Need advice - enlarged thyroid

[Lisa100]

Hi:

I just got over a bad head cold and chest cold. While I had a cold, my thyroid got visibly enlarged. I took extra Tapazole while I had the cold, since my pulse rate when up so much. I just got my blood test results, and the endo called me and said he wants to see me tomorrow instead of waiting for my scheduled appointment next week because my levels were weird. My TSH was 48 and my Free T4 was 0.2. I never had a high TSH, and I have had Graves for about 5 years now.

Do you know what is going on? I am worried about what he will want to do and what happened. I am wondering whether these results could be the result of taking extra medication, or I have a tumor. Any ideas?

Thanks so much!
Lisa

[nasdaqphil]

Sounds like you took too much Tapazole. How long before your test did you give yourself the extra doses?

A .2 FT4 and TSH of 48 is pretty well into the hypo side of things. Sounds like you had med-induced hypo. Once you go back to your regular schedule you'll speed back up and the TSH should drop and FT4 will go up unless of course your thyroid decided to finally crap out on its own.

Make sure you tell your doc you took extra meds and how much extra.

By the way, you should realize that the body still has natural defense mechanism's you shouldn't try to override, like faster heart rate and higher body temperature when you get sick. It does that for a reason to help fight off the bad stuff. Unless your rate was uncomfortably high, I would not simply take extra meds unless a doc says its ok first.

[Lisa100]

Thank you for your response!
My pulse went up really high, and I could barely sleep.
I should have called the doctor, but I was so sick and tired from this especially bad cold. Do you think the enlarged thyroid is from taking too much medication or from having a bad cold? My worst fear is a tumor or cancer, but it would be such a coincidence that this happened while I was sick and took extra meds.
I am also worried about the doctor's reaction that I did this on my own, but I guess that I have to face the wrath. :)

[Lisa100]

I forgot to say that I started taking extra meds about 10 days before the blood test.
Thanks again!

[nasdaqphil]

I don't think you have to worry about tumors or cancer right now. You could very easily have had an infection somewhere as a result of the cold which could cause some swelling of the surrounding lymph nodes and the thyroid itself adding to the discomfort of already being sick.

I think you'll be fine but if I was a doctor (and Im not) and I saw those labs, yeah, I would call you too and find out what the heck was going on. I'm sure most of this was a result of the combination cold/virus/infection and taking extra meds. You can't screw around with thyroid meds, really. You can easily hurt yourself accidentally and throw your whole system off. Now you are going to have to re-titrate to the proper level of meds for you and that will take a little while. It's a set back, yes but you are not going to die from it and hopefully can get your numbers back in line quickly.

Let's see what your doc says. I'm sure he'll re-test everything after those last labs. Just make sure you are honest with him so he can help you get adjusted properly. The last thing you want is the doctor to think you need a whopping dose of Synthroid to counter-act what appears to be a failing thyroid and then you turn even more hyper. If you tell him you self medicated he will know how to handle it properly.

[Lisa100]

I am very grateful for your objective opinions, that make a lot of sense. I know you are not a doctor, but I appreciate what you said, because I am too subjective and started to panic. You are right, I should tell the doctor the truth. And I will never change dosage like that again without calling a doctor. I have changed a bit here and there before, but this was a more significant change, and I just was not thinking!!!
Thanks again!

[Lisa100]

I saw the doctor today, and he said I should never increase meds without a blood test, which makes sense (He was not overtly angry though, which is a good thing). He did an ultrasound, and said it is just enlarged, no cancer or nodules. He told me to stop meds for 4 days, and then go to my maintenance dose, 7.5 mg. He passed my litmus test for a doctor: he did not try to do something that would have been useless or harmful, although he did question my views on removing my thyroid or using radioactive medicine. I do not want to be hypo for the rest of my life.

Again, thank you so much for your answer. You really helped me when I needed it the most.

[nasdaqphil]

Well that's good news. Your doctor sounds like he understands thyroid problems well enough and I'm glad he put your mind at ease about the cancer. Thyroid cancer is usually a really slow growing type of thing....you don't usually wake up with a fat thyroid and have cancer but a good cold, infection or antibody attack can aggravate it enough to swell.

I will not question your doctor's advice, however, if you feel like you are starting to get hyper after a day or two of no meds per his instructions, give him a call and let him know how you feel. Everyone's body responds differently to meds (or lack of meds) and 4 days might be a long time for you to go if you turn hyper fast.

It's not a big deal to call your doctor and simply let him know you think you are turning hyper again so he can advise you accordingly. I would not, however, recommend you self-medicate again. Good luck to you. Sounds like you are back on the right track.

