It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Endocrine Disorders Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 12-15-2012, 11:11 PM   #1
Newbie
(female)
 
Join Date: Dec 2012
Posts: 4
ClaireC HB User
Unhappy Parathyroid and Negative Ultrasound, Help!

Hey all, I'll try to make it quick. Got sent to an ENT surgeon by my endocrinologist last month after him telling me I DEFINITELY had a parathyroid adenoma, because there was no way my calcium and PTH would look like that otherwise. Went to the ENT, who said he wanted to do an ultrasound first and then he'd schedule me for surgery. I was thinking I was finally going to have my health problems cured (I've been seeing various doctors about this for a year now...)

Then: negative ultrasound. It was performed by a lab tech, who said my glands looked normal. The ENT doctor also said that after. He said my high-PTH high-calcium reading could have been an "isolated case" and that "these things move around all the time."

So I went back and checked my earlier labs (the endo had been monitoring my calcium and PTH for a while) and here are the numbers:

May 2012 PTH 55, Calcium 9.7
May 2012 PTH 46, Calcium 10.6
June 2012 PTH 60, Calcium 10.6
July 2012 PTH 44, Calcium 10.6
Oct 2012 PTH 81, Calcium 10.7


The calcium is almost always high. However, depending on what scale you're using (and I am assuming the ENT surgeon is using the "below 65 = normal" scale) my PTH has never been high except for this last test, it's just been high-normal.

On the other hand, if my calcium is high, shouldn't my PTH be LOW most of the time?

EDIT: I should also add that my endocrinologist ordered a sensamibi scan earlier in the year but that also was a negative. He was treating me for low vitamin D also but that didn't help.

Please tell me I'm not crazy (or if I am crazy, be gentle ). I'm about to try to set up with another surgeon, but I don't want to go through all that again and be told there's nothing wrong yet another time...

Last edited by ClaireC; 12-15-2012 at 11:18 PM.

 
Reply With Quote
Sponsors Lightbulb
   
Old 01-04-2013, 02:25 PM   #2
Newbie
(female)
 
Join Date: Jan 2013
Location: Portland Oregon
Posts: 8
dahliadawnie HB User
Re: Parathyroid and Negative Ultrasound, Help!

Hi Claire,
You aren't crazy. You most likely have a tumor on one of your four Parathyroid Glands. I just had one removed. There is only one reason your calcium is in the 10, 11 and 12 range, it's a tumor. My PTH was BARELY over normal. And sometimes the PTH is totally in the 'norm' range. Still a tumor. As regards a negative scan, a very high percentage of these tumors are just on the back side of your thyroid and it is a 50/50 chance that any scan will show it because of where it is located. Sadly, most endocrinologists are very uneducated about the parathyroid and misdiagnose it. Often they'll say 'your calcium is a little high, but we'll monitor it'. No such thing. If it's high, there's a tumor and your are not getting enough calcium in your bones~all is being flushed out in your urine. Eventually over time, osteoporosis will set in.


<Administrator removed disallowed info>


Don't let the negative scan stop you from getting well. Dawn

 
Reply With Quote
The Following User Says Thank You to dahliadawnie For This Useful Post:
ClaireC (03-08-2013)
Old 02-19-2013, 11:39 AM   #3
Member
(female)
 
Join Date: Jul 2012
Location: chicago burbs
Posts: 61
kselibrary76 HB Userkselibrary76 HB User
Re: Parathyroid and Negative Ultrasound, Help!

Quote:
Originally Posted by ClaireC View Post
Hey all, I'll try to make it quick. Got sent to an ENT surgeon by my endocrinologist last month after him telling me I DEFINITELY had a parathyroid adenoma, because there was no way my calcium and PTH would look like that otherwise. Went to the ENT, who said he wanted to do an ultrasound first and then he'd schedule me for surgery. I was thinking I was finally going to have my health problems cured (I've been seeing various doctors about this for a year now...)

Then: negative ultrasound. It was performed by a lab tech, who said my glands looked normal. The ENT doctor also said that after. He said my high-PTH high-calcium reading could have been an "isolated case" and that "these things move around all the time."

