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Positive ANA but Doctor said I don't have Lupus - Now what?

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Old 08-05-2012, 02:21 PM   #1
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Positive ANA but Doctor said I don't have Lupus - Now what?

I have been having severe fatigue, anxiety, hair loss, heart palpitations, pain under left breast that feels like pleurisy, can't sleep, muscle aches, etc. so the doctor sent me for some bloodwork of which one was ANA. I tested positive but doctor said I don't have lupus. She didn't suggest further testing. Results were 1.80 AMA & 1:80 Low Titer.

How do they know if you have Lupus? What further tests are there? Sometimes, my legs and muscles are so weak, I feel like I'm going to fall. The fatigue is severe at times. I take multi vitamins, calcium, magnesium, B12, B Complex but they don't seem to help.

First of all, I'll say that I had a total thyroidectomy in July 2002 and have been on levothyroxine since then. I was on 88 mcg. for a long time but a few years ago, my TSH, etc. was up to 10 and my meds were increased to 100 mcg. I had a hard time with side affects with the increase such as anxiety, heart palpitations, the shakes, etc. I had to have bloodwork every month for a long time. My ENDO increased it to 112 mcg. & the side effects got worse so I have been on 100 mcg. and my bloodwork (TSH) was about 3.6 about a month ago.

My ENDO said it's not my thyroid and just ignores my symptoms. I've gone to two other ENDO's and they're concern is just the numbers not your symptoms.

Can anyone shed some light on this positive ANA? It's been on mind.

Thank you,

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Old 08-05-2012, 03:34 PM   #2
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Re: Positive ANA but Doctor said I don't have Lupus - Now what?

In view of your ANA result and symptoms, I believe your Dr is premature saying you don't have lupus. If you have had other tests, such as urine, CBC, chemistry panel, sed rate and CRP, those results would be helpful, as there are often clues on those tests. Is your Dr a rheumatologist? If you haven't had those other tests done, I would suggest getting them. Also, online you can find the diagnostic criteria for lupus from the Am. College of Rheum. It might help to review those and see where you stand. Some Drs ignore ANAs less than 1:160, but in view of symptoms, 1:80 shouldn't be ignored. The fatigue may be worse because of your thryoid being a bit undertreated. You might do better on a combo of T3, T4 like in Armour thyroid or Cytomel plus levothyroxine. Your TSH is still too high. I would talk to whichever endo you like the best about trying a T4,T3 combo to help raise your energy level. There is a new lupus test available that is more sensitive, called AVISE-SLE. I would consult with a rheumatologist and ask for that test if your diagnosis isn't clear without it.

Old 08-05-2012, 06:01 PM   #3
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Re: Positive ANA but Doctor said I don't have Lupus - Now what?

I'm sorry you're doctor doesn't seem to be listening to you, even though he is running tests, he's giving up too soon.
Also, with you taking levothyroxine, has your dr ever had you on any other thyroid replacement med? The generic levothyroxine, while working for a great many people, sometimes does not work for everyone, and some people have to have the 'real' (not generic) version of replacement/supplement meds like synthroid.
I asked to be put on levothyroxine because it was a lot cheaper than the name brand - synthroid - and within 6 weeks my TSH was almost at a 10, and I had almost every symptom you listed....felt like I was losin my mind sometimes, lol. My dr switched me back to synthroid, and within a short period of time I started feeling much better.

I agree with ladybud, in that your TSH test is still testing too high. I'm by no means speaking for every person out there with thyroid problems - but I function much more like a human being when my levels are aound 1.0.
It is your health, your money, and your right to ask for further testing and treatment, and if you don't get it - try another dr until you hit the jackpot with someone who actually treats you with listening to you, and not just taking the results that pop out on a piece of paper.
Best of luck to you hon.

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