Re: Do Folks w/ Nodules Need an Endo (was Gail, you can whine, etc.)

[Guest guest]

Most docs would send you to an imaging center for thyroid sonograms. If you have not had thyroid cancer, then you do not need RAI scans. Those scans only show the activity of the nodules.

If you need a fine needle biopsy, you can be referred to an ENT for that, or to an imaging center for CT guided biopsy.

If you are hypothyroid and have nodules, the most important thing is to keep your TSH suppressed to attempt to shrink those nodules.

> >> > > > A non-endo can monitor your nodules, if they are willing to do so. The> > only thing that endos can do that other docs cannot do is order RAI> > ablation and scans.> > > > One of our members is a thyca patient. She sees her endo once a year for> > follow-up. She sees a good alternative doc in another state for her> > thyroid meds and other hormones. The endo does not like it, but he has> > little choice. Betsy is a redhead. . . . .> > > >>

[Guest guest]

Hmmm.... thanks. Very helpful indeed.

> Most docs would send you to an imaging center for thyroid sonograms. If

> you have not had thyroid cancer, then you do not need RAI scans. Those

> scans only show the activity of the nodules.

>

> If you need a fine needle biopsy, you can be referred to an ENT for

> that, or to an imaging center for CT guided biopsy.

>

> If you are hypothyroid and have nodules, the most important thing is to

> keep your TSH suppressed to attempt to shrink those nodules.

[Guest guest]

Gail,

I have four nodules that are monitored by my GP. I was on a six month

schedule, but my 7mm is now 6mm so they have said one a year will be fine

for my ultra sound. I see my GP about once a year now. I've been on a

stable 4 grains for close to three years now.

Kate G

Hashi's

AS

At 11:07 AM 1/10/2009, you wrote:

>Would a non-endo monitor nodules by physical exam, then? I'm not

>personally worried about cancer and would be fine w/ once a year scan,

>particularly since I know my nodules get smaller with replacement

>therapy; I guess it's just a question of finding an endo. who'd be

>willing to do that and not the meds, but maybe if I switch to another

>doc for the meds, I'll have more luck if they refer me to whatever

>endo they work with for that vs. asking my current endo to just not do

>meds anymore but would you scan me once a year. (Didn't work last

>time!) Thanks!!

>

>Gail

>

>

> >

> >

> > A non-endo can monitor your nodules, if they are willing to do so. The

> > only thing that endos can do that other docs cannot do is order RAI

> > ablation and scans.

> >

> > One of our members is a thyca patient. She sees her endo once a year for

> > follow-up. She sees a good alternative doc in another state for her

> > thyroid meds and other hormones. The endo does not like it, but he has

> > little choice. Betsy is a redhead. . . . .

> >

> >

>

>

>------------------------------------

>

>

[Guest guest]

I don't know per se about non-endo's monitoring nodules but my endo

monitored without meds (I didn't even realize meds were an option

until I got on here).

I noticed the nodule and my GP ordered bloodwork, ultrasound, thyroid

uptake and scan. Then he sent me to an endo. The endo just looked over

everything and ordered a FNA. One was fine and one was indeterminate.

She said that she could take them out now or monitor for 6 months. I

had another ultrasound 6 mo later and the indeterminate one got

markedly bigger (AFN still showed indeterminate) so I'm having a

partial thyroidectomy on the 22nd. Not every doc goes straight for the

meds. Another friend saw an endo for a couple of years for her nodule

before deciding to remove and was never on meds. (Hers was very large).

Someone said that only an endo can order a scan, which wasn't my

experience.

Although since maybe my thyroid function is fine the meds may have

screwed me up that's why I didn't get them. I don't know.

I'd get scanned every 6 months. I know it's a different part of the

body but I went from normal pap smears for over a decade to cancer in

1 year so if you've got something--anything--that has the potential to

be or turn to cancer, I'd have it monitored more frequently. But maybe

that's just me. Just me personally, if even there was the remotest

chance it was cancer I'd want it out of my body....

Lynn

> >

> >

> > A non-endo can monitor your nodules, if they are willing to do so. The

> > only thing that endos can do that other docs cannot do is order RAI

> > ablation and scans.

> >

> > One of our members is a thyca patient. She sees her endo once a

year for

> > follow-up. She sees a good alternative doc in another state for her

> > thyroid meds and other hormones. The endo does not like it, but he has

> > little choice. Betsy is a redhead. . . . .

> >

> >

>

[Guest guest]

Only endos can order RAI. Any doc can order a thyroid sonogram, which is what you would be having every six months.

> > >> > > > > > A non-endo can monitor your nodules, if they are willing to do so. The> > > only thing that endos can do that other docs cannot do is order RAI> > > ablation and scans.> > > > > > One of our members is a thyca patient. She sees her endo once a> year for> > > follow-up. She sees a good alternative doc in another state for her> > > thyroid meds and other hormones. The endo does not like it, but he has> > > little choice. Betsy is a redhead. . . . .> > > > > >> >>

[Guest guest]

Thanks, Kate, Lynn, others.

