Hep C Discussion Forum

Penelope PePod · Senior Member

RE: Results; now sad and confused

coolheat · Senior Member

Hi, everyone who has commented on this page has valid points about your Doctor observations. I was just able to talk to Lucinda Porter, a Hep C Maven, and she was able to give me names of Dr.s and groups in our area. Also, found out that Stanford has a liver transplant hospital in Sacramento now. I will be sending her reports of mine and she is going to look at them as well. I believe her website is www.hepmag.com . Very kind and knowledgeable. She is even aware of my Dr.. Thanks you all for all of your caring and concern and excellent suggestions. Matt Chris I am being cognoscente of my disc, noticed it seems to like it when I move around more than when I sit. Mike, can't imagine what you what went through with your back. Tough man you are. Thanks again, will keep you posted on Dr. pursuit. Great info. from everyone. biggrin Marsha

-- Edited by coolheat on Wednesday 21st of October 2015 09:47:22 PM

basser · Senior Member

have got to give blood nxt month.have got an ultasound coming up as well.will ask for a copy of what the readouts show about the blood results are.thanks for bringing this subject up martha.

coolheat · Senior Member

Basser, glad this thread is helping you too. I understand a lot more now myself. Mr. Groupergetter, so you traded scales for bark. I am having with help a yard sale this weekend. Going slow, but noticed today more flexibility and less pain. You are on to something by keeping moving as well. I see where the pool work with the PT man will keep me moving too, without the weight of body so much. Have a "call" to Lucinda and will as for a referral to someone she suggests. For all of you who do or have someone who does art, it does lift the soul to better states of consciousness. Have a paint or drawing party without judgment. Glad we are all here, thanks for being there, Marsha

basser · Senior Member

am getting a bit confused myself over the issue of cirrhosis myself now.these posts have shone a different light on my idea of cirrhosis.have just gone along with what the drs say.have a few more questions to ask.am so glad for this forum things come up that i would never have thought of.thankyou all

Penelope PePod · Senior Member

Marsha,

It's a roller coaster ride, for sure. So much conflicting information. Have you been able to start searching for a new doctor? I know you've got a lot going on these days, but this too shall pass with time. Keep your chin up and remember how many people you have behind you.

Penny

mallani · Guru

Hi Marsha,

Yes, that's the important bit. The Ludwig-Batts classification is old, and most now use the Metavir system.

Basically, there's no difference in the Fibrosis grading. F3-4 is not cirrhosis, and no regenerative nodules were seen, which is the hallmark of cirrhosis.

Inflammation of 3-4 equates to Metavir A4, which is a lot of inflammation.

Your doctor sounds like an idiot. I was F3-4 in 1998 and progressed to F4 in 2008. After SVR, I certainly don't need a transplant.

I am sure your next VL will be Undetected so don't worry. Cheers.

Cinnamon Girl · Guru

Thanks for posting this, Marsha, this is the important information.

Just a quick comment... it shows that you haven`t got cirrhosis, and you`re certainly nowhere near needing a liver transplant. This is quite clear, it says...`Areas of the biopsy approach, but fall short of, the features of fully established cirrhosis`.

I just don`t understand why your doctor has given you so much conflicting and confusing information,, so much of what he`s said just doesn`t add up. I really think you need to get a replacement doctor as soon as you can, and make sure they are experienced in treating Hep C.

I`m sure Malcolm or others will want to comment in more detail. Try not to worry!

coolheat · Senior Member

Hi Malcom, think this is what you are referring to. When this biopsy came back; Dr. told me that if Harvoni didn't work I would need a liver transplant. He said that I could not be any closer to cirrhosis than I am. He said that I needed to follow protocol tightly and pray as a large part of my liver was dead. He also said the first blood test that I had (4 wks) after starting tx, was undetectable. He told my husband and I both. I had my first (4wk) blood test at EOT and he told me that I had failed treatment. (My GP told me that the second blood test was the same as the 1st VL test, that both were detectable.) Gastro Dr. said that he called Gilead to let them know that I had failed tx. Jokingly I ask him about the (pink pill), and laughed saying it was probably out of the question now, as its warnings are that you shouldn't take with hepatic dysfunction. {He told me I could take it, as there never was a problem with my liver, that it is functionally normally.} I ask how it could be after what he told me about needing a liver transplant if tx failed. He still said there is nothing wrong with my liver it is functionally normally and always has. This confuses me. So this attch. is the reading of the biopsy. Should there be more? Thank you for making this more clear to me. Has felt like a roller coaster. I do feel that this Dr. has his own issues and I would feel more comfortable with another Dr.; I am in the process of doing that now. Thanks, Marsha Also, its funny because allium or albium is the one test he keeps saying is so important for inflammation.

