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Old 03-02-2011, 07:38 PM   #1231
mrsklamc
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Originally Posted by luvmarypoppins View Post

Oh yes, those of us that have thy ca on this thread, you are officially Rare!!

Thats always a joke that I have told my dh, especially when they said I had the rare variant, I always say "I wanted medium, and I got rare!", also our own personal joke since I like steak etc. medium.

There is you ca. humor for the day.
Funny because I like things WELL.
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Old 03-02-2011, 07:41 PM   #1232
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Originally Posted by mom23boys View Post
Hi All,
If I can join your thread I would really appreciate it. I just came back from an endocrinoligist (sp) appointment. In the fall I felt my throat was enlarged and I was having trouble swallowing. So I went to the Dr and did a blood test, my tests were good even my thyroid (don't have the results handy I gave them to the dr this morning). So I went for an ultrasound this past Friday and I have 6 nodules on my thyroid. One is huge 5 cm on the left, the right side has 4 smaller nodules (2 cm and 4 at 1cm) and the isthmus has a 1cm nodule. So to say that I am a little freaked out is an understatement.

I am getting a FNA biopsy in 2 weeks and then to see a surgeon. I will keep you guys updated it that is okay.

Thanks for reading.
Wow two weeks is a long wait! How frustrated you must be.
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Old 03-03-2011, 09:57 AM   #1233
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Funny because I like things WELL.
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Old 03-06-2011, 12:38 PM   #1234
itsdisneytime
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Newbie to your thread

Hi all.

My name is Shannon - 36yr old female - with a 9yr old dd. I was so happy when I stumbled upon Luvmarypoppins in the disabilities forum. I was asking about issues I am having since my thyroid removal in July 09. I am married although I do not have a bunch of sympathy -- somehow my family is detatched and not very emotional (all of us) .. not just me and my husband, I come from a long line of (love your family but dont doat type people).

Ill try to keep this short to give you basics on me -- I am really going to need help from kind hearted understanding people with similar issues.

I went for a health screen in june of 09 after avoiding docs since my dd was born in 02. I had no health insurance then so I went to a free clinic (my husband and I own a small business and the recession hit us hard) so needless to say I couldnt afford insurance, .... the doc at the free clinic said my thyroid felt enlarged, set me up for an iodized can? which showed how large it was (i was never told but it was huge they said per the rad tech) .. I then had a biopsy which came back inconclusive - doc said if she were me she went consult with ent and go from there.
ent free clinic docs offered to operate saying it was too large to not cut 1/2 and test while i was asleep in o.r -- which they did on july 21, 09. They determined it was cancerous and cut out the whole thing ...
** my doctor removed 2 lymph nodes so she thought to test and see if it had gone there and while the news was good it had not gone to the lymph nodes == it was complicated by the fact that they told her there was 2 para thyroid glands in there and they could not be put back in. **
during my surgery my doctor also lacerated a vein and only after they sewed me back up did they realize i was bleeding internally.

I spent 11 days in hosp -- ive never gotten a normal blood calcium reading DESPITE the huge quantity of calcitriol and vitamin d and oscal i take ...

lets dont even talk about my new issues , IBS and constant nausea from the medications and ammounts I am taking --

I am being tested currently to see if the cancer has spread as my levels came back high -- this was a non stimulated test, thyrogen will be next.

does anyone relate to these words:? my laptop is dying but i also realized i forgot to mention my 2 times radiation ... once was a pill that i took orally and had to isolate for 10 days ... one was 6 weeks of beam treatment that left me with no tastebuds .. or actually, metal tastes
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Old 03-06-2011, 01:14 PM   #1235
Christine
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Hi there! Sorry to hear that you have struggled so much with this.

First, it sounds as if your remaining parathyroid glands never took over for the missing two. I had one removed during surgery so I've been living with three and have never had a problem. My surgeon told me that even if you only have one parathyroid left, it will often just work as well as the four did. I wonder if they damaged the other two during surgery and just didn't know.

Have they given you any hope that they might start working?

It sounds as if you had a Thyroglobulin come back elevated which indicates (since you are still so soon after surgery) that you have persistant thyroid tissue still in your neck somewhere.

Have you had ultrasounds done? Are you still without insurance?

I don't know much about external beam radiation as I don't know many thyroid cancer people who've had that.


Quote:
Originally Posted by itsdisneytime View Post
Hi all.

My name is Shannon - 36yr old female - with a 9yr old dd. I was so happy when I stumbled upon Luvmarypoppins in the disabilities forum. I was asking about issues I am having since my thyroid removal in July 09. I am married although I do not have a bunch of sympathy -- somehow my family is detatched and not very emotional (all of us) .. not just me and my husband, I come from a long line of (love your family but dont doat type people).

