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Issues with nodule?
Hi guys!
I have had a nodule in my left thyroids for some years now, and after noticing it (because of pressure and occationally pain) I have developed a long list of weird symptoms that no doctor has been able to figure out the reason to (weightloss, hairloss, muscle tiredness/cramps/spasms/pain, tachycardia, raynauds, and many more....
Ultrasound checkups did show a little irregular nodule, but it looked benign to them. They also found a smaller nodule which they did not pay any attention. I have done three biopsies at the local hospital, all came back saying it looked benign (one came back inconclusive so had to come back for another one).
In dec 2017 I went to Mayo where they did a new ultrasound, and there they said something else! The doctor claimed I have multiple nodules and that he could se signs of inflammation in the tissue. He said it looked like beginning hashimotos, but all my thyroid blood work looks fine. He also said he strongly recommended to have the smaller nodule investigated to be sure it was benign.
Back home I was admitted to hospital in march because of all my symptoms, and they did a full body PET scan. What came up was some uptake in my thyroids and along the aorta asscendens, the latter they did not know the cause of (claiming it could be vessels or lymph nodes). I had yet another ultrasound and a biopsy done of the largest nodule, but when asking them if they could take a sample from the smaller one aswell they refused and said that was of no use. And, when telling them what the doctor at Mayo had said she only replied that she could not see any of that during her examination. I didn’t argue any more with her, so I went home.
Now I am sitting here wondering how it is possible for two doctors to disaggree so much when it comes to my nodule/thyroid, what should I do?
Has anyone else in here experienced anything like this?
I have had a nodule in my left thyroids for some years now, and after noticing it (because of pressure and occationally pain) I have developed a long list of weird symptoms that no doctor has been able to figure out the reason to (weightloss, hairloss, muscle tiredness/cramps/spasms/pain, tachycardia, raynauds, and many more....
Ultrasound checkups did show a little irregular nodule, but it looked benign to them. They also found a smaller nodule which they did not pay any attention. I have done three biopsies at the local hospital, all came back saying it looked benign (one came back inconclusive so had to come back for another one).
In dec 2017 I went to Mayo where they did a new ultrasound, and there they said something else! The doctor claimed I have multiple nodules and that he could se signs of inflammation in the tissue. He said it looked like beginning hashimotos, but all my thyroid blood work looks fine. He also said he strongly recommended to have the smaller nodule investigated to be sure it was benign.
Back home I was admitted to hospital in march because of all my symptoms, and they did a full body PET scan. What came up was some uptake in my thyroids and along the aorta asscendens, the latter they did not know the cause of (claiming it could be vessels or lymph nodes). I had yet another ultrasound and a biopsy done of the largest nodule, but when asking them if they could take a sample from the smaller one aswell they refused and said that was of no use. And, when telling them what the doctor at Mayo had said she only replied that she could not see any of that during her examination. I didn’t argue any more with her, so I went home.
Now I am sitting here wondering how it is possible for two doctors to disaggree so much when it comes to my nodule/thyroid, what should I do?
Has anyone else in here experienced anything like this?
Barb135; Thank you for your reply!
To be more correct the doctor at Mayo said he could see more than the two nodules found at home, a big one and a smaller one plus many tiny ones. He showed me on the screen that the tissue looked like there were alot of "bubbles", and he said that was inflammation....
He writes in the report:
"She had left neck discomfort in the past , and back in 2015, she underwent an ultrasound. Outside reports document at that time a nodularity in the left lobe that was targeted by FNA and reportedly found to be benign . A repeat ultrasound was performed in March of this year, which is more detailed and describes a nodularity of 14 x 18 mm without calcifications in the left lobe. This was again biopsied and found to be benign. Her thyroid function has been normal and remains so today.
Impression, Imaging studies: Her neck ultrasound was reviewed. The thyroid parenchyma shows some microsystic changes on both sides. On the left side, there are two nodules that seem to be mainly spongiform, the largest one at 2 cm. There are no abnormal lymph nodes.
Multinodular thyroid with changes suggestive of Hashimoto's thyroiditis. At this point the patient is euthyroid, and these nodules are low suspicion. "
He did though tell me he strongly recommended a biopsy from the smaller nodule.
