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Old 12-27-2009, 04:56 AM   #1
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madeleena668 HB User
Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

Can you have autoimmune hepatitis and lupus? I am so confused!
My ANA positive 1:2560
SM AB titer positive 1:360
creatine 1.3
tsh 160
sgot ast 87
sgpt/alt 151
Cardiolipin IGG AB 19 low positive
CARDIOLIPIN IGM AB 16 low positive
MICROSOMAL AB EQUIV'L
SJOGRENS A/SSAAB 1.1 POSITIVE
RNP NEG
THYROGLOBULIN AB NEG
DNA AB NATIVE 18 NORMAL RANGE
LUPUS ANTICOAGULANT EVALUATION
TCT 15.6 LOW
CPK 860, to 1600within a few days, back down to 820.

I was diagnosed with Hysimotos thyroiditis about 15 yrs ago, 3 months ago my TSH was within the normal range, but sky rocketed to 160 a few weeks back.
Within the last 2 or so months I have started gaining weight, feeling bloated, forgetful, joint aches and pains, feet and thumb skin hardening, facial edema, abd pain, shortness of breath, extreme muscle weakness in the upper legs, and arms. My Dr checked my Vitamin D which was low, placed me on 50,000mg supplements once a week, re checked my labs for that after 8 weeks and they were lower than when I started the supplements.
I have been to a cardiologist, endocrinologist, rheumetologist, gastroenterologist. The Rheumetologist ordered the above labs but will not return my calls to review the results. I know with the holidays all are busy, but I am just wondering what is going on, and what all the lab results mean. I signed a release to get my labs and have been going over internet style the results. There are to many questions.
My liver ultrasound report said my liver is extremely dense.
CT abd/Pevlis was basically neg except for a fatty liver, and athrosclerosis of the abd aorta
I have atelectisis in both lung bases. I am way to young to have all these symptoms.
The GI Dr thought my body was not absorbing the synthroid or vitamin D.
The Endocrin Dr put me on 2.0 synthroid and 5mcg of cytomel which seems to be helping and the Rheumotoligist put me on 20mg of predisone.

So many questions????? If I do have lupus do I get liver biopsies to check for muscle damage? Can it all be related to the thyroid and I don't have lupus?
Any comments would be greatly appreciated. The waiting is drivng me crazy!

 
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Old 12-27-2009, 04:58 AM   #2
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madeleena668 HB User
Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

When you finally get a diagnosis where do you go from there?

 
Old 12-27-2009, 12:24 PM   #3
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Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

Has any one checked for sjogrens? They missed it on me and it can cause a multitude of symptoms. Ask your immunologist. I did not have the ususal signs but it did major organ damage before they found it. Its an odd disease. Not just a simple one for many. Good luck.
Gcb in pgh

 
Old 12-27-2009, 02:17 PM   #4
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Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

they did the following lab test: SJOGRENS A/SSAAB and it came back positive. I am calling the rheumotologist tomorrow to hopefully go over the results. What type of organ damage can be done? I have the dense liver. Is this all lupus or different diseases?

 
Old 12-27-2009, 06:53 PM   #5
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Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

Quote:
Originally Posted by madeleena668 View Post
they did the following lab test: SJOGRENS A/SSAAB and it came back positive. I am calling the rheumatologist tomorrow to hopefully go over the results. What type of organ damage can be done? I have the dense liver. Is this all lupus or different diseases?
No, I have primary sjogrens. Unfortunately, it has attacked my liver.
I have autoimmune hepatitis and lung problems. Sjogrens attacks your moisture glands throughout the body. Most people have dental issues ( I don't) but I do have esophagus dryness, eye dryness ( always thought it was allergies) I have complained for years on various symptoms, constant Bronchitis, extreme fatigue... But it was missed. I had many blood tests done and always my liver enzymes were high. I was told I had a fatty liver. That's all that was said.

Lupus and sjogrens are in the autoimmune family. You need to google them to learn. I am not sure what a dense liver might be. Google it or just go to John Hopkins and search. They seem to have the most information on autoimmune diseases. That's been my experience.

Not one doctor did anything for me for years. I was too dumb to know to insist. I got really sick in 2007. Even then I had to insist on them finding what was really wrong. That was when my pcp did the blood work for sjogrens. The first immunologist got all my previous blood work and found my liver enzyme tests were high for years. He sent me to my first liver doctor, he did a liver biopsy, came back full advanced cirrhosis. I rarely drank, no drugs, no smoking etc. So read, read, read.

Make sure you go to good websites. John Hopkins, National Health Institute etc. Not Joe's medical advice. Read this website but keep it in perspective.
Learn and remember you don't have everything on the website. Keep a journal. Even if its a yellow tablet. Date it. And change doctors if you know they are vague and not helping you. It took me 2 years and 4 doctors to find a good immunologist. Your doctor should have had a fellowship listed in their education. Doctors websites are usually listed at the hospital they serve. Same with a good liver doctor. Don't think there is a good pcp out there....so do your best. Make them give you medicine. Look up what you have and what are the treatments. Don't wait.

