Diagnoses of PBC not making sense anymore

Welcome to Connect, @usafretired15. I have to admit, I really admire your sense of humor in the midst of dealing with so much!
I'd like to introduce you to @regeanna @whyus @butterflygirl @tunkins1 @oregongirl @virginiasenior @helloshelly7969 @wmoser2613 @cathyh @petersen73 @rayhastings @aimeenc as they've discussed similar issues and I hope they will return to share their experiences.

I also found a few discussions that might interest you:
– Systemic lupus erythematosus (SLE): https://connect.mayoclinic.org/discussion/systemic-lupus-erythematosus-sle/
– Tumid Lupus with SLE Symptoms?: https://connect.mayoclinic.org/discussion/tumid-lupus-with-sle-symptoms/
– Have a few autoimmune disorders – now have consistent low grade fever https://connect.mayoclinic.org/discussion/have-a-few-autoimmune-disorders-now-have-consistent-low-grade-fever/

@usafretired15, since you mentioned, "I cannot get my Rheumatologist to listen to me regarding Systemic Lupus," may I ask if they've given you an explanation?

@usafretired15 You present a very interesting picture to me; a lot like mine, with a couple significant exceptions. I am 30 or so years older, and for significant reasons, I have never been pregnant. ... Just Male. But I had six sisters and one brother, and almost every element you pose, at least one of us has had or does have it, plus a lot more elements in autoimmune light chain dyscrasia of some sort. Lupus, Crohn's, nickel-sized rashes (Macular Skin) with furrows, bleeding and with infection, Arthritis, Carpal tunnel, tarsal tunnel, positive ANA, LECT2, Apolipoprotein, Gelsolin, AL, etc., etc. I suggest you ask your doctor to start looking at liver and kidney protein issues such as Amyloidosis, Have the doc get in touch with Mayo Amyloidosis Clinic, and watch Dr. Martha Grogan's videos on diagnosing Amyloidosis. If the doctor does, I know a few hundred other folks who who like to have that doc's name. My first clue was that my organs started going bad. Heart, lungs, kidneys, liver, spleen, thyroid, brain, spine. Even my teeth started cracking and breaking off. One doctor group diagnosed it in 20 minutes. https://bit.Ly/1w7j4j8 "Amyloid and Old Karl There is a list of Dr Grogan's suggest tests in there.

@lcmcphee
I can understand how confusing this must be for you as well as your group of specialists. Many of our members keep track of their lab results, x-rays, MRIs and other diagnostic results. They keep these in a binder and take it with them to each appointment. Nowadays, with electronic medical records, your doctors may be communicating with each other in that manner, but it still might be a good idea for you to keep track of all of your test results as well. You might be able to pick up changes that your doctors might miss in their hurried practices.

@hopeful33250 - I second this advice. I've been having health issues since birth, and in preparation for a specialist referral to Mayo I've been collecting every medical record I can get my hands on. It's amazing to see evidence of future problems (like the "gallbladder sludge" noted on my 2013 kidney stone CT in light of my 2016 emergency gallbladder removal for a large gallstone) or never mentioned abnormalities that show up on the report. I think many times the "primary problem" is the only thing physicians are looking at, so other seemingly irrelevant findings are overlooked. Now, I don't know whether asking about those at the time of the report could have helped prevent future health problems or not, but I've started requesting, collecting and actually reviewing all my medical testing and asking about any abnormalities noted, regardless of relevance to current problems.

I absolutely am keeping and recommend keeping printed copies of any results/documentation/etc., but I would also suggest considering keep an electronic record with Excel as well. The great thing is then you can search all your results for anything specific -- what records do I have relating to thyroid, for example, or when have I been prescribed Septra. If you make a categories column you can then filter all results related to Cardiology for example or between XX and XX date to print off a summarized version for doctor/appointment (a lot easier to fax three pages of spreadsheets than 10 years of individual tests results!). It also allows you to see trends and compare results better. Admittedly, the work I'm currently doing chronicling, organizing and documenting all my past medical information and going forward is likely overkill and partially attributable to my job working with data and computers, but here are some things I'm doing for previous medical records and going forward so I'm prepared with all relevant documentation in any future medical crisis:

1. An appendix (pun SO intended) with a list of all medical documentation paperwork with date, department/field (rheumatology, gastroenterology, etc.), facility, physician, category (labwork, radiology, report, etc.), number of pages and any notes (if it's labwork I'll put the items evaluated -- CBC, CMP, etc., or any abnormalities found, or reason for visit if it's a doctor's app't, etc.).

