The THYROID Thread

[Christine]

Went for my sono yesterday. I had my usual girl and surprisingly she was so pleasant and nice this time.

She said that everything looks good after she took my pictures to the radiologist.

So since I didnt need any more views I am assuming all is well. But of course we have to look at the blood test numbers etc.

I am so exhausted teaching bible school. We have 15 kids and my helper is such a super lady. She does everything to help me that I cant do physically. She is a blessing for sure. I am getting to know her more. Amazing how you see someone briefly on a sunday and dont get to know them too much etc.

Endo on Monday.

Sounds like a good visit!!!

Hey, when are you going to be in Disney? I'm toying with the idea of going with my DD at the end of July. She's already going but I'm on the fence. Probably won't go but it'd be fun to meet up for a short time if we are there at the same time.

 

[Granfan]

You've got it!

The second surgery went much better than the first. It is now a year later and she was told she will get radioactive iodine treatment in August. We had asked about it shortly after the surgery and they said it wouldn't so any good then. I know there are many types and variations of cancer so I guess we'll go along even if we don't understand why. I've thought of you all and your emotional support of us even when you're going through trouble yourselves. I really appreciate you all so much even though I don't come to these boards much anymore.

 

[Christine]

The second surgery went much better than the first. It is now a year later and she was told she will get radioactive iodine treatment in August. We had asked about it shortly after the surgery and they said it wouldn't so any good then. I know there are many types and variations of cancer so I guess we'll go along even if we don't understand why. I've thought of you all and your emotional support of us even when you're going through trouble yourselves. I really appreciate you all so much even though I don't come to these boards much anymore.

Can you let me know what part you all are not understanding? Maybe we can all clear it up a little?

 

[mrsklamc]

GranFan- it sounds like maybe you don't understand why she couldn't have radioactive iodine right after surgery? Her body will need to be clear of the thyroid hormone her body was producing before the RAI. Also, they told me that it might cause my incision to rupture if it wasn't fully healed, but I don't really trust the doc who said that, so...

 

[Granfan]

I thought that if any cancer cells were left after surgery it would be better to go ahead and treat them before they could multiply or spread. I didn't know about being clear of thyroid hormones first. Now, she is afraid of side effects of the RAI.

 

[mrsklamc]

Well, it is best to do it shortly after the surgery, but a few weeks will help, not hurt. They want any remaining thyroid tissue to be 'hungry' for the RAI.

Do you know what dose of RAI she will be getting? My first one was not so bad, but the second one was a doozy. The effects are cumulative, so I think I would have been better off all around if they had done my first dose at a higher level, but hindsight is 20/20. It's hard to know, they want it to be the lowest effective dose....Anyway, tell her not to be scared of the RAI, it will be ok. Do you know if she is going to be getting a drug called thyrogen? It allows you to stay on your synthroid while you do RAI, and being off the synthroid was far, far, FAR worse that the RAI was.

 

[SingingMom]

Well, it is best to do it shortly after the surgery, but a few weeks will help, not hurt. They want any remaining thyroid tissue to be 'hungry' for the RAI.

Do you know what dose of RAI she will be getting? My first one was not so bad, but the second one was a doozy. The effects are cumulative, so I think I would have been better off all around if they had done my first dose at a higher level, but hindsight is 20/20. It's hard to know, they want it to be the lowest effective dose....Anyway, tell her not to be scared of the RAI, it will be ok. Do you know if she is going to be getting a drug called thyrogen? It allows you to stay on your synthroid while you do RAI, and being off the synthroid was far, far, FAR worse that the RAI was.

Back in my day of thyroid cancer surgery (20 years ago) they didn't have the thyrogen option and being off the synthroid was worse than the actual surgery. I opted not to have the RAI because scan came back just over 2% and I literally could not put myself through a week of isolation at the state I was in without the synthroid, plus I had questions on the effects it might have on ovaries etc (having not had children yet).
Today things are so different and I probably would have had the RAI treatment with no issues at all.

 

[Christine]

I thought that if any cancer cells were left after surgery it would be better to go ahead and treat them before they could multiply or spread. I didn't know about being clear of thyroid hormones first. Now, she is afraid of side effects of the RAI.