So I went back and checked my earlier labs (the endo had been monitoring my calcium and PTH for a while) and here are the numbers:

May 2012 PTH 55, Calcium 9.7
May 2012 PTH 46, Calcium 10.6
June 2012 PTH 60, Calcium 10.6
July 2012 PTH 44, Calcium 10.6
Oct 2012 PTH 81, Calcium 10.7


The calcium is almost always high. However, depending on what scale you're using (and I am assuming the ENT surgeon is using the "below 65 = normal" scale) my PTH has never been high except for this last test, it's just been high-normal.

On the other hand, if my calcium is high, shouldn't my PTH be LOW most of the time?

EDIT: I should also add that my endocrinologist ordered a sensamibi scan earlier in the year but that also was a negative. He was treating me for low vitamin D also but that didn't help.

Please tell me I'm not crazy (or if I am crazy, be gentle ). I'm about to try to set up with another surgeon, but I don't want to go through all that again and be told there's nothing wrong yet another time...
You can't bank on scans.

Your parathyroids should sit behind your thyroid (sometimes they do not) and they cannot sometimes get a good reading on them ... also you can have something very minor on one or more of your glands that just wouldnt be seen.

My ultrasound showed a largish nodule that looked to be peeking from behind the thyroid but my sestambi showed nothing.

I have surgery next Tuesday.

I have been hypercalcemic for 6 years.
I have yet to have a high PTH

IF I have high calcium it would follow, says my doc that my PTH would be low...it isn't it is normal.

Something is wrong.

I will try and come back on and tell you what happens.

I am happily anxious for this surgery as I've had bone pain since last April in my legs and arms, hair loss, itching, muscle aches...enough, you know?

 
Reply With Quote
Old 02-19-2013, 11:58 AM   #4
Newbie
(female)
 
Join Date: Jan 2013
Location: Portland Oregon
Posts: 8
dahliadawnie HB User
Re: Parathyroid and Negative Ultrasound, Help!

Claire,
You're not crazy.
Your Oct 2012 PTH 81, Calcium 10.7 bloodwork says you have a tumor.
My PTH was only 67 (2 pts above normal) and my tumor was producing 4444 hormone. Often the scan is negative because more commonly the tumor sits on the back side of the thyroid and is hard to distinguish as different from it.

Ksel: GOOD LUCK! You'll be feeling better soon!

 
Reply With Quote
Old 02-19-2013, 06:50 PM   #5
Junior Member
(female)
 
Join Date: Feb 2013
Location: Miami, FL
Posts: 11
Flip57 HB User
Re: Parathyroid and Negative Ultrasound, Help!

If you want an education go to parathyroid.com, the website of the Norman Parathyroid Center, located in Tampa General Hospital. I am not saying you have to go there, but people do go there from all over the world. I had surgery there in January..a great experience, I highly recommend their website and their center.

 
Reply With Quote
Old 02-19-2013, 08:32 PM   #6
Newbie
(female)
 
Join Date: Jan 2013
Location: Portland Oregon
Posts: 8
dahliadawnie HB User
Re: Parathyroid and Negative Ultrasound, Help!

Flip: I had my surgery there in November! great experience here too.

 
Reply With Quote
Old 02-20-2013, 09:04 AM   #7
Member
(female)
 
Join Date: Jul 2012
Location: chicago burbs
Posts: 61
kselibrary76 HB Userkselibrary76 HB User
Re: Parathyroid and Negative Ultrasound, Help!

Quote:
Originally Posted by dahliadawnie View Post
Claire,
You're not crazy.
Your Oct 2012 PTH 81, Calcium 10.7 bloodwork says you have a tumor.
My PTH was only 67 (2 pts above normal) and my tumor was producing 4444 hormone. Often the scan is negative because more commonly the tumor sits on the back side of the thyroid and is hard to distinguish as different from it.

Ksel: GOOD LUCK! You'll be feeling better soon!
From your fingers to God's eyes

I hope I am feeling better soon. My bone pain is ridiculous. shin's are the worse although I get it in my arms as well. I also get the added bonus of itching. UGH.

Went for me preop today. Everything went well. Surgery Tuesday.

I had thought of Dr. Norman as an option if the docs didn't do something in the next bit...why some of these docs wait and wait and wait is beyond me.

My own surgeon has quoted Dr. Norman's "stuff" to me.

If it is high, it is high...why wait til it is HIGHER? Yep...I'm anxious to have this over with.

