Aa
LOOKING FOR ANYONE THOUGHTS HERE??? PTH DISEASE??
Some of you know I had a US scan a while back - actually Two of them. I'd like to know what course you would take if you were me on this.
I have two US scans posted below - the first one was just a scan finding a nodule - then the second one was "to be" the FNA US guided biospy which was a failure.
What would you do?
You'll see what I mean after you read it.
1st February 2008
History: 42 female - long history throid disease RAI/Graves Jan 2004
Finding: Right lobe of the thyroid measures 2.2x1.0x0.9cm It has mildly hertergeneous echo texture and the margins are indistinct. There is increased vascularity associated with it. No right lobe nodules present. Left lobe measures 3.4x1.6x0.9cm. In the lower pole of the left lobe there is a well circumscribed oval isoechoic nodule, 11x10x8mm Mild increase vascularity. Remainer of the left lobe has mildly hetergenous echo texture. The isthmus appears quite atrophic. There does not appear to be a mass effect by the thyroid ot the left thyroid nodule upon adjecent structure.
Impression: Decreased size of the thyroid /mildly hetergenous echo texture likely secondary to RAI and/ or previous thyroiditis. Solitary 1cm solid nodule lower left pole. Isoechoic texture suggest beign lesion amenable FNA US guided - if desired.
MARCH 2008
This report freaks me out still.
Finding: Referred for an US guided biopsy of a 1cm thyroid nodule. Patient history RAI ablation 2004 - Native gland is somewhat atrophic and a 1cm nodule arises form the posterior portion of the left thyroid bed measuring 13mmx8mmx9mm An attempt was made at an US guided needle biopsy however, because of the deep location as well as size, I was unsure if the needle tip was in the lesion itself. The patient had significant discomfort during the attempts. approx 15 minutes into many attempts - both patient and I agreed to stop attempts. Patient refused any additional sampling. No samples were aspirated Not to be made that the lesion itself may represent parathyriod adenoma.
Impression: Atempted biopsy of the "nodule" just posterior to the thyroid bed and adjecent to the common carotid artery. Three to six month followup recommended. Correlation with serum calcium level is recommended.
( I STILL SHUDDER THINKING BACK TO THAT DAY)
So there you have it - what a story hey? I got a radiologist thinking it is a parathyroid ademona ( which I lean to think) but no one is taking this seriosly - at least not yet.
I fought to get my calcium checked and it came back somewhat high - but not "enough " 9.9 ( just under 10) I tell you "whatever this thing is when I lye on my left side to long - at night - it wakes me up - I swear the gravity leans on my carotid artery and until I wake up and get my head up for a while it hurts.
Now IF it IS parathyroid ademona - FNA biopsies are dangerous - they release the PTH homones into the blood and can cause a stroke - which a feel I have A-fib now at times. IF we go on the first findings - then the risk of it possible being Thyca is high due to the lesion structure and RAI right? BUT a biopsy - because of location is almost impossble.
So it is like I feel I have a death sentence. Either stoke out - or ThyCa speading.
I haven't had a follow up yet. Partially because a part of me "gave up" - I work a demanding full time job and after 8hrs I litteraly collapse - no joke - I am exhausted. I sleep like cr@p, due to the pressing on that artery I think. I just haven't made the time to go back - maybe purposely to some extent. AND being confused that If I get sent for another FNA - it may hurt me as the first one did. See below.
That FNA sent me in hyper mode for 3 days with A-fib and hyperness. It reminded me of when I was hyperstorming with Graves in 2004. I swear PTH must have leaked out - no proof - but from what I read on hyperparathyroidism - doing an FNA will do that to a patient.
I'm thinking in my non - medical background - I have primary hyperparathyroidism - with secondary Hashimoto/hypothyroidism due to RAI.
Do you think I'm correct?
So people what's your thought here? I go on Oct31 to my MD in bioidentical hormones and Nov 3 to the MD that is my overall Armour provider.
I should have my lab work up back by the time I see the doc on 10-31. Not sure if another calcium test was done either.
Sleep sure would be nice let me tell you.
I have two US scans posted below - the first one was just a scan finding a nodule - then the second one was "to be" the FNA US guided biospy which was a failure.
What would you do?
You'll see what I mean after you read it.
1st February 2008
History: 42 female - long history throid disease RAI/Graves Jan 2004
Finding: Right lobe of the thyroid measures 2.2x1.0x0.9cm It has mildly hertergeneous echo texture and the margins are indistinct. There is increased vascularity associated with it. No right lobe nodules present. Left lobe measures 3.4x1.6x0.9cm. In the lower pole of the left lobe there is a well circumscribed oval isoechoic nodule, 11x10x8mm Mild increase vascularity. Remainer of the left lobe has mildly hetergenous echo texture. The isthmus appears quite atrophic. There does not appear to be a mass effect by the thyroid ot the left thyroid nodule upon adjecent structure.
