Hep C Discussion Forum

lamassu · Senior Member

Mavyret, trying to start treatment!!

Dandelion22 · Veteran Member

Hi Iamassu, My ER Dr explained that afib is fast and irreg heartbeats, whereas SVT is "palpitations". The beats were not irreg at all. I had never had such intense "palpitations". The ER Dr said all my labs were great and didn't want any other tests. I know what caused "the event". I was taking mega doses of VitD3, and I felt like I was a little on the edge. I could tell it wasn't right. I've been taking minimal vities since. BTW, they are prescribed to me by my Dr of 26yrs who has been able to restore my health through diet and supplement protocol. He tests me on them before prescribing. When he started me on mega doses after EOT, he said he was doing this to insure we got every little hcv viron still hiding out in my body. I knew right away it would be a challenge, and it was.

I will follow up with my cardiologist who I haven't seen in 7yrs. I was deeply grieving back then and had palpitations so was given the whole work up, and prescribed Bystolic. As Canuck says (good memory C!!), during Harvoni my BP did go up, but I never went back to see him, I just upped the mg's of Bystolic. Once off Harvoni it normalized. But it wouldn't hurt to see him again. I will. Though I know why I had the tachycardia.

I saw my guru Dr today and he says I don't test for the Bystolic anymore and recommends Metoprolol, a half of 25mg daily. I'm going to run it by the cardiologist.

And now for the real news..... DRUM ROLL Plz..... I got the news in my Dr's portal today that I'm still UND at 4wks post EOT. I've been over-the-moon stunned ever since. Ecstatic after 39yrs of sick, and 1 relapse. Now I can start to recover my life and soul!!

I'm going to give myself a few months to reach homeostasis and then run all the labs and levels again. My TSH is normal like all the labs I've recently had. I'd ask for Free T3 and T4, but think that time without the virus will return to normal my everything.

Oh, and no smoking for about 39yrs, a prescribed diet and supplement protocol based on my food and chemical sensitivities, and a good clean life. Yoga 50yrs. I think I'm in pretty good shape actually. I've managed to go to the gym throughout treatment as well.

Happy Dancin away ~~

DL

-- Edited by Dandelion22 on Tuesday 29th of May 2018 05:49:34 PM

Canuck · Guru

Hi DL and lamassu,

If you aready have your own "cardio" doc DL, lamassu is right, you should go see him and have further cardio strips (EKG's run), and/or assessements, as he sees fit, for lookie loo's, your cardio guy should be able to pull all the tests they ran on you at the ER, no idea if you have had prior hx's of this or other cardio things, but asume you have, if you already have your own cardio guy - you had mentioned prior having to go to the ER while on your first DAA treatment. You do (we all do) need to be assessed and keep an eye on these kind of things that potentially might need some intervention (at some point) - don't forget about going back to have your thyroid level functions checked out again - it's been while for that, hasn't it?, even though your thyroid levels were within normal values (a couple years ago?) - thyroid issues (if very out of wack) can affect our heart rythyms too. So, go get checked out (on all counts) and hope this was a one off that may not recurr and needs no intervention.

Hey lamassu, you know the atfib routine inside out, learned the hard way! You never mentioned you were on thinners prior! Minor atfib things happen more commonly than people may be aware of! Obviously your situation must have been one of persistant, repeat episodes which required intervention and ongoing treatment to minimize risks, many folk are lucky and it can be only a occasional event for which no intervention or ongoing treatment is required. Good you bring your perspective to this, as one should always be aware of how best to keep monitering oneself and taking care of number 1!!

Waiting for both of your good news parties soon. One more sleep for lamassu to finish, and, (maybe) just one more sleep for DL to hear her good news! biggrin C.

lamassu · Senior Member

Hi Dandelion22 glad you are feeling better. SVT or atrial fib is not to be taken lightly; you absolutely should be seen by a cardiologist. You might be having transient episodes of afib you don't notice. I hope you do not smoke; even one episode of SVT or afib puts you at higher risk of stroke and smoking makes it much worse. Depending on your "stroke risk score" you might be put on warfarin to prevent possible future stroke.

Your cardiologist may also order a carotid ultrasound and brain MRI to see if you have any evidence of prior mini stroke you did not notice. If you smoke please stop now. If the MRI shows any small ischemic areas in your brain (evidence of stroke) you definitely will be put on a blood thinner like warfarin. I have been taking it for years, no big deal but will require you to modify your diet to avoid some foods.