Ill try to keep this short to give you basics on me -- I am really going to need help from kind hearted understanding people with similar issues.

I went for a health screen in june of 09 after avoiding docs since my dd was born in 02. I had no health insurance then so I went to a free clinic (my husband and I own a small business and the recession hit us hard) so needless to say I couldnt afford insurance, .... the doc at the free clinic said my thyroid felt enlarged, set me up for an iodized can? which showed how large it was (i was never told but it was huge they said per the rad tech) .. I then had a biopsy which came back inconclusive - doc said if she were me she went consult with ent and go from there.
ent free clinic docs offered to operate saying it was too large to not cut 1/2 and test while i was asleep in o.r -- which they did on july 21, 09. They determined it was cancerous and cut out the whole thing ...
** my doctor removed 2 lymph nodes so she thought to test and see if it had gone there and while the news was good it had not gone to the lymph nodes == it was complicated by the fact that they told her there was 2 para thyroid glands in there and they could not be put back in. **
during my surgery my doctor also lacerated a vein and only after they sewed me back up did they realize i was bleeding internally.

I spent 11 days in hosp -- ive never gotten a normal blood calcium reading DESPITE the huge quantity of calcitriol and vitamin d and oscal i take ...

lets dont even talk about my new issues , IBS and constant nausea from the medications and ammounts I am taking --

I am being tested currently to see if the cancer has spread as my levels came back high -- this was a non stimulated test, thyrogen will be next.

does anyone relate to these words:? my laptop is dying but i also realized i forgot to mention my 2 times radiation ... once was a pill that i took orally and had to isolate for 10 days ... one was 6 weeks of beam treatment that left me with no tastebuds .. or actually, metal tastes
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Old 03-06-2011, 09:34 PM   #1236
MedicBill
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Hi guys!
Just found this thread and wanted to jump in. Im a 32 year old guy that was diagnosed with an enlarged thyroid on Oct 15,2010. It was so big that it was compressing my trachea and causing respiratory problems. I had it removed on Nov 15. Pathology report showed papillary cancer and 2 parathyroid glands were "accidently" removed. I did the radioactive iodine treatment, followed by a pet scan and it looks like the cancer is gone.

My first appointment with an endocrinologist is scheduled for this tuesday, March 7th. Is it normal to go that long before endocrinologists get involved? I was initially on 100 mcg of Synthroid post surgery and after 6 weeks my TSH was 79. My oncologist increased my synthroid to 200 mcg and its still there. Since my surgery I have gained 70 pounds, I cant concentrate on anything and I get horrible muscle cramps with minimal activity. I expected to gain some weight but this is out of control. Does anybody know why Im having these muscle cramps and is there anything that I should tell my endocrinologist to make sure he understands how miserable I am?

Thanks!
Bill
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Old 03-06-2011, 09:44 PM   #1237
mrsklamc
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Originally Posted by MedicBill View Post
Hi guys!
Just found this thread and wanted to jump in. Im a 32 year old guy that was diagnosed with an enlarged thyroid on Oct 15,2010. It was so big that it was compressing my trachea and causing respiratory problems. I had it removed on Nov 15. Pathology report showed papillary cancer and 2 parathyroid glands were "accidently" removed. I did the radioactive iodine treatment, followed by a pet scan and it looks like the cancer is gone.

My first appointment with an endocrinologist is scheduled for this tuesday, March 7th. Is it normal to go that long before endocrinologists get involved? I was initially on 100 mcg of Synthroid post surgery and after 6 weeks my TSH was 79. My oncologist increased my synthroid to 200 mcg and its still there. Since my surgery I have gained 70 pounds, I cant concentrate on anything and I get horrible muscle cramps with minimal activity. I expected to gain some weight but this is out of control. Does anybody know why Im having these muscle cramps and is there anything that I should tell my endocrinologist to make sure he understands how miserable I am?

Thanks!
Bill
Good gracious! YES that's a long time before an endo gets involved!!! I'd guess your muscle cramps are because of low calcium from the lack of parathyroids. If your endo is a good one, they will know how miserable an off dose feels.
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Old 03-06-2011, 10:04 PM   #1238
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Originally Posted by mrsklamc View Post
Good gracious! YES that's a long time before an endo gets involved!!! I'd guess your muscle cramps are because of low calcium from the lack of parathyroids. If your endo is a good one, they will know how miserable an off dose feels.

