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Old 05-16-2011, 07:42 PM   #1351
mrsklamc
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I'm doing well, but my 3 year old nephew fell today and has a minor skull fracture and a bad concussion. Prayers would be appreciated, from those that pray!
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Old 05-17-2011, 09:45 AM   #1352
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Micayla, so sorry to hear that. Just said a prayer for your little nephew. Is this the one family you went to Disney with?
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Old 05-17-2011, 07:10 PM   #1353
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welcome CanadianPaco - sorry to hear about your dh job. I pray God will open up something new for him soon. Wishing him all the best. Its good to hear you are doing well with your check ups. Can I ask what your initial RAI dose was?
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My RAI was 100mcg. It'll be 5 years now. I have 2 nodes that they are following. I try not to worry - just live in the moment. Cancer and unemployment teaches you that!
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Old 05-19-2011, 10:34 AM   #1354
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** question about swollen feet / lower extremeties **

Okay -- I have another question for you all ...

As some of you know, I had Papillary Thyca - and had 2 of my parathyroid glands stollen during my surgery which left me not so luckily as a hypo calcimia, hypo parathyroid mess ... numbness (check) tingling (check) irritability (check) tired (check) IBS (check) you name it and ive been dealing with all sorts of *** new normal *** as I call it for me ... I deal with all these things on a daily basis and dont worry about them anymore so much but .....

recently as of 1 month now Ive been dealing with the WORST swollen feet and calves ever.. I remember last summer this same thing happened but it didn't seem to hurt as much. I am 18 months post surgery and so last summer would have been my first thyroid free summer and besides being hot as heck I dont remember the feet bothering me this much.

I went to my doctor 2 days ago and they told me this was because my thyroid level was so off -- they upped the synthroid and said its normal ... although they threw in a few words about being concerned with adema (sp?) and cellulosis or cellulitis? I swear, Im pissed at myself because I let them get away with talking in circles and talking about me and not to me and then I walk away feeling like Im not really ever going to get any better. My feet are cracking open from being dry and swollen and in very bad shape ... it almost seems like my skin is turning into something leathery and brown ** very different then what Ive ever known it to be ** and despite the fact that I am soaking my feet, keeping them up when I can and also putting bag balm on them at night with socks on to help keep moisture in ... there seems to be nothing that is making them soft and healthy again?

Anyone dealt with this? they will NOT give me lasix or any water pill either!
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Old 05-19-2011, 11:30 AM   #1355
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Shannon - I havent had any of those problems, but I know dischick had her parathyroids damaged too during surgery or removed because of the cancer?

I know they had to up her calcitrol but I think it was because of the numbness and tingling, I dont remember her mentioning swelling.

Were you seen by a regular dr. for your symptoms or an endocronologist. I always go to my endo for all the thyroid stuff as I think my gp dr. is clueless about this stuff.

What was your symthroid dose that they uped it from and to? I know it does take a while for your body to adjust to that. Are they doing any blood tests etc?

Wishing you all the best.
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Old 05-19-2011, 02:29 PM   #1356
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Hi - para's were damaged in surgery (doctor thought they were lymph tissue and sent it away to be tested only to find out it had para tissue in there)
unfortunately my state of VA says I cant sue for that -- but all my problems have been related to horribly low calcium not my cancer they cut out of me.
I see an Endo for everything BUT this swelling i went and saw a normal doctor for and they were the ones telling me to increase syn. from 200mcg to 225 mcg - i know it can take 6 weeks for it to do its thing and they actually thought about hospitalizing me but they opted to not do so because I am young and they think my heart is handeling my low blood calcium and high tsh alright for now. I think my tsh was 67 or something ... all i know is he said it was high which meant my thyroid was 6 times lower than it should be.?..
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Old 05-19-2011, 04:22 PM   #1357
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Quote:
Originally Posted by itsdisneytime View Post
Hi - para's were damaged in surgery (doctor thought they were lymph tissue and sent it away to be tested only to find out it had para tissue in there)
unfortunately my state of VA says I cant sue for that -- but all my problems have been related to horribly low calcium not my cancer they cut out of me.
I see an Endo for everything BUT this swelling i went and saw a normal doctor for and they were the ones telling me to increase syn. from 200mcg to 225 mcg - i know it can take 6 weeks for it to do its thing and they actually thought about hospitalizing me but they opted to not do so because I am young and they think my heart is handeling my low blood calcium and high tsh alright for now. I think my tsh was 67 or something ... all i know is he said it was high which meant my thyroid was 6 times lower than it should be.?..
If your TSH is/was 67 and this TSH has been going on for sometime, there is no doubt in my mind that this could be the cause of your lower extremity swelling.

