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Thyroid Cancer

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LAURAS-B
Posts: 666
1/23/13 10:39 A

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They should put you on T3 medication also. Where are you falling at in the range? Most endos don't like to put you on T3 medication too, but it will help you out so much! It will give you energy and make you feel so much better!


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CHARLOTTE84078
CHARLOTTE84078's Photo Posts: 14
9/14/12 3:13 P

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Hi, I had my thyroid removed in february, I was diagnosed with hoshimotio when i was 19, my thyroid threw out the years grew so large it took 6 hrs to remove, they found the cancer when they took it out, right now I'm on 200mcg synthroid I feel like crap all the time, I want to sleep all the time, I'm on track with weight loss for now but I always gain it back I'm hoping sparks will help.


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RUBYYR
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1/15/12 3:37 P

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Hi Jenn,

It sounds like you've been going through a lot! Let us know how you are doing! You can get some information and additional support at www.thyca.org There is an email list serve where you can receive support. The link should be on that site. There is also support for family members on that site, including regional meetings (free) where you can as questions and meet others who have gone before you. Sometimes family and friends do not know how to offer support - sometimes they are often just as afraid as we are but don't know how to show it. They may worry that sharing their fears will make you feel worse. But everyone is different.

It's challenging to deal with thyroid cancer and tiny children but it can be done! Hang in there and let us know how you're doing!

Ruby

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


JSIM92480
JSIM92480's Photo Posts: 27
1/4/12 3:23 P

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Hi I'm Jen and 31 years old. When I was 29 I was diagnosed with Thyroid cancer and promptly discovered I was pregnant after I had had my thyroid completely removed. So all other therapy was postponed.. But I will be having it in two weeks. I'm so stressing. A new baby, a 4 year old, and a husband who does not know how to be supportive... Anyone else need to win the lottery? :)




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MADHILDE
Posts: 299
10/6/11 7:18 P

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Hi Sunset Mistress,

I'm so glad you've joined us! Sorry I wasn't around to welcome you when you most needed someone. I am here now, so let us all know how you're doing, and don't hesitate to ask for advice, etc.

Mad


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SUNSET_MISTRESS
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7/31/11 2:51 P

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Hi! Where is everyone??? I was hoping to find a support group somewhere, but I see no one's posted for a while. Anyways, I am 25 years young and I have papillary thyroid cancer. I had my surgery in March, they removed 55 lymph nodes, a jugular vein, my thyroid, and almost had to cut a vocal cord, but thankfully, did not. The first day I saw my endo, he pulled strings and got an ultrasound and biopsy. Two days later I was told I had cancer, and 4 days later he performed surgery. How's that for a whirlwind??? I'm just now getting my first round of radiation on Tuesday (it was postponed for a while. The scan that my GP did that found that thyroid lumps used contrast dye with TONS of iodine in it) and am kinda nervous about it. I've been on the LID for 2 weeks and 2 weeks without my Synthroid, so I'm eager to get cheese and medicine back in my life. Other than that....I'm jsut trying to take it easy, make smart choices, and after I *have* a metabolism again, will be working on trying to lose all this weight I've gained over the years from misdiagnosis/mis-medication/fatigue/and depression. :) YAY for gettin' healthy!


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ALNSWFE
ALNSWFE's Photo Posts: 165
7/26/11 2:29 P

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Welcome to our team Hurricanelaurie! I hope you find it as useful as your sister has and the rest of us.

emoticon emoticon

Stephanie
Co-leader of the Spark Arizona team
Leader of the Thyroid Cancer team


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HURRICANELAURIE
HURRICANELAURIE's Photo Posts: 55
7/26/11 2:05 P

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Hi Everyone! Not new to Sparkpeople, but new to this group. My sister, LKKOTH, is a group member and I thought I would follow suit...just like I did with Papillary Thyroid Cancer 3 years after her. At this time, I am doing well, according to my F.N.P. I am not as proactive as my sister and most of y'all on here. I just take it as it comes, I guess. In January 2012, I will be cancer free for 5 years. Maybe I can learn a little more, eh? Glad to be a part of this group!



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ALNSWFE
ALNSWFE's Photo Posts: 165
4/5/11 12:43 P

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Currently there is not a thread for that. Is that something you would like to see? I would be more than happy to create one.

Stephanie
Co-leader of the Spark Arizona team
Leader of the Thyroid Cancer team


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ALNSWFE
ALNSWFE's Photo Posts: 165
4/5/11 12:39 P

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emoticon Al ! I hope you find out team to be helpful and inspiring!


Stephanie
Co-leader of the Spark Arizona team
Leader of the Thyroid Cancer team


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CPTJSPARROW7
Posts: 2
4/5/11 12:03 P

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Well, a friend convinced me to join up, and I figure if you're going to do anything, might as well do it all the way or why bother right?

Just a quick introduction - I was diagnosed last year and it really came as a surprise...doc told me that given my gender/age/current health conditions the chances of cancers would be less than 1%. I'm currently in what my doc jokingly calls my "detox" phase getting ready for my 6 month scan.

Just wanted to shout out, see what advice people have about dealing with life as it is given our situations and try to be a supporting brother in arms fighting the good fight!

Thanks!

