Positive ANA, all others negative

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prayingtogetbetter
New Member


Date Joined Jul 2008
Total Posts : 11
   Posted 7/8/2008 8:29 PM (GMT -7)   
I'm so confused, and rather upset at my doctor.
I had went to her after trying to figure out my symptoms over the past three years (dizziness, fatigue, and newly muscle aches that almost burn)...I'd bounced doctors and found out a few different things.
1. I had RAI in the past for graves disease, now I've got hashi's- I've got the antibodies confirmed over saliva testing (most docs dont even believe in testing for antibodies.
2. Adrenal Fatigue. My cortisol level is always low throughout the day, and that has given way to my hypoglycemia and hormonal imbalances.
And now, going to this new primary care doc (after moving areas) I present her with my newest symptoms...this burning arm pain.
The only thing I've done different is up my thyroid meds and add vit c 3,000mg daily and b12 lozenges. I figured the upping the thyroid meds was good because my TSH was going through the roof on recent blood tests(shortly after I raised dosages). Anyway, so these burning arm pains...they take me into the ER one night and my TSH level was WAY up (hypo), as well as my calcium and potassium level were slightly low. They dismissed this, told me to take a multi vitamin and sent me on my way. Well, this new primary took a slew of labs, and one was ANA, she said it was positive with a whole pattern. I have GOT to get my hands on these test results,I'm going to call up there and bug them again tommorrow to find them.
But then, the rest of the antibodie tests were negative (Anti DNA, JO, RNP, SM,SS-B). Im so confused. She's calling this Lupus and is trying to push the plaquinal on me without a confirm diagnosis.
Now, I know some of you like this drug, but Im not about to take anything I don't really need, if that turns out to be the case.
Can you interpret lab tests, if I post them on here?
I know I've got multi-ple deficiencies which docs are seemingly ignoring, I have a dead or half dead thyroid from the graves disease, could this be all it is?? Or is Lupus a possiblilty?
I don't have flares...just overall symptoms. Right after I take my thyroid meds, I usually get the spacey medicine head feeling. Whenever I walk around I get dizzy after ten minutes, and overall fatigue. Never had a rash, or any real serious spell. My periods are severly dehabilitating for me...but this doctor doesn't believe in fixing my hormonal problem..simply take birth control and asprin. IM not taking birth control, ya know..too many risks.
Please advise... Im 24. And its been 3 years since these symptoms started...I just want answers and some doctor to take me under their wing and help me. It's been a month and I still havent gotten an appointment for a Rhuemy.
Thanks a ton. Sorry so long.
Katie

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/8/2008 9:07 PM (GMT -7)   
(((Katie))))) I'm sorry you're having so much trouble! I can understand that you don't want to take any meds that you don't need. You really really need to see a rheumatologist! I'm sure that's not news to you. I think alot of people with lupus do have a history of thyroid and hormone problems. I did many years prior to being diagnosed with lupus. I wish I had some answers for you. I do not that you do not have to have positive blood work to have lupus, again, i'm living proof! Good luck to you. Someone will be along shortly with some better advice and answers for you. There's really sharp people in this forum! God Bless You, Judy

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/9/2008 2:11 AM (GMT -7)   
Hi Katie,

So sorry your are having such a hard time right now. You are right, you need to see a rheumatologist. It DOES take months to get your first appointment. Has your doctor referred you? Sometimes its good to wait to take meds until you've had your first appointment with the rheumy. Not saying you should suffer in between, but some meds can level out the blood work and hide disease. Do you need a referral to a rheumy? Also, make sure the rheumy you chose is experienced with Lupus, if that's what you think you have. There is a link in my signature to find your local Lupus Chapter. They can give you a list of Rheumies in your area.

You might also want to consider an endocrinologist if your TSH is "through the roof". If you have hashi's and high TSH, I would want an endo running the show. This can be tricky because its not just reading the TSH, there are other blood markers that help them get your meds right and assess the health of your thyroid. Your thyroid 'can' cause all the symptoms you mentioned, so you'll want to get that right before adding other meds.

When you say that you upped your thyroid meds . . . did you mean that your doctor told you to up them? Or you are taking more than prescribed? Please make sure you don't take more of these litter buggers than a doctor has recommended. The thyroid is SOoooooo tricky. If you are off on that one, it can make your whole body go wonkers.

Are you taking your thyroid meds at least an hour before you eat? Even toothpaste can interfere with their absorption. My mom was taking hers incorrectly and her PC doc kept upping the dose and she had weird symptoms. As we talked about it, I realized that she wasn't taking the pill an hour before eating. When she started taking it correctly, the dose went down and the weird symptoms disappeared. Just a thought.

