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Author Topic: Still cant find whats wrong with me. Chasing a Dragon...  (Read 14998 times)

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Offline lawrosa

  • Member
  • Posts: 31
Still cant find whats wrong with me. Chasing a Dragon...
« on: July 28, 2017, 01:55:50 pm »
So I am post Harvoni June 3rd..  I still have this horrible ringing in the ears and insomnia.

Went to see general doctor again and he took a whole new round of blood tests. LOL everything came back normal but my cholestoral went up from 180 in  the may blood test to 220 in this recent blood test.

I dont know why and I only read a little on the subject. I read that the liver produces cholestoral and now that its working better this may be the reason?

Dont make sense.

I dont eat meat and am in good shape and heathy active plumber. I dont drink anymore since christmas... etc etc..

So for the ringing in ears he suggested I see a ENT ( Ear nose throat) doctor. I go on the 8th but not sure if this will find anything.

Also to note I have never had high blood pressure. Even since before Harvoni when I first started not feeling well my blood pressure was elevated.

So at the doctor office the other day getting the scripts for the blood work I started at 144/100. Wow. He took my blood pressure 7 times while I was there. All higher then normal..

This has something to do with something I have but I cant figure it out.

I even went home and started taking baby aspiren. ( I dont know if this is a good idea or not.) He told me to test at a blood pressure station in the food stors until I see him again in aug. Im around 114/86.

Ill keep testing my blood pressure but would like to know why I feel like crap.


1. insomnia
2. High cholesterol
3. ringing in ears
4. sense or worry and depression. Feeling useless. Not wanting to talk to anyone. Not feeling like doing anything really.

Thats all I have for now. Just wanted to type this to try to get some feedback..
MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #1 on: July 28, 2017, 08:34:42 pm »
Mike, I'm sorry you are having such a rough time. Here's what I know about the concerns you raise.

When a liver is under siege from hep C, it's not uncommon for it to produce less cholesterol, so the fact that cholesterol may be rising with age is sort of hidden by the hepatitis. Once the hep C is cured and the liver is healthier, lo and behold, the cholesterol numbers rise to where they would be for someone of that age and genetic background. By a certain age, a lot of people aren't genetically lucky enough to keep cholesterol within bounds without a medicine.

The same thing with blood pressure: it typically rises with age and, depending on one's genes, may require medicine. I lost the genetic lottery on blood pressure and reached the age of too-high BP before I took Harvoni, so I can't blame the Harvoni.

Tinnitus, on the other hand, may have a Harvoni connection. Before I started tx, I read a Harvoni side effects thread here in which a handful of people reported having tinnitus during and/or after tx. Tinnitus is truly a curse. Some tinnitus is treated with an antidepressant (see http://www.webmd.com/a-to-z-guides/understanding-tinnitus-treatment#1), so let the ENT know that you are feeling depressed.

Are you still doing your regular amount of plumbing work despite feeling worried, depressed, and useless? If not, getting help with the depression and insomnia is most important (and the best way to break out of this unhappy state). Even if you are working regular hours, the insomnia is making everything else worse, so the sooner a solution can be found for that, the better.

Crossing my fingers you get good medical help. You deserve to feel better.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline I fightis thetitis

  • Member
  • Posts: 126
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #2 on: July 29, 2017, 07:34:44 am »
Hey Mike,

Sorry to hear you are having some struggles.
Well, regarding tinitis (ringing in ear) and insomnia those were two hallmarks during my treatment.
For some of us Harvoni, or DAA's can affect the nerves, hence those symptoms along with joint pain can be common.
I'll take the trade off.
My good news is both symptoms have mellowed out and I hope the same will happen for you.
I recently began to have heart palpitations or "PVC's." I read that Pres Clinton had them and they improved when he went vegan. (and had bypass)
So I went Vegan last week. Hard to do..see how long I can hold out on Pizza, Salmon or scrambled eggs.
So far I have ALOT more energy and an overall better sense of well being.

Will see if that continues.
I know some of us are searching for a magic bullet from these wacky symptoms or at least some health improvement. For most of us, our symptoms "feel" to have a direct connection to the DAA's.
The challenge is we are aging too.. so any new symptoms remain suspicious.

Keep up the good fight and let us know how you are doing.

Greg
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline northfork

  • Member
  • Posts: 55
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #3 on: July 29, 2017, 12:48:35 pm »
I used to have PVCs. They gave me a stress echocardiograph that was so bad they stopped the test. Started wearing a holter monitor. They were talking ablation, but I started taking magnesium and that worked like a miracle. Exercise helps also.
Probably infected 1969. Diagnosed 2006. Genotype 1b.
Daclatasvir/ Asunaprevir 2013:relapse
Harvoni 24 weeks 2015:relapse
sofosbuvir, velpatisvir, voxillaprevir  trial started on drug 7/16. Viral load 890,000 approx. F2. Undetected after week 1.
12 week SVR achieved Jan 2017.
SVR 24 achieved April 2017 !

60 weeks post treatment...UNDETECTED!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #4 on: July 29, 2017, 01:47:33 pm »
About magnesium: now that nuts have been "rehabilitated" and are considered very good for us, its nice that they're also high in magnesium, as are seeds, some beans (black, kidney,...), oat groats, etc. Who knows, maybe I've been able to avoid PVCs because all those things are foods that I love to eat in their healthiest (plainest) forms.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline lawrosa

  • Member
  • Posts: 31
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #5 on: September 13, 2017, 12:44:03 am »
Im still alive... LOL.. Feeling foggy headed and fatigued these days. Trying to find a job with 6 weeks unemployment left..

