The THYROID Thread

[luvmarypoppins]

1Grumpy9- Hope the new meds work out for you.

Jenn - I am glad you are feeling better with the med adjustment. I felt so much better too, like I was not so much of a crazy person anymore. Everyone in the family is happy. Just wondering why you have to keep going back to the surgeon? Is it only for the scar issue, or the voice stuff etc? My surgeon said, after a year he basically didnt want to see me anymore but then he passed me off to the other surgeon but that was only for all the voice issues I was having. I am glad your surgeon offered you something about the scar. Would he do it himself, or send you to a plastic surgeon etc?

Micayla - how is the diet going? I think this is the best time of year to do it. I would dread it in winter.

Well in my thy ca website reading I saw:

1 guy who went through what I went through. He said his neck was like a balloon and he was bleeding internally. He called it a "close call".

Another guy said his "MAJOR" hospital only had 6 doses of thyrogen available and he was getting 2?? Wowsa, this shortage seems really bad. I am so blessed that I got it and Jenn too and Micayla you are lucky too. Thankful for my rad. onc. and living in the NY metro area for sure.

And here is my topic of discussion: SCANS

What has your endo, oncologist etc. told you about scans. I see on the website that some people have to have them yearly. I know my rad. onc. said after 2 clean scans she only wants the endo to do the blood testing, but she did also mention about getting a scan every 5 years? Christine, what is your insight? and has anyone else had anything mentioned to them?

 

[Christine]

And here is my topic of discussion: SCANS

What has your endo, oncologist etc. told you about scans. I see on the website that some people have to have them yearly. I know my rad. onc. said after 2 clean scans she only wants the endo to do the blood testing, but she did also mention about getting a scan every 5 years? Christine, what is your insight? and has anyone else had anything mentioned to them?

It used to be that once you got two clean scans, you could skip a year. If that was clean, you went to a 5 year interval for the rest of your life. That changed, at least for me, in 2008 when my endo told me that the move was just to do Thyrogen with Tg testing. No more scanning for people like me.

My knew endo is on board with that. As far as I can tell, I will never have another scan again, just monitor with Tg and ultrasounds. In fact, since I won't take Thyrogen again, I will probably remove myself from my meds for a week or two before having my Tg done (if I can handle it).

 

[1Grumpy9]

You're on the Tirosint, correct?

So are you saying that when you took Synthroid (or whatever brand you were taking) that it wasn't working at all for you? I guess I'm a little confused because you are now lowering your dosage. That *sounds* like the other meds were working before but, oh well, as I said, I'm confused!

I am on Tirosint...I had absorbsion problems with Synthroid. After my surgery and my Parathyroid also being removed, I have to take a bunch of calcium and even though stretched out my times of taking Synthroid, it was not being absorbed into my body and being blocked by the amount of calcium I take. I was on Synthroid from when I was 7. The Synthroid was working, but not very well at all!!! My endo started me on the same amount of mcg's as my Synthroid, and after 8 weeks it took my numbers really high and we have been backing it down ever since.

You can be confused...I understand completly!!!

 

[Christine]

I am on Tirosint...I had absorbsion problems with Synthroid. After my surgery and my Parathyroid also being removed, I have to take a bunch of calcium and even though stretched out my times of taking Synthroid, it was not being absorbed into my body and being blocked by the amount of calcium I take. I was on Synthroid from when I was 7. The Synthroid was working, but not very well at all!!! My endo started me on the same amount of mcg's as my Synthroid, and after 8 weeks it took my numbers really high and we have been backing it down ever since.

You can be confused...I understand completly!!!

Okay, got it!! Thanks!

 

[dbaker375]

Hi there, I'm a newbie to this thread.

I am 42 yr old female with hypothyroidism. I take 100mcg of levothyroxine daily. I was diagnosed approx 7 years ago have been on varying dosages of synthroid or the generic ever since.

I feel like I know my body pretty well and honestly feel that I need to bump up on my meds, but the endo says that my bloodwork looks "perfect" (as of July). UGH!!

I feel like I do when the meds need to be adjusted. I was encouraged to read a previous posters comments about Carpal Tunnel symptoms and weird vision as I have been experiencing them.

I don't know whether to switch doctors or what I should do.

 

[Christine]

Hi there, I'm a newbie to this thread.

I am 42 yr old female with hypothyroidism. I take 100mcg of levothyroxine daily. I was diagnosed approx 7 years ago have been on varying dosages of synthroid or the generic ever since.

I feel like I know my body pretty well and honestly feel that I need to bump up on my meds, but the endo says that my bloodwork looks "perfect" (as of July). UGH!!

I feel like I do when the meds need to be adjusted. I was encouraged to read a previous posters comments about Carpal Tunnel symptoms and weird vision as I have been experiencing them.

I don't know whether to switch doctors or what I should do.

I would probably ask to get a copy of all your labs over the last 2 years. Then compare them? Has there been a change in your TSH? Also, you want to ensure that your doctor is running a full thyroid panel and not just the TSH. The other numbers (T4 and T3) tell a lot.

