A possible explanation

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Sarita
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   Posted 2/17/2007 8:51 PM (GMT -7)   
Drumroll please!
 
In the past few weeks I've had a bunch of very intrusive symptoms beyond the usual rampaging diarrhea I'm used to; rapid, pounding pulse, an additional 8-pound weight loss, a slight tremor in the hands, and just an overall feeling of malaise.  And, of course, this was all accompanied by 10-20 bathroom trips a day (but what's so exciting about that?).  I saw the doctor two days ago and she did some simple bloodwork and I got a call back from her today.  She said my thyroid has gone completely berserk; I'm extremely hyperthyroid, and she thinks I have Grave's Disease.  I was like, ***!? 
 
All my previous thyroid tests have been normal, so it doesn't necessarily explain my gut issues entirely, but evidently this is an autoimmune disease that will come on in the mid-20's and is the most common cause of hyperthyroidism.  It's not for sure that this is what is causing the overactivity of my thyroid in particular, but she said my TSH (thyroid stimulating hormone) was so low that Grave's is the most likely explanation.  A regular TSH should be between 0.2 and 3.0; mine was like 0.001 or something ridiculous like that.
 
Hyperthyroidism symptoms include rapid heart beat, weight loss, dizziness, diarrhea, shakiness, etc.  Pretty much I'm a textbook case, which is hysterical, considering the runaround I've gone through in the past two years.  The lab is running more specific tests now and I should know something certain soon.  I can't believe there might be a logical explanation for what has been going on.
 
 
 
 

7Lil
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   Posted 2/17/2007 9:20 PM (GMT -7)   
Sarita!  OMG!  I can't believe it... Could this be what has been your problem all along?  You think?  I hope so.  Does Graves run in your family?  How were your T3 levels?  Sorry so many questions, but I have more.  tongue   Isn't Graves treated with a pill or would you need surgery?  I think I remember hearing that some sort of iodine can be used as treatment too.  I don't know but I hope you can get this under control soon.  PLEASE keep us posted!!  *I'll shoot you a message soon.*

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Sarita
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   Posted 2/17/2007 10:32 PM (GMT -7)   

I don't mind questions, girl!  :-) Maybe this will help someone else at some point.  1) I don't think this has been causing my diarrhea this whole time, since I've had thyroid tests before to check for this exact thing and they were always normal, but I do think it could be why I'm worse after having been better for a while.  2) There's no Grave's disease in my family at all, although my paternal grandfather had hypothyroidism and took Synthroid his whole adult life.  3) I could be treated with radioactive iodine, but would probably need to take Synthroid the rest of my life because most people end up with not enough thyroid activity after the treatment.  I could do surgery, but there's risks with that, and would also need to take Synthroid forever.  I'd rather avoid taking medicine for the rest of my life if at all possible.  The other option is taking some anti-thyroid medication for a few months, which is probably what I would try first.  I'm still rather uneducated though, so who knows. 

 


Canyonbabe711
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   Posted 2/17/2007 11:56 PM (GMT -7)   
Just make sure they repeat the test and do the whole thyroid panel, not just the TSH. It is not always accurate and since this never showed up before it could be an error. I had a TSH once of 98.2 and everyone was a basket case. Had it retaken a week later and it was 11.4. I am hypothyroid and do take meds which are not always easy to figure out but my T3 and T4 are normal so if I can get to 7 to 9 for TSH we are happy. Constipation is a sign of low thyroid, just don't know if it works the reverse. Hopefully this will be the answer. It could be worse.

Keriamon
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   Posted 2/19/2007 1:10 PM (GMT -7)   
Maybe your thyroid is like my gall bladder--works some of the time, some of the time it doesn't. Took 3 hida scans to find my bad gall bladder, despite having the exact same symptoms for 5 years. Never can tell with those tests.

My mother's sister has Grave's disease. I think she's also been diagnosed with Crohn's, so it would be hard to figure out what's causing her bowel problems.

It's obviously not going to be easy to treat this, but if it is the underlying cause behind your erratic bowel movements, at least you do have SOME hope of treatment, which is always better than none.

Sarita
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   Posted 2/20/2007 9:27 PM (GMT -7)   
Well, the thyroid panel came back today.  My thyroglobulin and thyroid peroxidase antibodies are about six times higher than normal, my T4 is way above normal, and my TSH is again undetectable.  Put all those things together and you have a classic case of hyperthyroidism, according to what I've read. 

