Hep C Discussion Forum

Canuck · Guru

RE: Hep C Geno 3 New Member here about to start Epclusa

HepCGtype2 · Senior Member

Well, I hope you are right Lisa and this is nothing more in the long run than Hep C related, somehow and/or that it all magically goes away with the eradication of Hep C.

Thanks!!!

Loopy Lisa · Guru

Hey HepC3,

It can also be the meds, some people have different reactions than others. I am not really familiar with Epclusa, I stopped following reports after I was cleared. I hope whatever it is clears soon. I eat chickpeas and they certainly don't have that affect on me, but then again, I haven't had IBS for months since I cleared, nor liver crumbles.

Good luck and I hope you sort it!

HepCGtype2 · Senior Member

Well, I finally started the treatment, Epclusa as of 3 days ago. Not sure how long it takes before some have side effects?

I cant give all the pertinent Hep C info you all have as your signatures but will do so in a months time, when I have my first blood test.

In the end, I got better.
Went to a Gastroenterologist and was given a diagnosis I expected, IBS.
Do I believe I necessarily have IBS?
That remains to be seen but not ruling it out.
But if it is that, I know i can overcome it.
The one variable for IBS that is interesting is that when I had all 3 attacks, I was on a diet of chick pea cold salads.
I have since learned that chickpeas are one of the most difficult to digest.

Waiting for a colonoscopy.
IBS seems to be a *disease* that doctors attribute to almost anyone with digestive problems.
Waiting for the results of the colonoscopy but if it does not produce results, I shall insist on a scan, a camera that is lowered into the stomach.
Personally I believe I have a bacterial infection within the stomach. I worked with people coming in from all over the world and a co-worker came down with one particular type, the name of which escapes me now but the symptoms were all the same as mine.
A couple of weeks on a certain antibiotic cleared it all up.

In any event, I was so sick through June/July I have learned what to do and what not to do if for any reason I become sick again whilst taking this Hep C drug.
I know at the very least I could manage, even if at my worst, to take the once daily pill and keep it down and just not eat or drink anything for a few hours but have a feeling without the chick peas, I might not aggravate it.

The CPAP issue was not the cause but certainly was contributing to the gas/swelling in the breastbone/stomach area.
I futzed around with the settings and lowered them by half, and started the machine again and this time all is fine.
While i was ill my body was being thrown off in aways I had never experienced before.

It was creating vertigo which was not behind all the throwing up but I believe contributed at certain moments.
I was led to Probiotics as well which has helped immensely.
As soon as I took them, I felt my right ear become extremely itchy inside, then my right inner eye and then a small rash on the right arm for a few hours that was itchy.
Since they its all cleared up and the stomach seems settled.

So ONWARD for Epclusa!!!!!!!

-- Edited by HepCGtype3 on Monday 7th of August 2017 06:17:07 PM

Loopy Lisa · Guru

Hello everyone, I had a quick read through, but being so late I started to get triple vision. :D

I hope all your problems are solved soon, sounds a rough ride, but doing this treatment is a must, take the burden away and sort all the other issues.

I wanted to quickly add something about Geno 3. I was a geno 3b, I've never had a fatty liver and my biopsy revealed my liver was great. I was probably infected for 20+ years. I don't want people to worry and fret about being a type 3. There was another person that had 3a that had a slightly fatty liver, diet sorted that baby straight away and his liver is great.

Now, happy treatment and celebrate the days til curing. :D

Canuck · Guru

Hep 3,

So glad you had the nice neighbour guy at least to bump heads with. I do understand the predicament you were in.

Sometimes a days wait in ER, if that did not kill you first alone, they would likely have just loaded you up with a litre of IV fluid, electrolytes and some gravol and just booted you out the door again.

I'm just so sorry you had to go through all that, and for that long!, but so relieved you are now able to keep fluids and stuff down now. Sounds dreadful what you went through. So very glad you are on the upswing now and are turning a corner. Hey, too bad your neighbour doc buddy had not made a house call and given you that litre of IV fluid! Now that would have been handy under the circumstance!

Good thing you have faith in your healing powers, you do have to listen to your own 6th sense on these things. You sure have had a very unfair share of the weirdest, most unlucky things to befall and happen to you - but we have faith in you too and in your good judgement, your karma will and IS changing now - we will it! Rest and recover. smile C.