Al


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LIZZIEWHISLER
LIZZIEWHISLER's Photo Posts: 61
3/10/11 7:35 A

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Thank you for the welcome. Is there a particular thread in this group where people check in daily to report they've done their exercize and food logging? Kind of a way to be accountable?



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ALNSWFE
ALNSWFE's Photo Posts: 165
3/9/11 11:51 P

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emoticon

Stephanie
Co-leader of the Spark Arizona team
Leader of the Thyroid Cancer team


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JOYFUL711
JOYFUL711's Photo Posts: 1,625
3/9/11 11:41 P

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I am proof that it can be done, but it is not easy, especially since I also had a hysterectomy. It is MUCH easier to control the weight than it is to lose it once you have let it get out of control (voice of experieince here). Congrats on 12 years free of cancer! I am three years out, and feeling blessed.


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ALNSWFE
ALNSWFE's Photo Posts: 165
3/9/11 10:23 P

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emoticon to the team Liz! I too had the works done when I had my thyroid removed. My levels have been mainly low as well, they did spike at one point but my new doctor brought them back down. Good luck on your weight loss journey and yes the thyroid does make it harder but according to my doctor it can be done.

Stephanie
Co-leader of the Spark Arizona team
Leader of the Thyroid Cancer team


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LIZZIEWHISLER
LIZZIEWHISLER's Photo Posts: 61
3/9/11 10:17 P

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Hello, I'm new. I was successfully treated for thyroid cancer 12 years ago (thyroidectomy, radioactive iodine treatment--the works-- and it did work!) But I went looking for this group when my endo sent me back to my family doctor--she said he can take care of me from now on since it is unlikely the cancer will ever come back. His test results show my thyroid hormone needs to be decreased 8o(. I decided I'd better start limiting the calories and increasing the exercize now--before the new lower dose takes over my metabolism! I have used Sparkpeople for years now and rely on this site to keep me fit. But it will be nice to have some support from others who go through the fluctuations in the hormone imbalances --only 3 months ago my thyroid levels were too low--my hair was falling out and I was having other symptoms of being hypo--at that time the endo increased my medication. Now they are going to lower it to a dose lower than it was when I had those problems. But I spoke to my gynecologist today and she agrees with the regular doctor's decision (our medical records in this system are all on computer and she had read my computer screen before I went in for today's exam.) It was nice to have her input--I feel better about accepting the lower dose, but keeping the weight gain at bay is going to be tough! -Liz



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ALNSWFE
ALNSWFE's Photo Posts: 165
1/20/11 12:02 A

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Sorry everyone for not being around but I am back will start checking in more frequently from now on. First off a big welcome to our new members, I hope you are finding the help and support that you are seeking.

Stephanie
Co-leader of the Spark Arizona team
Leader of the Thyroid Cancer team


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RUBYYR
RUBYYR's Photo SparkPoints: (33,360)
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1/6/11 3:03 A

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You are welcome Kandi.
I'm glad my explanation was helpful to you. I've posted in the past on the blood testing for annual checks so as you get closer to the time for testing you can read up on it. It is so confusing and the unknown is always scary - especially when a diagnosis of cancer is involved. Let us know how you're doing.

Edited by: RUBYYR at: 1/23/2011 (23:58)
“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


OKFROG69
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1/3/11 2:38 P

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Ruby,

Thanks for the great information. You gave me more information than my Endo lol. My levels have never been in a hyper state for more than a couple of weeks they always seem to be Hypo. Hopefully they will get it straighten out pretty soon.

I'm feeling better just talking with people who have been thru the same stuff.

I don't ever recall having to high of a dose I have never had any heart racing ect. Mainly to low so I'm always tired. They did get me to a point where I was feeling pretty good but then they lowered my dosage again. Now it's raised again so I will retest in 6 weeks.

Thanks for all your help Kandi



RUBYYR
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1/2/11 1:45 A

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I'm glad you're seeing an endo. Make sure to bring all your questions to your appointment and if you don't get adequate answers, you may want to shop around for someone new.

My meds are continuously monitored and adjusted fairly frequently, it seems. This has been going on since my surgery in 2002. Right now I take one pill per day and I'm adding another 1/2 once a week. Don't worry about the milligram dosage, it's different for everyone.

What specifically is bothering you about your meds? I agree, that the too high dosage of meds causes awful hyper-thyroid symptoms. I hate that heart jumping/non-sleeping/lump-in-the-throat feeling. I was kept at a pretty hyperthyroid dosage for the first 5 years but the TSH goal has been slightly increased lately.

I know it's a bit confusing but I'll give a try to clarify the levels.

HYPER-thyroid is a low TSH - taking high dosages of synthroid will make the TSH low.

HYPO-thyroid is a high TSH taking too little synthroid (or none for testing) makes the TSH go high.

TSH is Thyroid STIMULATING hormone and when it rises, it causes thryoid cells to start to produce thyroid hormone. So if you are going hypo for testing, your pituitary gland (that makes TSH) starts sending out TONS of TSH trying to get your thyroid glad to start manufacturing thyroid hormone. but if you have no thyroid gland (or if it is not working properly for some other reason) the thyroid hormone does not get produced.

On the other hand, when you take large dosages of synthroid, the circulating synthroid does not stimulate the pituitary glad to produce thyroid hormone because there is already enough in the blood stream. Since the pituitary glad does not make any TSH in this case, there is nothing to stimulate any left-over thyroid cells to produce anything.

