RC, here's another one for ya ... LOL! ; ) Hee hee wheeee C.
casher said
Sep 27, 2017
Sorry Robertsamx. I think Iāve just been staring at all this medical shorthand for so long that o donāt even think about other people not knowing what Iām talking about.
robertsamx said
Sep 27, 2017
Would everybody stop with the secret three letter code words!! I have enough trouble getting the long hand version of these medical terms :( Dont make me half to HTY-ZPO-TGY or even half to resort to UTV. RC
casher said
Sep 27, 2017
Sorry for the double post. I refreshed the page and it reposted.
Yes, this is definitely the best GI Iāve had. Every other one has seemed preoccupied and dismissive. Sheās really been on top of things and genuinely seems interested in treating me and getting me back to good health.
Canuck said
Sep 27, 2017
ah, I see now! Yes, 2 birds/one stone I guess. Boy she sure was quick on the draw then, with the biopsy arranging, being that the SMA/ANA had just returned!
Just what you want in a doc, fast and thorough!
Good your Zep is "ready" for you.
Time to get your first of the series of B immunizations into you, being that it seems you are lacking B immunity. Time for that, while you are waiting for the biopsy to be done.
Would be interesting to know if any of them had ever tested you for SMA/ANA prior, or whether it is just this new gal doing her (very good) thorough due diligence. : ) C.
casher said
Sep 27, 2017
My hep a immunity is up to date but I need to get immunized for b. We had never discussed AIH before. I e only been seeing this doc for a short time. Iāve had to bounce around GIās because my insurance has been different every year through the ACA.
casher said
Sep 27, 2017
Canuk,
The biopsy didnāt get scheduled until after the results came back. Before that I originally had a fibroscan scheduled but the results prompted her to do a biopsy instead (two birds with one stone I guess). Iām honestly not sure if Iāve had the SMA/ANA done before. Sheās putting me on Zepatier for 12 weeks. The prescription has already been called in and Iāve talked to the specialty pharmacy and itās all ready to go, but she wants me to have the biopsy done before I start.
Canuck said
Sep 27, 2017
Casher,
ah, that is what I thinking, that the doc is using the biopsy partly as a tool for helping to rule in or out AIH (it will also provide other info of course).
But what confused me was that the biopsy had already been planned prior, (before you arrived here with very first pos SMA and before you had even had a chance to discuss your first positive SMA with the doc), so of course I wondered how your biposy (if the impetous was in response to the pos SMA and to rule out AIH) had been justified, and how it got planned prior to discussing the SMA results with your doc.
(Good to know you also had a pos ANA return along at the same time as your pos SMA).
Had you and your doc been discussing the possibility of AIH before?? (before you just recently became aware of your pos SMA/ANA)?? In your very first post you seemed surprized, and it sounded like AIH had not been a topic before, between you and your doc. Maybe your doc had been testing you/screening you for AIH prior and it now has just come to the fore for you.
You said all your prior labs were normal this last 4 years (save VL), but did any of your other labs in the last 4 years include prior SMA/ANA testing? Or was this testing for SMA/ANA the very first SMA/ANA you had ever had done?
Your doc sounds thorough (endo/biopsy etc) - a good thing.
You are delving into learning about AIH on your own, and knowledge is good thing.
Good you will be seeing her for endo on 19th, when you may be able to discuss your pos SMA/ANA with her further.
Is your Hep A/B immunity up to date? Is it Harvoni you are waiting for?, and when does your doc think you will be ready to start? : ) C.
Tig said
Sep 27, 2017
They do consider biopsy as a determining factor in AIH sometimes, but that's when there's uncertainty too. Typically they can diagnose it without that, but should your doctor decide that's the right way to go, do it. Biopsies, I've had several and they're easy. Not fibroscan easy, but easy enough and they do provide a lot of useful information. The endoscopy will provide some good evidence if you've been suffering with severe reflux. Determining that and finding a treatment to control it will make you feel so much better. Since your fibrosis score is so low, the probability of esophageal varices is also low, but it's still good to know when you're in the clear.
You may have seen this information before, but I want to provide you with the link. It's a good description of AIH and things associated with it.
The biopsy is to check for autoimmune hepatitis. They were just going to do a fibroscan before the blood work came back. They did an ANA and it also came back positive with a titer of 1:40. From everything Iāve read over the past couple of days, having these tests come back positive with a low titer is fairly common in people with HCV.
I havenāt talked the doc yet, but I already have an appointment with her on the 19th for an endoscopy. I occasionally get some pretty rough indigestion and she just wants to check for damage from possible acid reflux.