Impression: Decreased size of the thyroid /mildly hetergenous echo texture likely secondary to RAI and/ or previous thyroiditis. Solitary 1cm solid nodule lower left pole. Isoechoic texture suggest beign lesion amenable FNA US guided - if desired.
MARCH 2008
This report freaks me out still.
Finding: Referred for an US guided biopsy of a 1cm thyroid nodule. Patient history RAI ablation 2004 - Native gland is somewhat atrophic and a 1cm nodule arises form the posterior portion of the left thyroid bed measuring 13mmx8mmx9mm An attempt was made at an US guided needle biopsy however, because of the deep location as well as size, I was unsure if the needle tip was in the lesion itself. The patient had significant discomfort during the attempts. approx 15 minutes into many attempts - both patient and I agreed to stop attempts. Patient refused any additional sampling. No samples were aspirated Not to be made that the lesion itself may represent parathyriod adenoma.
Impression: Atempted biopsy of the "nodule" just posterior to the thyroid bed and adjecent to the common carotid artery. Three to six month followup recommended. Correlation with serum calcium level is recommended.
( I STILL SHUDDER THINKING BACK TO THAT DAY)
So there you have it - what a story hey? I got a radiologist thinking it is a parathyroid ademona ( which I lean to think) but no one is taking this seriosly - at least not yet.
I fought to get my calcium checked and it came back somewhat high - but not "enough " 9.9 ( just under 10) I tell you "whatever this thing is when I lye on my left side to long - at night - it wakes me up - I swear the gravity leans on my carotid artery and until I wake up and get my head up for a while it hurts.
Now IF it IS parathyroid ademona - FNA biopsies are dangerous - they release the PTH homones into the blood and can cause a stroke - which a feel I have A-fib now at times. IF we go on the first findings - then the risk of it possible being Thyca is high due to the lesion structure and RAI right? BUT a biopsy - because of location is almost impossble.
So it is like I feel I have a death sentence. Either stoke out - or ThyCa speading.
I haven't had a follow up yet. Partially because a part of me "gave up" - I work a demanding full time job and after 8hrs I litteraly collapse - no joke - I am exhausted. I sleep like cr@p, due to the pressing on that artery I think. I just haven't made the time to go back - maybe purposely to some extent. AND being confused that If I get sent for another FNA - it may hurt me as the first one did. See below.
That FNA sent me in hyper mode for 3 days with A-fib and hyperness. It reminded me of when I was hyperstorming with Graves in 2004. I swear PTH must have leaked out - no proof - but from what I read on hyperparathyroidism - doing an FNA will do that to a patient.
I'm thinking in my non - medical background - I have primary hyperparathyroidism - with secondary Hashimoto/hypothyroidism due to RAI.
Do you think I'm correct?
So people what's your thought here? I go on Oct31 to my MD in bioidentical hormones and Nov 3 to the MD that is my overall Armour provider.
I should have my lab work up back by the time I see the doc on 10-31. Not sure if another calcium test was done either.
Sleep sure would be nice let me tell you.
well
here I am - a typical woke from a dead sleep to "sit up" for a while. Feels like I have a kink in my neck and there is pain/stiffness in my shoulder blade - neck and head. Almost feels like a numbness in my left eye and eyebrow.
a whole 5 hrs of sleep and have to preform 8 hrs at work. This is the worst part - being tired. I can handle the pain I suppose - but waking up is a bummer.
Red - thanks for the info - I read that on the site in MArch when this first came up. The site is so large I am glead you found it and cc'd me.
This way I can print just that part too in case an FNA is discussed.
here I am - a typical woke from a dead sleep to "sit up" for a while. Feels like I have a kink in my neck and there is pain/stiffness in my shoulder blade - neck and head. Almost feels like a numbness in my left eye and eyebrow.
a whole 5 hrs of sleep and have to preform 8 hrs at work. This is the worst part - being tired. I can handle the pain I suppose - but waking up is a bummer.
Red - thanks for the info - I read that on the site in MArch when this first came up. The site is so large I am glead you found it and cc'd me.
This way I can print just that part too in case an FNA is discussed.
Stellaaaaaaa, my dear friend.I don't know what to say. As you know, the increased vascularization is not a good sign - neither is the fact that they couldn't identify the margins of one of the nodules. Yeah, don't do another FNA. 898 has good advice about the contrast (probably with a CT scan though) but remember that contrast medium rules out any additional RAI for about 3-6 months.