Episodes of SVT or afib that do not resolve require cardioversion. The process is painless. You are given propofol IV to put you to sleep and your heart is shocked with a defibrillator to convert you to normal heart rhythm and you wake up fine in 5-20 minutes with no memory of the procedure. Best wishes!

-- Edited by lamassu on Tuesday 29th of May 2018 09:58:30 AM

-- Edited by lamassu on Tuesday 29th of May 2018 10:00:57 AM

Dandelion22 · Veteran Member

Hi Canuck,

Thank you so so much for all your positive and encouraging words. I pray it IS my time!!

I'll let you know 1st thing. Let the party begin!!

Hugs,

June

Dandelion22 · Veteran Member

Hi Iamassu, I can't imagine living with SVT. It was a nightmare for me. I was lucky. My heart rhythm normalized on its own. ER all my labs were good. I was released without any instructions. In fact, I promised to follow up with my cardio doc, and haven't yet. I've been busy trying to get by every day. Getting off Mavyret was hard for me. I'm feeling better now tho after a month and will make an app't to see him. I didn't know SVT may require cardioversion and meds. I pray I don't need to go thru that again. Happy you're stabilized, that's scary stuff to go thru.

Canuck · Guru

Hey Dandy,

So glad to hear from you! Not great about going tachy tho. Otherwise, i would say it "IS" your time (not "could" be your time)!

Normal, labs, normal U/S, no VL at EOT, AND you got the powerful Mav, it's a sealed, signed and delivered, done deal.

Can't wait to hear you say you know your EOT+4week is UND! In a while, when i get a couple things done around here, i will be on the road for a few days, so if i don't post for a bit you will know why, I will check in when I can tho. I will be thinking of lamassu too with his EOT party coming up right soon! smile C.

lamassu · Senior Member

Dandelion22 did you require cardioversion or did your SVT revert to normal heart rhythm without intervention? Hope you are OK now. I have been living with paroxysmal SVT for many years now have had several cardioversions but the cardiologists finally managed to find the right combination of meds that has kept me in normal sinus rhythm for over three years now (knock on wood:)

-- Edited by lamassu on Monday 28th of May 2018 11:12:04 AM

Dandelion22 · Veteran Member

Hey Canuck and All ~ I find out this week that I'm 4wks post EOT ~ UND ~ I should know tomorrow or Wed....!!! VERY excited but cautiously so.... I ended up in ER on Moms Day with severe SVT (supra ventricular tachycardia).... no fun... but it breaks up the wait haha. If I cure this life sucking monster this time I will sprout wings of joy. After 26yrs of down for the count, 12wks Harvoni, and now 16wks Mavyret it just could be my time.....praying.

Best to all,
June

PS.... recent labs and abdom ultrasound all pristine perfect

-- Edited by Dandelion22 on Monday 28th of May 2018 09:15:45 AM

Tig · Admin

I guess no news is good news? Fingers crossed!

Tig · Admin

Canuck · Guru

Hey YAY DL,

By all counts you should be done! I think we should be celebrating your EOT?

Hope you woke this AM knowing there were no more pills to take. Freedom.

That is ... unless ... I got your dates wrong, or, if you lost a pill. Hope you weren't like one gal here who had to do a re-calculation cause she dropped one in the toilet, or another who highly suspected she had dumped some of her pills down a heat floor register, (riba) - I would have wanted to ignore the ones that had possibly landed in the floor register too!

No matter if today is the day, your freedom is near! Hope it feels good. biggrin C.

Canuck · Guru

DL, biggrin

Image result for 1 more sleeps

Canuck · Guru

Hee hee DL,

Image result for 2 more sleeps

Canuck · Guru

Hey DL,

wink

Related image

Tig · Admin

Wow, that went fast!

Canuck · Guru

Hey Dandelion!