Basically after thyroid cancer we want to be on the HYPER-throid side to avoid stimulating any thyroid cells that may have been left by surgery or RAI. If we take enough synthroid, then any thyroid cells that may be around will be suppressed by the high levels of synthroid. Does that make sense?

If you let me know any areas of confusion, I'll try to clarify for you. It is kind of crazy when high means low and vice/verse!

OK, that was a lot of writing, I hope that helps!

Ruby

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


ALNSWFE
ALNSWFE's Photo Posts: 165
12/30/10 12:10 P

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emoticon to our team OKFROG! I hope you find our team to be extremly helpful on your journey. At one time or another we have all experienced what you are going through so you are among friends here. If you have any questions or just need to vent then by all means you are welcome to do so with us. Again welcome and I look forward to hearing about your progress on SP.

Stephanie
Co-leader of the Spark Arizona team
Leader of the Thyroid Cancer team


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OKFROG69
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12/30/10 9:11 A

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I do have an endo Dr that I see. It's kinda crazy I will be on 200mg Synthroid and my levels will be to low so she will have me take same dosage only 7 days a week then my levels are to high. It's confusing with too high being not enough and too low being to much......

I'm going to start tracking my water, food and exercise. Hopefully I can get it together holding myself accountable.

I really don't want to go off my Thyroid medicine to do the radioactive iodine again that was not fun.

How long have they been trying to stabilize your meds? Hopefully running on the treadmill will help my mood in turn helping get my levels where they need to be :).

No support group really, I've kinda shut myself down since I found out. I really only talk to my husband and our kids not much about the cancer.

I haven't tried Nutrisystem but I did do weight watchers several years ago after my kids were born it worked really well.



RUBYYR
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12/29/10 10:59 P

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Welcome OKFROG...

It is so scary to be diagnosed with cancer. The unknown is hard as well. I think many of us can relate to your hesitation about getting rechecked because we've gotten the bad news once already.

The good thing is is that thyroid cancer can be tracked, there are good measurements for the papillary and follicular types and if the numbers start to rise, there is treatment.

I'm sorry to hear that your meds have not yet stabilized. Neither have mine. Just when I think I've found "MY DOSE", it changes. Such is life. Hormones can cause the dose to change, birth control pills, menopause, whatever. Weight loss and gain can also cause the dose to need to be changed.

Are you being followed by an endocrinologist? Is your TSH level where they want it to be? It's not always thyroid that causes weight gain - sometimes it's depression and being depressed about a diagnosis of cancer is kind of common. Do you have some support, someone to talk to about this condition?

As far as weight loss and thyroid levels, I have noticed that I can lose weight just fine, when I stay within my calorie range. When I go above it - the weight goes up.

I really like SP's weight range recommendations and I hope that you are successful here at SP.

I've been very busy with other parts of my life lately and have not been here too often but I'll try to check back more frequently.

Been thinking about trying nutrisystem to use for some meals to try to jump back on the wagon. Has anyone tried it?

Happy New Year everyone!



“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


RUBYYR
RUBYYR's Photo SparkPoints: (33,360)
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12/29/10 10:57 P

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Welcome OKFROG...

It is so scary to be diagnosed with cancer. The unknown is hard as well. I think many of us can relate to your hesitation about getting rechecked because we've gotten the bad news once already.

The good thing is is that thyroid cancer can be tracked, there are good measurements for the papillary and follicular types and if the numbers start to rise, there is treatment.

I'm sorry to hear that your meds have not yet stabilized. Neither have mine. Just when I think I've found "MY DOSE", it changes. Such is life. Hormones can cause the dose to change, birth control pills, menopause, whatever. Weight loss and gain can also cause the dose to need to be changed.

Are you being followed by an endocrinologist? Is your TSH level where they want it to be? It's not always thyroid that causes weight gain - sometimes it's depression and being depressed about a diagnosis of cancer is kind of common. Do you have some support, someone to talk to about this condition?

As far as weight loss and thyroid levels, I have noticed that I can lose weight just fine, when I stay within my calorie range. When I go above it - the weight goes up.

I really like SP's weight range recommendations and I hope that you are successful here at SP.

I've been very busy with other parts of my life lately and have not been here too often but I'll try to check back more frequently.

Been thinking about trying nutrisystem to use for some meals to try to jump back on the wagon. Has anyone tried it?

Happy New Year everyone!



“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


OKFROG69
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12/29/10 11:58 A

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I am new to this site and have been reading several of the posts. I have thyroid cancer two kinds. I had my thyroid removed 10 months ago and still do not have my meds where they need to be. I'm exhausted all the time, have gained almost 50 pounds, and the Dr's just seem to put it off like it's no big deal. I will go in to see if they got all the cancer in about two months blah, most days I don't even want to know. I'm going to try the Spark site and see if I can keep myself motivated to get some of this weight off. Just wanted to say it was nice knowing other people feel afraid with thyroid cancer and that I'm not alone.





