Blood Tests - what to check

[seied]

Wikipedia: Rheumatologists deal mainly with clinical problems involving joints, soft tissues, autoimmune diseases, vasculitides, and heritable connective tissue disorders.
Many of these diseases are now known to be disorders of the immune system. Rheumatology is increasingly the study of immunology.Rheumatologists treat arthritis, autoimmune diseases, pain disorders affecting joints, and osteoporosis. There are more than 200 types of these diseases, including rheumatoid arthritis, osteoarthritis, gout, lupus, back pain, osteoporosis, and tendinitis. Some of these are very serious diseases that can be difficult to diagnose and treat. They treat soft tissue problems related to musculoskeletal system sports related soft tissue disorders.

--
A rheumatologist with experience in treating GPA and who works at a big university medical school is your best bet.

Ed.

[Alysia]

The irony is, I'm here "on topic", but yet redirected.
I totally disagree. That comment was aggravating and ignorant, to quickly jump into assuming that all Drs know best. I hear this phrase often from senior citizens where many don't even know what pills they're ingesting in their -A.M, Noon, Mid Aft. Evening. Bedtime pillboxes. You have no idea what has and had transpired in my life due to incompetent and unethical physicians who did/do not have the knowledge, causing further harm due to my prior naivety in trusting "to do as your doctors say".
Drs. are not Gods. So many here have tried in vain for years to seek a "DR" to listen and were in the wrong hands - No? This is where I'm at. Patient have the right to understand what the "best" Drs. are doing behind the curtain with the controls. To be transparently informed and understand their results/reports. If the Dr. does not know and it's not said, then what? We ask the public for support.
Communication is a very critical necessity for appropriate care.

If you read my post carefully Vdub, you will see there was no "advice", nor discussion at ANY time. NOTHING. This is just one experience of many. And I am unable to return to find out. Is this what Drs. do best? I managed to order the reports a year later to observe these findings. So, HOW am I able to follow or understand what some of these results/terminology mean, when it hasn't been discussed? Again, there's no Dr. Sure- go "google" it, but it's ambiguous. I came here in the hopes to gain some new knowledge and advocacy from others to help move forward, not just compare and share ailments as if in a nursing home. To provide my own input on certain subjects that may be beneficial to others which in turn be aware of what to ask their "best" Dr. next time.
Knowledge is key. I have observed some intelligent participants on the forum, with the possibility of some in the medical sector who may be of help to provide some input that's outside your discipline. Thanks. -H.

I agree with you, Helen. We must be our own best docs. It means that we need to know as much as possible about WG, symptoms, tests, treatments. We need to question and challenge every dr. And give him the credit only after he showed us that he deserves it.

[Alysia]

That was helpful - thanks Ed. It appears those in the field of Rheumatology may be the only ones who appear to recognize the reasoning of all this specific type of inflammation in bloodwork to be able to understand this. What about Immunologists - would they also be familiar with this?

My question about this "Anca". Is the exact word "Anca" on blood-panel reports, or is it classified under a different term? What should I be looking for to see if this was done as perhaps I may have. Please correct me if I am wrong, but it appears this this test is useful ONLY when one has a present flare-up, as it will not show up with those in remission?

I need to be my own self advocate to educate myself to understand when reviewing my records to make copies to provide all these findings to the next appropriate Dr. which takes months to see (and once in, the time is rushed) including with the GP. I like to be prepared, write questions down ahead of time to avoid further delay in care. But I cannot do this without knowing what to do or ask and is why information and input from those here is helpful. Thank you -H.

As for anca:

There are 4 blood tests included in the anca battery:

C-anca and PR3
P-anca and MPA

For weggies usually the C-anca is relevant. Some of us, but not all of us, can get positive C-anca and higher then the normal pr3. C-anca is positive only in WG and in Crohns' disease. So positive C-anca and or higher then normal PR3 are indicators for wg activity. For me, for example, in the onset I had high positive C-anca. My pr3 is becoming elavated when flare is coming.

BUT -
Not all weggies are C-anca positive. Some get negative but they still have wg. But if you are positive, you have wg and it is active.

Please ask whatever you feel like.

Welcome to the forum.

[Alysia]

During one of my E.R experiences, which required admittance and isolated for 3 days to a room where there were no Drs. I was originally carried to E.R very sick, not lucid to be able to communicate. It appears E.R only ran the usual basic work up. No one would discuss my E.R lab work/results later. They evaded to ask me anything of my symptoms during my stay, but same time I was so heavily sedated that I could not get up to use the washroom. Even the much later follow-up to the ENT Dr. appt. at the same hospital would not discuss the results. Claimed "perplexed".

