Hep C Discussion Forum

Bilbo,

Good information links you posted.

If we use the search function box and just type in "thyroid" as in (hyper/hypo/ism) a plethora of posts will be brought up, all kinds of folks have talked about various aspects of thyroid in the past here!

It is more popular a topic/query than perhaps people know! 

Cinnamon Girl, back in 2015 posted a good informational thing on the site, about extrahepatic manifestations of HCV (from hcvadvocate), which includes a small bit on the topic of thyroid, here ... Extrahepatic Manifestations of Hep C - Updated Fact Sheet  

As well, Tig posted on that thread, another helpful link (from Lucille Porter and hepmag) another resource where people may find info about many things to do with HCV and thyroid if they search it.

I am sorry your thyroid decided to give you trouble - I hope your treatment for it gets sorted well enough soon. I have heard the balancing of hormone level can take some juggling at first. C. 

Hi bilbo and lamassu,

Well now you've done it - you two have dredged up the endlessly unsolvable nail that can't easily be hit on the head. It wasn't just the other day we were (yet again) exploring, well, (more like lamenting) why can't we and when can we donate our parts/organs easily/freely. And again, (just recently) we were also talking about blood donations 

 - reading back in the site (over the years) it seems this is a really big topic - it keeps coming up again and again (organ and blood donations). Of late, more and more articles are being posted here about HCV+organ donors and recipients. 

Until things get sorted further bilbo, i think you and your bro are doing a wonderful service just by getting people to donate blood. Countless people you will never get to know, appreciate and thank you for your endeavours. Helping people, in any way possible, is something we could all aspire to.  C.

Hi Bilbo,

AFAIK the blood banks only test for antibodies once that is positive they dump the donation. Your viral load may be below detection limits but you could still be carrying HCV under 10 IU/ml and possibly infect others. According to the American Red Cross guidelines:

If you ever tested positive for hepatitis B or hepatitis C, at any age, you are not eligible to donate, even if you were never sick or jaundiced from the infection.

Yesterday I passed my one year anniversary of taking my Last Harvoni.  So I celebrated by calling The Red Cross to find out if I can donate blood when I pass my one year clear test.  After all it says in the guidelines that you can't donate blood if you lived in the household with someone who has Hep C for 12 months. and I wouldn't have.  They said they haven't developed guidelines for people who have "undergone treatment"  I said "they call it cured" She repeated the statement. 

This is important to me since it is a family value to help others. My brother was excited when I got cured not only for me but he could start donating again because he was approaching his 20 gallon mark. I also ran blood drives in college and collected about 1,000 pints a year.

Keep going everybody for those of you who are thinking about treatment and those of you are undergoing treatment it is well worth it.  And for those of you who helped me during my treatment Tig, Canuck to name a few thanks for all the help it meant the world to me.

THS 42.50 H range 0.30-5.0

Hepatitis C

(HCV), RT-pcr Quant ) 9:30

The Quantitative Range of this assay is15 IU/mL to 100 Mil

HCV Not Detected

So I went to my PCP today the Fatigue is probably Hypothyroidism like most of you deduced.  The Tinnitus is wax buildup since I wear Ear Plugs to bed.  Someone in the house snores and it isn't the cat.  I start Thyroid supplement treatment tomorrow. 

Hi Bilbo,

Sorry I was a bit late for the party, just got back into town. Was on one of those medical toursim vacations.

Congrats on your hard won win!  

2 great big UNDS under your belt!! First UND at 4 weeks and now a EOT+6weeks UND. 

I hope you just continue to feel better and better.

Ya, I had the same question Tig did (often, they do bloods/VL) at EOT, but very most often we see them also done at EOT+12 weeks, and then again at EOT+24 weeks. EOT+12 weeks has been time frame most considered a "sustained" vrial response (SVR). But ... techinically, UND at EOT+6 weeks IS a SVR (but it has just been sustained for only 6 weeks versus 12 weeks) - it's just dif than when most people get a VL at EOT+12, to mark a EOT+12 week SVR, that's all. 