Mine is exploratory and I will have the "big cut" unfortunately as they are looking at thyroid as well. Not looking forward to the "golf ball" thing that crops up.

I wonder if there are any post op things people did that helped ease that or not?

I read you should sleep propped up for a bit. Someone said vit D on the scar, others did derma something.

Again, I just want it done and my bone pain to stop. If that happens I'm going to squeeze that doc in the biggest hug ever!

 
Reply With Quote
Old 02-20-2013, 09:09 AM   #8
Newbie
(female)
 
Join Date: Jan 2013
Location: Portland Oregon
Posts: 8
dahliadawnie HB User
Re: Parathyroid and Negative Ultrasound, Help!

My pain was not quite as yours so much as more like muscle-ism. Like my insides all felt tender and ached. Walked like an 80 year old. Pathetic. And once you are done, it is really almost immediate. YOU WILL BE DANCING with joy afterward! God bless your journey!

 
Reply With Quote
Old 02-20-2013, 09:16 AM   #9
Member
(female)
 
Join Date: Jul 2012
Location: chicago burbs
Posts: 61
kselibrary76 HB Userkselibrary76 HB User
Re: Parathyroid and Negative Ultrasound, Help!

Quote:
Originally Posted by dahliadawnie View Post
My pain was not quite as yours so much as more like muscle-ism. Like my insides all felt tender and ached. Walked like an 80 year old. Pathetic. And once you are done, it is really almost immediate. YOU WILL BE DANCING with joy afterward! God bless your journey!
I walk like an old lady too. I stand up by pushing up from where I am sitting...then stand there until everything seems to get in... place??? and then I stumble around to where I need to be.

I call it "getting me pins under me".

I've read that the muscle and bone pain go quickly

I have one day, maybe two in the hospital...they want to watch my calcium levels. They have been so high for so long they want to m ake sure I don't have a sudden drop.

Again, your posts have been of great help to me, thank you.

Can I ask what your throat felt like after...inside? Like you had a pill stuck? Weird to turn your head? Anything?

 
Reply With Quote
Old 02-20-2013, 09:50 AM   #10
Newbie
(female)
 
Join Date: Jan 2013
Location: Portland Oregon
Posts: 8
dahliadawnie HB User
Re: Parathyroid and Negative Ultrasound, Help!

My surgery was just to remove the tumor, and it was located a little deeper than is typical, toward the spine in the back. So the cut he made was a little lower and wider. I was sore but I took advil the first few days and it was not bad at all. We went over to Clearwater beach the following day to wander around like tourists. Yes it was a little like a pill was stuck! And that part stayed for a while, more than a couple weeks as I recall. But then it was gone. And it wasn't painful at all. I would love to hear from you on how you do! I'm on 2000 of calcium that they send you home with and tell you to take for a long while. But my blood work came back after two months at 9.9 for calcium! yip!

 
Reply With Quote
Old 02-20-2013, 10:50 AM   #11
Junior Member
(female)
 
Join Date: Feb 2013
Location: Miami, FL
Posts: 11
Flip57 HB User
Re: Parathyroid and Negative Ultrasound, Help!

Don't worry about the golf ball near the incision...I wore a neck scarf for three weeks, People told me how fashionable I looked! (Ha ha). it is over five weeks now and it is down, no more scarves. I used vitamin E oil a few times a day and my incision looks really good. Cream with aloe was also suggested to me. Don't worry about it..the surgery itself is what's important..and you should be a new person, but maybe not overnight. Be patient.

 
Reply With Quote
Old 02-20-2013, 11:00 AM   #12
Junior Member
(female)
 
Join Date: Feb 2013
Location: Miami, FL
Posts: 11
Flip57 HB User
Re: Parathyroid and Negative Ultrasound, Help!

As for the throat, I had difficulty swallowing for almost three weeks..that is now gone as well. I NEVER had any pain after surgery or during recuperation.

 
Reply With Quote
Old 02-20-2013, 01:56 PM   #13
Member
(female)
 
Join Date: Jul 2012
Location: chicago burbs
Posts: 61
kselibrary76 HB Userkselibrary76 HB User
Re: Parathyroid and Negative Ultrasound, Help!

Thank you all.

I'm not nervous about the surgery or the afterwards.

I just like to know what I'm looking at or potentially looking at.

