Tag Archives: hyperthyroidism

Progress! (and name meanings)

Time to break out the capital letters and exclamation points, party people, cuz I’m doin’ BETTER.

!!!!!! and !!!! and yeahyeahyeah!!!

I know, right!? You probably weren’t expecting that after my last few posts (why you hatin’). But I have, to my surprise too, turned the proverbial corner from expectant patient slash experimenter to a semi-decent success story. I’m almost to scared to be writing a “good” update in case it ends up being some sick coincidence… yet I write. because I like you guys.

So why only “semi-decent?” It’s an odd term but I use it because there are levels of success in this colitis business. Usually for me anyway. Not to many of us can go from zero to complete awesomeness. True success, in my poop dictionary, would be a return to normalcy– living virtually symptom & anxiety-free. By these standards, I’m only at the semi-decent success level. I would have loved to be a full-on success story like Mike from Colon Comrades, but whatever; beggars can’t be choosers.

So here I am, on day 136/108/80 of my whipworm journey and I can say that I’ve felt a measurable amount of relief from my worm babes. I would say around the week of the 120th day of the 1st dose I started to notice a difference.

  • I got through my last two periods with little diarrhea and zero blood.
  • Speaking of blood, I haven’t bled significantly since the middle of July! Occasionally I will have a few spots on the TP, but who cares? I know I don’t. It’s such an unreal departure from filling the bowel, I just can’t get worked up over a few spots.
  • The mornings usually are ridiculous for me. Before I even have time to open my eyes I have to sprint to the bathroom. Now, I can lay there for 30 seconds before a stomach ache develops, and depending on its severity I’ll lay there for another 30. Then I’ll have time to get up and grab a robe and slippers before I make my way down the hall (walking, not running). I’m not sure you realize how monumental this is so let me tell you: I haven’t had the time to grab slippers in 6 years. My feets are so happy.
  • I’m finding that although I still gotta-go-when-I-gotta-go, I can hold it for just a bit longer. Like if I’m in the car I might have a chance to make it down the road to the next bathroom. That’s great, man. I would take stomach aches all day long in exchange for being able to “hold it.” Thankfully in this case, I’m experiencing a little bit of having my cake poop and  eating holding it too. Not a bad way to walk around lemme tell ya.
  • I’m having to use the bathroom 3-4x a day now. Mostly in the mornings, I’ll have maybe 3 bowel movements. Usually it takes this pattern: 1st movement is formed, 2nd is loose, almost diarrhea, and 3rd is formed again. I’ve had some real good lookin’ movements in the past few weeks. Its weirdly appropriate they are called movements too, because it’s like music to my eyes. heh!
  • Prednisone you wonder? I’ve been successfully able to wean my self completely off (as of Sept. 1). So far I haven’t had any real set backs, besides feeling a few more colitis cramps throughout the day. This is also huge, since the last time I came off pred without flaring was two years ago. holla!

Oh, and my hyperthyroid condition? Peace out. I have been taking a natural supplement called Thyrotropin PMG from Standard Process since I was diagnosed a few months ago. I also increased my vegetable intake to include more that are said to decrease thyroid activity. My levels that were tested last month came back perfect. Great news. Now I know my hair loss is strictly prednisone related, so hopefully I won’t go bald any time soon.

While it seems like I have found the silver lining, the one bad thing is that I’m still fighting unnatural amounts of fatigue daily. I am exhausted all the time. If 10pm rolls around and I’m not in bed I start experiencing like, restless leg syndrome or whatever that is. It’s not pleasant. Even today, I slept for 9 hours last night and then just work up from a 3 hour nap. What is my problem? Did anyone elses’ worm fatigue last this long? Headaches, too. Lots of those happenin’. Please chime in if you have any ideas 🙂

Anyway, the other night I was talking with a friend and my husband about name meanings. “Do you think that your name shapes who you become?” There were some mixed answers and then I realized that my name, which means small bird (or heaven) in Arabic, definitely applies: “Jenna” means small bird… and I eat worms. It’s a little too perfect not to be creepy.

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Helminths Don’t Have Legs

I guess I’ll be the fourth or fifth to say it say it… this post is long overdue. It may just be because I’ve got a lot going on, but it’s more likely because I’ve spent the last several days getting over pretty traumatic happening involving my worm babes…. who aren’t so little anymore.

Let’s just jump into the story, shall we?  An IBD blog is no place for suspense.

Scene: morning dash to the bathroom. I get in there just in time. Everything seemed to be per usual so I get up to check the poo. I’ve been checkin’ poo for years now… safe to say its a solidly formed habit (like I someday hope my poop to be.) Kind, color, blood, etc. ya with me? #everydaylife.

