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Posted 6/30/2012 9:30 PM (GMT 0)
I met with my Hepatologist for the first time on friday and have already recieved some good results.  The AlT and AST were slightly elevated according to her but still functional. I'm still awaiting the test results to rule out AIH. I feel hopeful after seeing these numbers but as my MD first suscepted AIH I have it in the back of my mind.

My ultrasound is scheduled, two weeks away. I just can't wait to get all this testing done so I finally know and can move forward from here. She said if I test postive for autoimmunity they will have to do a biopsy.

This is still kind of taking me by surprise. When I talked with my husband he went into his mode of thinking I was being a hyperchondriac and how Doctors take advantage of people with insurance that pays for all the testing. 

So I just need to vent a little bit.

If everything comes back fine, then great. I can deal with my Autoimmune thyroid disease.

Thanks for reading, all the input and feedback has been great.

 

Posted 6/30/2012 11:01 PM (GMT 0)
Chiccam, that's great that you are getting some results back. I guess you meant ALT? It certainly doesn't seem to me that unnecessary tests are being done or that you are a hypochondriac. Hubby needs to open his eyes and ears and maybe his heart.

Hugs,
Connie
Posted 7/4/2012 5:40 AM (GMT 0)
Yes I meant ALT.
I just found out tonight that I tested positive for anti-smooth muscle antigen. So I believe this is something associated with AIH?
My doctor is out this week so I have to wait on the next step. I'm anxious for
My ultrasound and I wonder if they will want a biopsy soon.
Posted 7/4/2012 5:44 AM (GMT 0)
It does sound like an autoimmune disease. I would imagine that they would want to do a liver biopsy soon, as it is the best way to determine just how damaged your liver is.

Please do keep us updated.

Hugs,
Connie
Posted 7/4/2012 7:17 AM (GMT 0)
Yes, testing positive for smooth muscle antibody is something that points to AIH (its the most common antibody seen in AIH I think - its certainly the one I tested positive for). Diagnosing AIH is a step by step process. The biopsy will indicate if you have other signs if AIH as well as show the level of damage. For most people the biopsy provides a definitive diagnosis. I was slightly different as my first biopsy did not absolutely confirm the diagnosis. So for several years I was classed as having 'probable AIH' (which is one step up from 'possible AIH' in the International Scoring system) but still received treatment. Indeed responding quickly to steroids was one of the indications my problem was AIH. The second biopsy some years later confirmed it for definite for me.

The ultrasound at this stage is mainly I think to possibly rule out other things such as bile duct problems rather than add significantly to the AIH diagnosis.

Ann
Posted 7/4/2012 4:32 PM (GMT 0)
Yep, I agree with Ann.  Sounds like you are leaning towards AIH.  A biopsy is the definitive diagnosis as AIH has different cellular changes than other diseases.  They'll also be able to see exactly how much damage you have.  Response to steroids is also a good indicator. 

The ultrasound is easy...it's like a massage on your belly turn .  It will show bile flow, if there are any masses and the size and shape of the liver.  All of that helps rule out or point to AIH depending on what they see.

Don't fear the biopsy.  I think stressing out about it is worse than the actual procedure.  Hubby will have to get on board if you have one as you'll need someone to bring you and drive you home. tongue

All these procedures will help you get the proper treatment to help keep you here longer!  So it's all a good thing!

Posted 7/9/2012 6:24 PM (GMT 0)
Chiccam.

I was terrified before my biopsy but it went ok.
Hope you´ll get the answers soon so they can start treatening it.

Good luck!
Posted 7/11/2012 2:33 AM (GMT 0)
So it looks like I tested positive for both ANA and SMA and my Dr. wants to do an Ultrasound guided biopsy.

Yes, I'm nervous. 

Dany why will my husband have to drive me?  Don't they do a local for that?

I've been a little loco turn myself with all of this going on and I'm not sure if he will be a good support person for me. I really hope I can go by myself as he isn't sure what all this means and still believes I'm being dramatic. I'm at the point where I rather not tell him whats going on because his lack of concern is stressing me out.

I'm so appreciative of this forum and everyones vast knowlegde and experience.

I've committed to being positive (even downloaded a postive affirmation ap that sends me texts) because honestly I've been getting depressed. Mainly because I'm changing in the way I act physically and socially and no one around me gets it. They think I'm lazy which drives me nuts! Family will make comments like, Are you going to just sit there? Are you in bed for the night? It makes me want to cry. Even worse I was intaking high amounts of caffiene to help with my energy, I still do but I'm feeling a little more peppy this week.

