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Hack my weird Thyroid issue?

by (2977)
Updated about 9 hours ago
Created May 26, 2011 at 5:40 PM

I'm not expecting that anyone will magically know what's going on with my thyroid (but if someone does that'd be pretty cool too!) and I totally get that this is not a forum for professional medical advice (caveat emptor and all that). But there are some very smart people on PaleoHacks and more than a few have mentioned thyroid issues, so perhaps this will ring a bell with someone.

(btw in case there are any "Paleo Cops" around, I suspect the original problem is related to a long history of the worst kind of SAD eating and just might be fixable in a Paleo context)

The short version is that I have a benign but large thyroid cyst that doesn't go away, and the doctor is talking about removing that half of the organ if another biopsy (which includes draining) doesn't fix it.

Here's the longer version:

At my last check-up my doctor noticed that my thyroid seemed swollen. I got a sonogram that showed I had a "complex cyst" - which is basically multiple cysts - with one particularly large one on my right side. Apparently thyroid cysts are very common - most people have some and mine probably have been there since my 20's (in my 50's now).

I got an appointment with an excellent endocrinologist, who did a biopsy on the largest cyst. The biopsy needle can be used to suck the contents out, and he pulled out an astounding quantity of liquid - I think it was almost a CUP of reddish stuff. It was rather liquid (it could have been solid or spongey but wasn't, fortunately) and came out easily.

(I took pictures of the filled syringes he used btw - but I'll do everyone a favor and not post the photos...)

We got the results back yesterday (a week later), and the Dr. described it as a "non result". No evidence of malignancy which is great, but nothing definitive about what it IS. Plus in the week since the biopsy the cyst seems to be as big as ever - I'm pretty sure it's filled with liquid again.

I'll get another sonogram in a while, and we'll discuss whether to do another biopsy/draining again, or whether to 'cut to the chase' and remove that side of the thyroid (or do both).

So far as I know I've never had a disturbing result on my blood tests (and didn't this time either) except for too much 'bad' cholesterol (lately much improved with paleo eating) and perhaps iron on the low side for a guy. I never chased down the 'subclinical' thyroid thing I've read about so don't know if that's an issue - always had warm hands though...

The Endo said that cyst liquid usually is a precursor fluid, used by the thyroid to synthesize the hormones. For some reason the thyroid can overproduce this precursor but still produce the hormones appropriately, so the fluid backs up. It's not clear though if that's what it is in my case. I'm thinking of it like an internal zit that can be drained multiple times before it's 'empty'...

So - any thoughts?

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659 · June 03, 2011 at 2:18 AM

You'll get used to the lack of professionalism on the part of so-called "professionals" soon enough. You end up being your own best advocate and finding a good doc to help you along the way. The realthyroid.com site mods also keep a list of good docs to help you find one in your area.

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2977 · May 31, 2011 at 3:24 PM

I discovered that site over the weekend, and am exploring additional blood work to do on my own. In retrospect it's disturbing that the doctor who first discovered the swelling didn't include a more extensive thyroid panel since she was prescribing my generic blood tests anyway. Or that my endocrinologist didn't ask for one - OR raise an eyebrow at my apparent anemia (which I only realized was still present after I had them fax the results to me). Really frustrating and apparently par for the course.

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2206 · May 27, 2011 at 2:09 AM

if you'll allow me to be self-centered for a second--thanks for making me feel glad i didn't end up getting the surgery. i was all scheduled and ready to go when my insurance got kicked out from underneath me. i regretted it for a long time, but now i realize retrospectively it was kind of a lucky break. my partner is on daily hormone replacement, too (his whole hpa axis is frigged from radiation therapy for a pituitary tumor) and seeing what he deals with, i'm really glad that i avoided it, especially since i am doing just fine with the cyst as far as i know. thanks for sharing.

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2435 · May 27, 2011 at 12:22 AM

Not helpful, but I've gotta say, that effin sucks.

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2977 · May 26, 2011 at 9:41 PM

I'm not going to have it removed unless the doctors (and second opinion etc) make a *very* compelling case to do so. Even if I have to have it 'drained' once a year or so (and pay my uber-expensive co-pay) it's superior to becoming totally dependent on an even more artificial solution - and still keep paying those co-pays!

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2977 · May 26, 2011 at 9:35 PM

Correction: I ate soy, but mostly since my 30's. If it's a factor it probably wasn't the cause (if indeed it started that young).

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2977 · May 26, 2011 at 9:30 PM

Thanks for adding this, amanda - I'll keep you in mind when I follow up with the doctors. It only recently occurred to me: why didn't anyone order or ask about the more detailed thyroid tests?? After all, I got my blood test form AFTER my doctor raised concerns about the thyroid. She should have added them, and the endocrinologist should have asked. But noooo - they have their cookie-cutter assembly line and no longer think like craftsmen/women (and I *like* my endocrinologist!). I ate a lot of soy here too btw.

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3 Answers

957a563c7e4a165663fd3c71207c39da
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659 · May 29, 2011 at 5:56 AM

A good forum to get some more info on is realthyroidhelp.com

Lots of knowledgeable peeps with personal experience and options other than surgery and synthetic meds.