Granfan,

Most people don't have the treatment immediately after surgery. I had my surgery in August and didn't have RAI to right before Thanksgiving. My surgeon wanted me to wait long enough to recover from the surgery, get my bearings, and have my neck heal a bit. I was much younger the first time when I went off my medication for the scan (no Thyrogen back then) and I worked right up until the treatment, went to the hospital on my lunch hour, had the RAI dose (it was a "walking" dose") and drove myself home. I did start to feel kind of bad after that but nothing more than a mild flu. The larger doses (which I had later) did cause me more issues, heck, probably more issues than most. But, tell her not to be too afraid. The "worst" of it is going to feel like she's got a good case of the flu without the fever.

If she's concerned about long-term effects, there is a report increase of other cancers way down the road but that is for successive doses that are large (yep, like I had) and the causation is still sort of "loose" there. I've not personally heard of/met anyone with thyroid cancer that had that happen.

 

[mrsklamc]

I also read once that they aren't sure if cancer patients get more cancers, or if we are just monitored much more closely than average, so our other small tumors tend to get found.

 

[Granfan]

Thanks for all the info. I will pass it along to my daughter. I don't know if thyrogen will be used or not. I hope she will get more information on how they intend to treat before she decides to let them do it or not. She is a second grade teacher so she may have to be out for a few days. Also her last surgery was March 2011 and that seems like a long to wait to me.

 

[luvmarypoppins]

Granfan - wishing your dd all the best. I am one for thyrogen instead of going hypo. I guess you dd will have to ask her care team what method they will be using. I guess if her ins. covers thyrogen and they can get it for her it would cut down on alot of tiredeness, withdrawl etc. Do you live near her that you could help her out?

Update on me: went to the endo today. She said my thyroglobulin is undetectable, my tsh is .63, is that .63 or .063??

Anywho, she said that the tsh was my lowest number yet, so she is really happy and she is keeping my synthroid at 150 and probably will not lower it any more. I told her how tired I was. etc. No comment from her other than that is always a problem for you etc. She did not like that I gained 11 lbs. or maybe 8, I cant remember. I dont know, I think its because I dont exercise because of all my back pain and hip trouble etc. I cant remember what it was at the onc. in May but I cant believe I gained that much weight in such a short time etc. Very strange.

So next month she wants me to get a bone scan to see if the reclast worked. If it did, then I have to have another reclast infusion and if the bone scan is not good then she might try a different med to slow down the osteoporosis etc.

So other than the infusion in Nov. and the bone scan next month, I am good to go until Jan. so far.

 

[mrsklamc]

Has your potassium been checked at all? Mine was low, and it can be caused by high doses of thyroid hormone. Taking a supplement for that has really helped with tiredness, specifically tiredness in my muscles when I move.

 

[Christine]

Update on me: went to the endo today. She said my thyroglobulin is undetectable, my tsh is .63, is that .63 or .063??

Anywho, she said that the tsh was my lowest number yet, so she is really happy and she is keeping my synthroid at 150 and probably will not lower it any more. I told her how tired I was. etc. No comment from her other than that is always a problem for you etc. She did not like that I gained 11 lbs. or maybe 8, I cant remember. I dont know, I think its because I dont exercise because of all my back pain and hip trouble etc. I cant remember what it was at the onc. in May but I cant believe I gained that much weight in such a short time etc. Very strange.

It's .63. You can have a TSH of .063 but it would say that. A .63 is a good number to have. Mine is around .3 to .5 on any given test.

LMP--I can tell you--at age 48, I am to the point that I do feel pretty awful when I don't exercise. I have NEVER been an exerciser or athletic or even interested in doing much in my life. I was always very naturally thin and felt good so I never concerned myself with it. I have felt that starting at around age 43, it is the first time in my life that I have noticed myself going "downhill". Each year it gets worse. I have had to REALLY force myself to exercise. As much as I hate to admit it, it works. Now, it doesn't work right away but after about 4 weeks of gentle walking and building up to it, I notice that I have more spring in my step. Now, of course, everything hurts more, but it's kind of a good hurt.

I also gain weight very easily now. I went back on to sparkpeople.com and started logging everything I ate. I was shocked to see that I was eating around 2500 calories a day. I didn't *think* was eating that much but it's easy to do. So I managed to really tweak my food intake since I was now aware of it and that really help me too. I won't say I *dieted* but I definitely cut down some things.