If you review all that and all is well, you need to look into seeing if something else is causing your change. Or it could be something has change and you might do better on a higher dose of the thyroid meds but it's hard to say not knowing what range you are at right now.

 

[dischick4778]

Jenn - I am glad you are feeling better with the med adjustment. I felt so much better too, like I was not so much of a crazy person anymore. Everyone in the family is happy. Just wondering why you have to keep going back to the surgeon? Is it only for the scar issue, or the voice stuff etc? My surgeon said, after a year he basically didnt want to see me anymore but then he passed me off to the other surgeon but that was only for all the voice issues I was having. I am glad your surgeon offered you something about the scar. Would he do it himself, or send you to a plastic surgeon etc?

And here is my topic of discussion: SCANS

What has your endo, oncologist etc. told you about scans. I see on the website that some people have to have them yearly. I know my rad. onc. said after 2 clean scans she only wants the endo to do the blood testing, but she did also mention about getting a scan every 5 years? Christine, what is your insight? and has anyone else had anything mentioned to them?

Thanks! It has been wonderful feeling less crazy! I think my surgeon is being weird about the whole thing. From the beginning he has been very interested in my case and very involved. I was seeing him every two months at first then every 3 months. I don't know if he was shocked by the amount of cancer and tumors that I had and he was just being cautious but I have been seeing him just as often as my endo. At least now I can cut back on seeing him.

Also, my surgeon is a plastic surgeon as well so he would fix my scar in his office. He said it would be quick and painless. I'm just so done with procedures and medical issues that I cannot even consider it at the moment.

From my understanding I will do scans the first three years but I think that is because of how aggressive the cancer was. Plus I still have a high thyroglobulin ab level so they are not comfortable using that as a true marker just yet. I was told after three years of clean scans we would skip and year and scan at year five. Then if that was clean we would move to every three years. And take it from there.

 

[mrsklamc]

Well it's been about 10 days and the diet is just starting to get frustrating. At least I've lost some weight this time- about 5 lbs. Started wondering when I might be done and looked back through this thread- looks like last time my tg took about 14 days- and that's AFTER they got the right test ordered.

 

[luvmarypoppins]

Micayla - Hang in there! You can do this!! I am sure its getting old and ugly real fast. Right near the end of mine, I think I went into some kind of emotional revolt and decided, no more salad, I just had peanut butter with carrot sticks and celery and then some plain matzo for the crunch effect or some cucumbers.

I also try to mix up textures and colors.

I also had to make myself "feel" special and like I was getting a special treat, so I bought myself a bottle of soda etc. That way I could go out and take it during a car ride etc. (I was not even allowed regular tap water). Also got those little raisin boxed and craisins packets. Sometimes I made a little trail mix baggie for myself with nuts, raisins, craisins, etc.


Maybe try a hot meal for lunch and salad for dinner etc.

I would rotate the meats, beef, pork and chicken with the starches, sweet potatoe, basmati rice, no yolk egg noodles and white potatoes.

You could also use oil on ears of corn and bake them in the oven and add some pepper etc. Stuffed peppers with sliced tomatoes etc.

I think I also did something with green and yellow squash.

Pop some popcorn in the microwave. Make a fresh fruit slushie etc.

Wisihng you all the best. If you make the banana bread or some dessert with the aoplesauce form the lid cookbook, let me know how it turns out.

There is light at the end of the tunnel and you are getting there!!

 

[dischick4778]

Well it's been about 10 days and the diet is just starting to get frustrating. At least I've lost some weight this time- about 5 lbs. Started wondering when I might be done and looked back through this thread- looks like last time my tg took about 14 days- and that's AFTER they got the right test ordered.

It's such a frustrating feeling and a terribly boring diet. But you are 10 days in, that is good news! At the end I was feeling most deprived at night because I like a treat and after eating fruit all day I didn't want more of it, but I found ices that did not have dairy or soy and that helped. What about the egg white with avocado, that was my alternative to salad for lunch.

Just know we understand and feel free to vent about it anytime.

 

[mrsklamc]

First thyrogen shot (of this round anyway) today and no real adverse reaction so far. Just can't stop thinking about cheese and bacon.

 

[luvmarypoppins]

First thyrogen shot (of this round anyway) today and no real adverse reaction so far. Just can't stop thinking about cheese and bacon.

I am glad that things are so far so good for you. It didnt hit me to later in the evening. The slight headache and little queasy feeling. My worst thing on the lst day in June was the injection site, wowsa, lots of pain. I think I took tylenol. I cant remember.

Just be thankful you got the thyrogen. On the thyca website, there are lots of people complaining that they are getting no thyrogen and have to go through hypo hell.

As I said before this has all been caused by the European demand and the switching to the midwest plant my rad. onc. said.

Wishing you all the best.