Um ... it seems to me ... this memo is in order! biggrin

Image result for 4 more sleeps images

angelseven · Senior Member

BTW, so far all the relapsers on our hep Relapser group on facebook have cleared the virus with vosevi.... thats about 3 maybe so far!! Some have had 2-3 prior treatments

angelseven · Senior Member

I may do a viral load at EOT + 4 weeks but i havent really made up my mind yet!!!! LOL

thanks for checking in on me!!! It is interesting to see what is going on with these other people taking mavyret on the mavyret facebook site... Geeze a lot of strange, silly things!! Nothing detrimental

I am feeling better now with 6 weeks to go...

hugs, connie

Canuck · Guru

Hey angel,

Thanks for checking in - I was quoting you over in Mav.1 and Mav.2 - I liked your comment ... "everything's good"! wink

It's up to you of course, but generally, the docs almost always DO do an EOT VL and bloods, (so that would be at or just before your last end day of your 16 weeks), and the other "standard" the docs usually do IS (aside from the EOT VL at 16 weeks) would be your EOT+12 week VL and bloods, (so if your EOT is May 12 then your SVR12 date would be far off at Aug 8).

If it were me, I would be wanting to know asap ALL my good news, at EOT AND my SVR12, AND, if i had been through what you had been through, I would even be wanting to know my "in between" good news - like an EOT+4 week VL! But ... that's just me. I could never wait until Aug!

You would be doing a LOT of celebrating that way, and so would we! wink C.

angelseven · Senior Member

Hey there, I have 6 1/2 weeks let of meds... EOT May 12, two days after my birthday!! All my blood tests have been perfect so i really havent had much to report but i should have checked in!!!

I would just recommend people to take mavyret with dinner.... Some nights it really knocks me out a few hours after i take it, that would be trouble during the day!!! I still get a rash on my forearms when i work out hard but it goes right away..... they are some other facebook peeps have troubles with rashes but not a lot honestly.

Everything is good!!

peace, connie/angelseven

Canuck · Guru

Hey angel,

How is it all going?? You must be coming up on your 12th week (soon?) - have you had any more appointments or blood tests (or reports on how you are feeling/doing)? Soon there will only be a few more weeks to complete to get to your 16 week EOT! Hope all is going good! smile C.

angelseven · Senior Member

Thanks Tig!!

Tig · Admin

Hi Sweety,

You failed to follow my request and reposted advertisements for generic drug sales on the open forum. You claimed to be a Virginia pharmacist, but your IP address traces back to India. Rules are rules and there won’t be another opportunity to advertise medication to our members. It is NOT allowed! Good luck in your endeavors, just not here...

sweetyeliza · Newbie

thank you so much for the sharing Tig it was very useful and informative

-- Edited by Tig on Wednesday 14th of March 2018 08:53:25 AM

Tig · Admin

Good to hear the great report, Connie! Congrats on the Und at week 6. I knew you’d achieve that milestone, it’s rare to get through these awesome treatments without doing it. I have to admit that nobody is positive until it happens to them. You’ll never have to look back, I’m sure of it!

A lot of people have mentioned these new DAA’s help them sleep. I’m like you, normally get 4-6 fair hours of sleep now, but even on the old drugs I slept pretty well. I hope you’re able to enjoy it while it lasts. It feels good to get that kind of rest and it’s important right now. Take advantage of it!

Thanks for the information. I look forward to reviewing it.

angelseven · Senior Member

Here is an article about the treatment i am on!! Thanks to dandelion who located it!!

https://fixhepc.com/blog/item/104-perfectovir-abbvie-glecaprevir-pibrentasvir-maviret-sofosbuvir-shines.html#

Wow, i have been having nights when i sleep 9 hours, this is highly unusual for me. My normal sleep time is about 4-6 hours a night, obvioisly it is the mavyret/sof that i take at 6:00. It usually knocks me out by 7:45 or 8:00, then i sleep and maybe wake up for a little while but many nights and am to tired to wake up again...

I dont think i posted that my viral load was undetected at 6 weeks, that was a relief!!!

Starting my 8th week now, boy has time flown!!

hugs, connie

Dandelion22 · Veteran Member

Thank you for your compassion and wise thoughts Canuck. Yes, I come to treatment with a full plate of conditions already, but I was much better off before taking Mavyret, so am looking fwd to finishing up.

I've been sick 26yrs. I like to believe I'm getting another shot at life. My grandson's games, my river down the street, a new picnic table and maybe even a new friend or two await me.

Thanks for the reminder. I do need to check in with my endocrinologist, and request a good battery of tests. I've been tracking the fickle thyroid effect for decades. It'll be interesting to see how its function improves without the virus holding it down.