Still have insomnia even though I want to lay down during the day.

But the brain fog coming back is new and only past couple days.

I can sleep after 3 or 4 am and its a 10 hour nap from there. I get up 12 or 1 pm.. Crazy as I usually am an early bird with lots of energy..

Now I feel like doing nothing.  Still have ringing in ears. Pimples back of neck, face, chest, sides of temples. ( Still dont know what the pimple thing is)

How can I possible work and keep my home and support my family feeling like this?

I let my insurance laspe as I didnt pay this month $900 cobra. I have done all I could with the doctors.

Went to ENT and found nothing. High frequency ringing but my hearing is good.

Went to general 3 times before insurance ran out. All blood work normal. He cant treat me if he dont know whats wrong as nothing shows up.

Went to dermatologist and he gave me cream to put on pimples. Not educated enough to put a coloration of pimples and what body organ/gland may not be working.

So here I am foggy head, tired but cant sleep, ringing in ears, strange pimples, and the occasional bloody nose. Same side all the time...

Do I apply for disability? On what grounds? Harvoni side effects?

Food stamps/ welfare when my unemployment runs out?

Sell the house? Where do I go? What do I do with all my stuff?

I have no savings..

Arrrg what to do...



MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline northfork

  • Member
  • Posts: 55
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #6 on: September 13, 2017, 09:27:02 am »
Mike, I have tinnitus also and I took Harvoni for 24 weeks. Now, if as you say, your medical tests are clear but you are having no luck with your doctor, you could try a naturopath or holistic doctor. That is what I would do.I use frankincense to calm down the tinnitus and that helps. A drop or 2 rubbed in front of the ear is what I do. Get your blood pressure under control.  Best of luck to you.
Probably infected 1969. Diagnosed 2006. Genotype 1b.
Daclatasvir/ Asunaprevir 2013:relapse
Harvoni 24 weeks 2015:relapse
sofosbuvir, velpatisvir, voxillaprevir  trial started on drug 7/16. Viral load 890,000 approx. F2. Undetected after week 1.
12 week SVR achieved Jan 2017.
SVR 24 achieved April 2017 !

60 weeks post treatment...UNDETECTED!

Offline lporterrn

  • Member
  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #7 on: September 13, 2017, 01:46:27 pm »
Dear Mike,
It all sounds distressing. Let's see if we can unwrap this together and come up with some ideas of how to help.

When we aren't well, we get anxious and stressed. This is normal. But if it goes on too long, our bodies do things that make it worse. This is worth looking at. In your case, so many of your issues could be caused by or worsened by stress. Insomnia is the big flag, and it is the most common cause of brain fog. Pimples can be stress-related.

As a long time insomniac, I found that I could not will myself to sleep. I needed help, and years of developing good sleep habits eventually paid off. Here's a resource: https://sleepfoundation.org/sleep-tools-tips/healthy-sleep-tips

Cholesterol - Gnatty is right - many of us thought we had normal cholesterol, got cured of hep C, and now have high cholesterol. Yours is a tad high, but not dangerously high.

Aspirin - Unless a doc prescribed it, this is NOT a good thing for many reasons, not least of which it tends to make the tinnitus worse.

Tinnitus - It sucks. It's common - about 1 in 5 adults have it. Mine is really bad (complicated by another medical condition) and all I can say is that I had to learn to love it since I'm stuck with it. I tell myself it is my own private symphony. Fighting it made me crazy; accepting it makes it tolerable. Insufficient sleep makes it worse.

Insurance - see if you can get ACA (Obamacare) - I pay $23 per month. I have a high deductible, but my doc appointments are affordable and it pays for a free annual physical.

Stress-reactivity is hard to recover from. My best tools came to me through the 12-step recovery program I'm in. I use those tools constantly. I also mediate and exercise daily. When I can't sleep, I listen to music or podcasts. I avoid the news, and try to find things that give me pleasure.

Sorry you are going through this - it's rough.
Lucinda
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline I fightis thetitis

  • Member
  • Posts: 126
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #8 on: September 13, 2017, 03:28:05 pm »
Lucinda,

That is some great advice for anyone and you got me fired up. You are awesome!!

Mike you can turn this around.
My tinnitus is awful. During treatment was REALLY bad. I had two notes ringing. At least they were in harmony.
What I do now is create white noise. I have an air freshener and a fan when I sleep. Now, I don't notice the tinnitus unless I focus.
Insomnia is/was the other hallmark. I have not conquered that yet but I'm close.
I will look into Lucenda's link along with other helpful options.

Hey look, we all do better if we had a drill sergeant coaching us at every struggle that arises.
In the absence of that....this works for me
I "force myself up in the morning" even if I only have 4 hours sleep. I specifically focus on my family and what I am grateful for. Not how crappy everything is or how did this happen. I have to power through the LAZY that is natural to me. My focus remains on family and gratitude. Without that I wont get out of bed until 12:00 or 1:00 pm.

