The THYROID Thread

[1Grumpy9]

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!!!

 

[dischick4778]

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!

 

[1Grumpy9]

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!!!

 

[luvmarypoppins]

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.

 

[mrsklamc]

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!

 

[Christine]

Citricos is my overall favorite restaurant in Disney. LOVE it.

 

[dischick4778]

luvmarypoppins - glad you had a great trip! We are leaving next Tuesday and I can't wait! We are staying at AKV but having dinner one night in the Grand Floridian, I'm excited to see it. Thanks for the food advice. I think I'm making it worse than it will really be. I'm just enjoying eating normally and not looking forward to being on the diet at all and most especially on my friend's wedding day. But it's a small sacrifice for my health.

1Grumpy9 - I didn't even realize there was a calcium shot. I take the calcitriol plus 1500 calcium every day. The calcium is annoying since it cannot be taken with other meds and I tend to forget it, but I'm making an effort to be better with it.

 

[1Grumpy9]

From what my endo told me the calcium shot is mainly for sever osteoporosis patients and hasn't been approved for more than a 2 year use. She told me that the only way she would give it to me is if it was my last two years of life.

 

[luvmarypoppins]

Well if you all dont have anything better to do with your time, you can go on over to the Breast Cancer Thread on the Community Board on pages 200 and 201 you can see some pictures of me. You will figure out which one is me by the lovely neck dissection. Oh and to you young ones, I am old enough to be your mom.

 

[mrsklamc]

Just got a letter from my health plan that thyrogen is moving up to 'tier 4' which is the lowest level of coverage. They suggest I talk to my doctor about switching to an alternate drug. Isn't that nice of them?

 

[dischick4778]

Just an update on the wedding food situation, I called the catering hall and the chef got on the phone and asked me to send him the thyca cookbook. He said he would make sure he had a meal for me on the diet. There are some wonderful people in this world.

 

[luvmarypoppins]

Just got a letter from my health plan that thyrogen is moving up to 'tier 4' which is the lowest level of coverage. They suggest I talk to my doctor about switching to an alternate drug. Isn't that nice of them?

Wow, that really stinks! So would you go the cytomel route again. I dont know how much each shot is, but I heard one of the onc. nurses tell me once, wow, this stuff is really expensive!

Is it something like $600?

Can your dr. appeal for you? So I am guesssing this change will take place before you're scheduled to get it?

 

[luvmarypoppins]

Just an update on the wedding food situation, I called the catering hall and the chef got on the phone and asked me to send him the thyca cookbook. He said he would make sure he had a meal for me on the diet. There are some wonderful people in this world.

wow, that is really sweet. I think my biggest concern would be any cross contamination with the prep and people handling salt. It sounds like they are really being accomodating to you which is so nice for sure!

I would also verify the final meal with them etc. and ask them about the prep procedures, like a seperate area etc.

I hope you have a great trip!

 

[dischick4778]

wow, that is really sweet. I think my biggest concern would be any cross contamination with the prep and people handling salt. It sounds like they are really being accomodating to you which is so nice for sure!

I would also verify the final meal with them etc. and ask them about the prep procedures, like a seperate area etc.

I hope you have a great trip!

After my initial excitement, I did get a little nervous. But it would be nice not to have to bring my own food to a wedding. We will see, I will be sure to call and confirm and might bring something as a just in case.

I am so excited for our trip and am going to enjoy every meal knowing that when we return I start the diet.

 

[mrsklamc]

Wow, that really stinks! So would you go the cytomel route again. I dont know how much each shot is, but I heard one of the onc. nurses tell me once, wow, this stuff is really expensive!

Is it something like $600?

Can your dr. appeal for you? So I am guesssing this change will take place before you're scheduled to get it?

Last time my doctor mentioned $900 but the insurance ended up covering it for a $60 co pay. The change is scheduled to happen just before I need it so I contacted my dr's assistant and asked if we could order it in advance. (we ordered in Dec. for my Jan. test. She said she can....IF it's available.

Oh well. Que sera, sera!

 

[mrsklamc]

Wow, that really stinks! So would you go the cytomel route again.?

Forgot to answer this part. Depends on how expensive it gets as I'm sure health care costs will continue to climb. Right now, for $600-$900 we'd probably just pay it. I mean, how do they expect me to put a price on essentially two weeks of my life?

 

[luvmarypoppins]

Micayla, are you doing the diet again too? Well if you are paying for the thyrogen, do you think they will give it to you at cost? I would seriously ask about that for sure. I dont know how much they mark the stuff up etc.

I am getting nervous about the testing. I always do this anyway. O.K. I admit it, In 2 days I ate an entire leftover chocolate bunny that ds21 said he did not want from easter.

Also, and christine, what is your opinion on this? In July I have to go for a sono and more blood tests. I know I am now on a 6 month schedule for that with the endo but it seems like its too close to the tests I will have just had. I know my onc. said after this test, she will only look at what the endo orders I think? So I am wondering if a 6 month blood testing and sono schedule seems like "enough" with my agressive variant?

My endo did make the comment, well since yours is agressive, thats why you are on the 6th month schedule, so after 2 years out, normally is everyone on a 1 year schedule etc?

 

[Christine]

Micayla, are you doing the diet again too? Well if you are paying for the thyrogen, do you think they will give it to you at cost? I would seriously ask about that for sure. I dont know how much they mark the stuff up etc.

I am getting nervous about the testing. I always do this anyway. O.K. I admit it, In 2 days I ate an entire leftover chocolate bunny that ds21 said he did not want from easter.

Also, and christine, what is your opinion on this? In July I have to go for a sono and more blood tests. I know I am now on a 6 month schedule for that with the endo but it seems like its too close to the tests I will have just had. I know my onc. said after this test, she will only look at what the endo orders I think? So I am wondering if a 6 month blood testing and sono schedule seems like "enough" with my agressive variant?

My endo did make the comment, well since yours is agressive, thats why you are on the 6th month schedule, so after 2 years out, normally is everyone on a 1 year schedule etc?

I think a 6-month schedule is good. Essentially they are keeping you on the schedule that the newly diagnosed are on. There's probably not much point in doing it more so. I guess you are wondering why it's not more spaced out? Maybe you could work on that. Like having the sono/blood tests exactly 3 months after the other tests, and then the other tests 3 months after that?

 

[mrsklamc]

I may be missing something but I think this would be an interesting diet recipe:
http://ohsheglows.com/2011/01/31/15-minute-creamy-avocado-pasta/

 

[luvmarypoppins]

Micayla - I think dischick is going to love this recipe since she loves avocado and pasta.

Well in 2 more days its thyrogen for me. I always get nervous and then since I actually have to go into the hosp to get it, its even worse because it just reminds me of all my surgical "experiences", coma etc. I am sure my dh will be asking if we can go eat lunch in the cafeteria.

I hope the nausea and headaches arent too bad. I already told dh I am not cooking those 2 days. He is flying in tomm. night from China, sleeping his jet lag off and then taking me thurs. morning.