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Something's up with my liver

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Posted 1/16/2012 10:12 AM (GMT 0)
I'm in my early 20s, female and for the past 5ish months my LFTs have been elevated (or deranged as my GP puts it). If it's relevant, I also have asthma, Celiac Disease (dx 5 years ago, well controlled) and some form of connective tissue lupus/sjogren's thing going on. I'm on Doxycycline, Plaquenil and Mobic. I don't drink any alcohol.

about a month ago I started developing new symptoms like extreme nausea, stomach pain, no appetite, vomiting, pain and throbbing under right rib, pain in right shoulder, fatigue, headache, no energy, itching and tonight my mother said I looked 'yellow'.

My second to last blood test showed-
Ferritin 381 (10-150).
ALT 101 (not sure of normal value)
AST 87 (not sure of normal value)

My last blood test my doctor said was "essentially the same, one enzyme had gone down a few numbers, the other had gone up". I'm having an ultrasound the week after next and got repeat LFT today. My GP thinks I have some sort of viral hepatitis and about 3 weeks ago said I should be better in a week-10 days (but I'm not!). My saturation test for hemochromatosis was normal. My mother thinks I was vaccinated against Hep A and Hep B.

My GP is only testing my LFTs and I feel like I'm waiting around, feeling sick and my blood tests aren't improving. She hasn't tested for HepA/B/C. I want some answers and to start feeling better.

Any suggestions would be greatly appreciated! Thanks.
Posted 1/16/2012 5:16 PM (GMT 0)
Hello paperbagprincesses,

Welcome to HealingWell!  Sorry to hear you are unwell.  I have Autoimmune Hepatitis.  Due to your autoimmune issues, I would speak to your doctor about testing you specifically for that.  There are some antibody tests (Anti-smooth muscle antibodies (ASMA), LKM-1, Anti-SLA, AMA (for Pimary Biliary Cirrhosis - PBC).  I would have wondered about hemochromatosis but I guess that's out!  So why isn't your GP running your viral serology to be sure it isn't Hep A, B or C?  The tests are out there so he/she shouldn't just be guessing.  Since you have shoulder pain, I'd also wonder about your gallbladder.

I would seriously consider getting a second opinion.

Posted 1/16/2012 10:36 PM (GMT 0)
Thanks Dany. I appreciate your reply. I wondered if autoimmune hepatitis might be possible, but I feel like a hypochondriac mentioning it. I know how rare it is and I just feel like it's probably not the case. My GP hasn't ordered even the Hep A, B, C tests so I don't know if she would (and if she even could) run all those other ones. I really thought hemochromatosis was possible because it fits my other symptoms, but apparently not. I just feel like 'why should a 22 year old female who doesn't drink, eats well and is of a healthy weight, have problems with her liver?'! I'm seeing a different GP tomorrow night and hopefully she'll know a bit more. Thanks again for taking the time to help me.
Posted 1/16/2012 11:13 PM (GMT 0)
Being 22 and living a "clean" sorta life doesn't matter...children get AIH.  It has nothing to do with lifestyle, weight or age.  I would press the issue of AIH.  It is common to have both AIH and celiac and since you have celiac....why isn't it possible to have AIH when they travel together a lot?  Have they not sorted out your "connective tissue/Sjogren's"?  I had been seeing a rheumatologist for 3 yrs prior to my AIH diagnosis.  I had elevated ANA and joint pain so they thought I had some kind of connective tissue issue but no other antibodies ever showed up.  Then I got sick; vomitting, extreme shivers, iced tea colored urine, became jaundiced...after 2 weeks of every other day blood work with checking every possible virus...my labs kept getting worse so my hepatologist was 98% sure it was AIH and I had a biopsy to confirm...now I'm medicated but perfectly fine.  So maybe it isn't a connective tissue thing at all....maybe it's AIH.  I'm not pushing you to have it as no one wants it smilewinkgrin   but if it is that, you need to make sure your liver isn't being severely attacked and that you control the disease.  It is a potentially fatal disease without treatment.

Luckily your labs aren't super high.  They generally only get really nervous when they are over 100.  Mine were AST 748, ALT 848 and by the time I was hospitalized for the biopsy, my bilirubin went up to 23.3...and I was no longer able to clot.  However, everyone responds differently.  You may still be causing enough damage to your liver so the sooner you get a grip on it, the better.  You want to avoid cirrhosis at all costs...that can't regenerate but fibrosis and lesser damage can.

I would ask your new GP for a referral to a hepatologist and if they won't let you see a hepatologist then ask to see a GI doc.

Posted 1/17/2012 12:17 AM (GMT 0)
I've read being a young female, you're in the most at risk of developing autoimmune hepatitis, so it is possible. But I'm just apprehensive because my mother went in to the doctors all guns blazing about it being hemochromatosis and it turned out it wasn't. The doctor wasn't very impressed that my mother had done all this research online and jumped to conclusions etc. And I'm really just hoping it's going to get better on its own!