 

[mrsklamc]

Ok so this time I got 123 instead of 131 & I guess that's safer and no precautions this time? Scan is tomorrow instead of Friday which is what I was originally told....

Also of note, in January I think I remember having to sign a sheet saying that I didn't see anything floating in the thyrogen, and I didn't have to do that this time.

 

[luvmarypoppins]

What is the difference between the 2? I am assuming I got the 131 because I was told of all the precautions last time.

I also did not have to sign any papers in June for the thyrogen.

Wishing you all the best tomm. I bet you will be so happy when all this is behind you. Keep us informed.

 

[Crzygrl]

Hi everyone! I was just diagnosed with hypothyroidism, and just found this thread. My pcp diagnosed me with a tsh level of 8, and started me on 50 mcg levothyroxine. On the second dose I got hives on my lips almost immediately after taking it. The dr thinks I'm nuts, but told me to wait a couple of days and then try Synthroid just in case I was allergic to an inactive ingredient in the Levothyroxine. I have so many questions about this diagnosis (what caused it, will I be hypo forever, etc) that I feel the dr kind of skirted around. I'm wondering if I should make an appointment with and endocrinologist? Any recommendations or info would be greatly appreciated!

 

[mrsklamc]

Hi everyone! I was just diagnosed with hypothyroidism, and just found this thread. My pcp diagnosed me with a tsh level of 8, and started me on 50 mcg levothyroxine. On the second dose I got hives on my lips almost immediately after taking it. The dr thinks I'm nuts, but told me to wait a couple of days and then try Synthroid just in case I was allergic to an inactive ingredient in the Levothyroxine. I have so many questions about this diagnosis (what caused it, will I be hypo forever, etc) that I feel the dr kind of skirted around. I'm wondering if I should make an appointment with and endocrinologist? Any recommendations or info would be greatly appreciated!

I would definitely try to get in to see an endo. There's usually a wait so if your regular doc gets it fixed you can cancel.

 

[mrsklamc]

What is the difference between the 2? I am assuming I got the 131 because I was told of all the precautions last time.

I guess 123 isn't as powerful....I remember Christine talking about the possibility of a tracer dose making treatment doses less effective...I guess they're just catching up around here. 123 for a scan, 131 for a treatment.

 

[luvmarypoppins]

Hi everyone! I was just diagnosed with hypothyroidism, and just found this thread. My pcp diagnosed me with a tsh level of 8, and started me on 50 mcg levothyroxine. On the second dose I got hives on my lips almost immediately after taking it. The dr thinks I'm nuts, but told me to wait a couple of days and then try Synthroid just in case I was allergic to an inactive ingredient in the Levothyroxine. I have so many questions about this diagnosis (what caused it, will I be hypo forever, etc) that I feel the dr kind of skirted around. I'm wondering if I should make an appointment with and endocrinologist? Any recommendations or info would be greatly appreciated!

Welcome, second the going to see an endo. There is no way I would let my gp manage my thyroid stuff. He is totally clueless. Couldnt even figure out I had thyroid cancer.

I also had to wait a while to see the endo post op. But I go to a teaching hospital and I was blessed to be able to pick from 3 endos. Of course I wanted the female, so I had to wait, but my surgeons nurse prac. called and got me in much, much sooner. It would help if your regular drs. office could call and refer your case I think. I always take the name brand synthroid, even though my ins. does not pay for it, they only do generic, but I dont want to be concerned with all the filler issues etc.

 

[dbaker375]

I would probably ask to get a copy of all your labs over the last 2 years. Then compare them? Has there been a change in your TSH? Also, you want to ensure that your doctor is running a full thyroid panel and not just the TSH. The other numbers (T4 and T3) tell a lot.

If you review all that and all is well, you need to look into seeing if something else is causing your change. Or it could be something has change and you might do better on a higher dose of the thyroid meds but it's hard to say not knowing what range you are at right now.

Hi there,
I took your advice and requested copies of the last 2 years lab results and made an appointment to see a new doctor. Surprisingly I was able to get right in. Only the TSH has been tested the last two times.

The new physician took time to chat with me and tested the T3 and T4 and increased my Synthroid from 100mcg to 112mcg. Also told me not to take the generic.

He also ordered an ultrasound of the thyroid using a DX of multinodular goiter, hypothyroidism. He didn't mention anything about "feeling" nodules or anything but said that since I had never had a scan of the thyroid before he wanted to see one. Surprisingly I was able to get an appointment for that right away tomorrow morning.

I return to the doctor in 4 weeks.

Thanks for the support!!

 

[mrsklamc]

So I went to the scan this morning and the tech said "So this will be your first clear scan and they like you to have 3 so we'll see you two more times..." and I am taking it that that means it was clear in her opinion at least.

Looking back at this thread (It makes for a great record!) It looks like my results for thyroglobulin have taken anywhere from 3 days to a couple of weeks. When they draw the blood tomorrow I'm going to ask when they think it will be back cause I am ready for some cheese and bacon!