The THYROID Thread

[dischick4778]

Originally Posted by luvmarypoppins

Yes, we will get Jen's wedding chef in on this too! After all, he already has some experience!!

Ooh that would be great! The other day an organization called my house looking for donations. They claimed to provide services to cancer patients who can't afford supplemental necessities like ensure and other food related items. Of course I went right into questioning with the guy. I told him all about the LID and would this organization cover the cost of a nutritionist for the two weeks. I said I would give a donation if Thyroid cancer was included. He's looking into it. Lol, it's amazing how sensitive we become to these things.

Originally Posted by mrsklamc

Did you guys diet for two weeks prior to your thyrogen.

I did the diet for two weeks prior to the Monday blood test/ shots then continued the diet for the week of shots/scan. So for me it ended up being close to 3 weeks and a loss of 15lbs.

Off topic - according to my endo she wants me to have a scan each year for the next 2-3 years. What if I want to have another child somewhere in that 2-3 year time frame? We are not ready now, but perhaps by next summer. Would I start trying right after next year's scan? What if it takes time to happen? Do I stop if we are getting too close to scan time? I know it's my health and I'm happy to have the scan just not sure how to time this.

[luvmarypoppins]

Originally Posted by Christine

In my experience Tg is generally only ever done at 6 month intervals. It is not a level that makes rapid changes like TSH can.

I typed while the labs were in the other room.

O.K. I looked it up, she has ordered a tsh and T3, is that ok? (For the 2 month test to check the synthroid etc.)

She also gave me a copy of the labs I just had. I did notice my red blood cell count is too high out of range? Hmm, what is up with that? I may need to google. She didnt mention that one.

And she didnt even to write my name on the sono script and then she only did 3 refills instead of 6 for my meds. What is up with this girl? aka my endo. I feel like she is getting so rushy rushy with the paperwork etc. I dont want her to overlook anything like the lab she forgot last time. etc.

[luvmarypoppins]

[QUOTE=dischick

Off topic - according to my endo she wants me to have a scan each year for the next 2-3 years. What if I want to have another child somewhere in that 2-3 year time frame? We are not ready now, but perhaps by next summer. Would I start trying right after next year's scan? What if it takes time to happen? Do I stop if we are getting too close to scan time? I know it's my health and I'm happy to have the scan just not sure how to time this.[/QUOTE]

My rad. onc. said she believes in 2 clean scans so that would be 2 years and then after that just the thyrogen stimulated blood test. Because she said (and Christine said this is true too). There is no more information in a scan than would be in the blood test. And she knows mine is agressive like yours too. So she is saying the blood test is just as good as the scan etc.

I am not saying your endo or rad. onc. feels this way etc. But I guess it wouldnt hurt to ask them how they feel and what your future plans are etc.

[mrsklamc]

Dischick- I can only tell you what they have told me;

Once my scan is clean, we have to wait 2 months for the nuclear material to clear my body. Then we'll start TTC again. She said we would scan again as soon as we were done breast feeding because pregnancy hormones cause growth and they would have that affect on thyroid cancer cells, too. Basically, they work in the testing around pregnancy. I would just give your endo a head's up so they can plan accordingly.

[Christine]

Originally Posted by luvmarypoppins

O.K. I looked it up, she has ordered a tsh and T3, is that ok? (For the 2 month test to check the synthroid etc.)

Sounds good. My doc never orders T3 but I think it's a valuable test so you can see if you are converting T4 to T3 well. Some people don't.

My doctor always seems to order a TSH and a Free T4. Not sure why.

[mrsklamc]

I commented about the LID on Masterchef's facebook page, if anyone wants to go 'like' it...Probably won't work but you never know.

[luvmarypoppins]

Originally Posted by mrsklamc

I commented about the LID on Masterchef's facebook page, if anyone wants to go 'like' it...Probably won't work but you never know.

That sounds cool. I am not on facebook maybe I should be?? My ds have told me not to as a certain group of girls from my church are cliquey and dont invite me to any of their "gatherings". So the ds said, mom just stay off facebook because what you see will probably upset you etc. I also do have a problem with everyone else knowing my personal business etc. so it might not be good for me etc.

Did anyone see the little blub on the Insider last night about Sophia Braga (sp?) from Modern Family fighting the "deadly" disease. It said, Sophia stated they cut my neck and now I am in remission.. Wow what a great bunch of info that was. Well Micayla, as you said before, any press is good. etc. They did say there will be an article in this weeks Parade magazine, so heads up. I will read it if its in my paper.

