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First post...need encouragement and a hug

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Old 10-26-2007, 11:05 AM   #1
Join Date: Oct 2007
Location: near Boston, MA
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libraryninja HB User
Unhappy First post...need encouragement and a hug

Hi all

I've been lurking for a little while, ever since a recent thyroid ultrasound. But this is my first post. I just got back from my first endocrinology appt and I'm feeling at a I thought I'd see if anyone of you had any input or suggestions.

I've been feeling crappy for almost a year now: intestinal issues, moodiness, fatigue, weight gain, restless sleep, menstrual problems, always cold, etc. The intestinal problems are what got me to speak up to my primary care doc. She was concerned, so she sent me for a colonoscopy. That was normal, but while on the table the gastroenterologist noticed my thyroid was enlarged. So he did a basic thyroid panel (basically just TSH)...TSH was 3.6, which the gastroentro. said was normal. However, he wanted me to follow up with my PCP.

PCP ordered an ultrasound and a full thyroid panel. Lab results were:
TSH 3.21 (0.27-4.20 reference)
Free T4 1.4 (0.9-1.7 ng/dL)
Total T3 1.25 (0.8-2.0 ng/mL)
Prolactin 14.7 (4.8-23.0 ng/mL)
Thyroglobulin <1.8 (0.0-3.9 IU/mL)
Thy Peroxidase 1.6 (0.0-8.9 IU/mL)

The ultrasound found a nodule on my right lobe that measures 2.1x1x1 cm.

My PCP referred me to an endo because of the nodule and what she said were positive antibodies. I just saw the endo today. The endo doesn't think my symptoms are thyroid related and doesn't want to treat me at this point (well, except for the nodule...I have a biopsy scheduled). She said that, unless the TSH is above 5, with symptoms, there isn't any clinical evidence that treatment will do any good. She also said that my antibodies are negative.

Two of my sisters have Hashimoto's, so I've been doing a lot of research about it. The endo today said that it's likely my thyroid will give out given the current condition and my family history, but at this point she's just going to check the nodule and then follow up with the thyroid labs every 6 months (unless I get pregnant...then as early in the pregnancy as possible.) I'm frustrated because I had really hoped that this was it...I'd finally find out what's wrong with me and get treatment.

What should I do? Is there anything I can do? I'm just so tired of feeling *off* all the time. I used to be at the gym 5-6 times a week and now, some days, I can barely get out of bed.

I need someone to tell me that it will get better...

- LibraryNinja

p.s. don't know if it matters...but I also have Raynaud's and a positive ANA

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Old 10-26-2007, 12:17 PM   #2
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Re: First post...need encouragement and a hug

What a clever, clever gastro doc! Who'd have thought he would even look at something at the opposite end...
Seriously, that guy is on the ball. A gem in the medical world.

Your endo holds a common view among that speciality, but he's wrong. You clearly have symptoms, and treatment now rather than later can prevent more nodules from forming and the goiter from getting bigger.

The only endo that I saw treats even if TSH is in range, when there are symptoms and antibodies present. She knows that early treatment can do the things I mentioned above. Her position is uncommon among endos, though.

I strongly urge you to find a doctor who will treat you now, before you get even worse. It doesn't have to be an endo; a good family practice DO or MD may be the ticket. If you check Armour Thyroid's physician finder, you may be able to find a more progressive thyroid doc who agrees that early treatment isn't taboo.

With your family history, signs and symptoms, I wouldn't wait. I had to be aggressive about getting treatment myself, so I understand how tough it can be to find a good thyroid doc, but it's truly worth the effort.

Old 10-26-2007, 01:59 PM   #3
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Re: First post...need encouragement and a hug

I agree with Midwest ~ gotta love that gastro! And I also agree with family history and your own autoimmune issues that I would keep looking for a doctor willing to treat. I would also like to add that you should probably get your thyroid optimized BEFORE trying to get pregnant as there is research that shows that hypothyroidism can cause miscarriage or birth defects.

Old 10-29-2007, 03:51 PM   #4
Join Date: Oct 2007
Location: near Boston, MA
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libraryninja HB User
Re: First post...need encouragement and a hug

Thank you, ladies. You confirmed what my gut instinct was...that I need to get treated. I had really been hoping that the endo would see that, but I guess not. I've been keeping track of my lab results and appointments so, hopefully, I can give the info to another doc who sees things a little differently.

I'm just a little worried about being able to find another endo. My insurance requires referrals and it's been hard enough already getting referrals to doctors (I see a rheumatologist for Raynaud's and getting that referral has been like pulling teeth!) Guess I won't know 'til I try, though...


Old 10-29-2007, 04:17 PM   #5
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Re: First post...need encouragement and a hug

That's a decent size nodule you got there---After the fna, you might want to find a really good surgeon.

I think they will treat and investigate the nodule separately, because you don't seem to have a multinodular thyroid, which is hashis related, but one single which your doctors are doing the right thing in following up on.

Old 10-30-2007, 05:00 AM   #6
Join Date: Oct 2007
Location: near Boston, MA
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libraryninja HB User
Re: First post...need encouragement and a hug

Reece - you can actually see it when I swallow! I can't believe I hadn't noticed it earlier...'cuz now it's all I can see

My fna will probably be in December and the endo did mention surgery a lot (since it's so big). Though we'll see what the biopsy comes up with. Part of me really just wants it out, while the other part doesn't want to have to have surgery.

- LibraryNinja

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