Good luck :D

Fe29f6658ce67c1ecc4a22e960be7498
2977 · May 31, 2011 at 3:24 PM

I discovered that site over the weekend, and am exploring additional blood work to do on my own. In retrospect it's disturbing that the doctor who first discovered the swelling didn't include a more extensive thyroid panel since she was prescribing my generic blood tests anyway. Or that my endocrinologist didn't ask for one - OR raise an eyebrow at my apparent anemia (which I only realized was still present after I had them fax the results to me). Really frustrating and apparently par for the course.

957a563c7e4a165663fd3c71207c39da
659 · June 03, 2011 at 2:18 AM

You'll get used to the lack of professionalism on the part of so-called "professionals" soon enough. You end up being your own best advocate and finding a good doc to help you along the way. The realthyroid.com site mods also keep a list of good docs to help you find one in your area.

Medium avatar
3
19479 · May 26, 2011 at 9:35 PM

During a routine physical prior to my freshmen year in high school my MD found a "thickness" on my thyroid that turned out to be a cyst. Fine-needle biopsy resulted in red (blood) fluid and they scheduled a partial thyroidectomy (right lobe). When the surgeon opened me up (under general anesthesia thankfully) they had a pow-wow and after much discussion (my neck was flayed open like one of Pin-heads friends for 6 hours) they decided to remove the whole shebang.

The results of the lab tests showed that it was an unidentified mass of tissue that was not cancer and probably benign (although I am inclined to think that it was definitely benign).

I have since had a few lipomas (benign fat deposits) pop up (one on my elbow near the site of an injury, a few on my head about the size of a pea) and the one on my elbow (which had been removed and tested) also showed up as a simple benign growth.

So...now I am lacking a thyroid and am completely dependent on Synthroid and the medical establishment (blood tests every 6 months, perscriptions, doctor's visits) to maintain proper metabolic function. Is this worth not having to "worry" about it ("it" being cancer)? I don't think so. If I wasn't a teenager I wouldn't have gone along with the doctor's and my parents' desire to cut out my thyroid gland.

If I crash-land on a dessert island, if the world ends (wasn't that supposed to happen this weekend btw?) and I don't have a life-time supply of Synthroid stocked up I am officially effed.

What should you do? It's your call and your health but I think that a thyroid is a terrible thing to waste.

95601768ec9cb75cc3a9cbcd2271ed14
2206 · May 27, 2011 at 2:09 AM

if you'll allow me to be self-centered for a second--thanks for making me feel glad i didn't end up getting the surgery. i was all scheduled and ready to go when my insurance got kicked out from underneath me. i regretted it for a long time, but now i realize retrospectively it was kind of a lucky break. my partner is on daily hormone replacement, too (his whole hpa axis is frigged from radiation therapy for a pituitary tumor) and seeing what he deals with, i'm really glad that i avoided it, especially since i am doing just fine with the cyst as far as i know. thanks for sharing.

Fe29f6658ce67c1ecc4a22e960be7498
2977 · May 26, 2011 at 9:41 PM

I'm not going to have it removed unless the doctors (and second opinion etc) make a *very* compelling case to do so. Even if I have to have it 'drained' once a year or so (and pay my uber-expensive co-pay) it's superior to becoming totally dependent on an even more artificial solution - and still keep paying those co-pays!

1fc9c11cf23b2f62ac78979de933ad83
2435 · May 27, 2011 at 12:22 AM

Not helpful, but I've gotta say, that effin sucks.

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2206 · May 26, 2011 at 9:20 PM

I've got no answers, but just wanted to chime in and say that I'm a fellow multi-nodular thyroid cyster, so I'll be watching this question. Mine first swelled up dramatically when I was 21 and I've had to have it aspirated a few times since then (I'm now 31). I was similarly amazed at how much fluid can come out of there. My original otolaryngologist, after determining it was benign, offered to remove it (would have been pretty much everything on my right side, minus a part of the parathyroid) and claimed it would be "mostly for cosmetic reasons." I've always been disappointed in the lack of interest virtually every doctor I've ever seen has had in it--I mean, yeah, it's common, but I highly doubt it is just the funky harmless quirk with no cause they breezily dismiss it as. Anyway, I never ended up having the surgery because I lost my health insurance and haven't had any since. I've always had a suspicion that it may have been caused in part by life long hormone tampering (I was a soy formula baby, I had kind of a stressful childhood, I was a vegan who was heavy into soy products for a while, I was given hormones for the amenorrhea that resulted from being a vegan starting in my early teens and I then went on to take birth control in my late teens), but who knows? I will say that since starting to eat ancestral/ paleo/ WAPF/ whatever you wanna call it I haven't had to get the little lady drained and I can't feel it as much. My thyroid levels are also better than they have ever been, save for when I was VLC for a bit. But, again, who knows?

Fe29f6658ce67c1ecc4a22e960be7498
2977 · May 26, 2011 at 9:35 PM

Correction: I ate soy, but mostly since my 30's. If it's a factor it probably wasn't the cause (if indeed it started that young).

Fe29f6658ce67c1ecc4a22e960be7498
2977 · May 26, 2011 at 9:30 PM

Thanks for adding this, amanda - I'll keep you in mind when I follow up with the doctors. It only recently occurred to me: why didn't anyone order or ask about the more detailed thyroid tests?? After all, I got my blood test form AFTER my doctor raised concerns about the thyroid. She should have added them, and the endocrinologist should have asked. But noooo - they have their cookie-cutter assembly line and no longer think like craftsmen/women (and I *like* my endocrinologist!). I ate a lot of soy here too btw.

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