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
Gret to hear from you and congrats on nearing the end!
best of luck whatever you decide.
maybe Sonic Bandaid will see this post and chime in with some advice.
Wyntre
compulsive, hang in there... goodness...you've been given a lot of opinions/advice... I wish you well....
pinkie cat, like your style... :)
pinkie cat, like your style... :)
hi compulsion - just wanted to extend my sympathy's to you. I have a slight understanding of what you are going through and it is horrendous.
Please believe me when I tell you that I admire you so much for making it as far as you have - I am VERY lucky in that my support network is both extensive and strong, but you, in this one post have just given me the strength to continue - I am very grateful and would like to sincerely thank you.
I am 26/48 and experiencing SOME of what you have - debilitating fatigue, nausea, vertigo and so many other sx's (I would love to write a list but I think others would think I was just being a baby :( )
I do not have the toxic nodes as you do but I do have hyperthyroidism and it alone is a doozy, I would not want to even imagine what you must suffer with the poisonous goiter.
I do have some faint hope for you though. I was at my hepatologists yesterday and we were discussing the thyroid issues and she informed me that there have been studies and it is her own experience that the people who suffer from thyroid issues seem to have the most success with SVR - Unfortunately she did not write down any info about these studies for me - and like you I am just too weak to google for articles.
I am also interested in the earlier discussion on this board that seems to suggest that if you suffer debilitating anemia then you may have improved chances at SVR ( Seeing as I have severe anemia I look to this as a positive sign for myself too )
So anyway we have to look at these things as POSITIVE signs that we are going to achieve what we desire - SVR.
Personally I would be talking to my hepatologist regarding maybe a dose reduction for your last 9 shots - You are in a very precarious position at the moment and the issue of whether you are damaging yourself without cause at the moment is a very valid one. I have reduced my RIBA for the past 3 weeks to 600mg per day due to the anemia ( it is still 8.6 as of yesterday :( ) and it has made me feel a LOT better , I am still weak but I have so few sx's as I did before now that I am able to cope much better - I have told myself that being a person of such small stature that I do not need to overdose myself to the point of the ridiculous to achieve what I want.
Yourself being so muscle-wasted could very well reduce to 600mg or even 400mg per day without harming your chances of SVR I believe and the benefits could make all the difference in hanging on for these last 2 months. Naturally a consult with your Hep doc to discuss this is your first course of action - but maybe even a reduction in Peg to 135 would be beneficial to your thyroid and kidneys ( if you havent already reduced)
I realise a lot of people here are very concerned with maintaining at least 95% of the dose over the full course of the tx - and I myself believe it to be very important - but so is my future health and as my doctor keeps telling me , even if I relapse I would have dealt a crippling blow to the virus and improved my chances at living a long and fruitful life with greater odds that I wont suffer from HCC or cirrhosis.
We all want to have a future without Hep C but we also want a future that is reasonably free of other debilitating illnesses.
I really wish you the best and I hope and pray that your future is not only hep c free but healthy and happy and you can enjoy the fruits of a wonderful exhilarating life as you obviously did before.
Jan.
Please believe me when I tell you that I admire you so much for making it as far as you have - I am VERY lucky in that my support network is both extensive and strong, but you, in this one post have just given me the strength to continue - I am very grateful and would like to sincerely thank you.
I am 26/48 and experiencing SOME of what you have - debilitating fatigue, nausea, vertigo and so many other sx's (I would love to write a list but I think others would think I was just being a baby :( )
I do not have the toxic nodes as you do but I do have hyperthyroidism and it alone is a doozy, I would not want to even imagine what you must suffer with the poisonous goiter.
I do have some faint hope for you though. I was at my hepatologists yesterday and we were discussing the thyroid issues and she informed me that there have been studies and it is her own experience that the people who suffer from thyroid issues seem to have the most success with SVR - Unfortunately she did not write down any info about these studies for me - and like you I am just too weak to google for articles.