I do not have the knowledge to understand these results which is frustrating. i learned much later by getting my blood-work report that I had, (like many times before): elevated WBC in Neuts. and ABS Neuts, Echinocytes, Ovalocytes, very low Lymphs. high glucose level. The extreme one was very high "CRP High Sens." at: 110.5 (ref. range is <10.0). What is CRP?! I do not see anything of the word "Anca", and it appears they did not run a full metabolic panel. Along with this my basic 5mm "head" CT reported "Chronic inflammation in bilateral ethmoid and sphenoid sinuses.".... "cannot exclude infection in the mastoid" region. Next I was hooked up to IV of Narcotics, totally sedate to prevent me from being able to communicate. None of the Drs. sat down or discussed anything to me during this whole time.

Yet, with this data, all of the unseen Drs. reported to be "baffled", claiming to not see anything wrong to assess further. The Hospital otolaryngologist threw his report in my file that he "could not see anything wrong and there was nothing further he could do"(without any assessments!!) I was released with around 3 Antidepressant and anxiety/narcotic prescriptions which only made me much worse by giving me head zaps ON TOP of this ongoing illness. My suffering and pain of this continues to current.

Does anyone here have any knowledge or familiarity to having these SAME type of results? Your feedback would be so much appreciated to try help guide me out of this. Thank you - H.

I am so sorry that you had such an aweful experience.
WBC above the normal and also CRP above the normal are indicators for an infection/ inflamation going on somewhere in the body.
It can be an infection as a result of germs and or an auto immune infection, meaning WG activity.
If I understand correctly your CT results, it means that you have an infection in the sinuses, which is very common for weggies. Do you have nose bleedings ? Crustings ? What brought you to the ER ? What symptoms do you have ? Sorry if I ask about something which you wrote somewhere else here.

[Helen]

I am so sorry that you had such an aweful experience.
WBC above the normal and also CRP above the normal are indicators for an infection/ inflamation going on somewhere in the body.
It can be an infection as a result of germs and or an auto immune infection, meaning WG activity.
If I understand correctly your CT results, it means that you have an infection in the sinuses, which is very common for weggies. Do you have nose bleedings ? Crustings ? What brought you to the ER ? What symptoms do you have ? Sorry if I ask about something which you wrote somewhere else here.

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.

[Pete]

@Helen. You mention having seen several specialists without getting any relief. Perhaps it’s time to see a bona fide Vasculitis specialist or have one of your doctors consult with one. I hope there is one near you listed on the Vasculitis Foundation’s website.

[Helen]

@Helen. You mention having seen several specialists without getting any relief. Perhaps it’s time to see a bona fide Vasculitis specialist or have one of your doctors consult with one. I hope there is one near you listed on the Vasculitis Foundation’s website.

Thanks Pete. Yes - since the helpful info. here, I have been trying to.
Insurance informed that it did not require a referral which is good news. The bad news, is the (booked 2 mos.) Rheumatology office won't provide an appointment slot without one.
My GP is also booked for the next 2 months when all I need is a referral. So, at this time, I've been trying to find a bit faster approach to reach my GP, to simply get this before Summer. The process seems to be as bad as the automated phone menus, with the long wait resulting in: "...due to high volumes of calls, we cannot take your msg at this time" *click* Still trying. -H.

[Pete]

@Helen. I think you should call your PCP and ask him to make a referral by phone.

My insurance was ok with me making an appointment at Cleveland Clinic via self referral.

[drz]

Thanks Pete. Yes - since the helpful info. here, I have been trying to.
Insurance informed that it did not require a referral which is good news. The bad news, is the (booked 2 mos.) Rheumatology office won't provide an appointment slot without one.
My GP is also booked for the next 2 months when all I need is a referral. So, at this time, I've been trying to find a bit faster approach to simply get this before Summer. The process seems to be as bad as the automated phone menus, with the long wait resulting in: "...due to high volumes of calls, we cannot take your msg at this time" *click* Still trying. -H.

Use a walk in service or ER at hospital to get an immediate referral if you are having symptoms that warrant immediate attention.

[seied]

Can you bring someone with you to help with communications?
ER at Cleveland clinic sounds like the best option right now.

I'm too new at this, but others here may confirm that these ongoing symptoms for 5 years may indicate full-blown wegener's because your doctors have failed to get you in remission.

Do we know a weggie in her town that perhaps can assist Helen with dealing doctors?
Where do you live?

Ed.