Author Topic: Hypothyroid and hep c (Read 19081 times)

loveispatient · « **on:** September 08, 2015, 06:00:27 pm »

Hi Everyone,

I had a hysterectomy in 2012 and while I felt tired from the anemia before the hysterectomy, I just assumed it was bc I was anemic and hypothyroid. My theory is that I had been infected for awhile but it was when my blood levels dropped so low and they didn't transfuse or try to build up my iron, my body just couldn't fight it off anymore.

I kept telling every doc I saw about the stomach pains, the vomiting, nausea, headaches, anxiety and depression that all worsened until I found out I was diagnosed that I hadn't felt right since the operation.

What really makes me angry is that about 8 mths ago my abusive ex-husband got word to me that he had hep c and I relayed that to my doctor. She had tested me for everything else, blamed it all on menopause, and never tested me.

It was only after I was referred to a gastro and found that from last year when I had one ulcer I now had 6, that I was tested and waited for seemed like forever waiting on genotyping so I would know what treatment I would have. My ulcers are all gone and I have been lucky enough to get approval first time around in about a week. I start tx very soon, as soon as it arrives.

Now that I have all that out of the way, my question concerns the effects of tx and hypothyroidism. Has anyone else experienced any concerns or problems with the treatment and hypo? Thanks in advance and I pray that this dreadful disease is eliminated very soon for everyone. Hugs and blessings!!!!

KimInTheForest · « **Reply #1 on:** September 08, 2015, 08:43:44 pm »

Hi Loveispatient. Welcome to the forums and to the treatment journey.

I don't know the answer to your hypothyroid question. But congrats on getting your treatment approved so quickly! Good luck with treatment, and drink plenty of water to help with side effects.

Make sure you are not anemic going in to treatment because ribavirin will only make that worse. I wish in retrospect that I had done something to boost my low hemoglobin and red blood cells before starting treatment. Now I am taking iron and B-12, post-tx. And that is helping. But I was low going in. Could have used it then.

best,
kim

loveispatient · « **Reply #2 on:** September 10, 2015, 08:34:32 pm »

Thanks for your reply, Kim. I am actually amazed that it all happened so quickly and with no arguments for the treatments. I have been very blessed by the fact I have met my max out of pocket expenses so I don't even have a co-pay.

Today is especially good as its my anniversary and the day I received my first tx box. A little nervous going into tomorrow, as I am so sensitive to meds and praying it will be easy.

I know I have read it but can't remember which drug does best when taken with something containing fat. Do you know?

I am talking Solvadi/Riba and my iron is ok for now and I also take B12 injections at home, so I am hoping that will help.

Any tips going into tomorrow, such as dosing times, etc. would be especially helpful.

Thanks again. Blessings.

KimInTheForest · « **Reply #3 on:** September 10, 2015, 09:23:21 pm »

Hi Loveispatient. Ribavirin is the drug that is supposed to be better absorbed with fat. So some people go out of their way to eat fat when they take their riba. Others here on these forums say the fat any of us gets in a normal diet is sufficient to do the job, and that deliberately increasing one's fat intake may not be a good idea.

As for time of day - I found the riba would give me insomnia if I took my 2nd dose later than 5 pm.

And I found the Harvoni had a powerful energizing and elevating effect on me, so I took it in the morning at 9 am, with my first riba, to have the benefit of that energy for most of the day. I don't know if Sovaldi has an energizing effect. I have not heard people mention that. But Harvoni is Sovaldi+ledipasvir, so maybe.

best of luck! How exciting that you are starting!

kim

loveispatient · « **Reply #4 on:** September 14, 2015, 06:06:26 pm »

Hi Kim,

I noticed on one of your other posts to someone else (if I am not mistaken) that you were slim, weighing about 102 bf tx? If this is so, how did you maintain your weight during treatment and did you have a hard time gaining it back afterwards?

I was 107 when I started 4 days ago but I struggle to keep weight on despite being hypothyroid, so I am concerned that I do not have an appetite. Some foods I normally love now repulse me and my comfort food is mashed potatoes but who can eat that all the time?

Also, my dose of Riba is 2+3 a day but I read on their website that based on weight I should only be taking 800 mg a day. What do you think? So far the sides aren't horrible but for some fatigue and nausea but I highly suspect I will get anemic soon since I already had a problem with my red blood cells dying off prematurely, hence iron pills and B12 injections.

I don't want to take more than needed but also don't want to take it if I don't. Waiting on a nurse to call me back but thought I would ask.