You have to be really motivated to start both of those things so if you get to the point that you are feeling so poorly, you might want to give that a try.

 

[luvmarypoppins]

Has your potassium been checked at all? Mine was low, and it can be caused by high doses of thyroid hormone. Taking a supplement for that has really helped with tiredness, specifically tiredness in my muscles when I move.

I agree about the potassium stuff. I always have problems with that and leg cramps at times.

She did a basic metabolic panel, so I dont know if that is included in there for testing etc.

 

[luvmarypoppins]

Well the endo knows I really cant exercise due to all my back surgeries and I am sure my hip is barely holding on right now with all the pain I am having.

I think the only thing I could possibly attempt is a treadmill at home. I dont even want to walk in the street for fear of falling etc. I dont even have a good balance anyway.

Oh she also said I have to have another bone scan (dexa) in August. She said hopefully my number will be up and then I will get another reclast infusion in Nov. If the number is not up, then she will have to switch me to some other med or infusion to keep the osteoporosis from getting any worse too.

I really hope the number is up because after the horrible reaction I had to that first infusion I cant even imagine what another med would be like. She did say if I have this reclast infusion again I should not get the horrible reaction like I got before, yeah right. We will see about that for sure.

 

[Christine]

Well the endo knows I really cant exercise due to all my back surgeries and I am sure my hip is barely holding on right now with all the pain I am having.

I think the only thing I could possibly attempt is a treadmill at home. I dont even want to walk in the street for fear of falling etc. I dont even have a good balance anyway.

Yeah, that's a problem. I do most of my exercising in my basement on my treadmill. I am very sensitive to the heat so it works. But I occassionally try to get out and walk the poor old dog when the temps stay in the 80s.

So in early June I was walking my dog and I was about 1/2 mile from my house. Thankfully, I was with a friend. I was so busy looking at some barking Rottweiler that I step on this thick branch. My ankle rolled and it was slow motion after that. I spent a few seconds trying to catch myself from falling. I busted up both hands pretty badly as well as scraped my ankle. I thank god that I was wearing pants versus shorts or my leg would have been a mess. I had a split in my right hand and I should have gotten a stitch in it but I refuse to go to doctors!! My left palm was scraped and my left hip had a bruise that covered the whole side of my butt. I was fairly traumatized. Walking can be hazardous to your health!!!

Do you have any problems getting around Disney or do you have to use a ECV or anything?

 

[luvmarypoppins]

When I am in Disney I rent a wheelchair. I use it like a walker and then when I am tired I will sit in it and dh will push me.

I do sit in it for the parades etc. There is no way I could stand for that long of a time etc.

I usually walk to an attraction then sit in it so I can sit in the handicapped section, like shows, since I would probably hold everyone up with how slow I walk etc.

When we eat I just leave it outside the restaurants.

I dont think I would rent an ecv. Those things are difficult to manage and a hassle to load into the buses etc.

 

[mrsklamc]

Is there anywhere you could swim or do like a low impact water aerobics?

 

[luvmarypoppins]

Micayla - Thats an option but its a hassle to drive to dh work (they have a pool there) and its only for a short time its open and there are kids allowed too, but I might check it out sometime. Its called family swim nights I think.

Ds told me I could come to the pool where he lifeguards but its only 4 1/2 feett deep so I doubt it would help.

Oh I also found out why they kept cncelling my july endo visit months ago , like 3 times and then they finally gave me the early July date. My endo is going to Greece! So funny because she asked us what our summer plans ere and I said dh is going to Greec on business and then she said she was too with her 3 kids. (She is Greek). She says she goes every year. This lady is so skinny. I did notice that she was yawning during my visit. I think I was the last patient of the day (note to self: dont be the last patient of the day again).

Jenn - if you are following along, check in! We want to hear about your Disney trip! Of course I want to hear your Tutto experience.

 

[Christine]

I've got my last-minute trip finalized. I'm leaving at 3AM on Friday morning. God, I can't believe I'm going to drive.

Anyway, I am going to eat at the diner I love that is in Celebration one night.

I have ADRs for Sanaa, The Wave, and Artist Point. I also have one at the Captain's Grille for breakfast one day. I may add one more in while I'm there depending on how things go. Wouldn't mind trying the pizza at Via Napoli.