Positive ANA, all others negative

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

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!

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

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

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!

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

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.

Hey Katie????? Wondering how things went???? Blessings!