Talk to a very, very skilled surgeon after you talk to your doctors. Take all of your notes, labs, and scans and discuss what may happen with the surgery - worst case scenarios and best case. Talk about the hormone release and the proximity to nerves and vascular structures. Have him/her walk you through it and explain all of it until you are satisfied. Because we all suffer from brain fog - either take someone else who can listen, write notes, record the conversation or all of the above.
My dear, I'm so sorry for all you are going through. Sending huge hugs and love your way!!
Utah
Talk to a very, very skilled surgeon after you talk to your doctors. Take all of your notes, labs, and scans and discuss what may happen with the surgery - worst case scenarios and best case. Talk about the hormone release and the proximity to nerves and vascular structures. Have him/her walk you through it and explain all of it until you are satisfied. Because we all suffer from brain fog - either take someone else who can listen, write notes, record the conversation or all of the above.
My dear, I'm so sorry for all you are going through. Sending huge hugs and love your way!!
Utah
From what I have read on parathyroid ******* they say that a parathyroid adenoma if suspected when you have high clacium levels. You'd want to know this too...
Parathyroid surgery and parathyroid operations for parathyroid disease.A dangerous trend has emerged in the past few years that you must know about and avoid. Some endocrinologists and/or surgeons will want to prove that what they believe is a parathyroid tumor on a scan is really a parathyroid tumor, so they will biopsy this gland with a needle. This is called a FNA or "fine needle aspiration" biopsy, or "needle biopsy" of the parathyroid gland. THIS IS DANGEROUS AND SHOULD ALMOST NEVER BE DONE. This will cause death to some of the parathyroid tumor, and when it heals with scar tissue (like all tissues heal), the scar tissue can involve the voice box nerve. This will cause tremendous troubles for the surgeon and increases dramatically the chance that you will never talk again. Furthermore, the scarring that occurs will look like cancer under the microscope resulting in the pathologist determining that your parathyroid tumor was a cancer... even when it was not. Some really good endocrinologists can stick a very fine needle (a 27 gauge needle) into the gland with much less chance of causing a problem. However, if you have a biopsy of your parathyroid gland by a doctor that uses an 18 or 20 gauge needle, this is malpractice. We will not accept patients into our clinic for surgery if they have had a parathyroid biopsy using an 18 or 20 gauge needle. If you have had a biopsy of your parathyroid gland with a smaller needle, then we will accept you into our practice but will require you to sign a written statement acknowledging that the needle biopsy greatly increases the difficulty of the operation with increased risks for complications, and increased difficulty for the pathologist. To read our recent publication on this topic in one of the major Endocrinology journals, click here: Diagnostic Aspiration of Parathyroid Adenomas Causes Severe Fibrosis Complicating Surgery and Final Histologic Diagnosis. Thyroid. 2007 Sep 22
It's a very informative site that I regularly study up since I seem to be hypoparathyroid.
I guess it could just be a matter of what and see what the doc says in a few days...
You can freak out..we all do it..so you should join in too! Then we can all go to the virtual pub on Friday and let off all that excess stress hormones!
Good luck!
Parathyroid surgery and parathyroid operations for parathyroid disease.A dangerous trend has emerged in the past few years that you must know about and avoid. Some endocrinologists and/or surgeons will want to prove that what they believe is a parathyroid tumor on a scan is really a parathyroid tumor, so they will biopsy this gland with a needle. This is called a FNA or "fine needle aspiration" biopsy, or "needle biopsy" of the parathyroid gland. THIS IS DANGEROUS AND SHOULD ALMOST NEVER BE DONE. This will cause death to some of the parathyroid tumor, and when it heals with scar tissue (like all tissues heal), the scar tissue can involve the voice box nerve. This will cause tremendous troubles for the surgeon and increases dramatically the chance that you will never talk again. Furthermore, the scarring that occurs will look like cancer under the microscope resulting in the pathologist determining that your parathyroid tumor was a cancer... even when it was not. Some really good endocrinologists can stick a very fine needle (a 27 gauge needle) into the gland with much less chance of causing a problem. However, if you have a biopsy of your parathyroid gland by a doctor that uses an 18 or 20 gauge needle, this is malpractice. We will not accept patients into our clinic for surgery if they have had a parathyroid biopsy using an 18 or 20 gauge needle. If you have had a biopsy of your parathyroid gland with a smaller needle, then we will accept you into our practice but will require you to sign a written statement acknowledging that the needle biopsy greatly increases the difficulty of the operation with increased risks for complications, and increased difficulty for the pathologist. To read our recent publication on this topic in one of the major Endocrinology journals, click here: Diagnostic Aspiration of Parathyroid Adenomas Causes Severe Fibrosis Complicating Surgery and Final Histologic Diagnosis. Thyroid. 2007 Sep 22
It's a very informative site that I regularly study up since I seem to be hypoparathyroid.