Observer · Guru

Wowzers I am so sorry to hear of your symptoms but am so glad your intuition bopped you on the head and you stopped with the machine. Getting that ballooning chest must have been so frightening.

It is crazy hard trying to figure out some of the damages our long term HCV has wreaked on our bodies.

I still struggle with immune system issues despite being HCV free for a year and a half, but it's only about 25% of what I was going through when the dragon was replicating and destroying cells and the issues seem solvable now when they didn't for so many year.

I hope you get your appetite back asap and get onto those life altering meds.

A

HepCGtype2 · Senior Member

Hi Canuck.

Yes, I am acutely aware that I needed to see a good doctor but i truly was incapable of travelling to one.
I was also aware of the potential risks i was taking. I was that ill.

I have a neighbour that specializes in medicine and did his early 3 year training as an emergency room doctor, and I quickly saw him last week and asked him if he felt i needed emerg.
He didnt feel i yet did, but that if this continued another 2-3 weeks without being able to eat, that yes, i would but felt that i would be wasting my time going in last week and would have sat around being ill there for 10-12 hours for no reason.
So I did feel that I made the best choice for myself at the time.

I had faith that my body would heal itself, which it is now finally doing. I thought it would have started to do so at about the 12th day mark, rather than 3 weeks in. That was all.
So yes, now I am just drowning myself in water, only water in preparation for Esclusa.

Hi Tig:

I am not really sure what happened, to be honest.
Ive used that machine nightly for 3 years with 100% success, or so I thought.
I had a slighter version of this happen a year ago for the first time. But i still used the machine then, as did a second time about 2 months ago, but neither of those 2 times were anywhere as bad as this time.
But once I was fine, each time, I continued with the machine and was fine.
But over the past year, I have wondered several times why I felt as if my upper stomach area, just below the breastplate was looking baloonish to me. Completely disappeared now.
The frightening aspect was trying to fall asleep without the machine, so conditioned mentally was i to the idea that I could not sleep properly without it but I have slept like a baby just fine.
So why the machine turned against me, I dont know know yet. Did i ever really need the machine, or do I not need the amount of air I once did? Off hand I cant say but right now, i am getting my strength back and will look into all that as soon as I am fully better.

The only one thing I can say from all of this is having had too many doctors, one for Sleep apnea, one for general health, one for liver, etc...........it seems to me that there are just too many cooks in the kitchen here and none of them are talking to one another so I have to consider getting rid of all of them and starting afresh, aside from the Hep C Liver doctors and just having ONE doctor really looking at everything.

Anyhow, hopefully when I next pop up here, it will be to say that i am 100% healthy enough to start these pills, which I wont do until I am......but i believe I am now on the road back..........and will soon be healthier all round :)

Edit: But yes, am acutely aware that i need to discover why the drop in hemoglobin and whether or not there is something worse to come, behind it, etc.

-- Edited by HepCGtype3 on Saturday 15th of July 2017 04:31:51 AM

Tig · Admin

I'm so glad you finally got some answers and hopefully are feeling better with each day. What an awful discovery though. Your favorite bedtime tool has been causing this the entire time? You literally flipped a switch and things started to improve? I have heard of that happening before, so it's true! Seriously, I'm sorry it took this to find out. I used a BiPap machine for a couple of years and found it much easier on me in general than the C-Pap. You haven't had a good couple of weeks. Things are looking better and I would wait to get started on treatment until you're back on top. These are easy treatments, but you need to start strong and stay that way. You're right, you don't want to be throwing up any of these $1000 pills, ever, if it can be avoided.

Work on getting back to fighting strength and build your fluids up well ahead of your start date. These drugs demand proper hydration. Let us know how you're feeling and check in before you get started. Hang in there and take it easy.

Canuck · Guru

Good GOD!

You been this ill, this long! Oh dear!

You poor thing - but man, I would NOT be diagnosing myself! (I know, we all do it), but generally (when it is us, or one of our own), we are just NOT objective enough to suss out the most likely/probable things! - but mind you .... you do seem to have some very good theories going here! You take a chance (going it alone) on your own. Your issues do sound complex and hard to "untwine", even though you have made good attempts to do so by yourself.

Still, I cannot understand why you would not find someone (anyone) to take you to the doc, for an exam and HIS ideas, or at least to let him have a look at you and discuss your ideas as to what is wrong ... I would still be consulting with a doc about all of this, and I still think you should get someone to take you.