I power through the day without a nap, it's not that hard and I stay hydrated with fruit snacks, then I'm ready for bed at normal time.
Also, very hot shower before bedtime helps too.
This is a must if you want to conquer insomnia.
TURN OFF THE DEVICES, TV, ECT AND READ SOMETHING POSITIVE. If you're bored, great.. sleep is close.
BTW, getting up early and getting your hustle on is always step 1 to getting your financial house in order. You can do this. Perhaps all you need is to coach yourself up!!!
Of course you will have to power through some discomfort, That's why a small success means so much more then if someone bailed us out.

As long as we are physically able, we feel better working, even if for a minimum wage then hoping, or being at the mercy of someone handing us a ration.
ACA is a lifesaver by the way. Get that!
You got this Mike!!

Please keep us up to date and anything new that helps.

 
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline lporterrn

  • Member
  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #9 on: September 13, 2017, 10:15:59 pm »
My turn to say great advice! You are so right on about turning off the electronics. Time to turn this off so it doesn't mess with my serotonin levels! Sleep is precious.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline lawrosa

  • Member
  • Posts: 31
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #10 on: September 14, 2017, 04:07:16 am »
well 4:04 am... I guess ill try to lay down.. I take 5 mg melatonin at 12am but has no effect on me...
MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #11 on: September 14, 2017, 07:55:38 am »
Mike, thanks for continuing to post. You've got me remembering a time in my life when near everything seemed hopeless and I hadn't yet found a way out. I may have to re-experience that hellish place longer before I can write something that doesn't sound like just a bunch of words. Meanwhile, please know that you are not alone.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #12 on: September 15, 2017, 07:36:08 am »
Mike, just want to let you know I don't forget about you and your challenges. Even when I'm busy trying to solve the crises I'm dealing with right now, you're in my heart.

A couple of quick questions:

1. Does where you live have a central help line? (Where I live a person can dial 211 "first call for help" to find out what assistance is available for the kinds of practical problems you're dealing with along with the health problems.)

2. Are your children in good health?

Thanks.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline lawrosa

  • Member
  • Posts: 31
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #13 on: September 15, 2017, 01:17:55 pm »
I dont think there is a central help line. I never looked into that. I think our governer put something like that in place for the opiate epidemic thats going on.

Yes my children are all in good health.

So anyway 1 pm I just woke up...lol.. Was a 10 hour sleep day.. So I do sleep but its not normal for me to sleep that long.

So I was talked into going to see a endocrinologist which I set an appointment for. So I paid into my cobra plan to continue my health insurance. This will be costly to me but its my last step to my gland system.

It would seem my tiredness, head fog, pimples, disrupted sleep pattern might be related to thyroid, adreanal, pituitary gland. Oh and the occasional bloody nose too..

And lets not forget ringing in the ears.... RRRRRIIIIINNNNNGGGGGGGGG!!!!!!!

I guess bowel movement has been different ever since before last christmas..

And I dont want to get weird but my libido has changed.. And all this happened suddenly, so I know alot of you say it may be an age thing.... Its not that..

Its like everything down there is getting smaller lol Like a hormone issue..  Testosterone levels are 375.. So I dont know..


So lets see what happens there..

Because Im not hep C no more. I am low on the liver f1-f2 score...

So its either harvoni side effects or right know a gland issue..

I dont know what else to do..

that came back neg

Celiac
Lymes
HIV

I cant think of anything else major I been tested for. All my blood tests are pretty normal, but I know thyroid needs more testing then just the T4 on the standard screen.
MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline lawrosa

  • Member
  • Posts: 31
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #14 on: September 15, 2017, 01:22:41 pm »
Oh and thank you all for sticking with me.. I love you guys here...I appreciate it from the bottom of my heart..

1:19.. I have been up for 30 minutes. The fog and tiredness is rolling into my brain... Ugggg.. But I got 10 hours sleep..

And just to let you all know.. I am a guy that never needed that much sleep.. Im a 4-5 hour guy. Up always @ 5 5:30 to start the day... etc..

Remember this is all sudden.. Started christmas, off harvoni june 3rd..

I really dont think my original issues were hep c related.. But dummy me drank the kool aid and took the harvoni.. I should have read more about it...

Ugggg I dont know....
MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #15 on: September 15, 2017, 02:40:30 pm »
Mike, thanks for the updates. I'm relieved you've still got the cobra and a new angle the docs are looking into. And I enjoyed that bit of humor you slipped in.

About sleep: there have been a few recent books by sleep experts that say that before the industrial revolution, the typical human pattern was to get a partial night's sleep, then be awake doing stuff for a couple of hours, then back to sleep for a while. Then along came assembly lines, when humans became cogs that had to adjust their sleeping hours to keep the factories running 'round the clock.

. . . Yes my children are all in good health. . . .

I'm super glad to hear that. A thing to be thankful for. Now that I've revisited that horrible time in my life when I felt hopeless for ages, I remember that what began to turn things around for me is that I forced myself to think of just one thing I felt thankful for each day. Sometimes the best I could do was be glad I didn't have person X's problems in addition to my own.

Rest assured, we'll keep sticking with you.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline lporterrn

  • Member
  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #16 on: September 15, 2017, 03:00:04 pm »
Gantty, your words are balm to many of us. I'd like to add that I've been looking for beauty in the ordinary. It really helps.

