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Found out about my Hurthle Cells four months after FNA...am I too late?
Hi All...
I guess that I am looking for a little reassurance.
I had Hodgkin's Disease and subsequent radiation to my neck when I was 22 years old. I am now 37 years old.
A couple of years after my Hodgkin's, I became hypo (due to the radiation) and started taking Synthroid. Over the years, my body has gradually required more and more of the hormone.
Earlier this year, I started having horrible anxiety and after a blood test with my GP, it was determined that I was taking too high a dosage of Synthroid--so we cut the dosage down. After six weeks, it was determined again that we would need to decrease my dosage even more...and after another six weeks, we decreased it even more. At that point, my GP sent me to an endocrinologist.
My experience with this endocrinologist was not positive. When I discussed the problem with getting my hormone levels in check, he simply said that we should continue to decrease my dosage. I understood, but told him that I was more concerned about why my body was all of a sudden needing less and less hormone, given the fact that my thyroid had been irradiated 15 years earlier. He told me not to worry about it and assured that we just needed to adjust the dosage of Synthroid.
I was concerned at that point because he didn't seem to see a need to get to the bottom of the situation and find out why my thyroid--which supposedly didn't work--was all of a sudden producing more hormone. I had been under the impression that with the radiation, I would need increasingly more hormone for the rest of my life. Anyway, I urged him to look further and he told me not to worry. Only as I was leaving his office that first visit did he stop me and suggest an ultrasound--just to make me feel better.
So, we did the ultrasound and he found three nodules. We scheduled the FNA right away. He called me a couple of days later with the results. He told me that one of the nodules was decisively benign, but the state of the other two nodules could not be determined and that because we couldn't tell about those other two nodules, I should have a total thyroidectomy. I was shocked. It seemed so drastic to remove my whole thyroid just because I had a FNA that came back inconclusive.
I asked him if we should do another FNA and he said that if it comes back inconclusive once, it would most likely come back inconclusive again--so I should go ahead with the total thyroidectomy. I asked him if this was something serious and if I should have the surgery right away. He told me that it was NOT serious and that I didn't have to have it done immediately, but that I should have it removed within the next four months. He told me that it had taken 15 years (since my radiation treatments) to make it to this point and that nothing would happen in the next four or so months. I also asked him if I would need the RAI (which I had read about) and he told me that I wouldn't need it because I didn't have cancer. He reiterated that I would simply need to have my thyroid removed and that was it--nothing else afterwards, because I didn't have cancer.
Of course, I was confused because he said that my results for two of my three nodules were inconclusive--but he was the expert and I trusted him, though I didn't have a lot of confidence in him because he only did the ultrasound that lead to finding the nodules because I insisted. I feel like, with my history of radiation to my neck, he should have been more suspicious of my thyroid problems and done the ultrasound on his own instead of telling me not to worry about it.
So, fast-forward four months. I was told it was nothing serious, so I waited. At around the four month mark, I decided to get a second opinion and called the clinic and asked for a copy of my medical records. When I picked them up, I was shocked with what I read:
Multinodular goiter, nontoxic
Right lobe size: 1.70 x 1.83 cm trv mid, 3.75 2.12 cm sag mid
Right lobe character: homogenous
Right lobe nodule: predominantly solid size: 1.54 cm x 1.65 cm trv inf
Left lobe size: 1.70 x 1.95 cm trv mid, 3.74 x 1.46 cm sag mid
Left lobe character: homogenous
Left lobe nodules: predominantly solid size: 0.52 x 0.25 cm trv mid, mixed solid and systic size: 1.36 x 1.13 cm trv mid, predominantly solid size: 0.53 x 0.53 cm trv inf, predominantly solid size: 0.86 x 1.02 cm mid
Impression: Multinodular goiter with dominant nodule
Then, I looked at the pathology reports and was immediately sick to my stomach:
Nodule 1: Follicular cells, colloid and macrophages consistent with adenomatous nodule. (this was my benign nodule)
Nodule 2: Follicular cells, colloid and macrophages present. Some of the follicular cells have grooves and inclusions. Cannot exclude neoplasm. Recommend excision.
