# Its Been a While - Back After TT



## Phayah

Last time I posted the docs and I were still trying to figure out if I needed a TT. Well, I just had surgery last Tuesday and I'm going in tomorrow for the post-op appointment.

A brief summary: I've had some whacky labs over the last few years and a lot of normal ones too. I got an ultrasound (solid hypoechoic - bout 1 cm), they did an FNA (follicular/inconclusive) back in Dec 2011 and recommended a partial thyroidectomy. The new Afirma FNA came out shortly after so they put the surgery on hold to see what the test would say. This one also came back inconclusive so was sent for further testing (gene expression?) and they determined it was highly suspicious. Surgery was then scheduled. The endo also believes I have PCOS due to an abnormally high testosterone test result. What a roller coaster!

I must be a big wuss because surgery really sucked for me and it seems like everyone else on here had such an easy time! I couldn't talk at all after surgery. Voice = croaking, gurgling mess. I also had major problems swallowing, particularly thin liquid. It seems to just go straight into my lungs, rather than down the gullet. Swallowing food is not really a problem oddly. I may hack for 10 minutes over a sip of water, almost to the point of retching! I'm very slowly getting better though.

The surgeon told me everything went well and expected. He removed my thyroid and the nearby lymph nodes. He said they looked normal but would be checked also, just in case. I've read some people get a preliminary pathology report but he said nothing about this.

He didn't expect me to have problems with my calcium but I have! I was tested periodically while I spent the night in the hospital and everything seemed fine. 2-3 days after surgery my face started twitching constantly. Random body parts would cramp up with a horrible pins/needles feeling. I just generally felt like crap. I went in to the clinic to get a calcium test and got a call later on saying I needed calcium ASAP or I would have to be hospitalized.

So, I'm taking the calcium but still getting symptoms off and on. They just say to keep taking tums/oscal. I have weird nerve pains everywhere in my neck/throat. Its also scratchy and sore. I can't cough, clear my throat, or sniffle - the mechanism seems to have malfunctioned. My throat makes a weird wheezing sound if I have to take a deep breath or lean over. The nurse insisted I should "stop doing that sound, its probably making it worse" (like it was voluntary - lol!). My lungs/oxygen were repeatedly checked and supposedly in good working order.

I guess it hasn't been a nightmare or anything but its been tough. I'm also really depressed and worrying way too much about how things are going to turn out. Will the pathology reveal cancer or something worse or will we still have a goose chase? I know I'm supposed to think positive but I'm not really at a place where I can do that right now. It seems easier to try not to think about it all!

Let me know if you have any thoughts, suggestions or advice! 

Edit: I forgot to mention, my menstrual cycle started unexpectedly early after surgery and hasn't stopped yet. What's up with that? I was also put on 125 mcg of Levothyroxine, pain meds and an antibiotic.


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## joplin1975

Hey there. I'm sorry you are having such a rough time. Remember you are in the midst of hormonal upheaval right now. I know my emotions were all over the map. This as well as the pain and other issues will resolve themselves. Just hang in there and be kind to your self.

Regarding the pathology, if it does reveal cancer, well, not a whole lot will change. Thankfully, you won't have another surgery. You might have RAI and while the process can be time consuming and the restrictions are a pain, the actual treatment is painless. So, you're over the worst of it all.

Hang in there!


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## webster2

Hey, don't feel like you are a wimp. It is surgery and it is tough to go through mentally too, especially since it was all up in the air for you awhile before it happened. Just rest, relax, and be kind to yourself. Sorry about the calcium issue too, that can be tough.

I agree with Joplin on the path report. Try not to worry too much.


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## Phayah

Yeah. I've felt like crap for so long and no one can figure out what's wrong with me. I'm only 27, I have a 2 year old son, and I'm far from family and friends. I just wonder, if I'm 27 and have cancer, what next?! I feel like my future is so bleak and my body is already falling apart!

The docs have said, "That feeling in your throat is just anxiety." Or, "These nodules are almost always benign." And of course, "Thyroid cancer is curable." So many doctors tell me not to worry but I always seem to get the worst possible scenario. I'm starting to expect it.

