well. We can see labs, make appointments and e-mail our doctors. That would be great for a complicated patient like you. It would be much more efficient to be able to report any changes immediately through email. My point about viewing labs is that the most important thing is the communication of the results. I just read an article that states patients like having access to their records but over half feel confused about the results. This doctor was advocating an improved method of communication on the part of doctors. That makes a lot of sense. The patient portals do help in that if you see something concerning, you just send an e-mail to your doctor and you get an answer within 24 hours. Not all offices have these portals, but they should be moving in that direction.
I WANT to believe doctors here will make time to reply to PP messages...and i’d hope to see some encouraging baby steps on our pilot, AND i’ve kept to only truly vital messages re meds & appt dates + i’ve been ultra clear, concise & to the point. but so far NOTHING, except when i message the tech people. I think this is cause we’re only at pilot-stage. But i can’t see how the NHS won’t strain to get messaging btw medic & patient off the ground, whatever. I remain hopefully open-minded on the edge of my seat. Am just DELIGHTED to have been signed up to this pilot!
It will take a while to work out the kinks. But I think you will like it and benefit enormously when it is fully launched. Maybe you can give your input!
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Rheumy says no lupus
What do I have? Wish I could find out! 
Medication 
Can't figure out why my skin feels like it's burning.
Tooth Extraction while platelets are low??