The reports from my local hospital in 2017 says:
"In left glandula thyroidea there is a nodule, 14 x 18 mm not securely encapsulated and with a little rough appaerance. Some minor low attenuated areas, but no cysts. No calsifications. I the lower part of the thyroid in relation to the nodule there is another smaller sized nodule of 1 cm, similar appearance. There is no increased doppler signal in the nodules. Right gland looks slightly enlarged. No pathologigal glands observed in the neck.
R: Nodules in the left glandula thyroidea, further testing required"
I find it a little strange that the doctor at home did not see the multinodular thyroid that Mayo has described. She even said that she didnt think the changes in my thyroid look like hypothyroid changes at all, and wasnt at all interested in hearing about what the doctors at Mayo had said or found.
When it comes to my thyroid function tests, here are my results:
-Aug 2016: TSH: 1.00 (ref: 0.24-3.78), Free thyroxine: 13,6 (ref 11.6-19.1)
-Nov 2016: TSH: 1,2 (ref 0.20-4.00), T4: 15,5 (ref (11-23), TPO: 34 (less than 100)
-Aug 2017: TSH: 0.96 (ref: 0.24-3.78), Free thyroxine: 14.7 (ref: 11.6-19.1)
-March 2018: -Tyreoglobulin 72 (under 30), TSH and free T4: normal. Tyreoglobulin antibodies and anti-TPO are both within normal range (range not noted in the results)
To be more correct the doctor at Mayo said he could see more than the two nodules found at home, a big one and a smaller one plus many tiny ones. He showed me on the screen that the tissue looked like there were alot of "bubbles", and he said that was inflammation....
He writes in the report:
"She had left neck discomfort in the past , and back in 2015, she underwent an ultrasound. Outside reports document at that time a nodularity in the left lobe that was targeted by FNA and reportedly found to be benign . A repeat ultrasound was performed in March of this year, which is more detailed and describes a nodularity of 14 x 18 mm without calcifications in the left lobe. This was again biopsied and found to be benign. Her thyroid function has been normal and remains so today.
Impression, Imaging studies: Her neck ultrasound was reviewed. The thyroid parenchyma shows some microsystic changes on both sides. On the left side, there are two nodules that seem to be mainly spongiform, the largest one at 2 cm. There are no abnormal lymph nodes.
Multinodular thyroid with changes suggestive of Hashimoto's thyroiditis. At this point the patient is euthyroid, and these nodules are low suspicion. "
He did though tell me he strongly recommended a biopsy from the smaller nodule.
The reports from my local hospital in 2017 says:
"In left glandula thyroidea there is a nodule, 14 x 18 mm not securely encapsulated and with a little rough appaerance. Some minor low attenuated areas, but no cysts. No calsifications. I the lower part of the thyroid in relation to the nodule there is another smaller sized nodule of 1 cm, similar appearance. There is no increased doppler signal in the nodules. Right gland looks slightly enlarged. No pathologigal glands observed in the neck.
R: Nodules in the left glandula thyroidea, further testing required"
I find it a little strange that the doctor at home did not see the multinodular thyroid that Mayo has described. She even said that she didnt think the changes in my thyroid look like hypothyroid changes at all, and wasnt at all interested in hearing about what the doctors at Mayo had said or found.
When it comes to my thyroid function tests, here are my results:
-Aug 2016: TSH: 1.00 (ref: 0.24-3.78), Free thyroxine: 13,6 (ref 11.6-19.1)
-Nov 2016: TSH: 1,2 (ref 0.20-4.00), T4: 15,5 (ref (11-23), TPO: 34 (less than 100)
-Aug 2017: TSH: 0.96 (ref: 0.24-3.78), Free thyroxine: 14.7 (ref: 11.6-19.1)
-March 2018: -Tyreoglobulin 72 (under 30), TSH and free T4: normal. Tyreoglobulin antibodies and anti-TPO are both within normal range (range not noted in the results)
4 Comments
You've had 2 biopsies and both have been benign. If the smaller nodule has no suspicious characteristics, there would be no reason to do a biopsy on it. The Mayo doctor may have made the verbal suggestion to have a biopsy out of an abundance of caution, due to the size of the nodule but should have put the recommendation in his report if he really thought it should be done.
Please forgive me if I tell you things you already know, but I notice in your original post, you mention "thyroids", so just to clarify - you only have one thyroid gland which consists of 2 lobes (left and right) and one isthmus which connects the lobes. Nodules on either lobe qualify as being on your thyroid gland. A nodule on the left lobe and a nodule on the right lobe would qualify as a multi-nodular thyroid.
