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All Kinds of Questions


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Old 09-10-2008, 09:22 AM   #1
YCMFord
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All Kinds of Questions

Heres my story:

I was admitted to the hospital a few weeks ago for severe bi-lateral pneumonia. During the Chest CT scan (they were worried I had a blood clot), they found nodules on my thyroid, and my primary ordered an ultrasound. I have the ultrasound done, then wind up back in the hospital because the pneumonia got so bad I passed out from not being able to breath. While there, I call my primary and asked him for the results. He said he would give them to me soon (which wound up taking a week). I get a call from him on a Monday telling me to make an appt. with an endocrinologist immediatly, so I do. He gives me info to tell them that my Thyroid is hyperactive, my TSH level is 0.238, and its a multi-nodular goiter. I go to the appt the next day, and my endo doesn't really seem to care that I'm there. He gets my ultrasound info from my primary, and tells me I have a 1.2cm nodule, a 0.6 cm nodule, and 8 or 9 very small ones all around my thyroid. He also says that my levels are normal, and my thyroid is not hyperactive (at this point, I've lost about 20 lbs, but that may be from the pneumonia, and my voice has become raspy, but that may be from the steriods for the pneumonia). I have a fine needle biopsy on 09/23 scheduled, but I have so much conflicting info I don't know what to do. I'm not worried about anything as of this point, I just wish I had more information. It just doesn't make sense why I'm getting different stories from people looking at the exact same paperwork.

Does anyone have any suggestions? Like I said, I'm not worried because chances are that its benign and it'll have to be watched every year, so whatever.

Also, can this cause heartburn? Because man I've been getting some nasty heartburn over the past few weeks.

Thanks for all your help!

 
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Old 09-10-2008, 09:25 AM   #2
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Re: All Kinds of Questions

POI - My appt w/ the endo was yesterday. My resting heart rate was 116 b/m. Now I don't know a lot of medical mumbo-jumbo, but I know thats not normal. But again, it could be from the meds for the pneumonia. Either way, I'm just lost at this point.

 
Old 09-10-2008, 09:39 AM   #3
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Re: All Kinds of Questions

You've got two issues it seems: nodules, and then the effects of hyperthyroid (might be that some of these nodules are "hot" and spit out too much hormone).

Your symptoms, blood pressure, etc, are likely due to too much hormone in your body.

If these nodules are "hot" you may have to be looking at surgery, (or RAI) even if they are benign. There are also some medication alternatives, but they are usually for those with "graves disease" to ease the effects of the symptoms on your body, and put it into remission.

The nodules are most likely benign (95% chance, especially with hot ones), and the fna will help you evaluate that further. The only way to ever know for sure about nodules is to have them removed surgically. But you can live fine and dandy without a thyroid (I had mine removed due to thyroid cancer 3.5 years ago)

 
Old 09-10-2008, 09:53 AM   #4
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Re: All Kinds of Questions

That makes sense. The surgery part doesn't worry me (a very close friend of mine was just told she is in remission for thyroid cancer after radiation and a thyroidectomy, and shes doing very well). The concern isn't for what the diagnosis could/will be (surgery, cancer... although at this juncture I guess its easy for me to say), but why am I being told two different things by two different ppl who are looking at the same lab results and same ultrasounds? At this point, my primary is in panic mode (I had to calm him down a little bit, which I find humerous), and my endo keeps saying (and I will quote) 'Whatever'. I would assume the biopsy should answer most, if not all questions, right?

Thank you so much for your help!

 
Old 09-10-2008, 10:03 AM   #5
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Re: All Kinds of Questions

your endo keeps saying "whatever"???? run away quickly and find another.

even if your endo sounded good, i'd say a 3rd, 4th, or even 5th opinion would be wise.

it seems with thyroid stuff, there is a lot of fluctuation to the treatments doctors prescribe. so many endos are morons, if you ask me, although there are good ones out there.

i'd suggest you see at least one other doctor. preferably one who doesnt say "whatever"

 
Old 09-10-2008, 11:16 AM   #6
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Re: All Kinds of Questions

Endos have a reputation of being 'aloof', to say the least. But there are a few who are at least competent, if not exactly warm and fuzzy. I urge you to find one of those and ditch the idiot you have. Seriously.