Thank you for the cheers as I round the corner to the finish line - in 6wks biggrin

Wishing you happy and productive stealth time ahead. Thank you again for your support.

Dandy

Canuck · Guru

DL,

We can read on this site, many here who (luckily) have NOT had terribly weird or unpleasant things/experiences happen to them (to speak of much) while on treatment on these new DAA's, it's all "in the body of the beholder" I guess. The new drugs for many are certainly not as hard as the old ones were. Those old drugs had some guaranteed and near-guaranteed nasty troubles that "came with". But everyone is dif, and will be dif (and perhaps) it can also depend on where one "was at" prior to arriving to treatment (I think). Even on the new "DAA-lights" people can experience what they feel is bad, others didn't even feel they were on anything! Go figure! Suffering is all relative isn't it - RC and I used to muse about being able to jump inside the body of a "normal" person, maybe just for a bit, so we could try to gauge what "normal" was! You have struggled with unwelllnes and many conditions for a long time, I SO SO look forward to your recovery period from HCV, coming up soon!, after a couple more UND's under your belt, and you realize and your body realizes you have been unbound from the extenuating and deleterious effects the HCV havoc has contributed to your systems and health.

Among other things, I arrived to treatment with profound fatigue and fog - it increased while on treatment and improved quite slowly after.

(In my book) I do not find it hard at all to understand your experiences while on treatment are not easy, you "came with"/pre-loaded with stuff/conditions that at the best of times would be hard to manage.

Weather, that's a known thing, which has the ability to exacerbate/cause things - I am sure many of us have heard testimonials from folk who have to pack internal metal hardware, or folk with some types of arthiritc conditions, migraines, etc. My partner (though not so frequently affected now) suffers with migraines which can and have been brought on by all sorts of stimuli - such as weather, even just seasonal snow/water reflective light!

I am just glad the overall experience (this time), has not been quite what you experienced with your first treatment - and comparatively, I am most certainly, firmly, convinced that this time your outcome is going to be STUPENDOUS! One less BIG (HUGE) thing! Then ... we will wait for the good domino effect.

You have a lot on your plate right now, but it's been niggling me, I would encourage you to go back (only when you can) for further "regular" following/blood testing for your thryoid, you seemed to have stopped (2 years ago?), I think you said after your thyroid levels all appeared to be functioning in normal amounts for quite some time? Just like the important SVR following we should do, after our HCV cures, so should we follow things that were abnormal in the past. Thyroids can be fickle, got to keep a routine eye on them once in a while.

Jes talkin and thinking out loud, as I will have to be going stealth soon - sabbatical, to do war with a million pieces of paper and my accountant! Wish me luck.

Hoping your next weeks to EOT, go fast and easier. smile C.

Dandelion22 · Veteran Member

Thank you for your words of encouragement Tig. I really look forward to having a brain that works .. again? biggrin

Thank you too Canuck for your kind and wise support. The weather really seems to slay me. I'm more hyper-sensitive to weather changes on the Mavyret. I'm that way naturally - from the fibromyalgia, hashimoto's etc. A storm 3 days ago nearly killed me with cardiac, migraine, nausea, hot/cold, and all kinds of xtreme pain. Very strange as I haven't been that sick in about a decade. Anyway, better today. Weather!

Best to all,

Dandy

Canuck · Guru

Hey DL!

From 6.5 mil to UND at 4 weeks and UND at 8 weeks, there's no looking back now. That's your "half-way home" UND! You gotter made!

Ignore looking for such tiny downward blips in your ALT (in your case) being that they were within norm's pre-treatment and then remained within norms during. You would never know if a tiny downward blip was just a variation or a sign of less inflammtion. Just be glad you started off with normal ALT/AST's and other normal bloodworks! A very good place to start from, and stay. Now ... had your ALT increased 10-fold while on treatment, well then, you could fret, but this has no chance of occurring with you - cause you gotter beat. Yer on a roll.

Sorry for the ongoing trials. I too was troubled with fatigue/fog through treatment. But I'm glad you get some good days - like today, with this confirmation of your VERY good news. Finally, you are being freed of this virus forever.

You are right, you CAN do this (you are).

Yup, at 10 weeks you'll be doing the count-down now, to EOT. It will feel weirdly long and short i am betting.

Happy 8 week UND! biggrin C.

Image result for half way home sign

Tig · Admin

Hey Dandy,

BIG WOOT!!

