Hep C Discussion Forum

Well said, Sticker.  I learned that when caring for aging parents.  They needed an advocate because the left and the right hands of medicine were not talking to each other enough.  They really are scattered in a triage setting so it may be unreasonable to expect  more in our system.  It is a system, not a best friend.

PoloSilver,  One of my first overt signs of HepC was oral lichen planus, which was mysterious to my dentist and my doc.  It went away entirely after HCV treatment.  Oral health is quite revealing.  I kind of see it as half inside, half outside.  Your dentist's response is a terrific sign, don't you think?

Canuck,  Auh shucks.  Well it is true.  You are really amazing  Deal with it. :)

I do so enjoy seeing us all putting one foot in front of the other to take care of ourselves and each other.

Thanks, friends.

catching the good health rays here -- today I went to the dentist for a crown on a back molar. (the large filling fell out last week)  After the drilling and such, the dentist said your gums and tissue are very healthy. Then he said, "I was amazed how quickly your blood clotted and the tissue healed. By the time I finished the tissue was already healed over. That is the sign of a healthy liver." I'm serious, that is what he said! I didn't tell him about my recent ctscan stuff, it seemed irrelevant at this point, so this was an unsolicited comment and I'll take it. 

ps

I'm still keeping my appointment on the Sept 18th with the Gastroenterology Specialist though. I'm still feeling good and am wondering if I had food poisoning when I had all the flare ups...not sure that explains the so-called enlarged liver that was later on another ctscan called normal. Anyone know if food poisoning can cause amylase to be high?

polo, so are they saying your liver had gas and now it farted? 

Hi C -- You are amazing, with your CD's and reading images. Impressive. Before my Sept appt I may give that a go, just to see what the images show and the sizing. I've never thought to be that involved in the process. This may be a good time to start, I'll think on it. The mantras I referred to are Deva Premal (she's from germany) She chants/sings/composes music from ancient Sanskrit and I find them calming and beautiful. They aren't for everyone, but if you want check one out query Deva Premal on youtube.

Iris --- Yes, my fingers are sore and my left wrist and forearm a bit as well. Today I could only play about half hour due to soreness. I found one of those grippers to help strengthen my hand..so I can keep it up. Those metal strings though, are ouchy...yet its a lot of fun. I watched a couple more hurdy-gurdy vids on youtube,,,what a cool instrument. Do you listen to Gilhem Desq or Patty Gurdy? Wow, thanks for telling me about this. Fascinating instrument.

hi 5 -- I agree, we are on the journey of 10,000 steps of health...teehee.

Polo,

From one imaging session to the next, yes, the different radiologists using differents words and having different ideas as to what is important or "note worthy" can be a confusing, daunting task for everyone else trying to figure out in the aftermath as to what the most current findings are in comparison to the old findings. My pet peeve, semantics, using the right words, and more pet-peevey stuff - thoroughness/ continuity - following up without ignoring prior findings, we need clear follow-through - to be able to see clearly what has changed/is resolving or has resolved and/or what new things might have developed!

I have found (on occasion) buried within many 10, or 20's or 100's of images, all taken with one session, oddly positioned pages that contained further info than what is just printed on the radiologists "report" (the usual radiology report that contains the heading "impressions" etc. Sometimes on a separate image page I have (by accident) stumbled over/found further references to measurements or other such info about an organ/condition, info that may not have ALL be included in the same page where the radiologists report lies. My U/S tech, for example, has been known to add her very own, good, info to an U/S report on a page that is not on the official page of the the radiologists interpretation.

I think it's good to have and review our own images/reports, for what it can be worth (for what one is able to glean from them as layman). Maybe like me most people may not be able to easily understand the images or the report info, but one can pick up on some of the obvious stuff and it then allows me to formulate better queries for my doc about the tests results, and for me (personally) to try to follow my own progress/changes. 

Every CD of my images that I request (U/S's or CATs) I carefully go through each image page and see what is there (for myself) as well as read the accompanying radiologists report. It can be a bit of an exercise in frustration, but (eventually, in the end) overall I do get a bit more info that way (I think).

You are on it - you are not far now from getting some clearer info - no panicking allowed. 

Mantras? What mantras? Not sure what you mean. Nite.  C.  : )

hi 5 - I checked and mine were PCR quan as well, back in the day when the doc knew what they were looking for.

