The THYROID Thread

[luvmarypoppins]

O.K. I am done with doctors for the week.

Yest. went to the gp. The guy who couldnt even figure out I had cancer even when I was in the hosp. for almost a week etc. . Asked him why I had to wait 5 WEEKS for my blood test results - his usual answer -ummm. (These are the tests the endo told me to ask him to do etc). Well ...they showed my potassium is way too high out of range. Asked him why. He didnt know. He wants it repeated. Will do this by Friday. He said my B12 was way too low and gave me a shot. Umm. I could have gotten a shot last month if they would have callled me. I waited 1 hr. 15 min. in the waiting room no less. My dh took a nap till they callled him. So I got a flu shot, B12 and then I asked him to give me a copy of the blood tests so I could take them to the endo. I got the refill I wanted of my other med, so I think I am gonna go to a different dr. that I took one of my ds too. He is associated with the univ. so he can be in touch with all the specialists etc.

Oh and he did comment on my belly button...hmm. another surgeon visit next month. same old, same old

And today I went to the ey dr. because the endo thought the radiation might have affected the eye etc. My eye dr. said it was not from radiation but I just needed antibiotic drops to clear them up. My eyelashes are too long. Go figure. She told me she has ovarian cancer and even showed me her port. I told her to fight strong!!

I feel like my body is a bunch of chemicals out of wack lately

 

[mrsklamc]

Posted here the other day but I guess it didn't take.

Luvmarypoppins, I'm sorry you are having such a tough time. It must feel like you are ALWAYS at the doctor.

Saw my endo, TSH was .04 and I've been having some heat intolerance so she's lowering my dose a bit- FYI she said 10-15 pounds in weight fluctuation was when they normally see changes.

I thought she had said we'd do a chest xray in 6 months but she ordered one for today. When I came home today my copy of the results was in the mail. Under 'notes' it said 'cells in serum' and that has me a bit freaked out, and of course per usual it's Friday after 5 and there's no one to call. I thought they'd have to do a thyroglobulin test to tell if there were thyroid cells. Maybe it means something else completely but googling doesn't seem to show anything. Oh well. Guess I'll wait and see.

 

[luvmarypoppins]

Micayla - sorry you have to wait for the results. I am sure it must be frustrating. Did your endo say why she wanted to do another chest x ray today?

That is interesting that your endo lowered your synthroid dose. Mine said no way was she doing that and it will be 2 year in jan. I only had 1 initial adjustment.

Hoping you get the answers you need soon and that you will get a good report!! Think positive.

I had my blood test today, so we will see. This time it was the large needle, so there wil not be a false reading. (I also am having them send a copy to the endo)

I am seeing I have a little more energy in the morning since the B12 shot so that is good for sure.

 

[mrsklamc]

Micayla - sorry you have to wait for the results. I am sure it must be frustrating. Did your endo say why she wanted to do another chest x ray today?

That is interesting that your endo lowered your synthroid dose. Mine said no way was she doing that and it will be 2 year in jan. I only had 1 initial adjustment.

Hoping you get the answers you need soon and that you will get a good report!! Think positive.

I had my blood test today, so we will see. This time it was the large needle, so there wil not be a false reading. (I also am having them send a copy to the endo)

I am seeing I have a little more energy in the morning since the B12 shot so that is good for sure.

I'm glad you are having results from the shot.

When I did my testing one radiologist thought he saw something on the scan in my lungs, another didn't so they did a pet scan, still said nothing but do an x ray to be sure. I thought she had said in 6 months, but they did it today and I'm wondering if the 'cells in serum' notation bumped it up or I just misunderstood.

