The THYROID Thread

[dischick4778]

I just thank God for each day and the good reports so far. I will take what I get for sure. I dont want to ever seem ungrateful. I guess its always in the back of your mind. It never goes away. Just gets buried a little deeper for a while etc. Anyone else feel or think like this?

Glad to hear your good news! It's only been a year for me, but I feel very similarly. Even though my scan was clear I still didn't believe it. I kept thinking there must be something hiding, something so small they didn't see it. It's not easy to believe but I suppose on times goes on and you continue to get good reports it gets easier.

 

[luvmarypoppins]

I admit I'm kind of surprised by this. As low risk as I am and as far out from my initial diagnosis, my endo would like me to be more supressed (I am at 0.3). My old endo "allowed" it also because I was low risk and I needed quality of life. I don't think they would have been happy at all with 2 or 3. I think a level of 2 or 3 might be fine once you are WAY out from diagnosis. For instance, by the time I'm in my late-60s, say, it will probably be good for me to have my TSH rise a bit--less stress on the heart and bones.

OK after reading what you wrote now I am kind of scared/upset that she would do that. She knows how agressive mine is. She even commented at the visit "You had a LOT of neck involvement" My endo looks pretty young. I would have to see her years of experience. I dont think she meant 0.2 or 0.3 because I am 0.2 already. She knows how bad my bones are right now and maybe since I am older she is doing this and she knows my familys heart history (everyone died from heart related stuff, my dad,mom and sister really early in life so maybe she is factoring that in??). Well I know she will call me in 2 months to go over the blood tests with the lower synthroid dose...

so WHAT do you suggest I say/ask her.?? I want to word it correctly!!

Her "reasoning" in doing this she said was all negative scans and blood tests, no recurrence,bad bone scan and she had referred me to the cardiologist before. (havent gone yet) She said I need to have less anxiety and more energy etc. I didnt even complain about this stuff to her. I only said my bones/joints hurt etc.

She said "we are going to do this very slowly".

So is going from 200 to 175 very slowly?

 

[mrsklamc]

LMP- I definitely feel like it never goes away and just gets buried. I hate it.

I did get called by the specialty pharmacy that ships the thyrogen today and it's on the way- scheduled for delivery the 27th. Copay went from $60 to $150 but it could be worse I guess.

 

[luvmarypoppins]

Micayla - I am so happy you are getting the thyrogen. It will make life easier on the diet for sure. So sorry you have to pay that co pay. The things we have to do to be healthy right?

I saw they have some new recipes n the thy ca cookbook. I think its its banana bread and some kind of muffins made with homemade applesauce. That sounds good for sure!!

I personally think doing the lid in the winter would be the worst. You could eat salad but its so cold out so you would have to make batches of home made soup and the fruit would revolve around oranges and clementines and apples and bananas.

Summer is def. the best!! And if you know you are doing it then you can freeze fresh veg and fruits ahead of time etc.

My synthroid went from a pink pill to lilac as they call it on the bottle.

Well my next 2 appts. are a mamo and that eye specialist. She deals with thyroid eye diseases, so if something is wrong she should know. I plan to hopefully get these done in August. I have to see when dh is going to China again. Then in sept. the next blood tests and maybe the cardiologist and the reclast infusion. My head spins with all these drs. tests etc.

 

[mrsklamc]

DH is watching Master Chef. I want to see an episode where they have to cook for thyca patients!

 

[Christine]

so WHAT do you suggest I say/ask her.?? I want to word it correctly!!

Her "reasoning" in doing this she said was all negative scans and blood tests, no recurrence,bad bone scan and she had referred me to the cardiologist before. (havent gone yet) She said I need to have less anxiety and more energy etc. I didnt even complain about this stuff to her. I only said my bones/joints hurt etc.

She said "we are going to do this very slowly".

So is going from 200 to 175 very slowly?

Well, I can sort of see why she's doing what she's doing. You are at risk for complicating factors (bone loss and cardiac issues). She has to balance those risks against the risk of a bit higher TSH stimulating thyroid cancer growth.

Based on all her scans and lab work, she is not seeing any evidence of thyroid cancer in your body. So, in her mind there is nothing to suppress and she's looking at that against some very real risks of heart and bone trouble. I think that bringing your TSH up a bit and then closely monitoring you with Tg tests is a good compromise. What you could do is see if you could keep your TSH at 0.9 or 1.0. I feel LOADS better with a TSH of 1.0 but I try to go down a bit.

So, what you could say to her is:

"Doctor, I realize I show no evidence of thyroid cancer and you want to allow my TSH to rise; however, I am still very concerned that I may have stray cells lurking that are causing elevations in the Tg nor are showing up on scans. I am worried that NOT suppressing my TSH could cause them to become active and get me in trouble. What do you think about this?"

 

[mrsklamc]

I have never done the thyrogen and the diet at the same time; does anyone remember how long you are on the diet before you get the shots and when your scan is after that? I think the shots are on Mon. and Weds. but I don't remember after that. Maybe the blood is on Friday?

 

[mrsklamc]

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.

oh here it is...from the last time I asked

 

[luvmarypoppins]

DH is watching Master Chef. I want to see an episode where they have to cook for thyca patients!

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

 

[luvmarypoppins]

So, what you could say to her is:

"Doctor, I realize I show no evidence of thyroid cancer and you want to allow my TSH to rise; however, I am still very concerned that I may have stray cells lurking that are causing elevations in the Tg nor are showing up on scans. I am worried that NOT suppressing my TSH could cause them to become active and get me in trouble. What do you think about this?"

Yes, this sounds good. Now I have another question, after the 2 months she only has ordered a T3 and T4 and no thyroglobulin, is this right?

 

[mrsklamc]

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

 

[luvmarypoppins]

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

I dieted during it. I think it was a total of 15 days but she let me have 1 day off so it was 14 days.

Did you have the thyrogen last time? I cant remember?

The lst time I got bad headaches and felt nauseous.

2nd time I just felt a little nauseous and a slight headache.

The 3rd time, this time, I really didnt have too many symptoms, just a slight headache and the muscle pain from the shot in one arm.

 

[mrsklamc]

I dieted during it. I think it was a total of 15 days but she let me have 1 day off so it was 14 days.

Did you have the thyrogen last time? I cant remember?

The lst time I got bad headaches and felt nauseous.

2nd time I just felt a little nauseous and a slight headache.

The 3rd time, this time, I really didnt have too many symptoms, just a slight headache and the muscle pain from the shot in one arm.

I did have thyrogen but it was just a blood test, no scan, so no diet.

I don't remember exactly other than I know I was really tired. I went home and slept, so this time I plan to just go home and sleep.

 

[Christine]

I have never done the thyrogen and the diet at the same time; does anyone remember how long you are on the diet before you get the shots and when your scan is after that? I think the shots are on Mon. and Weds. but I don't remember after that. Maybe the blood is on Friday?

Shots on Monday/Tuesday, bloodwork/tracer dose on Wednesday, scan on Friday.

LID should be done 2 weeks prior to ingesting the tracer dose on Wednesday.

 

[Christine]

Yes, this sounds good. Now I have another question, after the 2 months she only has ordered a T3 and T4 and no thyroglobulin, is this right?

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.

 

[dischick4778]

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.

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]

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]

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]

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.