ALNSWFE
ALNSWFE's Photo Posts: 165
12/19/10 2:34 A

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Welcome to all our new members!!!

emoticon emoticon

Stephanie
Co-leader of the Spark Arizona team
Leader of the Thyroid Cancer team


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ALNSWFE
ALNSWFE's Photo Posts: 165
10/14/10 2:44 P

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Stephanie
Co-leader of the Spark Arizona team
Leader of the Thyroid Cancer team


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CYNDERRELLA
CYNDERRELLA's Photo Posts: 5
10/14/10 2:36 P

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I was diagnosed with Thyroid Cancer last September...had my second surgery in November and RI treatment in January. Now I am trying to lose the weight I gained while off work. My problem now is trying to get back to exercising...it seems as soon as my heart rate goes up....my mouth gets so dry I can hardly breathe...does anyone else have this problem?


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ALNSWFE
ALNSWFE's Photo Posts: 165
10/11/10 4:49 P

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Hello everyone! I just wanted to say hi and let you all know the short version of my story(the long version will be in another post). I was diagnosed in 2006 while pregnant. I had my thyroid removed 3 weeks after she was born. I have been taking my meds wrong the last 4 years so my doctor and I are working on correcting that. So thats my story :)

Stephanie
Co-leader of the Spark Arizona team
Leader of the Thyroid Cancer team


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RUBYYR
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7/1/10 1:51 A

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Welcome to the team JSBECKER & YANETAY! Just jump in any ole time :-)

emoticon

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


JSBECKER
Posts: 1
6/28/10 12:16 P

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Hello! I am a 3 year thyroid cancer survivor. I have 2 sisters and 4 aunts that have had it also! Thank goodness my sisters doctor told her to alert her family because it is highly hereditary. Yes it is highly curable if you find it and treat it. Another site that helped me when I took the RAI is thyca.org. They have a cookbook that has some good recipes. As with any cookbook, many of the recipes were trial and error. Good Luck to everyone!



YANETAY
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5/4/10 6:55 P

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Hi,my name is Janette and I am originally from the UK, but now live in the US. I was diagnosed with thyroid cancer in 2001 while living in the UK. It was detected only due to my having strep (they found the tumor when they checked my glands). So 2 surgery's later my otherwise healthy thryoid is gone and I am moving to the US. Since then, nothing has returned except the weight that I gain and lose. Trying to do something finally about that and lose that for good so that cannot return too.


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NEFERKAI
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3/25/10 5:36 A

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I'm Jen from Sydney, Australia.

Just thought I would drop in and say hello.

I had a TT 6 years ago after having 2 very aggressive goiters doubling in size every month (they had been stable for 4 years and quite small) located in left and right lower quadrants. I had to sleep sitting in a chair because lying down closed my windpipe. 12 fine needle biopsies all came back inconclusive - one goiter was full of fluid and the other quite solid.

Was referred by my endo to a Professor who specialised in Thyroid surgery of all kinds and after he had read through my file just said what are you doing next Wednesday (it was Friday) and he booked me in for a TT. He did successfully transplant 2 of the para-thyroid glands.

I had to wait 1 month for pathology results which clearly showed stage 1 of both papillary and follicular cancer present in the "healthy" thyroid tissue of both left and right upper quadrants.

Did not have RAI. Glad of that.

My goiters may have actually saved my life cause if they weren't there I would not have had the surgery at such an early stage.

Still struggling to sort out my dose which ranges from 250 - 100, you would think after 6 years it would be sorted out. Boy does it affect my weight, hair loss, foggy brain, low energy, mood, sleep patterns, I'm either hot or cold or both at same time, dizzy, headaches, thirsty, hungry.

I have to take Vit D every day (this is a very recent thing). Calcium is OK at present but have had to supplement sometimes.

Still have some problems with my voice, it goes on me and it hurts to sing (range and strength has reduced substantially), throat goes into spasms where I can't swallow, freaky stuff. Had all that checked out last year by an ENT 6 months ago and he said its not uncommon with my medical history.

Its ironic to get diagnosed with cancer post surgery because I didn't have the support around me that I would have if I was diagnosed first. I really wasn't prepared for that.

I even asked my surgeon if they got it all, as you do, and his reply: "Well when you die and if they do a post mortem and they find no cancer in your body well then yes we got it all". Don't know whether this was a tongue in cheek response but it makes you think. It makes me think back to his comments when I have my full blood tests done every year and wait to hear that everything is within normal range and to hear Negative.

Life is full of challenges and how you chose to deal with them determines your destiny.

Edited by: NEFERKAI at: 3/25/2010 (05:58)


KARENO5
KARENO5's Photo Posts: 351
3/19/10 10:40 P

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Well, I first posted here mid January when I just had gotten my diagnosis of thyroid cancer. A lot has happened since then. January 28 I had the thyroidectomy. I stayed off the synthroid till I had my RAI on March 12. I started my synthroid again on March 15. I am starting to feel better. I actually have started exercising on the treadmill again this week. I will sure be happy when I can go back out in public again and also when I can start driving again.

So those of you that have had RAI (I had 100 mCi) How long afterwards did you wait to go out in public and also how long before you felt alert enough to drive safely again?

Karen

Northern California

Was in maintenance for 4 years, now working hard to get back there. One step at a time.....


ERICKAB
ERICKAB's Photo Posts: 66
3/19/10 5:16 P

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Hey guys. I have been on 150 Synthroid for about 5 months after my results came back Hypo again. I didn't know where to post this so I figured here was better than nowhere. I was wondering if anyone has LOST weight on Synthroid? Everywhere I check are these horror stories of weight gain...but I have lost a whole bunch of weight without giving my best effort. I exercise and eat well but have horrible spurts of bad habits. I have lost about 50 pounds since my surgery last May. I am not upset by any means but I was wondering if anyone might have an idea why I have been fortunate enough to receive opposite then normal affects?