They haven't sorted out my connective tissue stuff, my ANA is weakly positive (1:80) and I've had a bone scan that showed uptake in some joints. I'm on Plaquenil, Meloxicam and Doxycycline. All other blood tests have come back negative and they're not really concerned. I had read that some of the symptoms of AIH are similar to connective tissue diseases.

There's not much more I can do until my doctor's appointment tomorrow and hopefully my LFTs have gone down. They're still going to go ahead with the ultrasound regardless. If it is AIH will anything show up on the ultrasound?

Thanks Dany
Posted 1/17/2012 12:21 AM (GMT 0)
Princesses, normal ALT is 7-45 and normal AST is 8-43. My current values (with hep C and a new liver) are ALT 184 and AST 125.

Please do as Dany suggested. She really knows what she is talking about.

Hugs,
Connie
Posted 1/17/2012 12:31 AM (GMT 0)
I'm on a transplant forum and several young women there had liver failure with no warning. It could be something other than AIH, though that sounds more likely. Go to a hepatologist, forget a GP. Most GPs know little about liver disease. And, don't "hope it will go away." Find out what the problem is.
Posted 1/17/2012 3:18 AM (GMT 0)
Thanks everyone. I also don't think I mentioned I've lost 10kgs/22lbs in the past 6-8 weeks. It's also extremely painful to sleep on my stomach or left side.

I'm seeing a GP tomorrow and I'll just have to bite the bullet and ask to do something more about this and order at least the Hep A/B/C tests.

Thanks again.
Posted 1/17/2012 3:20 AM (GMT 0)
PBP, ask the GP for a referral to a hepatologist (liver specialist.) That's who you need to be seeing.

Good luck!

Hugs,
Connie
Posted 1/17/2012 3:33 AM (GMT 0)
I don't think we have a hepatologist where I live, she was talking about a gastroenterologist. She said two blood tests ago that if my LFT had gone up further she'd refer me to a gastroenterologist. Then she said they were essentially the same and she said to still go ahead with the ultrasound. At the time I was feeling 100% better so I was fine with waiting, but now I'm feeling sick again.
Posted 1/17/2012 3:45 AM (GMT 0)
PBP,

A GI doc is not a Hep

One handles general disgestive disorders and spends most of the time fussing with colonoscopies and the like. 

The other specializes in livers.

This is likely what you need.

We drive 2 hours+ every time we see Mike's Hep doc...and the trip is worth it.  No one here in town could handle it.  Our GI doc actually  fired him -- or more politely -- escalated his care to a major medical center as a transplant as likely needed to save his life.

Where are you?  Surely there is a university hospital somewhere in your state.  Look up transplant centers and there is where the good hep docs are.

Carol from Florida 

Posted 1/17/2012 4:14 AM (GMT 0)
I live in New Zealand and from what I can find, gastroenterologists seem to be the ones who look after it here. I'm sure if I get sent to gastroenterology and they can't help me they'll send me where they can. I live 5 hours away from the next city and I can't find any hepatologist there either. Thanks.
Posted 1/17/2012 4:22 AM (GMT 0)
PBP,

At minimum see a GI....don't assume there isn't a hepatologist nearby but a GI is still better than a GP.  Sorry if we all seem pushy but we've all been there.  The ultrasound will tell if there is anything grossly abnormal with your liver; eg, size, growths or if there's a blockage in your gallbladder which can also cause the symptoms you're having.  They'll also check your spleen and kidneys and if there's any fluid accumulating in your abdomen.  True diagnostic, aside from some additional blood tests, would be a biopsy.  Your best bet is to get to a specialist and get the additional lab work done..Hep A/B/C and then some antibody tests if those come back negative.  Also ask to have CMV and Eppstein-Barr checked. 

Good luck with the new GP tomorrow!

Posted 1/17/2012 4:31 AM (GMT 0)
The gastroentology department says it does liver biopsies and the private hospital has gastroenterologist who say they specialize in liver diseases. You don't seem pushy at all and I sincerely appreciate all your help, but I just don't want to overreact if this is just a viral thing. My GP said if it was viral hepatitis nothing would show up on the ultrasound. I've read the biopsy is quite invasive. I've had Hep B and C tested about 6 months ago and they were normal then, but so were my LFTs. My Epstein- Barr test always comes back saying there's been a recent infection, it has done since I was 15. Thanks again.
Posted 1/17/2012 5:25 AM (GMT 0)
"Just a virus"? There's no such thing if you're talking about viral hepatitis. It's serious.

A GI doc did my first biopsy in '93 and it was a bad experience. A radiologist at Mayo did it today and I felt little pain, and only for a few seconds. Big difference. A biopsy will give an accurate picture of what is going on.