-- Edited by coolheat on Wednesday 14th of October 2015 09:06:03 PM

mallani · Guru

Marsha,

The ALT, AST and GGT are very good markers of liver cell injury (and inflammation). With your levels, there's not much going on in your liver, so I would be very optimistic.

Albumin has nothing to do with inflammation. Cheers.

coolheat · Senior Member

Got it Malcom, called and will pick up the results paper in am. anything else I should ask for from my file? Thanks, Marsha

mallani · Guru

Marsha,

What you have posted is just the description of the biopsy procedure. We need the findings- do you have another page to the report?

coolheat · Senior Member

Hi, this piece of paper might be what you are referring to Tig.

Tig · Admin

Marsha,

I wanted to add that your biopsy does state the findings of an echogenic and heterogenous liver without mass. What we generally refer to here on the forum are the Metavir scores. Inflammation (Activity) A 0-4 and Fibrosis F 0-4. I see that mentioned nowhere on your report. Malcolm may be able to interpret this report more accurately. If you see my score listed in my signature, you'll see my last biopsy was A 2 and F 3. Here's a link describing it.

http://hepatitis.about.com/od/diagnosis/a/Metavir.htm

bubble · Senior Member

Marsha: "Dead liver" wordage should have never been used. Did he explain regeneration to you? He does not sound very dedicated. My Hepatologist told me my next stage, what he will monitor, and what tests he will be doing and what he will be looking for. Gastro's only go so far. Not to say their not highly trained pro's. Find a hospital that has a Liver center branch. Check the net and go for their ratings. I think this got botched. I went from an MD, 2 gastro's, and am on my 2nd Hepatologist. You just know when you have chosen the right Doc. I am sure you dont think your done. Stay educated, stay informed. If there is anything ya cant stand is a Doc. that cant answer you questions or refuses. Your reports are contradicting your condition. Pehaps you could be a 24 month canidate. My Doc has had no failures with Vikera Pac. Good Luck to you!

Tig · Admin

Marsha,

You need to get a new doctor and forget this guy existed. Your lab work is excellent, of course your platelets are low and the TIBC is unchanged, but that's something you were aware of. The platelets aren't so low that you should be overly concerned in my opinion. Your ALT and AST are perfect. Were you the midst of a relapse, I believe those numbers would be elevated and they aren't. The biopsy doesn't have any findings listed, just that you went through a successful percutaneous needle biopsy. The pathology report is where the actual results are explained. As Malcolm mentioned, scarring doesn't mean dead liver, put that nonsense out of your mind. Your doctor should review his bedside manner and an A&P refresher...

Nothing stands out to me that would indicate a reason to suspect a relapse. The first thing that occurs is an elevation in those enzymes (typically) and it hasn't happened. You should stay positive and get that EOT +12 viral load done.

coolheat · Senior Member

Thank you for more information. Dr. said that I could have another EOT viral test 6 mo. after EOT. I demanded a 3 mo. test, which will be beginning to mid Nov.. He also told me that F3-4 was as close to cirrhosis as I could get and that I had a lot of dead liver. He said that where F4 was found it meant that, that liver portion was dead. He also told me that Liver Dr.'s, which he is a gastro man, do not look so much at alt or ast, but however look at the inflammation tests like albumin. By my asking questions about all this; he told me I was combative and basically disrespectful to him. I posted, hope I can get these small, Tig help if I can't, the biopsy, my latest blood test (4 wks post EOT) and a 4/9/15 TIBC #. In May the TIBC # was tested and it hadn't changed. Haven't been tested for that since. The tests are being done thru Dignity Health, VL tests are done in Stockton, Ca.. All your words are encouraging.This Dr. said that after the 6 mo. test, if virus is back up I can look at starting another protocol. Hopefully by then will have another Dr..

mallani · Guru

Hi Marsha,

Detected means Detected so you still have some virus but the amount is below the quantification level (in your case, less than 12 i.u./ml). You need a 12 week test to see if this changes. Others have been Detected at 4 weeks post, and gone on to SVR.