2. Vaccination list

3. Medication list, including medication name, what it's treating, dosage, schedule, start date/discontinuation date, prescribing doctor, any side effects experienced and source of the information for historical medication information (I.e., Emergency room documentation from XX/XXXX date). One of the possibilities for my current issues is some type of mast cell activation disorder or a drug hypersensitivity, so I want to see how often I've been on a particular drug and had XXX reaction, or what medications I was on when XXX test result came back abnormal.

4. Sick visits - Tracking appointments with date, doctor, complaint/problem, exam abnormalities noted by doctor (important to include any, whether seemingly related to that complaint/appointment or not), summary of what was discussed, official diagnosis, prescription/treatment, age and vitals (temp, height, weight, blood pressure).

5. Blood work - I have a long list of the common tested items (WBC, Iron, Triglycerides, TSH, etc.) in the first column; a list of reference ranges in the second column; and each row has the date, notes (like why it was taken or how you felt that day), whether you were fasting, the time it was taken and then the results. I put pretty much any blood work in here that is done routinely or frequently, or possibly affected by or related to traditional blood values like WBC, iron, etc. (I include CRP/ESR/TSH/cholesterol, for example, since those can influence or be affected by traditional values and may be taken many times to evaluate disease progress); any blood work that is more diagnostic or one-time, like Mono test or ANA screening goes in a separate spreadsheet. Again, it's about being able to see patterns or possible correlations -- "huh, my TSH goes up when my iron is low", or when you're in the middle of a chronic issue you can see which way a value is trending. It gives you a better idea of which values often show up abnormal, and a baseline from a healthy time to compare to during a bad health issue.

6. Urine - Same as blood. Probably not as relevant or important to most people (I'm having problems with urinary frequency and having lots of these tests done, so it is more important than usual to me), but still worth tracking because urine can tell you some things that might affect your other results and/or that your doctor might ask about, like whether you are/were dehydrated when you had XXX result or test for example.

7. Special testing - All those specialty and rarely repeated tests not included in #5 or #6, like TB skin test, ANA panel, HIV, etc., with date, test (i.e., ASO screen or skin culture), referring doctor, result (in actual value if included, not just Negative/positive), notes (like Epstein-Barr comes with an overall "interpretation" - "this is indicative of previous infection", or possible conflicts (like "Was taking proton pump inhibitor Pantoprazole" for H. Pylori results because there's a note this can affect the result), test disclaimers (those little notes on the results, like "Per CDC criteria, Lyme is only diagnosed with five positive IgG results..." or "This test does not differentiate between past or current infection") and any resulting action (i.e., "started on Bactrim 2x daily for 7 days" or "MRI of the brain scheduled").

8. Radiology/Pathology - Tracking imaging test results with date, test (i.e., MRI of brain without contrast), ordering physician, technique from the report (the technical details, like "biopsy based on a 3.5cm lesion taken from liver", or radiation exposure or contrast measurement -- stuff I don't usually understand but could make a difference to the doctor), results (all the nitty gritty details like "the right thyroid measures XXX" or AFB %, Singles (PVCs), etc.) the overall impression/summary ("small hiatal hernia, otherwise unremarkable"), the "history" noted on the report (usually the reason for the exam, like low TSH or nausea or stone extraction; and whether any comparison was made to previous imaging/tests).

In all of these, I will bold and make the test red for any abnormalities -- whether it's a high or low value on the blood work spreadsheet, or a mention that "Uterus is retroverted" on an ultrasound, regardless of whether it's super high or low or crazy abnormal. You never know what might be relevant in the future -- for example, my spine MRI mentions "Mild mid-cervical spondylosis", which means nothing to me now with no back pain and is fairly common, but if I start having back pain ten years down the road this sure might start to seem more interesting.

One note on reference values for #5 and #6 -- like I said, I have a column for reference ranges; however, different labs will have different ranges, or your reference ranges may change based on your age, weight, etc. I always bold and make the text red for any value flagged in the report, regardless of the reference range on the spreadsheet; if there's a difference in the range that affects whether it's "flagged" or not, I insert a Comment in that cell's value like "Marked normal at 4.5 mg/dL with reference range of 6-8 mg/dL" or "Flagged high at 5.2 oz with reference range for ages 3-12 of 4-5 oz"). That way, if I'm wondering why a value was flagged, I can look at the comment rather than having to drag out the original paperwork.

Like I said, this seems (and in all likely is) overkill and insane, but I've found it useful to send a summary of my blood work history to a specialist rather than 80 pages of lab results, for example. You could always pick and choose specifics (like excluding a column for technique on radiology or a column for test disclaimers on "special testing", for example) or only track certain things like blood and radiology based on your personal situation. I do think it's incredibly helpful -- I had a a recent positive TB test, for example, and had to track down where and when I had my last negative result; now it's all in my "special testing" spreadsheet and I can just use the Find function.