It its autoimmune hepatitis as mine is from the sjogrens it must be treated. Good luck. And don't be shy. If they talk over you tell them they need to bring it down so you understand. I do it all the time...just smile when you say it...You will be okay. Be your own advocate.
Gcb in Pgh

 
Old 12-28-2009, 01:54 PM   #6
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Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

I got the call from the Dr's office about the above labs. The "nurse" said to take an aspirin a day for my clotting problem.
I asked about the sjogrens being positive and was told...oh thats just dry eyes and mouth. I asked about the Autoimmune hepatitis with my SM AB titer positive at at 1:320. She said she didnt know anything about that. I was told my ANA was high because when I came in 8 months ago I had arthritis in my fingers. WHAT??? An ANA of 2560. She couldn't answer any questions and when I asked to speak to the Doctor she said he was out of town until next week. I am sure he never looked at the labs and she was just winging it.
I am even more frustrated than before. Can you have a positive Smooth muscle AB titer because of your Thyroid issues?
I am not looking for a disease, just answers.

 
Old 12-28-2009, 02:57 PM   #7
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gcbpgh HB User
Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

Quote:
Originally Posted by madeleena668 View Post
I got the call from the Dr's office about the above labs. The "nurse" said to take an aspirin a day for my clotting problem.
I asked about the sjogrens being positive and was told...oh thats just dry eyes and mouth. I asked about the Autoimmune hepatitis with my SM AB titer positive at at 1:320. She said she didnt know anything about that. I was told my ANA was high because when I came in 8 months ago I had arthritis in my fingers. WHAT??? An ANA of 2560. She couldn't answer any questions and when I asked to speak to the Doctor she said he was out of town until next week. I am sure he never looked at the labs and she was just winging it.
I am even more frustrated than before. Can you have a positive Smooth muscle AB titer because of your Thyroid issues?
I am not looking for a disease, just answers.

 
Old 12-28-2009, 03:42 PM   #8
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gcbpgh HB User
Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

Have you looked up each single item that you have on google or gone to John Hopkins to search them one at a time. Then you write down what applies to you. What I see that you have implies from what I read that you have possibly autoimmune hepatitis. You definitely have sjogrens and while most people think its just dry eyes, they need to educate themselves. I am a prime example.

Did they tell you that with SJogrens you had to see an opthamologist. I have had tubes in both my eyes. You can lose your sight if you don't take care of the sjogrens. That's extreme but its untreated. What are they doing for the sjogrens? They don't know anything about it. They only know the general rheumy stuff. You need a better specialist. Now.

Sjogrens can damage major organs. You also already have an autoimmune disease. You need to just google Sjogrens and read....don't read only the first few lines....type in SJogrens, autoimmune hepatitis....lots of articles will come up. But understand you must do the work. If you think the nurse or the doctor is going to do it, you won't get any help. They know the least. You have to find another doctor who knows. I had to insist on my last medicine. They acted as though I had years to wait to be treated. You don't. Look it up.

What part of the country are you living? You will have to search for a better doctor. Oh, and they don't call you anymore. I can't answer why maybe its too much. I think our health care system is inferior. You need to do the work. The only people who think its great are the ones who haven't been ill and needed the doctors. Now start looking on line and let me know what you learn and put your numbers in one at a time. Write it down. Look for a better immunologist. You also will need a liver doctor. That would be a gastriologist that also is a hepatologist. (not sure on the spelling) That's a liver specialist.

Next year you will be smarter and then you will get better. Start looking up on your own...I am bossy because I have been right where you are and I have cried and then I fought for myself....you can too. Keep in touch. I am still learning.....
Gcb in Pgh

 
Old 12-28-2009, 03:59 PM   #9
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emstar HB User
Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

Are you wanting to know how to be tested for Autoimmune Hepatitis? Positive SMA and ANA is fairly conclusive, as I am aware, for Autoimmune Hepatitis. I have Autoimmune Hepatitis and had it finally confirmed with Liver biopsy. But I am rare in that I am not positive for SMA or ANAor LKA.
Good luck on the prednisone. It is nearly sending me crazy!


Quote:
Originally Posted by madeleena668 View Post
Can you have autoimmune hepatitis and lupus? I am so confused!
My ANA positive 1:2560
SM AB titer positive 1:360
creatine 1.3
tsh 160
sgot ast 87
sgpt/alt 151
Cardiolipin IGG AB 19 low positive
CARDIOLIPIN IGM AB 16 low positive
MICROSOMAL AB EQUIV'L
SJOGRENS A/SSAAB 1.1 POSITIVE
RNP NEG
THYROGLOBULIN AB NEG
DNA AB NATIVE 18 NORMAL RANGE
LUPUS ANTICOAGULANT EVALUATION
TCT 15.6 LOW
CPK 860, to 1600within a few days, back down to 820.