The old clinic called me today and they don't see anything too alarming at this point and scheduled me for Sept 18th...my new gastroenterology specialist is on vacation. He's originally from Egypt so out of the country. (I'm in US). Here is what is interesting the second  CTscan notes say my liver size is normal! What the heck? So is my liver inflating/deflating like a balloon? Bugger..what is put on the notes is so subjective, based on who is reading them at this clinic. I could read that a different doc read the ctscan from this week as opposed to last month when the enlarged liver comment was there, and I was given the Hepatomegaly diag. However,,,Canuck will get a hoot outta this..the new ctscan from this week mentioned severe calcification of the aortic..and it was the same doc that said it last year when they sent me to vascular and they gave me all the vascular tests and said the calcification is minimal and nothing to worry about it. So...it will be good to be back with a Specialist. My new doc is from the Advanced GI group.

I told the nurse that I want the size information from the scans and she said the doc will review everything in detail with me in Sept. I checked his ratings and ALL of the 12 comments on him are stellar. I also like his credentials, so I'm feeling good about it and grateful that my pri care doc realized she was out of her league and recommended I go to the other clinic. (My current pri care clinic has a gastro specialist group, but she recommended I go back to my old one) I think I'll be in good hands again and my insurance will cover it. I'm feeling better today than yesterday, so hopefully this trend will continue. I also had a bit more energy today. I took a nice loooong walk and listened to mantras and watched birds and butterflies..did some organizing..and practiced my chords on the dulcimer. yay!

MissusB wrote:

---

I just looked back at my labs to make sure...mine was quantitative 

---

 thanks so much, yep my docs are all goofed up most of the time so we have to stay on top of it. i emailed back requesting the quant and a few others.

if the balk i will go to my family dr and ask for the quant plus these others which were high a year ago.

Alpha 2-Macroglobulins, Qn
Iron and TIBC-Iron, Serum
fibrosis score - FibroSure for hcv
Transferrin Saturation-Iron

does anyone know if they are supposed to do the qual or the quant?

suddenly i was changed from quant to qual and i already don't trust that clinic i emailed them to see what they have to say.

Thanks for all the responses here, what a wonderful place to share this ride and feel supported. Whew, what a last couple of weeks. Now I'm wondering if I've simply had a bug or something, along with aging. Whatever, I suppose time will tell with checkups, etc. I'm tired of the drama with this and the ineptness of medical folks. Its a waste of everyone's energy. I'm going to take a walk this morning, enjoy the sun, the day, continue to drink lost of water and eat a healthy diet, adding more healthy calories and hopefully will receive a call from the other clinic soon. 

Canuck -- yes, all my blood work was good except amylase was high, but not high enough for pancreatitis or anything. It was 165 Monday, so maybe just a flare up due to something I ate. I am not going to worry, and will look forward to getting back with a specialist provider who is in the know and on their game.

Thanks much everyone --- I'll focus on supporting others while I wait.

ps

WHAT?!?!!  This is a shocker.  I don't think you should just wait for them to call you.  I would keep calling and get yourself to to the front of the line.

PoloSilver, this is not a drama.  If you were being dramatic I would be thinking, "Save it for the real stuff."  This is the real stuff.  I am glad you are pursuing this vigorously.  There will be an answer if you don't let them give up.

I think there is much to be hopeful for.  As Tig said, a non specialist simply naive. 

Please continue to update.  Eat something healthy and fattening, too.

Ched

Hey everyone --- soooooooooooooooooooo,,,,my CTscan showed no gallstones, no pancreatitis. They said my symptoms are due to HepC and enlarged liver, when I asked about the HepC VL they said they had not gotten that far yet. So I'm thinking along with everyone else here that just because I'm REACTIVE, doesn't mean I have a VL. Sorry to alarm everyone, I was pretty shocked and now they finally posted the HCV tests and there is no PCR for VL with it. I'm thinking they have misread the REACTIVE because I have the antibody. Can you believe that? Yep, it sounds like some here can because it was suggested by most of you that this could be the case. So I'm hopeful a PCR will show no VL. However, that puts me back to why do I feel so crappy, losing weight and my insides in an uproar. At least I'm going back to the previous clinic and they will have better equipment and know what all to check for. This current place doesn't seem to know their HCV stuff. My amylase was 165 yesterday, up 15 points from last Friday, not sure what the heck is happening here. 

I apologize that I created this drama, I'm back to hopeful there is no VL when I get the next testing. Now I have to wait for the other clinic to call and they are often quite slow. I suppose I'm in a waiting stage and hopeful they will call tomorrow. I can't believe my doc didn't know that I would always test REACTIVE. Here is what the report they finally got posted online says:

- RESULTS CONFIRMED

- VERBAL RESULTS/ORDERS CONFIRMED BY "READ BACK".