Inflammation can come and go...I don't know how long it was between the time you had the ultrasound at Mayo and when you had the one at your home hospital; the inflammation seen by the doctor at Mayo could have disappeared or diminished by the time you had the ultrasound at your home hospital or as I noted previously, the Mayo doctor said he could see signs of inflammation and early stages of Hashimoto's; your home doctor may not have considered it remarkable enough to comment on.
Your home doctor saw the multinodular thyroid, as evidenced by: "R: Nodules in the left glandula thyroidea, further testing required". It's also saying that the nodules have no calcifications or vascularity, which would be more characteristic of cancer and is probably why she doesn't think it needs a biopsy. It's also saying that the right lobe is enlarged, which means "goiter" - common with Hashimoto's, even though the doctor is denying that as a possibility, which is not unusual. The report does acknowledge that your thyroid needs further testing/follow up, so it's important to make sure that's done.
Your TSH and Free T4 are well within the normal ranges for 2016 and 2017 but your Free T4 is lower than I'd expect with some of the symptoms you noted. Do you have the actual results and reference ranges from 2018? Just being in normal ranges don't really mean anything because many of us are in normal ranges and still have symptoms of a thyroid condition. Your levels may actually be suggestive of Secondary (also known as Central) hypothyroidism, in which the thyroid may work fine, but there's a problem with either the pituitary or hypothalamus gland in which there isn't enough TSH to adequately stimulate the thyroid.
That said, one problem I see is that there's been no Free T3 testing and Free T3 is the hormone that's actually used by almost every cell in the body. Without knowing what that level is, it's really hard to determine what the problem might be.
Are you still having the symptoms you noted in your original post? Have you vitamin B-12, vitamin D or ferritin levels tested? If so, it would be helpful if you could post those results and reference ranges, as well. Those vitamins/minerals are all related to thyroid hormone metabolism and can contribute to thyroid related symptoms.
It's not unusual for doctors to disagree. Both doctors did see the multi-nodular thyroid; they just worded their reports differently. Some doctors (like your home doctor, maybe??) have big egos and get on their high horse when patients want a second opinion. Although it's possible to see Hashimoto's via ultrasound, hypothyroidism can only be determined via symptoms and blood tests. There are doctors that will deny Hashimoto's can be diagnosed via ultrasound and since your antibody tests seem to be coming back negative and your thyroid blood work is coming back within normal ranges, I'm not the least surprised that your home doctor would deny that you have either Hashimoto's or hypothyroidism.
My first suggestion would be to find a different doctor if that's possible because the one you have is likely to keep you ill for a long time. I'm not nearly as worried about the nodules on your thyroid as I am the possible lack of adequate thyroid hormones.
Please forgive me if I tell you things you already know, but I notice in your original post, you mention "thyroids", so just to clarify - you only have one thyroid gland which consists of 2 lobes (left and right) and one isthmus which connects the lobes. Nodules on either lobe qualify as being on your thyroid gland. A nodule on the left lobe and a nodule on the right lobe would qualify as a multi-nodular thyroid.
Inflammation can come and go...I don't know how long it was between the time you had the ultrasound at Mayo and when you had the one at your home hospital; the inflammation seen by the doctor at Mayo could have disappeared or diminished by the time you had the ultrasound at your home hospital or as I noted previously, the Mayo doctor said he could see signs of inflammation and early stages of Hashimoto's; your home doctor may not have considered it remarkable enough to comment on.
Your home doctor saw the multinodular thyroid, as evidenced by: "R: Nodules in the left glandula thyroidea, further testing required". It's also saying that the nodules have no calcifications or vascularity, which would be more characteristic of cancer and is probably why she doesn't think it needs a biopsy. It's also saying that the right lobe is enlarged, which means "goiter" - common with Hashimoto's, even though the doctor is denying that as a possibility, which is not unusual. The report does acknowledge that your thyroid needs further testing/follow up, so it's important to make sure that's done.
Your TSH and Free T4 are well within the normal ranges for 2016 and 2017 but your Free T4 is lower than I'd expect with some of the symptoms you noted. Do you have the actual results and reference ranges from 2018? Just being in normal ranges don't really mean anything because many of us are in normal ranges and still have symptoms of a thyroid condition. Your levels may actually be suggestive of Secondary (also known as Central) hypothyroidism, in which the thyroid may work fine, but there's a problem with either the pituitary or hypothalamus gland in which there isn't enough TSH to adequately stimulate the thyroid.
