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Avatar universal

Worry about alopecia. Hep C gone, but I still have cirrhosis.

Hi everybody,
I just repeat an information about my present condition at first.
I’m 49 years old man. In 2009 I was diagnosed with hepatitis C, genotype 3a, and a liver biopsy in June 2009 read as a histology activity index 12, scoring 3 points for portal inflammation,  three for piecemeal necrosis, two for lobular inflammation, and four for fibrosis. After treating with Pegasys and ribavirin which started in August 2009 and ended in December 2010(72 weeks) I obtained sustained viral response. I’m an alpha-1 antitrypsin  phenotype MS, an A1298C homozygote for methylenetetrahidrofolate reductase deficiency, hepatitis B surface antibody and core antibody positive, documenting acquired immunity to hepatitis B. A current platelet count is 106, white count 4.2, blood sugar 115, AST 51, and ALT 36 with an albumin of 4.5. In addition I have a leucopenia and thrombocytopenia, hyperlipidemia, positive PPD, atrial fibrillation.
My only medicines are Folbee and Lipitor. My doctor’s plan is to get an IL28B genotype and alpha fetoprotein and have me to return to him in six month after the recent appointment at the beginning of June 2011.
So, my worry is about face alopecia I have this moment. It started to evolve last June. Now there are several spots of alopecia on my face already and just one yet on the temple part of my head. I called to my doctor in August living voice mail.  The nurse called me back saying that I have to set an appointment with my primary physician or with a dermatologist to find an answer, Evidently, any physician wouldn't do anything unless he consult with my hepathologist in my case. However, I have no primary physician at all.
Any suggestions would be appreciated. Thanks  
6 Responses
419309 tn?1326506891
First of all, congratulations on your SVR... the fact that you cleared the hcv virus is a wonderful thing. Because you have existing cirrhosis, it may be contributing to your leucopenia and thrombocytopenia -- not unusual for folks who have cirrhosis -- but the fact that you also have alpha-1 antitrysin deficiency means you may continue to sustain damage to your liver.  Do you have a nutritionist or geneticist following your care as well?

I'm not sure what the rationale is of testing your IL28B geneotype at this point... did your doc explain why he's ordering that?  My understanding is that it's used primarily to assess possible response to treatment for hcv, which you've already completed, so I'm not sure what utility that serves, but perhaps your doc can clarify.  The AFP is important to measure for any person with cirrhosis, because of certain risks that increase significantly with Stage 4 liver diseases. You also mentioned that you are on Lipitor; it's important to manage your high cholesterol, but there are also other anti-cholesterol medications that could be less demanding of the liver, and it may be worthwhile to discuss other cholesterol medication options with your doctor.

Unfortunately, I do not have anything to contribute in regards to your alopecia; I not aware if there is a correlation between hair loss and any of your conditions, and sorry that I can't offer anything of value for that question.  However, being you have cirrhosis I hope you have had an endoscopy and regular imaging performed to rule out complications that can arise out of progressing liver disease.  Hope that helps some, and best of luck.~eureka
Avatar universal
Thanks for your valuable comments. I just want to tell you about my relations with my doctor in order to get your opinion what should I do.
I’d a treatment in two clinics. From the first of them I switched because I felt a great indifference to myself from my doctors and because I actually had at least three doctors and had never known with whom exactly I have next appointment. So, I switched this clinic after 26 weeks of treatment to another one. As to me a new doctor was just excellent. He was only one I had appointments with. He even suggested to me to have lab tests in Quest Diagnostics not in the clinic, because Quests’ equipment was much more precise. Nevertheless, after each appointment his nurse was drown my blood, because two times a year the doctor wanted me to sign a document that I agree to participate in his scientific study for free, with no benefits for me. It was stated in the document that they take my blood for their study needs at the same time when the regular blood test for my clinical purposes is taken only. However, I made the regular tests in Quest Diagnostics one week in prior of every appointment, so that another test made by clinic’s lab cost enormous money for my insurance, three times more than  the same Quest’ tests costs. So, at the beginning of this year, when I had to pay my deductible, I owed to the hospital about $1000. That is why I refused to sign another half a year agreement.  As a result, my doctor became very tough telling me that I’m cured and can go away if I don’t want to give my blood to the bank. He told me that he doesn’t care whether I’m able to afford the treatment. So, if I cannot, why I’m attending the clinic. Finally, he told me that they’ll find the cheapest way to treat me. Because the doctor has never explained to me my actual condition, I requested my clinical history to familiarize myself with how it is going with my health. However, it was surprising that my doctor shared all my treatment information with my previous doctor who works in the clinic I switched. Does he have such rights to do this?
That is a story. I called to the nurse recently about I have a problem with alopecia on my chin and even on one spot of my head, and about kind of eczema on my hands. The nurse called me back after about a week telling that I had better to ask my primary physician or dermatologist about these problems. It likely that any other doctors will send me back to my hepatologist in my case. Also, one doctor told me that taking a Heptral could be helpful for such kind patients like me. But my doctor does not want to communicate with me about alternative treatment, so I can’t prescribe this hepatoprotector to me by myself. All of these make me to think about switching the clinic again. I want to be sure I get a really comprehensive treatment. I want to communicate with my doctor. I want to be sure that there are real reasons for not to assign me in the liver transplant line: time is our life and anyway I can make a back up if I am in the line.
       So, should I switch this doctor asap? what would you say?
Thanks
419309 tn?1326506891
First of all, any doctor asking you to participate in any scientific study should either be reimbursing any costs incurred by you during the study, or providing testing for free.  Do you have a copy of the agreement that you signed when you agreed to participate? Any trial or study should outline as much, and if the clinic is charging you for blood draws related to this doctor's study, you should let the hospital know that to be the case.  Either they draw you free of charge, or the doctor should be reimbursing the hospital.  

