Author Topic: Finished 12 wks of Harvoni Jan 8 and not feeling good (Read 422630 times)

Bob V · « **Reply #200 on:** May 17, 2015, 05:26:19 pm »

Lets remember that those who post in threads like these are not a representative sample... The posters post here because they are having side effects.. So if any attempt is made to correlate the data, there should clearly an entry for those who experience either no sides, or just the most common, eg, occasional headache or fatigue.
--------
I agree with Paul on this.

Bob V · « **Reply #201 on:** May 17, 2015, 05:29:19 pm »

Sorry, I don't know how to delet the second post.

Katie · « **Reply #202 on:** May 17, 2015, 05:46:05 pm »

Quote from: hepcme on May 17, 2015, 04:27:28 pm

Finished my back patio...painted all the trim and cut a door , made a dog door framed it out and painted it now have to hang it -then paint the french doors then off to the front to put in pavers and plants...so nice to be back but afraid to over work with this heart fluttering in and out ...what the heck ??
Had to cover a secret hole pass thru from kitchen in my bedroom closet?? dont'know what that was about but sealed , mudded, textured and painted the closet...looks grand...don't know if I am going to sell...I have a bucket list .. :}

hepcme: I am impressed and evidently you can measure better than you claim!

I am starting to get concerned for you due to the palpitations you are experiencing. Please get to the doctor as it is not something to take lightly! Maybe Stop ALL supplements and caffeine including energy drinks and see if they stop and just reintroduce one thing at a time. Vit B12 will overstimulate me if I take too much or on an empty stomach so there might be something you are taking or maybe something you changed fairly recently.

I mention this as our doctors really aren't into supplements, in fact I was told to take 1200 mg of calcium due to my age, and so I faithfully took the dose recommended and both wrists seized up with arthritis so bad I couldn't do anything, even when using braces. I had a difficult time pulling up my jeans or removing a pan off the stove. I went to 5 different doctors and they said I was stuck with it which really depressed me because I am a worker! After suffering for months I was thinking about how it came on so suddenly and what I was doing differently and it dawned on me I had started taking calcium so I stopped. Within 2 days the pain lessened and in two weeks I was back to normal. Every doctor knew about the calcium supplements and not one suggested checking the level!

I just wanted to give you that example as we all have to listen to our bodies and be pro-active.

Congratulations on your project! GOOD JOB! I still haven't gotten my bookcase put together. The weather has been so sunny I have been gardening! When living in a rain forest, one must make the most of it!

Katie

hepcme · « **Reply #203 on:** May 17, 2015, 08:03:28 pm »

I am post 14 weeks Harvoni TX...but thanks for the warning on supps....I stopped all my supps a month before TX...took nothing while on Harvoni but still had some labored breathing, dizziness and heart flutters toward the end of TX..I have doing great , last couple of days had heart flutters again...I think maybe I should not drink the new coffee I bought...I only have one cup in am but this is New Oleans...Chickory...yum yum but I bet it is strong...I water it down ... something about chickory that is suppose to be better than coffee...can't rmemeber..

hepcme · « **Reply #204 on:** May 17, 2015, 08:16:47 pm »

I am always off on measuring, that is what putty is for ...LOL LOL
I am an artist by trade so I can faux anything ....LOL but I am getting better...I use my eye which is always closer than my measure... I am usually right on que..amazes me even...smokin...lol anyway good idea...it sure sounds like Arrythmia as it happens at night..but you are right I will take inverntory...not alot really,=multi vit., biotin, turmeric vit.C ,cofee ?? creamer...oh my , have to think on that one...I will switch back to reg coffee , no chickory...
see, I just got done eating, taco blk beans, brn rice cheeze , salsa, cilantro...maybe it is the dairy ..and getting the flutters...ahhhh....I was looking into dairy ..some time ago ...I will do process of elimination
MAN I DON"T DRINK BUT ONE CUP AND A LITTLE DAIRY>. gave up drugs , alcohol, men, sex , job, cigarette, family, meat, mcD's , french fries , KFC, Arby's reubens !!!!...the list goes on and I am glad for allll of them ...BUT MY COFFEE??

mario555 · « **Reply #205 on:** May 17, 2015, 08:36:17 pm »

Why quit coffee? It's one of the rare pleasure I still have and it is actually good for your liver! There is evidence that coffee in sufficient quantities will help your liver! I drink 4 cups a day (2 monstrous cups in the morning).
As for quitting the rest? Not for me!

Katie · « **Reply #206 on:** May 17, 2015, 09:32:15 pm »

Mario...it's the heart palpitations from the caffeine maybe! Strong coffee can bring that on and once you are sensitive to caffeine, just a little can set your heart off. I know. Been there, done that.

hepcme: there are some wonderful decafs out there now. I make it for my coffee snobs and they don't know the difference, in fact I receive compliments! It wouldn't hurt to try and see if it helps. As one gets older our pleasures are certainly cut down. I still haven't given up my ice cream and hope I never have to, even though I should but it's like, what's left for comfort on a stormy, rainy winter night? HA!

I still stand by having your thyroid checked to at least rule that out.

Bob V · « **Reply #207 on:** May 17, 2015, 10:29:45 pm »

hepcme
It might be a good idea to see a doc just to be safe.

Marrio
I'm with you on the coffee, I LOVE my morning cups of coffee. I generally have 2 cups when I get up.

Katie
Yes caffeine can cause heart palpitations in some people. I had them from caffeine but not coffee it was tea once.

mario555 · « **Reply #208 on:** May 17, 2015, 10:47:54 pm »

Katie, others, it is my love of coffee speaking. Given the fact many hep c sufferers are restricted in their food habits I was so wonderfully relieved when I found out coffee was good for me! On the other hand, I agree that some people could get heart palpitations from it. For the ones who don't, Enjoy!

On another subject. I finished treatment 2 weeks ago (24 weeks treatment) and I don't feel so hot. I did suffer 2 bouts of heavy side effects during treatment but now that I am finished, I feel close to those same sides. I have tinnitus 7 out of 10 in one ear, very heavy dizziness when I get up after lying down and a general feeling of unwell. Anybody knows how long it takes to get out of those effects?

hepcme · « **Reply #209 on:** May 18, 2015, 12:41:32 am »

wow, this is cool so far, no heart flutters tonight...just went for a swim and sauna got some magnesium and cayenne and feel OK..so far so good...I read it happens mostly at night and when one lies down...that is what happen last night was up till 2am....lovin life again....love my new house ...next month will be one year I have been here...thanks God....sweet

Debula · « **Reply #210 on:** May 18, 2015, 10:42:27 am »

hepcme-please also get your thyroid function tested (TSH, Free T4 / Free T3)
That is how I found out I had a thyroid issue because I was getting the heart palpitations and it turns out I was hypo

hepcme · « **Reply #211 on:** May 18, 2015, 12:12:13 pm »

Ahhhhhh thanks that is hope....I was hypo at one reading on labs and dr just kept overlooking it for other more important lab issues ...I had so many with HCV ...H ammonia H feritin H VL H enzymes H tumor marker H tsh (slightly)
thanks will do

hepcme · « **Reply #212 on:** May 18, 2015, 12:24:04 pm »

Now I like that ....your body hears everything your mind says....hmmmm

hepcme · « **Reply #213 on:** May 18, 2015, 12:27:49 pm »

Kate that is unbelievely believable...about that calcium wow...yes I find listening to that still small voice we have is always the best answer...if I be still long enough LOL I am a worker too...I am so blessed to be able to do what I can and I love what I do do ....
thanks

dragonslayer · « **Reply #214 on:** May 18, 2015, 02:13:51 pm »

Quote from: Debula on May 18, 2015, 10:42:27 am

hepcme-please also get your thyroid function tested (TSH, Free T4 / Free T3)
That is how I found out I had a thyroid issue because I was getting the heart palpitations and it turns out I was hypo

What's interesting about this is that heart palpitations are symptomatic of HYPERthyroid, not HYPO!!

hepcme · « **Reply #215 on:** May 18, 2015, 02:26:38 pm »

Thanks dragonslayer ....IT IS hyperthyroidism...
tachycardia = over active thyroid dahhh Ok process of eliminatation

Debula · « **Reply #216 on:** May 18, 2015, 02:57:07 pm »

Dragon You are correct! I suspect that I was Hyper at that time. After meds I am on the hypo side now
But I guess what I was getting at is that I had no idea until this started happening to me and I went to a cardiologist and he found nothing wrong with my heart but said I need to see someone for my thyroid. And now I am finding out or I read it somewhere that my Thyroid problem could have been caused by the HepC

hepcme · « **Reply #217 on:** May 19, 2015, 12:49:03 am »

Mario and Mugwamp...the girl from Canada has still not heard on gettin her meds started Solvadi /Riba she said:
My hep doc has sent the medical stuff back to the government and I got a bit mad at the Dr he said " I have millions of patients waiting to get these meds as well as you" so I told him that I doubted it was millions but hundreds and that I was more concerned with MY TXat the moment and as I had made all the effort to contact the government I thought he should make more of an effort to reply to them for me ... I wasn't rude but I was Pi**ed off. so I'll call the Government on tuesday..
ANY THOUGHTS FOR HER TO DO...WHY ARENT THEY ACTING ON THIS AND WHY DO THEY JUST PUSH HER BY...THEY KNOW SHE IS BARELY HANGING IN THERE!!!!