Now, in this still-precarious "state", you are NOT in ideal shape, at all, for a good start to your HCV therapy - you SHOULD be assessed/re-assessed. Not just a lick and promise "I'll go to the ER if I get worse"!

Perhaps a doc visit may not end up helping one iota, but still, it was (and is) the right thing to do. You have managed to "tough" things out, but doing so, all on your own, is not advised (in my book).

These things are so hard to figure out after the fact (in retrospect) - give your doc a chance to digest the current things you go (went) through. He should have been given the opportunity to examine your "bulge", listen to your chest, palpate your abdomen, temp, BP, etc. - just some bare basic minimums - harder to suss things later when things have changed.

I recall one time I was just so ill with a gastric flu, and I had run out of tylenol for my fever, in my fogged weaken feverish state, I phoned the pharmacy and literally begged them to deliver me some - they refused - I just felt so helpless. So, I know what you mean about feeling NOT physically able to get out to the doc - but use your best judgement - in retrospect, i should have asked someone (not the pharmacy) to assist me in getting the pills, and then, also asked them to take me to the doc - but i wasn't thinking well enough to do it at the time.

Sorry you are feeling so sick. C.

HepCGtype2 · Senior Member

Hi. Thanks for the above messages. Still in hidey hole. Just about to come out of it.
Couldnt make it to the doctors.
Was way too ill.
My doctor kept calling me trying to make an appointment and each time the phone rang, I spent another 15 mins with my head wrapped around the toilet so i finally turned it off.
3 days ago I wrote an email, expressing my symptoms, that i did want to come but truly, i was just too ill to make it.
I did say that if i got worse, I would head to emergency.
I was sent an electronic file with all my pertinent info should I do do, 5 hours later.
But between the email I sent and the one i received, I finally had a good idea of what was wrong.
I was diagnosed with bi positional vertigo about 10 years ago, meaning, I am fine as long as i dont sleep on my left side, or have a dentist, etc, pull my head quickly to the left.
Either action causes my inner ear to twirl a bit and brings on a few seconds on nausea.
Because I can only sleep on my back, like a baby I might add, some doctor decided I must have sleep apnea and hooked me up with a machine.
I loved that machine.
Put my mask on and before my eyes even closed, I was out like a light for the next 8 hours.
But....

I have been developing, on a somewhat thin body, this balloon like upper chest below my breastbone.
Was led to believe that this was a symptom of fatty liver, a result of Hep C, etc.
A couple of fibre scanes, i did notice that the technician noted i had a lot of gas, although, if i did it certainly was not coming out anywhere but remember a few comments.
Anyhow, I was unable to eat for 3 weeks.

Been sipping on small sips of water, then throwing them up, slowly drinking Ensure, and hopefully keeping it in for a few hours but invariably it came up.
Suddenly, 6 days ago, a McDonalds chocolate milkshake came to mind and I finally found something i could keep in so had one per day.
An hour before I wrote the doctor my symptoms, I tried to have some lipton chicken noodle soup and immediately noticed afterwards i could taste it all coming back up.
At which point on came a flashing light..

Looked up symptoms for acid reflux and everything i had been experiencing, fell under that. Mouth welling up with clear liquid just before i threw up each time etc.
Never had that before but found a TUMS right away I knew i was finally sort of on the right track.

Turns out the machine for Sleep Apnea, I guess all that air being pushed into me was making me really ill. Stopped using it and 48 hours later, I am 85% better.
Still being a bit careful, as I think all of this assault on my body has slightly triggered the vertigo so I do think that its partly to blame but the machine, pushing that air was killing me.
And funny enough, this balloon chest thingy I had developed has gone right down flat again.

Anyhow, throughout all of this, I have had the pharmacy call me and I was to call them back today if I hadn't heard back but will do so Monday and it appears that I will be starting these pills within a week or so.
Just as well for i would not wanted to have taken them, only to have thrown them up 5 mins later.

This weekend, am just trying to get my appetite back, which I have lost completely.
2 ensures and 2 small yogurt today - so far all i can handle.
By next week, I think its time to somehow find a new doctor.
I am aligned with a a large urban city liver hospital network and think its best I look there next week for a clinic or a doctor as i havent any faith in my own.
I need to find out if there is anything more serious going on causing, what could be GERD, or.......well hey, I am not a doctor but.....whatever it is, I need to get to the bottom of it with a doctor that is able to.

