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Hoping for a diagnosis soon - opinions much appreciated!


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Old 07-19-2016, 11:02 AM   #1
LisaC1818
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Hoping for a diagnosis soon - opinions much appreciated!

Im new to this board, but have been suffering from extreme fatigue, headaches and joint pain for many years. started about 7 years ago, and I tested positive for Lyme disease. Went on antibiotics for over 2 months, felt even worse on them! I never really got back to myself after this. My main symtoms are
Extreme Fatigue
Joint Pain (worst in the hand wrist)
low grade fever (averages around 99.5)
headaches
muscle weakness
Feeling like i'm always coming down with the flu
brain fog

Everytime I went back to my dr, she always blamed my symptoms on recurring Lyme, but i'm just not sure this is the case anymore and i can't stand to feel like this anymore I finally went to another primary care Dr for another opinion, who ordered more specific testing with an arthitis panel. My lyme came back negative so he doesn't believe the Lyme is what is still causing my symptoms.

The following tests came back abnormal, my dr referred me to a rheumy who I don't see for a couple weeks. I would like opinions because I am also having a hard time getting pregnant and I am supposed to begin IVF injections next week :/ Should I put this off until I get the rhemy's opinion on blood work? Are these results pointing to anything specific? My dr mentioned lupus but didn't give much information to me, wanted me to see specialist. They just all seem so borderline that I feel like I won't be getting a diagnosis anytime soon

My abnormal results are
ANA screen positive
HIGH Titre 1:80 (reference <1:40 negative) PATTERN: homogenous
HIGH DS DNA ABS = 14 (ref <=4 negative)
LOW C3 serum = 76 (ref 90-180)
LOW C4 Complement = 11 (ref 16-47)
HIGH TPO = 19 (ref <9iu/ml)
HIGH THYROGLOBULIN AB = 15 (ref <=1)
HIGH PTT LA SCREEN = 41 (ref <=40)

All other labs (SS-A, SS-B, CRP, Rheum factor etc) and cbc came back normal. Can i get opinions please? WOuld be greatly appreciated!

 
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Old 08-01-2016, 02:25 PM   #2
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Lisa, hello & welcome. I'm sorry you've been struggling with all this. (Also sorry for not writing sooner, I had a wicked bad month with my computer.) Best place to start is one of the "sticky posts"; those are the permanent info posts located about the user threads. Look at the one with diagnostic criteria. Generally, but NOT always, a patient must meet 4 or more to sustain a diagnosis of systemic lupus.

Although some of your lupus-oriented tests look suggestive to me (but I'm just a patient), the rheumatologist may or may not consider certain ones to be *substantially* elevated. Starting with ANA: it's a very general test, and a "significant" ANA may be quite a bit higher, like 1:640 or 1:1280. (I think doctors vary on how they view this.)

A more significant test in the world of lupus is anti-ds-DNA. But it can be greater than negative but still not be considered as "positive" or "strongly positive". To illustrate: my lab parses this test as follows: negative, equivocal, weak positive, positive, and strong positive. So I can't really guess what your result of 14 might mean: it may be way down in the "equivocal" range, or it may mean something a lot higher---it depends on the ranges used by that lab.

Although not formal criteria, C3 and C4 serum complements do often deplete due to chronic inflammation in SLE. But I believe they can deplete in other conditions as well.

PTT is one of a group of tests used in assessing for antiphospholipid syndrome (APS), an autoimmune blood clotting disorder. There's a separate "sticky" on APS that you'll want to read. But I believe *additional* tests are needed to make sense of PTT. Several APS-related tests are included in one of the lupus criteria, btw: antiphospholipid antibodies, lupus anticoagulant, and false-positive syphilis test. I think this is because MOST, but not quite all, people who have APS also have lupus.

But I suspect there's a second path of inquiry indicated for you: thyroid. I don't know very much about thyroid tests, but I think from what I've read that TPO can indicate chronic inflammation (thyroiditis), but that it can also elevate in lupus, Sjogren's, RA, and pernicious anemia. As for thyroglobulin, I think it can elevate in Hashimoto's thyroiditis or Grave's disease, and with thyroid tumors. Interestingly, symptoms of thyroid disorders can overlap substantially with those seen in milder lupus, meaning your symptoms might *possibly* be explained by a thyroid condition. But then again, a thyroid disorder can co-exist with lupus, meaning it's possible to have both. So I think you need thoroughly vetted for both lupus (and its close cousins) AND thyroid issues. (That's what I'd want done, personally.)

As for starting IVF injections, I'd ask those professionals for input---then ask each doctor you see upcoming. (Which I hope isn't many, btw; I hope you get answers soon!) And whether you proceed with IVF injections now or later, I do wish you the very best of luck!

Again, sorry for being slow to write. I hope you post more soon & that others will add (or correct ) the above. Just a rough start anyway---so please feel free to ask more questions or for rewording. Bye for now, with warm wishes.