Insomnia hardly happens anymore, but classical music sure helps in the middle of the night, where the news is something I sure want to avoid at all hours, but especially when trying to sleep. That blue light from devices is a sleep stopper, whether the news is good or bad!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline northfork

  • Member
  • Posts: 55
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #17 on: September 15, 2017, 04:19:08 pm »
And the red time display from digital clocks. Just a jolting reminder that IT'S 3AM AND YOU'RE STILL AWAKE. :-\
Probably infected 1969. Diagnosed 2006. Genotype 1b.
Daclatasvir/ Asunaprevir 2013:relapse
Harvoni 24 weeks 2015:relapse
sofosbuvir, velpatisvir, voxillaprevir  trial started on drug 7/16. Viral load 890,000 approx. F2. Undetected after week 1.
12 week SVR achieved Jan 2017.
SVR 24 achieved April 2017 !

60 weeks post treatment...UNDETECTED!

Offline lawrosa

  • Member
  • Posts: 31
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #18 on: September 15, 2017, 07:42:03 pm »
So the gland doctor will not see me unless I get a general doctor to say something is wrong with me..

So dumb me payed 900 this month to continue coverage but now i have to go back and see the general doctor...

Waste of money... I guess Ill see if I can get him to test me for T3 /reverse t3 tyroid test...

If anyone knows anymore tests I can try to get the general to do let me know. I go monday...
MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline gnatcatcher

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  • Posts: 1,372
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #19 on: September 16, 2017, 06:59:23 am »

...If anyone knows anymore tests I can try to get the general to do let me know. I go monday...


What can help the doctor figure out what else to test for is to hand the doctor two sheets of paper:
Page 1. a list of every symptom you've experienced recently;
Page 2. a list of the special circumstances in your life right now (unemployment, money woes, .... );
Also on page 2: a list of recent changes you've made in your life (no alcohol since Christmas, not eating meat, taking baby aspirin [when you started and, if you stopped taking it, when you stopped], ... )

To get you started, I'm re-reading this thread, trying to collect the symptoms you've named:
insomnia
high cholesterol
ringing in ears
sense or worry and depression. Feeling useless. Not wanting to talk to anyone. Not feeling like doing anything.
elevated blood pressure
feeling like crap
brain fog (recent)
fatigue
pimples
[I've probably missed a few things.]
...

Doctors have really appreciated it when I hand them these kinds of lists. It allows them to see both the forest and the trees and leaves enough time in the appointment for them to figure out what they may have overlooked, to ask you good questions, and to explore possible diagnoses in their heads. That helps them figure out what else to test for.

Good luck Monday! I'll be sending positive vibes for your doctor to have great clarity and insight.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline lawrosa

  • Member
  • Posts: 31
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #20 on: September 16, 2017, 09:55:41 pm »
Boy it sure sounds like I have a thyroid issue...

What scares me is if I do the meds sound scary with the side effects..

https://www.tinnitusformula.com/library/thyroid-dysfunction-and-tinnitus/

https://www.tinnitusformula.com/library/thyroid-dysfunction-and-tinnitus/

Im tempted to run out and get the animal based over the counter pills here to see if they have an effect.. But I guess ill wait till Monday.. Hopefully ill get blood work then..

IDK why my doctor cant/ couldn't of requested a full thyroid panel be done with my symptoms...

AAAARGGGG...

Not feeling well tonight .. ears ringing bad and head is heavy.. Tired.. Very tired...
MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline lawrosa

  • Member
  • Posts: 31
MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #22 on: September 17, 2017, 04:14:32 pm »
Yes, thyroid issues are more common in people who had or have hep C than in people who didn't/don't. Autoimmune issues, too: Hep C is an RNA virus that mutates, which confuses the immune system big time. Then along comes a new, powerful ally (the treatment), and some immune systems seem to get confused by the sudden help. It can be a fierce battle, perhaps with something like post-traumatic stress for the immune system afterwards. Several autoimmune diseases (e.g., lupus) cause severe fatigue.

Fingers crossed your doctor can connect all the dots. I'll be thinking of you tomorrow.
« Last Edit: September 17, 2017, 08:40:56 pm by gnatcatcher »
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline northfork

  • Member
  • Posts: 55
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #23 on: September 17, 2017, 06:06:21 pm »
I believe Hep C is not  a retrovirus, but a flavivirus. HIV is a retrovirus.
Probably infected 1969. Diagnosed 2006. Genotype 1b.
Daclatasvir/ Asunaprevir 2013:relapse
Harvoni 24 weeks 2015:relapse
sofosbuvir, velpatisvir, voxillaprevir  trial started on drug 7/16. Viral load 890,000 approx. F2. Undetected after week 1.
12 week SVR achieved Jan 2017.
SVR 24 achieved April 2017 !

60 weeks post treatment...UNDETECTED!

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #24 on: September 17, 2017, 08:40:03 pm »
I believe Hep C is not  a retrovirus, but a flavivirus. HIV is a retrovirus.

Thanks. It was a hepatologist who told me it was a retrovirus like HIV, but that was in 2003, so I guess they've learned a lot more since then. Anyway, I see that it's still an RNA (not DNA) virus and still considered to mutate (which is the crucial point): http://www.epidemic.org/theFacts/hepatitisC/anatomy/
I'll edit my earlier post.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline andrew j

  • Member
  • Posts: 476
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #25 on: September 17, 2017, 11:04:17 pm »
Hi Mike,

Sorry that things aren't the best for you at the moment.