WholeFoods · « **Reply #218 on:** May 20, 2015, 10:18:58 pm »

Just wanted to post back with another update.. I'm 5 weeks post EOT. Seems stamina is beginning to increase for me, long as I keep stress level in check and take things slow. Again, this reeks of some type of cardiovascular to me. I did come down with some kind of fibro flare and OLP last week that knocked me down for a couple days. A few folks out sick at work too. In desperation, I started taking vitamin d. Feeling some improvement, I went to the nutrition store and got some top shelf multivitamins to slowly start on. I really think it's helping. Trying to focus on staying well fed since I lost a lot of weight on TX. Resting as much as possible too, particularly after big pushes. Hope others are starting to feel a bit better and the new ones starting TX be aware of a possible bump at the end!

hepcme · « **Reply #219 on:** May 21, 2015, 12:29:49 am »

Had a great two days, thought the heart thing was resolved...then afternoon today was bad again...all day nag of deep heart flutter and slight pressure pain..it is like deep. beat..like caffeine racey but I don't do caffeine just a cup in AM and really not even a full cup...that was at 6:30 am and the heart thing didn't even start till 1-2pm...had a great two days slept great, woke up great, alot of dreaming...but then I had a few taco chips and it started...salt? hmmmm blood pressure is low 107/60...all good there very strange...

Katie · « **Reply #220 on:** May 21, 2015, 12:40:01 am »

hepcme: Please have your thyroid checked.

hepcme · « **Reply #221 on:** May 21, 2015, 12:57:53 am »

Kk Katie going in next wednesday have and appt PCP , they can't get me in earlier want me to go to urgent care ...yeah right...I did that with my eye infection and they just gave me eye drops that didn't do a thing...I thought I had pink eye from my granson ...they said they didn't know what it was could just be allergies and gave me some anithistemine drops didn't work...went to eye doctor for eye discharge in both eyes and itchy she said it was a virus infection, I said OHHHHH I HAD A VIRUS A BIGG VIRUS...she gave me antibiotic drops and stroids ...NADA NON NOTHING ...sometimes I wonder
Eyes aren't itching anymore and not pink and reddish but still have discharge ...had it too on Harvoni at EOT....

hepcme · « **Reply #222 on:** May 21, 2015, 01:02:07 am »

weird...ticker is off beat...but beating 69 beats a min...BP is fine...can feel heart beat in stomch , beats off beat, small pounding and feels racey but seems OK when I take pulse...this is just crazy...headache (slighi)
I'll wrtie all this down for doctor but he will probably order stress test...well, haven't had one done in 6 yrs...
anne
thanks

hepcme · « **Reply #223 on:** May 21, 2015, 01:22:09 am »

Kate how about I take some iodine

Katie · « **Reply #224 on:** May 21, 2015, 01:39:26 am »

I wouldn't suggest any self medicating as it might be what you don't need. I have felt my heartbeat in my stomach and it was when I had high cholesterol and arterial plaque building up. I changed my diet and dropped cholesterol 45 points and it all went away.

There are pressure points my acupuncturist showed me but it is difficult to explain. You use your right hand and press on where the throb is, just above the navel and use your left hand pressing between the neck and the shoulder on the right side. Kind of in that soft area above the shoulder. It really worked for me so try it. Do this lying down. Let me know if it works.

If it gets bad I suggest you go to a clinic or ER. It isn't anything to play around with as it has been an issue for you for awhile now.

Katie

hepcme · « **Reply #225 on:** May 21, 2015, 01:51:50 am »

still deep beating but did take a huge deep breath...that felt good.. :}
thansk Kate going to try to sleep I am tired of all of it..still lovin life if that akes sense.. maybe that is it...I am just too excited over living again...

Mugwump · « **Reply #226 on:** May 21, 2015, 08:18:21 am »

Quote from: Debula on May 18, 2015, 02:57:07 pm

Dragon You are correct! I suspect that I was Hyper at that time. After meds I am on the hypo side now
But I guess what I was getting at is that I had no idea until this started happening to me and I went to a cardiologist and he found nothing wrong with my heart but said I need to see someone for my thyroid. And now I am finding out or I read it somewhere that my Thyroid problem could have been caused by the HepC

Much is not known about how HCV causes autoimmune problems. Long before I was finally diagnosed with HCV in 1993 I went on thyroid replacement hormone because of non specific Graves disease (your immune system attacking the thyroid) causing my thyroid levels to fluctuate wildly. So I have been through the wringer and can tell you that a surplus of thyroid hormone in the body causes these symptoms,

Headaches
Insomnia
Increased and irregular heart rate and elevated blood pressure
Hallucinations and irrational thinking ( when your levels are too highly elevated for longer than the half life of the molecule which is 3 days)

For me it was years of wondering why one day I had the strength of a low land gorilla and the next had felt like a weakling with a headache and lack of sleep. I had these problems for many many years all the way back to when I was first infected with HCV

The reason why an excess of thyroid hormone in the blood causes mental aberrations is well understood. The hormone is not excreted and instead breaks down into a toxic substance which effects brain chemistry if not absorbed.

The only way to accurately diagnose either hypo or hyperthyroidism is to monitor the TSH (thyroid stimulating hormone) levels for a long period of time, a one time reading can be misleading so can a reading of the hormone levels in the blood and mean little unless they are extremely elevated or unusually low.

I will tell you that while on Harvoni the headaches, elevated blood pressure and anxiety that I experienced was not because of thyroid problems. My TSH readings remained stable during treatment so no changes were made to my prescription for Levothyroxin and it has never varied in over 25 years. Although I had to stop eating while taking the med a few years back because my TSH levels were elevated for a short period of time and I started to get really run down.

Anxiety is a difficult thing to treat and I can assure you if your thyroid levels are elevated the first thing that happens is you bounce off the walls then suffer extreme anxiety and strange mental aberrations.

Over the years there have been a few times when I made a mistake and accidentally overdosed. I am in the habit of warning my wife if it happens because my thinking will go wonky for a day or two until the levels stabilize.

If I forget to take the pill on time then the opposite happens I suffer a day or two getting my energy levels back to normal.

Hang in there everyone and try not to worry about too many issues at the same time while on treatment and after treatment.

"it is hard to remember that what you really needed to do was drain the swamp when you are up to your ass in alligators!"

Cheers
Eric

Debula · « **Reply #227 on:** May 21, 2015, 11:34:43 am »

Agreed about the Thyroid. And I know the feeling!! When my levels are off I am mostly sooooo tired and have leg pain. Although I don't think monitoring TSH alone is sufficient.
We need to know what our Free T4 / T3 levels are. Because how we convert the T3 is the big issue. My levels are all over the place but I feel better with the NDT that I take (WP Thyroid) and my doctor is treating based on how I feel and not the numbers.
Hepcme- I would make sure your doctor does TSH and both Free T3 & T4 test and also request to see the results yourself.

Cheers!
Deb

hepcme · « **Reply #228 on:** May 21, 2015, 11:57:49 am »

Oh boy , now what is T3 and T4 I thought that was TSH and they all were a thyroid test I go Wednesday and can't wait to get there..this AM is great and I am not experiencing any side effects...but I haven't eaten yet...that seems to start it but what do I know...

Debula · « **Reply #229 on:** May 21, 2015, 12:20:56 pm »

I found this that might help explain better than I can

"Of the several “thyroid hormones” produced by this gland, there are two that are clinically relevant. One is called thyroxine, also known as T4, while the other is named triiodothyronine, commonly referred to as T3. They are both heavily involved in energy management and a variety of biochemical and metabolic reactions and functions throughout the body. While T4 is more abundant in the bloodstream, it is T3 (which is derived from the conversion of T4 in the kidneys and liver) that possesses the most potency and is thus responsible for most metabolic activity."

Also here is a really good website OR you can Google "Stop the Thyroid madness"

http://www.stopthethyroidmadness.com/

I am glad you are feeling better and I hope you see a doctor soon about the heart palps

Cheers

Deb

hepcme · « **Reply #230 on:** May 21, 2015, 12:29:33 pm »

Well, it is still early, I walk on pins an needles wating to see when the heart flutters come back and why ...but this is another avenue to read up on ...I know my mom has thyroid issues...and I did register low at one point in my labs but nnothing to claim to anyway but anything can change and happen...see Wed...thanks alot :}

dragonslayer · « **Reply #231 on:** May 21, 2015, 02:30:59 pm »

Quote from: hepcme on May 21, 2015, 11:57:49 am

Oh boy , now what is T3 and T4 I thought that was TSH and they all were a thyroid test I go Wednesday and can't wait to get there..this AM is great and I am not experiencing any side effects...but I haven't eaten yet...that seems to start it but what do I know...

The endo I was seeing told me, when I asked him for the free T3 test, that he doesnt order it because the number is not reliable because it fluctuates a great deal.