 
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Old 08-01-2016, 03:51 PM   #3
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Quote:
Originally Posted by LisaC1818 View Post
Im new to this board, but have been suffering from extreme fatigue, headaches and joint pain for many years. started about 7 years ago, and I tested positive for Lyme disease. Went on antibiotics for over 2 months, felt even worse on them! I never really got back to myself after this. My main symtoms are
Extreme Fatigue
Joint Pain (worst in the hand wrist)
low grade fever (averages around 99.5)
headaches
muscle weakness
Feeling like i'm always coming down with the flu
brain fog

Everytime I went back to my dr, she always blamed my symptoms on recurring Lyme, but i'm just not sure this is the case anymore and i can't stand to feel like this anymore I finally went to another primary care Dr for another opinion, who ordered more specific testing with an arthitis panel. My lyme came back negative so he doesn't believe the Lyme is what is still causing my symptoms.

The following tests came back abnormal, my dr referred me to a rheumy who I don't see for a couple weeks. I would like opinions because I am also having a hard time getting pregnant and I am supposed to begin IVF injections next week :/ Should I put this off until I get the rhemy's opinion on blood work? Are these results pointing to anything specific? My dr mentioned lupus but didn't give much information to me, wanted me to see specialist. They just all seem so borderline that I feel like I won't be getting a diagnosis anytime soon

My abnormal results are
ANA screen positive
HIGH Titre 1:80 (reference <1:40 negative) PATTERN: homogenous
HIGH DS DNA ABS = 14 (ref <=4 negative)
LOW C3 serum = 76 (ref 90-180)
LOW C4 Complement = 11 (ref 16-47)
HIGH TPO = 19 (ref <9iu/ml)
HIGH THYROGLOBULIN AB = 15 (ref <=1)
HIGH PTT LA SCREEN = 41 (ref <=40)

All other labs (SS-A, SS-B, CRP, Rheum factor etc) and cbc came back normal. Can i get opinions please? WOuld be greatly appreciated!
I believe I posted in another thread of yours, so I won't repeat all I said before but I did want to mention asking for a CK muscle enzyme test when you feel you are having a flare of muscle weakness. There are different types of myositis and that is the best screening blood test for it. Just another piece of puzzle to fill in.

 
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Old 08-02-2016, 10:15 AM   #4
LisaC1818
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Thank you both so much for your responses! I've read alot of your posts and you both are very knowledgeable on this subject! A quick update;

I saw a rheumotologist last week. Based on my symptoms and positive bloodwork, he said he can't say i have lupus but he can't say I don't have it. He said i'm in a very grey area right now and only have 3 out of the 11 criteria. He suggested to try to go on plaquenil and see if I feel better. Not quite sure how I feel about starting a new medication while trying to get pregnant. (esp not knowing for sure what is wrong) I'm nervous about it so, i haven't started it yet :/

He did also say I should see an endocrinologist for the thyroid antibodies, as I might have a thyroid problem. So I will be seeing an endo next Tuesday.

Also, my dsdna was done by quest and the references it give is
<= 4 negative
5-9 indeterminate
>=10 positive

He seemed most convinced that this is something autoimmune because of the low complement levels.

I see on my blood the PPT lupus anticoagulant is 40
with the reference being <40 sec He didn't mention anything to me I guess because its borderline

This is just all so confusing! You are right, alot of these conditions all share the same symptoms and its so hard to pinpoint exactly whats wrong. I have one Dr say its absolutely Lyme, and the other saying he believes its 100% not lyme, and its something autoimmune, but in a grey area right now. Hopefully the endocrinologist can shed some light on the situation! I just want to feel like myself again!

Thanks again for your opinions and insight! I really appreciate it and its nice to be able to talk to people who understand how you feel! Its tough when you look healthy to other people, but on the inside you feel like crap

 
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Old 08-02-2016, 10:48 AM   #5
LisaC1818
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Also, just wanted to show all the tests that came back normal from the rheumy visit

Cardiolipin IGM IGA & IGG
Immunoglobins IGG, IGA & IGM
TSH (.7 ref .4-4.5)
ESR
SSA & SSB
Rheumatoid Factor
CCP IGG
C-Reactive Protein
Vitamin D, C, B6, B1 & B3
Beta 2 glycoprotein
DRVVT
Celiacs

All my CBC came back normal
Platelets a little low being 134 (ref 140-400) but my dr didn't mention this either being a concern. Its just below the low end.

Also had urine test by my pcp which came back as follows
RBC 0-4 REF 0-3
WBC 5-9 REF 0-3
Epithelial cells FEW
Mucous Threads OCC
Bacteria FEW
Glucose NEG
Bilirubin NEG
Ketone NEG
Blood MODERATE
Protein NEG
Urobilinogen .2 REF .2-1.0
Nitrite NEG
Leukocyte Esterase TRACE

The rheumatologist looked over it quick and said the urine is fine.