I am also interested in the earlier discussion on this board that seems to suggest that if you suffer debilitating anemia then you may have improved chances at SVR ( Seeing as I have severe anemia I look to this as a positive sign for myself too )
So anyway we have to look at these things as POSITIVE signs that we are going to achieve what we desire - SVR.
Personally I would be talking to my hepatologist regarding maybe a dose reduction for your last 9 shots - You are in a very precarious position at the moment and the issue of whether you are damaging yourself without cause at the moment is a very valid one. I have reduced my RIBA for the past 3 weeks to 600mg per day due to the anemia ( it is still 8.6 as of yesterday :( ) and it has made me feel a LOT better , I am still weak but I have so few sx's as I did before now that I am able to cope much better - I have told myself that being a person of such small stature that I do not need to overdose myself to the point of the ridiculous to achieve what I want.
Yourself being so muscle-wasted could very well reduce to 600mg or even 400mg per day without harming your chances of SVR I believe and the benefits could make all the difference in hanging on for these last 2 months. Naturally a consult with your Hep doc to discuss this is your first course of action - but maybe even a reduction in Peg to 135 would be beneficial to your thyroid and kidneys ( if you havent already reduced)
I realise a lot of people here are very concerned with maintaining at least 95% of the dose over the full course of the tx - and I myself believe it to be very important - but so is my future health and as my doctor keeps telling me , even if I relapse I would have dealt a crippling blow to the virus and improved my chances at living a long and fruitful life with greater odds that I wont suffer from HCC or cirrhosis.
We all want to have a future without Hep C but we also want a future that is reasonably free of other debilitating illnesses.
I really wish you the best and I hope and pray that your future is not only hep c free but healthy and happy and you can enjoy the fruits of a wonderful exhilarating life as you obviously did before.
Jan.
Hiya Forsee. Yes yes I will look for you yonder. I need to look into this resveratrol thing. Grape seeds whooda think.
Kit
Kit
Believe it or not your platelets are probably ok..mine ran between 60 and 70K on tx. Many experienced docs will let them drop as low as 25K depending on your situation..just don't run with scissors and you should be fine.
I think you're drinking too much water. The rule of thumb is 1/2 your body weight in ounces per day. So if you weigh 98 lbs. you should be taking in roughly 50 oz. of water per day plus some juices and Gatorade to balance out your electrolytes. Google "hyponutremia" for more info.
Riba is also weight based, so the less you weigh, the less riba you need to do the job. The first 12 weeks of tx are the most critical with respect to full dosing , so try not to worry too much. Talk it over with your doc.
If you cannot eat solid foods, try liquid supplements such as Instant Breakfast, Ensure, and add some ice cream to boost your calories if you can..seems like most of us can at least eat ice cream on tx. You are running a marathon here..mentally, physically, and emotionally. Ultimately you and your doc need to make the decisions as to when or whether to continue tx.
Hey I do all my own stunts and I have the scars to prove it ;-)
Pinkie
I think you're drinking too much water. The rule of thumb is 1/2 your body weight in ounces per day. So if you weigh 98 lbs. you should be taking in roughly 50 oz. of water per day plus some juices and Gatorade to balance out your electrolytes. Google "hyponutremia" for more info.
Riba is also weight based, so the less you weigh, the less riba you need to do the job. The first 12 weeks of tx are the most critical with respect to full dosing , so try not to worry too much. Talk it over with your doc.
If you cannot eat solid foods, try liquid supplements such as Instant Breakfast, Ensure, and add some ice cream to boost your calories if you can..seems like most of us can at least eat ice cream on tx. You are running a marathon here..mentally, physically, and emotionally. Ultimately you and your doc need to make the decisions as to when or whether to continue tx.
Hey I do all my own stunts and I have the scars to prove it ;-)
Pinkie
just wanted to say hello to you, gonna post an article on the chat side that should give you a few chuckles...have a great weekend everybody who is reading this!!!
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