Debula · « **Reply #232 on:** May 21, 2015, 04:53:21 pm »

Quote from: dragonslayer on May 21, 2015, 02:30:59 pm

The endo I was seeing told me, when I asked him for the free T3 test, that he doesnt order it because the number is not reliable because it fluctuates a great deal.

Hi Dragonslayer
You need a new endo because the Free T3/T4 is more reliable then trying to go by TSH alone
I have done A LOT of reading on the subject and I have heard sooooo many people say the same thing you are saying. Read up and go back and insist that they do it for you. Plus you should be able to get the tests you want. Another thing is that a lot of doctors are not prescribing NDT's (Natural Desiccated Thyroid) meds. And that is also wrong because a lot of people are doing so much better with them since they combine T4,T3 and some other T's But some doctors will not budge. Read some of that website I posted(stop the thyroid madness) has a lot of good info.

dragonslayer · « **Reply #233 on:** May 21, 2015, 04:59:49 pm »

Deb, I think either you respect the alternative/naturopathic route or you dont.. I personally dont! For example, take coffee enemas.. Unless there are peer reviewed double blind studies to show that this 'therapy' does anything at all. Im going to turn the other cheek (pun intended!)

Debula · « **Reply #234 on:** May 22, 2015, 09:00:35 pm »

Quote from: dragonslayer on May 21, 2015, 04:59:49 pm

Deb, I think either you respect the alternative/naturopathic route or you dont.. I personally dont! For example, take coffee enemas.. Unless there are peer reviewed double blind studies to show that this 'therapy' does anything at all. Im going to turn the other cheek (pun intended!)

Hi

. I'm not sure I follow. I am not following a naturopathic route. Actually one of the reasons I asked to switched to that medication was because it contained less fillers and binders because I thought maybe those things were causing my itching. (Turns out it was the hepc all along). But since I did switch, I have felt better and my T3 /T4 levels are much better. I could have had similar results with synthetic medications so I'm not advocating the NDC (pig hormone) but I think patients should have a choice. And I think that following TSH alone is an old school way of thinking and diagnosing on TSH alone is just wrong
Anyway, maybe I misunderstood what you said.,

just wanted to clarify.

MEG · « **Reply #235 on:** May 22, 2015, 09:31:52 pm »

Hi all, thanks so much for creating this thread. I'm now almost 5 weeks post treatment and still undetected at 4 weeks post..

I'm so sorry to hear some are also having continued side effects post Harvoni.

Some of you may remember that I was quite sick during H therapy. Virus's/bacterial sinusitis, profound fatigue, depression(!).

Since my last dose of Harvoni, although no more colds, the fatigue has persisted although I feel subtle improvements this week.

Tinnitus: began late in my therapy and continues. Somewhat worse. Last nite I actually noticed it enough to distract me from falling straight asleep.

Blurred vision. I'd heard of people having this on treatment but this past week(again 4 weeks post EOT) I'm noticing that when I want to read something, I must have my reading glasses as it's all blurry. This is new. Up until just 2 weeks ago, I could gt away with reading a book or this computer screen without them---a strain, but I could do it. Now, no way.

I'm glad the topic of thyroid came up. I've been on synthroid for over 20 years. My TSH is low, my T4 and T3 are at the high limits of normal yet I gain weight so easily(packed on almost 15 pounds while on Harvoni and unable to exercise), the fatigue is still a nemesis. Perhaps it has nothing to do with the thyroid and my body needs the time to recover from all those colds, the Harvoni, etc.

Best all. Thanks again, so much, for being here. Hepcme===please get yourself to a doctor(!).

Hi Islandgirl, hi Mel(!) I know you vicariously thru your friends here ;-) May we all experience the grace of healing---in all manners of our life...Meg.

Islandgirl · « **Reply #236 on:** May 22, 2015, 10:24:00 pm »

Hi all! I haven't been posting for a while - it's been one thing after another and then the last 2 and a half weeks both my mom (91 and lives with me - for those of you who may not know) have been really sick with some cold/flu type bug going around and are both on 10 days of the same anti-bacterial antibiotic. It's been all I could do to put together some sort of nourishing soup and do the minimum to take care of both of us. We're some better but both still coughing pretty badly and just not over the darn stuff. No pneumonia, so that's good but mom's coughing so hard I worry she might break a rib and there are so many things that she is unable to take due to age, heart & COPD. We'll get there.

Like many of you I didn't do as well as I'd hoped after completing TX in February but just grateful to he UND and hoping September's test will remain so! You probably know the feeling, but it's hard to determine what might be a side and what's just going on with me otherwise. Thanks for being here and know that I'm here for you all too whether I'm feeling up to writing or not. Sending healing energy and love to all. ....Islandgirl

Katie · « **Reply #237 on:** May 22, 2015, 10:36:10 pm »

I was wondering about you Islandgirl! Feel better! There is nothing worse than a summer cold with congestion. Hope you mother does OK as I know that is hard on the elderly! Take care and I am sending you both a ((((HUG)))) right now!

Katie

WholeFoods · « **Reply #238 on:** May 22, 2015, 10:47:06 pm »

Hi island girl, it sure has been the year for a lot of cold and flu bugs! Hope we get a more nurturing summer. I keep getting intestinal upset, but have had that since gall bladder issues caused surgery 4 years ago. We can only hope with time some of our health issues will fall away as our bodies adjust to living without the nasty virus. I am preparing for that not to be so much the case to prevent myself from becoming too depressed if it doesn't come to pass. Just knowing the virus is out of the equation will be good enough. After living life one day at a time for this long, gotten pretty good at it. Many of us are no longer spring chickens, but there may be other things we can start to incorporate into our lives that could help improve things... things that we may have avoided before because we had to focus on a delicate balance. I'm thinking massage and easy gym workouts. Yes, I wasn't able to do those things the last several years as my body started breaking down, maybe from the battle. Menopause was very hard on me so probably one of those people whose body reacts to the slightest changes. All the women in my family have hormone sensitivity. Anyway, glad you were able to post. Sounds like you have a full plate, bless your heart. Glad you and your mom are on the mend.

Islandgirl · « **Reply #239 on:** May 22, 2015, 11:00:18 pm »

Thanks, Katie! Hugs definitely needed and welcome! Wish I could see those beautiful Northern Lights with you - I can only imagine the awe and joy a person would feel as they take it in. I hope all is well in your world - feel a hug from us too! ....Islandgirl

WF, Thanks so much for writing too! No spring chickens in this house either and I'm thinking along the same lines as you. I had mom scheduled for a massage but had to put it off as she was coughing to badly - need to remember that I need things like that too

Take care of yourself and thanks for the reminder that we need to be patient with ourselves and find ways to add some positive, healing activities back into our lives. Be well. ....Islandgirl

Hugs too!

dragonslayer · « **Reply #240 on:** May 23, 2015, 12:08:11 am »

Quote from: Debula on May 22, 2015, 09:00:35 pm

Hi . I'm not sure I follow. I am not following a naturopathic route. Actually one of the reasons I asked to switched to that medication was because it contained less fillers and binders because I thought maybe those things were causing my itching. (Turns out it was the hepc all along). But since I did switch, I have felt better and my T3 /T4 levels are much better. I could have had similar results with synthetic medications so I'm not advocating the NDC (pig hormone) but I think patients should have a choice. And I think that following TSH alone is an old school way of thinking and diagnosing on TSH alone is just wrong
Anyway, maybe I misunderstood what you said., just wanted to clarify.

Hi Deb.. I guess it was because natural pig hormone (Armour Thyroid) so far as I know is generally only prescribed by naturopaths; I just inferred thats where we were headed.. There's not a lot of hard data proving one more effective than the other, but there are a lot of anecdotal reports by patients favoring the pig hormone. If I could get my regular doctor to try it, I might do that.. But I sense it would require switching to a naturopath.

hepcme · « **Reply #241 on:** May 23, 2015, 12:36:39 am »

I am most illiterate about this.. but saw this one...
actalin thyroid supplement
waiting to see Doc Wed. for my thyroid test then I will join in on yourt research ...I am tired of all this research and if it isn't an issue I am going to move on to the next ache and pain life can dish out...lol so far I am doing great and just a slight heart palipatation tonight (in two days) for about 15 min... I hoep it is over...

MEG · « **Reply #242 on:** May 23, 2015, 02:33:35 pm »

Hello Islandgirl!

It's so great to see you! ;-) It sounds like you've had your hands pretty full with mom---I hope that as the spring advances that she feels better. I can attest to how severe this viral season has been.

Yes, get yourself a massage too. As much as I want to give myself some sort of reward for making it this far, I keep putting off a massage for myself as well. My dog's vet bills this past months have crimped on my budget ;-( He has awful hip dysplasia, 11yo and I'm trying to keep him with me and and as comfortable as possible...The vet is going on a luxurious vacation as I write this..Oy vay..Well, it was great to see your post and I'm sending you warm and hepcFree;-) hugs for this holiday w/e.
Meg.

MEG · « **Reply #243 on:** May 23, 2015, 02:53:19 pm »

@Katie

It's the Northern Lights! It's their fault you're still tired ;-)

What a sight that must be to behold. I had a friend who lived in Wasilla for a long time. She is a photography buff and her pictures were out of this world...