Tig said
Sep 27, 2017
Youre in trouble now Chris, Canuck has started talking in three letter code, ANA, LKM, CRP... Shes known for delving way back into your DNA history!
Im also curious about the need for a biopsy at this point, unless there is another underlying reason. Your lab history and F Scores using alternative methods seem to be quite acceptable. Biopsy is still quite useful, but not utilized as much for determining fibrosis in HCV as it once was.
Canuck said
Sep 27, 2017
Casher,
Thanks for the aditional info - background info is always helpful when questions arise. Indeed you DO sound like you are in better shape than lots of people without Hep C! Good to know you had an U/S 1 1/2 yrs ago and all looked OK. Good to know you have been mostly asympmtomatic, low Fscore 0-1, and you sound like you have been treating yourself well, eating well, living healthy - all good states to be in as you approach Hep C treatment.
How long ago did your doc tell you you should have a biopsy, and why? Did he say it was "just routine" for one to be done prior to Hep C treatment?
Of the annual labs you have had done for the last 4 years, did they do a SMA every year and those were all neg (except this year)? For the last 4 years, have they done any of these ... ANA, LKM-1, C-proteins/or CRP, cryglobulin, LDH,AFP? (No need to provide all "normal results", just interested to know how extensive/what was included in your annual labs beyond basic panels). I assume all your ALP's/billirubins over the years have been within normal limits?
Have your Hep A and B immunity levels been checked, and if deemed you needed to be immunized (or re-immunized) have those been done?
So, being GT1a, I am guessing you and your doc have been discussing Harvoni? If all the preliminary work-up has been completed, and you are insurance approved, how far away is your start?
Have you found out when you can discuss this SMA result with your doc yet? C.
casher said
Sep 26, 2017
Thanks you all for your replies. As to the acronym, itās short for āsmooth muscle antibodyā.
My genotype is 1a. I have had an ultrasound, last one was about a year and half ago and everything looked good. No biopsies but Iām in the process of scheduling one now. I havenāt had a fibroscan done but Iāve had all the blood tests that check for cirrhosis and fibrosis. Last test was an F0-1. I just had a battery of blood work done (far too much to list everything here). AST is 29 and ALT is 35. If there are any other numbers youāre interested in I can look them up.
As far as how I feel, Iām largely asymptomatic. I feel pretty good. I work 5 days a week full time and spend the weekends cleaning the house and hanging out with my daughter. Weāre fairly active. I wish I could find the time for more physical activity. I donāt tire easily. I eat well. My appetite is good. Iām in far better shape than most of the people I know who donāt have hep c or anything else.
I think that covers it. Iām typing this on mobile so I canāt reference any of your comments to see if there is anything I left out so if there is Iāll answer in a new comment. Thanks.
Chris
Canuck said
Sep 26, 2017
Hi Casher,
Welcome here!
Sorry to hear you are suddenly having this extra worry, but glad to hear you are near to be treated for your Hep C.
Please, can you provide some additional info about yourself, it might prove helpful, just for discussion puposes. Genotype (GT) for instance? And what Hep C drug regime you and your doc have been planning/wishing for?
I see you are young(er), and you note you have been Hep C positive for aprox. at least 8 years, and have reported that all of your labs have been returning back "all normal" for the last 4 years (all except of course for your low Hep C viral load, and now this one SMA). But can you give us an idea of what labs they have been doing on you (what your labs have included) "every year" for the last 4 years?). That might be helpful to know what kind of tests you have been having every year, even if they were "normal".
It is very good news (and bodes well to your favour), that these other labs you mentioned have all been returning normal for the last 4 years, and as well, youth is to your favour, and additionally, that you may have had Hep C (perhaps) not much longer than 8 years.
In addition to knowing what particular kinds of lab testing you have been receiving, have you any of these tests? - liver biopsy, fibroscan, abdominal ultrasounds, CAT scans, or other GI imaging? Do you happen to know what your fibrosis levels is (an Fscore). On physical exam do they note/see any abnomality. Do you have any other health problems/diseases going on (aside from Hep C)?
You have not really conveyed how you feel these last 8 years or so, as far as symptoms - how are you feeling? What symptoms do you experience, if any?
All this kind of info would be helpful.
At this point it IS too premature to draw conclusions about one postive SMA, Tig is right, your doc will very most likely do further testing before he can draw concusions. There IS an association between just having Hep C and having a positive SMA. There is ALSO an association between just having mono and a having a postive SMAS.
A normal SMA titre (in my book) is supposed to be less than 1:20, a weak positive can lie somewhere between 1:20 to 1:30, and a technical positive can start at over 1:30, and I see mention that SMA can range higher than 1:80, so, yours at 1:40 is quite a bit less than that.