(If your EOT was about Jul 3, then for this 6 week VL, you must have had this blood draw about Aug 14? - is that right?).

Are you very sure they won't be doing another VL (after this EOT+6 week one), until 1 year from now? 

Being you responded SO wonderfully (with your first and early UND at only 4weeks, ALT nice and normal at 13, everything in your favour to win, a low F score, and pre-treatment load under 6 mil), and, as shown by being UND again at EOT+6 weeks, indeed you were an excellent candidate for ony 8 weeks of treatment. These conditions all bode well for nice sustained response, whether that be as early as EOT+6weeks, or 12/24 weeks or 1 year!

I am glad you will have your thyroid tests coming up next - hopefully we might see that has just vanished, all by itself! Maybe. I hope so. We'll see.

Do let us know how they find your throid now (now that you have been finished with the harvoni at least for a little while). Please do keep letting us know how you feel and how you are doing.

I am very happy for your EOT+6 week UND - looks good on ya!

What was your ALT and AST this time? C.

So I just had my 6 week post Blood test Not detectable.  Yeah  He wants to see me in a year because he dose not expect any changes.  Yeah.   I am still somewhat fatigued and still have some tinnitus. I am getting my brain less foggy and my dexterity is coming back.  I am seeing my PCT next week since my thyroid levels are still high. When do the side effects end?

Bilbo626 wrote:

---

I took my last pill last night I'm Done

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 Congrats Brother!

I would like to comment further on the accuracy of the HCV RNA Test.

Personally I feel this is where the "Sustained" aspect of SVR comes into play. 12 weeks from last night, (84 days from now) you will take another blood draw. When that one comes back UND that will establish a Sustained response to treatment allowing the Medical Records to reflect Cured.

I believe they will continue to drop the time required EOT to Cure =?

The incredible short life of the Virus is to me the obvious key. You can only be <12 for so long and then it is impossible for the virus to reemerge. The Dragon quickly replicates or it ceases to be.

Have you ever wondered how the Dragon stalks us?

  http://www.epidemic.org/theFacts/hepatitisC/lifeCycle/

To me this is a fascinating short read. I am one of those, "if you are going to do something TO me, I am going to study you." Kind of guys.

In my Home The Dragon is Dead. You know if I were to say... "the dragon was mortified." Most folks would think, the Dragon was thoroughly embarrassed. That is kind of how we use the term today. The term is used to signify shame.

Nope.

It means "To Kill". Just play with the term mortal a bit and it becomes clear.

I am not seeing folks that are UND at EOT having a relapse on Harvoni. Further I would even be so bold as to say those folks that are UND at SOT = 4 weeks have MORTIFIED the Dragon, provided they continue the mop up to EOT.

At any rate it does not matter what I say. You are going to second guess things for the next 12 weeks. Trust me and remember I said this... We all did the same thing.

Again, Congrats.

JimmyK

Generally hep "tests" are very accurate, but there are dif "hep" tests, just "initial" antibody detection, and/or "qualitative" and "quantitative" tests. There can be situations/conditions where antibodies might not be detected, at first, when your disease is in "progress", or in transit (so to speak). In hep c testing, if you show a pos antibody test, you can count on it being accurate, that they have found the c antibody in you, then the only question left is whether you have chronic hep c, or, whether you beat the infection off by yourself in the past. (Someone will still show pos for hep c antibodies after they are cured with hep c drugs, or if they were one of the lucky ones and successfully defeated their hep c infection all by themsleves.) A "first" positive hep c antibody test then requires further testing, usually the PCR (RNA) "quantitative" test (your VL) to confirm whether an infection is active or not. It's "complicated" to explain.