Cool! Thanks for the quick response!
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Old 03-07-2011, 08:36 AM   #1239
Christine
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Quote:
Originally Posted by MedicBill View Post
Hi guys!
Just found this thread and wanted to jump in. Im a 32 year old guy that was diagnosed with an enlarged thyroid on Oct 15,2010. It was so big that it was compressing my trachea and causing respiratory problems. I had it removed on Nov 15. Pathology report showed papillary cancer and 2 parathyroid glands were "accidently" removed. I did the radioactive iodine treatment, followed by a pet scan and it looks like the cancer is gone.

My first appointment with an endocrinologist is scheduled for this tuesday, March 7th. Is it normal to go that long before endocrinologists get involved? I was initially on 100 mcg of Synthroid post surgery and after 6 weeks my TSH was 79. My oncologist increased my synthroid to 200 mcg and its still there. Since my surgery I have gained 70 pounds, I cant concentrate on anything and I get horrible muscle cramps with minimal activity. I expected to gain some weight but this is out of control. Does anybody know why Im having these muscle cramps and is there anything that I should tell my endocrinologist to make sure he understands how miserable I am?

Thanks!
Bill

Hi Bill and welcome.

Yes, it is a long time to go without seeing an endo but I know that endos can be terribly hard to get into, especially if you are waiting to see a top notch one. Tomorrow can't come soon enough, huh?

100 mcg of thyroid hormone is probably way too low for a man. Most women thyroid cancer patients are started on a minimum of 125 mcg. After any adjustments it takes 6 weeks to see *some* improvement. Are you saying that even after the adjustment to 200 mcg, you are still having a TSH of 79?

I'm not shocked you have gained so much weight. I never gained more than 10 lbs but I was never hypo for as long as you have been. The good thing is that once my meds were regulated, the hypo weight came off pretty quickly. It wasn't like it was "real" fat but almost like a swelling kind of weight if that makes sense.

I, for one, used to get horrible muscle cramping and charlie horses when hypo. I would wake up in the middle of the night with my calves spasming so bad. I never had a calcium issue so the hyponess definitely causes it.

I hope you get relief soon.
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Old 03-07-2011, 09:52 AM   #1240
mrsklamc
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Yes, hypo can definitely cause cramps too. I just jumped on calcium because of the para's.

Question for you guys- the last couple months I seem to be perpetually tired and crabby. My TSH was at .098 but she did alter my dosage slightly because I felt like I might be hyper. But of course, it takes several weeks for the dosage to adjust. In the meantime, I hate feeling like this. Do you think I should wait for the dose to adjust, or maybe ask my GP about anti depressants?
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Old 03-07-2011, 10:41 AM   #1241
Christine
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Quote:
Originally Posted by mrsklamc View Post
Yes, hypo can definitely cause cramps too. I just jumped on calcium because of the para's.

Question for you guys- the last couple months I seem to be perpetually tired and crabby. My TSH was at .098 but she did alter my dosage slightly because I felt like I might be hyper. But of course, it takes several weeks for the dosage to adjust. In the meantime, I hate feeling like this. Do you think I should wait for the dose to adjust, or maybe ask my GP about anti depressants?

Oh, that's a tough one. I will tell you that, for the most part, I do not like anti-depressants because I feel that are WAY overprescribed when good medicine needs to be practiced first. I can't tell you how many times I've had them thrown at me for "anxiety" and "depression" neither of which I had that weren't due to medical issues.

You may just be figuring out that .098 TSH is too low for you. I don't truly operate well below 0.3 and that's a good bit higher than you. I know I've posted this before but I an old thyroid cancer friend of mine told me that she knew when she needed her meds adjusted because everyone became an idiot and a jerk and she was constantly crabbing at everyone. Permanent PMS. This is a common reaction to too much thyroid hormone. I know a lot of people never ask their doctors what their TSH is, but if for only this reason, it's important to figure out at what level do you feel best.

The good news is that coming down from too much thyroid hormone seems to happen quicker than going the other way. When I've been too hyper, my endo will often have me skip my meds for 3-4 days and then adjust me on the lower dose so I come down faster. I can usually feel better within 2 weeks.

I don't know if you've ever tried antidepressants but they come with a HOST of side effects that are nasty for some people. I would be very leary of adding them to the mix of what you are going through unless you are at some point where you feel you can't cope, can't get through your day, I might hold off on them. But everyone is different and you may do well with them.
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Old 03-07-2011, 11:04 AM   #1242
mrsklamc
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I emailed my endo and asked if they wanted me to wait for the dosage to adjust, or contact my GP. Every time someone annoys me at work I seriously contemplate quitting, and though I should worry about the ramifications of that I just don't care.
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Old 03-07-2011, 11:07 AM   #1243
luvmarypoppins
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Shannon - I am glad you got over here. When is your thyrogen testing? What happened when you had the internal bleeding. Sounds like what happened to me, but it was the jugular vein and I almost died, lost almost all my blood and was in a coma for 2 days.