I still exercise in fact I'm doing a triathalon in 6 weeks (Olympic distance). My fatigue is getting in the way of training but I'm pushing through it.

I have a question about testing SMA positive. Does this start to effect other organs than the liver? Why does it go straight for the liver?

Posted 7/11/2012 3:37 AM (GMT 0)
Chic, they basically want someone with you in case there is a bleed or some other problem after biopsy, though they do keep you for awhile for observation. I was told I had to have someone with me, though not necessarily a driver if we took a cab...which we did. You are right--they give a local. I asked for and got Ativan prior to the biopsy, but only 1 mg, so I didn't feel that it helped with my anxiety at all. You will need to stay as still as you can for the rest of the day to avoid a possible bleed.

Would it be possible for your guy to attend a doctor appt. with you...maybe for f/u of the biopsy? Somebody is going to be needed for emotional support....a best friend, perhaps, or a relative.

I totally understand about people not really understanding your fatigue and not taking it seriously. I've been worn out from hep C since '91 and it has gotten worse since transplant. After all this time and the problems I've had, people are beginning to understand that I'm not well and REQUIRE a lot of sleep...and that I can't do the things I once did.

Hugs,
Connie
Posted 7/11/2012 7:17 AM (GMT 0)
The risk as Connie says is bleeding afterwards. The exact protocols vary from place to place but all will want you to lie down afterwards. Some people i know are allowed home after a couple of hours to continue their lie down at home but most places make you stay in and lie down for 6-8 hours. And it is very very boring!

I have had 3 biopsies - and I wasn't allowed to drive for 24 hours after each one - because of the bleeding risk. I have had one under sedation (complete waste of time for me and I wish I hadn't bothered) and after that they insisted I was accompanied home - other times I could make my own way so long as I didn't drive. My current hospital is about 100 miles away from me and they do insist I stay within 30 minutes of them overnight afterwards - just in case. And one time the biopsy was delayed so I didn't leave the hospital until 10pm so I got to my hotel about 10.30.

Do query when you can start training again. They usually tell you to 'take it easy' for a couple of days afterwards but when I checked it was OK to go on a gentle jog the next day they nearly fainted! So do ask them what they mean. They don't seem to expect active people!

If I can disagree with Connie (is that allowed?!?) if your husband doesn't want to have anything to do with this then my advice would be to let him be for now. I have never had anyone with me in all my visits to the doctors and never found it a problem. You will know what is best for you. My hubby drove me to an appointment once when I felt really ill but I left him in the waiting room! Personally I prefer to get all the information myself rather than have anyone else there and then I process it later - but then I am a control freak. My hubby still does a good job of denial - and for me its very helpful as it stops me feeling sorry for myself and get on with stuff. He also hates hospitals and the time he collected me after the biopsy and had to wait a couple of hours I was freaked out because he was freaked out!

Biopsies vary. Of my 3, one was a breeze, one was dreadful and one was just pretty dreadful. I did think about not posting about the possibility of it being painful but in the end decided I should warn you that sometimes it can hurt despite the local. Its the pressure sensation that seems to vary. But keep it in proportion - most people are fine. But I hate hate hate the boring bit lying down afterwards - so so tedious.

I am not aware of positive SMA affecting anything else.

Ann
Posted 7/11/2012 4:59 PM (GMT 0)
Hi Chic,

I do agree with Ann.  If your husband isn't supportive and you can either find someone else to drive you or swing a taxi if it isn't far from home, then that's your best bet.  When I had my biopsy, I was terribly ill and they were going to keep me a few days.  The hospital was right near my job (3 blocks) so I drove to work to leave my car and my boss dropped me at the hospital.  I responded to my steroids right away and the docs knew I wanted out the day after my biopsy as my daughter had a performance at school that night so they let me out early.  Had I known it would only be overnight, I would've just left my car at the hospital and taken care of all ot it alone.  It worked out and my boss picked me up the next day to get me back to my car.  No, I wasn't with my daughter's father, that's why he wasn't driving me tongue

SMA is a more specific antibody for AIH but it can also be seen in PBC patients.  Did they also test for AMA?  You'll know specifics after the biopsy but no, it is, for the most part, present in AIH.  Have they checked you for CMV and EBV (cytomegalovirus and Eppstein-Barr)?

Posted 7/11/2012 8:23 PM (GMT 0)
Ann, certainly you (and anyone else here) can feel free to disagree with me. Different points of view are good.

AIHer, the last biopsy I had was at Mayo. I was having difficulty finding someone to go with me and asked what would happen if I showed up alone. I was told that I would be sent home and the biopsy cancelled. They absolutely require that you have someone with you. This was true of several different appointments there.