I was only VERY hypo for 6 weeks. I read up on hypo at that time and how it causes swelling at the wrists and other joints. I had a pretty bad case of carpal tunnel by the end of the 6 weeks but fortunately it was reversed when my medication was resumed.

If you are at 67 on 200 mcg of Synthroid I'm not confident that a one-dose-up adjustment is going to cure you of this problem; however, it is the right way to go about increasing meds--you don't want to do too much too fast.

You really need to get your endo to aggressively manage this TSH issue. You should NOT be having to live like this.
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Old 05-19-2011, 09:04 PM   #1358
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Micayla, so sorry to hear that. Just said a prayer for your little nephew. Is this the one family you went to Disney with?
Sorry- didn't see this right away. Yes, he is one of my sister's twins. He was so adorable. Went on his first ride at Disney, got off, walked right up to his parents and said "May I please have my ears now?"

But he is doing very well...was pretty sick the first day but now they just have to keep his head safe while he heals. Thanks for the prayers!
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Old 05-19-2011, 10:28 PM   #1359
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Quote:
Originally Posted by mrsklamc View Post
Sorry- didn't see this right away. Yes, he is one of my sister's twins. He was so adorable. Went on his first ride at Disney, got off, walked right up to his parents and said "May I please have my ears now?"

But he is doing very well...was pretty sick the first day but now they just have to keep his head safe while he heals. Thanks for the prayers!
Saying a prayer for your Nephew.

Question>>>> How often do you all get your levels checked? I just had my 6 month check-up (had 1/2 my thyroid removed 1 1/2 years ago) and I forgot to get the bloodwork done. I have another appt (with an ultrasound) in 6 more months. Should I go get the blood work done now after-the-fact or wait until my next appt time?
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Old 05-20-2011, 06:58 AM   #1360
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Question>>>> How often do you all get your levels checked? I just had my 6 month check-up (had 1/2 my thyroid removed 1 1/2 years ago) and I forgot to get the bloodwork done. I have another appt (with an ultrasound) in 6 more months. Should I go get the blood work done now after-the-fact or wait until my next appt time?

When I was early on in my journey, I would have my TSH checked quarterly, and my thyroglobulin checked every 6 months. After my TSH appeared to be stable, I got it checked every 6 months. Only recently (this year), I have moved to a one year cycle. But I am 16 years after diagnosis. My endo only wants to see me once a year and we will do TSH, thyroglobulin, and ultrasound. Of course, if i feel "off" I am told to come in.
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Old 05-25-2011, 11:01 AM   #1361
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Since I am new to this board, I just came across this thread!!! What a great idea!!!

Here is a little background on me:

When i was 7 years old, I didn't grow an inch, so this was a concern to my doctor. They tested me and I was Hypothyroid. I lived with this for most of my life and my family doctor said that there would come a day that I would want my goider removed. The last couple of years prior to my surgery in 2007 my friend that worked for a neck surgeon would tell him about me clearing my throat and losing my voice all the time. She knew my situation with my thyroid. He told her that I needed to get in to see him as soon as I could. I had to fight with my family doctor to go see him and after a 3 month horror with a endocrinologist (who said I was diabetic or I needed gastric bypass surgery) to go to the surgeon. Within 3 weeks, I was scheduled for surgery. After my surgery my doctor came in and explained to me that my thyroid was the size of 4 knuckles on one side and 3 knuckles on the other and had a hook around my esophagus. He said I would have been killed in 6 months if I wouldn't have had the surgery.

After surgery I had no complications until I came home...I woke up 48 hours later and had tingling in my face and arms. Once I called the doctors office, I went back to the hospital. Here when I had my surgery, they had to take my parathyroid and my blood calcium had dropped. When I got there my number was at 2.2 (it should be around 7.0). I stayed another night in the hospital.

Now almost 4 years after surgery, I still deal with low calcium days (which I just take some Tums to help this) and I get my numbers tested every 8 to 12 weeks because I have had problems with consistancy of numbers. And with the amount of calcium I take (around 2500 mcg a day) I have problems with absorption issues. I just went to the doctor's the other month and she asked if I wanted to try a new medicine that is made for people with absorption problems. It is called Tirosint. I am taking less medicine now, and I am going back in July for a number check. It will be 3 months into my new medicine to see what my numbers look like.