I guess it could just be a matter of what and see what the doc says in a few days...
You can freak out..we all do it..so you should join in too! Then we can all go to the virtual pub on Friday and let off all that excess stress hormones!
Good luck!
Thanks
I have been very positive over the whole thing. It just as it always goes. You can never really know anything until your cut wide open and see what's going on.
I like 898's thought about checking the artery for narrowness.
Mommy - did they do that for you? That sounds like a good idea for both of us.
Thanks 898 for all the details - I gotta read it over a couple of times. Lot's of tech logic there :)
Yeah C~
I suppose a trip to Tampa is what I need. That's the best there - for this stuff.
Huge money though. I can bunk with Laura though!
:)
I have been very positive over the whole thing. It just as it always goes. You can never really know anything until your cut wide open and see what's going on.
I like 898's thought about checking the artery for narrowness.
Mommy - did they do that for you? That sounds like a good idea for both of us.
Thanks 898 for all the details - I gotta read it over a couple of times. Lot's of tech logic there :)
Yeah C~
I suppose a trip to Tampa is what I need. That's the best there - for this stuff.
Huge money though. I can bunk with Laura though!
:)
Sorry I too am underinformed...that's y I am here, but ChitChat's thoughts echo mine.
Stay positive and know we are all here rooting for u! :) "selma"
Stay positive and know we are all here rooting for u! :) "selma"
I am here for you but lack significant knowledge .....except stroke sounds like the risk outweighs the benefit thing unless you can get to one of the best facilities in the country and have them re-evaluate things ?
C~
C~
I can't add anything of value, Stella.
I don't know much about parathyroid glands.
898 made very astute observations, and pointed out valid concerns. Thypatient and the others have offered good advice.
I hope you get enough information from various tests to help you make the right decision. I know how upsetting it is to have a problem with no clear solution or path to follow.
You have my sympathy and support, but I don't have any useful suggestions that haven't already been mentioned by estrelinha or Thypatient.
I don't know much about parathyroid glands.
898 made very astute observations, and pointed out valid concerns. Thypatient and the others have offered good advice.
I hope you get enough information from various tests to help you make the right decision. I know how upsetting it is to have a problem with no clear solution or path to follow.
You have my sympathy and support, but I don't have any useful suggestions that haven't already been mentioned by estrelinha or Thypatient.
Keep mentioning at your appt that you still have symptoms, especially the acid problem. My stomach problems were not there constantly either.
"If it was a nodule - I would have no symptoms correct? Unless the nodule was a producer." ~ Honestly, I'm not completely sure on this one.
Let's see what the dr on the 31st says. Maybe he'll agree with your other MD that a wait and see approach might be what's best right now. While that might not be very comforting, it might be best to give whatever's going on time to reveal itself a little more. Probing too much might make matters worse yet.
Keep updating. Take care.
"If it was a nodule - I would have no symptoms correct? Unless the nodule was a producer." ~ Honestly, I'm not completely sure on this one.
Let's see what the dr on the 31st says. Maybe he'll agree with your other MD that a wait and see approach might be what's best right now. While that might not be very comforting, it might be best to give whatever's going on time to reveal itself a little more. Probing too much might make matters worse yet.
Keep updating. Take care.
Stella,
You may opt for another biopsy, but if they will poke into the artery it will not be a lot of fun either;
If you think the artery is narrowed, you may request x-ray with contrast to check this, so if you will opt for surgery at least it will be justified.
You may opt for another biopsy, but if they will poke into the artery it will not be a lot of fun either;
If you think the artery is narrowed, you may request x-ray with contrast to check this, so if you will opt for surgery at least it will be justified.
I wish I had great wisdom for you like you give us. I just don't know enough. I really think you're on the right track though. All of what you say makes perfect sense to me. I was on a parathyroid website (I'll have to find it) that had a chart on calcium levels. It said that even within range levels can signal a problem so I really think they should take a closer look. I have the artery feeling you describe. I get it frequently. So far nothing on my end to suggest why I have it.
Big snuggles to you and like you tell us, press them for answers!!! Hugs ~Kim
Big snuggles to you and like you tell us, press them for answers!!! Hugs ~Kim
Ana
Yes all the parathyroid tests were done in MArch when the radiologist made the notion it could be a parathyroid and not a nodule.
