Blood Tests - what to check

[Bing505z]

My experience was that my Primary Care Physician ordered blood work which came back "normal." A few days later, a rheumatologist ordered another blood work which came back with the Wegener's GPA diagnosis. Rheumatologists know what to order.

Ed.

Your primary care physician should be able to order the right tests. If not, change your primary to an internist who can. Simple as that. If you live in the sticks, then I would suggest relocating near a medical center with physicians who are capable of handling this disease. People with cancer fly from all over the world to the largest medical complex in the world, the Texas Medical Center in Houston, TX, the forefront of advancing life sciences, to receive treatment. I would do the same with this vasculitis which is worse than cancer. I spoke with a lung surgeon at St. Luke’s in Houston, and he told me that St. Luke’s years ago began a protocol of testing for GPA and other forms of vasculitis when patients had unexplained sinus, lung, and other issues. Months, weeks, and even days are crucial here with GPA, so many know it all too well. That was a lung doctor saying this not a rheumatologist, at St. Luke’s, not some yada yada vasculitis center. I see many are hung up on it. I was seen by ENT who noticed something unusual with me and referred me to a pulmonologist who hospitalized me and along with a disease specialist/pathologist pulled 100 some tubes of blood from me upon admission and diagnosed me with GPA. I later pulled a copy of my files from that hospital, and I went through all the notes, and I could step by step, and idea by idea, and every scribble and marked out disease until right in the center of one page vasculitis was circled. I was wheeled into surgery, and they pulled a sample from my nose and my lung and it was confirmed, and it was that pulmonologist who treated me and turned things around...not a rheumatologist. Bottom line, it is inexcusable for any doctor to talk down to you, it is inexcusable for any doctor to not know what test to run. It is your money paying for your medical treatment, demand the best. I am not saying be difficult, but geez do not settle for mediocre blah blah blah, it is your life so get someone who knows what to do and puts you first. Do not settle for a clock watcher, patient herder and number biller.

[seied]

Your primary care physician should be able to order the right tests. If not, change your primary to an internist who can. =.

Correct! That's exactly what I did, I changed my PCP.
In my case GPA showed up as arthritis, so I sought a rheumatologist right away.
Your answer is spot on, I wish it could be pinned for all the newbies to read.

Ed.

[Bing505z]

Correct! That's exactly what I did, I changed my PCP.
In my case GPA showed up as arthritis, so I sought a rheumatologist right away.
Your answer is spot on, I wish it could be pinned for all the newbies to read.

Ed.

…Rheumatologist…and Internist…whatever…the person who digs in, runs the tests, does not stop until you the patient are on the road to remission. Let’s say you pick the rheumatologist in your local area, and since this is a rare disease, I would put long money on that this rheumatologist probably has not treated someone with GPA, or maybe just had one previous vasculitis patient. If this is a good Doc, with all the resources in this day, this Doc should be able to reach out and get you on the right treatment. I had a pulmonologist do just that for me, so if you have Docs twit-tiling their thumbs and scratching their heads and ass, bewildered by confusing symptoms while leaving you to ask on a forum why your ear is killing you and why your nose feels like hell itself….in todays world of tech connecting all these docs together, well damn your doc or ER or whatever clinic are a bunch of lazy #*@## and you need to change your situation.

[seied]

….in todays world of tech connecting all these docs together, well damn your doc or ER or whatever clinic are a bunch of lazy #*@## and you need to change your situation.

I've been recently diagnosed and have a good team of doctors working on my case. I don't know firsthand how things will be long term with this condition.

I read horror stories everywhere of people with GPA that over the years have suffered permanent damage due to late diagnosis, non-response to treatment, smoldering GPA, etc. I wonder if all that damage could have been prevented?

Ed.

[Bing505z]

I've been recently diagnosed and have a good team of doctors working on my case. I don't know firsthand how things will be long term with this condition.

I read horror stories everywhere of people with GPA that over the years have suffered permanent damage due to late diagnosis, non-response to treatment, smoldering GPA, etc. I wonder if all that damage could have been prevented?