The reason you're getting such diverse opinions is because the same black-and-white results show the same thing; it's the interpretation of them that makes the difference. And not all doctors know how to speak "thyroidese". Not even endos, as you so unfortunately discovered.

 
Old 09-11-2008, 10:16 AM   #7
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Re: All Kinds of Questions

I kind of figured after talking to him that he was kind of dumb. At this point, I think I'm going to stick with him, because I called a few other places and the wait time is in months. I'll just have the biopsy done and find out the results, and we'll go from there. Like I said, I'm not super worried at this point, I just want answers.

 
Old 09-12-2008, 08:56 AM   #8
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Re: All Kinds of Questions

I'm going to list a few... I dunno... you can call them symptoms I guess... that have popped up in recent days, and if anyone can let me know if I should be concerned or not, that would be wonderful:

-Pain in ankles (it hurts to walk)
-Random headaches (normally by the end of the day, which is new as of a few days ago)
-Weight loss (I'm going to have my weight done today, but I'm tightening my belt a little more every few days at this point. I lost some weight due to the pneumonia (at least thats what the pulmonologist thinks), but it hasn't stopped, and I've been out of the hospital for a week. And don't get me wrong, its not like I'm not eating. I'm constantly hungry, and I'm always eating. It just seems like I'm losing weight a lot now.)
-Hand tremors (I used to get them as a kid (never saw a doctor for it), but they stopped a few years ago, then they started a few weeks ago. Sometimes they aren't so bad... sometimes whatever I'm holding, I shake so bad I drop it)
-Heartburn (Doesn't matter if I eat anything, drink water... its constant now. A few weeks ago, it used to be that I could snack on some Tums and that would help, but now its just plain painful.)

Like I said, I have a biopsy scheduled on the 23rd, so we'll find out that info then. But I don't want to call my endo and have him tell me 'whatever', and I don't want to call my primary because he'll panic again and send me to the freaking ER again (which is unnecessary). Hell, maybe I'll call my pulmonologist... he seems to be the only competent one in this group :P In all seriousness, I was thinking to wait the weekend and see how I feel. I don't feel sickly, I just don't feel right. By mid-day, I feel exhausted, and thats frusturating.

Does anyone have any suggestions? At this point, I'm not panicing or anything... it is what it is. Unfortunatly, besides my TSH level that was taken 2 weeks ago (0.231 - I have no idea what that means), and the results of the ultrasound (multi-nodular goiter - the largest being 1.2 cm, then next being 0.6cm), I know nothing.

 
Old 09-12-2008, 09:29 AM   #9
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Re: All Kinds of Questions

You've got the classic signs and symptoms of hyperthyroidism. As Reece mentioned, it sounds as if one of those nodules may be "hot"... spewing out excess thyroid hormone which is making you all "racy".

It's unfortunate that your primary is such a wimp and overly excitable. All he has to do is prescribe a beta blocker to calm your heart rate and temper the excess hormone while you're waiting to see a competent endo. (Not that "whatever" dope.)

Start calling different endos immediately and get on an appointment book somewhere. Ask upfront if they keep a cancellation list. (If you don't know, that's a list of people they call to use a cancelled time slot. I got into an endo 6 weeks sooner than my appointed day by being on the cancellation list.)

I have very little doubt that your levels are NOT "normal". The bottom of most TSH ranges is .3. You're already below that, and could be sliding downward daily. Was your free T4 even measured? You didn't mention that. It's extremely important to know that and your free T3. If "whatever" didn't measure those, he's an even bigger idiot that I thought.

Good luck to you!

