Aa
Should I quit TX early - toxic goiter, platelets dropping
I've stayed away from the forum because my sx have REALLY been rough on me - making concentration and reading difficult to say the least. Reading in this particular format triggers vertigo for me. I miss everyone so much - but truly have not been able to handle the forums for quite some time. So - hi to everyone and I hope life is going as well as it can for all.
My stats:
Female 49 years old
Athlete (stunt woman) pre TX
Lost my gallbladder, and acquired bile duct dysfunction, liver trauma and HCV all in one spectacular motorcycle accident...
Was not informed of my HCV status until a YEAR after the gallbladder surgery.
Began treatment September 10, 2006
Started on Riba at 1000 per day
and Peg 180
Was reduced to 800 riba in week 16 due to massive weight loss, rash, and low creatine clearance (bile duct and liver trauma - kidneys were/are unhappy with the extra work)
Starting weight was 140 pounds of mostly lean muscle mass
I now weigh a "wasted" 98 pounds - not much muscle left now
I am 5 feet 81/2 tall.
Genotype 1A
Starting viral load 5,000
Und <615 week 4 (didn't know about better tests)
Und <2 week 12
Have remained UND <2 ever since
Have had debilitating weakness, nausea, vertigo and anorexia throughout TX
Diagnosed with toxic multinodular goiter in April, been on thyroid suppressant since April 16th - I refused RAI until AFTER TX
HGB has been "bouncing" between 9 and 10 since the second week of TX (started at 16)
Platelets were steady at 179 from week 3 (started at 250)
Recently have had platelets begin to drop - my platelets went down to 160 in April
No test in May
June 8 platelets down to 138
June13 platelets down to 100.
I am even MORE miserable than ever. The antithyroid treatment seems to make me feel WORSE. - though it's probably those pesky toxic nodules.
I have had TWO episodes of massive headache, fever, and for lack of a better word "confusion" in the past month.
The first episode lasted three days and I was COMPLETELY helpless. The second episode I went to the ER and received IV fluids and Ativan (anti nausea). My blood pressure was extremely low (98 over 40) and my pulse elevated. Fever of 101 dropping down to normal within hours of receiving the ativan and IV fluids. Nobody (doctors in ER) seemed to know what this is from. Both my Liver Doctor and my Endocrinologist suspect the toxic goiter is "surging". Neither recommends RAI while on tx. . All I can say is that it is very scary. Also I drink 120 ounces of water a day - WATER, along with protien shakes, and juice. Not suffering from "the runs" either. So the dehydration thing seems weird...
Now I see that my glucose is beginning to rise,
I am trying to decide if my chances of clearing if I go the whole 48 weeks (I only have 9 shots left) are good ENOUGH to endure what seems to be going to be an even rougher last few weeks.
Or - if I quit after this next shot (which would be 8 weeks early) would I be saving myself from further "damage" at the cost of possibly NOT becoming SVR?
Or - is the damage already done - and should I just go ahead and finish?
I've been debating this alone for quite some time now - and I have come to no conclusions. My liver doctor wants me to taper down the riba - 300 for 2 weeks, 200 for two weeks, 100 for two weeks and then zero to tx end. Says I've more than likely got enough riba in my system already. Also wants me to lower interferon from 180 to 150 - because of my platelets dropping and my low weight. Says I can quit now and have a "good" chance or continue to the end and have a "great" chance of clearing...
Any input advice, statistics, information etc. would be greatly appreciated.
I have TONS of lab work so if I left anything out and you want to know - I can probably provide the numbers...
Thanks,
Compulsive
My stats:
Female 49 years old
Athlete (stunt woman) pre TX
Lost my gallbladder, and acquired bile duct dysfunction, liver trauma and HCV all in one spectacular motorcycle accident...
Was not informed of my HCV status until a YEAR after the gallbladder surgery.
Began treatment September 10, 2006
Started on Riba at 1000 per day
and Peg 180
Was reduced to 800 riba in week 16 due to massive weight loss, rash, and low creatine clearance (bile duct and liver trauma - kidneys were/are unhappy with the extra work)
Starting weight was 140 pounds of mostly lean muscle mass
I now weigh a "wasted" 98 pounds - not much muscle left now
I am 5 feet 81/2 tall.
