parathyroid correlation??

[alabamajane]

I had a thryroidectomy with one parathyroid gland removed in 2004. In my research I have found that one of the risk factors for ANs is a parathyroid edema.. Just wondering if anyone else has encountered this issue. I did not even know anything about the parathyroid gland,( of which we have 4, two on each side of throat),,, untill my thyroid cancer and in removing it Dr found enlarged parathyroid gland. It just so happens that gland was also on the right side which correlates to AN side, I was diagnosed with the AN in 2008. Just wondering...I have appt. with new Dr. next Tuesday and may mention this to him to see what he says,, it won't affect surgery choice or anything else,, just interesting..

[Anasazi42]

Hi Alabamajane,

I'm not sure about the parathyroid connection, but I am hypothyroid. I started taking Levoxyl in 1999, and am now on Armour thyroid. I need to get myself checked out again, since I had to put everything on hold once this AN was found and surgery scheduled. I had a 3 cm AN removed (retrosigmoid) on May 12 of this year. I have always wondered about the endocrine system and about everything it really affects. I haven't had a chance to discuss everything that has happened to me with my new endocrinologist. Hopefully, he'll have something interesting to say about any connection once I make an appt. I'll keep you posted.

[LisaM]

Interested in this thread, so I'm posting to be connected to it.   Don't know anything  about Parathyroid glands, but I had a pituitary tumor that was secreting prolactin and creating havoc in my endocrine system.  That tumor disappeared after 12 years of taking a drug called parlodel... and a major lifestyle change.

Reading this post made remember that I had my tonsils out when I was a teenager.  I've always wondered if removing tonsils is a good idea.

[CHD63]

I, as well, am interested in this thread.

I had my tonsils and adenoids removed when I was 13 years old.  At that time, the recommendation was to give me "radium" treatments to prevent regrowth of the adenoids and to reduce ear infections.  I now know it was called nasopharyngeal irradiation, developed in the 1930s by Johns Hopkins.  It was massive doses of radium delivered directly into the nostrils.  I can clearly remember the burning of the rods, sitting in a small cubicle by myself.  Fast forward to 20 years later ..... I learned that those of us who had received this treatment were at high risk for thyroid cancer.  My PCP monitored me for many years and I have never developed thyroid cancer.  Fast forward another 30 years to my diagnosis of an AN.  Just recently I have learned that ionizing radiation is the only known cause for development of acoustic neuromas.

Do not know if there is any connection or not, but about 45 years ago, my thyroid function took a nosedive and I was on Synthroid for many years.  At some point ..... and I do not remember when or why ...... I was taken off any thyroid meds and my function studies have been normal ever since.

In light of this discussion, I am wondering about any correlation with either the thyroid or the parathyroid function with formation of acoustic neuromas.

Guess I should have been a researcher in my first career ...... I find this all very fascinating.

Clarice

[Kaybo]

I, too, want to keep up with this thread!  I had my AN surgery in 1995 and my thyroid totally removed in 2006.  I did not have cancer but several nodules on both sides.  The Dr said that we could leave them, but the "might become a bit unsightly" - HELLO??  Had he looked at my face lately??  I didn't think I needed anything else "unsightly" going on there!!  LOL!!    Both my mother and grandmother had thyroid issues/removal so I knew that it was only a matter of time...and since my body seems to grow weird tumors, I should go ahead & get it removed.  That, & my hubs and I decided I would probably bounce back better from surgery at 35 than 45 or 55!  As far as surgeries go (& I've had quite a few!), it is the one I would recommend - it was by FAR the easiest to get over (besides eye stuff)!!    Getting the dosage of Synthroid was a little tougher, but I have been on the same little, pink pills for about 5 years now (same dosage as my sweet mama - convenient if I forget mine or run out! - that only happened once!!).

K   

[alabamajane]

thanks for responding ..
clarice,, I did not have tonsil issues as a child and don't remember any radiation treatments either,, but have heard of  the connections... I did notice on the Mayoclinic website that "unconfirmed risk factors" for AN was the parathyroid adenoma,,( hence my post here to see if others have had this issue)  too much loud noise exposure,, exposure to childhood radiation treatments and of course,, the dreaded,, excessive cell phone usage,, which we know ANA does not agree....