 
Old 09-12-2008, 10:18 AM   #10
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Re: All Kinds of Questions

Another alternate way around your Endo is an ENT. You will want a solid ENT to remove the bugger if it is necessary anyway. Get your GP to recommend a good thyroid ENT. This will give you a third opinion that should be easier to get access too. As to the biopsy be the be all of results. That is not so.. there is always a chance the the biopsy gives a false negative. It is a matter of spot checking a childs pants for stains. You can not assume because the front is clear that the back side isn't coated in mud. The only way to be 100% sure is to remove the tissue and look at every bit of it. NOW I am not saying you need yours removed... just that that is the only way to get a 100% identification of your thyroid tissue.

The biopsy and an iodine uptake scan as well as a thorough thyriod and adrenal panel should be the first things that your Endo requests. If he doesn't then the ENT should.

Good luck and stick with us. Hopefully we will be able to help.
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Old 09-13-2008, 04:58 AM   #11
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Re: All Kinds of Questions

I have a question as well for anyone: My TSH level is 0.003, which is extremely low. Am I at risk for a stroke? I feel horrible. I went to the ER 3 weeks ago due to extreme pain in my legs and hips. I also have osteopenia, which if I've had hyperthryoidism all this time, is the cause (they just finally spotted it). I have a full thyroid panel next week, they were supposed to have done it already but they did another TSH instead, and it dropped in 4 days from 0.005 to 0.003. Any suggestions on what I should do? Are holistic doctors better with this than regular doctors?

 
Old 09-13-2008, 11:54 AM   #12
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Re: All Kinds of Questions

Hey girl.

Sorry that you are in hyperT land Stephanie. It is not a fun place to be. You need to make sure that they run an FT3 and FT4, TPOAb, TSI, TRAb on you this week. This will cover the blood work for your thyroud. You also need to get them to schedule a RAI Uptake Scan. This will tell you if you have a hot nodule versus the whole thyroid giving you issues. Until they have done all there scans and tests they will not put you on anti-thyroid meds. But they should be able to give you beta-blockers and other meds that will help. In the mean time NO SALT! Go on a salt free diet. Salt is our main source of iodine. Iodine is necessary for the thyroid to make thyroid hormone. If you cut its supply.. you will be able to slow down the issue a bit.

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Old 09-22-2008, 07:24 AM   #13
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Re: All Kinds of Questions

Biopsy is scheduled for tomorrow. What can I expect? What kinds of questions should I be asking? (As you can all tell, I'm confused like you wouldn't believe.) I'm noticing some individuals results can take a while to get back to them. I was going to call my endo on Friday to see if he would have the results by then. Thats a good time frame, right? At this point, I'm pretty sure I'm hyper w/ all the conversations and all the symptoms and signs, so I'll guess we'll see. Again, not worried; just want this all over with (as I'm sure 99.9% of everyone feels the same way with their situation). Again, thanks for all the help!

 
Old 09-22-2008, 07:35 AM   #14
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Re: All Kinds of Questions

Thanks for the input. I was actually hospitalized for 3 days because of my racing pulse and I started having chest pains. They did a couple of tests, TSH 0, T4 12.5, T7 5. My T3 was normal. I see the endo on Wed. Hopefully there will be answers. I also have osteoporosis as a side effect I guess.

 
Old 09-22-2008, 09:14 PM   #15
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Re: All Kinds of Questions

YCM, biopsy experiences vary widely, but most people will tell you it's not so bad. Since you have multiple nodules, you'll probably have an u/s guided one. Hopefully, you'll also be numbed. The worst part will be the recovery, and that's usually just a sore neck/throat for a few days. One thing that I wish I'd known going into it: they don't just stick a needle in and pull stuff out. The quickly move the needle up and down several times to "push" cells up into the needle shaft. I almost started panicking when that started, haha, but overall it was a quick, easy procedure. And yes, no need to worry now because it's most likely NOT cancer.

Steph, I am SO sorry to hear about your hyper thyroid hell! Wow, TSH at 0, I've never heard of that. Best wishes to you and let us know when you get your levels in check. Are they going to put you on something for your osteoporosis?
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