Tell them to send you some of their energy!

Hugs, Meg.

hepcme · « **Reply #244 on:** May 23, 2015, 04:44:50 pm »

WHAT DID I MISS ?? my good friend just passed from Wasilla and has been asking me to come up there for the last two years...I just did't see going to the cold, or rain or snow but wanted to see Alaska , then I heard about the mosquitoes and they love me,, her family still wants me to come up...I am a sun bird...and love the sun...hmmm but you guys are making it sound tempting...

Debula · « **Reply #245 on:** May 23, 2015, 07:23:59 pm »

Quote from: dragonslayer on May 23, 2015, 12:08:11 am

Hi Deb.. I guess it was because natural pig hormone (Armour Thyroid) so far as I know is generally only prescribed by naturopaths; I just inferred thats where we were headed.. There's not a lot of hard data proving one more effective than the other, but there are a lot of anecdotal reports by patients favoring the pig hormone. If I could get my regular doctor to try it, I might do that.. But I sense it would require switching to a naturopath.

Hi Paul. Ahh I get it. Like I said the only reason I switched was because I thought the additives in Levo were making me itch. But my General Practioner is really cool. I asked him for WP thyroid and even though he hadn't heard of it he gave it to me. (I tried Armour but got heart palps). If you are doing ok on synthetic then stay with it. My itching only stopped after I started Harvoni. So yippee for that!
Hi everybody else!
I want to see the Northern lights once in my lifetime. What a cool thing to just be able to see them so often Katie
Island girl- I hope you and your mom are feeling a little better
Where do I sign up for a massage?
Take care all!
Deb

Islandgirl · « **Reply #246 on:** May 23, 2015, 07:37:46 pm »

Thanks MEG! Man I know about those vet bills as a long time dog owner/lover. Not to mention adding in some grooming - those dogs that don't shed do carry a grooming fee penalty lol. My dogs are my lifeline - always there, always love me no matter what. For several years now I've chosen rescue dogs and it's extremely rewarding to see what love, patience and good nutrition can do - building trust comes slowly but makes all the difference. I have an 11 year old Maltese who is very attached to mom and a 4 year old Powderpuff Chinese crested that I've had since she was just a year - she had been badly abused by the breeder and lived the first 2 months on or under my bed - she's still careful with new to her people but has improved 4,000%! She has a nerve injury from the abuse that sometimes causes her to tilt sideways and almost go into a spasm but comfort and reassurance have done more for this than meds that don't really help much anyway. The breeder sent her to a kill shelter because she wasn't perfect enough (after abuse?

) but she's perfect to me - she's my girl.

Have you tried Closequin DS? It's a joint health supplement and has worked well for my dogs with arthritis (sometimes also need a pain med) You can get it cheaper at Costco or on line than from the vet. I'll keep you both in my prayers.

Mom has started to run a bit of temp again and the antibiotics are almost gone so if this keeps up I'll be calling the doc again on Tuesday. Thanks to all of you for your concern and well wishes for both of us. Love you guys! ....Islandgirl

PS, I did buy several herbs today to put in my pots off the patio and I'm counting on the energy to get them planted in the morning lol, they smell heavenly and made me feel good to do something positive! hugs

MEG · « **Reply #247 on:** May 25, 2015, 11:37:23 pm »

@Islandgirl...

I'm sorry I'm just seeing your post tonight. Why am I not surprised that you're also taking care of 2 poor pups who have been through so much. I'm sending them healing energy too.

Ya, I've tried the glucosamine/chondroitin. Even Adequan shots 2 years ago that helped enormously but then stopped working. Tomorrow he finishes a series of 4 shots of Pentosan. It also builds up cartilage but by a different mechanism. I've seen little to no improvement--unfortunately. The vet added gabapentin(Neurontin) for pain. Simultaneously with the shots but I withheld it until this w/e because I wanted to see if these very expensive injections will work($50/shot)....He's been on Tramadol and an occasional aspirin for a few years now. His liver was sympathetic to mine ;-) and did not tolerate the canine nsaids...

Sooo----we're basically at end stage management at this point. I'm trusting in him and the Universe that he'll not leave for the rainbow bridge until I'm in better shape.

I'm contemplating adopting a puppy depending on how I'm feeling by August. I don't have kids of my own and my need to have an infant has been strong lately. His breeder is having his yearly litter. My guy was actually a rescue from his ranch. He breeds and trains hunting dogs. But at age one, when they found the hip dysplasia he had to be pulled from training.

I hope your herbs are doing well....I've had so little energy that I've not yet planted anything. I used to most of my veggies from seed...loved watching them germinate and grow into babies during the winter. Take macrophotography shots of them. Wish that it was easier to post pix here..

How is mom doing? Will you need to go call the doctor tomorrow?

I'm wishing you all(4 legged family members too!) a peaceful rest tonight.
Meg.

hepcme · « **Reply #248 on:** May 26, 2015, 01:30:02 am »

Wow I am really sleeping well, I am getting such sound sleep ...16 weeks post TX 8 week Harvoni...I am busy dreaming for sure...sometimes exhausted when I wake up and have an emotional hang over...This is for sure -really strange and I am getting so many healing effects, is what I am thinking....I go Wed. to see PCP and have detailed bloodwork done...want to see thyroid...I looked up my record and it was 2012 my thyroid showed hypothyroidism but not that high only about 8 points is that alot? TSH 2nd generation..whatever that means...that is thyroid test ehhh?? I didn't see any T4 or T3 I haven't looked it up yet...I will let doc tell me and if it is scarey then I will do the research...weathere is changing here in AZ , starting to warm up so the dryness is coming in... labored breathing again...but chest pains are less frequent and BP is fine...have lots of energy and finished back yard...now I need some stone...we don't have grass...we don't have water...lol hope all is well with everyone..and your health is balancing out..

Mugwump · « **Reply #249 on:** May 26, 2015, 08:43:29 pm »

Quote from: hepcme on May 26, 2015, 01:30:02 am

Wow I am really sleeping well, I am getting such sound sleep ...16 weeks post TX 8 week Harvoni...I am busy dreaming for sure...sometimes exhausted when I wake up and have an emotional hang over...This is for sure -really strange and I am getting so many healing effects, is what I am thinking....I go Wed. to see PCP and have detailed bloodwork done...want to see thyroid...I looked up my record and it was 2012 my thyroid showed hypothyroidism but not that high only about 8 points is that alot? TSH 2nd generation..whatever that means...that is thyroid test ehhh?? I didn't see any T4 or T3 I haven't looked it up yet...I will let doc tell me and if it is scarey then I will do the research...weathere is changing here in AZ , starting to warm up so the dryness is coming in... labored breathing again...but chest pains are less frequent and BP is fine...have lots of energy and finished back yard...now I need some stone...we don't have grass...we don't have water...lol hope all is well with everyone..and your health is balancing out..

I take it you are already on replacement hormone? If not then the rest of what I post here may not be applicable to you specifically but is applicable to those who are also on thyroid replacement hormone or are undergoing thyroid treatments.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

It is hard to relax when life throws uncertainty into the equation. By all means get your TSH checked. And like I said try to be careful when taking thyroid meds it is not at all like insulin and has a completely different chemical half life and purpose. Be aware when you have taken the med at all times and you will do just fine!

Those of us with thryroid issues and are on replacement hormone have another problem to deal with that can bite you in the ass if not attended carefully as well as dealing with ridding oneself of this curse of a disease.

For me it has caused issues in the past when the timing of taking the med was interrupted by employers and demands of others or anything getting in the way of my regime. Those who really do not know the facts about how important having a stable level of thyroid hormone find it difficult to understand what is essential for those who are on hormone replacement or thyroid therapy treatments.

TSH in the body does not cause a rapid increase in hormone in the blood but if elevated over time it causes a clinically elevated level of excess thyroid hormone to be released by the gland.

For those who have a thyroid that is not working the timing of when and how much hormone you take daily is very important. Unlike insulin the metabolism effects of triiodothyronine (T₃) and its prohormone, thyroxine (T₄) is not set to a fast cycle.

Synthetic thyroid hormone is precisely the same molecule and is thyroxine and it has worked fine for me for over 23 years because I have paid careful attention to the timing of when I take the med. Besides it is cheaper than the process of extracting it from the slaughter house by products and then purifying it because the glands extracted can have all sorts of other compounds like steroids, antibiotics and impurities that need to be removed chemically. You can't just put in a blender and wizz em up into a thyroid milk shake and then sell it!

I am not a doctor but I am up to speed on thyroid problems and how I have had to deal with them.

All the best reaching SVR hepcme and getting effective treatment for any other issues you have!
I have dental issues to deal with but I am waiting for SVR before going to have a failed bridge removed and possibly replaced by a partial.

BUT I WILL NOT TOLERATE any more interruption of my plans to go chironomid fishing this spring... otherwise it will be too late in the season and I will have to use other tactics on the rainbow lakes in central BC. Last year I caught and released Walter but it was not on a chironomid it was on an analogue of the insects that feed on other insects and they are very hard to use correctly. Unlike chironomid fishin' which is like shootin' em in the barrel here in BC!