If this is a relapse, your ALT and AST should be elevated.

You are F3-4, which is not cirrhosis. You do not have 'dead' liver, just some scarring. It's unfortunate some doctors don't like questions. May I ask how the F3-4 diagnosis was made? Was it by biopsy or Fibroscan?

Your hip is a different matter. I hope it improves.

Try not to worry, and good luck for the 12 week VL. Cheers.

Groupergetter · Guru

Hi Marsha, hope you are doing ok. This test still reads odd to me. Perhaps Malcolm will share his thoughts? If you don't mind my asking, which lab performed the test? Is the doctor planning to do additional testing at 12 weeks? I would definitely request/demand this

Usually folks "detected" at 4 weeks post eot have more elevated levels. When I relapsed on the Sovaldi/Olysio at 4 weeks post eot my quantitative levels were in thousands. Is the doctor you are seeing a liver specialist? If he/she is has a clue, they would WANT to see your 12 week labs. Hope this works out for the best, keeping you in prayer.

Marsha, I also had increased hip, joint, tendon, arthritic problems while on tx. I bought a gel foam mattress pad on Amazon that did seem to help the hip. Still using it. I frequently had tendonitis in my elbows but this has improved post tx. I found that doing even minimal exercising (walking) helped me. The more I was in bed, the worse it seemed to be. Wishing you well.

Sorry, second edit. From the CDC:

Testing for HCV infection begins with either a rapid or a laboratory-conducted assay for HCV antibody in blood (Figure). A nonreactive HCV antibody result indicates no HCV antibody detected. A reactive result indicates one of the following: 1) current HCV infection, 2) past HCV infection that has resolved, or 3) false positivity. A reactive result should be followed by NAT for HCV RNA. If HCV RNA is detected, that indicates current HCV infection. If HCV RNA is not detected, that indicates either past, resolved HCV infection, or false HCV antibody positivity You should talk with your doc. Sorry you're having to deal with this. NAT= Nucleic acid testing

Sorry if I am further confusing things, been a long day working with chainsaw and splitting firewood. Just want this to be ok for Marsha.

-- Edited by Groupergetter on Tuesday 13th of October 2015 02:01:17 AM

-- Edited by Groupergetter on Tuesday 13th of October 2015 02:43:59 AM

-- Edited by Groupergetter on Tuesday 13th of October 2015 04:17:40 AM

-- Edited by Groupergetter on Tuesday 13th of October 2015 04:55:33 AM

coolheat · Senior Member

Yes, thank you all. Jaded, Penny, Mike, Tig, Jill, Gracie. So good to know you are all well and doing well. Yes, you're soothing words are most helpful. Penny, my hip is still not too good. Am going to physical therapy 2 times a wk.. Says it appears to be some syndrome that developed. I know that it developed in my last mo. of tx. It is quite painful. He is addressing 5 different areas. Funny, I might go 3 days without much pain and then it comes back as if I never had any therapy. x-rays said osteoarth. and P.T. says some bone at the top of L femur, but mostly mucesle's and tendons, legaments. Did your pain go away? I will just sit back and enjoy my continued ride on the train. Anxious to hear about all of you. Thanks, Marsha

-- Edited by coolheat on Tuesday 13th of October 2015 01:31:42 AM

Jaded · Senior Member

That was great info Trig 56 in that link!

Hang in there coolheat...

This is from the end of that article post by Trig56...I'm sure your read.

There were five people in SYNERGY and seven in ERADICATE (HARVONI) who still had detectable HCV RNA at the end of treatment, and all achieved SVR12. The negative predictive value of week 4 viral load was less than 13%. Looking at people with HCV RNA >LLOQ at week 4 and at the end of treatment, a majority achieved SVR12...

You have such a tiny minuscule amount of virus now in your body...you will beat this.

Penelope PePod · Senior Member

Hi Marsha,

I'm glad you posted. Like the others have said, things still seem odd, but all will be proved with time. And there's so much new stuff in the pipeline, so if it's not now, it WILL be next time.