[Andros]

Hi:

I just got over a bad head cold and chest cold. While I had a cold, my thyroid got visibly enlarged. I took extra Tapazole while I had the cold, since my pulse rate when up so much. I just got my blood test results, and the endo called me and said he wants to see me tomorrow instead of waiting for my scheduled appointment next week because my levels were weird. My TSH was 48 and my Free T4 was 0.2. I never had a high TSH, and I have had Graves for about 5 years now.

Do you know what is going on? I am worried about what he will want to do and what happened. I am wondering whether these results could be the result of taking extra medication, or I have a tumor. Any ideas?

Thanks so much!
Lisa

It sounds like from too much antithyroid med but there are other things that could cause this. Just being ill could cause it. Some other med you may have taken and/or eating a lot of soy or other goitrogens.

So, of course it is best to consult your doctor about this. And please do let us know.

[Andros]

I saw the doctor today, and he said I should never increase meds without a blood test, which makes sense (He was not overtly angry though, which is a good thing). He did an ultrasound, and said it is just enlarged, no cancer or nodules. He told me to stop meds for 4 days, and then go to my maintenance dose, 7.5 mg. He passed my litmus test for a doctor: he did not try to do something that would have been useless or harmful, although he did question my views on removing my thyroid or using radioactive medicine. I do not want to be hypo for the rest of my life.

Again, thank you so much for your answer. You really helped me when I needed it the most.



I am so glad to have read this this morning. All's well that ends well!

How long have you been taking the antithyroid med? That is not a huge maintenance dose so you must have been doing well?

[Lisa100]

Hey to the 2 special people who responded to my thread:

I thought 4 days is a lot to stop the meds, since I have been on them for about 5 or 6 years now without a day break, but I will play it by ear. I have been feeling good, despite the hypo blood values. I will not be playing around with the meds again. I never realized how potent they were, especially since I have been on them so long, I figured I had some kind of tolerance...but it obviously does not work like that.

I was happy that my doctor did not over-react when I told him I changed my own meds. I already beat myself enough over that.

I did not think 7.5 was a low dose. I had been doing that for about a year. But I was lucky enough to be able to take 5mg a day for a year or two prior to that. Why is it so darned hard to go into remission with this disease? Not many people seem to just be cured. I feel better being on these meds though, than doing either surgery or radioactive iodine. I do not want to be hypo forever.

Anyway, thank you both for your advice and support!! It is nice to know there are such kind people out there. I wish you both the very best!!

Lisa

[Andros]

Hey to the 2 special people who responded to my thread:

I thought 4 days is a lot to stop the meds, since I have been on them for about 5 or 6 years now without a day break, but I will play it by ear. I have been feeling good, despite the hypo blood values. I will not be playing around with the meds again. I never realized how potent they were, especially since I have been on them so long, I figured I had some kind of tolerance...but it obviously does not work like that.

I was happy that my doctor did not over-react when I told him I changed my own meds. I already beat myself enough over that.

I did not think 7.5 was a low dose. I had been doing that for about a year. But I was lucky enough to be able to take 5mg a day for a year or two prior to that. Why is it so darned hard to go into remission with this disease? Not many people seem to just be cured. I feel better being on these meds though, than doing either surgery or radioactive iodine. I do not want to be hypo forever.

Anyway, thank you both for your advice and support!! It is nice to know there are such kind people out there. I wish you both the very best!!

Lisa

Lisa; in my life-time, I have seen patients go into temporary remission but never permanent remission. That is not to say it has not happened; I just have not seen it and I have been on boards and forums for many many years.

So, one might want to digress over what the difference might be for taking an antithyroid med every day or taking thyroxine replacement everyday. On the long haul, Graves'/hyperthyroid is very very hard on the bodily organs; especially the heart. Also the antithyroid meds are very hard on the liver and I do trust that you are getting your liver enzymes checked if not quarterly, at least every 6 months?

No matter what route you chose to follow, we will be here to support you.

It sounds like your doc has his/her act together. I am glad for that.

Keep us informed please..........

[Lisa100]

When I first got Graves, I read that in Europe, 30% of cases go into remission. I wonder why. If I can get back to 7.5 or less a day, I will feel satisfied. My previous doctors always checked my liver enzymes. This guy doesn't do it all the time, but I asked him if he could do it every 6 months, and he said okay. I know there are pros and cons to each treatment option, but I really don't want surgery or radioactive iodine. My last doctor said that at some point, my thyroid will probably stop working, but I think she meant when I am older.

I also wonder how long it will take for my thyroid to be less enlarged. This is a pain in the neck (no pun intended). Oh well, time will tell.