 

[Dvynangel]

I joined the Dis Boards last year and haven't revisited since last December. My husband (DaParkers) is the ultimate Disney expert and Dis Board fan in our house. I listen to tsome of the pod casts with him and I know a whole lot about Disney from him. I say all of this because as much as I love Disney, I never felt more compelled to respond to thread than now. During my one and only pregnancy in 1999, I went from 128 lbs to 205 lbs. And even though I was in the Army and ran and worked out regularly, I could only get down to 148 lbs....and that was working out twice a day and eating next to nothing. After years of being told that I was just "fat" and it was my fault, I was finally diagnosed with hypothyroidism in 2003. It was a relief to know that my "fatness" was not because I was lazy or greedy or unmotivated. It was also a relief to know that there was therapy and medication to help with my other sympoms. It was and still is frustrating that although medication helps, it doesn't cure me. I'm tired of working hard to stave off obesity, of having brittle hair and nails, of suffering from depression, and from having problem skin (among other such appealing symptoms). So since I can't defend myself from the judgmental stares and comments of strangers and my loving family (who never forget to remind me of how "big Dianna is"), I do take solace in the fact that although I know that others are like me, I can read and share with you wonderful faceless thyroid family members and know that I belong to such a great family. Thank you all for sharing and caring and I will try my best to do the same. Just give me a moment because I'm reading all threads starting from back in 2006, because I don't want to miss a thing.

 

[Christine]

I'm glad you are having results from the shot.

When I did my testing one radiologist thought he saw something on the scan in my lungs, another didn't so they did a pet scan, still said nothing but do an x ray to be sure. I thought she had said in 6 months, but they did it today and I'm wondering if the 'cells in serum' notation bumped it up or I just misunderstood.

Micayla,

Did I miss something? What test did you have that involved "serum"?

 

[dischick4778]

I joined the Dis Boards last year and haven't revisited since last December. My husband (DaParkers) is the ultimate Disney expert and Dis Board fan in our house. I listen to tsome of the pod casts with him and I know a whole lot about Disney from him. I say all of this because as much as I love Disney, I never felt more compelled to respond to thread than now. During my one and only pregnancy in 1999, I went from 128 lbs to 205 lbs. And even though I was in the Army and ran and worked out regularly, I could only get down to 148 lbs....and that was working out twice a day and eating next to nothing. After years of being told that I was just "fat" and it was my fault, I was finally diagnosed with hypothyroidism in 2003. It was a relief to know that my "fatness" was not because I was lazy or greedy or unmotivated. It was also a relief to know that there was therapy and medication to help with my other sympoms. It was and still is frustrating that although medication helps, it doesn't cure me. I'm tired of working hard to stave off obesity, of having brittle hair and nails, of suffering from depression, and from having problem skin (among other such appealing symptoms). So since I can't defend myself from the judgmental stares and comments of strangers and my loving family (who never forget to remind me of how "big Dianna is"), I do take solace in the fact that although I know that others are like me, I can read and share with you wonderful faceless thyroid family members and know that I belong to such a great family. Thank you all for sharing and caring and I will try my best to do the same. Just give me a moment because I'm reading all threads starting from back in 2006, because I don't want to miss a thing.

Welcome and thanks for sharing.

 

[luvmarypoppins]

Welcome dvynangel

dischick - just wanted to share this with you. Today at church I went up to a lady I knew and wished her a happy thanksgiving. She says "Oh, whats the matter with you, do you have a cold? I told her, no, its the cancer!!: I guess if she would have sent me a card, remembered all I went through last year etc. she might not have asked that question. Oh well, see it will be 2 years in Jan. and I am still getting the stuff about my voice. Ugh!!

I am taking the 1500 b12 daily but I am still tired. The date I will need the B12 shot will be when we are in disney, so I am thinking that I will just go and get it a little earlier before the trip. I know befoe I was getting them every week before my cancer surgery for about a month. I need some strength or dh will be pushing me in the wheelchair alot. And as usual I havent heard about my latest potassium blood test. We shall see.

Two weeks from today I will be with dh at Disney

Have a blessed thanksgiving everyone. We sure have alot to be thankful for. Count your blessings!!

 

[dischick4778]

Had my second follow up with surgeon and endo last week. Surgeon says my voice has improved and he is not recommending any further procedures right now, which is fine with me! He says my scar could look better and gave me these silicone strips to wear. I don't think it's that bad but I guess he's a bit of a perfectionist.