(In general, in my book, it is not unwise/unreasonable to "re-test" when ANY blood test (not just hep c) is "questionable" as a pos or a neg, or not the expected result, appearing too high, too low; false pos's and false neg's can and do occur in varoius lab tests, or may "appear" that way, sometimes for a myriad of reasons! - so, in some cases, repeat testing although it may be expensive, inconvenient or redundant, can be helpful info. The adages apply ... can't count chickens before they hatch; measure twice, cut once; the safer than sorry rule of being surer about things.)

It would help to know what kind of first test you had (that was "neg") and the second test you had that was pos (after your heart procedures) and the timelines of same.

What were all your heart procedures (over time)? Just being nosey, as I can't really recall you mentioned much of this before.

Great your family doc (or hep doc?) has ordered your fuller thyroid panel, you are right, you and he may just need to follow this well, test and wait and see what is found and what is required in response. Like Tig, maybe your thyroid blood work will just right itself, by itself?

How's it going today? Are you trying to get more time off, for more rest?? Hint, nudge. I am thinking you are not getting enough time off to do nothing, smell the roses, or to savour that UND!  C.

Bilbo,

Don't fret (yet) about your thyroid test! Yes, convey the thyroid test result (and ALL your lab results) to your family doc (like the hep doc said to). Your family doc will probably order you a "repeat" TSH blood test, and, likely (I hope) some other thyroid blood tests as well. Your family doc may order these right away, or, he may wait, until you have finished with your HCV treatment first.

It could just be a one-off, who knows, but it should be checked out further, and repeatedly to see if any abnomalities persist. It's possible your thyroid system could be sputtering about in defense of itself, reacting to demands, but it should be established if this is indeed continuing, to what degree, and why, to suss what exactly is wrong, if the bloods continue to indicate something is out of wack. 

If it was me, yes I would definitely want a "repeat" TSH, after I had been finished with the HCV treatment, but along with the TSH I would definitely also want the "whole panel" of thryoid tests (more telling) - there are (at least) 6 further parts to a whole "thyroid panel" ... TSH, free T3, free T4, reverse T3, thyroid antibodies and thyroglobulin antibodies.

You wrote ... "THS 41.50, H, range .30 - 5.0",  (I am assuming typo?, and you mean TSH). My book lists a similar "normal reference range" for TSH, .40 - 5.0 mU/L.

If your family doc does not want to do a "full panel", or, if he is not comfortable dealing with endocrine/thyroid work-up things, then get him to refer you to a thyroid specialist. Endocrinologists do this kind of assessing and work-up in their sleep.

It could just disappear! But, maybe not, so, I would have it checked out, thoroughly AND repeatedly, to be sure it is out-of-wack. There's always something, eh! Just keep relishing that big ole UND!  (BTW - what were some of your pre-treatment ALT/AST's to compare to? These ones below are sure lookin' mighty fine!) C.

Greetings,

I was all set for 24 weeks and at 12 they cut me off. In retrospect I am glad they did. The 12 cured me.

The 8 week course is very effective.

Yes contact the Doctor. He will decide if there are reasons to push for the 12 weeks.

Best of luck and NO Worries.

JimmyK

Hmm, I wondered if this was going to happen - 8 weeks versus 12 weeks.

You can try to ask your doc about the need for 12 weeks, but all of them (insur and doc), may deem an early crash in ALT with an UND at week 4, in a person with a low Fscore (no cirrhosis) and a VL under 6 million, may mean to them, that 8 weeks is a sufficient course length.

I cannot recall which test gave you your prior Fscore of F1, nor what your pre-treatment ALT's were (for comparative purposes), nor can I recall any ALT's during your first 4 weeks, to be able to "see" your ALT crash, but, your VL at 2.8 mil pre-treatment, now down to UND! at week 4, is definitely a nice early crash! Just what everyone wants to see.

8 week therapies work perfectly for many people. Many people, that fit the parameters, are routinely treated with 8 weeks of Harvoni and are perfectly cured. Bonus happens to be a short treatment time. 8 weeks versus 12 weeks is a decision only your doc can make.