Thanks again!
Lisa

[Andros]

When I first got Graves, I read that in Europe, 30% of cases go into remission. I wonder why. If I can get back to 7.5 or less a day, I will feel satisfied. My previous doctors always checked my liver enzymes. This guy doesn't do it all the time, but I asked him if he could do it every 6 months, and he said okay. I know there are pros and cons to each treatment option, but I really don't want surgery or radioactive iodine. My last doctor said that at some point, my thyroid will probably stop working, but I think she meant when I am older.

I also wonder how long it will take for my thyroid to be less enlarged. This is a pain in the neck (no pun intended). Oh well, time will tell.

Thanks again!
Lisa

The choice is yours and we are here for you. Did that cohort say permanent remission or did they not say?

Lisa, please keep us informed of your progress. And, yes.............an inflamed thyroid can be very painful and also cause trouble swallow and breathing if it continues to enlarge.

I presume you have had an uptake scan somewhere along the line here?

[Lisa100]

I thought they said permanent remission, but it's been a few years since I read that, so not sure.
I had the uptake scan years ago, and got the worst headache in the world from the pill they give you to take before the scan. So I never want to do that again.
I will keep you posted.

[Andros]

I thought they said permanent remission, but it's been a few years since I read that, so not sure.
I had the uptake scan years ago, and got the worst headache in the world from the pill they give you to take before the scan. So I never want to do that again.
I will keep you posted.

I was thinking and have been told that a nice ice-bag on the neck (goiter) sometimes helps it go down and subsequently the pain lessens. You might like to try that.

Worried about you.

[Lisa100]

Thanks!!! I will try that. I am not in pain, so it's okay. Just don't like to see the large thyroid. This too shall pass. Thanks again!!

[Andros]

Thanks!!! I will try that. I am not in pain, so it's okay. Just don't like to see the large thyroid. This too shall pass. Thanks again!!

Yes, Lisa...............it "will" get better and we are here for you when needed and even if not needed!:party0006:

[Swift]

Hi Lisa

I have just read through this whole thread and just wanted to say that here, in the Uk, I have always been told that thyroid blocking meds should not be used for more than two years because of damage that may occur to the liver.

Just a suggestion, but could you ask for a liver test a little more often than every 6 months? It's probably better to err on the side of caution here :)

I was on these meds for two years and ended up having Iodine treatment. I am not sure it's the best way to go now (I was never offered surgery) but i think there is a good argument to get off blocking meds. Just my opinion :)

hugss

Jan

[Lisa100]

Thanks Andros! My thyroid is shrinking in size. Yipee! I followed the doctor's orders and stopped the meds for 4 days, and today started back on my usual dose of 7.5. I think it was a combination of too much meds and my cold.

And thanks Jan. All of my doctors tried to get me to do either the RAI or surgery. But I would rather take these meds. My liver tests always came back normal. I will try to get them done more often, but I don't think the doctor will go for it. I was the one who told him to test the liver every 6 months. I think he wasn't going to do it more than once a year. I really want to see if I can go into remission one day. If I lose my thyroid, there is no hope for that. I will be dependent on hormone replacement for life.

Thanks for the great help everyone.
Lisa

[Andros]

Thanks Andros! My thyroid is shrinking in size. Yipee! I followed the doctor's orders and stopped the meds for 4 days, and today started back on my usual dose of 7.5. I think it was a combination of too much meds and my cold.

And thanks Jan. All of my doctors tried to get me to do either the RAI or surgery. But I would rather take these meds. My liver tests always came back normal. I will try to get them done more often, but I don't think the doctor will go for it. I was the one who told him to test the liver every 6 months. I think he wasn't going to do it more than once a year. I really want to see if I can go into remission one day. If I lose my thyroid, there is no hope for that. I will be dependent on hormone replacement for life.

Thanks for the great help everyone.
Lisa

Hi, Lisa. I sure am glad your thyroid is shrinking! That is very good news. And you have every right to try as if you don't, you will always wonder about it.

Hugs,

[Andros]

Hi:

I just got over a bad head cold and chest cold. While I had a cold, my thyroid got visibly enlarged. I took extra Tapazole while I had the cold, since my pulse rate when up so much. I just got my blood test results, and the endo called me and said he wants to see me tomorrow instead of waiting for my scheduled appointment next week because my levels were weird. My TSH was 48 and my Free T4 was 0.2. I never had a high TSH, and I have had Graves for about 5 years now.

Do you know what is going on? I am worried about what he will want to do and what happened. I am wondering whether these results could be the result of taking extra medication, or I have a tumor. Any ideas?

Thanks so much!
Lisa

How are you doing, Lisa? We have not heard from you lately?? Hope all is well!