Hugs,
Connie
Posted 1/17/2012 5:36 AM (GMT 0)
PBP,

I agree with Connie.  When dealing with the viruses that cause liver issues, none are "just a virus".  Even CMV which is seemingly an innocuous virus as it simply causes flu-like symptoms in the general population, in the immunocompromised it can wreak havoc on you.  In my case, I was CMV negative when diagnosed with AIH...then a year later I ended up with hemolytic anemia which ended up being caused by CMV (since I had apparently recently acquired it).  I understand your B & C were negative but maybe one is positve now or it's A...in any case, when your liver is inflamed, it's best to do all that's necessary to trackdown the offending issue.

Posted 1/17/2012 8:19 AM (GMT 0)
Thanks Dany, I guess I'm just worried about getting the right balance of being concerned and being over dramatic and I don't want to be either if there's no need to be. My uncle, who is a doctor but lives in a different city, rung a week after they told me it was viral hepatitis. He said "so is it Hep A or drug induced (from my arthritis drugs)?" and I said I didn't know if it was Hep A because they're not testing for it and wanted to know why not. So maybe I can take it from that angle? I just have a number of medical conditions and I have had doctors just give up because it's too complicated, so tell me nothings wrong because they don't want to look any further. It is possible that my Hep B and C could now be positive (although unlikely because I haven't been in any at risk environments), but it's worth checking I think. Thanks so much I'm going to try and get some answers tomorrow.
Posted 1/17/2012 1:21 PM (GMT 0)
http://hepatop.biopredictive.com/top/country/nz/

100 Top Hepatologiests in New Zealand

Posted 1/17/2012 3:44 PM (GMT 0)
Good work, ML!

I have blood work weekly and one of the things they always test for is CMV.

Hugs,
Connie
Posted 1/17/2012 4:43 PM (GMT 0)
PBP,

It could very well be drug-induced hepatitis from one of your other meds...the problem there is you'd have to discontinue to resolve the inflammation.  The other problem is that drug-induced hep can turn into AIH in those who are predisposed to autoimmune dysfunction...such as yourself.  So you aren't being overly dramatic in insisting they test you for very real possibilities...real and potentially fatal.  You are your own advocate.  Knowledge is power and if your doctor isn't willing to understand that you've done your homework and are essentially helping them resolve the problems by bringing up issues they may have not thought about having no expertise in the area, then hopefully this new doctor of yours will be willing to work on the puzzle idea

Keep us posted!!

Posted 1/17/2012 9:54 PM (GMT 0)
I am thinking much the same as most of the other people here...PBP, please see someone soon, and I agree, an ultrasound can let them know about gallstone, I also had an enhanced MRI(MRCP, no real prep needed for this, just like an ordinary scan, but I think you get a dye injection) and CAT scan, this THEN led to a surgical procedure (ERCP) that confirmed diagnosis...I tell you this, because I would insist of the MRCP and the CAT scan(easily done and can rule things in or out, and not all that invasive)

I agree with Dany...I was lucky to find out early what I have(I've got PSC), and I too was thinking that if you've got AI problems, you're a bit more likely to have other issues...

I was glad that my Dr. took me seriously, mostly it was the liver pain, because at this point, though my LFT's are somewhat wonky, they are not always so...but my liver is enlarged, and I have a LOT of pain...BTW, do you also have liver pain? (if so, this makes it more of a reason to see a specialist)
Posted 1/17/2012 10:04 PM (GMT 0)
Thank you so much everyone.

Mamalama, thanks for researching that, however only one of the doctors on that list appears to still be in New Zealand and he is in Auckland (other end of the country) and works in the transplant unit. So I'm not sure if that'll be possible.

Dany, they (my rheumatologist and GP) don't seem to think it's drug induced because of the medication I'm on and the doses I take. I did go off them for about 10 days when they were trying to work out what was going on and I couldn't manage with my joints. Plaquenil is a very low risk liver drug, Mobic is slightly higher, but I'm on a low dose. I don't know about doxycycline. I guess all I can do now is asking this GP and ask him/her to do some more testing. It does seem stupid that she would just assume it's viral but not order any tests to confirm that. I'll let you all know how it goes tonight!

Becoming undone, thank you for your help. Unfortunately the wait time for an MRI where I live is 8 months, I'm not sure about the cat scan. The ultrasound took 1 month. I do have liver pain, below my right rib. It's a dull ache with very occasional stabbing.

Thanks.
Posted 1/17/2012 11:31 PM (GMT 0)
PBP, see if you can get scheduled for a CT scan with contrast. Should be less of a wait than an MRI.

Hugs,
Connie
Posted 1/18/2012 6:31 AM (GMT 0)
I just got back from my appointment, my doctor was lovely. She's testing for Hep A, B C and CMV as well as CRP, CBC, LFTs. My AST and ALT have come down to the normal level, my GGT (I think that's what it's called) is still up, although I didn't know it was up originally. She is glad the ultrasound is being ordered. I asked her about autoimmune hepatitis and she said that it is quite rare and she wanted to first rule out the more common conditions first. Thanks everyone for all your help.
Posted 1/18/2012 2:38 PM (GMT 0)
PBP,

Sounds like the new doc is a keeper! smilewinkgrin

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