Kaybo,, as far as having thyroid removed just due to nodules,, I had several nodules in my thyroid that Dr and I watched for almost 25 yrs with no additional issues nor were they ever noticeable to others other than looking like another "Adam's apple" if they even noticed, and they never changed size,, just one of them calcified and on biopsy the cancer was found,, it was suggested that I take a dose of Synthroid every day while in the watching stage,, however,, I was in college and did not want to "have" to take any daily meds (b.c. included...) so I never did.. I have however seen people with goiters that were very noticeable. Surgery was never a recommendation until the cancer was detected.. so I don't think someone should necessarily be scared that nodules would "become" unsightly just on their own although I am not a Dr. just from personal experience over about 25 yrs of dealing with nodules...
just my thoughts on this thread,, hope anyone else with experiences will post.. it is another interesting issues with these wonderful ANs.....

[Anasazi42]

This is interesting, because when I was very young, I must have been 8 or 9, I had the iodine imaging to detect whether i had a thyroid condition. I think they used iodine 131 because I think that is the isotope used to detect problems with the thyroid. Since iodine 131 is radioactive and has a half-life of 8 days, it is linked to cancer and tumor growth. I know that they had me start thyroid pills after that test, but for whatever reason, my parents didn't make me continue taking it, and I stopped. Fast-forward to spring 1999 and I'm 33, and I couldn't shake a cold I had since the winter and i was feeling achy, foggy, and depressed. I knew something was wrong with me, and after our GP kept telling me I was fine, and nothing was wrong with me, I insisted that he do a full blood work up. I felt bad enough that I knew it wasn't my imagination. A person doesn't normally feel like they're running a fever EVERY night for months. I also kept feeling the strangest sense of deja-vu. I can!t explain it. I had the feeling that there was poison running through my veins. Thats the closest explanation to how i felt. So, the same doctor who kept telling me nothing was wrong was telling me I was hypothyroid after he got the results back from the lab. Let's just say we don't go to him anymore. I know doctors are human and make mistakes but work with me. When I tell you I'm feeling something, don't tell me I'm not really feeling it and that nothing is wrong. After I started taking the correct dosage of Levoxyl my symptoms went away.

Now I find out that I've been harboring an acoustic neuroma for probably the same amount of time. I had it long enough that it grew to 3+ cm (I need to get the exact dimensions from my doctor. My ENT told me the measurements when he broke the news to me, but I was a bit freaked out and didn't register what he was saying). I still have my tonsils though, but I did have many ear infections as a kid. My parents knew about the risks of removing the tonsils and getting all sorts of other problems, that I kept them in. They figured they were put in the body for a reason, as a filter of some sort.

So perhaps what we all have in common are endocrine problems. Maybe that's a connection worth exploring.

[Kaybo]

I wasn't completely clear in my response...aside from the "unsightly" comment, the Dr said that they "could" very easily turn cancerous at some point. With my history of growing strange & rare tumors AND the hereditary issues, Dave & I decided we would just rather get it over & done with!!

K 

[alabamajane]

Anasazi,, I don't know , not being a Dr. , what you had done as a child however, when I was admitted after thyroid surgery, I was given a dose of I-131 radioactive iodine to kill any remaining thyroid tissue that may have been left behind. It is the type iodine as you say that stays in body for several days..and had to wait until enough of it had left my body to be released from hospital and could not be around sick/impaired people and young children for about a week as to not expose them to the radiation. Pretty bad stuff.. but no lingering effects from it. I had had several CT scans of thyroid over time where I was given a drug through IV to enhance the images but it was not radioactive as I was not quarantined...
anyway ,, you are right I believe,, in thinking there must be a connection to the endocrine system in body that maybe has not been explored... let's keep "exploring"!

K...I see.. I probably would have done the same thing in your situation.. I did not have, to my knowledge (except for this "bugger") have any other tumor experiences.. so watching was conservative thing to do for me.. and as you see,, one DID turn cancerous after all these years.. but it is very "easy" cancer to beat...........

[Cheryl C]

I'm having a "hmmmm" moment as I've happened on to this thread.  For what it's worth, here's my story:  I had a partial thyroidectomy 31 years ago.  My symptoms at that time were a feeling of being on the outside, looking in, but never in all these years did it show a change in my blood level.  An alert doctor felt it was swollen and a quarter-size tumor was removed, along with half my thyroid.  Three years ago my golfball-sized AN was discovered and the resulting surgery.  You all know too well the rest of that story.  This year things were finally "uneventful enough" that I scheduled the recommended colonoscopy, and the good Lord just led the doctor to scope on into my small intestine and found a bb-sized, rare cancerous tumor.  More scans and testing revealed a totally "unrelated" cancer in my remaining thyroid, 1/2 the size of a bb, surrounded by large benign tumors.  The surgeon removed all tumors, all thyroid (and I underwent the radiated iodine), and the hope is that that is the end of the cancer. 
Thank you for all these posts.  I'm going to mention this to my oncologist at the next checkup.  Wow.