As far as how it looks, I don't care if everyone sees a scar Battle wounds that I can show off as a victor...or that's how I'm looking at it anyway.

I looked up thyroid scars on the internet the other day and cracked up when I saw one that someone had glued two little eyes and a nose over

 
Reply With Quote
Old 03-01-2013, 05:16 AM   #14
Member
(female)
 
Join Date: Jul 2012
Location: chicago burbs
Posts: 61
kselibrary76 HB Userkselibrary76 HB User
Re: Parathyroid and Negative Ultrasound, Help!

Post surgery update

I said I'd try to get back here and do an update. Surgery was Tuesday, it is now Friday...and here are my thoughts.

1. Apparently they use a different intibation tube for this surgery and it took forever to get mine in, so...I've the sore throat from Hades.

2. The surgeon could only find 2, possibly 3 glands, the fourth one was not to be seen. He removed the two he found as he feels that I was hyperplastic.

3. He found, on the other side, what he believes to be the third, he could not determine it very clearly as it was in a mass of tissue and fat that should not have looked like that or been there. It was actually endangering my vocalcords.

4. This all depressed me like there is not tomorrow. I wanted him to find adenoma, and boom...fix it.

5. Not knowing if he got what he needed to is driving me a tad nuts, but I'm trying to deal with it.

6. After surgery Calcium down to 9 then 8.5, then stable at 9. We are waiting for yesterdays tests today.

7. I get numbness around my lips and in the roof of my mouth and muscle cramps in my arms when the calcium seems to dip too low. We are hoping that will stablize and watching it closely.

8. Leg (shin) bone pain is down 70%. Let us all happy dance.

9. Sleep. I am actually sleeping fully and well.

10. Itching is gone.

11. Muscle cramps in arms are wicked though. I'm hoping this all straightens out as the calcium levels get whatever they need to get.

12. I'm glad I did this surgery, I'm still anxious that I may have to do some sort of repeat because if it is hyperplastic and he ended up leaving 2 in there we may be looking at the same deal down the road (putting on my positive hat now though)

13. DID YOU SEE HOW MUCH LESS BONE PAIN I HAVE???? mental clarity is up tons as well.

woot.

 
Reply With Quote
Old 03-01-2013, 05:30 AM   #15
Junior Member
(female)
 
Join Date: Feb 2013
Location: Miami, FL
Posts: 11
Flip57 HB User
Re: Parathyroid and Negative Ultrasound, Help!

What is most important and don't lose sight of it.....your CALCIUM IS DOWN!
which means something right was done and the surgery was a success.
When I got that tingling in my fingertips, I was advised to take a Citracal 600/D immediately.
It only happened a few times but seemed to work. Being too low is not good, so stay on top of those symptoms.
I have good news to report...my seven week blood work shows my calcium and PT hormone level within normal range. After almost 10 years of elevated calcium, I am very happy!
I wish you a good recuperation period...my major problem was not sleeping well and having mood swings, but that is slowly disappearing. Be patient!

 
Reply With Quote
Reply Reply

Similar Threads
Thread Thread Starter Board Replies Last Post
I have a Parathyroid Question. My 3rd one is going out, will be 3rd surgery. Ann 2010 Endocrine Disorders 4 05-19-2012 07:13 AM
post op parathyroid walkingmedley Endocrine Disorders 0 12-07-2011 07:39 PM
Parathyroid diagnosis/Dr Los Angeles? anniela Endocrine Disorders 1 11-20-2011 12:56 PM
Need parathyroid surgeon in Texas ThirstyMagnolia Endocrine Disorders 4 09-19-2011 10:57 AM
Anyone Have Parathyroid surgery? keech Endocrine Disorders 8 07-02-2011 04:35 PM

Tags
hyperparathyroidism, pth, ultrasound



Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



darlpf (2), dahliadawnie (2), Stretch1one (2), kselibrary76 (2), pemmy (1), trakster (1), roisindubh (1), NorCalCWG (1), KYAnn (1), GirlySoGroovy (1)

Site Wide Totals

teteri66 (1167), MSJayhawk (1000), Apollo123 (899), Titchou (836), janewhite1 (823), Gabriel (758), ladybud (747), sammy64 (668), midwest1 (665), BlueSkies14 (610)



All times are GMT -7. The time now is 08:11 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!