How are things going with your hip? Know that I've been praying for you.

Penny

wmlj1960 · Moderator

This still smells fishy to me and it can still turn out that you go on to SVR, but if not it's only a setback. When I failed treatment I wasn't happy, but I knew a better medicine with better results was in my future. Some of this is out of your control but as Jill said, you certainly can help by continuing to take care of yourself, with proper diet and hydration, what exercise you can comfortably do, and I agree about a different Dr. too. Don't give up Marsha. There is a solution. smile

coolheat · Senior Member

Thanks Tig, this is a good read. Like that they may have identified a hidden effect that after 6 weeks the new replicating viruses could be non-infectious. To have an effect of replacing a working replication complex with a defective replication complex. Love it, am rolling in it. I missed the forum. Past ghosts were circling slowly and whispering negative words..missing the positivity of the group. Still shaking off the negativity of the experience. Its a good day today. I am not delusional, I speak a lot in metaphor. Thanks Tig

-- Edited by coolheat on Monday 12th of October 2015 11:07:41 PM

Cinnamon Girl · Guru

HI Marsha, it`s good to see your update, welcome back!

Thanks for posting your results. It shows that the virus was still detected but at such low levels that the test was not able to put a number on it. That`s why it says < 12 (less than 12), because 12 is the lowest number of viral particles which the test can measure. So you were almost undetected but not quite, for some reason.

But, as Tig has already said, this could still turn out fine, so don`t give up hope for an undetected result on your next test.

Apart from that, you will have other opportunities, and the next time on treatment will be the one.

We know you`ll beat this thing sooner or later, so take good care of yourself, and good luck with finding a decent doctor! smile

Keep in touch, we`re here for you any time.

coolheat · Senior Member

Hi Gracie, I will be quietly in the bushes waiting for the dragon to walk by and then pounce like mountain lion.

It says, detected. Apparently I was also detected on my 4 wk test after starting tx. He told me I was undetected. The #'s are the same as this one. Shopping for new dr.. Thanks Gracie. Thanks for sharing "you've been down this road before". Marsha

Tig · Admin

Hi Marsha,

Here is some information that may make your day a little brighter, it should. This isn't the only report I've read this in. IMO, it isn't over yet, there still remains an absolute possibility that you may achieve SVR in spite of being detected at EOT. Your viral load according to your test results, is unquantifiable (too low to count). Less than 15 copies IU/ml is a miniscule amount. At EOT +12, you NEED to have your viral load tested again! Never give up...

"Furthermore, even having low-level detectable HCV RNA at the end of treatment does not preclude a cure, the investigators for a related study concluded."

"That is, unlike with interferon-based therapy, patients should not be counseled to discontinue treatment early if viral load remains detectable at week 4, or even at the end of treatment, as there is still a high likelihood of being cured."

Viral Load Monitoring

Gracie · Guru

That is one confusing test. Were you undetected? Detected? And the amounts are so low. Mine was undetected less than 15. I hope somebody with more knowledge then me can explain this to you.

This sucks, but honestly happened at a good time, as they have unlocked the puzzle and are coming up with treatments for the ones who didn't clear. Im not 100% sure! but if you don't have a certain type of RAV, you can even retreat with 24 weeks of harvoni. It's pretty amazing the treatments they have now.

I know how it feels. With the incevik I was det week 4, undetected week 8, and detected week 12. Shopping most definitely helped me through it too!

We will all get there, just you hang on, your train ride is still heading towards the right destination!

coolheat · Senior Member

Internet and ph have been down since last post. Now up. This is my last blood test which would have been my first post tx bl. test.. He said that I failed treatment and that he had already contacted Gilead to let them know that I had failed. Hi Penelope and Gracie, am truly happy for you both and your continued success with the dragon. Marsha

coolheat · Senior Member

Hi, thanks for all the good suggestions. The dr doesn't know my app. Got moved up last week. will go in this wed.. I will get copies, I won't leave without them. I really want to know why on my first VL test after starting tx, he told my husband and I that I was undet., the my reg dr last evening who could see the test in my file said that that one was detect also. Today I went and did a little shopping. Sounds so funny, sounds so female, but good news, it worked today. Took my mind away from it all and chatted with strangers and laughed, it was good. When I know something, you will too. Thanks for all your help and caring. Marsha