It's very important that you familiarize yourself with your condition; it's a good idea to ask for doctors for all test results after every visit... especially if you're being billed for the services!  The rules of HIPAA (health privacy) protect you from having your health information shared with private individuals, but hospitals and doctors do share your information with each other if it is relevant at all to care and diagnosis.  By rights they should be receiving your consent, but a clause within the HIPAA laws (called TPO) does provide physicians the right to share medical information especially if they are cross-referred to each other.  By rights they are supposed to get your permission, but if you provide one doctor's name as a care provider to another doctor, by presentation it gives consent.

Whether or not to switch doctors is a very personal decision; however, if you do not feel well-served and comfortable in the care you are receiving, it's always good to investigate other options.  Because you are Stage 4, the best option for a medical provider would be a hepatologist at a Transplantation Center... a physician who could help coordinate your overall health in direct relation to your liver disease.  Do realize that your current condition almost mandates that any good doctor taking you on will want to obtain records from previous physicians; there are advantages to having a provider familiar with your history and condition when weighing the pros and cons, but above all you should feel trust and confidence in your physician.

I am not familiar with Heptral or hepatoprotector personally, but I have heard of Hepatopro, and you might find some useful information if you search the archives... I don't believe it requires a prescription, but perhaps someone more knowledgeable will chime in.  

As far as transplantation, only a center that performs them can assess and list you.  There are certain guidelines, and if you are a candidate, you must be abstinent from alchohol, be in reasonably good health (excluding your existing liver disease, of course), and go through a rigorous evaluation process that includes testing and psychological evaluations. Seeking transplantation does not necessarily mean you have to switch doctors, but you would need to be scheduled and seen by a facility that performs them and be evaluated by them, not just you doctor, unless your physician is aware of some pre-existing exluding factor in your history.
Avatar universal

i regressed cirrhosis by hepatitistechnologies products, it was quite advanced 16.3kpa with macronodules
after 18months fibrosis was 6.3kpa we are so surprised that we are hoping to see also nodules cleared by the end of the year, next scan end of october

if you like just follow me on hbv community and see results on me and other ptients.as hbv carriers we are just like hcv svr since our antivirals make hbvdna undetactable, we just cant stop them because hbv is integrated in human dna, but as long as we take antiviral is like having no virus for the liver

as you may  know making a virus und doesnt regress cirrhosis and when it does it is early cirrhosis and requires 6-10 years time

some research on hepatitis technologies is already available, the first is on kimeric mise with human livers, see link below, while human trial results will be presented at the int'l liver congress 2011 in san francisco

http://www.hepatitistechnologies.com/Posters2-4.pdf

one of our discussions on heptech to prevent fibrosis on those not treating the virus
http://www.medhelp.org/posts/Hepatitis-B/Benefits-of-HepTech-for-low-fibrosis-patient/show/1586846
446474 tn?1446351282
As far as IL28B. Since you have already treated you know how you respond to peg-INF and ribavirin, so the test has no purpose for you. By knowing what type of responder you were you can predict the chances of retreating.

It depends on your insurance company requirements if you need to have a primary doctor refer you to a dermatologist. In most cases hepatologist are difficult to get an appointment with. You should have another to see anyways should you experience complications from your cirrhosis. Most of us with cirrhosis also have a gastroenterologist we can see for minor issues.

Taking any vitamins or supplements without the knowledge of your hepatologist is dangerous. Any substance that is toxic to the liver and can advance your cirrhosis so you decompensate or can lead to liver failure. If your cirrhosis decompensates you will no longer be able to try retreatment. As you get older the progression of your liver disease will increase so you should try retreating in the near future.

Alpha-1 antitrysin deficiency can cause cirrhosis and lead to liver cancer so you need to treat both HCV and alpha-1 antitrysin deficiency (if it is affecting your liver) in order to not have your cirrhosis progress. As Eureka said you should be seeing a hepatologist at a liver transplant center as your case is very complicated.

Good luck.
Hector
Avatar universal
I appreciate to everyone who replied so fast. There is ton of information I was looking for. I just wondering how to find such doctor who will provide to me even a part of information you suggest me to know. As I told already, I paid $20 to order my medical record from the section of hepathology to be informed about my present condition.
However, I want to send a request for appointment to another clinic such as North Western Memorial Hospital, Chicago or University of Chicago Medical Center which both have a transplantation program. So, if you can advice me a certain physician in one of these medical centers, I'll be very appreciate as well.  
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