Right now, just sleeping tons.

Guess my body needs to heal

If this is aging, you can have it :P

Thanks for good wishes.
Be in touch soon with the start of my Hep C treatement

Damn i do write a lot dont i

Hemoglobin dropped from 137 Jan 16, 2015 to 102 June 16, 2017. So um, yes, I do have to find out why

-- Edited by HepCGtype3 on Friday 14th of July 2017 10:01:09 PM

-- Edited by HepCGtype3 on Friday 14th of July 2017 10:02:31 PM

Tig · Admin

I second that motion! Drag yourself in for that appointment. Your doctor needs to see you in this condition. They need to see how people are affected by this disease. Could be something entirely different, too. Let them make the call, but let them know how you're feeling. The more they know about you and your condition, the more help they can offer. These are new times for all things HCV. The more data sharing and conversations we can have, with anyone willing to listen, strengthens us as a whole. We are our own best advocates and once you're through all of this, you'll be able to help someone else understand. The things you're learning now, how to navigate the system, etc., can make someone else's journey easier.

Okay, now I'll just add that I'm sorry you still feel so lousy and totally understand the reason you feel like finding a hidey hole and staying there! Don't allow the blahs to get the best of you. There's a Dragon that needs slaying and your name is on the personnel roster for the month of July. Get ready to rumble....

Canuck · Guru

Do you mean missing (possibly postponing) your Weds appointment, because you are feeling so shatty? If so, don't do it, go to your booked appointment please! Please get someone to take you, drive you, accompany you, but go. Feeling poorly the way you do, is all the more reason to go on Weds. Think of someone to take you. If you are feeling this bad today, call in your markers, and get some nice person (friend, family, neighbour, or someone in your circle) not only to assist you to be able to get to and fro your Weds appointment, but to help you today, and tomorrow. Know when to bite the bullet and ask for a little assistance. You may be just surprized how willing people are, to lend a hand, when we are under the weather and in a bit of a tight spot, most people WANT to help if they can. Find someone and let them. smile C.

HepCGtype2 · Senior Member

Ok, thanks all. I think i have an idea now what to bombard my doctor with this Wednesday. If as sick then as I still am today, will have to put it off though until the end of the week or beginning of next. I couldnt even step outside at the moment. But now I have a direction in which to communicate properly with her.

Just had a fibrescan recently, the results of such I will get when I see her.
I am an urban person so can get anything, anywhere, if feeling well.

Presently entering the 3rd week waiting for the Epclusa to be given to me, so as to start all of this.....they really do drag it out now dont they? lol

Canuck · Guru

Hey GT3 (or 2, as the case may be ... hee hee, we'll just sit tight and wait for that other GT shoe to drop firmly.) smile

I am sorry for all you are going through, and have been through. It's a lot!

Tig is good at assessing, thinking things through, advising. I cannot think of much else to add to what you and Tig have brought here. These things are sometimes very diffiult to tease apart to dissect to see what caused what and when and why (as evidenced by a plethora of looking and thinking by your docs)! You have also been trying your best, to get, and do your own figuring and sleuthing - credit for that. The antibiotics theory was a good initial thought are far as a factor even if that did not pan out over time we see.

I am glad you get to try to quiz the doc (on a multitude of things, your list will be long, write them all down, take a list with you so you don't forget any item, or leave any query out) on Weds., I hope it helps. Given this new news (to us), GI hx and current/re-current GI troubles, I would not forget to ask your doc if they ARE going to give you an abd. U/S, may be a waste of time as far as any "direct" or observed answer to your GI troubles, but you never know, mainly I think you should have one done because I believe it is just good basic practise to have one done during the assessment stage before HCV treatment, and given your "extra" GI symptoms, and given your old kidney issues, an U/S can be all the more justified and it cannot hurt to see if it can offer any addtional info to the confusing GI picture, but mostly, just to have a looki-loo for anything outstanding regarding your liver and adjacent organs/systems picture. I would want one done. Don't forget to ask if you are chronic B or resolved B.

I cannot recall if that fibroscan was current or 1 1/2 years ago, but that might be another painless item they could update, U/S is also painless and an easy non-invasive thing to do.