Oh, another interesting thing, when I cry I get a strange sensation on the outside corners of my eyes. Yay for nerve damage!?


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## Andros

Phayah said:


> Last time I posted the docs and I were still trying to figure out if I needed a TT. Well, I just had surgery last Tuesday and I'm going in tomorrow for the post-op appointment.
> 
> A brief summary: I've had some whacky labs over the last few years and a lot of normal ones too. I got an ultrasound (solid hypoechoic - bout 1 cm), they did an FNA (follicular/inconclusive) back in Dec 2011 and recommended a partial thyroidectomy. The new Afirma FNA came out shortly after so they put the surgery on hold to see what the test would say. This one also came back inconclusive so was sent for further testing (gene expression?) and they determined it was highly suspicious. Surgery was then scheduled. The endo also believes I have PCOS due to an abnormally high testosterone test result. What a roller coaster!
> 
> I must be a big wuss because surgery really sucked for me and it seems like everyone else on here had such an easy time! I couldn't talk at all after surgery. Voice = croaking, gurgling mess. I also had major problems swallowing, particularly thin liquid. It seems to just go straight into my lungs, rather than down the gullet. Swallowing food is not really a problem oddly. I may hack for 10 minutes over a sip of water, almost to the point of retching! I'm very slowly getting better though.
> 
> The surgeon told me everything went well and expected. He removed my thyroid and the nearby lymph nodes. He said they looked normal but would be checked also, just in case. I've read some people get a preliminary pathology report but he said nothing about this.
> 
> He didn't expect me to have problems with my calcium but I have! I was tested periodically while I spent the night in the hospital and everything seemed fine. 2-3 days after surgery my face started twitching constantly. Random body parts would cramp up with a horrible pins/needles feeling. I just generally felt like crap. I went in to the clinic to get a calcium test and got a call later on saying I needed calcium ASAP or I would have to be hospitalized.
> 
> So, I'm taking the calcium but still getting symptoms off and on. They just say to keep taking tums/oscal. I have weird nerve pains everywhere in my neck/throat. Its also scratchy and sore. I can't cough, clear my throat, or sniffle - the mechanism seems to have malfunctioned. My throat makes a weird wheezing sound if I have to take a deep breath or lean over. The nurse insisted I should "stop doing that sound, its probably making it worse" (like it was voluntary - lol!). My lungs/oxygen were repeatedly checked and supposedly in good working order.
> 
> I guess it hasn't been a nightmare or anything but its been tough. I'm also really depressed and worrying way too much about how things are going to turn out. Will the pathology reveal cancer or something worse or will we still have a goose chase? I know I'm supposed to think positive but I'm not really at a place where I can do that right now. It seems easier to try not to think about it all!
> 
> Let me know if you have any thoughts, suggestions or advice!
> 
> Edit: I forgot to mention, my menstrual cycle started unexpectedly early after surgery and hasn't stopped yet. What's up with that? I was also put on 125 mcg of Levothyroxine, pain meds and an antibiotic.


Oh, you poor dear! We have missed you! When exactly did you have the surgery?

Each situation is soooooooooooooooooo different re the TT. Clearly yours was complicated.

Do not be surprised if the path finds cancer. I remember you well and we discussed this.

You must let us know as soon as you know for I and the others here will walk you through the next steps to be taken which will possibly include follow-up RAI and testing. And the possibility of keeping your TSH suppressed etc..

Just know we are all here for you. Don't be afraid to ask. We have so many that have had the thyroid cancer and they can be loads of help and support to you if indeed that is what the pathologist finds.










Saying prayers for you also!


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## Phayah

Wow, I'm a little in shock. He said no malignancy was found. The doctors said they were almost positive it would be cancer. I'm so confused! The Afirma test is supposed to be extremely accurate?!

Of course, its such a relief and I'm glad there was no cancer but I kinda wonder if someone made a mistake somewhere along the line. Maybe I should call my endocrinologist to see what they think about it.

My calcium seems to still be spinning out of control. I'm so uncomfortable and miserable with cramps/tingling. I talked to the surgeon and he said I still had a parathyroid gland and he transplanted a second one. They did more blood work while I was there. I asked if I could take 3 OsCal instead of 2 every day and he said it would be okay. I'm not sure what else to do!