Endo tested my blood and after getting the results is increasing my synthroid from 188 to 225. She is also increasing calcitriol from .25 to .50. I guess all my levels are still quite low. She has me coming back in a month to check again. Hopefully we get this right soon, I am so tired. I'm tired of being tired! I have a 10 month old baby to care for, a husband, and a ft job. This thyroid thing is a real inconvenience. LOL.

Hope you all had a wonderful Thanksgiving. This year I am thankful for each and every day with my family. Thanks for sharing luvmarypoppins, I guess the cold question is something I will have to live with. At least I know I'm not alone.

 

[luvmarypoppins]

dischick - I think that is s big increase in the synthroid. Mine is 200 and I either freak out, cry alot at times, it makes you totally hyper and you might actually feel your heart racing. Mine has been 200 for almost 2 years with no decrease from the endo in sight. She says she likes all her thyroid cancer patients high.

Its good you are going back in a couple week for a recheck. Maybe you might ask her about b12 blood testing since that can make you tired too.

I hope your next blood tests are good.

I still havent tracked down the reclast that I need for the infusion, my eyes are getting better so that is good PTL and a week from tomm. I will be in Disney with dh2 days at the Poly and 5 days at the Yacht Club

 

[dischick4778]

dischick - I think that is s big increase in the synthroid. Mine is 200 and I either freak out, cry alot at times, it makes you totally hyper and you might actually feel your heart racing. Mine has been 200 for almost 2 years with no decrease from the endo in sight. She says she likes all her thyroid cancer patients high.

Its good you are going back in a couple week for a recheck. Maybe you might ask her about b12 blood testing since that can make you tired too.

I hope your next blood tests are good.

I still havent tracked down the reclast that I need for the infusion, my eyes are getting better so that is good PTL and a week from tomm. I will be in Disney with dh2 days at the Poly and 5 days at the Yacht Club

I am not looking forward to more emotional turmoil. My husband actually told me the other day that I'm an emotional mess and he wanted me to ask my Dr. if this is part of thyroid issues. I am normally a pretty calm and quiet person but apparently I have changed. I don't even realize it half the time. It is so hard. My endo also said she likes her thyroid cancer patients on high doses.

I hope you enjoy your trip. We just booked AKV for June and it cannot come soon enough. Missing this past summer due to the cancer was a huge let down for me and I am determined to make this next trip wonderful! Poly and Yacht Club sounds amazing! Enjoy every minute!!

 

[portocall]

Two weeks ago I went to the doctor thinking I had caught the sickness that was going around when he asked if I was aware I had a thyroid nodule. Um no. So I had the ultrasound and bloodwork done. The ultrasound showed I have a cyst, not that tiny (and it hurts... tshirts and turtlenecks sound like torture to me) which i am grateful for. The bloodwork showed I have hypothyroidism. I just started taking the levotyroxine. Hashimoto's runs in the family so I should'nt be surprised, yet I am. Any advice for a newbie to this world?

 

[Christine]

Two weeks ago I went to the doctor thinking I had caught the sickness that was going around when he asked if I was aware I had a thyroid nodule. Um no. So I had the ultrasound and bloodwork done. The ultrasound showed I have a cyst, not that tiny (and it hurts... tshirts and turtlenecks sound like torture to me) which i am grateful for. The bloodwork showed I have hypothyroidism. I just started taking the levotyroxine. Hashimoto's runs in the family so I should'nt be surprised, yet I am. Any advice for a newbie to this world?

Be very regular with getting your bloodwork done. Have it checked every 6-8 weeks for the first few months. Pay a LOT of attention to how you feel. If you are crabby, can't sleep, and everyone is getting on your nerves, you may be overmedicated.

Watch the cyst. Even though you are hypo, no cyst should totally be ignored. When things get better, push for a biopsy if the cyst does not disappear. Thyroid cancer is getting more and more common and is hugely treatable in the early stages. Don't think they every cyst is harmless.

Take your meds at the same time every day, on an empty stomach. No dairy, no soy, and no supplements with it.