So glad you have cleared and October is just around the corner for you.

KimInTheForest · « **Reply #5 on:** September 14, 2015, 07:45:46 pm »

Hi Loveispatient. I was 127 lbs at start of treatment (basically skinny at 5'7"). And I lost 10 lbs during treatment. Finding stuff I could eat during treatment was a daily problem. I didn't just lose weight, I got malnourished because I couldn't eat my normal healthy foods. They usually would not go down - brown rice, lentils, dark leafy greens, salads, carrots. Also fruit, which is normally my mainstay, became "too sweet" for me. My sensitivity to sweet and salty increased greatly during tx. This also made it hard for me to eat cheese, which I normally eat a lot of. Toasted bagels and white rice became daily items - things I wouldn't normally have in my house.

Smoothies are always good when it is difficult to eat. Mine became very simple in the end because the carrot and kale leaf I normally put in were not working out too well. So I just used: banana, 1 tbs ground flax seed, yogurt, almond milk and unsweetened organic cranberry juice to take down the sweetness of the banana. I think if I had been more creative about making simple soups, that would have helped. (Paradoxically, I became ravenous for meat during treatment starting around Week 4, especially pork chops and chicken drumsticks. Was eating that daily with white rice, sometimes potatoes. I had been vegetarian before treatment.)

Some people use protein/nutrient drinks and powders. I could never find one that had ingredients I found acceptable - even in health food stores.

Basically, you have to do whatever it takes to keep something going in you each day - even if it something you don't consider "healthy". Better to eat something than nothing over 12 weeks of appetite suppression.

As for the ribavirin dosage, I wondered the same thing - whether I was actually being overdosed on ribavirin when I was below 120 lbs but still on 5 a day (1000 mg) and my hemoglobin was below 100 g/L (or 10 g/dL). Like you, I could see that when riba dosage was more closely weight-based 'in old days', I would have just had 800 mg/day from the beginning. And I was getting pretty anemic. I asked my treatment team about this several times. They said no to dose reduction, that it wasn't necessary in this situation.

As for my post-tx experience, I have been VERY sick during my 7 weeks post-tx. Have gone to my GP twice. Will be going again. I have been housebound and even bedridden many days (including today) with fever and woozy dizzy groggy fatigue. Not the fatigue during treatment, which just affected my ability to climb stairs due to low hemoglobin, but didn't stop me from going about my normal life.

Also I have not been able to eat much durng this post-tx malaise, so am still fighting that battle and have probably lost even more weight. No pathogen has been identified yet. It is no "recognizable" illness like flu. I think it is an autoimmune issue arising from treatment itself. Not necessarily caused by the drugs but perhaps caused by the rapid elimination of HCV, which had been my immune system's round-the-clock job for last 45 years. Then poof - unemployed… but still ready to go to work. Only thing left to attack and defend against is body's own tissues. A number of forum members are reporting similar problems post treatment.

This too shall pass.

kim

loveispatient · « **Reply #6 on:** October 12, 2015, 02:37:49 pm »

Hi KimNtheForest or any other moderator who can help, or anyone else who can chime in. I spoke with my Gastro last week concerning the side effects of ribavarin and soladavi. The joint pain and increasing anxiety, insomnia, etc. He doesn't want to prescribe pain meds and wants me to go the pain clinic. I have an appointment scheduled for Friday with a rheumatologist for the pain (I am also hypothyroid). Today I went back to the Psychiatrist who told me that I have the chance of a lifetime for a cure, not to complain to my GI about side effects as they are all in my mind and I am just a nervous person. While I was in his office, my bp was 170/100 and a very weak pulse. What should I do? I don't want to stop treatment as I am 5 1/2 weeks into 12 week treatment. My blood work was done last week for anemia and it was getting lower but no low enough to do anything about. What can anyone recommend? Should I reduce to 800 mgs of Riba from 1000 or is it possible to stop temporarily and start back? Any insight would be great, especially from Luncinda or anyone with experience in this. Thanks so much Hugs and Blessing

byebyeC · « **Reply #7 on:** October 12, 2015, 03:06:13 pm »

Wow Loveispatient...

Your psychiatrist is way out of their own wheelhouse telling you to not report side effects to your gp! WAY WAY out of bounds!

Additionally, and I'm speaking from personal experience with Ribavirin, there can be extreme psychological side effects that your doctor MUST help with.