Thy -
If you recall back in March I told you that I had quite a few symptoms of hyperparathyroidism - Acid - cranky - forgetfullness - titer high BP - heart palps acheness.
But since MArch and getting regulated on Armour I find I am feeling much better.
I still have all the symptoms - acid just at occassional times and still forgetful and the others. - but the hyponess is definately better.
That is why I am leaning to think it's a primary/secondary issue.
If it was a nodule - I would have no symptoms correct? Unless the nodule was a producer.
I don't want to get this thing stabbed again if it IS a parathyroid. and no one seems to follow through on checking further into para due to the blood work up - at least back in March.
I highly doubt a PTH was done on my blood work up on Friday. This is a new doc to me recently and the parathyroid issue had not come up in our first visit at all.
I see him on Oct 31 . I will bring in both scans and discuss with him the reports and see what his thoughts are.
I also see the other MD I have had since Feb07. He is the one who has done a great deal of work with me on my Armour - but he seems to be not very sold on this whole nodule/ parathyroid thing. He knows "something is there" - but he's the wait and see informant right now.
Yes all the parathyroid tests were done in MArch when the radiologist made the notion it could be a parathyroid and not a nodule.
Thy -
If you recall back in March I told you that I had quite a few symptoms of hyperparathyroidism - Acid - cranky - forgetfullness - titer high BP - heart palps acheness.
But since MArch and getting regulated on Armour I find I am feeling much better.
I still have all the symptoms - acid just at occassional times and still forgetful and the others. - but the hyponess is definately better.
That is why I am leaning to think it's a primary/secondary issue.
If it was a nodule - I would have no symptoms correct? Unless the nodule was a producer.
I don't want to get this thing stabbed again if it IS a parathyroid. and no one seems to follow through on checking further into para due to the blood work up - at least back in March.
I highly doubt a PTH was done on my blood work up on Friday. This is a new doc to me recently and the parathyroid issue had not come up in our first visit at all.
I see him on Oct 31 . I will bring in both scans and discuss with him the reports and see what his thoughts are.
I also see the other MD I have had since Feb07. He is the one who has done a great deal of work with me on my Armour - but he seems to be not very sold on this whole nodule/ parathyroid thing. He knows "something is there" - but he's the wait and see informant right now.
Oops! Meant to say "...helping to manage 'your' meds,..."
Anyway, also wanted to say that I know you've been dealing with a lot for a long time and I hope you get some clarity on things - one way or the other.
Take care.
Anyway, also wanted to say that I know you've been dealing with a lot for a long time and I hope you get some clarity on things - one way or the other.
Take care.
What about symptoms? Are you having the symptoms of parathyroid disease right now? That would be things like frequent urination and stomach problems. Malaise is another one...so is exhaustion.
Perhaps a basic u/s is something the dr might want to ask for at this point. Does either of the MDs you will see have the capability to do u/s? If not, can they send you to have one? The same thing goes for the blood work. Honestly, follow-up testing of these issues would be a driving factor in who I'd see. If your current MDs focus mainly on helping to manage our meds, I'd make an additional appt for a dr who focuses on the other stuff.
BTW - I know the notion of hormones leaking into the blood and ThyCa are alarming thoughts - but please don't frighten yourself either. I always try to think, ‘Let’s not get scared until we have to.’
AT – Always mention “…I have A-fib now at times…” at every appt. I was told it’s important the dr knows that one.
Good luck.
Perhaps a basic u/s is something the dr might want to ask for at this point. Does either of the MDs you will see have the capability to do u/s? If not, can they send you to have one? The same thing goes for the blood work. Honestly, follow-up testing of these issues would be a driving factor in who I'd see. If your current MDs focus mainly on helping to manage our meds, I'd make an additional appt for a dr who focuses on the other stuff.
BTW - I know the notion of hormones leaking into the blood and ThyCa are alarming thoughts - but please don't frighten yourself either. I always try to think, ‘Let’s not get scared until we have to.’
AT – Always mention “…I have A-fib now at times…” at every appt. I was told it’s important the dr knows that one.
Good luck.
Stella you have a difficult question, may be someone here can advice you about your FNA, but about you parathyroid, I'm sure you have also tested your PTH, phosphorus in serum and 1,25 (OH)2D . I know that Sestamibi with SPECT scan are minimal non invasive techniques to look for solitare adenoma.
just freaking out that I am answering to many other questions and mine is falling off the board.
sorry - but I rebumped it back up here.
sorry - but I rebumped it back up here.
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