If you post lab test results, you'll also need to post the normal ranges that came from that lab. Each lab can be different. There is a good website where you can check out labs: Labtestsonline.org

Best advice: Your Primary Care doc needs to refer you to a rheumy. This is not an easy disease to dx and you don't want this label if it doesn't fit.

Glad you found us.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


joinery
Regular Member


Date Joined Oct 2007
Total Posts : 323
   Posted 7/9/2008 4:37 AM (GMT -7)   
Hello Kati welcome.. I'm sorry that you are dealing with this and not knowing if you have lupus. Judy and Rosie are right you need to see a rheumy do you have a date set to see one, it does take awhile. I'm on synthorid. I take mine in the moring. Take care
Debbie
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Reglan,Protonix,Synthroid,Plaquenil,Quinacrine,Flexeril,Zetia,Zoloft,Xnanx,Celebrex,Abuterol,  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     
 
 
 
 


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 7/9/2008 7:33 AM (GMT -7)   
Hello and welcome, my rheumy told me that plaquenil was the first drug to start because it has almost no side affects and is even safe to take during pregnancy and nursing. (I had to give up nursing and was told not to get pregnant while on Imuran). It also takes a very, very long time to start woking. The sooner you start it, the sooner it may start to help. (((((Kati))))) and good luck.








0

Jennifer

Diagnostic Limbo: Seeing Rheumy since November 07, Taking plaquenil, Imuran, Neurontin, Claritin, Zantac, vitamin D, Darvocet.

 

 


prayingtogetbetter
New Member


Date Joined Jul 2008
Total Posts : 11
   Posted 7/9/2008 8:35 AM (GMT -7)   

Anyone there?

 

Thanks a ton

Katie


prayingtogetbetter
New Member


Date Joined Jul 2008
Total Posts : 11
   Posted 7/9/2008 8:46 AM (GMT -7)   
Ooops, my server was slow. Dis regard that last message. I didnt think anyone replied yet.
Yes, I need to get to a Rheumy. I'm getting seriously upset with my doctor about getting me referred to one. I've got the state insurance, so I've got to have a referrall.
ANyway, with the thyroid meds...yes my doc had upped them. I've been researching a lot about thyroid (www.stopthethyroidmadness.com) and there is so much that endo's will blow off. The last one I saw said that it doesn't matter if you've got antibodies...Ye, okay?!
I had a really bad one who rushed me into the RAI and diagnosed me with graves simply based on my TSH and T4 level, they never even tested for graves antibodies back then. I was under emense stress and just had a baby, so it was probably thyroiditis, not even graves...and now that my thyroid was killed (or 1/2 killed and dying off the rest of the way)...its formed the antibodies that resemble hashi's. Or, it was hashi's all along. The rest of my family had hypothyroidism, so it was weird that I ended up with graves...if I could prove it...I would sue the pants off that endo. He actuallly yelled at me in his office after telling him how I went to see a more alternative/hormonal doctor and didnt bring the test results. I started crying in his office and never saw him again.
Yes, I think that when our bodies get so run down (aka not enough thyroid or low adrenals) all sorts of diseases and such arise. Next will be cancer, ya know.
I should be getting my blood test results here soon, and will post them. I pushed to get them all, because I want to know the basis of her diagnosis.
Thanks a ton for replying.
Medicine is great in someways...but terribal at the fact that they ONLY (well at least the docs I've had) try and MASK the symptoms...when they should be finding the underline cause and fixing it (deficiencies, hormonal imbalances, etc.) I have to say Im getting completely fed up with doctors and how everytime you go you walk out with three new prescriptions...They spoon feed you meds so they get the reimbursement for them. When, really...people need to fix their levels and they would probably feel ten times better.
Thanks again, I'll talk to you later

cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/10/2008 8:48 PM (GMT -7)   
Katie--
Did you get a TB test ever? You can get one at the health department, if they haven't done one. If you are positive I would talk to your doc about this. I have polyendocrine problems with hyper/hypopigment and hashis and adrenal insufficiency and other glands messed up. I also have scoliosis/kyphosis in my spine. There are certain conditions that put you in a risk for extrapulmonary TB, which can act like any other infection and sort of responds to antibiotics but doesn't really go all the way away. Anyway, polyendocrine problems can be very severe and I would follow up, beginning with a tb test if so many other things come out normal. The docs told me that latent TB causes the ANA to be high because it is your immune system keeping the infection in check. It's one thing to rule out early, because early treatment is important. It's hard to get even good endocrinologists to take the polyendocrine deficiency syndrome seriously, but it can be unnecessarily very dangerous if untreated, so I understand your concern. My Mayo endocrinologist learned I tested positive for TB and recommended treatment, not only because TB used to be the cause for up to 90% of adrenal deficiency/Addisons and is making a comeback, but also because if you have tested positive for tb and need steroids for endocrine supplementation, the TB can come back. So treating someone with TB who takes steroids reduces a public health risk.