Nodule 3: Abundant Hurthle cells, colloid and a few follicular cells. Cannot exclude Hurthle cell neoplasm. Recommend excision.
This was on August 9th that I found out about this. I went to see another two endocrinologists and also spoke with a pathologist friend of the family. They all recommend excision. The endocrinologist that I will be seeing from now on, told me that I need to have it out because when Hurthle cells are present, there is a higher likelihood of malignancy.
Then, I started reading more about Hurthle cells online and my heart just sunk. It sounds as though when it is discovered that someone has Hurthle cells present, they should promptly have it removed. We are now almost five months after my FNA that showed Hurthle cells. I have now scheduled my surgery, but I couldn't get in before September 29. That will be almost six months!
I have read that Hurthle Cell cancer is aggressive and I am terrified that I have waited too long and that if it is indeed cancer, it will have spread. Does anyone know how quickly it spreads? I have no idea if my nodules are even the same size as they were back in April.
Also, I am terrified because I do have a history of radiation to the neck.
On the positive side, I am 37 years old, my nodules seem to be smaller than others I read about and I have had no problems with swallowing, hoarseness or shortness of breath. You also cannot see that I have nodules if you look at my neck. We only discovered them because I insisted on getting to the bottom of my strange thyroid hormone problem. However, I think that I have read that it isn't good if you have Hurthle cells and your thyroid isn't inflamed (?). I just don't know.
Could anyone out there offer a little reassurance? Thank you so much!!!
I guess that I am looking for a little reassurance.
I had Hodgkin's Disease and subsequent radiation to my neck when I was 22 years old. I am now 37 years old.
A couple of years after my Hodgkin's, I became hypo (due to the radiation) and started taking Synthroid. Over the years, my body has gradually required more and more of the hormone.
Earlier this year, I started having horrible anxiety and after a blood test with my GP, it was determined that I was taking too high a dosage of Synthroid--so we cut the dosage down. After six weeks, it was determined again that we would need to decrease my dosage even more...and after another six weeks, we decreased it even more. At that point, my GP sent me to an endocrinologist.
My experience with this endocrinologist was not positive. When I discussed the problem with getting my hormone levels in check, he simply said that we should continue to decrease my dosage. I understood, but told him that I was more concerned about why my body was all of a sudden needing less and less hormone, given the fact that my thyroid had been irradiated 15 years earlier. He told me not to worry about it and assured that we just needed to adjust the dosage of Synthroid.
I was concerned at that point because he didn't seem to see a need to get to the bottom of the situation and find out why my thyroid--which supposedly didn't work--was all of a sudden producing more hormone. I had been under the impression that with the radiation, I would need increasingly more hormone for the rest of my life. Anyway, I urged him to look further and he told me not to worry. Only as I was leaving his office that first visit did he stop me and suggest an ultrasound--just to make me feel better.
So, we did the ultrasound and he found three nodules. We scheduled the FNA right away. He called me a couple of days later with the results. He told me that one of the nodules was decisively benign, but the state of the other two nodules could not be determined and that because we couldn't tell about those other two nodules, I should have a total thyroidectomy. I was shocked. It seemed so drastic to remove my whole thyroid just because I had a FNA that came back inconclusive.
I asked him if we should do another FNA and he said that if it comes back inconclusive once, it would most likely come back inconclusive again--so I should go ahead with the total thyroidectomy. I asked him if this was something serious and if I should have the surgery right away. He told me that it was NOT serious and that I didn't have to have it done immediately, but that I should have it removed within the next four months. He told me that it had taken 15 years (since my radiation treatments) to make it to this point and that nothing would happen in the next four or so months. I also asked him if I would need the RAI (which I had read about) and he told me that I wouldn't need it because I didn't have cancer. He reiterated that I would simply need to have my thyroid removed and that was it--nothing else afterwards, because I didn't have cancer.