That‘s a stellar report, congratulations. In my humble opinion, you will never see another positive viral load again. Of course that requires finishing and assuring proper tissue exposure and destruction of all the hidden beasties. These treatments work and that’s a fabulous thing!

I‘m glad you’re not laid up this time. Having a little more energy is a plus, too. Some people have varying degrees of brain fog during treatment. Hang in there and know that your mind will return to normal after this is old news. Takes a little while, but it gets better. Now I don’t have a reason to give my family for my forgetfulness. I’m trying to keep them away from any ideas that might indicate an age related thing, lol! So, enjoy the option while you can.

Keep us informed and check in again soon!

Dandelion22 · Veteran Member

Aha! I just remembered my dear active board!!

I've been very spacey and forgetful. I just got back 8 wk VL and it's UND again. I'm feeling pretty positive though have to say it aint ez. Occasional headaches, fatigue, severe fibro flareups with weather changes, and forgetfulness the main problems. The good news is that I'm not bedridden as I was on Harvoni. And, I actually have more energy some days and am even rocking the gym! I can do this.

Thank you everyone for your kind responses of encouragement and support.

Canuck, my preTX VL was 6.5mil. All my labs are within normal range (LFT's, CBC w/ diff, Metabolic panel). I'm a little surprised tho that my LFT's aren't lower. They are w/in normal range, but not in teens or twenties as I'm hoping. I'm staying hydrated, taking Mavyret same time every day with a hi fat meal, and saying my prayers.

You're very observant, I did start Mavyret on same day as Harvoni 3yrs prior. Crazy! It realy just turned out that way, but I could've waited a day to break the spell...but instead I wanted to stand up for that special day, and take it on again. Ha! YES! Poetic justice!

Onward thru the fog! I'm almost at week 10 and can start the countdown to 16. Thank you for cheering me on!

Blessed Be,
Dandy

-- Edited by Dandelion22 on Friday 2nd of March 2018 11:28:47 AM

angelseven · Senior Member

Yes, pre-treatment viral load was around 4 million. Thank you for making me feel better... now my worry is my blood pressure which is averaging about 160/85 at home.... not good, my cardiologist said anything over 140 on top number could be a problem (this was in 2015) then i was averaging about 125/80... he doesnt worry about the bottom number. So obviously this is being caused by the medication. I do have some white coat but at home it has always been below 140 for top number. I have to call his office Monday... he is basically not into meds unless absolutely necessary. I am in good health and work out a lot....other people on mavyret have had this problem... well immediately i will stop salt and no more pickles. If my past doctor takes my insurance i will go see him.... i really dont want medication but i dont want to stroke out either!!! I have been on the meds 5 weeks, gotta long way to go !!

thanks immensely for your positive input!!!

angel/connie biggrin

Canuck · Guru

Good report Angel! Only 18 measly varmits left to go at 4 weeks!, pphhht, hands down, you gotter beat, it's over, even with one hand tied behind your back, your 16 week treatment is gunna be "over-kill"!

Dun worry .... just keep resting and feeding yourself good and drinking lots, as much as you can.

Your LFT's are great. You are right on target. You are annihilating it.

Just remember, NOT everyone goes UND early (as ridiculously close as you are! to being UND!) and yet they are perfectly cured. What you have done by week 4 though (like so many of us have done on these ever-more potent new DAA's ) is that you have "crashed" (mightly and very meaningfully). Crashing (just like you have already done) is exactly what we want to see! Remember ... In some of our "old" Mav trial people - Skimily did 8 weeks treatment and did not get her UND until the halfway point, NRA4ever on 12 weeks slowly dropped his VL too, freesoul on 8 weeks treatment was dropping but still detected halfway through. Regardless, they were all successful. We all become UND in our own time. Technically I was not UND until halfway through my treatment, RLS too got his UND halfway through. You have already decimated your VL to smitherines. Don't worry, it's working!

Now, about this "3888 million number" you wrote ... uh, are you sure about that?? I think you must mean your pre-treatment VL was ... __?__ how much?

I'm sure liking your teeny tiny 18 VL now, as well as that healthy skinny ALT 15 and AST 21!! You look great. Yer doing it! biggrin C.