He took my stitches out and my neck feels so much better! I think my larynx is getting better because I can now lie on my stomach without suffocating. Its torture to not be able to sleep on my belly (lol)! He said my voice, breathing problems, and choking were all due to the voice box and that everything should return to normal eventually. I have a followup for that in 6 weeks.

He also said my calcium should eventually be able to regulate itself which sounds awesome. I just wish I could at least get it under control right now with the supplements.

Its crazy I've been thinking I had cancer and now they tell me I don't! If I didn't have it before I should have had it after this emotional roller coaster. I think they tried to kill me with worry! :tongue0013:

Thanks for the support again everyone!

:hugs:

Edit: Almost forgot Andros, the surgery was last Tuesday (3/27).


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## joplin1975

Well, I'm sorry you had all the worry, but YAY for no cancer!!!hugs4

I, too, felt loads better once those stitches were out. I hate stitches. Hoping you can get your calcium levels straightened out ASAP.


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## webster2

Glad your path report was good! Hang in there!


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## Andros

Phayah said:


> Wow, I'm a little in shock. He said no malignancy was found. The doctors said they were almost positive it would be cancer. I'm so confused! The Afirma test is supposed to be extremely accurate?!
> 
> Of course, its such a relief and I'm glad there was no cancer but I kinda wonder if someone made a mistake somewhere along the line. Maybe I should call my endocrinologist to see what they think about it.
> 
> My calcium seems to still be spinning out of control. I'm so uncomfortable and miserable with cramps/tingling. I talked to the surgeon and he said I still had a parathyroid gland and he transplanted a second one. They did more blood work while I was there. I asked if I could take 3 OsCal instead of 2 every day and he said it would be okay. I'm not sure what else to do!
> 
> He took my stitches out and my neck feels so much better! I think my larynx is getting better because I can now lie on my stomach without suffocating. Its torture to not be able to sleep on my belly (lol)! He said my voice, breathing problems, and choking were all due to the voice box and that everything should return to normal eventually. I have a followup for that in 6 weeks.
> 
> He also said my calcium should eventually be able to regulate itself which sounds awesome. I just wish I could at least get it under control right now with the supplements.
> 
> Its crazy I've been thinking I had cancer and now they tell me I don't! If I didn't have it before I should have had it after this emotional roller coaster. I think they tried to kill me with worry! :tongue0013:
> 
> Thanks for the support again everyone!
> 
> :hugs:
> 
> Edit: Almost forgot Andros, the surgery was last Tuesday (3/27).


Just out of surgery and you have suffered but each day will be better especially now that the stitches are out.

That is very very good news. Which doctor told you? We are all happy to hear no malignancy!! Very happy!


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## Phayah

Andros said:


> Just out of surgery and you have suffered but each day will be better especially now that the stitches are out.
> 
> That is very very good news. Which doctor told you? We are all happy to hear no malignancy!! Very happy!


Thanks guys.

The ENT surgeon told me about the pathology report performed on the thyroid, nodule, lymph nodes, tissues, etc after removal.

My endocrinologist was the one who did the Afirma FNA and told me I had a greater than 80% chance of having cancer and should expect malignancy. The Afirma test actually came back indeterminate and was sent for the second phase of "gene expression testing". It then came back highly suspicious and was concluded I most likely had cancer.

I wish I knew more about how gene expression works and if that means there is anything else I should look into as far as that goes.

Either way, its probably a good thing that its out. I know nodules are common but they don't seem like they're necessarily healthy or normal. It could have turned into cancer one day! It could have been a cause of my hormone levels being off. I had a bothersome "lump in throat" feeling all the time. It was close to my artery and I often felt my pulse there beating against it. Super annoying! :tongue0013:

I also found out I probably have PCOS in this process and that's probably a good thing to try to take care of as soon as I can.