Of course, I was confused because he said that my results for two of my three nodules were inconclusive--but he was the expert and I trusted him, though I didn't have a lot of confidence in him because he only did the ultrasound that lead to finding the nodules because I insisted. I feel like, with my history of radiation to my neck, he should have been more suspicious of my thyroid problems and done the ultrasound on his own instead of telling me not to worry about it.
So, fast-forward four months. I was told it was nothing serious, so I waited. At around the four month mark, I decided to get a second opinion and called the clinic and asked for a copy of my medical records. When I picked them up, I was shocked with what I read:
Multinodular goiter, nontoxic
Right lobe size: 1.70 x 1.83 cm trv mid, 3.75 2.12 cm sag mid
Right lobe character: homogenous
Right lobe nodule: predominantly solid size: 1.54 cm x 1.65 cm trv inf
Left lobe size: 1.70 x 1.95 cm trv mid, 3.74 x 1.46 cm sag mid
Left lobe character: homogenous
Left lobe nodules: predominantly solid size: 0.52 x 0.25 cm trv mid, mixed solid and systic size: 1.36 x 1.13 cm trv mid, predominantly solid size: 0.53 x 0.53 cm trv inf, predominantly solid size: 0.86 x 1.02 cm mid
Impression: Multinodular goiter with dominant nodule
Then, I looked at the pathology reports and was immediately sick to my stomach:
Nodule 1: Follicular cells, colloid and macrophages consistent with adenomatous nodule. (this was my benign nodule)
Nodule 2: Follicular cells, colloid and macrophages present. Some of the follicular cells have grooves and inclusions. Cannot exclude neoplasm. Recommend excision.
Nodule 3: Abundant Hurthle cells, colloid and a few follicular cells. Cannot exclude Hurthle cell neoplasm. Recommend excision.
This was on August 9th that I found out about this. I went to see another two endocrinologists and also spoke with a pathologist friend of the family. They all recommend excision. The endocrinologist that I will be seeing from now on, told me that I need to have it out because when Hurthle cells are present, there is a higher likelihood of malignancy.
Then, I started reading more about Hurthle cells online and my heart just sunk. It sounds as though when it is discovered that someone has Hurthle cells present, they should promptly have it removed. We are now almost five months after my FNA that showed Hurthle cells. I have now scheduled my surgery, but I couldn't get in before September 29. That will be almost six months!
I have read that Hurthle Cell cancer is aggressive and I am terrified that I have waited too long and that if it is indeed cancer, it will have spread. Does anyone know how quickly it spreads? I have no idea if my nodules are even the same size as they were back in April.
Also, I am terrified because I do have a history of radiation to the neck.
On the positive side, I am 37 years old, my nodules seem to be smaller than others I read about and I have had no problems with swallowing, hoarseness or shortness of breath. You also cannot see that I have nodules if you look at my neck. We only discovered them because I insisted on getting to the bottom of my strange thyroid hormone problem. However, I think that I have read that it isn't good if you have Hurthle cells and your thyroid isn't inflamed (?). I just don't know.
Could anyone out there offer a little reassurance? Thank you so much!!!
Having had Hurthles cells in my thyroid,I can empathise with you.
One key factor of getting them in the first place, is radiation, like you. I have never had any radiation, apart from the dentist and even then they use the lead apron and collar. So I have no idea where mine came from.
The only way they can tell if it is classified as a cancer (and here is where it is now confusing as the latest thinking is ALL Hurthle Cell nodules are cancer) is when it is removed and looked at by the pathologist.
Mine was held together in a sense, by a thin wall. Perhaps mine was caught in time. I had a huge goitre and a 4.5cms nodule strangling me! (not to mention the other 10 smaller nodules!) Had I not had the serious Hashimoto's disease enlarging my goitre, I would never have known I had the Hurthle cells and would probably be dead, 3 years on.
So you are lucky! (Ok you probably don't feel it!) But you pushed and you got answers.
Provided it is contained inside your nodule, you won't drop dead. It is actually more common than people realise, Hurthle cells in the thyroid. Seems they are a wide range of cells that are follicular in nature then start to change into a new form. Once they are more than 75% of Hurthle cells in the sample (FNA) then it is time to whip it out.