I am about a year or so post-Tx.
I seem to have been left with a lack of energy ... a deep, residual tiredness, that just doesn't seem to want to go away.
I don't know if it was the Tx - or has something to do with a horrible staph. infection I got a few months before I started Tx.
I had to have a couple of operations, one of which went wrong - and was on heavy-duty antibiotics for months.
Maybe those were factors?

Also, I just recently turned sixty (Argghhh!!) ...

Like you - BP has just gone up.

I've been toying with this thyroid stuff for years.
My GP recently gave me (another) blood test for thyroid function - but I haven't actioned it yet.
Too much other stuff going on ...

You've inspired me to follow it up.

I've been taking an 'alternative' thyroid support product for years.
... Don't know if it's doing anything?!
The co. that makes it, here in New Zealand ('Clinicians') also makes a 'whole thyroid' product - whatever that is - which I've never tried.
If my memory serves me - it has to be kept refrigerated.

So, you know - there are alternative products out there.

Hoping that your Dr. can shed some light on things for you - and that you start feeling better soon.

Best wishes,
A.
« Last Edit: September 17, 2017, 11:06:06 pm by andrew j »

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #26 on: September 19, 2017, 10:58:48 am »
Mike, how did things go yesterday?
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline lawrosa

  • Member
  • Posts: 31
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #27 on: September 19, 2017, 12:18:54 pm »
Well it seems doctors dont want to entertain much about thyroid issues.. It was like pulling teeth..

He did not want to run extra blood tests I asked for as he said insurance will/may kick it back.. I said I didn't care. If they do Ill pay whatever it cost.. It was a 1 hour battle with him..

I did manage to get up 8:30 today!!!! WHAT!!!!! lol.. Im so tired..

So I got an ultrasound of my thyroid today and the needed bloodwork with t3/free t3 t4 etc.. Also an adreanal gland test for cortisol.. And a basic full panel again/ b 12 etc.. Was a bunch on there.. Ill get results in a few days..

So I read up on supplements and the thyroid. I stopped a the health store and got some animal thyroid, adrenal, pituitary gland tissue pills..

One thing I read, if I did do have thyroid issue I certainly dont want to go on synthetic meds. I read
nothing but bad things on them..

So I really dont know until I get my results back...

Its real crazy that you cant see an endocrinologist unless a doctor finds something.. And the doctors themselves dont want to entertain you with thyroid conversation..

Talking to my mom who has celiac, ( I dont have it.. was tested) she says auto immune disease attacks the thyroid...

IDK.. Im going to lay down..ha ha.. Im exahusted.. Be back later..

MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #28 on: September 19, 2017, 01:25:05 pm »
Mike, thanks for the update. I'm starting to wonder how much your doctor knows about autoimmune diseases or pretty much anything besides common problems. Is this doctor a "gatekeeper" such that your insurance won't let you see a specialist without a referral from your primary care doctor (PCP)? If so, and if the thyroid results don't solve the mystery, you may need to switch PCPs in order to be taken seriously.

Your mother's correct about the thyroid being a possible target of an autoimmune response by your immune system. Here's a good page on autoimmune thyroid issues: https://www.drugs.com/cg/autoimmune-thyroid-disorders.html
Since your mother has celiac disease, and celiac disease is an autoimmune disorder, you have a family history of autoimmune disease and therefore are at increased risk for autoimmune thyroid disorders.

Autoimmune diseases are tricky to diagnose. The associations for each possible diagnosis may be able to help you get treated sooner. Here's one for the thyroid:
https://www.thyroid.org

I hope the supplements you purchased will improve things.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Mugwump

  • Member
  • Posts: 759
  • My number of posts means nothing, piscor ergo sum!
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #29 on: September 19, 2017, 11:57:19 pm »
The only way to diagnose a thyroid disorder is to monitor the TSH levels over time. If your TSH level drops it means that you are creating thyroid hormone adequately or in my case for years my thyroid created too much hormone. And as Gnatty stated thyroid disorders are more common with long term HCV infection.

I have been on hormone replacement with levothyroxine since 1991 with no issues. Yes it is a replacement hormone but is exactly the same molecule produced by the thyroid to regulate cell energy metabolism. 

Yes if you meddle with the amount you take and do not do it regularly it can cause serious issues. I am very strict about it and find no issues with it at all.

It is a common and false belief that you also need to take the hormone that your parathyroid creates. This is blatantly false, if your parathyroid function completely goes you will not be able to metabolize calcium properly and it is a completely separate issue from thyroid dysfunction. So what happens is some people with no clinical knowledge spread false information about the treatment and management of thyroid diseases and the so called "natural source" supplements peddlers have a field day!

Like I have said before taking thyroids out of dead animals and mixing it in a milk shake with inadequate measurement of the dosages is quackery at its worst! The only reason why they get away with this crap is that the product is covered by food laws not pharmaceutical regulation. GRRR!!!!
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline andrew j

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  • Posts: 476
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #30 on: September 21, 2017, 05:26:17 am »
Yes.
Certainly, 'low thyroid' was a flavour of the month in the late 90s / early 2000s, in alternative medicine circles.
It just happened to be true for a number of us with Hep C, and notably some (like me), that had been hammered by interferon.