I hope you can find a good endocrinologist. Once Mayo is done with me, if that day ever comes, I plan to see a highly rated MD who does natural hormones in my area. I got her off a patient referral/rating site and she got very good reviews. My female endos have been better for me, seeming to understand the female health problems, though there are always those that don't have problems so they think we are just whiners, and it that case it may be worth it to change.

Let me know what happens and if you have any questions about anything I mentioned that doesn't fit in the topic here, let me know and we can talk offline about it.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/11/2008 12:57 AM (GMT -7)   
Katie,

No doctor gets rewarded for prescribing synthroid or plaquenil . . . they are both sold in generic form and have been around forever.

Be careful about reading a book and self-medicating. (Not saying thats what you are doing . . . but the book really has put an unrealistic scare into some.) A friend of mine recently did a real nose-dive emotionally and physically. Come to find out, she thought she had read a book about thyroid/adrenal function and thought should be "eating her way well". She started taking vitamins and supplements in an effort to get off of synthroid and she stopped taking the syntrhoid. What devastating results. Long story short, she's been back on it for just a couple weeks and is her old fun self again.

There is a real balance in medicine and attitude is a huge part of that balance. If you are really skeptical about doctors in general you will be poisoned from getting the best help from them. Those of us who use alternative medicine to compliment our health care should always include that in our list of rx meds, otc meds and vitamin supplements. . . and give a current list at each doctor appointment. It really IS horribly important that they know exactly what you are taking.

It is a real delicate balance in all we do with this auto-immune stuff . . . You are doing a really good thing by researching and learning all you can.

I hope you get hooked up with a really good rheumy who will help you get all this figured out.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Post Edited (AlwaysRosie) : 7/11/2008 2:40:39 AM (GMT-6)


prayingtogetbetter
New Member


Date Joined Jul 2008
Total Posts : 11
   Posted 7/12/2008 7:59 PM (GMT -7)   
Oh yes, I would never go off my meds, Im just frustrated because it seems that doctors keep blowing me off. Even this new one, in the other day for a follow up four weeks later from the positive ANA, I mentioend how Im having symptoms of hypoglycemia (waking up in the middle of the night at the exact same time having to eat something, shaky if I dont eat every two hours, etc), and she blew it off. Said this could be your thyroid.
I just want to get to the Rhuemy, get some answers...IF they are understanding in diagnosing autoimmune diseases, Im thinking with my results, it could just be that of the Hashi's. WEll, hoping.
Thanks a ton
Katie

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 7/12/2008 8:16 PM (GMT -7)   
Hi Katie:

I'm sorry that you're getting the blow off by your doctors. I hate to say this but it's common for lupus patients to go through several Rheumys before they find one to treat you. I've had lupus for 20 years and it took them 13 years before I got an official DX of lupus. So, the past 7 years my doctors have been treating my lupus.

The C3, C4, and CH 50 are complements that doctors use to gauge our lupus activity. Rheumy's also look are our Sed rate and C reative protein (CRP) these tests show how much inflammation is going on in the body. Not all Rheumys use it, but it's a good guide. My Rheumy pays very close attention to my CRP, usually when I'm having terrible joint pain my Sed rate or CRP is elevated. I've noticed the higer my prednisone is the less joint pain I have, of course, taking high doses of steroids isn't good for a person. I'm on a fairly low dose of pred and I have to say I'm miserable. So maybe if you start on a low dose of pred and the plaquenil you may begin to feel better. I hope your get your referral soon and that your Rheumy is a good one and you are satisfied with them.


Best of luck to you,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/13/2008 9:08 AM (GMT -7)   
Katie, have you had a recent TB test? You can get one at the health dept or docs office. I ask because I have the same issues as you do and have gone to Mayo and they believe that some of it may be a result of a TB infection in my youth that was never properly treated. I'm on a course of special antibiotics and have read that much of the damage may reverse. My ANA is constantly elevated. I never cough when it's active, I don't even know. Outside the lungs, it particularly likes to destroy the endocrine system and spine, assisting in diabetes/hypoglycemia/liver disease/arthritis, where it may slowly fester due to lack of oxygen vs. in the lungs where infection becomes more dramatic.

Marji
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


prayingtogetbetter
New Member


Date Joined Jul 2008
Total Posts : 11
   Posted 7/15/2008 4:25 PM (GMT -7)   
Thank you all.
I cannot wait for this appointment.
I called myself to rush things along. They said they are booking into Sept but shed put me on the cancellation list.

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 7/15/2008 5:41 PM (GMT -7)   
Great Katie!!

I hope you like the new doctor and start to get things figured out.

Keep us posted!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/8/2008 7:45 PM (GMT -7)   
Hey Katie?????

Wondering how things went????

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

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