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KARENO5
KARENO5's Photo Posts: 351
1/18/10 12:16 A

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Thanks it is reassuring just having someone to ask questions about the whole process- people who have gone through the same experiences. I will check out the yahoo group tonight.

Tomorrow I hope to get in touch with the surgeon, and will go from there.

Karen

Northern California

Was in maintenance for 4 years, now working hard to get back there. One step at a time.....


GEOKATGRL1
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1/17/10 6:24 P

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For those of you who have not found this site yet I want to post this link:

health.groups.yahoo.com/group/Thyca/

This group was (and still is) a God-send for me while dealing with all of the complex issues of thyca. I cannot recommend it highly enough.

Best wishes and hugs to everyone!

Rene C.


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BELLE52877
BELLE52877's Photo Posts: 174
1/17/10 4:43 P

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Karen05

So sorry to hear about your diagnosis. You have every right to be scared! That being said I am Glad you found us and I hope we can provide some support as you begin your cancer journey! Thyroid cancer is cancer. Plain and simple. But, for many the treatments DO work and as you can read through the posts there are ups and downs (as with anything else in life).

If you have questions you can post them or just scan the postings. We are here for you! Try and stay positive :)

Shelly (Belle)

A dream is a wish your heart makes, when your fast asleep....


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KARENO5
KARENO5's Photo Posts: 351
1/17/10 1:18 P

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I'm new to the team. I found out this past Friday that I have thyroid cancer. My doc said it is "highly curable" and not to be afraid, but how can you not be afraid when they throw that "C" word at you? Anyway, my name is Karen. I live in northern California.

Karen

Northern California

Was in maintenance for 4 years, now working hard to get back there. One step at a time.....


BELLE52877
BELLE52877's Photo Posts: 174
10/6/09 3:00 P

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Welcome Glenda :)

You are in the right place for support when it comes to thyroid cancer. There are some great people on this team who have had many different experiences. Feel free to post questions or updates.. or whatever you want really! It is quite normal to be in shock when faced with cancer. If at all possible a good idea (at least I have found it to be good for me) is to have an advocate to go with me to my visits. Sometimes the news can be overwhelming and it is good to have a second pair of ears to help you sort it all out. Best of luck and I hope you are healing well :)

Shelly (Belle)

A dream is a wish your heart makes, when your fast asleep....


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BOOMER59
BOOMER59's Photo Posts: 30
10/1/09 8:40 P

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Welcome GLABARBERA. I'm sorry to hear about your health problems. I had my thyroid out on 10/29/08 and can sympathize with how you may be feeling right now.


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GLABARBERA
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10/1/09 11:59 A

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Hello, I am new to the team. I had my thyroid out last Friday due to a large tumor with several nodules. Surgery went fine. Pathology report back today and it was cancer. I was in too much shock to ask many questions. I go into the doctor next week. He did tell me I would take the radioactive iodine and have more scans. Appreciate any and all support or information. Thanks. Glenda


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BELLE52877
BELLE52877's Photo Posts: 174
9/9/09 7:30 A

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Heidi,

Welcome to the group.
If you have questions this is the place to ask. I agree with you, no matter what anyone tells you this IS a scary thing, and it is OK to feel that way about it. Ruby mentioned the thyca website and I agree that is a great place for a newly diagnosed person to get information. :) Keep us posted. We are here for you!
Belle

Shelly (Belle)

A dream is a wish your heart makes, when your fast asleep....


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HIHO1111
HIHO1111's Photo Posts: 133
8/23/09 7:54 P

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Thanks Ruby, I am a little better now than I was. I had a rough up and down weekend. I am getting prepared to go for surgery and take some time off from work. I think right now I am nervous about going without pay for possibly two months. That's what the surgeon said to expect. It may be less but to plan for that. I have read a lot and mostly know what to expect from the surgery as well as the recovery. I know everyone is different but I always take the hard way. I have had 4 surgeries in my past already and that is the way it always seems to work out despite my best intentions:) Thank for all the support. I will be in touch. Heidiemoticon


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RUBYYR
RUBYYR's Photo SparkPoints: (33,360)
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8/22/09 8:22 P

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Hello to the newest posters! I've sort of been "away" for a bit - and I see some new faces!

Heidi - it IS scary. The whole thing and the not-knowingness is scary. Make sure to ask LOTS of questions and don't stop til you get answers you are satisfied with.

You can ask here, or at Thyca.org and make sure to ask your endo! Once you get set up with the nuclear medicine MD, ask more questions there. It really takes a lot of the scary-ness away because so much of the fear is due to the unknown.

Know that many of us have gone before you and we can absolutely relate to your feelings and worries cuz we've been there too. Let us know how we can support you, ok?

Ruby

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


HIHO1111
HIHO1111's Photo Posts: 133
8/14/09 8:37 P

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Hello everyone, I wanted to introduce myself. I was diagnosed with papillary carcinoma and informed yesterday. my TT is scheduled for Sept 16th. The RAI is not yet scheduled. I don't care what anyone says it is scary to not only me but my entire family. Heidi


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YORKJAG
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7/5/09 7:35 P

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I have not been on for some time, but wanted to say hi to everyone. Welcome to all those who came after me.