- HEPATITIS C REFERENCE RANGE:

- NON-REACTIVE:  ANTI HCV IgG NOT DETECTED. PATIENT PRE-

- SUMED NOT TO BE INFECTED WITH HCV.

- GRAY ZONE:  SUGGEST RETEST

- REACTIVE:  ANTI HCV IgG DETECTED.  PATIENT IS PRE-

- SUMED TO BE INFECTED WITH HCV. STATE OR ASSOCIATED

- DISEASE IS NOT DETERMINED.  FOLLOW CDC RECOMMEND-

- ATIONS (MMWR 1998: 47 (RR-19) FOR SUPPLEMENTAL

- TESTING.

PS, are you getting in to see your hep doctor soon? i am praying that your fam. doctor isn't correct.

still, yes, there are other tx's, and no one wants to go thru that again but getting well is the primary focus.

after your scan the hep doctor will know more.

you will get thru this

has your liver doc tested you since jan 2018?

Now that's something none of us was expecting to hear! Yes please, find out if this was an actual PCR Viral Load or mistakenly, the Hep C Antibody test. Seriously, there are people out there that don't know the difference. Every one of us will forever be Hep C Antibody positive, regardless of SVR. Lets see what that answer is first. You are right though, the next regimen would likely be Vosevi, unless they've come up with something new and haven't told us. If it's a relapse, that will be an easy concern to resolve.

Let us know what the blood work particulars are when you get them. Just know, you're getting there, the questions are being answered and the solution is soon to follow.

So my primary care Doc just gave me a personal call and said that my test results show that I have HepC again!! She is calling the previous clinic where I was treated to talk to them this afternoon while I get the abdominal CT Scan. Her recommendation is that I go back where I was treated initially, because they are more equipped for extensive testing for fibroscans..She said after discussing with them, she would call me later today after my Abdominal CTscan. 

This is not a welcome development here. That said, I know there are better drugs than Harvoni at this point in time,,so let's see how it goes. 

In SHOCK here..

ps

Good to know they're going to investigate this further. They'll be looking at everything, but the gallbladder and pancreas are often responsible for serum amylase elevations. When the enzymes aren't permitted to enter the digestive track properly, the amylase can elevate. That's about as much as my armchair doctoring and opinions can offer in the way of an explanation. I'm glad you're getting to the bottom of this. It's good to know what needs to be addressed, so you can get your health back on the track you deserve!

Hey all -- thanks for all the feedback, support and suggestions. We are spot on here. The doc office just called and my amylase was significantly higher yesterday from Friday and has ordered a CT Scan of the abdomen right away and will also check gallbladder. They are supposed to be calling me soon to schedule it. I don't want to be sick, yet I feel a bit relieved that they have found something to keep this investigation moving along, since I want to feel better. 

I'll keep things updated here...Thanks again everyone, super appreciate it.

ps

Polo,

After DAA cure of HCV, IF  they justify that we should be on their on their list for "routine following" with an annual check-up for HCC, then our docs may routinely do an AFP (and likely other bloods) and arrange for repeat abd. U/S's to be done. A doc might order an abd. ultrasound with the req. indicating what organs may be of particular interest, and/or exactly why the abd. U/S is being requested, and frequency (how often/when the next repeat U/S should be done going forward) ... ie. post HCV cure, hx cirrhosis. Repeat abd. U/S q 6 months.

Some docs have good reasons for using CAT's with dye/or CAT's without dye OVER using an adb.U/S's, for their purposes. Some docs will feel a MRI or CAT is merited for specific reasons. It really does just depend on their good judgement what mode of imaging they feel is best to use for you, in your case, and given what specifically he wants to see and follow.

I cannot recall how many repeat U/S's you have had, in the past, pre-HCV- treatment and post, nor how many repeat CAT's you have had (with and/or without dye) again pre-HCV-treatment and post, but regardless, your doc would have specific reasons for choosing the "type" of image info he wished to see (CAT or U/S). In this last CAT you mentioned that your doc specifically requested "kidney" (and, i don't know what else your doc highlighted it's req), but the radiologist does mention prior renal info in this report, he did not mention prior hepatic info though). I think, often, CAT's for (say) "renal" interests will of course show very many other adb. organs. I would not be surprised if your doc (or any doc) has preference for visualizing certain things with CAT's/US's or MRI's., but from this current CAT you had, I certainly do not expect they would be witholding any other organ captured in the images to exclude all things seen except kidney per say. Of course he might comment on a large liver, if he had noted one, just like he commented on "limited lung bases".