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## Andros

Phayah said:


> Thanks guys.
> 
> The ENT surgeon told me about the pathology report performed on the thyroid, nodule, lymph nodes, tissues, etc after removal.
> 
> My endocrinologist was the one who did the Afirma FNA and told me I had a greater than 80% chance of having cancer and should expect malignancy. The Afirma test actually came back indeterminate and was sent for the second phase of "gene expression testing". It then came back highly suspicious and was concluded I most likely had cancer.
> 
> I wish I knew more about how gene expression works and if that means there is anything else I should look into as far as that goes.
> 
> Either way, its probably a good thing that its out. I know nodules are common but they don't seem like they're necessarily healthy or normal. It could have turned into cancer one day! It could have been a cause of my hormone levels being off. I had a bothersome "lump in throat" feeling all the time. It was close to my artery and I often felt my pulse there beating against it. Super annoying! :tongue0013:
> 
> I also found out I probably have PCOS in this process and that's probably a good thing to try to take care of as soon as I can.


You could inquire a second pathology opinion to put your mind at ease if you so desire.

When will you see a doctor about the possible PCOS?


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## Phayah

Andros said:


> You could inquire a second pathology opinion to put your mind at ease if you so desire.
> 
> When will you see a doctor about the possible PCOS?


I'm thinking he may want to make sure my thyroid levels are stable before going any further with the PCOS theory. Of course, I really have no idea what his plans are! I just know I have an appointment with him 3 weeks from now.

His reasoning was, I have high testosterone and all other hormone levels are basically normal. I had 2/3 normal on cortisol testing and the *majority* of thyroid tests were normal over the last couple of years. He ran a bunch of labs I listed in a previous post and maybe a couple more since then (prolactin maybe?). I'm surprisingly not diabetic, everyone in my family is! I was sure I'd have metabolic syndrome or be pre diabetic. My primary doc ordered an ANA and RF that were negative. I recently had to go to the ER for a nightmare bathroom experience and they did an abdominal x ray and some other unpleasant things. Everything normal for the most part. The only thing standing out right now was the high testosterone. He said he may do another round of the same tests to double check. I hope he does!

Its painfully obvious to anyone with eyes that my hair is falling out but all other symptoms are so vague and fall into so many possibilities. I don't know what else to check! The strange thing is, I don't really have the other PCOS symptoms (facial hair, voice changes, lack of periods).

I think I will give the endocrinologist a call and see what they say about the pathology. The ENT did not seem to know anything about the Afirma FNA when I asked him about it so maybe the endo can shed some light on things.

Oh, I did not get a call back from the ENT today so I'm guessing my calcium levels are stable despite the tingling and twitching. I have no idea what else could cause that.


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## Andros

Phayah said:


> I'm thinking he may want to make sure my thyroid levels are stable before going any further with the PCOS theory. Of course, I really have no idea what his plans are! I just know I have an appointment with him 3 weeks from now.
> 
> His reasoning was, I have high testosterone and all other hormone levels are basically normal. I had 2/3 normal on cortisol testing and the *majority* of thyroid tests were normal over the last couple of years. He ran a bunch of labs I listed in a previous post and maybe a couple more since then (prolactin maybe?). I'm surprisingly not diabetic, everyone in my family is! I was sure I'd have metabolic syndrome or be pre diabetic. My primary doc ordered an ANA and RF that were negative. I recently had to go to the ER for a nightmare bathroom experience and they did an abdominal x ray and some other unpleasant things. Everything normal for the most part. The only thing standing out right now was the high testosterone. He said he may do another round of the same tests to double check. I hope he does!
> 
> Its painfully obvious to anyone with eyes that my hair is falling out but all other symptoms are so vague and fall into so many possibilities. I don't know what else to check! The strange thing is, I don't really have the other PCOS symptoms (facial hair, voice changes, lack of periods).
> 
> I think I will give the endocrinologist a call and see what they say about the pathology. The ENT did not seem to know anything about the Afirma FNA when I asked him about it so maybe the endo can shed some light on things.
> 
> Oh, I did not get a call back from the ENT today so I'm guessing my calcium levels are stable despite the tingling and twitching. I have no idea what else could cause that.


Are you taking calcium; like Tums for instance? If not, try it and see if the tingling goes away. Levels may have been good on the day of the labs but not good now. It works that way sometimes.

Please let us know what endo says about the path and also, yeah.................get a little recovery done before addressing the PCOS because your system is really out of sorts right now. You do need some down time and healing.


