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Re: My thyroid cancer saved my life! Trust your instincts!!!

@pupwhipped  I'd be more than happy to share my test results.  I'll look them up this evening and post them for you.

"I've been here since October 2006. Wow!"
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Re: My thyroid cancer saved my life! Trust your instincts!!!

[ Edited ]

@pupwhipped wrote:

@onlyshopsonline, I do have a question if you have time. You said your calcium was above 10. Can you please tell me exactly what your levels were? How much above 10? And I assume you had your PTH levels measured. What were the results there? In reading your post you did mention your parathyroid tests were inconclusive so I am just wondering about all this. It sounds like ultimately the CT scan was what diagnosed your parathyroid problem. And, of course, your persistence in finding out what was wrong with you was paramount.

 

Thanks for any help!

pup    


@pupwhipped  I've looked up some of my numbers for you.  Over the course of the last year, my serum calcium numbers were running about 10.1 to 10.4....just within what was considered "normal."  But, if you read the info provided by Parathyroid.com, nobody over 30 should be over 10. However, the only thing doctors look at is the "normal range." Before 2013, they were in the 9's.

 

My surgeon ran a host of other tests including ionized calcium, which was just barely within normal range.  And the first PTH that he ran was 58.


I think he was pretty sure he would find a parathyroid tumor when he operated, but these numbers weren't enough to justify a CT scan with contrast dye.  Right before my surgery, I went for more tests, and my serum calcium was 10.7 that day...which was out of "normal range."  They called my home and set me up for another 24 hour urine test and scheduled the CT scan.  I was originally scheduled for surgery on April 12, but I couldn't get in for the CT scan until April 18, so my surgery was postponed until May 10.

 

If you read the website, you'll find that people without hyperparathyroidism pretty much stay stable in their serum calcium levels.  People with parathyroid adenomas can bounce all over the place.  

 

On the day of my surgery, my serum calcium had dropped down to 10.3....which many doctors would have considered normal.  But my PTH had risen to 77.  During the surgery, a substantial parathyroid adenoma was found.  And, during the course of the thyroidectomy, they continued to monitor my blood PTH levels.  They dropped as follows...77, 38, 32, 23, 21, 15.  And, my serum calcium after surgery was 9.4!

 

ETA:  I forgot to mention that back when the first blood test showed a serum calcium level over 10, my urinalysis also showed a moderate level of calcium oxylate crystals.  These are the type of crystals that cause kidney stones.  So, while the parathyroid adenoma had not yet caused kidney damage, I was on my way to developing kidney stones.  THIS SHOULD HAVE BEEN A RED FLAG TO MY PCP SEVERAL YEARS AGO!

 

Also wanted to add that the CT Scan was used more to locate the parathyroid adenoma than to diagnose it.  

 

Hope that helps.  

"I've been here since October 2006. Wow!"
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Re: My thyroid cancer saved my life! Trust your instincts!!!

@onlyshopsonline, thank you so, sooooo much for replying to me with this information! It is very interesting. I'm going to go look over my tests. I believe over the last couple of years I've had a 10, 10.1, and the very latest being 10.2. And I've also had some "normal" ones of 9.6 mixed in there, too. I'm going to go check for sure.

 

About 18 months ago I was feeling really bad.That's when I stumbled onto the parathyroid site you mentioned. I think I had every symptom on their list except headaches. But then the next blood test I had done at my gynecologist's office showed a calcium level of 9.8. Anyway, around this time in my quest to find out what was wrong with me, I also saw a cardiologist. He put me on a beta blocker. That actually seemed to make me feel better so I kinda forgot about the parathyroid. After reading your post, I checked my last blood work done in Jan. and my calcium was 10.2. So, I think at the very least I should ask my GP to check my PTH. I've never had that done before. He will probably look at me like I'm nuts, but whatever. Your story is a prime example of why we have to be vigilant.

