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Avatar universal

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
21 Responses
Avatar universal
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
Avatar universal
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
86075 tn?1238115091
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!!!!
86075 tn?1238115091
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!!!
Avatar universal
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

Avatar universal
Hiya Forsee.  Yes yes I will look for you yonder.  I need to look into this resveratrol thing.  Grape seeds whooda think.

Kit
Avatar universal
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.
Avatar universal
compulsive, hang in there... goodness...you've been given a lot of opinions/advice... I wish you well....

pinkie cat, like your style... :)
Avatar universal
Copyman - hi - thanks for you kind words....How have you been doing?

ELAINE - wow- how is Nick doing?  How are YOU doing....I've really missed you!

Kit07 - your right - I need to be easier on myself here, I just so  want to be able to make the right decision for myself.  Yeah - the kidney thing (amoung other things) worries me a  bit, the gallbladder - well I never was big on fatty food anyway *lol*.   I guess I should try not to worry as much.  and *lol* a clerk!!  *grinning* well - I doubt I will be changing direction THAT much, but I might be doing fewer stunts and more advising of young stunt people in the future.  While I think I can and will regain MOST of my fitness level - it's unrealistic to think I'll be "comming back" all the way.  You never know though - I might...

Forseegood - Oh - it's SO good to see your post.  and yes, I am leaning towards the taper rather than full meds finish - though on SOME days I just want to put it all down.  How is life treating YOU?

PinkieCat - Yes - my liver doc has told me from the start that he will let all my blood levels go down to transfusion level before he will worry.  The platelets dropping very fast this late in the game is alarming to ME - he simply thinks it's time to taper me off..  It never occured to me that I might be drinking TOO MUCH water.... Not even once.  After reading about it though - I think I'll tone down the water thing - maybe keep it at 75 ounces, and salt my food a bit more (been told to salt my food anyway...) THANKS for that and your other suggestions (I DO use protein powder quite a lot now...) ....And *lol* yeah I have a few scars myself...this last  accident was a doozy though.  Almost lost my darned liver over it...

txinaus/Jan  - WOW - I doubt that your a baby.  Hyperhtyroid on top of tx is NOT for babies.  It's all the worst side effects - times two.  Congratulations on  making it more than half way through treatment !!! YOUR A CHAMP!
I'd heard of the anemia and SVR theory before - I'd never heard about thyroid and SVR - but - it sounds good to me...*lol*  Yes, I think that I WILL be tapering off the meds rather than quitting all together or taking my full dose to the end.  It sounds like you have a good and sympathetic doctor on your side - I am so pleased for you.  Your a real hero for getting this far..  Also - thanks for your comment s - you really gave me a "lift"

Thank you all for responding -  It makes all this "decision dithering" much easier to bear....

compulsive
                
Avatar universal
I think tapering off the meds is a good idea. That's what I would do.
You have really had a rough time of it all, but you are strong and you have a good attitude and THAT's half the battle.

You are almost done. That's great. You have been very courageous.
173975 tn?1216257775


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
Avatar universal
So sorry to hear all of this. You are a very strong person to endure all of this. I think the tapering off is not a bad idea IMO. If you still feel horrible (hope not) with the tapering off, then maybe you would want to quit. I really missed seeing you around the forum, but I knew you were having a difficult time. The vertigo alone is a nightmare. I don't have that, thank God, but my mother gets it once in a while and it lasts a couple of days. She can not function when she gets it, so I can't imagine all you have gone through and vertigo on top of it to boot.

Tonight is my last shot. I have been fortunate. The only real sx is moodiness and all that. Anemia as of recent but no rescue meds. I hope you are able to come back on line and let us know how you feel as you taper off or what ever you decide.

I wish you the best. Just said a prayer for you.
Take care Compulsive. My heart goes out to you.
Avatar universal
Good to hear from you but sorry about the side effects.

I agree with your doctor in all respects although my non-professional guess is that your chances are "very good" not simply "good" if you stop now.  In any event, what I think he's saying is that it comes down to your decision given the totality of circumstances. If it were me, at a minimum, I'd taper down the drugs as suggested, and seriously consider simply stopping everything right now. No one can tell you the difference 9 weeks can make, but given your probable RVR, you may not need those xtra weeks at all. The caveat would be if you have significant liver damage -- stage 3 or 4 -- and in that case, taking more risk with side effects seems reasonable. Lastly, try not to make the decision with your 'competitive' stunt/racing self that tells you to go for it no matter what. This isn't a stunt or race, it's your mind and body, and you really need to try and figure out what is best for you.