I was diagnosed with Hysimotos thyroiditis about 15 yrs ago, 3 months ago my TSH was within the normal range, but sky rocketed to 160 a few weeks back.
Within the last 2 or so months I have started gaining weight, feeling bloated, forgetful, joint aches and pains, feet and thumb skin hardening, facial edema, abd pain, shortness of breath, extreme muscle weakness in the upper legs, and arms. My Dr checked my Vitamin D which was low, placed me on 50,000mg supplements once a week, re checked my labs for that after 8 weeks and they were lower than when I started the supplements.
I have been to a cardiologist, endocrinologist, rheumetologist, gastroenterologist. The Rheumetologist ordered the above labs but will not return my calls to review the results. I know with the holidays all are busy, but I am just wondering what is going on, and what all the lab results mean. I signed a release to get my labs and have been going over internet style the results. There are to many questions.
My liver ultrasound report said my liver is extremely dense.
CT abd/Pevlis was basically neg except for a fatty liver, and athrosclerosis of the abd aorta
I have atelectisis in both lung bases. I am way to young to have all these symptoms.
The GI Dr thought my body was not absorbing the synthroid or vitamin D.
The Endocrin Dr put me on 2.0 synthroid and 5mcg of cytomel which seems to be helping and the Rheumotoligist put me on 20mg of predisone.

So many questions????? If I do have lupus do I get liver biopsies to check for muscle damage? Can it all be related to the thyroid and I don't have lupus?
Any comments would be greatly appreciated. The waiting is drivng me crazy!

 
Old 12-28-2009, 04:00 PM   #10
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madeleena668 HB User
Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

Thanks, I live near Duke Medicine and am going to check into someone there. I do have a Duke Gastroenterologist that I will follow up with the liver. I made an appt with my PCP for Thursday to come up with a plan. She is also a newer Duke doctor that is not afraid to dig. The Rheumy doctor is old and the only one in town. He was annoyed that I even came to him. He said " the endocrinologist should be following your Thyroid not me" I told him I came to him because of the ANA being high and they werent sure why after 15 yrs on thyroid meds my body wasn't absorbing it or the Vitamin D I was taking.
I have worked in health care for years and am aware of how things can be. I agree with you about the diseases. As far as the sjorgens The nurse didnt say for me to do anything about it..." it's only dry eyes and mouth"
Thats all that was said.
I am on my way to the John Hopkins site to look up the diseases.
Ill let you know what happens! Thanks for your support!

 
Old 12-28-2009, 04:03 PM   #11
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madeleena668 HB User
Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

I think I need to call the GI Dr back and see what should be done from here. Thats on the list for tomorrow.

 
Old 12-28-2009, 06:36 PM   #12
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gcbpgh HB User
Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

Keep reading....I am a nag.....its how I learned....then you need to find a good rheumy, one that will work with the liver doctor.....its not an overnight thing. Right now I am on Cellcept. Its really helping. They tried 3 other meds first and all made me sick. I can't take prednisone. You have a lot of information and support here.
It will be okay. Look up your GI's education....check his website.....you need the best... Take care and read.....
Gcb in Pgh

 
Old 12-29-2009, 04:28 PM   #13
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madeleena668 HB User
Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

My GI Dr is in the group with a physician who's Clinical Interests are:
General Gastroenterology and hepatology, autoimmune diseases of the gastrointestinal tract (autoimmune hepatitis, primary biliary cirrhosis, celiac disease)
I think this is a good match! Something positive.
I also have an appointment with a new Rheumy on the 12th.

 
Old 12-29-2009, 05:01 PM   #14
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gcbpgh HB User
Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

That great....now should they not meet your standards (duh, whats sjogrens) or sjogrens has nothing to do with anything here without any extensive blood work then you need to shop again.....frustrating but eventually you will find the one that will know.....don't forget to write things down....questions you may have for the doctor...and keep reading. New year, new attitude....Happy New Year.....
Gcb in Pgh

 
Old 12-29-2009, 05:58 PM   #15
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madeleena668 HB User
Re: Newbie needs help + SM AB & ANA Autoimmune Hepatitis? Lupus?

Have you heard of the LUPUS ANTICOAGULANT EVALUATION my level was low.
I was also curious about the:
SJOGRENS A/SSA AB
Reference
SJOGRENS A/SSA AB *1.1 U
-- REFERENCE VALUE --
<1.0 (Negative)
> or =1.0 (Positive)
It's positive along with my ANA being 1:2560, does this mean I could have sjorgens?
Do you know what this means? MICROSOMAL AB
Reference
MICROSOMAL AB *EQUIV'L
Reference Range
***************
Negative - No detectable Anti-Microsomal antibody.
Equivocal- Samples that remain equivocal after repeat
testing should be retested by an alternative method.
Positive - Indicates presence of detectable Anti-Microsomal
antibody.
Thanks for your help!

 
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