 
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Old 08-03-2016, 04:54 AM   #6
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Lisa, as you say, rather confusing... I'm curious about two things in particular, but I can't guess what either "means". I'd ask my doctors, if I were you:

1. TSH, when it's that low, very close but not quite out-of-range. What might that mean? (When do you see the endocrinologist?)

2. In urine, WBC's, moderate blood, and a few bacteria. (But no protein, and that part is good for sure.) What might those suggest? An infection? Stones? Signs of Interstitial Cystitis (also an autoimmune)? Or what? (I just don't see those results as entirely "normal", is what I'm saying, but I'm just a patient.)

I'm a bit surprised that your rheum prescribed Plaquenil, probably only because my rheum is a real stickler and needed proof before making the call. Because my labs weren't revealing enough, he shipped me to a dermatopathologist who did a Lupus Band test---actually he did three, one new skin punch plus retesting of two older punches. Then both were happy. (I was less so. Got 5 stitches, no big deal, but the local numbing agent wore off halfway into my train ride home. )

If you take the Plaquenil, one thing to know: it's slow-building, it can take upwards of 4-6 months to reach its FULL effect. That's not say you wouldn't see "some" relief more quickly, only that a patient can't know for awhile how much it's helping.

In no way am I suggesting this isn't lupus, btw. More like, I can appreciate the difference between really strong findings vs less strong, and how that might affect your willingness to take a med... Perhaps follow-up appointments and labs will provide you with greater certainty? I hope so. Patients need that, I think, to convince them to take meds, to schedule follow-ups, to avoid UV (if necessary), etc. So I hope all that falls into place and puts your mind more at ease, one way or another. Also that you get more insight from your endocrinologist soon! Nice talking to you (but sorry for the reasons). Please keep us posted, OK? Sending hugs!

 
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Old 08-15-2016, 08:37 PM   #7
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Re: Hoping for a diagnosis soon - opinions much appreciated!

I'm having similar issues. My symptoms are recurring high fever, severe muscle joint pain, fatigue, and headache. I'm just starting the process in being diagnosed. I have an appointment with infectious disease dr. Would you suggest a ruemy would be better??? My bloodwork is right now just showing a high WBC. Would love any help!

 
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Old 08-23-2016, 04:24 AM   #8
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Megs, hi. Do you know WHAT tests were run in the set that showed only high WBC? If certain tests were included but came back negative, that may mean an AI isn't on the radar right now. But either way, a capable infectious disease doctor will be able to work thru what tests have/haven't been run, move on from there, then either keep you as his patient or refer you to another type of specialist. Please let us know what happens. Good luck!

 
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Old 08-23-2016, 10:06 AM   #9
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Hi Lisa,
In reviewing your issues of Extreme Fatigue, Joint Pain (worst in the hand wrist)
low grade fever (averages around 99.5), headaches, muscle weakness and brain fog, I need to tell you that these were all of the symptoms I had when I was suffering from Lyme disease. You said you were only on antibiotics for 2 months and felt worse. That clearly indicates to me that you needed to be on for a longer period of time. Those with lyme disease feel worse on antibiotics because the bacteria causing the lyme is being aggravated and for awhile you will feel much worse, before you actually feel any better. In my opinion you need to see a LLMD, or lyme literate doctor or return to the doctor that believed your symptoms were caused by recurring lyme. I was on antibiotics for close to 3 years until I finally felt human again. I too tested positive and then negative even though I felt horrible. Lyme tests only have a 30% accuracy....if you see a LLMD they will test your blood further and send it to a lab that tests for lyme more accurately then quest. And as far as getting pregnant please be aware that if you have lyme you can pass it on to the baby. I did just that, even though I was taking antibiotics for the duration of the pregnancy. Luckily my son's urine tests came back positive when he was 6 months old and he was treated for a year and a half. He is now 13 and has been completely fine. Please let me know if I can be of any help to you and I wish you all the best and hope you feel better very soon!!!!

 
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Old 08-23-2016, 01:35 PM   #10
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Sorry for the very delayed post everyone! It has been a CRAZY few weeks going through IVF. Daily morning egg monitoring at 6am was killer! And all the hormone injections have made me even more tired then usual. But had 2 little embryos transferred last thursday and now a 2 week wait to get the pregnancy test!

An update on me. I have since seen an endocrinologist and another rheumatologist for a second opinion. The endocrinologist believes I have subclinical Hashimotos (she did additional bloodwork and my thyroid levels are still in range for now) wants me to be tested every 3-4 months.