Drs here can prescribe and monitor whole thyroid - or one product, anyway.
Trouble is, it's made from pig's thyroid, which is always going to be a problem for some people.

Whatever the case - unless you're taking a fairly innocuous product like I am, you should be supervised by a Dr - as you say, Eric.

One indication of hypothyroidism / low thyroid is noticeably foreshortened / thinning eyebrows.
« Last Edit: September 21, 2017, 05:35:36 am by andrew j »

Offline lporterrn

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  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #31 on: September 21, 2017, 11:07:36 am »
There are a lot of myths surrounding thyroid. It usually is a very simple, straight-forward condition to diagnose and treat. I would not attempt to self-treat or take supplements unless under medical advice. Just saying...
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Mugwump

  • Member
  • Posts: 759
  • My number of posts means nothing, piscor ergo sum!
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #32 on: September 21, 2017, 11:53:52 am »
There are a lot of myths surrounding thyroid. It usually is a very simple, straight-forward condition to diagnose and treat. I would not attempt to self-treat or take supplements unless under medical advice. Just saying...
Precisely. With the thyroid the stimulating hormone levels become confusing in relation to the actual levels of hormone in the blood. The reason for this is the TSH paradox. Simply put when your thyroid is attacked by your immune system it can do one of two things it can start to over produce hormone as it did in my case or it can quickly cause the destruction of the gland and lead to low levels of thyroid hormone in the blood. Either way you can have elevated levels of thyroid stimulating hormone happening in a feedback loop or low levels of TSH if your gland is overproducing for a long period of time. So to adequately deal with all thyroid diseases it takes clinical monitoring plain and simple. Relying on diagnosis through symptoms and self medication is a fools gambit and down right dangerous.

Too much thyroid hormone in the blood for any reason causes the body to not use the molecules and the molecules then break down into chemicals that cause all sorts of nasty effects.
  • elevated blood pressure
  • headaches
  • heart beat irregularities that can lead to heart damage in extreme cases
  • lack of sleep
  • over time bulging eyes
  • mental confusion and in extreme cases psychological issues including paranoia and other mental disturbances
To sum up if you take extra hormone from any source it can cause some very serious health issues if not done with clinical support.
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

Offline lawrosa

  • Member
  • Posts: 31
MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline dragonslayer

  • Member
  • Posts: 871
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #34 on: September 21, 2017, 03:00:26 pm »
im waiting for results so ill let you know..

I was considering this..





https://www.vitaminshoppe.com/p/thyroid-complex-100-capsules/vs-1597?mr:trackingCode=8F275D84-C9E0-E511-80ED-00505694403D&mr:referralID=NA&sourceType=sc&source=SHOP&acqsource=adlucent&utm_source=Shopping&utm_medium=CSE&utm_campaign=the%20Vitamin%20Shoppe&utm_content=VS-1597&gclid=CjwKCAjwxo3OBRBpEiwAS7X62SlLlPi9xFvJRGL2Dnpy8UQlQGkiL5_KGam7TbIhLLQwPD7lMOx2YBoCxLYQAvD_BwE

I wouldnt.. As has been intimated above, you need to have your TSH level monitored and your thyroid medication adjusted until its within range.    Plus, products like this are unregulated and, despite what you see on the label, aside from the fact that you wont know if  its doing you any good or harm without being monitored, you really have no idea what is in the bottle.
« Last Edit: September 21, 2017, 03:02:55 pm by dragonslayer »
Paul

DX 2008
Started Harvoni 11/26/14 for 8 wks
Completed 8 wks Harvoni 01/20/15
EOT RNA Quant result:  Detected 29
7.5 wk post tx: Detected < LLOQ(12)
11 wk post tx: UNDETECTED SVR12
24 wk post tx: UNDETECTED SVR24; AST 26; ALT 22; ALP 73
48 wk post tx: UNDETECTED SVR48; AST 18; ALT 18; ALP 70
GT 1a
vl 2.4mil
2008 bpx: Stage&Grade 0
2013 bpx: Stage&Grade: 0-1
IL28B: TT
likely infected early '70s

Offline andrew j

  • Member
  • Posts: 476
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #35 on: September 22, 2017, 06:01:20 am »
That's pretty good advice, I think.

You're obviously having a rough time at the moment - so I'd be be a bit cautious about taking anything new right now.

The product I take is Clinicians 'Thyroid Support Plus'.
It looks similar to the product you're looking at.
Look it up, and see what it contains.
I take tiny amounts - much less than the recommended dose - and, as I say - I don't know if it's really doing anything.

Like you (again) - it's time I saw the Dr again about this thyroid stuff.

I'll be interested to see what your Dr says.

Best regards,
A.



« Last Edit: September 22, 2017, 10:29:34 pm by andrew j »

Offline lawrosa

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  • Posts: 31
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #36 on: October 01, 2017, 05:28:28 pm »
Im back guys..

Whats been going on..

Still not feeling well.. ringing in the ears heavy head, sleeping 10 hrs a day.. seems at night 2 am I come to life..

All my symptoms seem to stem from thyroid..

Well after pulling teeth with the doc to get ultra sound and more pronounced blood work for thyroid here are my results..