-- Edited by Canuck on Saturday 24th of February 2018 04:36:43 PM

angelseven · Senior Member

Thank you Tig, actually I only had about one gulp, not much of the oj before the lab test....I only drink fresh squeezed and I think that is why I have not been sick in two years..

I will be hanging in there, my alt, ast is much lower than it was after 4 weeks of harvoni... I must say

Peace, angel

Tig · Admin

Hi Angel,

I was hoping that you would receive your first undetected result at week 4, darn it! Not to worry though, it’s not uncommon. These DAA’s do their work over the entire time frame. Some don’t get their first ZERO until they are through. The way it looks though, you were only a short distance away. Just keep doing what you’re doing, it’s surely working from the look of those numbers! Your LFT’s are splendid and that’s a sign of improvements galore.

Note to Angel: No OJ before your AM glucose test wink

Keep hydrating and if you’re working out, hydrate more. Keep up the good work, you’ll be done with this before you know it. I’m going to get out the dancing shoes and put a coat of polish on them just for you. We’re gonna dance when you get that first undetected!

angelseven · Senior Member

Well, I just read my 4 week 3 day lab work:

Initial viral load of 3888 million

HCV RNA, QUANTITATIVE REAL TIME PCR

HCV RNA, QUANTITATIVE REAL TIME PCR Reference Range: NOT DETECTED IU/mL this is high at 18

HCV RNA, QUANTITATIVE REAL TIME PCR Reference Range: NOT DETECTED Log IU/mL this is high at 1.26

AT two weeks and a few day I was detected at 40

My alt was 15 and ast is 21 (better results than harvoni!) All other blood work completely normal including glucose which can run high and it was normal even though I had OJ before blood tests

so, now I am hearing you are slower to clear the virus with mavyret..... I have to see the doctor next Friday and I am going to ask him for one more blood test at 6 weeks so I don't drive myself crazy.

I am feeling pretty foggy headed and it gets worse during the end of day and I have to do a lot of financial stuff and scheduling activities so I hope I don't make a big mistake....and tiredness especially late day

I had to skip yoga today to rest... and I am trying not to play league tennis as much as possible

also a little irritable at times, no nausea and slight headaches but nothing serious like harvoni

Hang in there, angel

Canuck · Guru

Hey Angel,

How's it going with all things "Mav-ish"?

With your SOT Jan 20, does that mean you have had a 4 week blood draw/VL/LFT's done??

I know you had an early one, at about 2 weeks, VL 40?

But your next bloods/VL was to be at 4 weeks, wasn't it? Let us know. biggrin C.

Canuck · Guru

Hey DL,

So, you've had a couple more weeks of the magic Mav under your belt (since your 4 week UND! biggrin ), so how are you feeling?? OK?, middling?, no surprises?

Hey, I think I just noticed sumpin! ... your start date for the Mav was (Jan 2, 2018) ... that's the exact same SOT date of your Harvoni? (in 2015)! A weird coincidental anniversary, or, could you have planned it so! Either way, I like it, as this time you got the potent drug which will cure you. There is poetic justice in this world. smile C.

angelseven · Senior Member

Way to go Dandelion!!! This is such good news.... you are going to kick the virus in the butt this time around!!!

Canuck · Guru

Per-fect DL! SO glad you got an early UND, and all other labs boringly normal. You said pre-treatment LFT's were only only mildly elevated, what were they then, and what are they now? Tell me again how much your pre-treatment VL was?

It's a very good happy day today! You "knew" it was working, you could "feel" it working, now we all know it too. Passing these mileposts have curious ways of making us feel ... sort of lighter, one less "layer", if you know what I mean, can you feel that too? You're on your way!

Hugs back. biggrin C.

Tig · Admin

Congrats, Dandy!! These are such powerful treatments, it amazes me how fast they start working. Even the blood work has normalized, that indicates healing has begun. That’s what it’s all about! Keep up the battle and be sure to continue good hydration!

Lindsmatt52 · Senior Member

Wonderful news DL!! Congrats on the UND! The best is yet to come!

Dandelion22 · Veteran Member

Dear Pea in a Pod,

Labs back and I'm UND!! The comprehensive Metabolic Panel and CBC with Diff all normal too. Miracles do come true sometimes.