Interesting your endo didn't even try meds. Mine didn't even want to

consider removing anything until he saw whether the nodules would

shrink w/ meds, which they did, since the nodules represented an

overgrowth from my thyroid basically working too hard to make up for a

deficit in thyroid hormone from the destruction my immune system had

caused to the thyroid. He says if they shrink with meds, there's just

a very remote chance anything is cancerous, but obviously they still

need to be monitored. I guess some people choose to just have them

removed anyway since it simplifies replacement therapy. Apparently if

you have nodules thyroid function can be a bit of a roller coaster, as

I saw last September with mine.

Gail

> I don't know per se about non-endo's monitoring nodules but my endo

> monitored without meds (I didn't even realize meds were an option

> until I got on here).

>

> I noticed the nodule and my GP ordered bloodwork, ultrasound, thyroid

> uptake and scan. Then he sent me to an endo. The endo just looked over

> everything and ordered a FNA. One was fine and one was indeterminate.

> She said that she could take them out now or monitor for 6 months. I

> had another ultrasound 6 mo later and the indeterminate one got

> markedly bigger (AFN still showed indeterminate) so I'm having a

> partial thyroidectomy on the 22nd. Not every doc goes straight for the

> meds. Another friend saw an endo for a couple of years for her nodule

> before deciding to remove and was never on meds. (Hers was very large).

>

> Someone said that only an endo can order a scan, which wasn't my

> experience.

>

> Although since maybe my thyroid function is fine the meds may have

> screwed me up that's why I didn't get them. I don't know.

>

> I'd get scanned every 6 months. I know it's a different part of the

> body but I went from normal pap smears for over a decade to cancer in

> 1 year so if you've got something--anything--that has the potential to

> be or turn to cancer, I'd have it monitored more frequently. But maybe

> that's just me. Just me personally, if even there was the remotest

> chance it was cancer I'd want it out of my body....

>

> Lynn

[Guest guest]

A number of factors go into the decision to attempt to shrink nodules with suppression: the size of the nodule, the patient's current TSH, the patient's likely tolerance for suppression, and the doctor's tolerance for suppression.

You have about a 50% chance of shrinking small nodules with a suppressive dose of thyroid hormone. Those over 1 cm (10 mm) are not likely to shrink.

If your TSH is already low, then it would not be prudent to add thyroid hormone.

But the number one reason that suppression is not attempted is that some doctors are too afraid of suppression.

>> Thanks, Kate, Lynn, others.> > Interesting your endo didn't even try meds. Mine didn't even want to> consider removing anything until he saw whether the nodules would> shrink w/ meds, which they did, since the nodules represented an> overgrowth from my thyroid basically working too hard to make up for a> deficit in thyroid hormone from the destruction my immune system had> caused to the thyroid. He says if they shrink with meds, there's just> a very remote chance anything is cancerous, but obviously they still> need to be monitored. I guess some people choose to just have them> removed anyway since it simplifies replacement therapy. Apparently if> you have nodules thyroid function can be a bit of a roller coaster, as> I saw last September with mine.> > Gail> > > I don't know per se about non-endo's monitoring nodules but my endo> > monitored without meds (I didn't even realize meds were an option> > until I got on here).> > > > I noticed the nodule and my GP ordered bloodwork, ultrasound, thyroid> > uptake and scan. Then he sent me to an endo. The endo just looked over> > everything and ordered a FNA. One was fine and one was indeterminate.> > She said that she could take them out now or monitor for 6 months. I> > had another ultrasound 6 mo later and the indeterminate one got> > markedly bigger (AFN still showed indeterminate) so I'm having a> > partial thyroidectomy on the 22nd. Not every doc goes straight for the> > meds. Another friend saw an endo for a couple of years for her nodule> > before deciding to remove and was never on meds. (Hers was very large). > > > > Someone said that only an endo can order a scan, which wasn't my> > experience.> > > > Although since maybe my thyroid function is fine the meds may have> > screwed me up that's why I didn't get them. I don't know.> > > > I'd get scanned every 6 months. I know it's a different part of the> > body but I went from normal pap smears for over a decade to cancer in> > 1 year so if you've got something--anything--that has the potential to> > be or turn to cancer, I'd have it monitored more frequently. But maybe> > that's just me. Just me personally, if even there was the remotest> > chance it was cancer I'd want it out of my body....> > > > Lynn>

[Guest guest]

Juts want to say that replacement is anything BUT simple once the

thyroid is removed. Getting doctor to give you a dose that is

sufficient to make you fell well is very hard.

Marti

> Thanks, Kate, Lynn, others.

>

> Interesting your endo didn't even try meds. Mine didn't even want to

> consider removing anything until he saw whether the nodules would

> shrink w/ meds, which they did, since the nodules represented an

> overgrowth from my thyroid basically working too hard to make up for a

> deficit in thyroid hormone from the destruction my immune system had

> caused to the thyroid. He says if they shrink with meds, there's just

> a very remote chance anything is cancerous, but obviously they still

> need to be monitored. I guess some people choose to just have them

> removed anyway since it simplifies replacement therapy. Apparently if

> you have nodules thyroid function can be a bit of a roller coaster, as

> I saw last September with mine.

>

> Gail

[Guest guest]

I hear ya. Theoretically simple, in practice unimaginably frustrating.

Gail

>

> Juts want to say that replacement is anything BUT simple once the

> thyroid is removed. Getting doctor to give you a dose that is

> sufficient to make you fell well is very hard.

>

> Marti