Brian1412 · Guru

Could it be the lab? Do what LP says to do. Best to go to the what rather then anything this Dr is speaking.. I had to fire my first Dr for like behavior. There is nothing in the exchange that is credible based on you post and make him pay for it. It is unacceptable by any measure. When you get new Dr turn him in to the state and he is paying for TX 2 if it comes to that. Hang in there it all can be fixed but he shouldn't have landed you in this spot. Talk to lp. She will help

Cinnamon Girl · Guru

Hi Marsha, the way your doctor is treating you is appalling and I`m so sorry you`re still struggling to find out the facts about your results. It really isn`t good enough, and you deserve better, much better. All the conflicting information he`s told you just doesn`t add up, and as others have said, you have a right to see your paperwork and records.

I`m glad you`re going back in there on Wednesday with a determined attitude, and I sincerely hope he`ll be able to provide some clarification for you. If your result really did come back as `detected` then you know you`ll still have more treatment options, but I wouldn`t go into any new treatment with the same doctor!

Keep plugging away at this and try not to let this get you down, you`ll get there in the end, one way or another.

You know we`re here for you and you`re free to vent your frustrations here at any time. smile

Tig · Admin

Thanks for posting that information Joann. Very useful for those of us having trouble obtaining our records. I'd take a copy with me to any office refusing to comply. I'd give them one chance and then drop the hammer!

Marsha,

You've got a lot of people on your side! I hope you're doing well today. We're here for you and are anxious to see you through this. Strength in numbers!

bubble · Senior Member

Marsha: I am no Doctor, but I've learned 2 things about liver tests which I think all can agree. AST/ALT are markers for liver inflammation. Low platelet readings indicate cirrhosis. Please seek a Hepatologist. There are some flaws with your Doc. reporting making me concerned. Push on.

dharmabum · Senior Member

OK, this angers me.

By law, we have a right to a copy of our medical records. It is a violation of our civil rights to be denied this. I would file a complaint with the Office of Civil rights without hesitation. When my sister died, one doc avoided, delayed, and side-stepped sending her records to me for 6 months. I filed a complaint with the OCR and he immediately complied.

http://www.healthit.gov/patients-families/faqs/what-should-i-do-if-my-doctor-does-not-give-me-access-my-records

http://www.hhs.gov/ocr/privacy/hipaa/understanding/consumers/medicalrecords.html

I do not understand why this is still such a struggle...

wmlj1960 · Moderator

coolheat wrote:
Whats worse is he was almost mad at having to talk to me.

That's where I loose my respect and find another doctor. I agree with Tig, this smells funny. I would certainly want a printed copy of the results when you go in Wednesday. If your virus has returned then that can be dealt with, but I would deal with it under a different doctors care, preferably one that looks at AST/ALT results. I'll likely do the same concerning my HIV doctor after Monday's appointment unless I see a drastic change in the quality of care I have been receiving. You're right Marsha: "We should not have to beg for our health information and deserve straight answers". Hang in there and keep your spirits up. This is only a setback and there is a solution. smile

Tig · Admin

Hey Marsha,

I hoped for different news and am sorry you're having to deal with this. Something doesn't add up here. I have to wonder, is he looking at your paperwork or someone else's? I'd demand to have a copy of every original. Until such time, I'd be looking for another doctor and a second opinion. Something smells funny.

Whatever you find out, just know if you are still detected and another round of treatment is necessary, there are different options available or soon to be released. Hopefully the next year will bring better and easier to obtain protocols. We're seeing advances on a regular basis and I expect that to continue. This isn't over by a long shot. I'm anxious for you to get some honest and accurate answers. Then we'll have a better understanding of this confusing report from your doctor.

Hang in there...

coolheat · Senior Member

Dr. called, knew I was waiting for confirmation on detected or undetected. He started asking me about my hip, if they were going to have to do surgery since the osteoarthritis was as bad as it is. Told him no, not that I had been told.

