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Old 11-16-2012, 09:51 AM   #2146
Tanzanite
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thyroid

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Ihad a completly taken over thyroid by cysts and goiters they said the thyroid gland went deep in to my chest since i was in my teens had so mant biopsys and radioactive scans and my doctors could not biopsy every one to so she suggested surgery they were growing bigger every year but not cancerous they told me after thyroid removed they said i had lost one of the para glands need to talk to him i am waiting on doctor to come back to see me been two days since i saw him i did not understand how serios low calcium is said i could go home but go emergency room if had tingilng have to talk to doctor. m y nightmare is my poor kids have to stay with my husband hes a nightmare but no choice hope i will know something soon thanks for your support ive been here on my own since Monday my freind offered to bring kids to hospital but not wanting to get them sick before holidays so they havent seen me in 5days i miss them but better for them
they took my drain out an hour ago that was uncomfortable have iv with calcium running through plus had so many pills .
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Old 11-16-2012, 09:58 AM   #2147
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thyroid

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Hang in there Tanzanite. Unfortunately sometimes the levels do not come up.

Did they tell you that your parathyroids were damaged during surgery? Sometimes if they are moved etc. they do not reimplant very well. I know one of our posters Jenn has had this problem. She has to take calcitrol. Maybe she can chime in and answer more.

Do you have drains in right now? My surgeon also said my thyroid was huge. My one tumor was 12.5 centimeters. The biggest he has seen I think he said with my type of cancer. I also had another 4 cent. tumor on the L side of my neck.

It does get better. But its a journey, so just take it one step at a time. Its been 3 years for me. We all handle things in our own way in order to deal with it. My faith brings me a lot of comfort.

Wishing you all the best. Blessings to you. Feel free to ask anything and hopefully someone can chime in and help you.
Luv marypoppins did you have your thyroid removed are you ok now doctor made it seem so easy guess i should of researched it more love your name mary also one of my favorites.
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Old 11-16-2012, 10:32 AM   #2148
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Tanzanite- Sorry I'm just a little confused-lots of info at once. You just had your drain out? When was your surgery?
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Old 11-16-2012, 01:43 PM   #2149
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thyroid

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Tanzanite- Sorry I'm just a little confused-lots of info at once. You just had your drain out? When was your surgery?
i had my drain out a few hours ago i had surgery on Monday i am still waiting for doctor to go everything with me.
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Old 11-17-2012, 04:42 PM   #2150
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Originally Posted by Tanzanite View Post
Ihad a completly taken over thyroid by cysts and goiters they said the thyroid gland went deep in to my chest since i was in my teens had so mant biopsys and radioactive scans and my doctors could not biopsy every one to so she suggested surgery they were growing bigger every year but not cancerous they told me after thyroid removed they said i had lost one of the para glands need to talk to him i am waiting on doctor to come back to see me been two days since i saw him i did not understand how serios low calcium is said i could go home but go emergency room if had tingilng have to talk to doctor. m y nightmare is my poor kids have to stay with my husband hes a nightmare but no choice hope i will know something soon thanks for your support ive been here on my own since Monday my freind offered to bring kids to hospital but not wanting to get them sick before holidays so they havent seen me in 5days i miss them but better for them
Hang in there! I too had issue with my para thyroid and 2 years after my surgery I still have trouble with calcium. According to my doctors I may never be able to absorb calcium correctly anymore and the best thing I can do is take calcitriol and lots of calcium each day. If I miss a dose or don't eat enough calcium foods in a day I have numbness and tingling in hands, feet, back, etc. Everyone is different but this has been my experience.
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Old 11-19-2012, 07:57 PM   #2151
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thyroid

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Hang in there! I too had issue with my para thyroid and 2 years after my surgery I still have trouble with calcium. According to my doctors I may never be able to absorb calcium correctly anymore and the best thing I can do is take calcitriol and lots of calcium each day. If I miss a dose or don't eat enough calcium foods in a day I have numbness and tingling in hands, feet, back, etc. Everyone is different but this has been my experience.
i am doing the same as you taking tums supersize 6 times a day calitriol morning and night i have tingling in hands mouth did you have shortness of breath feel like hell sorry if bad choice of word but i did not know what could happen like this the pharmacy when i picked up medicine thought excessive amount of calcium said about kidney stones but didnt understand i may well be in same position its horrid do you feel better though or always feel horrid were you feeling bad when you came home from hospital medicine making me breathless said this happens .
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Old 11-20-2012, 08:12 AM   #2152
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Sorry you are dealing with all this post op stuff. I had lots of complications too so just try and get some rest when you can. Your body has been through an ordeal.

Did your dr. go over everything with you? I hope you are comfortable with him/her.

I guess a lot of your care plan is going to depend on the pathology report.
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Old 11-20-2012, 08:56 AM   #2153
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thyroid

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Sorry you are dealing with all this post op stuff. I had lots of complications too so just try and get some rest when you can. Your body has been through an ordeal.