I got a quick referral to an endocrinologist and my PCP even arranged a thyroid ultrasound and radioactive iodine uptake scan, which requires three visits total and being radioactive for a day, but at least will get me out of work (always a silver lining!  Or maybe this lining will be a glowing, fluorescent green...).  This is all scheduled for this Thusday and Friday.
 
They gave me a beta-blocker (usually used to treat high blood pressure, but also arrhythmias and tachycardia) to help my heart rate decrease and it is helping enormously. 
 
The moral of my story: has everyone had their thyroid checked?  Jeez louise, I swear, it's my new mission to make sure everyone with bowel issues gets their freakin' TSH levels reviewed.
 
 
 
 

Canyonbabe711
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   Posted 2/20/2007 11:36 PM (GMT -7)   
It is a good mission to be on. Sometimes I get frustrated cause my Doctor seems to have Thyroid on the brain. He is a pulmonologist/internist and it is often the cause of many obscure things. He has mentioned intestinal problems as well as shortness of breath, general feeling of malaise, something not being right, etc. Good luck on your tests. Maybe you will want to be an Endocrinologist. I think it is a very interesting field.

Sarita
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   Posted 2/21/2007 2:58 AM (GMT -7)   

Canyon,

It is an interesting field.  Then again, they all are.  Gastroenterology, endocrinology, pulmonology, cardiology...the thing is, too many physicians think they are not interrelated.  They are...there's just some link missing.  Maybe many links.

I pledge to find out at least some of the bizarreness that we endure, whatever specialty I go into.  Sometimes I just think there's no good explanation whatsoever...but we can at least treat people as people, not as independent illnesses.


Keriamon
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   Posted 2/21/2007 9:06 AM (GMT -7)   
Sounds like you need to be a Chinese doctor. I was reading an article on Slate Magazine from "The Medical Tourist" and she ended up going to China because of severe, untreatable pain in her shoulder and the Chinese doctors all told her that part of her problem was in her back, a slight heart arithmyia and all these other problems she'd been having in the rest of her body. Just by examining her a little bit, they told her all the problems she was having, in addition to the shoulder pain. She ended up getting some acupressure, acupuncture, and herbal treatments that made it some better, although she finally got relief from an American doctor who has this new treatment for joint and muscle pain by tracing it to the back and using injections of something-another into the back muscles to get them to unlock. In both cases, she was treated in the back, not in the shoulder where her pain was. So problems can definitely be interrelated, and where the pain is isn't necessarily where the problem is.

Canyonbabe711
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   Posted 2/21/2007 8:41 PM (GMT -7)   
I am fortuanate to have a physician who is a pulmonologist who is interested in everything but it must be hard to keep up with it all. I don't think I would want to be a pulmonologist cause the patients seldom get well. You can keep them stable to a degree but unfortunately most lung problems are not curable. That would be very hard to me to handle. I think it may be worse than oncology cause people can be cured from cancer. With lung deterioration except for a lung transplant there is no cure and even that is just life sustaining for a few years.

CathyA
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   Posted 2/22/2007 8:57 AM (GMT -7)   
Sometimes I think some of us are really sensitive to miniscule changes in our body's workings. Nothing shows up on the traditional tests, but I've been wondering if out bodies start having trouble in one area, long before it shows up on a lab test as abnormal.
Good luck with your testing. How much beta blocker are you on? I loved my Toprol XL, but it made me want to eat all the time, and took away my motivation and endurance. Hopefully you won't be on it too long, and you'll get your thyroid stuff all worked out, and you'll feel great! I'll hope that for you. :)

Sarita
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   Posted 2/22/2007 11:10 AM (GMT -7)   
I am glad I'm going to an osteopathic (D.O.) medical school, because the training tends to focus more on how our bodily systems interrelate and are dependent on each other; allopathic (M.D.) schools tend to look at each system independently. 
 
I am taking 25 mg of atenolol twice a day right now and the heart palpitations are almost nonexistent.  I don't notice any uncomfortable side effects from it; it's making things much more manageable for me.  Today I am going in for my thyroid uptake scan, then tomorrow am having the ultrasound.  Mmm, radioactivity...
 