Regarding the hubby, since he doesn't seem to believe Chic is ill, I think it would be a good idea to have him attend a doctor appt. with her and hear it from someone else's mouth. She definitely is going to need support if she goes through transplant, though it could be a friend or someone other than her husband.

The first time I had a biopsy, in '93 at a different facility, I had to stay still for 6 hours. They admitted me to "short stay." However, with the last biopsy, done at Mayo, I only had to stay for an hour in an area in Radiology.

Hugs,
Connie
Posted 7/11/2012 8:58 PM (GMT 0)
Connie

Ah I see where you are coming from now. Most docs are very upbeat about AIH so it may backfire as a tactic. Certainly mine told me to go out and live my life as normal and just take the tablets. I am not sure anyone with me would have been very convinced I was that ill!

By the way whilst I understand about the support needed for people undergoing transplant it is worth noting that very few people with AIH ever need transplants (I think I have read somewhere it is in the region of 3% perhaps very slightly higher) so I think you may be worrying Chic by mentioning that especially as she doesn't have a diagnosis yet!

The only other person I have heard of who was able to go home within such a short period after a biopsy was from Florida so perhaps you are just ahead of the game there! Certainly mine have all been a 6 hour bed rest in the short stay unit but after that I could just go so long as I didn't drive until the next day. That seems pretty standard for the vast majority of people I know who have had them. I would love to be released sooner and not have to lie there getting bored.

The only time I have been told they would send me home if I didn't have someone with me was if I wanted sedation for an endoscopy. I didn't want sedation anyway so it was fine. Had it done with just a local and was driving home within about 30 minutes of arriving.

Ann
Posted 7/11/2012 9:42 PM (GMT 0)
Ann, you are right about transplant in those with AIH. I recall Dany having posted about that once and that transplants are rare for those with AIH. Thanks for the reminder!

Hugs,
Connie
Posted 7/13/2012 1:48 AM (GMT 0)
You guys are great!
I tested NEG for AMA, and I haven't been tested for CMV or Epstein-Barr. Are there antibodies for SMA and ANA with either of those? I'll have to look again at symptoms. I think I looked them up earlier when searching for causes of what I was feeling and not really seeing a connection but I should look again.

Orginally the main reason my primary Doc thought AIH is because I have autoimmune Thyroid Disease. That's mean levels are normal but I have Thyroglubulin AB antibodies present. My Thyroid is in the process of failing.

Back to the Biopsy. I've been told that I will be sedated for an ultrasound guided liver biopsy and I have to have someone with me. So that question was answered. My case is actually being reviewed by the radiology dept prior to biopsy scheduling. Which is fine with me, only I kind of want to get this ball rolling.

I go in tomorrow for my first ultrasound of my liver. I tried to get out of this since I'll be having another one soon with the biopsy but it didn't work.

I've been feeling pretty good for the last week or so until now. Started towards the end of my work day. Body aches, tired and the low grade fever is back.
I'm so mad because I needed to work out and I wanted to play and now instead I'm in bed really hurting. I told my husband I was really hurting and he asked if I needed to go to the ER. HAhaha...ok so I have to be careful what I describe but I am hurting and I was told to not take anything because of the biopsy.
When it gets like this it feels very flu like with the body aches.
Does that go away once on meds?

Post Edited (chiccam) : 7/12/2012 7:51:46 PM (GMT-6)

Posted 7/13/2012 2:07 AM (GMT 0)
Hey, lucky you, being sedated! That's unusual.

I imagine they want the US prior to biopsy so they will not be surprised by anything at the time of biopsy; i.e., a mass or bile duct obstruction.

I've easily had a hundred different scans at Mayo in the past 6 yrs. There are times when I've had to be there 4 days a week for scans, consults, blood work, etc. Just take it one thing at a time and go with the flow.

Hugs,
Connie
Posted 7/13/2012 2:12 AM (GMT 0)
So being sedated is abnormal?
I'm a pretty tough cookie, but maybe it's just standard at this clinic.

Thanks Connie
Posted 7/13/2012 3:01 AM (GMT 0)
Chic,

With the positive ANA and SMA (and autoimmune thyroid), it's likely AIH but it's good to know if you have CMV and EBV hanging around.  They are viruses that will always live in you if you've had them.  They are very common.  I was CMV negative when I was diagnosed then a year later, I had horrible lower abdominal pain.  I went in and the doc thought maybe it was my appendix.  She did bloods and apparently, I was having a bout of hemolytic anemia.  So off to hematologist.  They rechecked for CMV and it was the culprit!  The hemolytic anemia resolved itself in a couple of weeks but the infectious disease doc they had sent me to said to just be aware that I have it as it affects the immunosuppressed differently than the healthy folks.