Did your dr. go over everything with you? I hope you are comfortable with him/her.

I guess a lot of your care plan is going to depend on the pathology report.
Thank you i feel very comfortable with my endocrinologist not so fond of the surgeon was dissapointed with after care at hospital my endo called me last night i went to get my labs done yesterday at a lab near my house as the hospital i went to was not close by i wanted to go to endo office but the surgeon said wanted to get results back same day when i had blood drawn the nurse said would not get them back same day so could of gone to my endo so hope get results bit annoyed going to lab dont know when im comfortable with nurses i know. im finding it hard to care for 3 children as well as my self as i have a problem with the man im married to that put stress on me as i relied more on friends while i was in hospital its hard when you have no one to support you my husband has not spoken to me since night before i went to hospital but i knew i cant relie on him as he is a problem i have lived with for long time i am trying to get better so i will not deal with him right now sorry im a mess .
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Old 11-21-2012, 11:44 PM   #2154
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Just want to say Happy Thanksgiving everyone. As always I am so blessed to be alive.
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Old 11-23-2012, 02:59 PM   #2155
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i am doing the same as you taking tums supersize 6 times a day calitriol morning and night i have tingling in hands mouth did you have shortness of breath feel like hell sorry if bad choice of word but i did not know what could happen like this the pharmacy when i picked up medicine thought excessive amount of calcium said about kidney stones but didnt understand i may well be in same position its horrid do you feel better though or always feel horrid were you feeling bad when you came home from hospital medicine making me breathless said this happens .
It took months to feel better. But now two years later I feel as normal as I think I'm ever going to feel. I really cannot complain. It is my own fault if I miss a dose, as long as I take what I'm supposed to I feel good. My endo monitors the calcium levels closely so that I don't get stones. She also tells me to drink lots of water because that will help prevent stones as well. Hoping you feel better soon!!
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Old 11-25-2012, 10:54 PM   #2156
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Christine - hope you are ok. Havent seen you post in a while

Well Dh and I are off to Disney tomm. and the Beach Club.

Of course there will be the usual food and yummy stuff.

Talked dh into going to MVMCP on 11/29. Glad we got the ap discounts.

My knee has been bothering me, so I am taking the brace and of course the wonderful pain killers I got from my er visit for my ribs/muscle sprain.

I think I am overpacked, but with this weather, you just dont know what to pack. Have to have capris, long, sleeve, short sleeve, sweatshirts etc. May is so much easier to pack for.
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Old 11-28-2012, 08:41 AM   #2157
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LMP--thanks for asking. Yes, I'm doing well just have been distracted with my son's college applications. I'm having to ride him FAR too much to get it done. He's had it. Probably my fault for encouraging to apply to so many schools, but the colleges in Virginia are EXTREMELY hard to get into so I didn't feel "safe" with just two.

I have my annual endocrinologist appointment today. I don't know why these things make me nervous but I'm nervous.
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Old 11-29-2012, 11:06 AM   #2158
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really mad and sad and bewildered and tired

This is my story. It is slightly long and will appear off-topic - it is not.

Had trouble concentrating, dealing with anger, insomnia, anxiety, panic attacks, nausea, stated putting on weight 20 lbs all together. Previously, I had been healthy, average to less than average weight. Never had surgery beyond wisdom tooth and D & C years ago. Had suffered from PTSD 5 years ago. Currently working in a very high stress job 10 -15 hours a day. I begged my doctors to test my thyroid. Blood test was done and I was told the numbers were fine. He says it’s middle age and menopause (hello, I am on the pill but whatever)

It’s February and I am sitting in stylist’s chair getting hair done. I look into the mirror and have a sudden sense of dread that I am not okay. I even ask my stylist if I look okay to him. Poor thing is only 23 and he starts worrying about a heart attack because he read that women have different symptoms. I am most certainly not having a heart attack but I don’t look or feel right.
At work one week later when hit with a sudden horrific pain in lower left flank. I head off to meet my husband for dinner and never make it beyond 5 miles because the pain is too severe.

Swoop into urgent care clinic - nurse and doctor are sure it is a kidney stone. They send me at 8:00 p.m. to get a CT scan to check for size. Technician looks at me funny and says that my doctor will call....okay. I head over to the pharmacy to fill the script for the pain killers when the phone rings while standing in line. Doc calls and says they didn't find a stone. I start arguing that the pain is real and still terrible despite the shot they gave me. He then tells me that they found 15 lesions on my spine and pelvis and is indicative of metastasized bone cancer.

I drive home and call my OB/GYN - doc on call is one of the original partners - he calls me back and says they will immediately want to check for lung, colon, ovarian and breast.
On the next day ( a Friday, of course!), one of the staff ob/gyns walks in and says, 'Why are you here? You need an oncologist. We can't help you!" My DH gets very, very upset and I end up at our state's finest hospital. Admitted through emergency with potentially a broken spine. They do an MRI and send me home.
Next week, my GP comes back from vacation - he laughs all of it off - says it's going to be nothing but orders chest x-ray and ultrasound of thyroid.
In the meantime - MY ob/gyn that is still on vacation calls after his nurse alerts him to what happened and says he wants the lesions biopsied NOW. GP is very angry and suggest OB can fly home and stick the needle in my back himself.

