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Avatar universal

post treatment weight gain........low thyroid

I am now 8 weeks post treatment for HepC1b.  Did the usual pegysus and riba, with terrible sides the entire time.  My thyroid is 3.8...TSH, 8.8...T4,  23 (low) T3 uptake and 1.2....free thyroxine index.  I had trouble with weight gain during treatment, b ut the4 ddoc told me that I just must be eating too much.  The post trearment sides have been worse in some ways.  I have never weighed this much, now have I experienced such weight gain.....sometimes 4 pounds a week.  I am depressed, nails splitting, hair falling out, and tired.  The sx from the treatment are still with me.  I am still taking antidepressants.  Looking like hell was bad enough, but now I could apply for the fat lady in the circus.  Help!!!!!Does this ever end?
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150807 tn?1194955315
I dont understand i was told you lose weight with treatments....now im really lost.
Helpful - 0
179856 tn?1333547362
I understand 100% exactly how you feel.  And now my dilema is - ok what do I wear? I am NOT buying new clothes. I have quite an extensive wardrobe that's taken me years to build and I simply REFUSE to go up a size! So I'm shoving the smaller clothes into the back and wearing what I can - instead of the old days when everything fit me without even really trying things on.

Most people don't understand and say "you're so thin you're so lucky' uh no - do you know what it feels like to pack on 30 pounds in six months? Even if 20 were pre-tx pounds how in the WORLD did I gain 30 pounds?  I try to pretend it's only the extra 10 but I know I wasn't eating all THAT much to gain even the 20 back! (MY idea of regular eating is about half what normal people eat).

so i too am sick of starving. And i tell you - sugar free jello at 10 calories does NOT work when you need a snack (not for long, I KNOW my body is still craving sugar like it did during treatment).


I just don't know what to do.  I'm not going to give up my one big treat that I always refused in my LIFE to give up - my morning coffee with half n half and sugar.  It's all I've got that I can cut out that's left.

If I thought becoming intentionally bulemic would help I'd already be there. How sick does that sound? Bad. But the few calories I actually eat have to be eaten to keep that metabolism going or my body WILL think it's starving and shut down.....

I just don't understand and I'm sorry but I'm glad you understand.

It simply IS a side and we have to figure out how to fix it. Heck the doctors didn't know how to fix most of our sides without our help already right?

Then - we will both go and get our PCRs...

Deal?
Helpful - 0
214582 tn?1194026839
NY,
Boy, I understand COMPLETELY what you meant... WoW...If I had had any thoughts on that... then we could have marketed a solution...LoL.... But this thread has enlightened me immensely! YeaH, Maybe there is hope yet, & at least I feel like I have a direction to move in now... Shish!

I think I'm gonna be disappointed if this is NOT what it is at this point... but I think I can definitely say, whatever has caused this is most definitely TX related & a post TX sx.... I have NEVER endured this type of problem, & to be doing everything in the world RIGHT & still not budge the weight definitely indicates an underlying problem somewhere...

I have well over a GRAND invested in loosing this weight in the last 6 weeks alone.. & I can't AFFORD to continue at this rate, especially when I can clearly see that the programs I do does work for everyone else but me... Ugg!

When I lost my initial 10 lbs in January... my better half went on to loose 30, & I was/am more regimented than he.... Of-course I got accused of CHEATING, but it wasn't so, then we heard South Beach is known for better results on Men, vs women... sooo after at least maintaining for several months, but  still not budging... it was time to try something else to break this cycle!

Blah Blah.... So I desperately brought out the big guns with this latest.. but it ain't cheap...Which is why I haven't done my PCR... because I have spent way too much money on something I thought I could change, (my weight) or at least make a difference, & see progress... because knowing the results of my PCR isn't going to do anything either way for me right now... Even "IF" I where to discover relapse (which I do NOT think is the case).. there wouldn't be a darn thing I could do about that right now... so why bother ... I thought first priority of loosing the weight made more sense!

CALIFIA...
WoW... It is so GREAT To see you here... & your post is as enlightening as Ever..... Boy have I ever missed you...

Heck I am so desperate, I'm almost considering going on a strict liquid diet at this point... who would have ever thought it cost so much to starve, or eat ONLY Healthy...LoL

If I hadn't been doing what I have been doing since January... I'd be well over 200 lbs by now... & it is a struggle just to maintain... much less loose any more... this is Ridiculous!