Anyway, I look down only to see that my “poop” is moving. Squirming, actually. It takes me only a second to realize that THESE ARE MY WORMS. So I’m immediately flooded with every single emotion I’ve ever experienced at once, when I realize that these things have gotten out of the toilet and were now in a pile on my bathroom floor. Time to panic. I start picking them up with my hands (what’s a girl to do?) and throwing them back in the toilet. But as I’m doing this, they start to burrow into my hands and arms like some sort of parasite. What? I could barely rip them off me fast enough and let me tell you, these guys pack a serious punch. I felt like I was in a more interesting Twilight movie.

So I’m standing there, tears rolling down my face, not because I have several worms drawing blood from my limbs but because I’m thinking, “NOOO! Did I lose them all? Has this EVER happened before? What do I do? WHAT do I do? Am I seriously staring at a few thousand dollars in my toilet right now?? JERKS, GET BACK IN!”  Standard reaction, really.

Then I woke up.

I’m sure you’re as thankful as I am that that was only a  freakish dream and not a real-life incident. It was really quite as horrifying as dreams come. Needless to say I think I’m subconsciously pretty worried about these worms escaping or just plain not working. Does anyone else have worm dreams? My husband had a similar experience (albeit real life), when he saw some worm like thing crawling on the bathroom floor a few weeks back. He came to be and said, “I thought one of your worms had crawled out of you and was on the bathroom floor. I was really freaked out until I remembered… helminths don’t have legs.”

This is a weird therapy. We’re trying our best to develop coping mechanisms.

In other news, remember that little comment in my last post about street cred and a band-aid on my arm from a recent blood test? Well, test came back. My doctor called and let me know that my iron great, CRB is great, inflammation is not bad (rarely is, even in a flare. so confusing.) Then her voice got a little panicky.  “I also tested your thyroid levels.” Ohhhkayy.

Turns out I now have HyperthyroidismAbout 3 seconds after she said that word the junk I learned in my college Anatomy & Physiology class came rushing back to me…. No “known” cure, no “know” cause, autoimmune disease, treatment options are drugs or surgery.

Crap. Not this again.

This on top of my well established UC and Raynaud’s disease… it’s a good thing I’m already married.

I have no idea when the onset of this was. Could it be a result of the worms? While I suppose it is technically possible, I kind of doubt it. I’ve been nauseous for months, my hair has been falling out, hormones have been going crazy for at least 3 months and my throat is killing me. We’re talkin serious pain on a daily basis. I had a theory that the sore throat could be caused by cell wall deficient bacteria, since I had Strep an unethical amount of times as a kid. I had my doc check me for strep antibodies. Nope. Strep free. But I do have what I now think is an enlarged thyroid causing me pain.

The bad part (I mean the other bad part) about this is, since this is a recent diagnosis, I really can’t say what can be attributed to the worms, to colitis, or to hyperthyroid. All I can do it record what happens and guess. I suppose that’s all we can really do, it’s just slightly more complicated with me.

She told me to call and endocrinologist ASAP and then ran down the option list for treatments. A) take meds forever B) kill your thyroid with Iodine or C) surgically remove the gland.

Sounds familiar don’t it?

I gotta say I was really disappointed with her approach to this. I’ve been going to her because she favors a holistic approach, so the way she threw out a typical overly alarming MD response kinda threw me. I can’t figure these people out.

Anyway, here’s the plan. My levels are not life-threatening yet (had to do my own research to figure that one out), so I hope to handle this the same way I’ve been handling my colitis; diet, exercise, supplements. So much research to do…. This is just one more thing to figure out. If you can offer any advice as to how to treat this naturally, I’d really appreciate it. 🙂

Aside from that, I’ve experienced no relief from the worms yet.  After the second dose I was very tired, very nauseous, and the brain fog and headache came back. On day 6 & 7 of the 2nd dose (day 35, 36 of the 1st dose) I experienced several bowel movements of blood. No severe stomach pain but this is unusual for me being on the prednisone (now at 10mgs).

Today, which is day 18 of the 2nd dose (day 46 of the 1st dose) I had another bowel movement of blood, and some diarrhea. The only change I’ve noticed is that there is more mucus in the stool and I have traces of blood more frequently… well, every day in the last week. Of course, I’m getting over the flu so that could have something to do with it as well.

So, that’s that. About one more week to go before I swallow the last dose of the season. Excited? I know I am!

But more importantly… what have we learned here? Don’t get hyperthyroidism. and if you happen to see a wormish thing crawling around on your bathroom floor, chances are it’s not an escapee. after all, helminths dont have legs… just really, really sharp teeth.

Sweet Dreams!!