 

Sarita
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   Posted 2/23/2007 3:23 AM (GMT -7)   

It's past 1 a.m. and I'm having trouble sleeping.  I've been a veritable insomniac for about a month now and it's driving me freakin' berserk!  Either I can't turn my mind off or my heart is pounding in my ears like a jackhammer.  These are evidently classic hyper-T (as I've been calling it) symptoms, since your thyroid is constantly pumping out fight-or-flight hormones (oh, and the fact that I've just about had it up to HERE with this whole ordeal probably doesn't help, either - although it's kind of nice to be able to blame all my mood swings on my berserk thyroid, LOL).

My scan today showed a three-fold increase in the amount of iodine uptake that is considered normal - so basically each test I take solidifies the idea that it's Grave's disease.  I was doing some critical reading today and realized that no matter what treatment option I decide on, I'll end up with ridiculously low thyroid function and need to be on meds forever and see endocrinologists every two months for blood work to make sure I'm not about to drop dead (being slightly melodramatic here).  Not exactly what I was looking forward to when I am about to move across the country for med school and get married and start all these new chapters in my life.  For freak's sake!

Ah, I feel better now...thank you so much for letting me vent.  I am the type of person that vents and then moves on, so now I can officially move on!  Love you guys.


CathyA
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   Posted 2/23/2007 5:26 AM (GMT -7)   
Hi Sarita,
Hang in there! I know its a bummer to think you'll have to be on meds forever...........but aren't you glad there ARE meds out there for you? Life would be pretty awful for you if there weren't. My SIL had graves disease when she was young. She's been on thyroid replacement ever since. She's about 55 now. She's a real powerhouse. I've often wished I had her replacement! hahaha I'm sure you're feeling overwhelmed because of all the symptoms you're having and being a bit sleep-deprived. But soon you will be feeling sooooooooo much better! Hang in there!

7Lil
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   Posted 2/23/2007 9:51 AM (GMT -7)   

Big hugs to you ((((Sarita))))!!!

I love your attitude about everything, I always have.  You seem to roll with the punches and make the best of things.  I, on the other hand, moan and gripe and turn super bitter.  I am determined to adopt your easy-goingness.

Anyway… Sorry about your insomnia and restlessness.  Can you take some sort of sleeping pill?  What about Tylenol PM (or something of the like)?  Just remember that all this will make you a better doc.  Not to mention you will probably be quite popular among the med students.  Your issues might turn out to be a great learning experience for you and them.

So what’s the next step for you?  More docs?

I have to agree with Cathy… At least Grave’s can be managed.  Whereas your D and severe pain are totally sporadic and quite debilitating.  You may have to take pills for the rest of your life, but most of us take something or other anyway.  You’re going to have to buy a bigger purse to fit your giant pill box.  “You hear that rattling?  Here comes Sarah.”  LOL  I crack myself up sometimes.

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Keriamon
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   Posted 2/23/2007 1:23 PM (GMT -7)   
Well, just think of it as a pill that stops your diarrhea. You'd take one of those everyday, gladly, wouldn't you? I certainly take mine gladly!

Lol, Lil. I have a plastic shoebox that I take with me to medieval camping events which is a veritible pharamcy, lol. Couple different pain pills, muscle relaxer, a huge supply of ibuprofen, enough stomach meds to fix anybody of anything, allergy meds, cold meds, cough syrup... you name it. It definitely rattles! Lol. But hey, it's come in handy. On our big, week-long trip, we've exepereinced allergies, a cold, cough, and that viral arthritis I had last year (except Sturt got it while we were on our trip). That had him popping ibprofen and pain pills just to keep going, because he already had a torn rotator cuff, and then the arthritis set in in that same joint. He could hardly get out of bed in the mornings. Between my stomach problems and his back/knees/shoudler problems, I like to keep us covered when it comes to medicine!

For my purse, though, I just carry my Welchol and ibuprofen (again, mostly for Stuart). They don't rattle too much.