They seriously do not know the whole logistics of how HC's occur or react, so they err on the side of caution and take the thyroid out.
Much and all as I have had a heck of a time after my TT geting my doses right, I am glad it is out. For you, you may well have an easier time, but in my humble opinion, a few more weeks isn't going to change much of anything. My left side was removed in May 2007. I complained about the right side pretty much straight away. It was not till the Late November 2007 they did a FNA. Nearly a month later in Dec 2007 the right side with the HC's was removed. So it was obviously there, just growing away merrily in its little capsule!
Good luck and if you need further info you can PM me!
Cheers!
One key factor of getting them in the first place, is radiation, like you. I have never had any radiation, apart from the dentist and even then they use the lead apron and collar. So I have no idea where mine came from.
The only way they can tell if it is classified as a cancer (and here is where it is now confusing as the latest thinking is ALL Hurthle Cell nodules are cancer) is when it is removed and looked at by the pathologist.
Mine was held together in a sense, by a thin wall. Perhaps mine was caught in time. I had a huge goitre and a 4.5cms nodule strangling me! (not to mention the other 10 smaller nodules!) Had I not had the serious Hashimoto's disease enlarging my goitre, I would never have known I had the Hurthle cells and would probably be dead, 3 years on.
So you are lucky! (Ok you probably don't feel it!) But you pushed and you got answers.
Provided it is contained inside your nodule, you won't drop dead. It is actually more common than people realise, Hurthle cells in the thyroid. Seems they are a wide range of cells that are follicular in nature then start to change into a new form. Once they are more than 75% of Hurthle cells in the sample (FNA) then it is time to whip it out.
They seriously do not know the whole logistics of how HC's occur or react, so they err on the side of caution and take the thyroid out.
Much and all as I have had a heck of a time after my TT geting my doses right, I am glad it is out. For you, you may well have an easier time, but in my humble opinion, a few more weeks isn't going to change much of anything. My left side was removed in May 2007. I complained about the right side pretty much straight away. It was not till the Late November 2007 they did a FNA. Nearly a month later in Dec 2007 the right side with the HC's was removed. So it was obviously there, just growing away merrily in its little capsule!
Good luck and if you need further info you can PM me!
Cheers!
Hi,
WOW .. so sorry your Endo's description of "inconclusive" was related to the FNA not stating if it's true cancer or cells vs. inconclusive as most of us understand it to mean not enough capture of cells or mixed with blood, fluid, etc. to determine!!!
Having sort of been where you are in the waiting stages, I can sympathize and wanted to say hi and welcome. My FNA was atypical and I was told even if it wasn't malignent they had a good chance of turning into cancer. So we did a partial and the frozen biopsy revealed no cancer - closed me up - and on the final pathology report they found two tiny micro-papillary nodules. I am watched like a hawk now for the other side.
To err on the side of caution, esp with H cells abundent, I'd probably do the TT also. And intersting to note, my other side never worked right again so am on meds for life anyway . .
Keep us posted -- we're here for you.. Sometimes the Wating is the hardest part .. it was for me.
C~
partial thyroidectomy 1/07
WOW .. so sorry your Endo's description of "inconclusive" was related to the FNA not stating if it's true cancer or cells vs. inconclusive as most of us understand it to mean not enough capture of cells or mixed with blood, fluid, etc. to determine!!!
Having sort of been where you are in the waiting stages, I can sympathize and wanted to say hi and welcome. My FNA was atypical and I was told even if it wasn't malignent they had a good chance of turning into cancer. So we did a partial and the frozen biopsy revealed no cancer - closed me up - and on the final pathology report they found two tiny micro-papillary nodules. I am watched like a hawk now for the other side.
To err on the side of caution, esp with H cells abundent, I'd probably do the TT also. And intersting to note, my other side never worked right again so am on meds for life anyway . .
Keep us posted -- we're here for you.. Sometimes the Wating is the hardest part .. it was for me.
C~
partial thyroidectomy 1/07
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