You need to talk to your GP before changing your dose. But, you may need help with the additional anxiety and insomnia.

Philadephia had to be backed off of her riba, but it was with her Dr. choosing that for her.

Please seek a different psychologist. That is just bad medicine...

God bless,

Marianne

KimInTheForest · « **Reply #8 on:** October 12, 2015, 04:54:07 pm »

Quote from: loveispatient on October 12, 2015, 02:37:49 pm

Hi KimNtheForest or any other moderator who can help, or anyone else who can chime in. I spoke with my Gastro last week concerning the side effects of ribavarin and soladavi. The joint pain and increasing anxiety, insomnia, etc. He doesn't want to prescribe pain meds and wants me to go the pain clinic. I have an appointment scheduled for Friday with a rheumatologist for the pain (I am also hypothyroid). Today I went back to the Psychiatrist who told me that I have the chance of a lifetime for a cure, not to complain to my GI about side effects as they are all in my mind and I am just a nervous person. While I was in his office, my bp was 170/100 and a very weak pulse. What should I do? I don't want to stop treatment as I am 5 1/2 weeks into 12 week treatment. My blood work was done last week for anemia and it was getting lower but no low enough to do anything about. What can anyone recommend? Should I reduce to 800 mgs of Riba from 1000 or is it possible to stop temporarily and start back? Any insight would be great, especially from Luncinda or anyone with experience in this. Thanks so much Hugs and Blessing

Hi LoveIspatient. I'm not a moderator here, btw - just a member like you.

I would be no good at all as a moderator. But the moderators here are great! I think there are 5 of them. They all have "'Global Moderator" beneath their name and avatar.

I agree with Marianne - your psychiatrist was way out of line telling you not to report side effect, and that those effects are "all in your mind." That's totally unacceptable, and that psychiatrist is clearly completely ignorant about the well-documented emotional and psychiatric side effects that ribavirin produces in many people. I was having frequent surges of "riba rage" at the end of my 12 weeks, and a lot of emotional stuff in general. Others here have mentioned profound anxiety issues coming up. Some people have had to get prescriptions to anti-anxiety meds to get through ribavirin.

So if your psychiatrist is ignorant of all this, and demeaning to you in the process, probably time to find a better and more knowledgable psychiatrist. But really, your GP or GI could also probably prescribe anti-anxiety meds if that is the route you want to go.

I believe Lucinda said she got a prescription to atarax which helped with the itching, insomnia, and anxiety. So a multi-purpose pill/helper through the worst of the ribavirin.

Also the riba-anemia will affect your mood and state of mind, as will the appetite suppression that I believe you and I both suffered on ribavirin. I get into strange emotional states anytime I cannot eat properly, and I had 12 weeks of serious malnourishment during treatment and another 4-6 weeks post-tx because of my post-tx aftermath where I was very ill and could not eat properly.

I would try to NOT dose-reduce the ribavirin unless your lab results warrant it - i.e., if your hemoglobin or platelets are dangerously low or your bilirubin dangerously high. You really want everything going for you.

But as far as I can tell (and I asked this question here on the forums a few months ago), everyone who does have to dose-reduce their ribavirin seems to still get cured. It's a tough call. You want to get cured, but you don't want to wreck yourself in the process.

good luck, and please keep us posted!
kim

loveispatient · « **Reply #9 on:** October 13, 2015, 01:47:10 am »

Wow, Kim, Lucinda, Bye Bye C and anyone else who responded. I knew I wasn't crazy. My gastro seems to think I should quit the ribavrain but I went to the quickly and I was already on an antidepressant as well as Klonopin 1mg 3xdaily and Ambien and night and a lose does of Prozac but felt if I could the anxiety under control (i have always had extreme anxiety being abuse sexually as a child byt step brothers, my mom said she didn't want me and my dad, while he loved me fought his own demons as he was an alcoholic.

I agree I need to find another psych but I needed the antidepressants as well as the anxiety meds bf treatment and even more so now. Doctors can be so arrogant and I hate feeling like I often know more than they do bout he treatments, side effects, recommended dosage, danger signs, etc.

I have an appointment tomorrow with another GI in the same office and if the are unwilling to work with me with the sides so that I do not have to stop treatment then I will be going to another within a week or so. I am also looking for an internal medical specialist or a GP for my thyroid and other routine things since she didn't test me when I told her I had been exposed and then blew it off and never said I'm sorry, my bad, nothing.