Sarita
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   Posted 2/23/2007 4:03 PM (GMT -7)   

Back from the scan and ultrasound.  The scan was pretty consistent with what we saw yesterday.  The ultrasound was just about the most fun thing I've done in years, of course.  The tech poked around and said, "It looks kind of nodular," and I don't really know what that means, but she quickly ultrasounded herself (it was pretty funny) to show me the difference between mine and hers.  Hers was all nice and smooth-looking and mine looked like a bunch of pebbles.  I then went to the GI, who looked at the test results and said, "Woah, when you start talking about T4 and T3, I get lost...better talk to the endocrinologist." He said he didn't want to do anything else with my guts until I get my thyroid taken care of.

It was interesting, actually - we looked at my previous thyroid test records, and the first one was 1.1, the second 0.7, the third even lower...so it looks like over the past couple of years I have been developing this.  Which would make sense.

He also said that the day I had diarrhea 50 times recently was actually probably a thyroid storm, which is a kind of thyroid crisis that can actually be fatal in many cases.  LOVELY. 

Anyway, it's the weekend, which means no more tests/doctors/B.S. until next week!  Tonight Adam and I are headed up north to do some winter camping (in a public use cabin with no electricity/heat/water, just a wood stove, which makes things toasty enough).  For SURE I am bringing my fabulous purple pill box that contains the following: Advil, Tums, Atenolol, Vicodin, Bentyl, and Ambien.  Ambien is a very good friend these days to help with my sleeplessness, I just hesitate to take it every day, which is why I was up until 2:30 a.m. last night!


Canyonbabe711
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   Posted 2/23/2007 4:09 PM (GMT -7)   
Do you find the Ambien bothers your stomach? I found that if it really did a number of me. Made my stomach feel very shaky which is hard to describe and if I took it more than a couple days in a row the problem lasted for days. I switdhed to Lunesta and like it so much better. Ambien makes some people sexier so maybe it is not all bad but it also makes some people eat more and not remember.

Keriamon
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   Posted 2/23/2007 4:39 PM (GMT -7)   
Gosh, Canyon, how would Sarita be able to tell if it bothered her stomach? If she pooped 21 times instead of her usual 20? ROFL!!!

Sarita
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   Posted 2/23/2007 5:47 PM (GMT -7)   

***!  You guys are nuts. 

Ambien is great for me.  It's funny, I DO feel sexier after I take it, like I've had several glasses of wine...but then I don't remember anything the next day, HA!  Adam calls it the "Ambien glaze."

Speaking of Adam, I think he is bewildered by this whole thing.  He's always been so healthy that I think any weirdness like this just freaks him out.  His opinion (and he said "our best bet," not just "yours," which meant a lot to me) is that I should try the anti-thryoid drugs for a year or two before I start killing my thyroid with radioactivity.  I agree.  Although the GI seemed to think my endocrinologist wouldn't let me get away with that.  We'll see!  I'm going to stand up for myself!

 

 


Sarita
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   Posted 2/23/2007 5:49 PM (GMT -7)   
Man, I have to stop being a potty mouth around here...everything I say ends up starred (as in, ***!)!  I'm like a sailor!

CathyA
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   Posted 2/23/2007 5:59 PM (GMT -7)   
Sarita.........trying the med for a year before killing your thyroid sounds like a reasonable idea.......but I think the inconsistency of your thyroid might make life sort of crazy for you. Once your thyroid is inactive, they can better dose you. But I'd definitely ask the endocrinologist about it.

Ides
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   Posted 2/23/2007 6:04 PM (GMT -7)   
I don't think I have read any BETTER news lately than you getting a diagnosis --- FINALLY!!!!!!! I think you send send a copy of the report to Mayo and demand a refund....LOL.....LOL.....LOL

I know it's odd to be happy that someone is told they have such a condition, but it answers SO many questions! All the best to you Sarita! --Ides
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Keriamon
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   Posted 2/27/2007 10:55 AM (GMT -7)   
I agree that it sounds like a better idea to try supressing the thyroid for a while and see if that helps before you go having it removed or otherwise destroyed. I mean, plenty of doctors have thought they knew what was wrong with you before, only to be wrong. Like the antibiotics helped your guts. Why? Do antibiotics help the thyroid too, or do you still have two separate problems? After all you've been through, I'd distrust test results and "AH-HAs!" from doctors too. I think you should just look your endocronologist in the eye and say as much. If they find out your tests were messed up for some other reason, and that your thyroid's not the source of the problem, you can always stop taking the meds; you can never put the thyroid back once it's been removed, though.
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