What is not easy is what you are going through, and, I seem to recall (on some other thread?), you had problems with logistics and travel? So, it may be a pain to go and get an U/S, or another fibroscan, if it is far from you, but like I said, if it were me I would be more comfortable knowing i had an U/S done, even it did not show anything much. I am just big on current fibroscans too!

Constipation? You have to, got to, figure out how to get much more water into you! Ask your doc, if you should be on any small daily doses of psyllium things, like metamucil or something - increase your regular dietary fibre - dunno. Have you ever experimented with probiotics, gotta ask the doc these things. Hydration is going to be key on the treatment front and on your gut front.

Was it you who had trouble with size of pills and swallowing? If so, take heart, it may not be as bad as you anticipate. We had someone here with this worry "can't swallow a big pill", and they found (and I did too) that the shape of the pill, it's smoothed slightly angled shape, and the good slippy coating made it far easier to swallow than anticipated. C.

Tig · Admin

Hi,

Once you successfully complete treatment and the virus has been eliminated, your body will begin a process of repair and recovery. Once you stop the frontal assault of the virus, in most cases so does the progression of damage caused by it. There are some things that take longer to resolve, if ever and that can be cirrhosis and the advanced problems caused long term infection. There are a lot of extra hepatic manifestations caused by this virus. We've talked about them a lot. Joint pain, muscle aches, fatigue are well known problems with this disease. When you stop the virus, your body starts to recover and just FEEL better. Nothing happens overnight, but it happens and if you don't stop this virus, I guarantee you, it will keep advancing and causing more damage along the way. It's not uncommon to feel great for decades and then all of a sudden you begin to feel like POO on steroids. Totally normal and frequently discussed by other HCV sufferers. You will feel better, not overnight, but you will . feel . better!

Antibiotics can be rough on your stomach and digestive track. I've had the misfortune of having to take enough of that stuff over my life to be a walking germ killer! I found eating yogurt with them is a great benefit. Antibiotics always cause diarrhea if I don't start right away. They just destroy every good bacteria you have in your gut. You might also get some relief from a good probiotic, there are many available over the counter. Try to keep things balanced and it may help you with the nausea and other not so fun side effects. As with your Hep medications, you absolutely must stay hydrated!! Water is magical, remember it as your best friend! Photo below

HepCGtype2 · Senior Member

Thanks Tig56

So, does that mean that if any of these issues are Hep C related, that the damage is done and this medication will only slow the progress, but not really make me feel better? Energy levels, for example. My Hep C doctor told me that many Hep C patients complain of energy loss but there isnt proof that they are related. He went further to suggest that perhaps the medication for such acts as a placebo but in the end, if one feels they have gained energy than its a plus.

This has all been rapidly taking place over the last year.
If you were to see me in person, I am extremely healthy looking but without any definite diagnosis of anything, it seems to me as if this might all be a result of Hep C finally breaking down the body, but i am not sure.
I dont want to brush off other possible problems, wrongly associating them with Hep C.

Perhaps I will learn more this Wednesday.
Admittedly I wouldn't mind having my blood retested so I do have an exact accounting of whether it is Type 2 or 3.

All in due course it seems :)

Edit: Problem is, until something becomes repetitive, its difficult to rule out the source of problem. I have only taken antibiotics once in my life, as a child. When this attack first happened a year ago, I had been telling my dentist that i felt my gun was tender but sort of ignored. It was so faint, I wasnt sure myself it were. 5 weeks later it blew up and showed my whole side of the gym was infected and i required a root canal. Put on 10 days of antibiotics and about the 5th day in this nausea, etc took place. Up until it happened the second time, 2 months ago, it was thought that it was just a poor reaction to antibiotics. Only now,a 3rd time, I realize that wasn't it.

-- Edited by HepCGtype3 on Sunday 25th of June 2017 03:56:34 PM

Tig · Admin

Hi Shelly,

Your story and the description of the misery you suffered through was powerful stuff. I'm sorry you had (have) to go through any of it. It's difficult to say whether it is caused by HCV, but there are many similarities. HCV is systemic, by that I mean it affects every part of you. Since it has a primary goal of destroying your liver, and your liver being part of the digestive system, your bathroom issues fall right in line with some of Hep C's plan of attack.