I really think most of my complaints will subside once I clear and finish meds and can start building myself up again. I think the D3 and K2 and Magnesium Threonate go a long way to help my endurance. Without the prescribed diet and supp protocol I wouldn't be here. No exaggeration. I follow a strict diet based on my individual sensitivities. It works. Years ago I was taking Levsin, without knowing it was a barb, for acute abdom pain. I finally got a lactose intol test and my health did a U turn on the spot. It's so easy to heal when you know what your body does and doesn't need.

I wonder after all the tests and consults if my Dr's really had a clue about the thyroid, besides removing one I mean.

Most of us would test pos for many latent viruses I think. It makes sense you could've had mono as a kid and young adult go unnoticed. It's impossible to tell what symptom is caused by what problem, esp as doctor's know so little about virus's, and they're hard to diagnose.

You're right, thyroid meds, antidepressants, etc et al....and it's prob all caused by the damn hep all along!!

I studied bodywork for many years and have had many years of great bodywork that has helped alot, accupuncture too. It became too costly and I could never seem to replace my miracle bodyworker after she retired. Cest la vie!

My day has come.

Hugs ~

DL

Canuck · Guru

Hey hey!

Yay, blood letting day! smile

That's what I meant ... thyroxine ... ie (as in "levo"-thryroxine or synthroid) or similarly to your Armour one. Was just trying to clarify if you/they were, over the long term, trying to provide the missing (when missing) T3/4 (s).

Interesting that you are on nothing now and holding your own levels. Over time I hear the downward trend tends to re-inforce itself. Eventually the sputtering (on again off again) in fits and starts quits, the longer the situ goes on, over time, the story often goes that you are just left with no adequate thyroxine production of your own, thus the permanent supplemental thryoxine or other T3/T4 spurring sup becomes the new reality.

Was just trying to figure if the symptoms sometimes commonly associated with malfunctioning (low) thyroid hormone could be a big part of your fatigue/energy/exhaustion feelings, hard to tease out what conditions contribute the most to this. Wouldn't it be nice to have easy, non-intertwined, non-multi-system answers to things sometimes!

It should be a little easier to suss some things once HCV is out of the picture forever.

You are right, I have read about associations between HCV and thyroid, some vague. We can only hope things will improve, in many ways for you, once your are HCV-free!

You and your docs must be doing something right, as you have not suffered unduly(?) from being spleenless (just on theoretical principal) of then being at higher risk (than others who do have the benefit of owning a spleen) as far as immunity/infections.

One of my near-miss non-productive visits to a GP (in recent decades), one who did bother to have a look at my blood sugars, had a look at my thyroid function in response to my ongoing fatigue-type complaint issues, actually checked me for mono! I guess he was looking forward to finding thyroid dysfunction for an explanation, as he got all hopeful and excited with the first round of testing - and I think was disappointed in his sought-for diagnostic theory in the end, as all petered out on further testing. We found an EBV titer tho - unbeknownst to me that sometime in my youth/earlier years I had probably indeed had encountered some form of a bout of mono. I had been sick (a lot) as child and young adult, had virtually no health care to speak of as a child/young person - so, wouldn't be surprised if I had been walking around with mono! If only they had thought HCV, instead of settling on my evidence of early menopause, they kept offering me anti-depressants! Cripes, ya think I or somebody would have been able to accidentally trip over the HCV, staring out at us, from the 70's, before that nice young doc-in-training finally accidentally tripped over me and it in 2015!!

I feel a kinship with you, my pea in a pod - we don't want to being walking inigmas, we want to be well-er! Keep imagining - dreams DO come true.

Epsom baths, etc.? ... do you/have you partaken of (tried) other modes of physical/body/hands-on therapys for pain?? - heat/steam/hot tubbing, infr-red, massage, reflexology, pressure point, accupuncture?? C.

Dandelion22 · Veteran Member

Thank you for noticing C! I'm a walking miracle in many ways. I find me scientifically interesting too and have had me under my internal microscope all this time. Very interesting.

As I sit here with tinitus sizzling in my ears I'll try and answer your query's.

Thank you for all the good imagery. There's no doubt these bugs are decimated. It's just something I feel.

Thyroid... I was on Armour Thyroid for years and then Synthroid for years. My labs were never off too much, free T3 and 4 within range etc. It's been decades, though I haven't been on anything the last decade or so. I was taking Iodoral, ( iodine and potassium combo), about 5 yrs ago for a few years. I see my thyroid function intimately involved with the hep, and once again can easily imagine many of these issues resolved with an SVR.