Cheers
Eric

hepcme · « **Reply #250 on:** May 26, 2015, 09:18:02 pm »

I am not on meds yet ...going to have tests done tomorrow..!!!
pins and prickles are gone today and so is the heart palp as long as I don't push up on my diaphram...lol

JillLynn · « **Reply #251 on:** May 28, 2015, 04:47:01 pm »

Hello friends

I'm just reading your posts......so sorry some of you are not feeling good after treatment. I'm sure you read my posts, I was so sick too.........but NOW I FEEL really really good.

I did get my blood drawn today by my main DR because I had to get some drawn for my hubbys insurance requirements and decided to get my viral load. 24 weeks is June 29 but I want to know if my enzymes are still normal and virus gone. it'll be the same amount of money so why not.

I would say.........some do better than others on this treatment.........looking back I say it was easy.....but when I read my posts remember otherwise for a good part of the time and after.

NOTHING ever will be worse the RIB/INT.......it makes me so mad that my arms, legs and back look i'm a burn victim. I itched my skin right off my body :-(........and I miss being glamorous (wink wink)!!! and it didn't cure the virus. But its a reminder of how much I want to live! Like we all do......a quality healthy life. I'm going to read around and see how those I know from my treatment days are doing.

But YES......I've been feeling fantastic lately.........which is a miracle and I pray for you all everyday!

much love to you

Jill

Katie · « **Reply #252 on:** May 28, 2015, 05:08:04 pm »

Hi there Jill! I love seeing you post as I missed you! It is such encouraging and wonderful news that you are back up and running and I bet doing your nature walks and wildlife ventures!

I feel worse than during treatment and at least as bad before...only different. Absolutely no endurance and my projects on my To Do list are just sitting there looking at me. Even my gardening which is something I always look forward too. Just not the get up and go and push myself, Katie, so hearing you are feeling better, in fact GREAT, is something we all needed to hear. Some folks are really suffering, so I am pretty lucky.

Did you have any lung, breathing issues?

So, please stay in touch and know I am proud of you and delighted you are doing so good. Thanks again for letting us know our lives will get better and soon! Looking forward to hearing how your VL test comes back, as I know those little buggers are dead and none are left to replicate. It is just a relief to see it on that important paper. My next test, 16 post, will be around June 25th! I probably already told you that but I am trying to push it forward! LOL

Katie

WholeFoods · « **Reply #253 on:** May 29, 2015, 09:42:10 am »

I agree on the to do list as mine is getting longer also. Took a long walk several days ago and was down for a couple days after. Work is a problem in that cognitive function wears me out by the end of the day. Despite having had a conversation with my employer, no breaks in workload for me. Thankfully soon I will be forced to take some days off or it could turn into a union issue. I am 7 weeks post TX and the carpet is a mess which is unheard of for me. The only relief I get is after several days of doing next to nothing which is just not possible in my world. The saving grace is knowing this is how my body responds, it took 2 years to recover from surgery awhile back (anesthesia) so I am confident I will get better with time. Must work on not stressing out though.

JillLynn · « **Reply #254 on:** May 29, 2015, 11:31:16 am »

Hi Island Girl!

How are you doing my sister?

Love you!
Jill

Mugwump · « **Reply #255 on:** May 29, 2015, 01:14:01 pm »

Quote from: WholeFoods on May 29, 2015, 09:42:10 am

must work on not stressing out though.

HERE HERE!!
The owner of a small janitorial firm that I have been working for for the last 2 plus years on a part time basis and for peanuts came around last night. I call him HAIRS BREATH HARRY. He manages to get into situations that stress the shit out of himself and others.
This is the gist of the phone call.
Harry;
Eric, lets have a little drink tonight can you get me a mickey of Absolute?

Eric;
Harry, I have told you in the past that I do not drink any longer and if you insist on trying to pour it down my throat our friendship and relationship is over.

Harry, after a slight pause for contemplation;
Ok can you just get me a mickey and I will just have a few so I can relax, we need to talk about next Thursday, I need your help setting up a new contract for a major building my company just acquired.

Eric;
Can do and I am glad that you are starting to get your head above water, just don't wind up drowning doing a backstroke with this one!

After the little 1 hour meeting I offered to drive him home with his company van and then walk home because he only lives a few blocks away. He refused, I have not heard from him so most likely he didn't get stopped or I would have had to do some janitorial work today cleaning his accounts!

So yes working on getting the stress level down in life is important but sometimes the demands of today's political economy are very hard to deal with.

Take care of yourself first and try not to forsake those who are close to you, but sometimes when you are on treatment you MUST just take control of the situation if you are going to ever have peace of mind! After Thursday and our "investigation" into the details of why a reputable janitorial firm made such a mess of an important commercial building, I will advise his as to whether or not the contract is viable on the basis of what I see, most importantly whether or not the contract is worth the effort or if the contract could become a financial fiasco for him.

Then I am going to get the hell away from telephones for a while and see if I can shake hands with Walter again or any of his his relatives. Like Fat Freddy that my brother had a conversation with before he was released. 14 lbs plus for a lake rainbow on the fly ain't nothin' to sneeze at!

Cally Balmoral · « **Reply #256 on:** May 29, 2015, 05:05:46 pm »

I give all of you that are working while taking treatment or those finished and face working every day so much credit. I am blessed not to have had to work. For me, every day is a chore just getting up and dressed. It is also a big deal to figure out what I am going to do that won't make me exhausted that day. I guess its just ......keep on.... getting on.

WholeFoods · « **Reply #257 on:** May 29, 2015, 07:57:22 pm »

Hey Cally, I accept that! It was hard.. my job requires a lot of brain work and when you're tired, that doesn't happen easily. I thought about you all from time to time, folks who are able to be home thru TX. Mostly I just tried to stay positive, keep to myself and be grateful for the miracle happening. I prayed every day, took things real easy, no expectations and had my little dog by my side when I got home. There were days I looked pretty ratty and didn't give a care at all.. dirty hair, no make up, bags under my eyes, lol! It was a tough call to TX now vs. in two years when I retire, but when push came to shove, the real reason for doing it now was because that virus was on the move in my body, I could feel it gaining ground. I was at F2 four years ago. I think not overdoing things is a good course of action. Try not to get down about it, things do get better with time. Thanks for your post.

Cally Balmoral · « **Reply #258 on:** May 29, 2015, 08:13:43 pm »

Thanks Whole Foods......You and all those warriors who carried on your routines during this time really deserve a big HOO HA .....or whatever it is the Marines say in salutation. It's a big CONGRATS any way you say it! Thanks again

hepcme · « **Reply #259 on:** May 29, 2015, 08:24:56 pm »

I would llike some of that energy I had on the Harv -17 weeks ago...I demoed my kitchen and put in the plumbing and electrical for dishwasher...so that new cupboards could come in..today I can barely get off the couch, a rough day...tomorrow is another...at least the breathing issue is not here today or the heart palps...this I hope , shall pass too...kinda scarey if ya ask me...

Katie · « **Reply #260 on:** May 29, 2015, 08:31:42 pm »

Quote from: hepcme on May 29, 2015, 08:24:56 pm

I would llike some of that energy I had on the Harv -17 weeks ago...I demoed my kitchen and put in the plumbing and electrical for dishwasher...so that new cupboards could come in..today I can barely get off the couch, a rough day...tomorrow is another...at least the breathing issue is not here today or the heart palps...this I hope , shall pass too...kinda scarey if ya ask me...

What did the doctor say? Glad you are breathing better! Don't worry about the projects right now. Just take care of yourself and feel better. My To Do list isn't shrinking any either. <Big Sigh> All in good time.

Katie

hepcme · « **Reply #261 on:** May 29, 2015, 08:43:33 pm »

I had to get up at 6am and drive far to get labs done so we will see next week with thyroid and B12 platlets etc...he was so happy for me and said i deserve it I am a good person , how about that ? I said well, you aren't so bad yourself it was your call to gastro that got me the meds ...so he wanted to know if i had panic attacks ,, anxiety, or stress related..NOPE asked if when i work outside and house if it affects heart and breathing ...NOPE... asked if I am in menopause ...NOPE...stopped at 43..noe 62? so he sent me to have a xray of chest and will wait for labs before he sends me to cardio..I had to fast so I didn't get my moringng joe or toast and was not a good day to start and just not there now...I want to do something but I am stuck...guess day is over..good idea ...just take care of self... thnks

hepcme · « **Reply #262 on:** May 29, 2015, 09:10:17 pm »

I been thinkn...this heart thing is like caffeine rush...then I thought, I have one cup 6-7 am and these heart palps dont't happen till late in the day...It is like when I was on TX...had this blasted rush of energy ...and could go go go...then crash...these rushes now come but they don't bring the go go go..I have to slow slow slow down and just let them do their thing...then it stops ...I would guess it is related to TX ..someone knows and won't tell, pharma...I did stop and see my old pharmacist and tell him the news , he ws the one that said don't jump on this med when it comes out watch awhile and see what it does first....I would have been dead by now .. so I roll with it ...I do feel it it is still early in the game...my body took a hard fight with that virus for 7yrs that i know of and 25 after that....it isn't going to heal in 3 mo....But But But.....