Since I have been on the medicine, I have been feeling soooo much better!!!! I had been on Synthroid since I was 7, so I don't know if something happened that my body just wasn't absorbing the medicine (and I was letting it dissovle under my tongue). I can tell already that this new medicine is helping me.

I hope this helps some of you with some options since I have been through almost everything!! LOL!!!
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Old 05-27-2011, 11:15 AM   #1362
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Hi All, just checking in. mrsklamc - hope your nephew is doing better! Saw some posts about paras being damaged and in my most recent visit with my surgeon he informed me it doesn't look like mine will be working right ever again. They apparently did not re-implant properly. I am on calcitriol and if I don't take it I can tell. The tingling and numbness is ridiculous. And it's getting harder as my son gets heavier. So I must take it daily in order to feel right and will likely have to do so for life.

Coming up on my one year scan soon and dreading the diet. The timing sucks. We are going to Disney June 7-14 and I will start the diet June 15 for a scan the week of June 27. What sucks is we have a wedding on June 26 and I'm in the bridal party. I am thinking I will have to call the hall and let them know I'm bringing my own food. What else can I do? I can't cheat for the day right? I have no idea how much of an impact one small cheat would have but obviously I don't want to mess with my health.

The only other option is to push the scan back until 2 weeks after the wedding giving me 2 weeks to diet but then my endo will be out on maternity leave. And I'm really comfortable with her and not sure I want a substitute giving me my results. As I said, not good timing.

At my last endo visit she said my thyroglobulen was down to 700 (was 3000 last summer when I first found out about the cancer). Good news that its going down, I just can't believe it takes so long to get to 0.

Anyway, hoping everyone is feeling good!
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Old 05-27-2011, 12:16 PM   #1363
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dischick4778....I am on Calcitrol also...I notice when I don't take mine also. The other thing I take to help my calcium level is Calcium Cabonate (aka childrens Milk of Magnesia). I am to take a full tablespoon every day, but there are days that my GI system cannot handle that and I substitute a day of that a week with 2 extra strength Tums (1000mcg ones).

I have talked to my endo about the shots for hypocalcemia, and she said that they are not yet approved for long term use. They are finding that after 2 years of use, cancerous tumors are forming on the bones. So until they come up with a solution, I am on this regiment for a while.

I just know with my situation that I have to spread out my dosages of my Tirosint and my calcium because the calcium supplement will block the thyroid meds from absorbing into my body.

As soon as I head for a check up and get my newest numbers on the new medicine, I will check in!!! Until then...I hope everyone's numbers stay normal and those that are having low days...stay positive!!!
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Old 05-29-2011, 04:25 PM   #1364
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Hi Everybody, did you miss me?? Well here is a little disney report - it was hot. Loved the Grand Floridian, one word for that place - money, loved the beach club and didnt like the Yacht Club - that place has really gone downhill. Saw the star wars parade. That was fun. Tried for the first time - citricos for our anniv. - fantastic, hollywood brown derby - good, flying fish and captains grill - both terrible,.

Now back to the real world - I did feel dizzy sometimes during my trip although not bad. My joints are aching. I know the endo wants me to have that reclast infusion but I am holding off until dh and I talk to her about all the terrible side effercts I have read about.

My thyrogen starts June 16th I think.

dischick - when I had the first diet, I had to go to our churchs 40th anniv. dinner. It was at a restraunt with a catered buffet. At least they sat me far away from the food. I made sure I ate befoe I went and just bought some gingerale (My onc. says no to the water too) and I think I brought some fruit and nuts. It was hard but I got through it.

I have seen the thy ca cookbook has some banana bread and muffin recipes using home made applesauce. It sounds good!! Of course I love both of those. Are you allowed to have chocolate/cocoa etc. M onc. said no, but if you can, try Christines wacky cake recipe!

Last year I pigged out a disney after the diet and scan! So you can have lots of fun doing yours before! At least its the summer and you get lots of choices.

I think my best advice is to mix it up so you dont have diet "groundhog day" as the one girl wrote. Just alternate foods and color,teture etc. Like 100 flavors of chicken breast, , with honey,orange marmalade, with tomatos and peppers etc.

At least this year I can actually have jello and canned chicken soup, that was all I wanted last year when I had the shots and of course they were not allowed, but I was ready with the no salt home made chicken soup etc.

Hope everyone is doing well.
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Old 05-29-2011, 05:52 PM   #1365
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Feeling good and nephew is doing well-- just waiting to see if the Thyrogen is in stock for August.

Luvmarypoppins, I am glad you had such a great (if hot) trip. I know it will be years before we go again, so it's nice to live vicariously a little!
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