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mary
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Posted: April 14 2009 at 10:37am | IP Logged Quote mary

i've had an enlarged thyroid for 6 years and had a nodule biopsied at that time. this year, i had another US and biopsy of 2 nodules - one came back suspicious for papillary cancer and the other non-diagnostic. the ENT recommended surgery to remove 1/2 the thyroid, a quick patho check and possibly total removal of the thyroid. i sent the biopsy to the mayo for a 2nd opinion and am waiting to hear back.

i've been reading about iodine and thyroids. all dr's will say that it's not a problem in the US but i have seen reports that iodine deficiency is on the rise in the US. can iodine reverse atypical thyroid cells? am i just wanting an alternative treatment when i should really stick with surgery? does anyone have any advice regarding thyroid surgery, or life on thyroid hormones?
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SaraP
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Posted: April 14 2009 at 11:12am | IP Logged Quote SaraP

Iodine is necessary for the thyroid gland to function - that is, to make thyroid hormone.

An iodine deficiency causes even a normal thyroid gland to be unable to produce adequate levels of thyroid hormone and so the gland swells in response as it tries harder to compensate.

Iodine deficiency usually isn't a problem in the US because most salt is iodized, but if you are on an extremely low salt diet or use mainly kosher or sea salt it is possible.

I don't think an iodine deficiency could cause thyroid cells to become abnormal or that additional iodine would reverse atypical cells.

I've been on thyroid hormones for about 10 years now and my only advice is to have your levels checked regularly especially during and after pregnancy because it's common to need to have your dose adjusted.

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LeeAnn
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Posted: April 14 2009 at 5:27pm | IP Logged Quote LeeAnn

I have hypothyroidism too. But I became iodine deficient (likely) because of celiac disease; my body became deficient in other ways too--iron deficiency anemia and extremely low in vitamin d. I am waiting to get tested, now that I've been a year gluten-free, to see if I still need to take synthroid. If possible, see if anything else could be hampering your nutrient absorption (like celiac or other gastro problem).

I have had the nodules biopsied too--no fun! I hope you will be able to avoid complete thyroid removal. Praying for you.


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JodieLyn
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Posted: April 14 2009 at 9:07pm | IP Logged Quote JodieLyn

It is possible to get enough iodine BUT not have enough of the other minerals to enable assimilation.. you also need iron, manganese, and phosphorus.

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Jen L.
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Posted: April 14 2009 at 10:49pm | IP Logged Quote Jen L.

Hi,
I don't know about thyroid tumors or even if this applies to you, but I feel compelled to tell you that I know someone whose severe complications from thyroid issues disappeared when she stopped drinking fluoridated water.

I posted some links you could read at this link if you want. You are in my prayers.

Blessings,

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mary
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Posted: April 15 2009 at 6:07am | IP Logged Quote mary

thank you all for your replies. i eat a very low sodium diet (always have been very sensitive to salt.) we have a RO water purifier so i don't think that fluoridated water has been a problem for me. we have always used sea salt (not iodinized) and rarely eat processed foods. so, it's entirely possible that i am iodine deficient.

i've read some cancer research papers where rats with breast cancer and thyroid cancer are given iodine and the tumor cells die. so, there is some truth to the idea of taking iodine to get rid of cancer cells.

i'm not sure that my suspicious cells are cancerous. the ENT says he thinks i have 30% chance of having cancer and that the only way to tell is to remove the thyroid nodule and look. i don't want to remove a healthy organ and then be dependent on synthroid forever. on the other hand, i don't want to ignore cancerous cells. right now, i'm just praying that the 2nd opinion comes back normal. and i'm buying some iodine.

sara and leeann, is it hard to find an appropriate dose of synthroid? do you have any advice for finding a good endocrinologist? has anyone had suspicious nodules in their thyroid?
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lilac hill
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Posted: April 15 2009 at 7:50am | IP Logged Quote lilac hill

DD#2 will have 1/2 her thyroid removed in May to remove suspicious growth and check to see if the growth is cancerous. If the cells are benign then she will live with half a thyroid which the doctors say can produce enough hormones without synthroid. If the cell growth is cancerous, they will go in again (the testing process takes 3 days)to remove the rest of the thyroid and give her a dose of radioactive isotope to remove any other suspicious cells. She will then be on synthroid.
The MD also told us that thyroid surgery can interrupt the work of the parathyroid which regulates calcium, so that will be watched and she will possibly be on a calcium supplement.

Prayers coming your way.

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Posted: April 15 2009 at 8:41am | IP Logged Quote Mackfam

Mary - I was diagnosed with hyperthyroid one month postpartum (that was over a year ago). The local doctors wanted to immediately radiate (kill) my thyroid and start me on synthroid. This would have meant immediate weaning. I didn't understand the knee-jerk reaction...apparently most doctors see abnormal labs (and mine were EXTREMELY abnormal) and just say surgery or radiation and get rid of the thyroid. I STRONGLY urge you to get a second and even third opinion from an endocrinologist. Do some digging into their references. The time I spent doing this paid off greatly for me!

I still have my thyroid and did not have to wean. I ended up driving 2 hours south of here to a larger hospital with a concentration of doctors who specialize in certain areas of medicine (Vanderbilt) with a great Endocrinology/Diabetes clinic. The endocrinologist I saw has been watching my thyroid carefully for the last year and was completely supportive of breastfeeding and our openness to more children and thus a more cautious (less invasive) approach to my thyroid challenges. My hyperthyroid numbers are returning to the normal range as of my last check, but I was diagnosed with Hashimoto's Disease which means my numbers *may* go south at some point. And the removal of my thyroid has so far been unnecessary. I do have a very large goiter with some "suspicious" nodules that "bear watching". It does concern me. Right now, my endocrinologist has taken the approach of establishing a baseline (through routine ultrasounds of the thyroid gland) and regular monitoring. Only with growth or suspicious activity will a biopsy be required. The monitoring is a pain, but I feel better now that we aren't jumping into something without having watched it first.

The surgery to remove the thyroid is tricky because as Viv points out it is so close to the parathyroid that often both organs are removed (accidentally) resulting in yet another problem. This is why radiation of the thyroid is often recommended...and a very competent Endo is worth finding!

I'll pray for you, mary...and I would encourage you to get on the phone and do your best to track down an Endocrinologist that specializes and views the thyroid as a necessary gland that is worthy of saving if at all possible. And, just so you can tuck this away in case removal is necessary...replacement of the hormone will be necessary, some people respond very well to synthroid (a synthetic form of the thyroid hormone), but there are natural (animal based) supplements that mimic the thyroid hormone that some people seem to respond to better. Just know that there are two options, but your doctor will only tell you about synthroid. Both take monitoring to get the dose right.

I'm praying for you, mary...I know right where you are because I'm just a few steps behind you.

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Posted: April 15 2009 at 8:58am | IP Logged Quote SaraP

I did not have any trouble finding a good endo, but I have a very straight-forward case of hypothyroidism without any complicating factors (no growths, nodules, etc. - just plain old low function) so my care is pretty much just a matter of checking my levels every few months and adjusting the dose as necessary.

I was originally prescribed the natural thyroid hormone supplements (Armour thyroid), but eventually it was just too hard to keep the dosage properly adjusted, my endo switched me to Synthroid about a year ago and it does work better for me.

The whole thing seems to me to involve a lot of trial and error - one of those areas of medicine that is as much art as science.

Prayers for you!

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mary
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Posted: April 15 2009 at 5:12pm | IP Logged Quote mary

oh viv, i will pray that your dd's surgery/treatment go well. it's hard enough to be going through this as an adult, i cannot imagine being the mom. my heart goes out to you and your daughter.

jennifer, thanks for the push. i have been looking up endocrinologists and thinking of talking with them before i commit to surgery. i will work on setting up some appointments. i wonder how you can politely ask a dr if they think the thyroid is worthy of saving?!

sara, it's so good to hear that you are doing well on synthroid. it makes me feel better about being dependent on thyroid medicine.

how do you find a good endocrinologist?
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mary
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Posted: April 21 2009 at 3:16pm | IP Logged Quote mary

i just wanted to tell you all - be sure and get a 2nd opinion before any major thyroid decisions. my 2nd opinion from mayo came back benign. i can't tell you the relief i feel. so, i'm going to see what i can do to improve the health of my thyroid - what a workhorse that organ is for us mothers.

mary
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