I feel much better that I have my anxiety and Prozac meds.increased and haven't take ribavarin today. I will better get some more blood work to see where a I will keep you posted about he only option I see: to reduce the Ribavarin temporally and possibly restart or later or just reduce from 1000mg to 800 mg.

Thanks so much for everyone support and willingness to respond so quickly. I appreciate each and everyone one of you.

Hug and blessings, Christine or loveispatient

KimInTheForest · « **Reply #10 on:** October 13, 2015, 02:01:47 am »

Hi Christine. As far as I know, Sovaldi does not work without ribavirin. No one is cured by Sovaldi alone. So if I were you, I would consider dose-reducing the riba (if you feel that is necessary) before I would consider stopping the riba and later restarting. Just my 2 cents. Good luck!

kim

loveispatient · « **Reply #11 on:** October 13, 2015, 06:43:20 am »

That was my thinking too, Kim. I know Solvadi is useless without Riba but I think I read if you complete 60% of the riba, you can still reach svr.

Another thing I thought was screwy was the the doc doesn't have me scheduled to come back in until Dec for regular blood work but I thought you were suppose to be tested more often to find out if there is a reason to continue treatment?

Hugs and prayers.

byebyeC · « **Reply #12 on:** October 13, 2015, 12:21:26 pm »

Just an add on here...

When the riba rage and anxiety hit me, it took one call from my gp to my specialist to decide this was med caused. They gave me a double the starting dose of prozac and reg dose of ativan. Do whatever you can to stay the course with your anti hep c meds. Hopefully your specialist will just script for what you need to get through tx.

God bless and good luck
Marianne

KimInTheForest · « **Reply #13 on:** October 13, 2015, 01:16:26 pm »

Quote from: loveispatient on October 13, 2015, 06:43:20 am

Another thing I thought was screwy was the the doc doesn't have me scheduled to come back in until Dec for regular blood work but I thought you were suppose to be tested more often to find out if there is a reason to continue treatment?

I think when ribavirin is involved it is important to have bloodwork every 4 weeks, at least have the CBC (Complete Blood Count) done, to monitor the anemia. Any doctor including your GP could requisition that bloodwork.

kim

KimInTheForest · « **Reply #14 on:** October 13, 2015, 02:04:23 pm »

Quote from: loveispatient on October 13, 2015, 06:43:20 am

That was my thinking too, Kim. I know Solvadi is useless without Riba but I think I read if you complete 60% of the riba, you can still reach svr.

I have read about the 80-80 rule: taking at least 80% of the starting dose of ribavirin for at least 80% of the planned duration of treatment won't affect your outcome.

best,
kim

willie g · « **Reply #15 on:** October 13, 2015, 02:45:46 pm »

Hey loveispatient, dam shrinks jobs are to make us feel better,this one sounds like a PENCILNECk, you would think your gp or hep Dr. Would be glad to help you with your pain, sleeping etc. As you have read many are prescribed something during TREATMENT and don't be ashamed to not take it. DEPPRESSION,PAIN in my lifee are unacceptable if their is a better means of recovery of any illness that causes such things especially hep c. I've known people to quit TREATMENT due to side effects that were not dealt with or helped with so yes you take these lady's advice and see your Dr. ,get something, but. Don't play Dr in regards to dosage etc. And yes Lucinda is very good and did take some meds which helped and she has two books out that I highly recommend ( well priced) which I have read and answer so Many of the ? We ask and its a great inspiring read,which is just what we all need,, to be inspired not talked down too. " Just WILLIE g" GatorFalls

Hep Forum Moderators · « **Reply #16 on:** November 20, 2015, 09:20:54 am »

Robert Gish, MD of the medical consulting firm Robert G. Gish Consultants LLC replied via Twitter....

lporterrn · « **Reply #17 on:** November 20, 2015, 12:00:26 pm »

Dear LoveIsPatient (great name

,
I wish the Forum had one of those things like facebook has, where if your name is used, you get notified so you know to respond. I am so sorry this slipped through the crack. Just so you and everyone knows, always feel free to PM me with a link to the thread and I will respond.

So much time has passed since you posted this - I am wondering how you are doing. I want to affirm your side effect experience and what you did about it. I am sad about your experience with your shrink. Fortunately they are not all like that - I work with some who use literature I've written. Let me know if that would help with your doc.

Rather than jump in and respond more to this, I thought I'd see what is going on now. I'll check this again, so no need to PM me unless it is on another thread.

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Author Topic: Hypothyroid and hep c (Read 19081 times)