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## Phayah

Andros said:


> Are you taking calcium; like Tums for instance? If not, try it and see if the tingling goes away. Levels may have been good on the day of the labs but not good now. It works that way sometimes.
> 
> Please let us know what endo says about the path and also, yeah.................get a little recovery done before addressing the PCOS because your system is really out of sorts right now. You do need some down time and healing.


Yeah, well I prefer to take OsCal but I will take Tums as well if things get really bad. My labs were normal the day of the surgery. I got really sick a few days after and had very low calcium levels. It seemed to improve with supplements but its not gone so they did another calcium test yesterday which I'm assuming was normal. I was symptomatic as the blood was being drawn so I would hope it would give an accurate reflection but I guess things can be whacky.


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## Phayah

Okay, just got off the phone with the nurse from the endo's office. About the Afirma, she just said its rare but it happens! So, it looks like they trust the pathology from the surgery which is great news cause it makes me feel confident about it. :tongue0013:

She also had my calcium results from the ENT's office yesterday and she said the levels were still too low. She is going to have to refer back to the doc to see if they can find a better medication/supplement to manage my calcium. I wonder why I'm immune to OsCal/Tums?!

I was mistaken and my next appointment for the endo will not be until May 24th but she said they will probably have me doing labs before then. I also have to go back to the ENT as well for checkups on the larynx problem.


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## Phayah

If anyone happens to have larynx/voice problems like mine after surgery I found a really awesome pdf that goes into great detail about it. Very interesting stuff! It really explains everything.


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## Octavia

Thanks for sharing that paper about the voice.

Regarding your current issues...you are still pretty "fresh" after surgery (your surgery was not very long ago), and the problems you are dealing with are somewhat common, so don't be too discouraged about what you are experiencing. As for the parathyroids - normally, you have four. It sounds like two were taken, one was left intact, and one was transplanted. So right now, you're effectively working on 25% of normal parathyroid function, at least until that transplanted tissue recovers and starts working well again. That could take several weeks or maybe months.

My voice was also "disturbed" as a result of my two surgeries. It's kind of been an ongoing problem, and I'm getting ready to start some therapy for it, which the ENT is very confident will solve the issues.

That is great news that your pathology report shows no cancer. I would trust that A LOT more than the FNA results. That pathologist probably sliced and diced your tissue in a hundred different ways to look for cancer, especially since it was strongly suspected.

I think you mentioned menstrual issues since your surgery...several of us here experienced odd menstrual issues after TT. It will likely resolve. I agree with your desire to wait until you get leveled out with your thyroid before spending too much effort going down the PCOS path. I think that's smart.


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## Phayah

Octavia said:


> Thanks for sharing that paper about the voice.
> 
> Regarding your current issues...you are still pretty "fresh" after surgery (your surgery was not very long ago), and the problems you are dealing with are somewhat common, so don't be too discouraged about what you are experiencing.


I thought I knew the basics before going in for thyroid surgery but I guess you just have to experience it for yourself. I was told the nerve damage thing was really uncommon! A nurse said my throat was probably just scratchy and sore from the breathing tube but I knew it was more than that. I honestly think she thought I was lying or being melodramatic. I hate when medical staff assume a psychological cause because they don't know what it is and don't bother to ask anyone. Consult an expert! Anyway, my ENT knew exactly what I meant and that pdf explains it so well.

I don't know if I'm being overly optimistic or whatnot but it seems like some aspects have improved and I'm hopeful that it will return to normal eventually, or at least somewhere close to normal. I had another much more basic surgery where I ended up with numbness in my chin and tongue for a few months and its 100% normal now so I'm keeping my fingers crossed!

I think the biggest issue with that has been choking (often to the point of gagging since I am unable to really cough) and the shortness of breath while talking or pretty much any kind of light physical activity. My throat almost closes up and makes a wheezing sound if my breathing speeds up. Its kind of scary. Plus, its extremely embarrassing! Whispering on the phone sucks but I can deal with that part for now.



Octavia said:


> As for the parathyroids - normally, you have four. It sounds like two were taken, one was left intact, and one was transplanted. So right now, you're effectively working on 25% of normal parathyroid function, at least until that transplanted tissue recovers and starts working well again. That could take several weeks or maybe months.