To answer your question...I felt miraculously better once on the pred and immunosuppressants.  My chills and fatigue left, I was able to eat, nausea gone and I felt human.  Then the pred side effects kicked in but all those went away too when I got down to 10mg.  Now I'm like anyone else tongue    I work fulltime, I'm a single mom, I workout regularly, I can dance the night away yeah

Posted 7/13/2012 3:56 AM (GMT 0)
Chiccam, most report that they are given an anti-anxiety med or tranquilizer, but not anesthesia or even conscious sedation. At my first biopsy in '93, they wouldn't allow me to take or be given anything whatsoever prior to biopsy. And it was not a pleasant experience.

Hugs,
Connie
Posted 7/13/2012 5:47 AM (GMT 0)
I felt much better very quickly once the meds started.

The protocol for biopsies varies from place to place. Some offer sedation as standard and others only offer it if you ask for it. My absolutely painless biopsy was without sedation but my really bad one was without sedation as well. Its just chance really I think. The actual medication used varies as well. At my last biopsy when I did have 'sedation' they explained it was in reality more of an amnesiac so I wouldn't remember anything (um I can .......). You need to be able to hold your breath when they tell you to which is why you can't be too sedated. But I know most people can't remember anything after having that med (its called midazolam I think) so its probably just me being weird.

The US at the biopsy is just to locate a place to take the sample from (the nearer the edge of the liver the less likelihood of bleeding - but they want to make sure they get a sample). The standard US is much more thorough and they do it in a darkened room so they can see the screen better. As well as looking at the shape of the liver and its consistency they will check the spleen, kidneys etc. They can also check the blood flow to a certain extent.

I too have positive antibodies against my thyroid so one of my thyroid readings is low but as my other readings are fine I was told that I didn't need to do anything as my body is compensating for it. I just get tested annually now.

Ann
Posted 7/13/2012 6:02 PM (GMT 0)
At MGH, every biopsy has been done under sedation. Kind of like the stuff they give you for a colonoscopy. I've had 2 done without anesthesia and one was bad, though it didn't hurt, just took forever. The other was done with ultrasound and was a piece of cake.
Posted 7/13/2012 6:58 PM (GMT 0)
I just started a new thread regarding biopsy alternatives.

David, I think you must have a high threshold for pain. Though "not bad" I'd never consider a bx "a piece of cake."

Hugs,
Connie
Posted 7/13/2012 8:01 PM (GMT 0)
Well I'm starting to question that the term sedation was used loosely. Maybe it's just an oral sedation to help with anxiety. I guess I'll find out soon enough once my case is finished being reviewed.

Dany- they may have tested me for CMV and EBV, they ran a ton of protein labs and anemia work that all came back NEG but I'll ask at my next visit. Good to hear that your life is good and "normal".

It's good to hear that you all responded to the Prednisone, I'm really not wanting that but at this point I'm more open for results.

Ann-Thanks for all the knowledge, I had to hold my breath much longer than anticipated today for my US. The sonographer should hold their breath at the same time so they know what they ask of us. What antibodies were present with your thyroid?

David-A piece of cake sounds easy peasy and I hope it will go that route.

Connie-I'll ck out the links provided on the next thread. I can't believe you've had a hundred scans? Seriously? When I went to the lab this morning I tried to put on a happy face just in case I become a regular.

No word yet on my case. I was told if there's been no contact for 2 weeks to call back...Hmmm I guess it's only been like 4 days.
Posted 7/13/2012 8:05 PM (GMT 0)
"I can't believe you've had a hundred scans? Seriously?"

Yes, seriously and literally. Mayo is very, very thorough. And with hep C, 2 liver tumors on separate occasions, a rt. lobectomy and then a liver transplant--they took tons of scans before, after, and even during.

Hugs,
Connie
Posted 7/13/2012 11:23 PM (GMT 0)
If you were to add up all of the CT scans, MRIs, x- rays, biopsies, colonoscopy's, endoscopy's and ultrasounds, I'm well over a 100, too. This past year, I've had 2 CT scans, 3 MRIs, a biopsy, 5 x-rays and a couple of ultrasounds. And this was a healthy year. My docs want me to have at least 2 MRIs a year. I'm trying to not do CT scans, as there's a tremendous amount of radiation from them.

As for pain from biopsies, the 2 where I wasn't sedated didn't hurt, but when they did the "take" it felt like a electric shock, and it wasn't in the vicinity of where the needle was. The experience did feel weird, though. My brother had a fair amount of pain with one of his biopsies and the other was painless.
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