I refuse to Ever Just give in & Accept this weight... No Way... I am NOT a Big Person (even mentally)... It's NOT Going to happen... I'll intentionally develop Bulimia before I cave... I SWEAR! Ugg!
;)
Helpful - 0
Avatar universal
Stang--You might know this already, but Hashimoto's is dx'd when you're showing antibodies to the thyroid.  It's just the autoimmune variant of thyroid disease.  Anyway, keep lobbying for yourself and lots of luck.

NY--Air kisses to you, too.  Yes, I know exactly what you mean and I don't care how middle aged we've gotten, the state of apathy is a drag, drag, drag.  The hard thing is getting as aggressive as we need to be with doctors.  Why am I afraid to be looked at as if I were some hypochondriac?   I was much braver on tx, because the whole experience was so, er, vivid that it was 120% clear that I knew and they didn't have the slightest pretense of a clue...    Anyway, you have a right to be slinky again and feeling as good as you possibly can.  All best to you.
Helpful - 0
Avatar universal
I was reading your post and it really triggered food for thought. I questioned the hashimotos at one time due to looking like the picture in my A&P book. It went away(the look) but still having issues with my thyroid. I did have the t4 test done months ago and it was normal then:however, I haven't had one done recently and having issues again with regulating the thyroid. I have had normal lfts always even when my vl was really high. Thanks for the information.

nygirl, how are you doing, I am really concerned with the thyroid issue. I am wondering about the thyroid storm? Can you give me some more information? I went to get my hair trimmed last week and I thought of you. My hair used to be so thick and curly, after the trim I cried. My hair is growing in straight and very thin...I know the thyroid can effect hair growth too.
best wishes to all :) shelly
Helpful - 0
Avatar universal
Bill, wonderful to see you again.  True, I may not have been around, but in spirit I've never really left this place.  Guess you could say I feel forever bonded and forever changed by this experience.   Can't believe that it'll be a whole two years in mid-September!   Happy to report that I truly feel a difference in my liver, which is to say I no longer FEEL my liver.  What a huge relief.  The return to some kind of normalcy has been a slow and gradual process, but I've definitely returned.  So, let's see.  Resistance to flus could be a helluva lot better than it has been, so general immunity has been a problem, and lingering peripheral neuropathy in my feet seems to be the last little souvenir of treatment. (Forgot to mention in my above post that along with carpal and tendonitis there's a proven connection between peripheral neuropathy and hypothyroidism.  Aha! That just might explain a thing or two.)   Guess I tend to subscribe to DD's cautionary approach post-SVR.  Remission feels miraculous but fragile, and I don't want to do anything that would disturb the delicate balance.  So if anything I've gone even more holistic.  Would love to hear from you when you come down this way.  Fingers and toes crossed for you...
Helpful - 0
87972 tn?1322661239
Califia;

Thanks for the update. I think I
Helpful - 0
179856 tn?1333547362
Hey first off how great to see you! I'm SO sorry that you too have been living in the land of thyroid dysfunction - but I am SO GLAD that you have been doing some serious looking in to it because I REALLY believe that THIS is a major cause of the post side weight issues (I mean please I've been able to maintain a perfect weight - to the POUND - before I went on treatment and now...NOTHING works) and perhaps also the spinal issues (my headaches are coming back...spinal area muscles that stretch out on my back - all of a sudden acting up worse than in YEARS) etc.


I just don't know enough about it all.  You are a great example of how little I really know.

I was concerned my T4 level was too high (I can't remember now but it was on the high side of "normal") which is I guess why he put me on the Synth.  I know my T3s were perfectly in the mid norm area but I wanted him to work on lowering them too.  It is the ONLY thing that I know that is really different with me now as compared to then.

I HATE being tired. I HATE wanting to go home at night after work and just lay on my bed and watch tv. Heck...I had money on me last night and thought of going to buy some clothes for summer but then was like nah...I'd rather just lay down.  I've NEVER DONE THAT IN MY LIFE!!!!!!!

Something is WRONG.

Big time.

I am going to copy all the things you put down and call and make an endo appointment today.  Get him to call in the bloodwork asap.

Since you just let me know I"m not a hypochondriac in addition to being a hypothyroidite (is there such a word?) ;)  NOW I am totally ready to start to do battle on this one!

THANK YOU CALFIA A PERFECT TIME FOR YOU TO DECIDE TO COME IN AND SAY HELLO!!!!!!!  I THANK YOU SO MUCH!