Ed.

I'm sure that damage could have been prevented.

[Helen]

Hi, thank you all for taking the time and "Get it" to understand some of my frustrations. For so long, I've had questions which I am still struggling to get answers to. The Drs. I've seen over the years repeatedly were mainly: PCP, ENT, Neurology, Psychiatry and now Gastro. All remain “baffled” yet, I was denied even video-nasalscopy which someone on the forum mentioned to easily get. I did ASK for this along with other reasonable non-invasive technical tests in the last 1.5 yrs but denied.

Question: Do Weggies blood-work and health fluctuate like this?
Currently, I am (once again) at the ongoing sick “from something” & in survival mode. Physical activity increases the symptoms. I am not in "Distress" to require E.R. at this time. I have been basically living in a bubble since my last hospitalization, because the isolation has somewhat helped from not catching any public contagions. My current symptoms continues with the Nose, Ear and unfort. now Gastro. My lungs are not compromised at this time, but I do get out of breath easily now and I don't know why. I am thin. I tried to mention some of this to the latest Dr. -the Gastro...of any connection to this? They state it's not their area and did not believe so. My sense nags me that there is.

Bing: My long-term chronic asthma/bronchial issue is under control because of my change in environment. I am not in “lung distress" to require a pulmonologist at this time. I DID try to make an appt. today with a Specialist under the “Vasculitis Foundation” at the MAYO clinic and was denied by Scheduling. Reception refused based on her assumption of my condition to warrant an appt. Even with rheumatism, I was told “No, sorry, go see an Allergist". And that the Pulmonologist/Critical Care Specialist does not work in any area of Rheumatology, Respiratory or Immunology Disorders!? I didn't think Schedulers had the medical bkgnd to quickly assert their opinions on patients to deny them appts.

Seied: I also tried to make an appt. with a “Rheumatologist”. I'm unable to because the last basic bloodwork from my GP 4 mos. ago was “fine” which had them determine there was no need, (even though prior bloodwork was not). SO! All I was able to do once again, was make another redundant appt. with my GP. A horrible, expensive cycle. Approx. $400,000 has been spent in 4 yrs.

The computerized medical portal system causes a lot of grief because all medical staff (including scheduling) access this when they request your “Name and date of Birth” to “pull up your file” to review. It's shared all over. "Hippa Law" is bogus. I'm repeatedly given excuses of being “too complicated beyond their expertise” to be seen/evaluated and redirected back to the same Otolaryngology dept. who have hypothesized over the last 4 yrs. with no sinus assessments to my ears all this time.
The condescending responses and continuous denial for care, even from Schedulers in this manner is really demoralizing.
I apologize for such a long note. -H.

[Bing505z]

Well, Helen I hope you do get to feeling better and just wanted you to know what I put above was just an example, you know, something that worked for me and wasn't really saying you need to see a pulmonologist. So, sorry about that and well..you know, while I do understand that it gets frustrating when you are sick, and at times you get stressed, sometimes it is really, really great just to talk about it..you know, how one feels and all and get things out and maybe just relax a little. You know, it's like therapeutic and all, speaking of that I noticed you put above that you've seen a psychiatrist. Maybe making an appointment and talking things out could help with the anguish and stress and all, maybe an Rx or 2 to help take the edge off ...just a thought. Anyhoo, I do hope you get to feeling better. Cheers!

[Alysia]

Hello Alysia, thank you for your willingness to help share info. and understanding. That was just -one- of few horrible experiences. A reason to much of my frustration is because I've become further deafened from this, so my communication abilities are now much more limited. I noticed many weggies on the forum have hearing-loss to some degree, so I'm sure they can relate in some way to how difficult it is to to retrieve information, esp. none at all. My remaining energy is desperately trying to get any form of appropriate care and answers to this while I'm still capable. I have been consistently ill non-stop for over 5 yrs. The illness factor immediately worsened after another "unusual" anesthesia complication requiring a week of hospitalization. This impact continues to horribly effect me today because of the circumstances which is not reported. I believe it's critical for weggies to be aware of what specific anesthesia can do, because of it's respiratory effects.