Mugwump · « **Reply #263 on:** May 30, 2015, 03:56:17 pm »

Quote from: hepcme on May 29, 2015, 09:10:17 pm

I been thinkn...this heart thing is like caffeine rush...then I thought, I have one cup 6-7 am and these heart palps dont't happen till late in the day...It is like when I was on TX...had this blasted rush of energy ...and could go go go...then crash...these rushes now come but they don't bring the go go go..I have to slow slow slow down and just let them do their thing...then it stops ...I would guess it is related to TX ..someone knows and won't tell, pharma...I did stop and see my old pharmacist and tell him the news , he ws the one that said don't jump on this med when it comes out watch awhile and see what it does first....I would have been dead by now .. so I roll with it ...I do feel it it is still early in the game...my body took a hard fight with that virus for 7yrs that i know of and 25 after that....it isn't going to heal in 3 mo....But But But.....

It is hard to slow down the train sometimes. But this is all I can suggest. Perhaps that is why I work on something other than my treatment when the questions and worries become too difficult to deal with. My train is running wild as well, not knowing if I have reached UND status. But there is nothing that I can do about that because of the pressure on the facility to measure HCV titters and the bean counters in our beloved government cutting back on testing for those undergoing HCV treatment.

In essence the financial castration of the medical testing for HCV VL in BC by medicare has made me scared shitless because of the high level of uncertainty as to whether or not the treatment actually worked for me. However in a very unscientific way I am optimistic that it may very well have worked. Such is the spirit.

But let us put that all aside and move on. I am sure you need to find something to take your mind off what you are going through HEPCME reading your last post was very difficult.

On the bright side up here there is a federal election coming up and I can get even by helping to expose some truth about other things they are doing here on the beautiful West Coast that are severely screwing up our ecology and complex tourist and ecology based economy. Like cutting back on essential scientific services and environmental restoration projects to an extent that the core food chain of herring and needle fish is in serious trouble from over harvesting for commercial fish farming feed, the pet food industry and other factors that are ruining the food base for salmon like, the ongoing permissions to log boom and dock with toxic pilings where the herring spawn.

So because I have some work to do I can easily take my mind off my health by thinking about what can be done to mitigate the damage done to the health of that which sustains us.

You could say that after 24 weeks of treatment and uncertainty perhaps my mind is sharper and more focused than it has been in years because I know that there are many things that I can and do work at that help ease my mind. Now back to writing my libretto if I do not get called out to work tonight. So I still remain optimistic about my treatment outcome regardless of the madness which we cannot control that seems to pervade our daily lives.

Eric

SIXFOOTFOUR · « **Reply #264 on:** June 02, 2015, 12:52:04 pm »

Hi Everyone, Glad i found this thread because I was thinking about posting about post tx health and possible side effects.

I completed 12 wks Tx on May29, 4 days ago. A little more than a day and half (late sat) I started feeling very tired and a little nauseous.

Sunday more tired and nauseous , yesterday

Monday less upset stomach but still in the afternoon extreme fatigue I felt like I could not make the drive home.

Tuesday my nauseous feeling is gone, but still very tired and did not sleep well.

I dont know f it was from getting off Harvoni, but these are definitely different symptoms then when I was on Harvoni.

hepcme · « **Reply #265 on:** June 02, 2015, 01:29:51 pm »

WOW WOW WOW great news...doc called and told me alllllll my labs are in range 16week Post TX -8wk/Harvoni/01/2014....my ammonia was 250 down to 70, inrange, tumor marker was 50 down to 5.5 and all rest is in range ...he elaborate on thyroid or vit B12 I wanted to know and others but will be online on Labcorp this week probably,...he said they all look good so I am going with that.......!!!!!!!!!! Life is grand and I just need to be patient with this heart palp thing...it is getting better ...only slight occuances and some fleeting dizziness or lightheadedness...this is is is HOPEFUL...I am beginning to believe now

mario555 · « **Reply #266 on:** June 02, 2015, 01:45:10 pm »

Six-foot four. Happy to hear you finished the treatment. Now you are starting the real game! The one about you being rid of the disease!
As for your post treatment side effects don't worry, it will get worst (ha, ha!). I did 24 weeks of Harvoni and I am now 5 weeks post treatment. I am barely starting to feel better. In those 5 weeks I had a real shitty mood, was dizzy like hell and was still stuck with my tinnitus. The feelings were worst than during my treatment! For the last week, it has been better so don't despair!

MEG · « **Reply #267 on:** June 02, 2015, 03:21:05 pm »

Hi Mario

Thanks for writing how you're doing and glad to hear that it's getting better for you

I am also 6 weeks post and just last week began feeling inches better and this week it feels like a couple of feet....to keep the metaphor going. ;-)

I'm so grateful....I may even get on my bicycle(cycling is my main exercise/spiritual therapy) later this week for a gentle ride on the flats---it's been 8 months.

Keeping fingers crossed for you and VL saying: Undetectable...

Meg.

hepcme · « **Reply #268 on:** June 02, 2015, 05:20:06 pm »

The Flats in Cleveland Ohio

noway...ehhhh???
I love to ride too...just took a swim and layed in sun for some vit D...ahhhh life is wonderful...but 103 degrees today !! but it is dry heat

BubbaT · « **Reply #269 on:** June 04, 2015, 12:55:01 am »

Quote from: Mugwump on May 29, 2015, 01:14:01 pm

HERE HERE!!
The owner of a small janitorial firm that I have been working for for the last 2 plus years on a part time basis and for peanuts came around last night. I call him HAIRS BREATH HARRY. He manages to get into situations that stress the shit out of himself and others.
This is the gist of the phone call.
Harry;
Eric, lets have a little drink tonight can you get me a mickey of Absolute?

Eric;
Harry, I have told you in the past that I do not drink any longer and if you insist on trying to pour it down my throat our friendship and relationship is over.

Harry, after a slight pause for contemplation;
Ok can you just get me a mickey and I will just have a few so I can relax, we need to talk about next Thursday, I need your help setting up a new contract for a major building my company just acquired.

Eric;
Can do and I am glad that you are starting to get your head above water, just don't wind up drowning doing a backstroke with this one!

After the little 1 hour meeting I offered to drive him home with his company van and then walk home because he only lives a few blocks away. He refused, I have not heard from him so most likely he didn't gLet stopped or I would have had to do some janitorial work today cleaning his accounts!

So yes working on getting the stress level down in life is important but sometimes the demands of today's political economy are very hard to deal with.

Take care of yourself first and try not to forsake those who are close to you, but sometimes when you are on treatment you MUST just take control of the situation if you are going to ever have peace of mind! After Thursday and our "investigation" into the details of why a reputable janitorial firm made such a mess of an important commercial building, I will advise his as to whether or not the contract is viable on the basis of what I see, most importantly whether or not the contract is worth the effort or if the contract could become a financial fiasco for him.

Then I am going to get the hell away from telephones for a while and see if I can shake hands with Walter again or any of his his relatives. Like Fat Freddy that my brother had a conversation with before he was released. 14 lbs plus for a lake rainbow on the fly ain't nothin' to sneeze at!

Nice fish Eric!
I bet that one was fun to catch!
On a side note, my local store here in Texas had fresh sockeye for 29.00 lb.
Next day delivery from Canada, Alaska !
I'm rich, just not that rich! LOL

kittypurr222 · « **Reply #270 on:** June 06, 2015, 09:51:33 pm »

I need to know. Do docs give you a CT scan after treatment to make sure you don't have liver cancer ? Seems like they should since having hep c makes you prone to get liver cancer.
Well how would I know? I could have liver cancer right now and not know it,
This worrying is hard.

Katie · « **Reply #271 on:** June 06, 2015, 10:13:40 pm »

Quote from: kittypurr222 on June 06, 2015, 09:51:33 pm

I need to know. Do docs give you a CT scan after treatment to make sure you don't have liver cancer ? Seems like they should since having hep c makes you prone to get liver cancer.
Well how would I know? I could have liver cancer right now and not know it,
This worrying is hard.

There is a blood test for markers on the big Liver "C". If all of your bloodwork is good and if the doc didn't order the other test, I wouldn't worry about it.

Blood tests can be done to check for a substance called AFP (alpha-fetoprotein). People with liver cancer often have high AFP levels. Doctors also can compare the AFP levels before and after treatment to see how well the treatment is working.

Katie

Lynn K · « **Reply #272 on:** June 07, 2015, 12:08:25 am »

Kitty

Liver cancer is more of a concern if you have cirrhosis.

Hep c makes you more likely to get cirrhosis which in turn increases the odds of liver cancer.

I was only having annual abdominal ultrasounds before I was diagnosed with cirrhosis.

Now I have them every 6 months along with the AFP test Katie mentioned.

Even if I have beaten Hep c I will still have that testing for many years to come.