If I had a choice of genotypes, GT 2 would be it! They are all easy to treat now, but the damage from the virus comes from years of chronic infection. Geno 3 has been found to progress faster, and comes with a subset of additional problems, like steatosis or fatty liver. So, getting your diagnosis of GT 2 instead of 3, is better news. You'll do well and will be rid of this disease in short order.

I suggest you try to work on your hydration skills before you start. With your history of losing things from both ends without much warning, you need to start treatment amply water logged! Don't let yourself get dehydrated, that's so important. Work on good nutrition, stay active and you'll be done in no time. Hopefully you're going to experience improvements in all the areas that have bothered you so much in years past. Positivity is everything! Good luck... smile

PS: You might want to speak to another doctor and get a second opinion. Sounds like you need answers and less symptomatic relief. That's nice when relieving discomfort, but resolution of the problem seems prudent.

HepCGtype2 · Senior Member

UPDATE: (until seeing family doctor, one prone misdiagnoses, on Wed )

I believe, I am Geno 2, after all.
At least it appears that was the official diagnosis on the public health report - 2011.

But as you state, it wont matter as it is the same drug.

Experiencing something odd though. Wondering if is common to Hep C users?

Developed Constipation issues a few years ago ( assumed it was aging)

1 year ago, became very sick, hugged the toilet bowl for about a week.

Not to be rude but i didnt know which end of me needed it more.

In-between I felt hot, cold feet, and very sleepy. I slept a lot that week.

There was a slight pressure on my right side but it didnt come across like kidney stones.

Having had that 15 years ago, that was sheer agony. This wasnt but like a bad flu.

Couldnt drink water, felt too heavy on me and would send me rushing to the toilet so i had to sip it very lightly but had better luck with Ensure.

5-10 pounds loss after that week, so there was an upside lol.

2 months ago, out of the blue, it happened again. For 10 days, non stop.

Indeed afterwards I became repulsed by former foods I had loved. Whilst and immediately afterwards, constipation was not an issue.

About 2 weeks ago, reverted back to the old constipation issues. 2 nights ago, while mildly brushing my teeth, although I had felt perfect, I gagged and threw up my days food.

Since then, same old story, except still constipated but cant keep liquids down, repulsed by food, cold feet, sleepy but no where as badly as the first two times that this took place.

Thought i was starting to feel better and brushing the teeth really carefully 10 mins ago, had me face down in the toilet again.

Could be a kidney issue, not sure but will enquire of my family doctor on Wed but mentioned earlier, she has a bad habit of all these diagnoses and a whole new set of pills.

Really starting to think shes keeping the medical association busy, unnecessarily, on me alone, so presently not putting a lot of faith in her.

BTW, had my blood tested again and i am in the normal range, before pre-diabetes. I think she might have jumped the gun on that diagnosis as well but that's besides the point.

Am just curious if this digestive problem, i believe it to be, is common for other Hep C sufferers?

Should be starting the meds anything within a week or two.

Cheers!!!!

-- Edited by HepCGtype3 on Saturday 24th of June 2017 09:26:23 PM

-- Edited by HepCGtype3 on Saturday 24th of June 2017 09:40:29 PM

-- Edited by HepCGtype3 on Saturday 24th of June 2017 09:41:17 PM

Tig · Admin

Epclusa is a pangenotypic drug and will cover all genotypes. Geno 2 has been one of the easiest genotypes to treat in the past. By easy, I mean responded well to treatment when some geno's didn't. Thankfully all genotypes are responding well, especially to Epclusa.

Considering your diagnosis of steatosis, I won't be surprised if genotype 3 is correct. They seem to go hand in hand.

Bread and pasta are full of starches/carbohydrates. They are difficult to digest and are full of starch sugars. I'm not surprised you witness a prolonged blood glucose elevation after eating them.

Ask for copies of your labwork when you go in. They used to archive them, but now it's only temporary in some offices. My first Hepatologist destroyed all of my medical files after 5 years because I had selected a different doctor. I missed out on the opportunity to participate in a trial for lack of records. The lab was no help either. So get them when you have the chance. They have to provide them on request.

Good luck with the new doctor!

HepCGtype2 · Senior Member

Thanks Canuck. I sure could have used all that information beforehand. Now I know what i need to find out.