Pursuing a diagnosis for a chronic health condition can be overwhelming, but having everything organized, searchable and right at your fingertips can really help. Going back through my history I was surprised to see that previous tests had been done for autoimmune diseases for example, or that my "malrotated appendix" removed in 2016 was actually originally noted on a 2013 X-ray. I just wish I'd started documenting sooner! Hopefully someone else will see this and find it helpful or inspire ideas.

Good luck and hope you feel better soon!

@hopeful33250 - I second this advice. I've been having health issues since birth, and in preparation for a specialist referral to Mayo I've been collecting every medical record I can get my hands on. It's amazing to see evidence of future problems (like the "gallbladder sludge" noted on my 2013 kidney stone CT in light of my 2016 emergency gallbladder removal for a large gallstone) or never mentioned abnormalities that show up on the report. I think many times the "primary problem" is the only thing physicians are looking at, so other seemingly irrelevant findings are overlooked. Now, I don't know whether asking about those at the time of the report could have helped prevent future health problems or not, but I've started requesting, collecting and actually reviewing all my medical testing and asking about any abnormalities noted, regardless of relevance to current problems.

I absolutely am keeping and recommend keeping printed copies of any results/documentation/etc., but I would also suggest considering keep an electronic record with Excel as well. The great thing is then you can search all your results for anything specific -- what records do I have relating to thyroid, for example, or when have I been prescribed Septra. If you make a categories column you can then filter all results related to Cardiology for example or between XX and XX date to print off a summarized version for doctor/appointment (a lot easier to fax three pages of spreadsheets than 10 years of individual tests results!). It also allows you to see trends and compare results better. Admittedly, the work I'm currently doing chronicling, organizing and documenting all my past medical information and going forward is likely overkill and partially attributable to my job working with data and computers, but here are some things I'm doing for previous medical records and going forward so I'm prepared with all relevant documentation in any future medical crisis:

1. An appendix (pun SO intended) with a list of all medical documentation paperwork with date, department/field (rheumatology, gastroenterology, etc.), facility, physician, category (labwork, radiology, report, etc.), number of pages and any notes (if it's labwork I'll put the items evaluated -- CBC, CMP, etc., or any abnormalities found, or reason for visit if it's a doctor's app't, etc.).

2. Vaccination list

3. Medication list, including medication name, what it's treating, dosage, schedule, start date/discontinuation date, prescribing doctor, any side effects experienced and source of the information for historical medication information (I.e., Emergency room documentation from XX/XXXX date). One of the possibilities for my current issues is some type of mast cell activation disorder or a drug hypersensitivity, so I want to see how often I've been on a particular drug and had XXX reaction, or what medications I was on when XXX test result came back abnormal.

4. Sick visits - Tracking appointments with date, doctor, complaint/problem, exam abnormalities noted by doctor (important to include any, whether seemingly related to that complaint/appointment or not), summary of what was discussed, official diagnosis, prescription/treatment, age and vitals (temp, height, weight, blood pressure).

5. Blood work - I have a long list of the common tested items (WBC, Iron, Triglycerides, TSH, etc.) in the first column; a list of reference ranges in the second column; and each row has the date, notes (like why it was taken or how you felt that day), whether you were fasting, the time it was taken and then the results. I put pretty much any blood work in here that is done routinely or frequently, or possibly affected by or related to traditional blood values like WBC, iron, etc. (I include CRP/ESR/TSH/cholesterol, for example, since those can influence or be affected by traditional values and may be taken many times to evaluate disease progress); any blood work that is more diagnostic or one-time, like Mono test or ANA screening goes in a separate spreadsheet. Again, it's about being able to see patterns or possible correlations -- "huh, my TSH goes up when my iron is low", or when you're in the middle of a chronic issue you can see which way a value is trending. It gives you a better idea of which values often show up abnormal, and a baseline from a healthy time to compare to during a bad health issue.

6. Urine - Same as blood. Probably not as relevant or important to most people (I'm having problems with urinary frequency and having lots of these tests done, so it is more important than usual to me), but still worth tracking because urine can tell you some things that might affect your other results and/or that your doctor might ask about, like whether you are/were dehydrated when you had XXX result or test for example.

7. Special testing - All those specialty and rarely repeated tests not included in #5 or #6, like TB skin test, ANA panel, HIV, etc., with date, test (i.e., ASO screen or skin culture), referring doctor, result (in actual value if included, not just Negative/positive), notes (like Epstein-Barr comes with an overall "interpretation" - "this is indicative of previous infection", or possible conflicts (like "Was taking proton pump inhibitor Pantoprazole" for H. Pylori results because there's a note this can affect the result), test disclaimers (those little notes on the results, like "Per CDC criteria, Lyme is only diagnosed with five positive IgG results..." or "This test does not differentiate between past or current infection") and any resulting action (i.e., "started on Bactrim 2x daily for 7 days" or "MRI of the brain scheduled").

