Hi! I'm new to all this...recently diagnosed and need suggestions.
Hi everyone,
I'm newly diagnosed (about a year ago) with Hep C, haven't seen a hepatologist yet or GI so I have no real info about my liver status,viral loads or genotype...but I am very concerned.
First off, I need to ditch my Prim Care and get another. She looks at my liver enzyme levels and says " oh, they're a little high"...didn't think I needed a viral load check or even see a specialist.
Seems completely ignorant about this.
I've been very exhausted, anxious and depressed. I also have polycythemia vera and also the beginnings of <osteoporosis(!)> which really freaks me out. Does anyone know of a correlation between Hep C and BONE loss? I'm in my mid-forties and feel pretty devestated about this.
I'm in NYC and would really appreciate any info about in person support groups that anyone knows of..that'd be great.
Dealing with unsupportive MD's and HMO of course adds to the feeling of distress.
I'm taking Clonopin for my anxiety which adds to fatigue/depression and is most likely not terrific for my liver. I'm Doing about 1000mgs of Milk Thistle and green-juicing as well for the time being.
I've got to get serious about this and see a hepatologist and get my stats and a biopsy...It's better to face reality and at least know what's happening than to bury my head in the sand in denial. I am getting scared.
It's hard to know and differentiate what's "the depression" or the polycythemia or the long time sleep deprivation or the Hep C!
Suggestions are welcome. It feels a little better to reach out. My knowledge of all is this is vague and I feel a little intimidated by all of the technical expertise that many Hep C people seem to have.
Thanks!
Lost,
Bob
Hi Bob, Welcome! Hey, take it easy. If you learn anything from any of the support groups available online, you learn that this is not a death sentance. However, it is a good idea to find a good informed doctor who will support you and be honest with you. It is probably a good idea to get a viral load test done. If I were you, I would also get in my hand the results of my bloodwork to see for yourself where your levels are. I have copies of all my labs and get tested every three months because I'm treating myself alternatively. I was very fortunate to have had a 4th year resident when first diagnosed who took a very personal interest in my case. The gastro I had was a cut & died "Have the biopsy - go on treatment" kinda doc who told me I would lose my business on treatment because I would be too sick to work and that there was nothing else to be done other than take milk thistle. Well, he really ****ed me off and helped me to be stronger in my conviction that I would beat this without treatment.
Your decisions on how you treat are most certainly up to you. BUT - Be informed! We have a wealth of information at our fingertips here on the web. I have learned more in the last 1-1/2 years about health in general than in my whole life, and I feel that I am healthier than I have been in my whole life (except for maybe when I was a child).
I am of the opinion that the healthier our immune system and body in general, the better it can fight anything. The body was designed to heal itself. I haven't been sick in several years except for detox symptoms I went through when I first started some of the supplements I take. Diet is most important, as is water consumption. I went from being someone who ate mostly microwave meals and used artificial sweeteners to someone who reads every label and tries very hard not to ingest anything with additives and who also stays away from ANY kind of drugs except for the occasional Excedrin for a rare headache.
As far as the osteoporosis goes, I don't know if there's a connection. What I do know is that Calcium is certainly important. I take Calcium Hydroxyapatite with boron, D and magnesium. That is what a naturopath suggested, claiming that it is the most digestible form of calcium. I have also been told that Calcium Citrate is good.
I am sure there must be many support groups in NYC. I think if you just search Hepatitis C Support Groups you can find them. I live in western NJ, and we don't have any. I depend on my online friends for support and information, although I have been thinking about starting a group myself.
Well, I gotta get some work done today! Take care. Happy Easter! Love & Blessings, Karolyn
Yes, bone loss is reported in many liver diseases, there is even a name for it: hepatic osteodystrophy. But I am under the impression that it doesn't happen unless the liver was beyond the earliest stages of disease. That is, you are well advised to see a hepatologist and get a biopsy. You're gonna want to know whether you are in or past the earliest stages of fibrosis progression.
As I hope you have heard before now, Hep C is a slow moving disease, and there is almost certainly no hurry about most things with it. BUT, it does seem very wise to get the initial info in hand, and nothing is so valuable as a biopsy. (Oh, and a good communicative doc, yes. That was good advice. This virus has so many unknowns or partly-knowns, we want someone we can talk to about it all.)
By the way, what I've read suggests that the treatments for bone loss in hep cases are very like what is suggested for non-hep bone loss: vitamin D, (and K, for what reason I don't understand), calcium supplements and calcium rich foods like low-fat dairy and leafy veggies, resistance exercise, sometimes fossamax,and so on. Exactly what you may have heard recommended for postmenopausal women. The supplements recommnded by Kackles seem good--magnesium is good to take with calcium, for example--but you should do some of this research for yourself to see what you are most comfortable with. As you may know, tums and rolaids have also been used with some success, and they sure are cheap. And, a little goes a long way--a gram or two a day is a lot. Don't neglect your vitamins, tho!
In other words, hep-related bone loss is treated like any other bone loss--from what I've read, at any rate. I am not an expert. As I'm sure you know, there are no doctors on this board. So nothing we say or advise will substiture for you getting a gastroenterologist or hepatologist you can trust.
Thanks so much for your replies. I found them very encouraging.
Fatigue and depression are real problems with me. I do feel discouraged because I have alot going on, alot of med probs.
The depression which has gotten severe over the last year makes it difficult to feel hopeful and I rarely get a normal night's sleep.
So falling into a vicious cycle seems obvious in retrospect, but 'getting out' seems daunting. I've reluctantly tried most of the anti-depressants and the side effects always overwhelm me to the point of needing to stop just for relief from them.
Becoming dependent on doctors for 'understanding' or comfort is a predicable setup for dissapointment for me. I end up feeling resentful, disempowered and diminished.
But I keep going back compulsively for more and more thinking that the next guy will be less impersonal, patronizing or arrogant. "Take care of me!"
It Doesn't Work....I need to be gentle with myself and do what I need to do and not depend on 'them' for compassion...the thing they all seem to lack the most.
So tired. And it feels good to 'talk' to you guys and I thank both of you again. I'm going about things pretty much in isolation and that can exaggerate bad feelings.
Oh yeah...I'm pretty up on suppl. with Calcium, boron,K,Mag,silica,vit c, ibuflavone etc...
The rhematologist was really impatient with me..I guess I really can't expect anyone to really relate to how bad I feel about losing bone/height or to expect 'comfort' especially from clockwatching HMO Md's. But she refused to prescribe fosamax or any of the others, saying that my Osteopenia was too mild. Frustrated. Yet, I know i'm not absorbing food adequately.
Enough.
Thanks for the support!
Bob
Yeah, well I don't think we can look to docs for major compassion--they are not family members. What I most value is a doc who does not mind my stupid questions, who is patient and talkative and not condescending. I want info, and a willingness to work with me to help design my own course of health care.
Good on you for taking calcium and all. Don't neglect the vitamin D--or get lots of sunshine. And do look into weight lifting or other resistance exercise (like plyometrics) for bone health. Seems to make a meaningful difference. (Meanwhile, you'll be making yourself look like Arnold! Well, maybe not.)
Best of luck....and keep the faith. AS I'm sure you know, depression, sleep disorders, and exhaustion are among the very most common symptoms of hep c. It is a b...ch to cope with, but remember that its the bug not your psyche that is at the root of it, and this may help you get through.
Hi! I'm new to all this...recently diagnosed and need suggestions. 
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