Even if a CAT was ordered exclusively just to investigate "kidneys", the radiologist may and can make note of other things in his report not exclusive to the kidney. If he does not comment on another organ (other than kidney) that does not mean the CAT did not capture images of many of your other abd. organs. CATS can capture images of many organs even if the req just specified "check kidneys".

Good you had some more labs done and have your GP to bumps heads with, but I still think you are lacking some (old/background) basic info - comparing old images to see/measure how much liver "enlargement" there was BEFORE, as to now. That's one thing - being able to eyeball the old and new images and compare the measurements on the radiologists report - this "enlargement" might be less of an issue than it is sounding like. How "big" was your liver before and how large is it now - we don't know - perhaps it is the same as before! Maybe get your GP to sit down and have a good look at your before and after liver sizes/measurements in repeat imagings, go over it with you. That might be reassuring.

Sorry you are not feeling good and are worrying. I know all of you (you and your docs) will get to the bottom of these mysteries. I think you are going to be right as rain, and hopefully get to feeling better soon, and the sooner the better would be best! : )  C.

Hey Folks --

Thanks for the encouraging feedback! I'm feeling good about it in general, and expect the results back on amylase tomorrow. The H. pylori, ammonia and vl in the next few days. I wonder what is causing the fatigue and weight loss, it may just be aging process. 

MissusB - does the abdominal CT show more than the kidney/liver CT? My pri-care said they could see the colon, and so the abdominal would be different than that? 

I see that gallbladder flare-ups can cause weight loss. I am relieved that overall it seems as if I have a good report for having enlarged liver, so hope all will smooth out soon.

Thanks everyone for the support here. I'm not talking about it much around the house, so it helps to have this support.

ps

hey PS , i hope they look at your gallbladder too. that little sack can cause pancreatic problems too.

maybe it was just an after tx anomaly and you are on the mend

Hey all - so now I'm drinking club soda and I have a box of those gin-gin chews. My stomach is a bit better than it was Friday.  

Many of my tests results are rolling in today. So far everything is normal except my amylase, one of the pancreatic enzymes. Here is the result from Friday.

They called this afternoon and wanted it re-checked so I drove over right away, and they are re-testing it. Hopefully, this was temporary and it will be normalized today. My wbc/rbc and everything else was in normal range except Chloride, but with everything else in normal range, they didn't think this was a concern. 

From what I just read, it would make since that my roiling stomach would be a result of a mild pancreatic inflammation. However, even the 150 isn't considered pancreatitis from what I just read. So I'm waiting on the hepatitis VL, H. Pylori and ammonia levels. In case someone is interested in looking, here is the other results that came back.  To me everything looks great at this point. Hopefully, the pancreas amylase will come back normalized tomorrow.

- CHLORIDE NOTE:  Triglyceride at 600 mg/dl may cause a positive bias of

- approximately 2.1 mmol/L for Chloride.

Does ginger help at all? I like to get the chewy candies. 

Thinking about you on this long weekend, Monday will be here soon.

BB, Iris

Polosilver,

This sounds scary.  I am so sorry you are feeling poorly.

When do you expect to start getting test results?  I wonder if this has to do with treatment or is something else. Whatever it is,  I'm glad you are taking steps to get to the bottom of it.  Please keep us up to date.

Best of luck, and good health, PS.

Cheddy

Hello MissusB & 5 and other lurkers

Thanks for your support, and kind words, appreciate it.

When I started tx I weighed around 118.6 (I'm 5'2") and during treatment I moved down to 116 to 118. I completed treatment Nov 2017 and weight stayed same. for awhile:

July of 2018 I weighed 114.5

December 2018 weighed 113.4

May 2019 111.4

August 2019 107.2 

Thanks for asking about this 5, since I had not really checked into the timeline of my weight loss. Other factors are I eat a healthier diet than 2 years ago, and the aging factor.. I'm 65 and my dad and grandmother both lost weight as they got older, but not until in their 70's. My concern though is in how I feel, something isn't right I sense. I frequently have foot cramps too and my head feels fuzzy at times. The other thing is I don't drink alcohol anymore either. I used to enjoy a beer or glass of wine, but I stopped because I would just take a sip and it would go right to my head and then when I learned of the HCV, it was recommended to not imbibe. I'm usually high energy and I more and more feel fatigued. On the weight loss, I used to eat breakfast and then snack a lot until dinner. Now I eat 3 meals, so these changes I think could affect my weight, since I'm being more balanced. Hopefully, I'll know something next week and they can get me to a place where I feel better and not so fatigued and stop my insides from roiling around. I do hope I've just picked up some infection or something that can be knocked out by antibiotics. 

ps

Hate to hear youre having these issues and hoping your docs get to the bottom of it soon.  Hang in there!