The second rheumy I had actually scheduled months ago (she had a very long wait) and I completely forgot I even had the appt! lol but when they called to confirm, i figured I would go to get a second opinion. She reviewed all my symtoms, history, family history and bloodwork and she believes I have lupus (she said mild, its def nothing advanced) She is sending me for another urinalysis-the other was from February-and testing my blood for a few other things (anti smith is the only one i can remember off the top of my head.) She wants me to speak with my fertility specialist about going on plaquenil also.

A few things that I never mentioned, my moms sister has Lupus and my dads sister had rheumatoid arthritis. I also get AWFUL night sweats...not sure how i forgot to mention that symptom bc i wake up every night having to change my shirt I also have a weird "rash" on my legs (its not a rash at all, thats why i never thought it was relevant...but don't know what else to call it lol) It looks like you can see my blood vessels when I am out in the sun. After 20 min or so my legs looks like they had red spider **** on them. I always just thought it was because I was pale, but the dr said this may be related. It goes away when I get out of the sun. Its not raised, doesn't itch or hurt....just looks weird. WIsh I could post a picture here...its much easier to see then to explain!

I'm still just overwhelmed by everything going on right now that its hard to wrap my head around what all the different drs are saying. The 2nd PCP, both rheumatologists and the endocrinologist all believe its something autoimmune bc even though the levels aren't high, i do have a bunch of different autoantiobodies that they all said were not normal to have. After my followup with the urinalysis and bloodwork, i'll sit down with my fertility specialist and see what they can recommend I guess.

Thank you Veej for always listening and responding to my posts!

 
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Old 08-23-2016, 01:53 PM   #11
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Hi Megs,

Did your PCP run just a CBC? Ask for a copy of your bloodwork to see what else you were tested for. My PCP started with a CBC, lyme disease test and an arthritis panel and we went from there. I was also inbetween seeing an infectious disease dr and rheumatologist, but since my ANA was positive, my new PCP referred me to a rheumatologist. I'm new to this board and to getting a diagnosis, so i don't have too much information yet, but I am very sympathetic to how you feel! Hope you feel better and get some answers soon!

 
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Old 08-23-2016, 02:20 PM   #12
LisaC1818
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Hi Anna,

Thanks for your advice. I'm just so skeptical on going on long term antibiotics. At one point about 5 years ago, I was going to see an LLMD, but they had a long wait, insurnace wasn't going to cover and it was EXPENSIVE. Also, I had a friend who had the same symptoms I did, saw an LLMD who clinically diagnosed him with with Lyme (negative lyme blood tests). Spent over 2 years on IV abx and tens of thousands of dollars, only for him to be told after 3 years of treatment (and not getting any better) that he can no longer help him and believes he has chronic fatigue syndrome. I get very nervous being clinically diagnosed for this reason...the dr can just never be sure if you have negative tests. I can't afford these expensive visits if I don't know for certain LD is what I have, esp with going through IVF. I guess i'm a person that needs to see proof before beginning treatments, bc i'm always hesitant about medications. Did you take doxycycline? IV or oral?

I'm glad you and your son are both doing better!

 
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Old 09-07-2016, 08:58 AM   #13
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Quote:
Originally Posted by LisaC1818 View Post
Hi Megs,

Did your PCP run just a CBC? Ask for a copy of your bloodwork to see what else you were tested for. My PCP started with a CBC, lyme disease test and an arthritis panel and we went from there. I was also inbetween seeing an infectious disease dr and rheumatologist, but since my ANA was positive, my new PCP referred me to a rheumatologist. I'm new to this board and to getting a diagnosis, so i don't have too much information yet, but I am very sympathetic to how you feel! Hope you feel better and get some answers soon!

 
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Old 09-07-2016, 09:01 AM   #14
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Thanks for the advice! I have an appointment with infectious disease on the 20th. My episodes are now about 3 weeks apart instead of 2-6. They happen same way every time. Extremely fatigue, 103 fever, headache and muscle pain. Only lasts 6-8 hours.

 
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Old 09-08-2016, 05:13 AM   #15
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Re: Hoping for a diagnosis soon - opinions much appreciated!

Lisa, wow, that's a big update! I hope things are progressing well with your embryo transplant---let us know, OK? Also, of course, how your follow-thrus with your endocrinologist and rheumatologist go.

Re odd non-rash lacelike appearance on your legs while in sun. There's a vascular (blood flow) disruption called livedo reticularis that comes to my mind: a red, lacelike mottled pattern. Does that description fit? Even if it doesn't fit, make sure your rheum knows about what you're seeing, OK---so that he can figure it out. Also, confirm that you were tested for APS (antiphospholipid syndrome). Last, ask if you should even be in the sun! (70% of people with lupus are photosensitive, meaning UV exacerbates symptoms & spurs production of unwanted autoantibodies.) I'm thinking that even if the rheum hasn't made a formal lupus dx, you should take all measures possible, especially now that you may be pregnant.

Looking forward to your updates!

 
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