Yes, you are right, along with abnormal blood-work in just past 4 yrs. the word “unusual” (unknown cause) was often next to: Influenza A, high level of Strep. Staph. Bronchitis. Shingles. OMs w/ effusion, retracted eardrums, ear pressure, sore throats, perforated septum, polyps, hives, smell and taste loss, migraines. The chronic vibrating roaring tinnitus is unbearable. Ultra-sensitive to cold temps.
Most recent: Progressive gastro. issues of (again) unknown cause. The Gastro. specialist was polite but unable (or not want) to discuss outside the box (or should I say anal?) to review my health history and the staff prescribed more drugs.
Lifetime?: VERY susceptible to catching contagions. “Unusual” allergens, chronic sinus issues, hives and lung infections which affects my ears. This eventually progressed to UTIs, chronic asthma requiring hospitalizationfor oxygen & partial lung collapse. Multiple nasal surgeries, ex. collapsed turbinates, polyps with now all 4 sinuses being compromised to my ears to be chronically dysfunctional... and yet, Specialists and ER Drs. are STILL “perplexed” what I may be ill from.

Another Fact: every Imaging reports something on the sinuses/septum. Progressive Chronic Sinus Disease. Ex."mucosal thickening in bilateral ethmoid and sphenoid sinuses, likely related to chronic inflammation".. but does not exclude infection in mastoid”. ...recurring mastoiditis...boggy, hypertrophic turbinates etc. List is long w/ unfamiliar terminology no one will discuss in past 5 yrs. For some reason, the nasal anatomy is consistently IGNORED even during inflammation/infections, as it's deem NOT pertinent to perhaps THIS to being the very cause & effect to my health all this time. This has been a very long-standing progressive problem, vicious cycles of hospital admittances with "No further work-up", but to “Follow-up with your GP on a plan". By the time I see my GP (1-2 mos. wait) my health has fluctuated again with the repeated “Don't know” *shrugs*. Referrals back to the SAME two specialties: Neuros. & ENTs (4-6 mos. wait) who once again, redirect, state it's beyond their expertise when trying to point out these factual symptoms, concerns and ask questions. It's very demoralizing. -H.

Thank you for sharing, Helen. That's a long painful and frustrating list. I am sorry. Dont give up. Insist on getting a better care. I understand how tough it is to be so sick and needs to fight for a decent treatment. You have our support. Please update us.

[Alysia]

Hi, thank you all for taking the time and "Get it" to understand some of my frustrations. For so long, I've had questions which I am still struggling to get answers to. The Drs. I've seen over the years repeatedly were mainly: PCP, ENT, Neurology, Psychiatry and now Gastro. All remain “baffled” yet, I was denied even video-nasalscopy which someone on the forum mentioned to easily get. I did ASK for this along with other reasonable non-invasive technical tests in the last 1.5 yrs but denied.

Question: Do Weggies blood-work and health fluctuate like this?
Currently, I am (once again) at the ongoing sick “from something” & in survival mode. Physical activity increases the symptoms. I am not in "Distress" to require E.R. at this time. I have been basically living in a bubble since my last hospitalization, because the isolation has somewhat helped from not catching any public contagions. My current symptoms continues with the Nose, Ear and unfort. now Gastro. My lungs are not compromised at this time, but I do get out of breath easily now and I don't know why. I am thin. I tried to mention some of this to the latest Dr. -the Gastro...of any connection to this? They state it's not their area and did not believe so. My sense nags me that there is.