[Anasazi42]

Hi Cheryl,

Your story really makes me wonder about the endocrine link to cancer and tumors. My sister-in-law is also hypothyroid and was diagnosed with breast cancer a few years ago. I'm really going to be more vigilant with my body now. I'm due for my colonscopy and I've got my mammogram coming due as well. We know our bodies better than anyone else, and we have to be grateful that this knowledge and insistence that things weren't right probably saved our lives. Be well.

I'm having a "hmmmm" moment as I've happened on to this thread.  For what it's worth, here's my story:  I had a partial thyroidectomy 31 years ago.  My symptoms at that time were a feeling of being on the outside, looking in, but never in all these years did it show a change in my blood level.  An alert doctor felt it was swollen and a quarter-size tumor was removed, along with half my thyroid.  Three years ago my golfball-sized AN was discovered and the resulting surgery.  You all know too well the rest of that story.  This year things were finally "uneventful enough" that I scheduled the recommended colonoscopy, and the good Lord just led the doctor to scope on into my small intestine and found a bb-sized, rare cancerous tumor.  More scans and testing revealed a totally "unrelated" cancer in my remaining thyroid, 1/2 the size of a bb, surrounded by large benign tumors.  The surgeon removed all tumors, all thyroid (and I underwent the radiated iodine), and the hope is that that is the end of the cancer. 
Thank you for all these posts.  I'm going to mention this to my oncologist at the next checkup.  Wow.

[alabamajane]

I just had a second opinion appt yesterday with new Dr. and happened to mention the thyroidectomy/parathyroid adenoma to him and asked if he knew of or had encountered any other instances of it or a correlation.. He said he had not... so don't know,, maybe others will post of their experiences with endocrine system issues.. this is interesting..

[Seamar]

I had a parathyroidectomy 20 years ago due to an adenoma which was causing severe constipation and stomach pain.  I thought I was just getting old. My vigilant PC checked my calcium level, which was elevated, and sent me to a head and neck surgeon.  After having a CT scan and seeing an endocronologist for verification, I had the surgery, and, voila!, what a difference!  Post surgery was no picnic because the piece of parathyroid placed in the side of my neck would not kick in and my potassium would drop to dangerous levels throwing me into a seizure sort of state. Ugh!  I had almost forgotten that episode in my life. 

Anyway, I have been fine in that department ever since; but, I too, read somewhere about a possible correlation between adenoma of the parathyroid and AN.  Who knew? 

[Ellen K]

I had a tonsillectomy in 1970 or 1971, when I was five. That seems to have been the last years that radium treatments were used. Clarice, do you know if there is a way to find out if radium was used?  I was so young that I don't remember much.

[CHD63]

Hi Ellen .....

As you have apparently discovered (and I, as well), nasopharyngeal radium irradiation treatments were done from approximately 1940 to 1970.  That does not mean that every child was irradiated after a tonsillectomy during those years.  My sister did not have it after hers, for instance.  I was 13 so I remember it very clearly (burned in my nose horribly).

About 25 years ago I read an article about the risk of thyroid cancer in those patients having received the treatments.  I told my doctor I wanted to be checked so he did and nothing was found.  My doctors since then have usually monitored it since then through blood tests and manually feeling my thyroid for any growth.  All has remained normal.

Since the Internet was not readily available 25 years ago, I attempted to find out about the strength of these treatments by writing letters and researching the library.  I determined that the doctor who had removed my tonsils and ordered the treatment was no longer in the town where it was done (I was not either.)  I attempted to contact him in his new location (the clinic told me he took all records with him), but could never get an answer.

We now know that there is a correlation between these treatments and the formation of acoustic neuromas.  In my case, around 50 years later.

My suggestion to you would be to contact the doctor who removed your tonsils or family members who might remember if the treatments were ordered for you or not.  I would think chances were pretty high that you did not have them if it was 1970 or 1971.

My current feeling is ..... with any new treatment/drug, too many long-term results are not known during the required testing period. Therefore, my parents allowed for this thinking it would help me, not knowing the long-term consequences.  Both of my parents were deceased before I was diagnosed and I am so grateful they never knew what happened.

Bottom line:  you should find out, if possible, whether you had the treatments but only because you will need to be monitored more closely.

Hope that is helpful.  PM me if you have other, more specific questions.  ..... and let us know what you find out.  Thanks.

Clarice