Age: 29

Location: Canada

Goal: get healthy and reach 140 lbs.

Mini Goals:

First 10lbs - Special Origins product. Goal Met

Reach 189.5 lbs - Hair cut . Goal met

Reach 173 lbs – New workout game or fitness equipment.

Reach 156.5 lbs - New workout outfit

Reach 140 lbs – Spa Day



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SURVIVORGAL
SURVIVORGAL's Photo Posts: 21
5/5/09 2:24 P

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Hello! I am so excited to find this group! I had a TT in 2004 followed by RAI. I've been losing the synthroid battle for the past year and a half when my doctor decided my levels were a bit high and reduced my synthroid...even though I told him I felt worse on the lower dosage. Finally my TSH went up a good bit and I'm back on the dose that makes me feel like a human again! Hopefully that won't change anytime soon. Am still battling the weight gain though. While on the lower dosage I gained 20 pounds, which I couldn't really afford to do. It is frustrating when you feel like you have to start all over. Now I've been told that I have pre-cancerous cells in my colon. Ugggghhh!!!! Oh well, I'll just stand strong, keep a positive attitude, and pray that my followup test is negative. Thanks to all of you who gathered here to offer support. I hope I can do the same. CA


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RUBYYR
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4/30/09 8:16 P

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Hi Ronda,

Please let us know how we can support you in your weight loss journey. Are you tracking your food? Exercising? Have you found a stable thyroid replacement dosage yet?

Ruby

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


BELLE52877
BELLE52877's Photo Posts: 174
4/29/09 11:41 A

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Good luck to you Rhonda!

Shelly (Belle)

A dream is a wish your heart makes, when your fast asleep....


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RLBANKS
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4/27/09 3:53 P

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Hi,
My name is Rhonda and I am from Ontario emoticon. I was diagnosed and underwent a TT in July- Aug 2008 and underwent RAI in Oct. Life has pretty much returned to normal, all except my weight. I had extra weight when I started this journey and now 8 months later and 25 lbs heavier, I am at my wits end.

I am a member of WW and a gym but am still fighting the same battles. I have also been a member at SP for a couple of years but fell by the wayside when I had the lovely C diagnosis. I am now ready to do whatever it takes to lose the weight and keep it off.

Rhondaemoticon

Edited by: RLBANKS at: 4/27/2009 (16:26)

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BELLE52877
BELLE52877's Photo Posts: 174
2/16/09 4:42 P

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Welcome welcome to ALL new members! So glad you found us. I too can't believe how this group has grown so quickly! It is so very exciting =) Keep up the hard work everyone. No matter how long it takes, stay positive and know that there is support here if you need it.

Spread the spark!


Shelly (Belle)

A dream is a wish your heart makes, when your fast asleep....


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RUBYYR
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2/14/09 12:21 A

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emoticon emoticon emoticon emoticon

Welcome Tammy!

I am so thankful to Shelly (Belle) who started this team. I found her a few days later and I am so grateful to see how it has grown in just a few short months.

Although I visited the thyca.org website a lot when I was first diagnosed, I don't find I need that type of support at this stage. The focus of SP is healthy living & moving through whatever it takes to get there. Emotional eating over stress is huge issue and a cancer diagnosis certainly causes stress!

I get a lot out of reading other peoples success stories and it is so nice to not feel like the only one.

Welcome to our little corner of SP :-)



emoticon emoticon emoticon emoticon

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


RUBYYR
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2/14/09 12:19 A

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emoticon emoticon emoticon emoticon

Welcome Tammy!

I am so thankful to Shelly (Belle) who started this team. I found her a few days later and I am so grateful to see how it has grown in just a few short months.

Although I visited the thyca.org website a lot when I was first diagnosed, I don't find I need that type of support at this stage. The focus of SP is healthy living & moving through whatever it takes to get there. Emotional eating over stress is huge issue and a cancer diagnosis certainly causes stress!

I get a lot out of reading other peoples success stories and it is so nice to not feel like the only one.

Welcome to our little corner of SP :-)



emoticon emoticon emoticon emoticon

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


ACWITNESS
ACWITNESS's Photo Posts: 78
2/13/09 8:39 A

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Hi Tammy,
Welcome to the team and to SP! It's great to have you here. The members here are wonderfully supportive and it is definitely a great place to come when you need help.
I've been with SP for over a year now, and had reached my goal weight in time for a cruise the first week of December. I found out I had cancer a week before I left and had surgery a week after I returned. I'm now 16 days off medication with RAI scheduled for the 24th. I've put back on about 6 pounds, but really trying to stay active to keep that number as low as possible. I know that everything I've learned at SP and all the resources here will help me get back to my magic number once this is all over. And I just know that SP will help you achieve your goals as well. As you said, we've been there/are there, and just keystrokes away when you need us. Again, welcome and God's best to you!

Debbi
"It's not heaven yet!"



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ALASKAN
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2/13/09 12:08 A

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Hello Rhonda
emoticon on your new marriage, wish you and your husband many happy years together. Have fun on your honeymoon.