As what they discribe from the ultra sound I have a 8x7x6 mm cyst, posterior midpole, tiny mural nodule on my right side of thyroid... Geez this is what I been telling them for a while.. Is this causing me what I am feeling? IDK.. But now I can see the endocrineologist becuase they found something... lolol..

Dont you love main stream medicine..

My blood test are somewhat normal..

Total cholesterol when down to 199..( <200) ( Thats crazy from the 220? previously. How can it adjust that fast?)
LDL 133.. ( <100)
 HDL 41 ( >40)

Thyroid...

THS 2.77  ( .4 - 4.50)
T3 total 125 (76-81)
T3 free 3.5 (2.3-4.2) ( Didnt they lower this standard?)
C reactive protein 2.4 (<8)
T3 reverse ( 20 ( 8-25)

Seems normal but it depends who you talk too..

I had him check my cortisol levels and viola they were 1755 ( 200-1100)

This was one test and I think I will have endo doc do an AM/PM 24 test.. With syliva, urine, etc..

Becuase this fluctuates on time of day, but it would seem I am over producing..

Could this be my issue? IDK..

So the only thing I been taking is my acid reducer 40 mg.. ( Acid production related to thyroid controlling pancreous?)

A proabotic

and the Raw glandular pill.. ( Can this be why I seem to be coming around a bit..)

Today I mowed the lawn, did heavy weeding, weed whacker, leaf blower, pulled camper out driveway to get driveway weeded good, etc etc..

Man am I tired now..

So I see endo on the 9th.. I will let you know..

Oh just to say on the liver side of it.

AST14
ALT11
Alk Phosphate 81
bilirubin .7

White Blood count 7 thous (3.8-10.8)
RBC ( 5.05 Mill _4.20-5.80)
Platelet 202 thous (140-200)

Thats all I got for now..

And Thank you all again for your support and help... :)

« Last Edit: October 01, 2017, 05:32:33 pm by lawrosa »
MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline andrew j

  • Member
  • Posts: 476
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #37 on: October 02, 2017, 05:16:06 am »
Hi Mike,

I'm not particularly scientific, but your thyroid results look pretty normal to me -  and might, if anything, be a bit on the high side? (T3 total?).
If that's the case - and given that you're seeing the specialist in a few days - maybe it'd be best to hold off on that thyroid product until you've seen him / her.
That way - s/he can assess your true situation - and also advise on whether the product you've bought is a good idea for you, or not.
You know - it's a real opportunity to sort the situation with your thyroid (- and maybe some other things, too?) ...

I don't know enough to comment on your other results.


Best regards,
A.

« Last Edit: October 02, 2017, 09:53:56 pm by andrew j »

Offline I fightis thetitis

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  • Posts: 126
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #38 on: October 03, 2017, 03:48:59 am »
Mike,

Good news there has been some progress for you. Also your liver labs look good and everything in normal range. Thyroid just may be where your symptoms are coming from.
Your circadian clock is out of balance if you are up at 2:00 am.

More good news is you seem to be on the road to turning it around.

Best of luck and we will keep checking in on you.
Greg
M59  56@start of TX. date infected:1976
diagnosed 1997 - asymtomatic
Genotype 1a
AST 111 -ALT 124 - AFP -89
Viral Load 1900000 - Log 6.28
Fibro Test F4 ActiTest A3
Harvoni 24 wks - start date 11/24/15

6 Week Labs VL Undetected!
104 weeks EOT Undetected.

8/25/17 Fibrosure score 80 = F4
11/10/17 Fibroscan 7.5 mean 1.6 m/s = F2
8/2018 Ultra sound normal.

Offline lawrosa

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  • Posts: 31
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #39 on: November 01, 2017, 06:05:55 pm »
Im still alive but its the same old crap for me..

Sry I havnt been around. I am fighting the fight here..

Unemployment ran out and I am trying to get on assistance in all areas. No job yet. Lots of interviews. But I am too tired and foggy in the head with severe ringing to do much...

Endo doc I went to was a joke I guess. All tests came back neg.... Yay!!!!   :-\

Uggg still cant find anything...

Cyst on my thyroid is not the cause of any concern...

Thyroid, pituitary, andrenal's not my issue..

So I went to a rheumatologist. Im desperate.. Epstein barr came back neg and the slew of other blood tests he gave me. Hi antibodys of epstein though that I am sure everyone has... Those that had MONO I assume...

He is entertaining the idea of Fibromyalgia or chronic fatigue syndrome but wants me to do a sleep study.. Paper work is in progress for that and possibly that may turn up something...

Also on my own I have scheduled an appt with a Nurologist... Just to rule out anything with the brain.. Hopefully get a brain scan or he may know something others dont..

After that I am out of options.

I will have been to every doctor I can think of...  Whats left? Heart doc?


If anyone wants to know any result of any and all blood tests I have had, just ask... More or less it all comes back normal..

I am at wits end. I am so tired, and my muscles all hurt. The foggy head is bad today as well as the ringing..

Oh, the rheumatologist did prescribe me elavil 10 mg, and gabapentin 100 mg to take at night.


The first night I took it I felt like a million bucks the next day. the ringing was almost gone and I felt great... well that did not last long and the next day I was back to the cloudy head, tired, and ringing, muscle ache..

May have been a fluke..

IDK anymore... I can only take it one day at a time... But feeling this way quality of life sucks pretty bad...