That said, one problem I see is that there's been no Free T3 testing and Free T3 is the hormone that's actually used by almost every cell in the body. Without knowing what that level is, it's really hard to determine what the problem might be.
Are you still having the symptoms you noted in your original post? Have you vitamin B-12, vitamin D or ferritin levels tested? If so, it would be helpful if you could post those results and reference ranges, as well. Those vitamins/minerals are all related to thyroid hormone metabolism and can contribute to thyroid related symptoms.
It's not unusual for doctors to disagree. Both doctors did see the multi-nodular thyroid; they just worded their reports differently. Some doctors (like your home doctor, maybe??) have big egos and get on their high horse when patients want a second opinion. Although it's possible to see Hashimoto's via ultrasound, hypothyroidism can only be determined via symptoms and blood tests. There are doctors that will deny Hashimoto's can be diagnosed via ultrasound and since your antibody tests seem to be coming back negative and your thyroid blood work is coming back within normal ranges, I'm not the least surprised that your home doctor would deny that you have either Hashimoto's or hypothyroidism.
My first suggestion would be to find a different doctor if that's possible because the one you have is likely to keep you ill for a long time. I'm not nearly as worried about the nodules on your thyroid as I am the possible lack of adequate thyroid hormones.
Thanks again for replying!
The doctor at Mayo said he strongly adviced me to do a biopsy of the smaller nodule, so I am just a little confused why he meant it was important while the doctors here at Home doesnt bother at all.
And yeah, I understand that two nodules is also a multinodular thyroid, I am just wondering why the doctor at Home did not see the many smaller ones that Mayo found. The doctor at Mayo claimed there are many tiny nodules besides the two larger ones (if I understood him correctly). It was about 5 months between the two appointments, so guess you could be right about the inflammation. The annoying thing is that the local doctors werent at all interested in hearing about it, and claimed «there is no inflammation!».
I do have all the symptoms still, and many more! I also have to mention I have a positive ANA and scl70 antibodies, plus antibodies against the liver and nervous system . The problem is that they havent been able to diagnose anything. They have found pericard fluid, poor functioning muscles in my GI-system, gastricitis, low lymphocytes, low D-vitamin, low iron.... Hyperreflexia, hypotonic muscles.... Dry mouth, det eyes.... Periodic hairloss, my hair has become thin and brittle.... And I have weird stuff like pale yellowish skin and periods of cold sweat and nausea. So many weird things which they claim is «nothing». I also have signs of small fiber neuropathy. I can list the blood test result too later today
The doctor at Mayo said he strongly adviced me to do a biopsy of the smaller nodule, so I am just a little confused why he meant it was important while the doctors here at Home doesnt bother at all.
And yeah, I understand that two nodules is also a multinodular thyroid, I am just wondering why the doctor at Home did not see the many smaller ones that Mayo found. The doctor at Mayo claimed there are many tiny nodules besides the two larger ones (if I understood him correctly). It was about 5 months between the two appointments, so guess you could be right about the inflammation. The annoying thing is that the local doctors werent at all interested in hearing about it, and claimed «there is no inflammation!».
I do have all the symptoms still, and many more! I also have to mention I have a positive ANA and scl70 antibodies, plus antibodies against the liver and nervous system . The problem is that they havent been able to diagnose anything. They have found pericard fluid, poor functioning muscles in my GI-system, gastricitis, low lymphocytes, low D-vitamin, low iron.... Hyperreflexia, hypotonic muscles.... Dry mouth, det eyes.... Periodic hairloss, my hair has become thin and brittle.... And I have weird stuff like pale yellowish skin and periods of cold sweat and nausea. So many weird things which they claim is «nothing». I also have signs of small fiber neuropathy. I can list the blood test result too later today
"The presence of Scl-70 antibodies (also referred to as topoisomerase I, topo-I or ATA) is considered diagnostic for systemic sclerosis (SSc). Scl-70 antibodies alone are detected in about 20 percent of SSc patients and are associated with the diffuse form of the disease, which may include specific organ involvement and poor prognosis. Scl-70 antibodies have also been reported in a varying percentage of patients with systemic lupus erythematosus (SLE)." - URUP labs - Scleroderma (Scl-70) (ENA) Antibody, IgG
Yes, I have been through more than one round of testing for this disease but they cant find any signs of it exept raynauds (which they believe is not caused by scleroderma since the capillaroscopy test is normal).