My thyroid had the early stages of cancer on it and that was over 5yrs ago. It can be scary, but I believe you will be fine.

Just take one day at a time and to live your life to fullest. If it scares you, come bad here and read these postings and it will relax you knowing that the rest of us went through what you are about to. You can learn to relax, breathe, take a deep breath and tell yourself "I will make it and everything will be okay." If you want someone to talk to you before you have it done, I'm sure that anyone will help you. We all care about you and are like family here too. Take care care, talk to you soon and relax. My name is ERNA and I will be here anytime, just let me get back to you.

Live 1 day at a time and live it to the fullest. Wish you all the best that life has to offer.... Stay focused, positive and it will get you where you want to be or done in life itself.
My name is ERNA



I'm leader of a new team : "A Safe and Happy Home For Grievers"

www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=22259


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TAMYANKEEMAC
Posts: 51
2/12/09 10:40 P

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I am fairly new to this website (day 3) and I happen to come upon this spark team. What an answer to silent prayer. I too was given the diagnosis of thyroid cancer in 2007. Just to hear the word cancer in any form is scary. They removed the entire thyroid and took all the cancer with it. I went under the radioactive therapy to make sure there wasn't anything else floating around in my body.

I got a clean bill of health again this past October but have a life of taking the synthroid. This group is such a blessing. Just to know that I am now just a keystroke away from people who have "been there and done that". I can't tell you how the tears want to fall right now.

Don't get me wrong, my family is very supportive, but sometimes you just have those days.

Thank you for being there. I am so excited about this group and about this website.

Tammy


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RUBYYR
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2/10/09 2:01 A

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Hi Rhonda,

Debbi pretty much covered the major details. The thought of the surgery was pretty nerve wracking for me but it turned out WAY better than I thought it would be. I had minimal discomfort - and I was able to control it with tylenol.

After my surgery I was not given any thyroid replacement and I had the radioactive iodine maybe about a month later. A week after the treatment, I had a scan and after the results were back, I was able to go on thyroid pills. After a couple of weeks I was feeling back to normal.

Different physicians will recommend different treatments, including different dosages of the radioactive iodine - or no radioactive iodine at all.

My best recommendation to you is to visit the thyca.org website (on Debbi's post or the the other thread I posted on) and read about everything so you will be armed with knowledge & questions when you have your appointment.

Getting a diagnosis of cancer is so scary, it's like a big unknown and can be so very lonely. Even though thyroid cancer is "easy to cure" and blah blah blah, it is still cancer and it still is very scary to hear.

Let us know how you are doing, ok?

Hang in there - we're in this together.

Ruby



“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


ACWITNESS
ACWITNESS's Photo Posts: 78
2/9/09 8:58 A

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Hi Rhonda,
Welcome to the team. So sorry to hear of your diagnosis, and so soon after your wedding. And you are right - cancer IS a scary word, even when told it is "easy to deal with". I sometimes wonder how the people who say it is no big deal would feel about having it themselves. Anyway, getting GOOD information will be helpful for you. Check out thyca.org/index.htm. This is a great site!

As for what to expect, of course, everyone is different, but the general path seems to be surgery to remove the thyroid, followed by radioactive iodine treatment to rid the body of any remaining thyroid cells left behind after surgery. The above link has info about all of that.

My surgery was 10 days before Christmas, and by Christmas I was feeling quite well. It was not very painful and recovery was quick. This seems to be typical for a lot of people.

I started the preparation for the RAI treatment two weeks ago, and should be done with the whole process by the beginning of March. Some folks do this very soon after surgery, and I've heard of others who have waited as much as 6 months.

When you see your surgeon, be sure to discuss your trip with him/her. He may be quite willing and able to work around your schedule, perhaps doing surgery before your trip and doing RAI after you come back. It will be very helpful to write down a list of all your questions before your appointment. It is a lot less scary when you know what to expect.

Try not to worry TOO much - I know easier said than done. But the good news is that the cancer WAS found and it IS treatable. There are some wonderful people on this team who are willing to come alongside and support you through this. I know because I've been taking full advantage of their encouragement ;)

Debbi
"It's not heaven yet!"



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RHONDASTIMSON
RHONDASTIMSON's Photo Posts: 35
2/9/09 7:09 A

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Hi, my name is Rhonda and I was diagnosed with thyroid cancer Friday morning after having a fine needle biopsy the Friday before. My PCP told me not to "freak out" because it is very operable and the tumor is very small, but I have no idea of what to expect and what kind of things I am in for. Everyone else has said it is nothing to worry about, it is no big deal, but no matter how easy it will be to take care of, it is STILL cancer and that is a very frightening word to me.

There has been a lot of cancer in my family, especially on my mother's side. There were 10 kids in my mom's family, and out of those, only 3 have NOT had some form of cancer (my mother is one of the cancer free, thank goodness). I have watched my aunts and cousins die from various different forms of the disease. It makes me very scared.

I guess the first stage right now is for me to have surgery. I am scheduled to see a surgeon who specializes in thyroid surgery on March 5th. After that, I am not sure what will happen.

One thing I am looking forward to is that my husband and I are planning to fly to Sweden in May. I am hoping that I will be well enough to still go. We were just married this past November, and it is a delayed honeymoon.


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RUBYYR
RUBYYR's Photo SparkPoints: (33,360)
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1/27/09 2:06 A

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Thanks for posting that link Debbi, I've not seen it before.