You see - you are needed around here!!!!  :)
Helpful - 0
Avatar universal
Just got to throw in my two cents here, as someone who developed Hashimoto's (autoimmune hypothyroidism) while on interferon monotherapy in 1990 and has been struggling with these issues ever since.  Found myself extremely hypothyroid all through 60 weeks of tx this time around, even while taking Syntroid at the highest possible dosage.   It took a full year post-tx for my thyroid to normalize, which it did for a while.   Long enough to enjoy good energy and a very nice weight, but as of three months ago the fatigue is back--which I always ascribed to HCV--and with it cold extremities, ten pound weight gain, etc. etc.  I've been lobbying for a dosage increase with my HMO doc, but to no avail.  He believes in the old TSH "normal" range of .5 to 5.5, not the AACE recommended normal range of .3 to 3.   Never mind the fact that I definitely feel my best with a TSH of 1.0.   At 4.0, the old familiar symptoms are back with a vengeance.

To make a long story short, I've been doing a ton of reading about thyroid again, ordered books by Drs. Richard & Karilee Shames and Stephen Langer, and have been impressed by accounts of thryoid patients who swear that not only did they feel a whole lot better when replacing T3 in addition to T4 (which is what Synthroid is, T4 only), but that replacing the synthetic version with a bioidentical like Armour was a night and day improvement.

Have to say that I stupidly allowed my endo to talk me into dropping Cytomel (T3) which I'd been taking in addition to Synthroid, right before I started  tx, cause I figured it would be a good thing to have one less pill to worry about.  In retrospect, I'm pretty sture my TSH levels bounced around a heckuva lot less when replacing both T4 and T3.

So I have a consult scheduled with Langer, who pioneered alternative approaches to thyroid management.  A desperate move, but I am fed up with the roller coaster ride.  Armour Thyroid, which he prescribes, apparently includes the full range of thyroid hormones;  T1, T2, T3 and T4.  This matters because the Synthroid we've been taking requires perfect liver function to convert the T4 to the other hormones.  Some people have trouble with the conversion process.  Could those people be ourselves?

And did you all know that hypothyroidism can cause carpal tunnel and all kinds of joint and tendon problems?   That might explain why some of us, even after achieving SVR, continue to experience symptoms we tend to associate with  chronic hep.   Google thyroid and tendonitis and see what comes up.

Btw, I think Mary Shomon's website, "about.thyroid.com"  is a pretty terrific resource, too.

Helpful - 0
Avatar universal
I am sorry to hear this common thread of weight gain and thyroid problems. I am still txing but only 7 left of 72. My thyroid has really taken a hit with tx. I have always been on the average weight size most of the years. I lost 30 lbs or so before tx and then have fluctuated with the thyroid. I was initially hypo at tsh 78 or so then stabled out after medication but wouldn't you know a few weeks ago went hyper and was at 0.01 tsh..adjusted meds again,lost 10 lbs and keeping fingers crossed. I am a good weight but fear gaining alot back after tx . hang in there, Have your blood sugar checked as well,a fasting blood sugar. best wishes :)shelly
Helpful - 0
217229 tn?1192762404
You guys - thanks - I stopped taking the synthroid - maybe that is what is wrong.

OMG - I never thought about that as possibly being the massive issues - or one of the main culprits.

Thanks.

Meki
Helpful - 0
214582 tn?1194026839
PrettyPoison,
Thanks for the info... "About dot com"  has LOTS Of info... Humm, I am discovering I possibly have more signs than I thought... who would of THUNK split nails was even a sign.. geez Heck I am actually hoping this IS what they find so I can at least fix this!


Nikki,
Now I'm not feeling like the Lone Ranger either... Glad you posted about this! My weight gain has been like your.. came on like a freight train, & was sometimes 4 lbs a week... had I not of started a regimented diet when I did, I'd probably qualify for lap bann surgery by now...Shish.. I did manage to knock 10 lbs of it off in January & at least maintain it... but it's a struggle & I have still have 35 or 40 lbs to go.. Thank-God I am big boned, so I carry it well... but I am still devastated!


NY,
I have been doing that too.. "Journaling Every Morsel of Food that goes in my mouth".. there is just no way I shouldn't be loosing weight... I can't even begin to tell you the money & effort I have invested already into trying to loose weight (Nutrisystem would be much cheaper at this point)....

There are some gals on-line that are doing this b12 coctail, & restricted calorie  regime with me & bypassed me bigtime already ... it's real discouraging to see them 12 lbs down & I haven't budged at all...

I will starting even yet a more drastic approach this week for 2 weeks ..  then If I still don't see any results I'll even try nutrisystem next...