Potential slight setback but am waiting to hear from the doctor.
I changed liver doctors a few years ago.
Have just discovered an earlier diagnosis, from the first of Hep 2 which I believe to be a mistake, at this present moment. I am pretty sure he too told me it was Geno type 3 but i now see on his sheet it says 2.
So this discrepancy needs to be fixed and am awaiting a call back as to whether my blood needs to be tested, one last time in order to be 100% positive as to its type.

Dont know why the online site for my new doctor is only showing the recent results as i have been with them for a few years now.

Having my blood tested, re: diabetes (Type 2) tomorrow again, every 5-6 months or so but the last time it was in the 5.8 range, with Metformin.
Daily tests show me often at 4.5 but if I eat anything such as bread or pastas, it can move higher into the 7+ range, 48 hours later.

So, will check back in once i have it confirmed i am Geno 3, not 2 and it seems I need to go to my doctor and get all my past test results and in future be more proactive with regards to such.
Think I have to become my own mini doctor because i am not feeling as confident in their abilities as I thought i should :)

Figures there is now a discrepancy between 3 and 2.....lol
I swear none of my doctors are as straightforward as your post. I only wish lol

Shall be back soon.

Canuck · Guru

That's great that your epclusa start is eminent! smile

I trust that your doc has, on file, your immunity levels to hep a and b (immunization records) and that at some point he has reviewed any need for you to be immunized for flu or pneumococcal, docs will have preferences as to whether they think you should or should not be immunized or re-immunized for anything - but, all docs should (at minumum) re-check your blood for a hep b surface antigen, prior to starting hep c treatment. You can call in and ask if that blood test was done.

You mentioned ... "really need to get rid of this Fatty Liver issue." ...

I beg to differ (sorta) ... the priority (what you need), is for your HCV infection (that is sticking up like a sore thumb, waving ugly flags) to be gone, first and foremost! Let all else fall where it may, some things may start sorting themselves out sometime after your HCV is gone. (I do very much like your experimentation with 5 meals a day though - that could, and maybe is, proving beneficial! Type one diabetes? - just diet?, and are you taking any meds for it, something like metformin?)

Your water intake "training program" will be the next important priority to institute, along with your epclusa.

One step at a time.

I am wondering (what with the explorations about your kidneys/stones, them following your fatty liver, and them following your HCV) - just what imagings you have had done??!! (Recently, or, in the past few years?) Abdominal ultrasounds?, any CATs? I can't recall how many years ago you said you received confirmation of your HCV.

Your fibroscan report here (from 1.5 years ago!) does not indicate that the machine they used had CAP capability - steatosis measurement. It just shows a kPa measurement of 6.2 which equals an Fscore of aprox. F0-F1. For HCV, your old aprox. degree of fibrosis, or liver "stiffness", from 1.5 years ago scored about F0-1.

If these are recent bloods tests, and, if the creatinine is "serum", then your "abnormal" at 112 mol/L, is somewhat elevated from the listed "normal range" of 50-90umol/L (for women). It is good to have access to old labs so you can compare to current ones, during and after treatment. You should obtain and retain them for your own ref, and for sharing with us, if you choose to. You DO have to go by whatever scales your lab uses (what their "normal" reference ranges are) - normal reference ranges should be written right on the same paper right beside where your lab results are written.

In addition to the regular labs everyone is interested in when curing their HCV, it would also be interesting to follow your before/after and ongoing blood sugars/A1C's, as well as maybe your lipid profiles.

You and have I have quite a few parallels (in mysterious confusing unwellnesses, prior to HCV treatment)! You make me giggle at some the the very unfortunate events and "too thorough" work-ups you have had, all you have been through to date, but only because of how you have lightheartedly phrased them and because I can relate to being stymied just like you as to "why" things were happening. I sense and know some of your frustrations.

Thanks for sharing all the history, it really helps, in thinking things through for ensuing conversations/observations or questions that may come up. smile C.

HepCGtype2 · Senior Member

Hi. Am about to Start Epclusa,

I believe within a week, or a bit longer. Everything has been okd as of this morning. Just waiting for the doctor to write the prescription.

Its been a trip. Fortunately I have a sense of humour + in retrospect typed too much.... lol

Sort of introduced myself in another thread but here is my info that i have to date.

Had a fibroscan 2 weeks ago. My records are only showing one from Late 2015 ATM but I believe the latest is more or less the same.