I ask him about the test, he said that I had come up detected, he had no idea why, said it didn't make any sense, since I followed protocol. Said he had just got off the phone with Gilead, he let them know that I had failed. He told me I was the only one he had that failed (months ago he told me that he had, had only 3 people fail), then he said that Gilead said that hadn't had any one fail this with 1b. I said, I have 1a, he said, no I don't, that I have 1b. He said that he check me again in 6 mo. and that we would go from there. He said that's what gilead said to do also. He said there will be newer protocols available. I felt like he was hostile because I was asking questions. I said I wanted to be checked in 3 mo. he didn't like that and ask why. I said because I want to know whats happening with my body and this virus. He said then he would order a test for me in 3 mo.. I ask him what my alt and ast were and he said that liver drs. don't look at that, its not important, they just want to know what the inflammation levels are. Which mine are a little elevated because of the osteo stuff. I ask if my liver was functioning alright, he jumped and said yes, it always has been ok. (That's not what I remember), he said you don't have cirrhosis, so there is no problem. I said you are the one who told me I had fibrosis 3 to 4 and that I was just prior to cirrhosis and that I had a bunch of dead liver in me and we would have to wait to see how much my liver would come back. Nothing he said rang true with what he had told me in the past. Whats worse is he was almost mad at having to talk to me. So this evening my reg. dr called me and I ask her again if there were any #'s she could see hooked with my VL test. She said there was a 1 and something else and non quantitative, but still said detected. I am going in on Wed. to see the same liver dr. and won't leave until all my questions are answered. Thanks all for hanging in there on this one. I am not the first, and won't be the last with difficulties like this. We should not have to beg for our health information and deserve straight answers. We should also be treated with respect as I'm sure they would like to be treated. Marsha

Groupergetter · Guru

Hi Marsha,

Was hoping to see some positive news on this. Sorry it's dragging out. I noticed the post by Joann and I was going to share very similar information. My mother had thyroid problems and ended up having thyroid surgery. They accidentally removed part of her parathyroids. They did numerous labs prior to and after the surgery. It was determined her calcium levels had significantly dropped and she was experiencing bone loss. Her Dr. prescribed otc Citracal which she took every day for years. They tested her occasionally to make sure her calcium levels were normal. Are you taking supplements or meds? If you haven't had your thyroid and/or calcium checked it might be a good idea. Good luck with this. Disappointed in your doc.

coolheat · Senior Member

thanks Tig, Bubble, wmlj, yes tig, that Aug. 3 was my first and only ckeck for the virus since I started tx on June 2nd. And it did come up undetectable. Probably why I felt so disappointed. But many of you said that if you do come up detectable its in the first 4 weeks of going off of tx. So that would be in line. I am waiting to talk to dr, even if he never calls and I have to wait until next wed.. Then I will call Lucinda and ask her questions about all this mess, and then get a reference for a good hep dr in our area. This is going into my toolbox for others who end up in this situation. Like you all, there is comfort in knowing there can be a somewhat quiet resolve but a sturdy and steadfast one. In the past I might have freaked out big time. You are helping me keep my ballast. confuse

bubble · Senior Member

I agree Tig. And we have seen botched readings by Labs. Normal AST and ALT's throw a concern. Maybe re-test with another Dr.

William: I usually feel comfortable around a Dr. who can answer qualified questions when I am in his office. If he blows me off or screws up an answer it's "so long Doc". There are still Hepatoligists who care out there. Cure rates for his patients are good for his ranking. It's like taking a Ferrari to a Ford dealer. Most Doc's will send you to a Gastro. Been there done that.

I think Marsha should like many, keep pressing. If he isn't aswering move on. Don't be discouraged at all Marsha. Peace.

Tig · Admin

Marsha,

I looked back on your posts and found an Aug 5th entry that said you were undetected. I'm very hopeful that the positive result you received was as Matt said, the antibody test. You will forever be positive for the antibodies, lets keep our fingers crossed that that is what they referenced.

wmlj1960 · Moderator

On Sept 14, after several failed attempts with my doctors office, I filed a complaint with a patient advocacy service just in order to obtain results from labs done on Aug 6 by my HIV doctor. That approach wasn't getting results so I signed a release-of-information form and got my PCP to request the results straight from the lab that my HIV doctor uses. I got the results faxed the next day.
Sometimes it takes an outside-of-the-box approach to get things done these days.

