Question for the DIS doctors -- thyroid related

[MushyMushy]

I know it's not good turning to the internet with questions, but I kind of got hit with all this at my doctor's office on the way OUT the door, so I have to wait for answers until I can call them tomorrow (if they're even there).

I've had a sore throat since late November -- severe laryngitis and upper respiratory ailment. Missed 3 days of work it was so bad. My sore throat has not gone away. At times it's mild and other times it's pretty bad. Yesterday it felt like I had a lump in my throat and it hurt when I touched it from the outside.

I'm hypothyroid, take 200 mcg of Synthroid and have been having symptoms (extreme fatigue, dry skin, sensitivity to cold, losing hair, etc), so my doc ordered me some bloodwork done. When he felt my throat, he said it was my thyroid and shouldn't be so tender like that and wants me to get a thyroid scan/uptake, which involves going off my Synthroid for 5 weeks and an iodine pill with the scan.

I'm not so worried about the test, but I cannot go 5 weeks without my Synthroid! I will NOT be able to function. If I even go a few days without my meds, I start to feel bad, so I cant' even imagine going 5 weeks, let alone the time it'll take to get readjusted once I'm back on.

Have any of you been through this and have words of advice? I'm thinking of getting a second opinion with a specialist, but I just want to know what to expect here. I actually cried today just thinking of going off my meds! It's unfathomable to me.

Thanks if you read this far. I know it's long and I'm rambling.

 

[crz4mm2]

I had to go off my meds for 4-5 weeks before I had thyroid surgery (to get the required scans). I always thought you weren't supposed to stop taking thyroid meds but that's what they had me do
I felt like crap the whole time.
I hope I never have to do that again!

 

[3prettyprincesses]

Oh, I'm sorry you're feeling this way. I have Hashimoto's and it's a real pain in the neck. Is this dr. an endocrinologist that you're seeing? When will your bloodwork be in? There's nothing wrong with getting a second opinion. I wonder too if you could just do an ultrasound instead of the whole uptake scan which would mean you wouldn't have to go off your medicine. I've never had the scan done but have had ultrasounds because my endocrinologist said he could see my thyroid from across the room! What a lovely compliment. Anyway, the ultrasound was totally normal, I just have a large thyroid gland. So, I'd ask your dr. then if perhaps you could do an ultrasound. I'm sorry I don't have anymore advice than that though since I've never had a scan. Good luck!

 

[hellokitty86]

At first my Dr. wanted me to have a thyroid scan because my neck looked really swollen. When he heard of the 5 week requirement he changed his mind because he didn't want me to go off my meds under any circumstances. He recommended a thyroid ultrasound instead (they found nodules on my thyroid and I have to have another ultrasound this month to see if the shrank or if any more formed). Maybe ask your Dr. about an ultrasound instead? It can't hurt.

I really sympathize, it would be horrible going off meds for 5 weeks. I am having more blood work done this month too, I think my meds need to be uped! Feel better soon..

 

[hellokitty86]

Oh, I'm sorry you're feeling this way. I have Hashimoto's and it's a real pain in the neck. Is this dr. an endocrinologist that you're seeing? When will your bloodwork be in? There's nothing wrong with getting a second opinion. I wonder too if you could just do an ultrasound instead of the whole uptake scan which would mean you wouldn't have to go off your medicine. I've never had the scan done but have had ultrasounds because my endocrinologist said he could see my thyroid from across the room! What a lovely compliment. Anyway, the ultrasound was totally normal, I just have a large thyroid gland. So, I'd ask your dr. then if perhaps you could do an ultrasound. I'm sorry I don't have anymore advice than that though since I've never had a scan. Good luck!

I didn't see this post before I replied! Great minds think alike....

 

[Christine]

Well, I had thyroid cancer so my treatment is a bit different than for usual thyroid disorders. I would probably get a second opinion. It seems that an ultrasound would be more warranted than a scan. A scan is going to show if you have nodules and whether those nodules are functioning or non-functioning. It will also show any areas of inflammation.

An ultrasound is going to show an image of any lump you have but it won't tell how this lump functions (hot or cold). You will also be able to accurately measure your gland with an ultrasound so any swelling would be evident.

Prior to my thyroid being removed, I did have the uptake scan; however, I wasn't on meds (just my own hormones there) and the scan worked fine. I think maybe the synthetic thyroid hormone impedes the iodine used for the scan from absorbing like it should.

 

[3prettyprincesses]

I didn't see this post before I replied! Great minds think alike....

Yup, they sure do!

 

[clovergirl5]

I know it's not good turning to the internet with questions, but I kind of got hit with all this at my doctor's office on the way OUT the door, so I have to wait for answers until I can call them tomorrow (if they're even there).

I've had a sore throat since late November -- severe laryngitis and upper respiratory ailment. Missed 3 days of work it was so bad. My sore throat has not gone away. At times it's mild and other times it's pretty bad. Yesterday it felt like I had a lump in my throat and it hurt when I touched it from the outside.

I'm hypothyroid, take 200 mcg of Synthroid and have been having symptoms (extreme fatigue, dry skin, sensitivity to cold, losing hair, etc), so my doc ordered me some bloodwork done. When he felt my throat, he said it was my thyroid and shouldn't be so tender like that and wants me to get a thyroid scan/uptake, which involves going off my Synthroid for 5 weeks and an iodine pill with the scan.
I'm not so worried about the test, but I cannot go 5 weeks without my Synthroid! I will NOT be able to function. If I even go a few days without my meds, I start to feel bad, so I cant' even imagine going 5 weeks, let alone the time it'll take to get readjusted once I'm back on.
Have any of you been through this and have words of advice? I'm thinking of getting a second opinion with a specialist, but I just want to know what to expect here. I actually cried today just thinking of going off my meds! It's unfathomable to me.

Thanks if you read this far. I know it's long and I'm rambling.

Gosh, I don't blame you for being concerned. I probably would get a second opinion because that is a long time to be off synthroid. I too, take synthroid for hypothyroid and feel horrible when my thyroid goes wacko and meds need to be increased. The tiredness alone is awful. I can't imagine 5 weeks with nothing.

 

[MushyMushy]

Thank you so much -- you actually have been a help. I just wondered if there were other options before having to do something drastic like going off the meds. I'm definitely going to ask about the ultrasound route. He might not have realized it would be 5 weeks because he made the comment that I may have to go off the meds for a "couple of days." Big difference!

 

[hellokitty86]

He might not have realized it would be 5 weeks because he made the comment that I may have to go off the meds for a "couple of days." Big difference!

He very well might not realize. My Dr. didn't until I called and scheduled the thyroid scan. I called him back to make sure he realized the situation and that's when he told me he wasn't comfortable taking me off my medication. Hope you find a solution soon!

 

[luvmarypoppins]

I would ask about other options too. I have had it all because of thyroid cancer, The ultrasounds, biopsies, radiation,etc.

My synthroid dose is also 200.

I didnt have to go hypo for the one scan. I got 2 shots of thyrogen. I a m having another 1 year post op radiation scan in may probably and I will have to see what they are going to do for that.

I couldnt imagine being without the meds for that long either. Best of luck to you!!