Oh and Micayla you are one of the lucky ones getting the thyrogen because I saw again on the thy ca website someone else was told no thyrogen for her, just cytomel because of the shortage etc. They couldnt get it for some lady etc.

[mrsklamc]

Originally Posted by luvmarypoppins

That sounds cool. I am not on facebook maybe I should be?? My ds have told me not to as a certain group of girls from my church are cliquey and dont invite me to any of their "gatherings". So the ds said, mom just stay off facebook because what you see will probably upset you etc. I also do have a problem with everyone else knowing my personal business etc. so it might not be good for me etc.

Did anyone see the little blub on the Insider last night about Sophia Braga (sp?) from Modern Family fighting the "deadly" disease. It said, Sophia stated they cut my neck and now I am in remission.. Wow what a great bunch of info that was. Well Micayla, as you said before, any press is good. etc. They did say there will be an article in this weeks Parade magazine, so heads up. I will read it if its in my paper.

Oh and Micayla you are one of the lucky ones getting the thyrogen because I saw again on the thy ca website someone else was told no thyrogen for her, just cytomel because of the shortage etc. They couldnt get it for some lady etc.

LMP-
Thanks for the info on the thyrogen.

Facebook has it's pros and cons- I resisted for a long time too. It's nice for keeping in touch with extended family though. Is it possible the ladies just don't think to tell you and you don't know because you aren't on facebook?

[mrsklamc]

They deleted my post! Oh well- looks like they don't leave any comments but their own on their page.

[luvmarypoppins]

So for those who have had their synthroid reduced, I am thinking of you Micayla, and anyone else.

Did you notice things like:
Having More Energy
Less Forgetfulness
Feeling more hot than the usual feeling more cold?
Less Bone pain?

I know its strange, but its only been a couple days. The only thing that is still bad is the sleeping, but I think that is just due to my normal neck dissection pain/scar tissue stuff.

Could this stuff happen so fast? Or am I imagining things??

[mrsklamc]

I just talked it over with DH. I think it's pretty different for everyone but I think the big difference when I went from hyper to less hyper is less crankiness & better sleep. I personally was not cold- have always had less tolerance for heat since this whole thing started-- other than my feet which are almost always cold.

I almost think I'm a little hypo now. We're going to do a TSH whenever we start my testing. I was hoping she'd get back to me with dates this week since they called about the thyrogen but no such luck.\

ETA: I have never had bone pain. My calcium levels have always been good but I try to eat extra dairy because there's a correlation between synthroid use and osteoporosis.

[mrsklamc]

On another note, I think I'm going to start a co q 10 supplement. It's pretty expensive but supposedly good for gums, which I've had some trouble with since the 2nd radiation dose. Thought I'd throw that out there and see if anyone else has tried it, or wants to.

[Christine]

Originally Posted by luvmarypoppins

So for those who have had their synthroid reduced, I am thinking of you Micayla, and anyone else.

Did you notice things like:
Having More Energy
Less Forgetfulness
Feeling more hot than the usual feeling more cold?
Less Bone pain?

I know its strange, but its only been a couple days. The only thing that is still bad is the sleeping, but I think that is just due to my normal neck dissection pain/scar tissue stuff.

Could this stuff happen so fast? Or am I imagining things??

No, it can happen quickly. Although I would think you should feel less hot. I don't have bone pain so that I can't comment on.

I would mainly feel less irritable. I would imagine your energy would increase because you're not so ramped up; however, I've never had much energy all my life so I wouldn't know!

[dischick4778]

I've only been on the lower dosage for around a week. Haven't noticed anything different yet. I keep waiting to feel less anxious and less stressed but it hasn't happened yet. I'm still getting leg and foot cramps but I have a major calcium issue as you know. I never noticed feeling overly tired, but I chase after an 18 month old so I figure being tired is part of life. Hoping to see some positive changes soon. Glad to hear you are noticing some differences!

[luvmarypoppins]

Originally Posted by dischick4778

I've only been on the lower dosage for around a week. Haven't noticed anything different yet. I keep waiting to feel less anxious and less stressed but it hasn't happened yet. I'm still getting leg and foot cramps but I have a major calcium issue as you know. I never noticed feeling overly tired, but I chase after an 18 month old so I figure being tired is part of life. Hoping to see some positive changes soon. Glad to hear you are noticing some differences!

What was your reduced to? Mine was 200 and now they are trying 175. Also did your endo tell you what tsh she wants you at? Asking as Christine also says she cant believe that mine said a 2 or 3 is ok. Maybe mine means a 0.2 or 0.3? I am not throwing out the rest of my 200 yet, just in case.