The funny thing is, right after surgery the ENT told me he did not expect me to have any problems with my calcium. They were so confident it'd be fine they stopped stabbing me for testing some time in the middle of the night. They didn't check it before I was released the next day either!

At first, I don't think I could feel the pins and needles or cramping because of the pain medication. I didn't realize anything was wrong until my face started twitching uncontrollably for several hours. My hand clenched up in this weird way and hurt so bad! The pins and needles are almost constant now that I've stopped the pain meds. Cramps are occasional and twitching is rare unless I do the tap trick on my cheekbones. :tongue0013:

My endo has prescribed something to help me with my calcium and I will have to go in for yet another blood test on Monday. Hopefully, it will work! I'm going to go pick up the script in a little while.



Octavia said:


> My voice was also "disturbed" as a result of my two surgeries. It's kind of been an ongoing problem, and I'm getting ready to start some therapy for it, which the ENT is very confident will solve the issues.
> 
> That is great news that your pathology report shows no cancer. I would trust that A LOT more than the FNA results. That pathologist probably sliced and diced your tissue in a hundred different ways to look for cancer, especially since it was strongly suspected.
> 
> I think you mentioned menstrual issues since your surgery...several of us here experienced odd menstrual issues after TT. It will likely resolve. I agree with your desire to wait until you get leveled out with your thyroid before spending too much effort going down the PCOS path. I think that's smart.


I don't really know how all that works with the pathology but you make it sound pretty thorough which is good!

I actually started having menstrual issues last year. It was one of the things that prompted me to see the doctor. The hair loss was the big other thing. There is really no pattern I can discern. They are late/early, long/short, heavy/light. I just never know when or what will happen. I've actually been doing a really good job tracking it though. It is strange but it does seem like it "triggered" my cycle for whatever reason. It was quite literally the day after. I just didn't know if it was something I should mention to the doc. I did eventually remember to mention it to my endo's nurse on the phone.


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## Andros

Phayah said:


> Okay, just got off the phone with the nurse from the endo's office. About the Afirma, she just said its rare but it happens! So, it looks like they trust the pathology from the surgery which is great news cause it makes me feel confident about it. :tongue0013:
> 
> She also had my calcium results from the ENT's office yesterday and she said the levels were still too low. She is going to have to refer back to the doc to see if they can find a better medication/supplement to manage my calcium. I wonder why I'm immune to OsCal/Tums?!
> 
> I was mistaken and my next appointment for the endo will not be until May 24th but she said they will probably have me doing labs before then. I also have to go back to the ENT as well for checkups on the larynx problem.


Interesting that the Oscal/tums are not working for you! Maybe not a high enough dose OR do you have malasorption problems?

Good news about the pathology. Clearly, the jury rules!


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## Phayah

Andros said:


> Interesting that the Oscal/tums are not working for you! Maybe not a high enough dose OR do you have malasorption problems?
> 
> Good news about the pathology. Clearly, the jury rules!


You know, I was convinced at one point I had Celiac disease. I've never had the blood test but I did have an upper endoscopy and they did biopsies of pretty much everything. He told me checking for Celiac in the biopsies was routine. The only thing they found was a tiny of bit of stomach erosion. He thought it might be H Pylori but I guess the biopsy was clean.

One thing though, I had been on a very low carb diet to lose weight for months so I really wasn't eating gluten for maybe 5 months before that procedure. The reason I had it done was because of the tightness in my throat which ultimately led to me having my thyroid removed. :tongue0013:

The only other electrolyte imbalances that have ever been discovered in blood work was low magnesium a couple of years ago. So, no clue... I guess its still possible! I know my digestive issues completely clear up on meat and veggies. The other things do not though. 

I'm taking more than the recommended daily dose of calcium but after doing a bit a google I see there are some people taking incredibly large doses for this same issue. Some are also on prescriptions.