 

How are you doing? Have you had any issues since surgery? And was it the minimally invasive procedure like the one they do in Tampa? I do hope you do not have to have any other treatment for your thyroid. Please let us know what they tell you tomorrow. And again, thank you so much for your response to me!

 

pup    

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Re: My thyroid cancer saved my life! Trust your instincts!!!


@pupwhipped wrote:

@onlyshopsonline, thank you so, sooooo much for replying to me with this information! It is very interesting. I'm going to go look over my tests. I believe over the last couple of years I've had a 10, 10.1, and the very latest being 10.2. And I've also had some "normal" ones of 9.6 mixed in there, too. I'm going to go check for sure.

 

About 18 months ago I was feeling really bad.That's when I stumbled onto the parathyroid site you mentioned. I think I had every symptom on their list except headaches. But then the next blood test I had done at my gynecologist's office showed a calcium level of 9.8. Anyway, around this time in my quest to find out what was wrong with me, I also saw a cardiologist. He put me on a beta blocker. That actually seemed to make me feel better so I kinda forgot about the parathyroid. After reading your post, I checked my last blood work done in Jan. and my calcium was 10.2. So, I think at the very least I should ask my GP to check my PTH. I've never had that done before. He will probably look at me like I'm nuts, but whatever. Your story is a prime example of why we have to be vigilant.

 

How are you doing? Have you had any issues since surgery? And was it the minimally invasive procedure like the one they do in Tampa? I do hope you do not have to have any other treatment for your thyroid. Please let us know what they tell you tomorrow. And again, thank you so much for your response to me!

 

pup    


@pupwhipped  My parathyroidectomy was performed during my total thyroidectomy.  So I had a much more complicated surgery.  However, I have to say that it was the easiest surgery I've ever had.  I had a dose of fentynal after the surgery, and then only two more doses of extra strength Tylenol during my overnight hospital stay.  I really wasn't having any pain, but they insisted that I take at least the Tylenol.  I do understand that it's easier to keep ahead of the pain so I did it and then took some regular strength Tylenol the day I came home.  

 

My only discomfort was a sore throat, and some swelling.  Eating a few hours after surgery was difficult, but I was doing ok by the next day.  Now I'm back to shoving food in my face LOL!

 

About 48 hours after surgery I almost passed out because my blood pressure and heart rate dropped significantly.  I called and got in to see my NEW PCP, and he reduced my blood pressure medication.  

 

And, I do believe some of my body pain has gotten about 50% better.

 

To be honest, the worst part of the surgery was recovering from the anesthesia and drugs used for the surgery.  My head felt foggy for a couple of days.  And I felt like I was missing bits and pieces of time.  My PCP told me to drink lots of water to clear it out of my systerm and my brain felt back to normal within a few days.  Most people might not be bothered by that, but it bothers me to think I'm not in control of my thinking.

 

So, yesterday was two weeks since my surgery.  I can return to normal activities.  My scar looks good.  My surgeon used glue and it still hasn't completely peeled off.  I'm dealing with some depression right now.  I am prone to post surgical depression.  And, I know I need an increase in my thyroid meds.  But, I'll be seeing my endocrinologist tomorrow.

 

Fingers crossed, I won't need the RAI treatment.  I did that years ago for the Hashi attacks.  That's a huge PITA!  My surgeon doesn't think I will need it, but my endo has the final say.

 

You can buy an app that is from Parathyroid.com.  I think it was $3.  I used it to input all of my test results and it gives you the likelihood of having a parathyroid adenoma.  It worked for me!

 

If your doctor looks at you like you're crazy, make an appointment with a specialist.  I had to see four doctors, before one would take me seriously!

 

Keep me posted!

"I've been here since October 2006. Wow!"
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Re: My thyroid cancer saved my life! Trust your instincts!!!

Thank you so much for sharing this.  I just found out that I have 5 nodules on my thyroid and I'm in the process of researching like crazy.