 

[dischick4778]

Two weeks ago I went to the doctor thinking I had caught the sickness that was going around when he asked if I was aware I had a thyroid nodule. Um no. So I had the ultrasound and bloodwork done. The ultrasound showed I have a cyst, not that tiny (and it hurts... tshirts and turtlenecks sound like torture to me) which i am grateful for. The bloodwork showed I have hypothyroidism. I just started taking the levotyroxine. Hashimoto's runs in the family so I should'nt be surprised, yet I am. Any advice for a newbie to this world?

Isn't it amazing! I went to the Dr for a sore throat and ended up with thyroid cancer. The most important thing is to pay attention to it. You want to make sure you stay on top of it. Take your meds, go to your appointments, and call the Dr with any concerns. Don't feel like a pest, this is your health. That was something I had to get used to. I was always someone who rarely called the Dr and tried to handle ailments on my own, but that is not an option anymore. Remain positive. As long as you do what you need to and what the Dr tells you to do you will be good.

 

[mrsklamc]

Can anyone share their experience with thyrogen? First one in January, just wondering what it's like and how long I will be out of commission.

 

[luvmarypoppins]

Can anyone share their experience with thyrogen? First one in January, just wondering what it's like and how long I will be out of commission.

Well of course we are all different. Do you really want to know my experience??

Also will this be done in conjunction with the low iodine diet again, or will you just be getting the 2 shots and then the blood tests?

This year (2011) I am getting just the 2 shots and blood test, no diet and scan, yippee

Mine were both in conjunction with the diet.
Experience 1: (also the shots will have to be given at the same time I think and the blood draw precisely within the hour of the 5th day they told me.
So Mon. shot
Tues shot
Friday - Blood test

First year, lst shot: O.K. Slight headache/fuzziness

First year - 2nd shot -ok for several hours but by dinner I was feeling so sick and nauseous, but of course you cant have any jello, soup, etc. with the diet. I just had some gingerale. Dont even know if I ate anything. The headache was really bad. I just sat still alot and try to distract my self on the internet (didnt work).


2nd year - This time I was prepared for the side effects. I asked the rad. onc if it was alright to take zofran since I was getting the scan in addition to the blood tests. She said yes. So she prescribed me 2 zofran.

I didnt have any problems at all and didnt need the pills with both days and both shots.

So now in May 2011 I am having the 2 shots again. Will see if there is any reaction.

Wishing you all the best. Have a great holiday. I am leaving for Disney in 2 days

 

[luvmarypoppins]

dischick - Did your rad onc. or whoever decided your rai dose, say why you were getting that specific dose? Just wondering?

Because from what I have read and seeing what Micayla has been through, I guess I am just curious to see what other drs. opinions on the dose when there is already lymph node mets and also the rare agressive variants.

Hence, just wondering why you got 150?

 

[Christine]

Can anyone share their experience with thyrogen? First one in January, just wondering what it's like and how long I will be out of commission.

1st time:

First shot: By the evening a headache and slight nausea.
Second shot: Headache gets worse as well as nausea but I don't feel like I'm going to throw up or anything. Also very tired. It can best be described as a mild flu.
By the next day, my symptoms were still there but easing off. By the Friday (scan day), I felt absolutely fine/normal.

2nd time:
Basically a repeat of the first although I think my symptoms were slightly less.

3rd time:

Same as second time BUT, during the evening of my second shot (in the middle of the night), I woke up on FIRE. So, so hot it was unbelievable. I got up to get a cold glass of water and then noticed that my heart rate was incredibly high. I stayed hot and my heart rate stayed up and was about at 150bpms. I fortunately had a beta blocker med at the house for some old heart palps I used to get and I took a big dose of that and my heart rate went down after 3 hours.

I reported the incident to Genzyme and will, most likely, never use Thyrogen again. I'm too old to have that happen again!

 

[mrsklamc]

I didn't realize there were multiple shots. How far apart are they?

 

[Christine]

I didn't realize there were multiple shots. How far apart are they?

You will have one on Monday and on Tuesday. They are to be 24 hours apart. Mine were always done between 9:30 and 10:00 a.m.

Then on the Wednesday, you have to go have your blood drawn at around 24 hours after the second shot. They will also give you your scan dose of RAI.

On Friday, you go and have your scan.