Incidentally, I've been under the care of a doctor, 26yrs), who tests and prescribes diet and supplements that work to drive down the oncogenes and upregulate the good ones. He worked under Linus Pauling, a two time Nobel Prize winner. Anyway he's been spot-on for 26yrs now. I'm blessed for sure. Though even his serious magic hasn't cured the hep. It has however strengthened my immune system, saving my life. I hope to do more than live at this plateau though. I have big dreams.

No thyroxine, just Hashi's diagnosis... which is hypo and hyper as you know. I was hypo for decades, and about 15yrs ago - I don't remember much tho did have an iodine re-uptake test? No goiter, or any other physical signs, besides exhaustion that is. So thyroid issues about 35yrs.

I never knew I had CMV or EBV. So strange to hear of the titers. I'd been so sick so long I stopped trying to keep up with all the disparate parts. But then doctors can easily miss what's staring right at them.

I thank you for your interest. I love answering questions!

Got the blood drawn this am.

You're a kind and caring person Canuck !!!!

Thank you!

DL

I love all you heart C. Thanks so much for caring.

Canuck · Guru

My goodness DL, what a lot of interesting things you have (I am sorry to put it like that, but it is true, your personal health info/hx is riveting to me), and of course in how well you have coped with all that has been thrown at you/on you, I am just so interested in all things health (and the dysfunctions which challenge us).

You've certainly had a very unfair share. But, there will be one less thing now ... as we speak, this virus is being decimated, and pretty soon you will be getting an UND (if not already). Always, that is the best state to be in - HCV-less! It will happen, it IS happening. No que sera sera or quelling numbness required to get through this, go ahead, be worried, frightened, excited, hopeful, relieved, brave, grateful, angry, and solaced in the downright torturing and murdering you are doing to this vile virus - you have to to do the whole gambit (again) of how it feels, on your own time table. There is no right way to do this, just is.

I know how much you want this - this IS one of your things that you CAN and WILL get rid of. I hope you get a nice (early) reward for your next bloods and get to see a substantial VL decline, I am betting you will, but do not fret, you got 16 weeks of ammo! This will be overkill!

So, I am always interested in all things thyroid! The variations in your thyroxine production (and/or back and forth surges between normalcy and "down", (or lack of) "hypo" was only showing for a while?, years ago, (many years ago)? As thyroid dysfunction/function can exhibit itself in sputtering/on again off again/backfiring ways, I am wondering what lab hormone fluctuations you were seeing at first and over time. VERY NICE your levels are normal now, for the last 2 years you said?! Did they ever put you on thyroxine, or suggest it, push you to take thyroxine? Did you ever exhibit any of the other signs, goiter, eyes, skin/hair signs etc.? Had your thyroxine levels still been too low (now), that would have been perhaps one easy contributing factor to your profoundly low energy periods. But you have enough insulting maladies to easliy account for fatigue with having to have a too low thyroid function now!

Interesting too the EBV/CMV titres back then. Did you ever get it figured out, "knew" (by having/experiencing a known physically recognizable bout of mono) prior to the titers or during the titers, did you already own the viruses/antibodies? Or did everyone assume you had perhaps a prior basically-silent bout hx, or, perhaps were simply gifted with antigens/antibodies by blood products? Or, perhaps one of those weird hard to understand auto-immune titre things that can happen. I would be all ears should you feel inclined to expound. I am well known to ask too many questions - just ask anybody round here! You might be wise to ignore me, hush me up, as I could easily just exhaust you more!

Glad to hear the night dose can/does work, clonic-wise. Also glad you do not have a giant house to clean!

I am sooo looking forward to you getting this blood draw under your belt this week! smile C.

Dandelion22 · Veteran Member

Hi Lindsay ~

Thank you so much for your kind words. It's a wonderful feeling to be understood. I get so tired of pretending to feel OK in order to live in my world.

It's a joy not to have to pretend - and feel understood and cared about even.

Thank you too for the healing wishes. I pray this is it too.

June

Lindsmatt52 · Senior Member

Hi Dandelion-

I have been reading your posts and just want to say I am awed by your strength and courage. I am so glad that Angel introduced you to this board and I know you will find so much support and compassion here, as I'm sure you already have.

Best of luck to you and I hope and pray the Mavyret will finally bring you the pain-free peace that you and your body deserve!

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