But you are fine right now so no worries OK?

suec · « **Reply #273 on:** June 07, 2015, 10:59:43 am »

Finished 12 wks Harvoni about 5 weeks ago. Having high blood pressure and heart palpitations. Lots of tinnitus, but have herniated disk in the neck, and some dizzy/fatigue, headaches and eye problems but that has been worse before. Maybe some symptoms from thyroid? Gonna have it checked w/blood work. My blood sugar levels are getting much better. Got Type 2 diabetes possibly from the HepC. Wondering if everything will eventually resolve itself if liver gets healthier w/out the virus? My Doc doesn't really say much but indicated the liver wont get better, just not worse after clearing HepC virus. I think it was a shock to the whole system after fighting HepC for decades and all will take time to feel better. I just hope the body chemistry can straighten out on its own w/out more drugs to bandaid the current side effects. Felt good on Harvoni till last few weeks. My appetite is still too good. Gained about 5lbs since started treatment. I am concerned about heart/BP issues. Any thoughts on this would be great. Also,,anyone following up on side effects symptoms from Harvoni treatment, just in case anything becomes chronic or worse with time and age. thanks

moma · « **Reply #274 on:** June 07, 2015, 02:31:37 pm »

My gasto doc. said that the harvoni treatment would take care of cirrohsis too! Because now the liver can have to regenerate. I'm sick of all the mysteries with no answers to this treatment. Ya, lots of after side effects. But I have noticed the numbness in my feet has stopped, no itching, but still a little on the sensitive side (cry-ie) brain fried most of the time. After 44 years of hepc what can I expect? Our bodies have adjusted to having this virus now it has to adjust to not having it.
Hang in there everyone-
MoMa

hepcme · « **Reply #275 on:** June 07, 2015, 03:44:15 pm »

wow strange the doctors would say the liver won't get any better , what planet did he climb out of....the liver is the only hope we have as it is the ONLY organ that CAN rejeuvenater even cirrhosis as I have heard...may take long time to rejeuvenate but enzymes would not have already came back to range if it wasn't healing already...dahhh anyway I had dizzyness, fatigue , hunger, and heart palapatations at 4 mo Post TX and now at 16 wk Post TX I am doing so so much better....I am actually seeing hope coming and getting alot of sleep
It is happening

Katie · « **Reply #276 on:** June 07, 2015, 03:56:09 pm »

hepcme: That is such GOOD news that you are improving! Wonderful as you had some scary things going on. Thanks for letting us know. Maybe my post treatment fatigue is not my new normal. I like that idea!

Katie

Katie · « **Reply #277 on:** June 07, 2015, 03:59:48 pm »

...and yes, the liver will rejuvenate however if there is heavy scarring that may be debatable, so anyone with cirrhosis should protect their liver. For that matter, all of us should since our detoxifier has been compromised in most cases for decades.

Katie

hepcme · « **Reply #278 on:** June 07, 2015, 06:14:24 pm »

agree with that....I have tried some foods only to have come back at me ...digestion is still slow and hear alot of gurrrrgling going on down there...I eat small meals with breakfast being the healthiest and most agreeable... I have not eaten meat in decades - fried foods - ice cream- mayo products , processed , fish etc the list goes on ...so I am taking it slow and enjoying a happy norm for now...still love the carbs though...big , no huge,, compulsive fettish...Oatnut breads , wheat nut muffins, crans oats nuts etc that list goes on ...YUM don't forget the chocolate too

Katie · « **Reply #279 on:** June 07, 2015, 06:35:19 pm »

Quote from: hepcme on June 07, 2015, 06:14:24 pm

agree with that....I have tried some foods only to have come back at me ...digestion is still slow and hear alot of gurrrrgling going on down there...I eat small meals with breakfast being the healthiest and most agreeable... I have not eaten meat in decades - fried foods - ice cream- mayo products , processed , fish etc the list goes on ...so I am taking it slow and enjoying a happy norm for now...still love the carbs though...big , no huge,, compulsive fettish...Oatnut breads , wheat nut muffins, crans oats nuts etc that list goes on ...YUM don't forget the chocolate too

HA! I still indulge in ice cream as that helps with my hiatal hernia as it cools it down and it's my comfort food and I beg to differ with you on fish. Fish is good for you with the wonderful omega oils. Of course living where I do I get wonderful fresh seafood which is healthy in so many ways. I figure it counters my ice cream! I eat lots of nutritious soups as I can make up a batch and freeze them so I don't have to cook all the time and I have a couple portions of fresh fruits each day add a salad and I am good to go.

We all do what we can do but be careful on OTC medications. I think they are worse than any red meat if done too often. I have a friend that proved this. She has been cured of HepC GT 2 for over a decade and is now having cirrhosis issues. She is a vegetarian and eats healthy but loves her Ibuprofen and is paying for it.

Have a good week everyone, feel better and Live in the Moment!

Katie

hepcme · « **Reply #280 on:** June 07, 2015, 06:53:20 pm »

I am just paranoid of all the waters....fukashima lol comin our way....too many dead animals on the beaches and waters turning red in countries...just sayin...too much to keep track of I just do without...I miss fish so much though Loved Tilapia and crab legs ...been so long...just want to dip in butter ..ahhh :{

Katie · « **Reply #281 on:** June 07, 2015, 07:05:21 pm »

Alaskan waters are still good so read the labels. I just had some wonderful Dungeness crab, from the ocean to the kettle and my pantry and freezer is full of shrimp,salmon and halibut. I am very fortunate. I know it is really expensive down south though.

Mugwump · « **Reply #282 on:** June 08, 2015, 01:17:01 am »

Quote from: hepcme on June 07, 2015, 06:53:20 pm

I am just paranoid of all the waters....fukashima lol comin our way....too many dead animals on the beaches and waters turning red in countries...just sayin...too much to keep track of I just do without...I miss fish so much though Loved Tilapia and crab legs ...been so long...just want to dip in butter ..ahhh :{

Just watch out for this fish which perhaps looks a bit like my liver before Harvoni treatment.

https://www.youtube.com/watch?v=xQP5yV9yxFc

I don't think we have to worry too much about Fukashima. I would be much more concerned about what is happening with the amount of plastic that is dumped into the ocean every day instead of being recycled. It is cheaper to dump it than to take to places to recycle it. We are seeing fish showing up with their stomachs full of small pieces of plastic all over the planet. Here in BC we are seeing many salmon return to the rivers with plastic in their stomach from feeding on it in the ocean.

The Japan earth quake and tidal wave was just the tip of the iceberg so to speak.

But back to the topic, Katie I think you will start to feel better soon because most likely, like me you picked up some crud flu virus like I did at about week 14 during treatment.

I am finally starting to feel good again, touch wood. And the really good news is that the constant pains in my hepatic region are gone for the first time in perhaps 5 years! When I had gas for the last 10 years the pressure created slight pains in the area just below my liver, this is now gone. The constant rumble and churn after eating food is gone. For years I have had a the stitch in my side which is like the slight pain you got after exercising hard we called them growing pains when I was young.

These things have eased up to the point where I feel better than I have in over 20 years!

HCV is a devil of a disease and we should never underestimate the damage it has done to us.

Hope we all find freedom from this curse and soon.

Eric

hepcme · « **Reply #283 on:** June 08, 2015, 09:15:41 am »

thank you for that, I too believe HCV damage has been severe and I find alot of folks out there seem to be quite in denial of it...It is wonderful if they are doing great but I guess with the complications i have had, I do attribute it to this virus or whatever it was...and find it hard to believe that anyone of us , having 35 yrs of continual depletion of nutrition to needed organs all thru our bodies , can say they are not in need of healing...my liver area hurt since 1984..I had many DR not knowing what it was..gave me Malox etc...I took vit K and helped for years...HCV affects every organ in us and the good news and crazy news is......
yest , I noticed my hair is not grey anymore !!! It used to be salt and pepper and it is mostly brown now..

go figure...I did eat potato salad at a picnic yest and paid for it dearly for hours...first mayo product in many many many years ..OMG was it delicious !!! A true chef made it...ULTIMATELY WORTH the hours in bed...LOL

WholeFoods · « **Reply #284 on:** June 08, 2015, 10:19:13 pm »

Hi, I am now just under 8 weeks post TX and still having digestion problems but maybe am able to get away with more than I have in the past, as I, like some others, am starting to test the waters. I was F2 4 years ago. Still getting occassional muscle cramps in my upper back that turns into bad migraine. Otherwise, stamina is getting better, sleeping okay. Had a bout with tinnitus, but had been listening to headphones at work, so quit that and it has helped. I agree that HCV has caused a lot of damage particularly as you approach 30+ years with it. I could tell it was really starting to tear me up and was so greatful for Harvoni to come out when it did. Sure hope things improve for us, I know they will, some of the trial folks can attest to that.

hepcme · « **Reply #285 on:** June 09, 2015, 12:31:00 am »

Ditto WF thanks for your status...we are the champions ...of the world

SIXFOOTFOUR · « **Reply #286 on:** June 12, 2015, 04:07:02 pm »

Im 2 weeks since EOT and for almost 8 days I felt bad with differnt side effects of getting off the Harvoni, in some ways worse than any Id had on the medication.

I was nauseous, fatigued, and unable to get a solid night sleep on and off for the first 8 days. All of that is gone now and Im overall feeling pretty good.

Had my EOT Dr visit last Monday and got another VL done <15 undetected same as the 8 week and 10 week.