Wont be seeing my doctor again for 6 months as i saw him this past Thursday and am learning more here on this forum than i was ever told.

Believe I might have contracted Hep C in 1982 through a botched small surgery that required a top up of blood due to a mistake made on their end.

But never angelic so could also be have been later with lifestyle mistakes, drugs Or even a nose piercing done by a friend that in retrospect, doing others likely was not sterilized properly. Who knows?

Was always told by the Liver doctors not to worry, that my numbers were low, I was not a drinker (in my favour) and rather than risk drugs 5 years ago that would make me very sick for 6 months, to hold off until a drug such as Epclusa was available for better results in the long run.

Am mid-late 50s but always active until 5 years ago.

Out of the blue I lost energy, dramatically. Asked my family doctors for tests but was told I was fine but no one could explain the energy loss.

This then created a cycle. Normally never more than 110 pounds, I started to gain weight. Never a pop drinker or sugar user, I began to crave Pepsis. Welcomed the burst of energy it gave me.

THat obviously came with bad side effects, and likely made the energy cycle worse, a weight gain and then Diabetes. ( since shown to be very low and likely shall be off of the meds for such soon )

But no one could help me gain energy. I was told to start taking Vitamin B + and Vitamin D ( in hindsight, ROFL )

So I gained more weight, vicious cycle and all but it was also exasperated with Fatty Liver. (WTH did that come from? ) lol

Then I started to get skin cancers, not the deadly kind, just the ones that needed freezing but where most get 1-2, I had about 50.

No matter what small thing took place by comparison to everyone else, I ended up with the extreme version as well as one very early pre Melanoma spot, since dealt with just fine.

Basically, everything started to fall apart and as I had always been, so I thought, very healthy and active, this all seemed 20 years too soon.

All my doctors treated me like this was all normal to some degree, a sign of aging...who knows but I really wasn't happy with any of it.

Then came a misdiagnosis last year. Dont ask how. Still not clear on this but suffice to say, I was misdiagnosed with Cancer with numbers out of the stratosphere,

which had them naturally assume it had metastasized.

Even all the specialists were stymied so i received the best doctors at the tests i think possibly wondering how i seemed to feel and look so good considering I shouldnt have been.

For 6 weeks I was assuming that i was likely on the way out so HEP C was the least of my concerns lol...but then, magically it all disappeared and the oncologist told me to buy a lottery ticket, that i was perfectly healthy :)

But....still a very decreased energy level.

So long story short, it now seems to be that all of this might have been my body starting to break down from Hep C??????

If so, why didnt the doctors tell me that, even just once, instead of pointing at everything but?

In any event, when all is said and done, I am still pretty healthy or at least feel as if i am but really need to get rid of this Fatty Liver issue.

For some bizarre reason, out of the blue my energy sort of rebounded 2 weeks ago, at least enough to undergo daily walks. I have been eating differently, 5 small meals per day rather than 3 larger ones - all good so far.

So here are the details i have, so far.

Chronic hepatitis C genotype 3 Treatment naive\.br\

No FH liver disease or HCC

Genotype 3, Treatment-Naive,

ALT 21-40, No Cirrhosis,

We will plan for SOF/VEL 12 weeks

Progressive renal impairment related to her metabolic risks will need to be assessed by nephrology. HCV RNA requested today. ALT 17, AST 15, creat 112, Hgb 109, Plts 278, Alb 44\.br\

HemoGlobin (Hb) is at 109 g/L Abnormal

Red Blood Cells (RBC) 3.80 x 10e112/L Abnormal

Hematocrit (HCT) 0.328 l/l Abnormal

Creatinine112 mol/L Abnormal

Everything else in the normal range

1.5 year old Fibroscan

Date/Time of Fibroscan:

201511241545

Probe:

M

Liver Stiffness:

6.2

Valid Measurements (0-20):

10

Total Measurements (0-50):

10

IQR:

1.0

IQR/Median %:

16

Quality of Scan:

Adequate

Should add that I had a kidney stone history starting in 1999 that as far as I know has been fine since.

Or so I thought another test seemed to show that I was full of kidney stones but a day later on a second, even the kidney specialist was stumped, I didnt have any.

He wasn't sure what to think but something is obviously going on there...

-- Edited by HepCGtype3 on Tuesday 13th of June 2017 05:13:16 PM

Hep C Discussion Forum

Legal Disclaimer: