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Support Group?
Hi all. I was wondering if there is any support group for ppl with incidently found thyroid nodules. This diagnosis creates a lot of anxiety and I am lookking for support. Looks like internet serves you with only horror stories. Thanks!
Hi Barb. I was diagnosed with 4mm hypoecoic cystic nodule with some two point central calcification. Doctor says that it is too small for biopsy. Wants to wait and perform US after 6 months.
COMMUNITY LEADER
Oh, that's about as good as it gets, typically, but you still need Free T4 and Free T3, since they are the actual thyroid hormones. TSH might be too low to stimulate your thyroid to produce enough hormones for you and you could still have, what is known as Central, or Secondary, hypothyroidism. That's relatively rare (and unlikely in your case), but it does happen. Those doctors that center on TSH, usually, keep patients ill because they aren't looking at the whole picture.
Another possibility is that you could have thyroid antibodies causing Hashimoto's Thyroiditis... If you weren't tested for those, it can't be ruled out. Many of us have Hashimoto's, and symptoms of hypothyroidism or hyperthyroidism (your TSH doesn't indicate that), for many years before our thyroid, actually, stops producing enough for our hormone levels to drop below ranges and/or for TSH to increase above range. Hashimoto's can/does cause swelling, inflammation and nodules that cause throat pain, feelings of fullness, choking, etc. These feelings are often written off as anxiety or put down to acid reflux, which also cause the same symptoms.
You need the antibody tests, Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin (TgAb). Some doctors will order only the TPOab, but this can actually miss Hashimoto's, since both of the antibodies are markers. Some of us have one or the other; some have them both.
Sometimes we just have to "wait and see" until our doctors get ready to help us... sometimes, we have to go through a lot of doctors before we find one that's willing to look outside the box...
There are, also, websites from which you can order those tests without a doctor's order (in most, but not all states). They aren't covered by insurance, but are very reasonably priced and are a way to get what we feel we need without having to wait for our doctor to get ready to do something. Sometimes, if we go to the doctor with results in hand, we have better luck... other times, it doesn't work that way; it depends on the doctor.
Another possibility is that you could have thyroid antibodies causing Hashimoto's Thyroiditis... If you weren't tested for those, it can't be ruled out. Many of us have Hashimoto's, and symptoms of hypothyroidism or hyperthyroidism (your TSH doesn't indicate that), for many years before our thyroid, actually, stops producing enough for our hormone levels to drop below ranges and/or for TSH to increase above range. Hashimoto's can/does cause swelling, inflammation and nodules that cause throat pain, feelings of fullness, choking, etc. These feelings are often written off as anxiety or put down to acid reflux, which also cause the same symptoms.
You need the antibody tests, Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin (TgAb). Some doctors will order only the TPOab, but this can actually miss Hashimoto's, since both of the antibodies are markers. Some of us have one or the other; some have them both.
Sometimes we just have to "wait and see" until our doctors get ready to help us... sometimes, we have to go through a lot of doctors before we find one that's willing to look outside the box...
There are, also, websites from which you can order those tests without a doctor's order (in most, but not all states). They aren't covered by insurance, but are very reasonably priced and are a way to get what we feel we need without having to wait for our doctor to get ready to do something. Sometimes, if we go to the doctor with results in hand, we have better luck... other times, it doesn't work that way; it depends on the doctor.
COMMUNITY LEADER
I agree, if you've already got 2 opinions, you don't really need a third, but I'd stay with the one who's willing to do another ultrasound in 6 months vs 18 months... that's a long time. I do think you'll have a hard time finding anyone who will do a biopsy on a nodule that small when it doesn't have the distinct characteristics of malignancy.
Is TSH the only thing the tested for thyroid function? That's a pituitary hormone, not a thyroid hormone... You should try to get Free T4 and Free T3 tested. Those are the actual thyroid hormones and will give the full picture of what's going on.
Acid reflux is, often, a symptom of hypothyroidism... Do you have any other symptoms? What was your TSH level? Just because it was in the normal range, doesn't mean it's normal for you...
Is TSH the only thing the tested for thyroid function? That's a pituitary hormone, not a thyroid hormone... You should try to get Free T4 and Free T3 tested. Those are the actual thyroid hormones and will give the full picture of what's going on.
Acid reflux is, often, a symptom of hypothyroidism... Do you have any other symptoms? What was your TSH level? Just because it was in the normal range, doesn't mean it's normal for you...
The calcification are two points in the center. Thye call it punctuate. My TSH levels are normal. I went to ENT complaining about throath pain. It was from reflux and anxiety....Here I am now!
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Two opinions already. The same outcome. ENT said scan after 18 months. Enod 6. I dont think I need a third one.
COMMUNITY LEADER
Cystic nodules are usually benign. I'm not an expert with nodules, but from my reading, there are various types of calcification. Microcalcification is most suspicious for cancer. Yours doesn't seem to be microcalcification.
Your doctor is right about the nodule being too small for biopsy... typically, nodules aren't biopsied until they are 1 cm, unless they are extremely suspicious, then they might try at 5 mm, but if the nodule is too small, they won't be able to get a good sample and the biopsy would be considered inconclusive. The recommendation would, likely, be to wait and see, at that point, also.
Is there an "impression" or recommendation on the report? If so, what does it say?
If it's any consolation, I currently have a 1.1 X 1.0 X 0.8 cm nodule that my doctor refused to refer me for biopsy, also because he said it wasn't big enough. He said I could have another ultrasound in a year, then he cut that back to 6 months, then decided on a nuclear medicine scan, which I'm in the process of doing right now... How's that for fickle??
How did you come to have the ultrasound? Do you have hypo or hyperthyroidism?
Your doctor is right about the nodule being too small for biopsy... typically, nodules aren't biopsied until they are 1 cm, unless they are extremely suspicious, then they might try at 5 mm, but if the nodule is too small, they won't be able to get a good sample and the biopsy would be considered inconclusive. The recommendation would, likely, be to wait and see, at that point, also.
Is there an "impression" or recommendation on the report? If so, what does it say?
If it's any consolation, I currently have a 1.1 X 1.0 X 0.8 cm nodule that my doctor refused to refer me for biopsy, also because he said it wasn't big enough. He said I could have another ultrasound in a year, then he cut that back to 6 months, then decided on a nuclear medicine scan, which I'm in the process of doing right now... How's that for fickle??
How did you come to have the ultrasound? Do you have hypo or hyperthyroidism?
1 Comments
I forgot to say, you're always free to get a second opinion if it will make you feel better...
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