Savour your nice early UND!  I would ask, but you may not have any luck getting them to agree you need 4 more weeks. C.

Bilbo!,

The sound of your VL (and probably your ALT), crashing! - https://www.youtube.com/watch?v=p-U4p3r48BU, and, the sound we are all making for you, in response!    heehee  https://www.youtube.com/watch?v=Jd-22sVAryY

Congrats on a very hard won and a very well-deserved Und! C.

Well I called my Doctor they said my thyroid levels are off and I might want to get my Primary care doctor to look at it. They also said my viral load is undetectable.  

Week 5 is done.  I was late for work twice since I had to run back in the house to hit the bathroom.  Hmm I wonder if that's why bathroom has a Black Eye.  Yesterday we received a nasty-gram from our insurance company telling us that they would not pay for anymore specialty medication from a local Pharmacy only from Cigna's mail order pharmacy.  I called them and explained what happened.  The specialty pharmacy rep explained that when Walgreen's gets approval to fill it locally The Insurance company is in effect purchasing this Drug for you and you just pay the copay. This is why Walgreen's is being so grabby. It is loosing $10k-$15k in profit each refill.  I tried to get the testing lab to send me the results of Mondays test. They told me they could only release the results to a Doctors office any doctors office.  So I said let me get this straight, you can only release my test results on my blood to somebody other than me? Yes Sir that is correct.  So this week I get to put on my armor and get my test results from my doctor and tell Walgreens to back the hell off and  any refills of this prescription.

Bilbo,

Gotta hand it to ya, you can sure muster through things, no matter how you are feeling! - you are doing so well, under trying times - especially noteworthy is your abilty to push yourself to work like you are - I have a feeling your business is VERY busy, and you are VERY motivated/dedicated to it? 

 ... "Wednesday was terrible. It seemed like everything inside wanted to exit as quickly as possible. My head and body and skin hurt. I Still had to go to work" ... 

Just because you have been able to keep working like you are, doesn't mean you should be pushing yourself this much. Is there not SOME way, some staff, something you can orchestrate, that will alow you a bit more "down time" at home.

It is good you are cooperating with the "program" showing up for all these time-consuming bloods, etc., but I am not sure (at all) that your "rest" factor is really being addressed - please think about it - how you could get a bit more rest in.

Not only did I have to go for VERY frequent bloods, (a very strict trial schedule) on that same day, I had to be examined by the doc and have other tests done, EVERYTIME! It was an "all day" event (the bloodletting and doc exam/appointment day), a five hour drive one way and a motel stay overnight, 5 hour drive back home the next day! Now, mind you I am retired and had no real demands being made of me, so was easier for me than you.  

I am not at all surprized they want to physically see you at the docs office, in my book they should be asking you to come in for appointments!, for good thorough following. 

My lab results never seemed to come fast enough for me! Good you asked for your last labs, you will get them, and you will get these 4 week ones as well - persevere.

You are doing a fine job of dealing with it all, including getting through that horrendously long delay at the start. Keep mustering. I hope some of these symptoms start decreasing more and more now. And, i hope you can figure a way to get some more rest/time off even if this is a busy time. 

Ah, the lovely sound of only one or two pills rattling around inside a near-empty bottle!  C.

Just tell them you're smarter than their average patient and will wait while they prepare your copy. They can't deny you a copy, you paid for it and have a right to it. Perhaps they could educate their patients about the results, instead of keeping them wondering. That can be more stressful than anything. I have yet to see any of these new DAA's provide anything but promising and morale boosting test results. Regardless of the length into treatment!

Congrats on the end of bottle #1  

You both realize you have been carrying on for an entire day, about getting or having been high. Do I need to be concerned?  lol

Each day is a better day, make it so...

Alright, you're good to go! When do you drop the first Nuke? Get hydrated well beforehand and keep it up!