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Old 03-01-2013, 07:30 AM   #16
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Re: Parathyroid and Negative Ultrasound, Help!

There may have been an adenoma in the 3rd ? gland that didn't look normal. That should be clearer when the pathology report comes back. You might want a copy of it. Many people have parathyroid hyperplasia only without adenomas that cause their high PTH and high calcium. High of both goes together because the PTH causes calcium to come out of bones and into blood, hence the high blood calcium, osteoporosis and kidney stones from high urinary calcium. I think you are "fixed" since your Calcium came down so well and many symptoms are improved. As for the scar, a good excuse to treat yourself to some new necklaces that will cover it. The ones with an adjustable length chain work well to get it just at the right level. My scar bothered me a lot and I found that helped me mentally. Just look for ones that aren't rough or scratchy and wait for it to heal completely.

 
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Old 03-01-2013, 08:07 AM   #17
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Re: Parathyroid and Negative Ultrasound, Help!

WOOOOT !!!
calcium numbers say it all, agree with ladybug.
it can take awhile for your calcium to level so no worries about still having some issues.
That is quite a list of improvement, so much less bone pain, you are sleeping. Wow. You got your life back! VERY happy for you!!! tx for update!

 
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Old 03-01-2013, 03:07 PM   #18
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Re: Parathyroid and Negative Ultrasound, Help!

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Originally Posted by dahliadawnie View Post
WOOOOT !!!
calcium numbers say it all, agree with ladybug.
it can take awhile for your calcium to level so no worries about still having some issues.
That is quite a list of improvement, so much less bone pain, you are sleeping. Wow. You got your life back! VERY happy for you!!! tx for update!
You all rock.

At the time of surgery my PTH was normal, my Calcium was 10.8.

During surgery my PTH jumped (he told me when I was buzzed as a son of a gun what that was, but I don't remember) and my calcium went higher yet.

6 hours post surgery I had a calcium of 9
12 hours post surgery I had a calcium of 8.5
24 hours after surgery my calcium is 9.5

I am waiting to hear from the surgeon tonight to get my ok to drive and to hear when he wants the next calcium drawn. Let's hope it stops at 9.5

I am taking 2 oscal tabs 2 x per day.

As for my scar, I let it shine. Stitches and all. Jim took me to the movies today to get me out. I actually had two people ask me if I had had a tracheotomy

I did buy some scarves and plan to give them a fashion go when I go back to work Monday.

My shins still ache, but aching is better than BONE FREAKING pain. I was told today by the nurse that the aching should lessen as well.

I've almost stopped clearing my throat (that is due to the trouble with intibation) so...more sleep, less pain, so what my mouth is numb a little bit, that may stop and I'm so glad I did this.

thank you ALL for your thoughts and support.

 
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Old 03-08-2013, 08:56 AM   #19
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Talking Re: Parathyroid and Negative Ultrasound, Help!

Hi all, this is the OP.

Thanks for the replies Turns out you were right. After posting that I booked another surgeon for a second opinion. This one had an ultrasound machine right there in her office and found a tumor within about 20 seconds. She then ordered a sestamibi, which confirmed it. I had the tumor out this week and I'm doing well So for anyone else who is reading this, NEVER LISTEN to a doctor who tells you that a negative ultrasound means anything at all!

I'm still really mad at the first surgeon... I could have avoided several months of fatigue, depression and terrible bone pain if he had actually known how to do his job. On the other hand, I'm glad that the person who ended up doing the surgery seemed to actually know what they were doing. Who knows, the first guy might have ended up taking out the wrong gland

kselibrary76, if you're worried about scarring you might want to check out silicone scar sheets once the stitches are gone and it's healed up a bit... you can buy them on Amazon, and you just stick them over the scar when you're asleep at night and within a few weeks it has softened and faded. I've used them before on other scars and they're really good.

I hope that all made sense, I'm still on a bit of vicodin from the surgery

 
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Old 03-08-2013, 09:00 AM   #20
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Re: Parathyroid and Negative Ultrasound, Help!