Now Im just waiting for 12 week and 24 week!!

Katie · « **Reply #287 on:** June 25, 2015, 06:59:05 pm »

I just got my recent results and I am Hep C FREE! Totally delighted to no longer be a bio-hazard, and was one of the few who cleared AFTER being detected at EOT. I am still not feeling well and would love to have my Harvoni energy back but I am sure I will improve with time. I actually feel worse in some ways than I did prior to treatment, only very different, and many things I had for over a decade are totally gone. Good luck to all on this journey and keep the faith!

1. 16 week Post EOT UNDETECTED
2. 8 wk Post EOT VL status - Undetected
3. Treatment duration - 12 wks
4. tx naive or experienced - tx naive
5. Genotype (1a or 1b) - 1a
6. F1-F4 fibrosis status (date) - no cirrhosis
7. Initial VL (date) - 2.6 mil

All of my blood work is perfect so my energy is just around the corner...I know it!

hepcme · « **Reply #288 on:** June 25, 2015, 09:54:40 pm »

Yeaha...Katie thats what I am talking about...CONGRTULATIONS ON THE FINISHLINE I am 18 weeks post TX and I have been doing great for more thatn two weeks consistently now...I am starting to believe I am OK and can move on.....it is fantastic...I had some hard sides and alot of reaction that just seem to come and go...wave in and storm out...but some clinged on for weeks...strange...and scarey...LIFE IS GOOD

WholeFoods · « **Reply #289 on:** June 25, 2015, 10:16:15 pm »

Congrats on SVR Katie! Really great to see such encouraging news! I am starting to thing some of our existing extra-hepatitis c manifestations may remain with us for the long haul. That's my fear anyway. I have for years had bi-monthly flare ups of upper body pain and digestive problems that I keep hoping will go away if I: have gallbladder removed, treat the hep c, go to physical therapy, control my allergies, get a better bed/pillow or air cleaner. Anyway, you get the idea... The pain persists. I am almost 10 weeks post. Digestion on the upswing, energy good, concentration good, not much anxiety, sleeping good. I had constant problem with oral lichen plan us on treatment. Had a respite for a few weeks after and now it's back again and not responding to treatment. I ate a few things on the forbidden list but only because it was in remission. Those flares seem to follow the flare up of upper body pain. At any rate, I won't give up hope for awhile. And when I do, I will pursue other DX for the pain then seek an appropriate TX. Hopefully will be SVR and liver in better shape in case I need to go on an RX to control the flares.

It's definitely a process that requires a lot of patience!

moma · « **Reply #290 on:** June 25, 2015, 10:57:45 pm »

Katie congratulations! My heart is so full of joy right now. I'm waiting for the 3 month results. Had blood work done last Monday and feel like throwing up with anxiety over the "WORD" undetected! Your post gives me lots of positive thoughts....
It has been great following your journey-
MoMa

debbi · « **Reply #291 on:** June 25, 2015, 11:08:02 pm »

Hi, Yes, I'm just so happy that this miracle medicine has cured me and many of us!!! Amazing, I still think it just seemed too easy to rid this disease within a few months ,Always try to remember that each day counted is remarkable curing us. Think, of how worse we would be getting each day, but Instead The medicine, with a few side affects, and aren't emergency type, each day your healing, and healing getting rid of this poisoning disease, How lucky we are! Try, to stay brave and that You yourself can and will fight the battle and WIN!!!! I too have aches and sinus problems especially with the pollen being a double whammy on the charts? Sinusitis,rhinositis.ugh, but, have it checked out so an infection doesn't worsen., hopefully and shortly you'll be feeling sol much better and happier that you stuck it out and won ,cured, how lucky, hugs,debbi

Katie · « **Reply #292 on:** June 25, 2015, 11:14:58 pm »

Thanks everyone! Life is good and we'll all move forward. I am so grateful for this cure, and knowing my blood is no longer toxic to others, is the very best part!

I am so fortunate as I am retired, and so I can take it easy and not have obligations. My only difficulty is I am a worker. I don't sit well. My relaxing time is doing woodworking or painting or laying tile or artsy stuff. I love building rock planters and gardening, but you know...it can all wait...and I know my energy will return and I will be ready to go. Meanwhile there are lots of good books to catch up on.

I think of all of you making the journey and am sending you healing light and love and look forward to your SVR!

Katie

Cally Balmoral · « **Reply #293 on:** June 27, 2015, 01:58:17 pm »

12 weeks post tx and still undetected and tp center calls me cured and hepc free......yea! Thanks to all of you for your support and sharing. Feeling much better as I suspect many of you are too. Peace to all Cally

debbi · « **Reply #294 on:** June 29, 2015, 09:50:36 pm »

Quote from: debbi on June 25, 2015, 11:08:02 pm

Hi, Yes, I'm just so happy that this miracle medicine has cured me and many of us!!! Amazing, I still think it just seemed too easy to rid this disease within a few months ,Always try to remember that each day counted is remarkable curing us. Think, of how worse we would be getting each day, but Instead The medicine, with a few side affects, and aren't emergency type, each day your healing, and healing getting rid of this poisoning disease, How lucky we are! Try, to stay brave and that You yourself can and will fight the battle and WIN!!!! I too have aches and sinus problems especially with the pollen being a double whammy on the charts? Sinusitis,rhinositis.ugh, but, have it checked out so an infection doesn't worsen., hopefully and shortly you'll be feeling sol much better and happier that you stuck it out and won ,cured, how lucky, hugs,debbi

hepcme · « **Reply #295 on:** June 29, 2015, 10:03:22 pm »

Katie
How are you doing lately ? are you back to creating ? I am painting all my woodwork in twnhouse...then the walls , was painted when I moved in a year ago but now that I am in....I can see thin spots and heavy then streaks then plaster piled on for a nail hole...oh my drive me nuts..can't have that....so a painting I will go...doing baseboards and trim tomorrow do the french doors....I only get a few hours in as I just get so tired and I drop everything...brushes, bucket, can't find this , can't find that...my mind gets so ADD I forget what I just did...this getting old is not for sissies....I dropped the lamp and the bulb broke......my co-ordination is getting worse I notice...I tried to hit a fly on the wall ...NOT EVEN CLOSE

throw something in the trash...miss everytime....what is with that

I use to play basketball and baseball , could catch a high fly ball in outfield...LOL oh well,
I AM HEPC FREE dont' sweat the small stuff....life is good
anne

KAL · « **Reply #296 on:** June 29, 2015, 10:36:06 pm »

Quote from: debbi on June 25, 2015, 11:08:02 pm

Hi, Yes, I'm just so happy that this miracle medicine has cured me and many of us!!! Amazing, I still think it just seemed too easy to rid this disease within a few months ,Always try to remember that each day counted is remarkable curing us. Think, of how worse we would be getting each day, but Instead The medicine, with a few side affects, and aren't emergency type, each day your healing, and healing getting rid of this poisoning disease, How lucky we are! Try, to stay brave and that You yourself can and will fight the battle and WIN!!!! I too have aches and sinus problems especially with the pollen being a double whammy on the charts? Sinusitis,rhinositis.ugh, but, have it checked out so an infection doesn't worsen., hopefully and shortly you'll be feeling sol much better and happier that you stuck it out and won ,cured, how lucky, hugs,debbi

HALLELUJAH ! to these words............Congrats debbi !..for the freedom of this nasty virus , .............in my view ,the side effect's pale in comparison to the end result of this ugly virus .

debbi · « **Reply #297 on:** June 29, 2015, 10:55:05 pm »

Kal, HALLELUJAH, HALLELUJAH, is right, we are hepc FREE. Remarkable ,never thought I'd be actually saying and hearing these wonderful words Thank you Harvoni people, hugs and kisses to all. YES YES YES !!!!!

MEG · « **Reply #298 on:** June 30, 2015, 03:44:11 pm »

Katie! Can I hear a huge AMEN?!!

I'm so happy for you---------->what a warrior. It was tough going for a while waiting whether you indeed had cleared. This news is sweeter than sugar and honey and chocolate combined!

Ya, energy will take a while. Same here. But it's heading in the right direction.

PS: I keep hearing about the wildfires in Alaska and thinking of you. Please stay safe...Many hugs sharing your joy, Katie....

Mugwump · « **Reply #299 on:** July 03, 2015, 04:03:43 am »

Quote from: Katie on June 25, 2015, 06:59:05 pm

I just got my recent results and I am Hep C FREE!

1 small whole sockeye 3-4 lbs dressed
2 cups wild rice cooked mixed with a calrose nutty flavor short grain brown
4-5 minced shallots
smoked bacon bits (good quality)
smoked almonds chopped
1/2 cup fine chopped celery.saute with the shallots in a tablespoon of butter include the celery leaves!
1 teaspoon dried thyme
cracked black pepper
pinch of sea salt

Stuff the salmon with the mixture and wrap it in a good fresh sea lettuce from an estuary stream outlet, failing to find sea lettuce use good fresh kelp leaves but wash, boil and rinse them to reduce the natural salt.

Wrap it all in cooking grade cloth tied up with butcher string and steam it until the fish is firm and completely cooked.

CONGRATULATIONS KATIE!!!!

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