So, I am getting the ultrasound of the thyroid and I ask to speak to the radiologist. There are nodules but that is supposedly common for my age (46). He asked if there are any other findings. I tell him about the lesions on my spine and pelvis from the CT scan and he says I will need to get a biopsy. GP is pissed that I spoke to the radiologist myself. He thinks it is a waste of time. Four days later I have the biopsy of the thyroid and the results are benign.

My OB/GYN returns from vacation and calls me in for an exam and then asks me to come to his business office. (Haven’t been in that office since miscarriage in the 90’s). He starts to give me the speech about thyroid tests and science not up to date and is basically prepping me that my numbers aren’t going to be quite where they should be for treatment but that he is going to treat anyway with my consent because women get jerked around with this stuff all of the time. LOVE HIM. Except, the lab faxes over .52 POINT 52 not the 6-8 he expected – NOT EVEN CLOSE. So he sends me to an MD that specializes in diagnostic work.

She does a two hour intake and then wheels her chair to face me nose to nose and says that I really need to leave my job if I want to survive. She suggests a month long retreat – not quite to a psych hospital but sort of a meditative spa….just where are these places and who can afford them, I do not know...but I digress.

Anywho, during this time, I am getting more and more frantic, docs, counselors want me to go on SSRI (NFW!). I see a neuromuscular oncologist who says the lesions are just hemangiomas and boney islands. OKAY…and the diagnostician is concerned about one of my thyroid test results – it should be no higher than 55 but mine is 928….she never gets back to me. I am having some very dark thoughts and panic attacks and nausea, etc….

I see GP in August . Beg and cry that something is wrong. He says I should probably see an endocrinologist and gives me a name. Endo isn’t taking new patients. Oh and my numbers are going the right way – it’s now in the 700’s down from the 900s.

Get appointment in September thanks to our department’s very persistent secretary. Endocrinologist walks in and says, “Do you know how big that thing is? It’s huge!” I do not have any clue. He explains that one of the nodules – there are 6 – is the size of a baseball and that he thinks it needs to come out particularly because the biopsy might not have been complete on something that big. Please believe me that nobody on the street could see this thing- I am blessed with a very thin neck. It did look a little puffy – but I chalked it up to middle age and other nonsense being pushed my way. I agree that it should come out and begin search for surgeon. Endocrinologist calls hospital lab because some pages are missing in the pathology report. They think he wants them to retest the sample and OOPS – they made a mistake – IT IS MALIGNANT. Just like that. GP calls me in and says how sorry he is.
I was scheduled for surgery on October 10th at Brigham and Women’s – see you later Rhode Island!

Just for fun after reading some of the other posts – I had a root canal, endoscopy (1st), colonoscopy (1st) , and total thyroidectomy in 8 days.
Four of the six nodules were malignant. Papillary follicular variant.

I had my Thyrogen shots on Monday and Tuesday. Swallowed the RAI tracer dose yesterday and going for blood work today with a scan set for tomorrow. AND because when it rains…in 2 weeks, I will be back at Brigham to have my gall bladder removed. Giant stone. Nausea was NOT in my head.
It is expected that I will have the full RAI in January.
That’s my story. Thank you to whoever reads it. It’s been a long fight. BUT I WAS AND AM NOT CRAZY!
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Old 11-29-2012, 12:19 PM   #2159
mrsklamc
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Welcome! This thread has been very important to my coping with my cancer. I am sorry you had to go through all that...do you have to have surgery for the lesions on your spine now?

I have always been very very grateful that my thyca diagnosis was not the result of a long, frustrating process.
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Old 11-29-2012, 02:36 PM   #2160
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Welcome! This thread has been very important to my coping with my cancer. I am sorry you had to go through all that...do you have to have surgery for the lesions on your spine now?

I have always been very very grateful that my thyca diagnosis was not the result of a long, frustrating process.
who knows?- *they* are still saying it is a coincidence. The NP that did my pre-op said NFW! She wants me to see a spine specialist in Boston as soon as this is done.
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14 Jan/Feb OKW (GV) banking amnesia again 12 days
12 Feb 3 nights OKW & 7 nights Magic West. Caribbean
10 Feb because I forgot to bank in time trip OWK
09 June/July OKW (2 weeks)
07 June/July OKW
06 Aug OKW (for 2 weeks!)
05 Jan OKW
04 May OKW (DH's 1st. trip)
May 03, Aug, 02, July 01, Sept. 00 OKW
98 & 99 Jan. OKW
97 Feb. OKW/BW
96 Oct. & Jan. OKW
95 Sept. & May OKW
94 Sept. OKW 1st. trip as DVC members
92 May & 89 June Offsite
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