Please do let us know when you are going to be able to discuss this with your doc. We will want to know you are OK. C.
Tig said
Sep 25, 2017
Hi Chris,
Welcome to the forum. While AIH is suspect with a positive SMA titer of 1:40 its not a clear diagnosis either because viral hepatitis, among other things can return the same results. I wouldnt panic in any case and wait for your doctor to review this and provide additional testing. Heres a link that may help you understand the wider scope of your result. Hep C can throw all sorts of curve balls. I really suggest you wait for a clearer explanation.
Hi Chris- Welcome to the forum. Will you tell us what the acronym's are in long hand!! RC
casher said
Sep 25, 2017
I have had Hep C for at least 8 years and known about it for about 4. I have yearly blood work done and every year everything comes back normal except for the fact that I have hep c. My VL is always relatively low (last test put it at 245,000). Liver function is and always has been normal and everything is within normal range. So, I got my last labs back today and everything is as it always is except this time I tested positive on the SMAS with a titer of 1:40. I'm kind of freaking out. I finally got approved for the new gen "cure" and am about to start it and then this. I haven't talked to my doc because I literally got these results 30 minutes ago, but I'm curious what this means. I know it's a marker for AIH, but I'm seeing conflicting answers on whether or not HCV can cause a false positive. I've been tearing my hair out with worry for years waiting for next gen drugs that I could afford, finally got them, and I may have AIH? Has anyone else had this experience?
RC, here's another one for ya ... LOL! ; ) Hee hee wheeee C.
Would everybody stop with the secret three letter code words!! I have enough trouble getting the long hand version of these medical terms :( Dont make me half to HTY-ZPO-TGY or even half to resort to UTV. RC
ah, I see now! Yes, 2 birds/one stone I guess. Boy she sure was quick on the draw then, with the biopsy arranging, being that the SMA/ANA had just returned!
Just what you want in a doc, fast and thorough!
Good your Zep is "ready" for you.
Time to get your first of the series of B immunizations into you, being that it seems you are lacking B immunity. Time for that, while you are waiting for the biopsy to be done.
Would be interesting to know if any of them had ever tested you for SMA/ANA prior, or whether it is just this new gal doing her (very good) thorough due diligence. : ) C.
Casher,
ah, that is what I thinking, that the doc is using the biopsy partly as a tool for helping to rule in or out AIH (it will also provide other info of course).
But what confused me was that the biopsy had already been planned prior, (before you arrived here with very first pos SMA and before you had even had a chance to discuss your first positive SMA with the doc), so of course I wondered how your biposy (if the impetous was in response to the pos SMA and to rule out AIH) had been justified, and how it got planned prior to discussing the SMA results with your doc.
(Good to know you also had a pos ANA return along at the same time as your pos SMA).
Had you and your doc been discussing the possibility of AIH before?? (before you just recently became aware of your pos SMA/ANA)?? In your very first post you seemed surprized, and it sounded like AIH had not been a topic before, between you and your doc. Maybe your doc had been testing you/screening you for AIH prior and it now has just come to the fore for you.
You said all your prior labs were normal this last 4 years (save VL), but did any of your other labs in the last 4 years include prior SMA/ANA testing? Or was this testing for SMA/ANA the very first SMA/ANA you had ever had done?
Your doc sounds thorough (endo/biopsy etc) - a good thing.
You are delving into learning about AIH on your own, and knowledge is good thing.
Good you will be seeing her for endo on 19th, when you may be able to discuss your pos SMA/ANA with her further.
Is your Hep A/B immunity up to date? Is it Harvoni you are waiting for?, and when does your doc think you will be ready to start? : ) C.
They do consider biopsy as a determining factor in AIH sometimes, but that's when there's uncertainty too. Typically they can diagnose it without that, but should your doctor decide that's the right way to go, do it. Biopsies, I've had several and they're easy. Not fibroscan easy, but easy enough and they do provide a lot of useful information. The endoscopy will provide some good evidence if you've been suffering with severe reflux. Determining that and finding a treatment to control it will make you feel so much better. Since your fibrosis score is so low, the probability of esophageal varices is also low, but it's still good to know when you're in the clear.
You may have seen this information before, but I want to provide you with the link. It's a good description of AIH and things associated with it.
Autoimmune Hepatitis
Youre in trouble now Chris, Canuck has started talking in three letter code, ANA, LKM, CRP... Shes known for delving way back into your DNA history!
Im also curious about the need for a biopsy at this point, unless there is another underlying reason. Your lab history and F Scores using alternative methods seem to be quite acceptable. Biopsy is still quite useful, but not utilized as much for determining fibrosis in HCV as it once was.