But thanks for your reply!
But thanks for your reply!
COMMUNITY LEADER
The ultrasound at your local hospital indicated a larger and a small nodule. The doctor at Mayo said he found "multiple nodules"... Multiple nodules is anything more than one - could be the same 2 your local hospital found or it could be more than that...
Do you have copies of both ultrasound reports so you can compare them to see what each found?
The biggest difference is that the doctor at Mayo recommended biopsy of he smaller nodule - typically biopsy isn't done on any nodule less than 1 cm unless it's suspicious for cancer - do you know how large that nodule is? In addition, the doctor at Mayo said he saw inflammation suggestive of Hashimoto's - that's not a reason to biopsy a nodule because a biopsy won't determine if you have Hashimoto's.
You can either go by the ultrasound results and say you have Hashimoto's, based on that. You said your thyroid blood work is all normal... did they do both antibody tests to confirm Hashimoto's? It's important to note, however, that some people are diagnosed with Hashimoto's even if they have negative antibody counts? If they didn't do antibody tests, that would be the next step. Many of us have Hashimoto's for years before there's enough damage done to our thyroid gland to cause thyroid hormone levels to go out of range.
You said the doctor at Mayo could "see signs of inflammation"; it's possible that whatever inflammation (or signs of) that he saw were gone by the time your doctor did her investigation or it's possible that she simply didn't see the same things. That's why we get second opinions - because it's not unusual for doctors to disagree with one another.
Thyroid uptake means you thyroid was absorbing iodine. This typically happens when we have hyperthyroidism, which isn't uncommon in the early stages of Hashimoto's. It's not unusual to alternate between hyper, hypo and normal in the beginning.
If you aren't comfortable with what your doctors are doing, you can call the doctor at Mayo and ask them to consult with your doctor or you can get a third opinion.
All of that said, are you still having the same symptoms you posted at the beginning of your question? Many of those are symptoms we see with hyperthyroidism. Some symptoms can cross over and apply to either hyper or hypo...
If you have copies of your current labs, it would be most helpful if you could post the results so we could see what they are. Even though they might be "in range" doesn't mean they're right for you. Be sure to post the reference ranges listed on the lab report since ranges vary lab to lab and have to come from your own report.
Do you have copies of both ultrasound reports so you can compare them to see what each found?
The biggest difference is that the doctor at Mayo recommended biopsy of he smaller nodule - typically biopsy isn't done on any nodule less than 1 cm unless it's suspicious for cancer - do you know how large that nodule is? In addition, the doctor at Mayo said he saw inflammation suggestive of Hashimoto's - that's not a reason to biopsy a nodule because a biopsy won't determine if you have Hashimoto's.
You can either go by the ultrasound results and say you have Hashimoto's, based on that. You said your thyroid blood work is all normal... did they do both antibody tests to confirm Hashimoto's? It's important to note, however, that some people are diagnosed with Hashimoto's even if they have negative antibody counts? If they didn't do antibody tests, that would be the next step. Many of us have Hashimoto's for years before there's enough damage done to our thyroid gland to cause thyroid hormone levels to go out of range.
You said the doctor at Mayo could "see signs of inflammation"; it's possible that whatever inflammation (or signs of) that he saw were gone by the time your doctor did her investigation or it's possible that she simply didn't see the same things. That's why we get second opinions - because it's not unusual for doctors to disagree with one another.
Thyroid uptake means you thyroid was absorbing iodine. This typically happens when we have hyperthyroidism, which isn't uncommon in the early stages of Hashimoto's. It's not unusual to alternate between hyper, hypo and normal in the beginning.
If you aren't comfortable with what your doctors are doing, you can call the doctor at Mayo and ask them to consult with your doctor or you can get a third opinion.
All of that said, are you still having the same symptoms you posted at the beginning of your question? Many of those are symptoms we see with hyperthyroidism. Some symptoms can cross over and apply to either hyper or hypo...
If you have copies of your current labs, it would be most helpful if you could post the results so we could see what they are. Even though they might be "in range" doesn't mean they're right for you. Be sure to post the reference ranges listed on the lab report since ranges vary lab to lab and have to come from your own report.
1 Comments
Oh and yes, I do have these symptoms. They started ver mildly years ago about the same time as I noted the nodule, but after having my second baby 4years ago they escalated. i havea 2 pages long list
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