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Re: My thyroid cancer saved my life! Trust your instincts!!!

[ Edited ]

@Glittergal wrote:

Thank you so much for sharing this.  I just found out that I have 5 nodules on my thyroid and I'm in the process of researching like crazy.


@Glittergal  Hope I could be of some help.  But, don't confuse the parathyroid glands with the thyroid and thyroid nodules.  The parathyroid glands have nothing to do with thyroid function.  They control calcium levels in your body.  Most of the time, they happen to be located right behind your thyroid...however they can even develop lower in your chest.

 

I feel like there is some connection either between the Hashimoto's disease and the fact that I developed hyperparathyroidism.  OR did I develop thyroid cancer and hyperparathyroidism because of the dose of radioactive iodine I received almost 12 years ago?  I suspect that the RAI treatment caused this and I really hope I won't need another dose.  I'm going to get a second opinion if my endo says I need the treatment.

 

ETA:   My daughter has 4 or 5 nodules, and they have all been biopsied.  She is fine, but takes a low dose of Synthroid.

"I've been here since October 2006. Wow!"
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Re: My thyroid cancer saved my life! Trust your instincts!!!

@onlyshopsonline, sorry I've not gotten back to you sooner but my friend's mother died and I've been involved with that. Anyway, thank you very much for taking the time to reply to me. It sounds like overall you have done exceedingly well with this surgery. I hope any lingering depression will be gone VERY SOON. I had knee scope surgery last Oct. and my issue with the anesthesia seemed to be hair loss. Ugh! I was getting depressed over that side effect. Ha! 

 

I hope you got good news yesterday at your appt. Also hope that every thing will continue to go well for you. Keep me posted. And, once again, thanks so much for sharing your story. It was kind of you to do so and has certainly given me much to think about.

 

Best to you!

pup 

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Re: My thyroid cancer saved my life! Trust your instincts!!!

@pupwhipped  I saw my endo yesterday and DO NOT need the RAI treatment.  However, when he read my pathology report, he told me that I actually had two very small, contained papillary thyroid cancers.  The second was found when the pathologists dissected both lobes of the thyroid.  I've read that this is not unusual, especially in Hashimoto's patients.  

 

We will keep a watch by doing thyroglobulin tests every six months to make sure the cancer doesn't return.  He said the chances of that were very slim, especially since all lymph nodes, blood vessels, tissue, and everything else that they biopsied came back clear.  And my tumor stage for both was PT1A, which is the lowest it can be.

 

Of course, I went online and read that the odds of it coming back were greater if you have more than one papillary thyroid cancer.  But there are so many variables.  I think I'll feel better once I talk with the surgeon for my post-surgical follow-up next week.  This just threw me for a loop.  Wish I had a crystal ball.....don't we all!  

 

Take care and keep me posted on your situation!

"I've been here since October 2006. Wow!"
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Re: My thyroid cancer saved my life! Trust your instincts!!!

@onlyshopsonline, so glad you don't have to have the treatments! I'm sure you weren't expecting two cancers but I wouldn't stress too much over that. They are BOTH gone now! 

 

I will keep you posted if I find out anything with my situation. And I sure know what you mean about reading stuff on the Internet. Prior to my bunion surgery in 2013, I read all these horror stories online that scared the cwap out of me. And my surgery could not have gone any smoother...it turned out great for me!

 

Take care,

pup 

 

  

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Re: My thyroid cancer saved my life! Trust your instincts!!!

@onlyshopsonline, I just thought I would come back and give you an update. I went to the doctor this week (sick with bronchitis) and had him add in a parathyroid hormone test with my other blood work. It came back as 25 and my calcium level was 9.4. That's the first time my calcium has been under 10 in awhile. Anyway, given the result of the PTH level, I feel confident that I don't have any problems with a parathyroid tumor.

 

Just thought I would let you know. I hope you are doing well. And again, I really appreciate you sharing your experiences here in this thread.

 

Best to you!

pup