Casher,
Thanks for the aditional info - background info is always helpful when questions arise. Indeed you DO sound like you are in better shape than lots of people without Hep C! Good to know you had an U/S 1 1/2 yrs ago and all looked OK. Good to know you have been mostly asympmtomatic, low Fscore 0-1, and you sound like you have been treating yourself well, eating well, living healthy - all good states to be in as you approach Hep C treatment.
How long ago did your doc tell you you should have a biopsy, and why? Did he say it was "just routine" for one to be done prior to Hep C treatment?
Of the annual labs you have had done for the last 4 years, did they do a SMA every year and those were all neg (except this year)? For the last 4 years, have they done any of these ... ANA, LKM-1, C-proteins/or CRP, cryglobulin, LDH,AFP? (No need to provide all "normal results", just interested to know how extensive/what was included in your annual labs beyond basic panels). I assume all your ALP's/billirubins over the years have been within normal limits?
Have your Hep A and B immunity levels been checked, and if deemed you needed to be immunized (or re-immunized) have those been done?
So, being GT1a, I am guessing you and your doc have been discussing Harvoni? If all the preliminary work-up has been completed, and you are insurance approved, how far away is your start?
Have you found out when you can discuss this SMA result with your doc yet? C.
Hi Casher,
Welcome here!
Sorry to hear you are suddenly having this extra worry, but glad to hear you are near to be treated for your Hep C.
Please, can you provide some additional info about yourself, it might prove helpful, just for discussion puposes. Genotype (GT) for instance? And what Hep C drug regime you and your doc have been planning/wishing for?
I see you are young(er), and you note you have been Hep C positive for aprox. at least 8 years, and have reported that all of your labs have been returning back "all normal" for the last 4 years (all except of course for your low Hep C viral load, and now this one SMA). But can you give us an idea of what labs they have been doing on you (what your labs have included) "every year" for the last 4 years?). That might be helpful to know what kind of tests you have been having every year, even if they were "normal".
It is very good news (and bodes well to your favour), that these other labs you mentioned have all been returning normal for the last 4 years, and as well, youth is to your favour, and additionally, that you may have had Hep C (perhaps) not much longer than 8 years.
In addition to knowing what particular kinds of lab testing you have been receiving, have you any of these tests? - liver biopsy, fibroscan, abdominal ultrasounds, CAT scans, or other GI imaging? Do you happen to know what your fibrosis levels is (an Fscore). On physical exam do they note/see any abnomality. Do you have any other health problems/diseases going on (aside from Hep C)?
You have not really conveyed how you feel these last 8 years or so, as far as symptoms - how are you feeling? What symptoms do you experience, if any?
All this kind of info would be helpful.
At this point it IS too premature to draw conclusions about one postive SMA, Tig is right, your doc will very most likely do further testing before he can draw concusions. There IS an association between just having Hep C and having a positive SMA. There is ALSO an association between just having mono and a having a postive SMAS.
A normal SMA titre (in my book) is supposed to be less than 1:20, a weak positive can lie somewhere between 1:20 to 1:30, and a technical positive can start at over 1:30, and I see mention that SMA can range higher than 1:80, so, yours at 1:40 is quite a bit less than that.
Please do let us know when you are going to be able to discuss this with your doc. We will want to know you are OK. C.
Hi Chris,
Welcome to the forum. While AIH is suspect with a positive SMA titer of 1:40 its not a clear diagnosis either because viral hepatitis, among other things can return the same results. I wouldnt panic in any case and wait for your doctor to review this and provide additional testing. Heres a link that may help you understand the wider scope of your result. Hep C can throw all sorts of curve balls. I really suggest you wait for a clearer explanation.
SMA Titer
Hi Chris- Welcome to the forum. Will you tell us what the acronym's are in long hand!! RC
I have had Hep C for at least 8 years and known about it for about 4. I have yearly blood work done and every year everything comes back normal except for the fact that I have hep c. My VL is always relatively low (last test put it at 245,000). Liver function is and always has been normal and everything is within normal range.
So, I got my last labs back today and everything is as it always is except this time I tested positive on the SMAS with a titer of 1:40. I'm kind of freaking out. I finally got approved for the new gen "cure" and am about to start it and then this.
I haven't talked to my doc because I literally got these results 30 minutes ago, but I'm curious what this means. I know it's a marker for AIH, but I'm seeing conflicting answers on whether or not HCV can cause a false positive. I've been tearing my hair out with worry for years waiting for next gen drugs that I could afford, finally got them, and I may have AIH?
Has anyone else had this experience?