Claire that is great news! So glad for you. Just in time to have a GREAT Summer! I remember the first time I worked in the yard after having my tumor gone. I'd been working away for a couple hours and it hit me. I turned to my hubby and said, 'do you realize prior to surgery, I would have lasted 10 minutes and had to go inside?" I was tearing up. IT'S GOOD TO GET YOUR LIFE BACK ! have a great llife Claire!

 
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Old 03-08-2013, 09:33 AM   #21
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Re: Parathyroid and Negative Ultrasound, Help!

So happy you got taken proper care of and are on your way to healing and feeling better! It will be great to see your calcium levels under 10 post-op and know you are rid of the problem! Good going.

 
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Old 04-29-2013, 06:19 PM   #22
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Re: Parathyroid and Negative Ultrasound, Help!

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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...
Hi Claire
I am going through something simular to what you are. My calcuim level first came back at 17.6 and the second was 16.5 and it has not drop below 15.6. My levels are way to high. My Dr sent me to a surgen too, saying I had Parathyroid tummer, well surgen did a nuc scan and said there is no tummer and my glades and levels where normal...well next they tested me for lemphoma..that came back neg. They did find cyst in my breast 5 to be exact and cyst on my thyroid. My mom had thyroid desease and now has stage 3 breast cancer, but I can't seem to get them to listen to me. I'm in pain every day. They just keep telling me that they don't know why...well I go again tomorrow to dr....I am going to demand an answer...don't give up and be pushy and if they don't give you answers get new dr...I'm going to..good luck.

Last edited by pooh68dl; 04-29-2013 at 06:32 PM. Reason: spelling mistakes

 
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Old 04-29-2013, 09:20 PM   #23
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Re: Parathyroid and Negative Ultrasound, Help!

Pooh don't give up. Keep pushing until you get what you need. . .

 
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Old 04-30-2013, 10:22 AM   #24
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Re: Parathyroid and Negative Ultrasound, Help!

Quote:
Originally Posted by ClaireC View Post
Hi all, this is the OP.

Thanks for the replies Turns out you were right. After posting that I booked another surgeon for a second opinion. This one had an ultrasound machine right there in her office and found a tumor within about 20 seconds. She then ordered a sestamibi, which confirmed it. I had the tumor out this week and I'm doing well So for anyone else who is reading this, NEVER LISTEN to a doctor who tells you that a negative ultrasound means anything at all!

I'm still really mad at the first surgeon... I could have avoided several months of fatigue, depression and terrible bone pain if he had actually known how to do his job. On the other hand, I'm glad that the person who ended up doing the surgery seemed to actually know what they were doing. Who knows, the first guy might have ended up taking out the wrong gland

kselibrary76, if you're worried about scarring you might want to check out silicone scar sheets once the stitches are gone and it's healed up a bit... you can buy them on Amazon, and you just stick them over the scar when you're asleep at night and within a few weeks it has softened and faded. I've used them before on other scars and they're really good.

I hope that all made sense, I'm still on a bit of vicodin from the surgery
I hope this makes you all smile. It cracks me the heck up.

I go to see the endocrin for my post surgery check up and he looks at me and says, "K! He did a phenomenal job. That scar is so deep in the deepest crease of your neck you can hardly see it." I suppose that was a compliment. I was choking with laughter.

I still have a little bump to swallow around, or that is what it feels like, and still have some minor bone pain (they think that is because I got osteo in the spine from all this and it is affecting my legs, I have piriformis syndrome now), but all in all...SUPERB. 6 years. SIX FREAKING YEARS I tried to get someone to listen.

I'm so glad you are all feeling better. I look forward to feeling more and more like myself.

Vit D is low, so we're working on feeding those bones

 
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Old 04-30-2013, 07:44 PM   #25
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Re: Parathyroid and Negative Ultrasound, Help!

Thank you...I am being really pushy now. She ran more blood work today. I guess we will see..I'm just tired of being sick and not getting answers....

 
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