This vicious cycle has GOT to quit... I can't afford to keep this up much longer...
My better half said I should be going to the Doc before the end of this month.. I can't wait!
Ugg!
Helpful - 0
179856 tn?1333547362
Well welcome to my club. First my thyroid was WAY hyper than it zonked around the other way.  Even on Synthroid (which the doctor upped the dosage on last month) I know offically weight 13 pounds more than I EVER have in my life.

I've weighed the exact same weight since I was in my 20s.  Never going that far either way from the number.

When I went to the endo to find out what the h*ll was up he said even if I was sitting in bed eating an entire chocolate cake every night I just couldn't be gainning this much weight.

So he upped my dose and I"ve levelled out (but still gainned 2 pounds since).  I honestly don't nkow what to do either.

I just decided to journal every morsel of food that goes into my mouth during the day and see if maybe I'm missing something.

IT sucks. I hate it. I've been perpetually thin all of my life.  Now.........I am going to start this new "journal" and see what I can find.

This to me was the worst thing that acould have happened. It sounds dreadful but after a lifetime of giving up cheeseburgers and shakes and all those wonderful things to be thin...now...well it's just not fair.

I'm sorry it happened to you.  Looks like it's Lean Cuisine for me from now on - and maybe half portions at that. I have to beat this somehow.  so Know what you mean.

IT's dreadful.  And it's not you.

Are you seeing an Endocronologist?
Helpful - 0
179856 tn?1333547362
Boy somehow I'm sorry - but I feel better knowing you, a "real" old timer compared to me are going through what I am because that means it's not ME you know?  It's just nice, once again, to have someone in the club who gets it - even though it totally sucks for you and I wish it wasn't happening to you.

I hope that made sense but I"m sure you know what I mean!

I don't understand it.  I've NEVER gainned weight not in my entire life (well for 20 years anyway since I had my kids and stil that is different) and now...every time I get on the scale it's going UP and it just shouldn't be.

I just had my sugar free jello. MMMMM. (Bluck - I want a cup of coffee with sugar and half and half LOL).  

I swear - IF my tsh and numbers are now almost in the HYPER zone again (thanks to Doc upping the synthroid) but also keepoing a very very close eye on me - WHY am I not losing weight like I did when I was on treatment and hyper before?

It makes NO sense in this universe.

I just don't understand why a human can be having such low TSH and still gainning weight.  It should NOT be humanly possible - and honestly I don't know how long I want to keep taking the higher dose.  Most likely I'll give myself a thyroid storm and it won't matter but...I'm going to keep TRYING - no other choice.

Do you have ANY thoughts?

Maybe between the two of us we can brainstorm some brilliant thing and figure it out and make a couple million dollars?  Then..I won't mind gainning so much cause all the "yes" people around me will tell me I look FAB just like they do Britney ;)
Deb
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87972 tn?1322661239
I just wanted to jump in here to say hi! I thought you might have fallen off the face of the earth; it
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Avatar universal
Thank you all.  I do not feel like the Lone Ranger.  My hep is out of the picture, so I will find an endocrinologist myself.  I have no baseline, because hep doc refused to do it.  Once again.....THANKS!  This **** hase a life of its own.    Nikki
Helpful - 0
Avatar universal
One thing I did to figure out about my thyroid was to check my temperature in the morning before I got up.  I justed popped a digital thermometer in my mouth and my temps were in the 96's every morning.  I called my Nurse Practitioner for my HepC doctor and asked her to give me a slip to get my blood drawn.  She tested the TSH and FreeT4 and then I was on my way to recovery.  My TSH when checked while I was on treatment was 1.97 which is okay.  Please get yourself checked if you think it is your thyroid,  Medication can make a world of difference.  About.com has got some good information about the thyroid.  I hope you feel better soon - recovery from treatment can be rough!  
Helpful - 0
214582 tn?1194026839
Awe, Sorry to hear this... but I too can relate!
I am a little more than a year out & experiencing the same problem,

See my post from yesterday:
http://www.medhelp.org/forums/hepatitis/messages/46767.html

I haven't been tested yet, so I'll know more soon.. but this sure isn't much fun is it!

Hopefully they can give you some medication to accommodate

Hang in there
:)
Helpful - 0
Avatar universal
I just read  your post and you could be me!  I was post treatment  just not feeling right, fatigued, and gaining weight and I finally figured out my thyroid wasn't right.  By the time I got it tested my TSH was 62.85!  I have been on synthroid for about 8 weeks now and feel so much better.  Do they have you on thyroid medicine?  If  so, you will start feeling better when the meds start working.  Hang in there, I feel your pain!
Helpful - 0
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