What questions do I ask my new doc.high ATF.

[jem195507]

I am new to this site and not really sure how to use all the functions. I have completed hep c treatment in Jan 2013 and was ud post 6mts. and was not scheduled until the end of Jan 214 for my 12 mt follow up, but because of some problems I am scheduled for a GI doc apt Dec. 5th.  All my labs were pretty much in range at post 6 mts except my ATF(?), but was told that I have F4 cirrhosis when I started my treatment journey. At my last appointment with my  infectious disease doc he made a very strange statement to me. He stated that he wanted to put me on vit B12 shots and 50,000 IU vit D per week to keep prevent me from getting cancer. My infectious disease doc has left for a new post and I feel like I am starting all over.

I am trying to have all my questions written down when I go to the new doc. Any advice will be welcomed...jem

[jem195507]

Thanks for all the information. I think I meant AFP not ATF. Can I blame that on HE :-) You both have given me a lot of information that I am going to demand answers for. I for too long have trusted docs to be upfront with me. Your honesty is refreshing. I will keep you both updated. Thanks...jem

[HectorSF]

First since you had and have cirrhosis you must see a hepatologist to receive proper treatment. Should you have liver cancer only a multidisciplinary team of doctors can manage liver cancer. No GI or any single doctor can diagnosis, determine treatment or treat liver cancer. Only a team of doctors working together can manage cirrhosis and its complications. Even though you are cured of hepatitis C you still have cirrhosis of the liver. Depending on how advanced your cirrhosis is will determine how much of your liver disease is reversible and how long it will take for your liver to heal itself.

Since you had/have cirrhosis you are at a higher risk for hepatocellular carcinoma (HCC) commonly called liver cancer. You should be having surveillance done every 6 months using ultrasound and an alpha-fetoprotein (AFP) blood test. This is the standard protocol for detecting liver cancer early when it is still treatable. Note: Liver cancer like many cancers have no symptoms until it is very advanced. At that point it is not curable and is fatal.

"My skin is burning and I am very tired all the time"
Skin burning? Is not a symptoms of liver disease.
Being tired all the time is a common symptoms of many conditions and diseases including cirrhosis so no conclusions can be drawn from wither of these. And as I said above HCC/liver cancer has no symptoms during most of its life.

You say your AFP level is out of range. What is the number? One of your doctors should have told you that it is not uncommon for persons with cirrhosis from hepatitis C to have higher than normal AFP levels. AFP can be higher in people with inflammation of the liver not only HCC/liver cancer. Also not all tumors generate AFP (only 60%) so the AFP test is not used alone to diagnose HCC. It must be combined with an imagining test such as an ultrasound, CT or MRI. HCC is diagnosed normally using a CT scan or MRI. A rapidly escalating AFP level in the hundreds is typical of HCC, not an AFP of less than 100 ng/ml. Only a hepatologist will know these details and can correctly diagnosis by using proper testing whether someone has or doesn't have hepatocellular carcinoma (HCC).

That your infectious disease doc said he stated that he wanted to put you on vit B12 shots and 50,000 IU vit D per week to prevent you from getting cancer is frightening. It Indicate that he know nothing about cancer and you should be glad to be rid of him as improperly treated liver cancer or any cancer can potentially be fatal. That doctor shouldn't be treating anyone.

While the chances of you having HCC are now lower because you have cured your hepatitis C. Now it is important to have proper surveillance continued for the foreseeable future. A hepatologist knows all this and will monitor you to make sure that you have no complications from your cirrhosis whether it is HCC or something else.

Emory Healthcare
Emory University Hospital campus
1365 Clifton Road
Atlanta, GA 30322
Has 8 hepatologists. Patients at Emory receive care from a multidisciplinary team of experts that includes surgeons, hepatology (liver) and gastrointestinal (GI) specialists, oncologists, radiologists and pathologists.
For information on their services for people with liver disease call 404-778-5301 Monday through Friday from 8 a.m. to 5 p.m. EST

Good luck.
Hector

[Advocate1955]

I don't think it is likely to be the Hep C that caused your physical symptoms of discomfort after eating, burning skin, and fatigue, especially since you have obtained SVR and don't have Hep C any longer.  It is more likely to be related to your Cirrhosis or possibly other digestive problems linked to your Cirrhosis.  A gastroenterologist can definitely start the process, but he/she should refer you to and communicate with/work with a hepatologist because of your Cirrhosis.
By the way, here is a link to the answer that Randy wrote to your other post in sevettes' (Shelley's) thread:
http://www.medhelp.org/posts/Cirrhosis-of-the-Liver/Ammonia-Level-Question/show/1970438#post_9605766

Advocate1955

[jem195507]

Advocate,
Thanks for the reply. I live in GA and only know of one hepatologist listed. I think you suggestion to have my gastro doc proceed in very good. I am going to request that he refer me to a hepatologist. I wish my infectious disease (IF) and gastro docs had referred me to one last year. Every time I eat I become very uncomfortable. My skin is burning and I am very tired all the time. I know that the hep can cause all kinds of long term problems even after treatment, but I am getting very concerns about some of my new and on going problems. My IF doc never really was willing to talk about these things. I guess that's enough whining for today...jem

[Advocate1955]

Hi jem,
Welcome to the Cirrhosis of the Liver forum.  First, congratulations on treating your Hep C and clearing it!  I can't answer your question about what questions to ask, regarding AFP, B12, and vit D or other follow up regarding your liver, but I'm sure that someone else with more knowledge or experience in those specific concerns will come along shortly.
Your doctor is probably concerned that you may have or may develop HCC, liver cancer.  People with Cirrhosis are at a higher risk for developing liver cancer, which is why they need to be monitored closely, even after clearing Hep C.  So, while the Hep C virus has stopped damaging your liver, your Cirrhosis already had you in a high risk category for liver cancer.  I think the most important piece of advice I can give you is that you should be seeing a hepatologist rather than a gastroenterologist because of your Cirrhosis.  I think you probably should be monitored every 6 - 12 months, have imaging (ultrasounds or CT scans) and bloodwork at those intervals, and monitored for signs of decompensation (liver starting to not work well) and liver cancer.  I think you should keep this initial appointment with the gastroenterologist to get answers as to what's going on right now and do some of the lab work and imaging, but I think it would be best if you ask for a referral to a hepatologist to follow up.  Hepatologists are usually found in large, university based hospitals with research facilities and transplant centers, so you may or may not have access to one close to you, but a hepatologist is a specialist in the liver, and is the best person to manage your care since you have Cirrhosis.  Sometimes a hepatologist can also coordinate care through a gastroenterologist who is closer to where you live.
I also recommend that you make copies of all of your records related to your liver:  recent labs, recent imaging, recent reports, etc. to bring along with you to your new doctor.
Have you had a recent colonoscopy and a recent endoscopy?  If so, he/she would probably like to see those reports as well.
Hang tight and wait for others with Cirrhosis and liver cancer to post on your thread.  They will be able to answer much more knowledgeably than I can.  Hopefully they can also provide you with some suggestions for a list of questions.
Advocate1955