8. Radiology/Pathology - Tracking imaging test results with date, test (i.e., MRI of brain without contrast), ordering physician, technique from the report (the technical details, like "biopsy based on a 3.5cm lesion taken from liver", or radiation exposure or contrast measurement -- stuff I don't usually understand but could make a difference to the doctor), results (all the nitty gritty details like "the right thyroid measures XXX" or AFB %, Singles (PVCs), etc.) the overall impression/summary ("small hiatal hernia, otherwise unremarkable"), the "history" noted on the report (usually the reason for the exam, like low TSH or nausea or stone extraction; and whether any comparison was made to previous imaging/tests).

In all of these, I will bold and make the test red for any abnormalities -- whether it's a high or low value on the blood work spreadsheet, or a mention that "Uterus is retroverted" on an ultrasound, regardless of whether it's super high or low or crazy abnormal. You never know what might be relevant in the future -- for example, my spine MRI mentions "Mild mid-cervical spondylosis", which means nothing to me now with no back pain and is fairly common, but if I start having back pain ten years down the road this sure might start to seem more interesting.

One note on reference values for #5 and #6 -- like I said, I have a column for reference ranges; however, different labs will have different ranges, or your reference ranges may change based on your age, weight, etc. I always bold and make the text red for any value flagged in the report, regardless of the reference range on the spreadsheet; if there's a difference in the range that affects whether it's "flagged" or not, I insert a Comment in that cell's value like "Marked normal at 4.5 mg/dL with reference range of 6-8 mg/dL" or "Flagged high at 5.2 oz with reference range for ages 3-12 of 4-5 oz"). That way, if I'm wondering why a value was flagged, I can look at the comment rather than having to drag out the original paperwork.

Like I said, this seems (and in all likely is) overkill and insane, but I've found it useful to send a summary of my blood work history to a specialist rather than 80 pages of lab results, for example. You could always pick and choose specifics (like excluding a column for technique on radiology or a column for test disclaimers on "special testing", for example) or only track certain things like blood and radiology based on your personal situation. I do think it's incredibly helpful -- I had a a recent positive TB test, for example, and had to track down where and when I had my last negative result; now it's all in my "special testing" spreadsheet and I can just use the Find function.

Pursuing a diagnosis for a chronic health condition can be overwhelming, but having everything organized, searchable and right at your fingertips can really help. Going back through my history I was surprised to see that previous tests had been done for autoimmune diseases for example, or that my "malrotated appendix" removed in 2016 was actually originally noted on a 2013 X-ray. I just wish I'd started documenting sooner! Hopefully someone else will see this and find it helpful or inspire ideas.

Good luck and hope you feel better soon!

@peabody88
I admire your organization! I'm sure it has been helpful to you to keep such detailed records and notes.

@peabody88 Like your style. I have done something of the same, but with a little less inclusiveness. I have posted mine on Dropbox at https//bit.Ly/1w7j4j8 under "Amyloid and Old Karl" . However, I have found that very few doctors will look at it. So I do it mostly for my own satisfaction and concern, and other patients and caregivers. Some Clinics even have protocols forbidding their caregivers from looking at such material. I guess the reason is that --- (W)ell, I don't know.... Job security, I guess.

@hopeful33250 - I sure hope it does! I just finished getting everything together (it's a pain trying to get your medical records) and can't report any diagnosis-instigating discoveries yet, but I'm hopeful. Some interesting/weird findings for sure. At the very least, it's helped me feel more organized and in control, which is nice. Fingers crossed!

@oldkarl - A fellow data cruncher! How fascinating! Amyloidosis is one of the things I actually asked about as a long shot (serum and urine immunofixation came back negative). I particularly empathized with your mention of the frequent "it's all in your head," or, likely because I'm a woman "anxiety can cause XXXX." How did you keep positive in the face of constant skepticism and doubt? What made you so sure it WASN'T something psychological?

I also enjoyed your elephant in the room story. I think I mentioned in my post above how surprised I was once I acquired my medical records and reports to see so many "abnormalities" noted by the radiologists that were never mentioned to me, and I suspect were overlooked because of that "tunnel vision" you talked about. It's interesting to see in hindsight some precursors or indications of future problems show up.

And you're right, now that I've completed my spreadsheet with all my values and testing charted so it can easily be reviewed without a million pieces of paper I've been passing it out to every doctor I can, but I don't know if any of them are actually using it. I think it at least helps me ask better questions, which I hope would in turn mean increased likelihood of diagnosis, but I may not be the best poster child since I still don't have answers. It is also helpful not to be digging through boxes or searching through e-mails to find a specific test or something.