Hope you feel better soon,

-- Jim
163305 tn?1333668571
Wow, you make me feel like a wimp. You've been through so much! Im 5'0' and feel too thin at 99bs.
   I can tell you that your platelets aren't low, even though they're lower than 'normal'. My doc will let them go down to 25.
  It wasn't intentional, but my dosage has been lowered and I feel like I'm being weaned off tx.  For me, its the way to go.
   Good luck, wishing you a speedy recovery to good health.
Avatar universal
I want to wish you the very best whichever way you decide to go. I can see that it has been a very rough road and you've handled it with grace and determination. Be well, Mike
Avatar universal
Gee....You all are sooo great....but really - if you'd been here with me you'd be SO OVER my complaining....*lol* Some days I am SO glad there has been nobody to know just how scared and wimpy I am about all this - other days I'd LOVE someone to bring me a hot water bottle, brew me some mint tea and just "pamper" me for a while. If a person complains and no one hears them - did they actually complain?  I have not done all this all that bravely -  many a day I stared down the riba and my peanut butter with loathing - sometimes for hours - before giving in and taking it.  Every shot I have taken has involved finding an area that still has fat on it and ...well once again - fighting my impulse to throw the darned shot out instead of injecting it.

Grandma and Espirit - thank you for your thoughts....*s*
Wyntre - *lol*  - thanks as ever for your support,  

MYOWN!!! - YOUR LAST SHOT TONIGHT ---WHOOO HOOO.....You did it.  You are a champion - you got through tx.  I hope the "moodiness" and anemia were not too terrible for you and that your sx fade quickly!!!  I have high hopes for SVR for you!!!!!  Thank you for your prayers and kind thoughts...yeah - that vertigo stuff is the pits - it's something about the inner ear and balance.  A "rare" side effect the doc says.  So sorry your mom has to deal with it.  I do keep reminding myself that it will go away after I stop taking this stuff...

jmjm - as always - very sound advice.  Yeah - it is up to me, and both docs will back me whatever I decide.  There are big risks any way I choose - but, all this input has been helpful to me ('cause mostly everyone has supported the direction I've been leaning towards - tapering off - *lol*).  Your input means a lot to me - as do your good wishes...and by the way - are you "offically" SVR yet?  

orphanedhawk - *lol* you are FAR from a wimp - as I recall your tx started out and was continuing to be quite a pain in the uh - posterier...and you made it....your almost done.  And the nuep - well - I've heard about that stuff - it has it's own unpleasant set of sides as well.   Your no wimp..  Thanks for your good wishes  and the support...

mikesimon  - Gee ....mike, thank you .  I was kind of wondering if I was being a weinie posting something like this on the medical side and all..  And thanks for the grace and determination compliment....It means a lot coming from you.  How has life been?  I'm still planning on riding my motorcycle after all this - do you still ride?  *s*  I find  there is nothing like it for stress relief and the simple pleasure of breathing in the scenery....

Take care all - and thanks for the input.  I REALLY needed the advice and support - it's a tough choice with no real "right" answer.  I am hoping my sx DO improve (especially the vertigo) with the tapering off of the meds.  I'll try to post my progress when I can....on the "chit chat " side ....*lol*

compulsive
217229 tn?1192762404
mine dropped into the 40's range. You're ok on platelets but you might consider yukking up on the Ensure, just to get a better diet in.

Good luck on staying the course - but I'm starting to believe a shorter course is what works for some.

Much healthy thoughts tossed in your direction.
86075 tn?1238115091
I'm just so impressed at how thorough you are at answering everyone's posts in your condition!...good on you...Best I usually do is a comprehensive "thanks guys!" I'm thinking you might live near me in CA with the work you do...all the best to you and please let us know how youre doing, kinda worrisome, but I know you'll pull through to your best again...what a great attitude you have!
146021 tn?1237204887
Oh my gosh, it's so good to herar from you, and I wish the circumstances were better. Sounds like  things have gone from bad to worse. I am the biggest proponent of stopping tx before it kills you. Really, as long and hard as you have fought, I think it's probably time to give your body a break. Only you can make that decision, but listen to your gut instinct on this one. I quit at 16 weeks and had a 3 month pcr yesterday. I don't know if I cleared, but no matter what, I'm glad to be off the meds. Some people can tolerate them more than others, to me, I just felt like I was at a toxic level and needed to stop. I don't regret my decision, not matter what the outcome is.
Good luck with what ever decision you make, keep in touch!
Hugs,
bug
92903 tn?1309904711
Sorry to chime in late here. It's a really difficult decision when tx isn't cut-and--dried. I know choosing when to stop and actually executing was very hard for me - you say it's tough to do the injection - steel yourself as it may be harder NOT to do it.

One thing to add into the mix that I didn't notice discussed is that late-life infections, particularly ones acquired surgically, seem to result in accelerated damage progression, and (I'm not sure on this part - someone will hopefully fill in the blanks) be more resistant to treatment.

That said - as Jim said, you likely good to go now - and the long term affects of these drugs shouldn't be discounted. Particularly in cases like yours where it's appparent they are hitting you hard.

Your mental resistance to the affects is remarkable.

Take great care.
Avatar universal
i too lost a LOT of weight during tx., could hardly eat and have thyroid nodules/cysts.    before you do RAI   go to www.stopthethyroidmadness.com.           i am hypo thyroid though, i take armour now and am more stable.
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