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## Andros

Phayah said:


> You know, I was convinced at one point I had Celiac disease. I've never had the blood test but I did have an upper endoscopy and they did biopsies of pretty much everything. He told me checking for Celiac was routine. The only thing they found was a tiny of bit of stomach erosion. He thought it might be H Pylori but I guess the biopsy was clean.
> 
> One thing though, I had been on a very low carb diet to lose weight for months so I really wasn't eating gluten for maybe 5 months before that procedure. The reason I had it done was because of the tightness in my throat which ultimately led to me having my thyroid removed. :tongue0013:
> 
> The only other electrolyte imbalances that have ever been discovered in blood work was low magnesium a couple of years ago. So, no clue... I guess its still possible! I know my digestive issues completely clear up on meat and veggies. The other things do not though.
> 
> I'm taking more than the recommended daily dose of calcium but after doing a bit a google I see there are some people taking incredibly large doses for this same issue. Some are also on prescriptions.


I sort of got the impression that your doc was going to Rx you some calcium?

Make sure you drink plenty of water; you don't want to end up w/kidney stones.

Could be you have some malasorption.


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## Phayah

Andros said:


> I sort of got the impression that your doc was going to Rx you some calcium?
> 
> Make sure you drink plenty of water; you don't want to end up w/kidney stones.
> 
> Could be you have some malasorption.


Yeah, but I can't remember what its called. :tongue0013:

I probably do not get enough water. It still hurts to swallow and often ends up in my lungs so its not very appealing however kidney stones seem even less appealing!


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## Andros

Phayah said:


> Yeah, but I can't remember what its called. :tongue0013:
> 
> I probably do not get enough water. It still hurts to swallow and often ends up in my lungs so its not very appealing however kidney stones seem even less appealing!


They are; trust me on that one!


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## Phayah

Do you guys know if the medication or supplement I was put on after surgery could cause stomach problems? I take Levothyroxine 125mcg, calcium 600mg with 400 IU of Vitamin D (2x daily), and Calcitriol 0.25mcg.

I'm a little nauseous and *WARNING TMI* there is blood when I do the #2. I have been slightly constipated but not enough for that much blood. It doesn't hurt or anything, otherwise I would think hemorrhoids cause they usually hurt a lot!


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## Octavia

I would look your drugs up on this website or one like it. Intestinal bleeding needs to be watched...could turn into something serious. Definitely call your doctor in the morning to mention it.

http://www.drugs.com/sfx/


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## Phayah

Octavia said:


> I would look your drugs up on this website or one like it. Intestinal bleeding needs to be watched...could turn into something serious. Definitely call your doctor in the morning to mention it.
> 
> http://www.drugs.com/sfx/


Ugh, I'm a little worried. I didn't see anything about any of my medications causing stomach issues. I made an appointment with my primary doc for tomorrow morning and I'm going to call the endo or ENT to see if they think its related to the surgery/post-op stuff. Things are just not going too great for me at all. :sad0049:


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## wshelley

About 6 months after my TT, I was having severe cramps 20-30 times a day in muscles I didn't even know I had. My Calcium, Potassium, and Magnesium were all low when my endo checked my blood. I was put on calcium supplement, which helped a bit, but didn't stop the cramps entirely. I have now started drinking coconut water every day and stopped taling the calcium supplement. It has basically stopped my cramps entirely. I drink 2 or 3 bottles a day. I like the Zico brand best. It is a bit expensize, but well worth it! Give it a try.


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## CindiG

Phayah,

I orginially posted this to you with your quotes about how your Afirma test was so wrong and that is where I wanted this post,but I don't know what happened when I edited it.

I have a lot of great important articles by many different endocrinologists written at different times for The American Thyroid Association's journal criticizing the Afirma test and how 48% (I'm sure it's much higher!) they misclassify benign nodules as suspicious! Out of the three articles the one written by endocrinologist Dr.Jerome Hershman is the strongest criticism and concerns about the inaccuracies and unreliability of this test.

I also read on this Inspire site in their Thyroid Cancer Survivors Association forum,a woman had a 2cm indeterminate nodule that everyone was concerned about and her Afirma test came out suspicious,and she had her thyroid removed,it turns out that the 2cm nodule was benign but they found tiny papillary cancers all under 5mm that weren't even seen on the ultrasound! She also said that her surgeon told her he's had five patients that had a suspicious result from the Afirma test,and then when their nodules were removed and tested they too were benign!