Bing: My long-term chronic asthma/bronchial issue is under control because of my change in environment. I am not in “lung distress" to require a pulmonologist at this time. I DID try to make an appt. today with a Specialist under the “Vasculitis Foundation” at the MAYO clinic and was denied by Scheduling. Reception refused based on her assumption of my condition to warrant an appt. Even with rheumatism, I was told “No, sorry, go see an Allergist". And that the Pulmonologist/Critical Care Specialist does not work in any area of Rheumatology, Respiratory or Immunology Disorders!? I didn't think Schedulers had the medical bkgnd to quickly assert their opinions on patients to deny them appts.

Seied: I also tried to make an appt. with a “Rheumatologist”. I'm unable to because the last basic bloodwork from my GP 4 mos. ago was “fine” which had them determine there was no need, (even though prior bloodwork was not). SO! All I was able to do once again, was make another redundant appt. with my GP. A horrible, expensive cycle. Approx. $400,000 has been spent in 4 yrs.

The computerized medical portal system causes a lot of grief because all medical staff (including scheduling) access this when they request your “Name and date of Birth” to “pull up your file” to review. It's shared all over. "Hippa Law" is bogus. I'm repeatedly given excuses of being “too complicated beyond their expertise” to be seen/evaluated and redirected back to the same Otolaryngology dept. who have hypothesized over the last 4 yrs. with no sinus assessments to my ears all this time.
The condescending responses and continuous denial for care, even from Schedulers in this manner is really demoralizing.
I apologize for such a long note. -H.

As for blood work: I had few flares. Only in 2 of them my blood tests showed dramatic abnormal results. In other flares and also when my WG is active on "low level" (we call it smoldering) my blood tests dont show the WG activity. Vasculitis specialist should know not to judge according to the blood tests alone but to look at all the symptoms. And you sure have enough of them.

What gastro symptoms do you have ?

[Helen]

Still unable to get referral to Rheumatologist. Another member suggested trying an Internist instead. Still trying.
There are many Rheumatologists out there and my GP thinks any of them are doable. Wouldn't they require GPA background to understand this?

The GP said to "just go get bloodwork done", stating that P/C-Anca blood-test were ultra sensitive of 80% or more found in all Wegs., even during remission. My last basic bloodwork was ok - no red-flags compared to the ones prior. I'm told this is like a consistent forever type of marker in bloodwork of Wegs., regardless if one is in remission or not. True?

Right now I am so fatigued and sick, and my most debilitating symptom at this time are my EARs that started from damage I feel -could- have been addressed when I had the "unknown" flu symptoms in ER, but instead only given pain meds. It progressed fast from that period, and has not subsided since. I'm terrified it's permanent because none of the ENTs will truly address it. It's so chronically debilitating, affecting me physically and emotionally to function, and there's NO medication to help. Some of this, is very much alike another member: Rose in this forum (and I agree with her most recent ear theory). I am currently NOT having any respiratory infections like I had earlier, but do continue w/ consistent nasal discomfort with dry blood crusting/bleeding, obstruction and sporadic bleeding. But NO sinus infections, which I had often caught by public contagions. ENT says Wegs. only have A LOT of constant GREEN crusting and erosion, not blood crusting. Also said (once again) to not have the ability to internally evaluate my ears (yet did not look or do ANY imaging, audiology, bloodwork or review my history).

I'm appalled w/ why none of the hospitals didn't further investigate when I had abnormal levels of WBC, Neuts & CRP etc. CTs/MRIs reported chronic sinus inflammation/infection (which medical staff always ignore). Effusion in ears. With that, Drs. continued to be "perplexed", to instead try find something in the brain(!?!) and *surprise!* - no swiss cheese there, so, dx: migraine. It appears, headaches could be a secondary effect to abnormal bloodwork w/ sinus inflammation? It makes no sense, and I did not know at the time. Unfortunately, these events likely were when P/C Anca tests should've been done. Currently, I'm not having these severe type of symptoms to require hospitalization or E.R (yet).
So, my question is, would P/C Anca blood-testing still be reliable to show markers of Wegs. regardless? Or is it unpredictable?
I'd appreciate feedback, as I am new to this & trying so hard to get better. Thx for reading. -H.