I had dried sour cherries that I ate during my RAI treatment. Kept my salivary glands working overtime.

Funny but I've not been able to eat one since. I guess I got a bit sick of them.

Take care during your RAI treatment & stay in contact with us. We know what it's like going hypo and it's so helpful to have others around who know what we're going through.

Ruby

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


CAROEDEN
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1/25/09 5:33 P

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i actually did stop using my alcohol-y mouth wash. it seemed logical since it's so drying. i'll have to try with the toothpaste too.



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ACWITNESS
ACWITNESS's Photo Posts: 78
1/25/09 3:21 P

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Regarding taste and salivary glands, has anyone read this?
www.thyca.org/dental.htm
Was wondering if anyone tried it.
I go off cytomel this Wednesday and RAI is supposed to be 2/24. February should be a real fun month!


Debbi
"It's not heaven yet!"



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RUBYYR
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1/25/09 2:08 P

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I noticed I had very dry mouth after my 2 year post-op RAI scan. I've been concerned that the tracer dose may have caused this but really have no way of knowing for sure.



“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


CAROEDEN
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1/23/09 1:03 P

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Welcome Jessica!

I just had my RAI last week, so i can't speak to it like some of the others can, but, i do have some weirdness with my salivary glands and my tastebuds. i did the lemondrop thing, but i guess it's par for the course. I'm just hoping it goes away.


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JESSICARROT
JESSICARROT's Photo Posts: 208
1/23/09 10:52 A

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Hi,

My name is Jessica. I was diagnosed with Pap/Folicular thyroid cancer a year ago last November. I've been a sparker for a couple of years. I took a long break during my pregnancy/treatment and now I'm back to lose about 20 lbs. Since getting stable on Levothyroxine, I've lost about 10 lbs and 5 inches off my waist. I figure, if I really work at it I could get back to that illusive pre-baby weight.

BTW, does anyone here have damage to their salivary glands from RAI? Maybe there is a better place to post that, I was just curious. Mine didn't show up until about 5 months post RAI. Twice my jaw has swelled up and been sore when I ate and then it just goes away. I'm just wondering if this is something we can expect forever?


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BELLE52877
BELLE52877's Photo Posts: 174
1/15/09 9:11 A

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Welcome to the group MELROSE

I am sorry that you are having trouble getting your physician to be sensitive to your needs. Perhaps you should have a conversation with them about your concerns/fears, etc. If that doesn't work, it may be time to find a doctor who is more suited to take on your case. Don't worry about feeling silly, depressed, tired, or whatever else. We all feel that way ESPECIALLY when you have had your thyroid removed. It is a constant struggle to keep your body in balance with meds. Checking TSH every six months isn't that uncommon (my practitioner did that with me for the last decade to manage Hashimotos, before I had the cancer a couple of year ago)

I will be thinking of you :) Let us know how we can support you!

Shelly

Shelly (Belle)

A dream is a wish your heart makes, when your fast asleep....


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RUBYYR
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1/15/09 2:08 A

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Welcome to the team Melrose!

I know that I requested to go on a combination of cytomel & synthroid for a period of time. I found that it positively affected my mood.

However, later I became too hyperthyroid so I stopped the cytomel & increased the synthroid & all has been well ever since.

Have you tried mixing up your meds a little? What does your doc say about that?

It can be tricky getting the right dosage of cytomel when taken on a regular basis. It is a very fast acting (and very short lived) drug so it must be taken at the same time every day, in multiple doses.

It might be worth a discussion with your doctor.

Ruby

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


MELROSE587
Posts: 1
1/14/09 4:56 P

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Hello Everyone, I just joined up today and found this group. Maybe between team members and the internet I might get all my questions anwsered. My Doctor sure doesn't seem to understand all that I am going through. I had Thyroid Cancer in 1999, I had it completely removed and I have been fighting for sanity ever since. Symtoms, medications, depression, aches and pains all part of it. Why after 9 years can't I feel good? Well I am looking for any information, just got back from the dr's office today, I feel like a slug, all she said " well we just checked your tsh in July but if you insist we can do it today" Maybe I am just being silly, on top of so darn tired and depressed.


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RUBYYR
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1/10/09 9:35 P

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Welcome to Princess & York!

We're so glad that you found our team!

I'm in year 6 of being cancer free and continue to deal with annual testing.

Ruby

“Fall seven times. Stand up eight.” Japanese proverb

don't cry because it's over, smile because it happened. ~ dr. seuss


ALASKAN
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1/10/09 8:32 P

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PRINCESS- You are very welcome and I'm here for everyone. It is my pleasure to help.

As some of you know, I have had cancer 5 times and I'm a survivor. The last time I had cancer was in May 2003. The doctor told me I had cancer on my thyroid and it had to be removed. My doctor said it was in the early stages. So, I'm in my 5th yr as a cancer survivor again.

Edited by: ALASKAN at: 1/10/2009 (20:33)
Live 1 day at a time and live it to the fullest. Wish you all the best that life has to offer.... Stay focused, positive and it will get you where you want to be or done in life itself.
My name is ERNA



I'm leader of a new team : "A Safe and Happy Home For Grievers"

www.sparkpeople.com/myspark/groups_i
ndividual.asp?gid=22259


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