What a huge shame that this happened to you too,and even worse that the Afirma test told you your result was *highly* suspicious and you had to have surgery and lose a thyroid that was working pretty well,and you didn't have a huge benign nodule that you would have had to remove anyway! It's a real shame that you can't sue the Afirma company and your endo who used it! Your case out of all that I have found of people who got a false suspicious result from the Afirma test,is really the worst! Because none of them got the false 80% highly suspicious result that you unfortunately did!

On May 8th endocrinologist Dr.Steven P.Hadak who co-authored one of these studies called me back and was very nice,he even had a patient waiting! He said this Afirma test is wrong half the time misclassifying benign nodules as suspicious,(I'm sure it's even more than half!) and I said this is not a good test,and he said I don't think it's a good test either!

The other Dr.Bryan Mclver one of the authors of the article called,An Independent Study Of A Gene Expression Classifier(Afirma) In The Evaulation Of Cytologically Interdeminate Thyroid Nodules Inital Report from The American Thyroid Asssociation called me back. And he said he doesn't think the Afirma test is as accurate as they say. He also said that what the Afirma pathologist and representatives told me that I have a 40% suspicious chance of thyroid cancer isn't true.

He said it's about 25% still. I asked him if I could get another opinion on my FNA slides and he said yes and I asked him who he could recommend that is very good with thyroid pathology and FNA's and he recommended quite a few Dr.'s so I asked about any at The Mayo Clinic where he used to work and did that Afirma study from,and he recommended three Dr.'s there.

I really hope that someday a much better,more accurate and reliable test will be created! I'm sure as years go by there will more cases like yours and others who get just a false suspicious,not only highly suspicious that's wrong and have unnecessary thyroid surgery!


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## Octavia

CindiG, would you please take a moment to introduce yourself in the new members area of the forum? We'd love to "meet" you!


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## CindiG

Phayah said:


> Thanks guys.
> 
> The ENT surgeon told me about the pathology report performed on the thyroid, nodule, lymph nodes, tissues, etc after removal.
> 
> My endocrinologist was the one who did the Afirma FNA and told me I had a greater than 80% chance of having cancer and should expect malignancy. The Afirma test actually came back indeterminate and was sent for the second phase of "gene expression testing". It then came back highly suspicious and was concluded I most likely had cancer.
> 
> I wish I knew more about how gene expression works and if that means there is anything else I should look into as far as that goes.
> 
> Either way, its probably a good thing that its out. I know nodules are common but they don't seem like they're necessarily healthy or normal. It could have turned into cancer one day! It could have been a cause of my hormone levels being off. I had a bothersome "lump in throat" feeling all the time. It was close to my artery and I often felt my pulse there beating against it. Super annoying! :tongue0013:
> 
> I also found out I probably have PCOS in this process and that's probably a good thing to try to take care of as soon as I can.


I asked several endocrinlogists including two recently one who is my new endo and the one who did my recent FNA and two pathologists the one who reviewed my recent FNA and the one who gave me a second opinion back in July 2008,all from University of Penn if benign thyroid nodules can turn cancerous,and they all said no,they usually don't and they don't believe in them turning into cancer.

50-60% of people have thyroid nodules and 90-95% are benign so since they are so common if most or even many benign nodules turn cancerous,there would be a *much* higher rate of thyroid cancer than there is! So with any benign growth in your body there is a slight chance they will turn cancerous, and possibly a very small amount of them do but it's not common.

And I have been on about 6 thyroid and medical boards since the Fall of 2006 and I have read so many posts from people who had very large benign nodules that they would have had to unfortunately remove even if they had 100% proof that they were benign before they had their thyroids out because they were 3cm,4cm and some as big as eggs,but they still were benign even after growing that big!

So most benign nodules stay benign,but many will continue to grow really big over many years as long as they are in your thyroid. Others will grow to like 1cm and stop but maybe they will grow somewhat more over many many years.Also both benign and cancereous growths grow,because nobody was born with thyroid nodules or uterine polyps etc,so at one time the sizes of both the cancers and benign were size 0 and in order for someone to have a cancerous nodule or benign nodule that is 2mm,8mm,2cm,3cm etc they all grew to reach the sizes they did.


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