Discussions that mention synthroid

Thyroid Disorders board


Ringbearer - (sorry - I don't know your first name)

My scan is scheduled for August 15th. I do not have to go off of Synthroid though. I am being injected with Thyrogen on Monday the 11th, then I will have the uptake on Thursday the 14th and the body/thyroid scan on the 15th.

Has your doctor told you about Thyrogen injections? If not, you should research. It is a drug that is injected so that you DO NOT have to go off your meds. It also helps to detect thyroid cancer anywhere in the body.

Did you have nodules? I had four and two of them were cancer. I just had radioiodine in January so it has only been 6 months. I want to have a baby which is why I requested my follow up scan now instead of waiting a year.

Let me know your results!

Laura
Laura,
I had one nodule on my right lobe. It was papillary cancer. I also have Hashi’s, but I never knew it before all of this. I hope you scan is good, so you can get on with your life!

Everyone,
I got the same info from my doctor about Thyrogen. He was all right with me using it this time if I wanted, but since I cannot be followed by blood tests for thyroglobulin, I have opted for the old fashioned approach this time. I don’t think I would be comfortable just doing a neck ultrasound, even if they offered it to me. Thyroid cancer can recur in areas other than the neck. I’m sure it is rare, but I am a worrier. Maybe I can have both!

Here is what is bugging me now. I can feel a small (bee bee size lump in the hollow of my neck, just above my incision site). It feels fixed and seems possibly on a strand or cord of tendon or something. It is visible when I swallow. This is very sudden, since I have, of course, kept a close eye on this area the whole time. It may not be a lump, as I cannot feel “around” it, just a slight forward protrusion, but you get the idea. I am so scared. I can’t eat or sleep and all this at the point when I am finally feeling the full effects of my lack of meds. I have been off Synthroid for 5 weeks and the Cytomel for the previous week now, and boy I am dragging. I have an appt on Thursday with my GP to get blood testing. I’m thinking of trying to see him sooner, if they can fit me in. I’m really a wreck, worse than the first time. Probably cause I know too much! I haven’t mentioned it to my family. Why worry them? They are all so sure I am fine.

I know they will have an answer for me soon enough, but it is making it hard for me to function! I really should be eating better. I am one of those people who don’t gain weight being hypo – wish I did a little. I have been hoping and praying for exactly the results you got Mars, but now I am thinking that isn’t going to happen. :(
Ringbearer-

I am sorry to hear you are so worried. I completely understand! I haven't worried at all since I had RAI and now that I need the scan I can't sleep at night.

I am not on the LID. My doctor never mentioned this. I am going to start it today since my scan is in two weeks. I can't imagine being off my synthroid.

Do you know why you are not doing Thyrogen?

I was told I have Grave's disease. Do you know if it is true that since I have Grave's a blood test won't help to determine if cancer or thyroid tissue is back in my body?

Laura
DD, it is great to hear someone with something similar that went away! The only other theory I have about it is that it may be scar tissue (I am 11 months out from my surgery however, and have never felt this before). Perhaps it is more noticeable because of water retention. My entire neck area seems a little full. I am very thin, and usually I have hollows in my neck and collarbone area. Now they all seem puffy, as does under my eyes. That, I am sure, is due to becoming hypo.

Laura, I have been on the LID for over a week now. My doctor also never mentioned it, but if the Thyroid Cancer’s Survivor Association recommends it, I figure it is still worth doing. I haven’t minded it as much as last time, and in fact have been eating rather well on it, with lots of fresh fruits and veggies. It has only been since I found this bump that I have lost my appetite.

My doctor gave me the option to use Thyrogen. He considers me low risk, and felt it would be fine. Here are the reasons why I opted to go the old route:

1. Since I have Hashi’s (no question there – I do have it – it was on my pathology and I have TPO antibodies), blood tests for detecting thyroglobulin levels are not accurate, so they do not help find recurrent cancer. As a result, the only way to effectively tell if I still have it anywhere in my body is the scan.

2. Although studies are showing that Thyrogen is turning out to be pretty much just as good as the other method, it is still new, and according to Dr. Arem’s book, The Thyroid Solution, it may not be as sensitive in detecting recurrent cancer.

3. Since I will need another treatment if this scan isn’t “clean,” then I would have to go off my meds anyway to prepare for treatment and another scan. It would be six more miserable weeks of worry before it would be over. This way I can immediately have the treatment and be feeling better by the time school starts. Also, I will take it better emotionally if I don’t have to wait and do all the dieting under those circumstances.

The first scan is statistically the most likely one to need further treatment, so a lot rides on it for me. If this scan is okay, I’ll plan to use Thyrogen next year. Does all of that make sense? I don’t know if Grave’s has the same effect on thyroglobulin. I have only read it does with Hashi’s, but the presence of antibodies may be the thing. You should ask your doctor.

I absolutely hate being off my Synthroid. I feel terrible, although I didn’t up until this weekend. Except for the lump thing, it has been going just as I planned and expected, maybe even better. Guess I was hoping for too much. Please keep us posted how this goes for you on the Thyrogen. I’ll be very interested to see how it compares. Good luck!
Hi Mimi - It is good to hear from you! I am so glad you didn't have to do RAI again. I am dreading the scan..only because I am worried there will be tissue left in my thyroid area and I will need RAI again.

I am VERY surprised that you didn't get the uptake AND the body scan. I was told that thyroid tissue/cancer can reoccur anywhere in the body. I guess the body scan is to look for cancer/tissue in other parts of your body.

I can't imagine being off of synthroid. I have felt 100% better since last February with no problems. I really really want to have a baby soon. If I need RAI again then I have to wait another six months.

My scan is next week, so I will post a message and let you know how it went. I don't know how long it will take to get the results though.

Do you have Grave's or Hashi's. I can't remember.

Laura