Genotype 1A
Starting viral load 5,000
Und <615 week 4 (didn't know about better tests)
Und <2 week 12
Have remained UND <2 ever since
Have had debilitating weakness, nausea, vertigo and anorexia throughout TX
Diagnosed with toxic multinodular goiter in April, been on thyroid suppressant since April 16th - I refused RAI until AFTER TX
HGB has been "bouncing" between 9 and 10 since the second week of TX (started at 16)
Platelets were steady at 179 from week 3 (started at 250)
Recently have had platelets begin to drop - my platelets went down to 160 in April
No test in May
June 8 platelets down to 138
June13 platelets down to 100.
I am even MORE miserable than ever. The antithyroid treatment seems to make me feel WORSE. - though it's probably those pesky toxic nodules.
I have had TWO episodes of massive headache, fever, and for lack of a better word "confusion" in the past month.
The first episode lasted three days and I was COMPLETELY helpless. The second episode I went to the ER and received IV fluids and Ativan (anti nausea). My blood pressure was extremely low (98 over 40) and my pulse elevated. Fever of 101 dropping down to normal within hours of receiving the ativan and IV fluids. Nobody (doctors in ER) seemed to know what this is from. Both my Liver Doctor and my Endocrinologist suspect the toxic goiter is "surging". Neither recommends RAI while on tx. . All I can say is that it is very scary. Also I drink 120 ounces of water a day - WATER, along with protien shakes, and juice. Not suffering from "the runs" either. So the dehydration thing seems weird...
Now I see that my glucose is beginning to rise,
I am trying to decide if my chances of clearing if I go the whole 48 weeks (I only have 9 shots left) are good ENOUGH to endure what seems to be going to be an even rougher last few weeks.
Or - if I quit after this next shot (which would be 8 weeks early) would I be saving myself from further "damage" at the cost of possibly NOT becoming SVR?
Or - is the damage already done - and should I just go ahead and finish?
I've been debating this alone for quite some time now - and I have come to no conclusions. My liver doctor wants me to taper down the riba - 300 for 2 weeks, 200 for two weeks, 100 for two weeks and then zero to tx end. Says I've more than likely got enough riba in my system already. Also wants me to lower interferon from 180 to 150 - because of my platelets dropping and my low weight. Says I can quit now and have a "good" chance or continue to the end and have a "great" chance of clearing...
Any input advice, statistics, information etc. would be greatly appreciated.
I have TONS of lab work so if I left anything out and you want to know - I can probably provide the numbers...
Thanks,
Compulsive
don't know enough to advise, all I can say is that I hope you taper off and start feeling better real soon, per your doc's orders...what a trooper, probably being a stunt woman will be a BREEEEZE compared to this stuff huh? hugs and healing vibes to you! Please let us know how youre faring!!!!
Hello Compulsive: Okay so your gall bladder vanished. No big deal in the cosmic scheme of things, but avoid concentrated fats - as you probably already know. You are a lean and mean chick! After reading your stats, I say taper slowly off your tx meds - as recommended by your doctors. You may have cleared the virus by now. You are just a youngster and you are (were!) fit. Take care of your self, and give yourself a break - emotionally.
My experience with the treatment was as bad as yours. I worry about my kidneys now. It is clear to me now that standard lab tests are not accurate indicators of health. At some point we all wonder if the tx drugs are killing us. It's a tough call. Taper off slowly, look to the future, be glad you are young and strong. Consider a different career path. Be a clerk :-).
Kit
My experience with the treatment was as bad as yours. I worry about my kidneys now. It is clear to me now that standard lab tests are not accurate indicators of health. At some point we all wonder if the tx drugs are killing us. It's a tough call. Taper off slowly, look to the future, be glad you are young and strong. Consider a different career path. Be a clerk :-).
Kit
wow, you are a real trooper. you would have to be a stunt person to endure what you have so far. i know others with more experience will advise but if it was me i would quit early. enough is enough! you have all the positive factors for SVR, not overweight when starting tx, real low viral load, unde at 4 weeks. personally i would have quit at 24 weeks but the extra weeks have even made it more possible for SVR. wishing you the best
Have an Answer?
You are reading content posted in the Hepatitis C Community
Learn about this treatable virus.
Getting tested for this viral infection.
3 key steps to getting on treatment.
4 steps to getting on therapy.
What you need to know about Hep C drugs.
How the drugs might affect you.
These tips may up your chances of a cure.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