"The Dr who cares about the well being of his patient" is becoming a thing of the past. The best chance we have is to get educated about our illness and stay persistent. I'm surprised you got an appointment as early as next Wednesday... you must have done some serious squeaking to get that! I hope you hear back with a confirmation of the lab report from him today. Wishing you well... smile

coolheat · Senior Member

Thank you all, talk to his nurse this am, she was surprised he didn't call me back as he had told her yesterday that he would call me last night. I told her that I didn't think it was an unreasonable request, she agreed with me. I will let you all know when I find something out. And again thank you all for your support. Marsha

Penelope PePod · Senior Member

As a fellow "Vikerian", I resonate with what Bubble said. I was diagnosed with osteoarthritis many years ago. Went through years of therapy and treatment with my right knee and ended up having total replacement in 2012. After that, it was hip pain all the time, day and night. Then my wrists, fingers, ankles, toes. One week one joint hurt, the next another. I thought I was becoming a hypochondriac, because how could this 'roving' pain be real. I figured it was just arthritis, so didn't address any of it with my doctor.

Since I started viek/rib, my joint pain has all but vanished. I thought I was going to need a hip replacement, but all is well, at least for now. I finish tx in 16 days, so we'll see if it lasts. I don't know what any of this means, or even if it's relevant.

Marsha, the way your doctor is treating you is shameful and completely disrespectful, and you deserve much better. But regardless of your doctor, who I hope will soon be you ex-doctor, YOU ARE A STRONG WARRIOR AND WILL WORK YOUR WAY THOUGH THIS! We all care what's happening to you and are here to support you.

Penny

dharmabum · Senior Member

Hi Marsha,

Maybe my situation will be helpful to you.

I see an endocrinologist for thyroid and parathyroid issues, and have had both issues for years.

In a nutshell, I have a slow thyroid (remains normal thru meds) and hypercalcemia directly relating to parathyroid glands' abnormality (surgery to remove two parathyroids did not help).

The high amounts of calcium in my blood are coming from my bones, causing osteoporosis in hips; the bad guys are the parathyroid glands. I started Prolia yesterday, which given every 6 months should begin correcting the osteoporosis.

I encourage you to see a good endocrinologist to sort it all out. Also, have you had a dexa scan in the last two years? Feel free to contact me directly on my private email at google dot com. This is going to work out for you and everything will be going your way very soon.

J

bubble · Senior Member

Marsha, I would get another Dr. you feel comfortable. A Hepatologist. I went to 4 before I found one who had a good "bedside manner". Ask questiones and get answers. Stay educated and determined.

I have said this before as a "Vikerian". When I was diagnosed in 2000 I had terrible joint pain in my hips. Off and on through the years I just said it's old age or arthritus. During treatment it subsided and to this day dont have that pain. I am just seeing a pattern in the Harvoni folks here. What ever, maybe just temporary or a pesky side effect remains to be seen. Remember....every one will react differently. I think soon more Vikerians will chime in about their experiences. We are a small army you know. smile

Cinnamon Girl · Guru

What a way to treat a patient at such a critical time, Marsha, that`s really not good enough. I sometimes wonder whether a lot of doctors have any understanding of the anxiety people feel when going through treatment for Hep C, and just how important these crucial results are to us.

I hope you hear from him today, we`ll be waiting for your update. Good luck! smile

coolheat · Senior Member

Thanks, I really am not too disturbed about not knowing the results right now, and yes, I also hope its a mistake. I will see him next wed. with an actual appt.. What really torks me is, for any of us, not just me going thru this, after what we have and are going thru; where is the Dr wanting his patient to not stress unnecessarily. The Dr who cares about the well being of his patient. Compassion for their patient who has courageously gone thru what they have to do to find life. I don't like thinking that whats important to him is who's name is on the payer line that, that's what has become the really important issue for them. You have taken away the panic, because its not the only door out their to open. Thanks again, Marsha

Tig · Admin

Sorry to hear you were ignored Marsha. Let's hope he has a good excuse. Might be a good idea to explain to the doctor that ignoring such an important promise and responsibility, was difficult for you to deal with. I hope you get that call first thing tomorrow. If not, I wouldn't wait much more than an hour to call him.

I know telling you not to dwell on this all night is nonsense, but try anyway, okay? I'm still hoping there has been an error in interpretation or testing. Hang in there...

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