Thanks all for your support and listening..


I dont know if there are other forums I should be on or not. I come here because this is where it all started...




MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline gnatcatcher

  • Member
  • Posts: 1,372
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #40 on: November 01, 2017, 08:09:12 pm »
Mike, thanks for checking in. Sorry you've had only one day of feeling great and no progress except for ruling a bunch of things out.

The sleep study might well turn something up -- there's a new book out by a sleep expert who says there are more than 100 sleep disorders. Title: Why We Sleep. Author: Matthew Walker, PhD. Since you'll be seeing a sleep expert, no need to read it unless you think it might cure your insomnia -- the author claims he'll be happy if people fall asleep reading his book!
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Dan513

  • Member
  • Posts: 3
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #41 on: November 03, 2017, 08:39:33 pm »
 Hi Mike I'm Dan been reading your post and it makes me feel bad. I finished 180 days of Sovaldi and Riboviran 11/2015. I started the treatment at 170 lbs finished my weight was 134 and today its 119 lbs. Like you I wanted help but I have found that the doctors have no idea what to do, they send me for test nothing shows up. I have been exhausted most days and over a year ago I woke up and found my right hand middle 2 fingers locked folded and was in bad pain using my other hand to straightened. I pretty rattled and hoped it was a 1 time thing, well it was the beginning within 3 weeks all my joints were painful, so it was the beginning of my search for an answer my primary sends me to a rhuemetoligist. First appt he diagnosed trigger finger some osteo and mild fibromyalgia I said you are telling me it comes on overnight? I told him I had a pair of knee braces on are my knees and neck and my other joints all with pain is trigger finger and his answers were few and I knew he didn't know the answer. He prescibed  something for joint pain I'm sorry forget the name but it did nothing but add nausea to the list for 3 days until I tossed it. So after getting sent to assorted Drs and taking meds for joint pain and nothing working I am giving up on Doctors and the scripts they were giving me they were adding to the mess. I recently met a nurse practitioner who is into hollistic remedies and she has cured herself of cancer, so yea I wanted to talk her I have been to 1 appt she recommended some things so I picked a few items up. For the run down feeling she recommended Vit B12 liquid and it helps its taken under the tongue and it does clear the head and you feel it but its mild the point is some help is good. A few teas I picked up for joint pain I haven't noticed change yet, I do believe I will stay on this and see what happens I don't feel like I have many options and like you I just want help to get some energy back and not be a mess when I get out of bed in tough shape. Anyways I know how you feel and wish you luck and if you want I will pass on anything that helps from the hollistic side it may work, but hang in and keep moving and look at the diet we as Americans eat some bad stuff. Good Luck Mike   

Offline lawrosa

  • Member
  • Posts: 31
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #42 on: November 03, 2017, 11:58:04 pm »
Thanks dan..... I appreciate your post.... Im so sick................................
MiKe L.

Intravenous drug user 1980's (25 years clean)
HCV genotype 1a
4/8/17-6/3/17 Harvoni

Before treatment: 2/7/17

Viral Load 2,458,720
Fibroscore 0.34 [F1-F2]
NAS 0.20  [A0-A1]
Bilirubin 0.7
ALT 48
AST 37
ALP 78

Cholesterol
LDL 108 ( bad)
HDL 57  ( good)
Total 180

Most recent: 7/27/17

Viral Load UNDETECTED

Bilirubin 0.6
ALT 10
AST 13
ALP 93

Cholesterol
LDL 148 ( bad)
HDL 47    ( good)
Total 221

Offline andrew j

  • Member
  • Posts: 476
Re: Still cant find whats wrong with me. Chasing a Dragon...
« Reply #43 on: November 04, 2017, 06:48:23 pm »
Hi Mike (and Dan),

As you might have gathered - nobody really knows quite what to do about the predicament you find yourselves in.
A number of people have come here now who have experienced adverse reactions to Harvoni (and other DAAs) ...
The way they describe what's going on for them - like the way you guys are describing it - is always broadly similar.
It's as if your immune systems have been activated, but can't re-set properly?
...

... What to do?

The doctors don't seem to understand what's going on yet - which is why you get left not knowing what the hell's going on.

Most people seem to have contacted the FDA, and Gilead - to report adverse reactions to their drugs.
They must know more about the mechanisms involved by now - and may have some useful information.
... Research will be going on into this, because even if most people recover well - some clearly don't - or haven't - and there are a number of others who have recovered, but who are left with milder symptoms than yours (e.g. tiredness, tinnitus, body aches etc).
It seems to be a matter of just fighting through it, giving it some time - and hoping that your immune systems calm down a bit.
... (Groovy?!! ...).

Get all the help you can!!

There seem to be support groups operating ... I had a quick look on the internet.
e.g. threads on Rx MedsChat.com ... via Dr. Janet Woodcock at change.org - and I think there are threads running at Fix Hep C Buyer's Club.
(There are one or two locked threads further down this section.
Have a look at them, too) ...

Other than that - I'm just really sorry you are having to go through this sh*t.
It's really upsetting to think that you guys have gone into treatment expecting a cure - but instead have wound up feeling half-destroyed.

Look after yourselves - and hoping that you are doing OK today,

A.
« Last Edit: November 05, 2017, 12:26:43 am by andrew j »

 


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