MedicBill - From a fellow NYer. (Long Island)That is such a long time to wait for an endo visit. I had a long wait too, but when I told my surgeon, they called and got me in much sooner. I go to a univ. teaching hospital so they have several to pick from. I guess if there are limited drs. in your area it might seem like the wait is longer. Hope your endo visit goes well. Take a notebook to write everything down, symptoms, questions you want to ask etc. Sometimes it gets confusing. I think your synthroid level is too low too. Mine is 200. My trachea was being crushed too, so I can relate to that for sure. My one tumor was 12.5. Just curious if you have just reg. pap. or any variant. Of course I am always looking to compare notes and trying to find someone with the rare columnar cell variant which I have, which they tell me is usually found in men.

They are seeing thy ca in men around here who worked at the Ground Zero 9/11 clean up. The hosp. I go to is one of the monitoring places. Of course they dont say much due to confidentiality but I did see one guy in the news etc.

I got the B12 shot Friday. I am still tired as always.
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Old 03-07-2011, 11:13 AM   #1244
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Bill I am amazed at how similar our stories sound. I too had my parathyroid glands taken accidentally and i have gained 30 lbs since my surgery. My thumbs are the most noticeable cramp I have, my hands are constantly numb or tingling when they aren't ....

** I do have insurance now, and I have been seeing an endocrin dr even when I did not, I was just having to wait a long time on the sliding cost days **

I feel like a space cadet at times but I figured that had a lot to do with personal issues with my family that kept me sort of down and depressed feeling .. I have heard though that this thyroid disease and or cancer can cause depression due to hormonal issues.

I am scared when I hear you all talk to intelligeably about your readings and numbers and such ... I do not know things about my thyroid level .. i only now understand calcium because it is always 3.4 or 3.5 .. and my total calcium is a 7 (whatever that means to me) .. .im critical low is what the screen says when it highlights red.

What is wrong with my thinking that I am not more intelligeable about my "facts" I would very much like to blame the fact that Ive been to free clinic doctors who did not have much time to go over things with me ... but, I suppose I could have asked for my charts and taught myself (especially since Ive learned through all of this that you (we) have to be our own advocates when it comes to our health.

I am sad that I have to push myself as hard as i do to feel normal ... and I feel like I am looked upon as someone fat and lazy ... not someone tired and trying.
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Old 03-07-2011, 12:48 PM   #1245
Christine
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Quote:
Originally Posted by itsdisneytime View Post
Bill I am amazed at how similar our stories sound. I too had my parathyroid glands taken accidentally and i have gained 30 lbs since my surgery. My thumbs are the most noticeable cramp I have, my hands are constantly numb or tingling when they aren't ....

** I do have insurance now, and I have been seeing an endocrin dr even when I did not, I was just having to wait a long time on the sliding cost days **

I feel like a space cadet at times but I figured that had a lot to do with personal issues with my family that kept me sort of down and depressed feeling .. I have heard though that this thyroid disease and or cancer can cause depression due to hormonal issues.

I am scared when I hear you all talk to intelligeably about your readings and numbers and such ... I do not know things about my thyroid level .. i only now understand calcium because it is always 3.4 or 3.5 .. and my total calcium is a 7 (whatever that means to me) .. .im critical low is what the screen says when it highlights red.

What is wrong with my thinking that I am not more intelligeable about my "facts" I would very much like to blame the fact that Ive been to free clinic doctors who did not have much time to go over things with me ... but, I suppose I could have asked for my charts and taught myself (especially since Ive learned through all of this that you (we) have to be our own advocates when it comes to our health.

I am sad that I have to push myself as hard as i do to feel normal ... and I feel like I am looked upon as someone fat and lazy ... not someone tired and trying.

Don't feel bad, you have to push for information. I've had a few doctors and they all call me with results and say "your test came out excellent." I then ask "I would like the numbers specifically" and then they will given them to me.

Someone told me a long time ago to get every copy of my labs as I go along. I never did that figuring they were all in my file copy. Well, my long term endo retired 2 years ago and I paid the $75.00 fee to have my medical records copied and sent to the new endo. Well, it appears that a few things are not in the file. So I wish I had collected all my paperwork.

Some doctors are cooperative and others are not but the deal is, you never know what's going to happen to you, to your doctor, to anything and it's good to have your important records in your personal files.
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