# Hyper to hypo and back? Goiter gets bigger as day goes on?



## jani_3

Hi everyone,

I recently (5 weeks ago) had RAI for a toxic adenoma on my thyroid which was causing me to be hyperthyroid. I had quite severe symptoms and a barely there TSH level. My Endo said that i had a 1% chance of going hypothyroid because on the scans it looked like the rest of my thyroid was protecting itself from this adenoma and was suppressed/sleeping - they didn't expect it to take up much, if any, of the RAI. Anyways, 4 weeks out and I was feeling like I was struggling. I didnt need much propranolol to get through the day anymore, which for me was a miracle! I had my 4 week blood tests as recommended to find that my TSH was now 14.30 and my free T3 and T4 were both highly suppressed. It seems once again I feel into that 1% category - There is only a 5% chance of someone my age getting hyperthyroid due to toxic adenoma :S

Anyways, moving on....my doctor and endo both called immediately wanting to start me on Synthroid .75mg I have been on them for one week now but yesterday I had an awful day...it felt like I was going back to some of my hyperthyroid symptoms - racing heart, shaky hands, dizzy spells, anxiety/difficulty breathing at times and I have had a hard time sleeping the past few nights again...despite being tired all day. So my question is two-fold:

1. Has anyone ever found they go between hyper and hypo symptoms after RAI? I just worry that if I wasn't actually going hypo and it was just an after effect of the RAI and now i am taking Synthroid I will make myself feel worse.

2. I also find that i now have this MASSIVE goiter. I always had an enlarged thyroid that i could see and feel but yesterday it was soo big that all of my family and some work colleagues commented on it. It felt like it was overtaking my trachea! I also find that this goiter gets bigger as the day goes on - in the morning I barely feel it on the inside but by evening its massive. Has anyone noticed this too cos when I ask the doctors about it they say "Oh really?" but don't answer my question!!!! It's the same look they give me when they thought I was exaggerating my hyperthyroid symptoms just because I tested negative for graves disease.....only later for them to find out I had a considerably large toxic adenoma on my thyroid making me ill!! Open your minds doctors! Why would I lie about my symptoms..there is no secondary gain for me to feel this crappy!

Anyways, if anyone can offer some input or personal experience that would be kindly appreciated.

Thanks


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## Andros

jani_3 said:


> Hi everyone,
> 
> I recently (5 weeks ago) had RAI for a toxic adenoma on my thyroid which was causing me to be hyperthyroid. I had quite severe symptoms and a barely there TSH level. My Endo said that i had a 1% chance of going hypothyroid because on the scans it looked like the rest of my thyroid was protecting itself from this adenoma and was suppressed/sleeping - they didn't expect it to take up much, if any, of the RAI. Anyways, 4 weeks out and I was feeling like I was struggling. I didnt need much propranolol to get through the day anymore, which for me was a miracle! I had my 4 week blood tests as recommended to find that my TSH was now 14.30 and my free T3 and T4 were both highly suppressed. It seems once again I feel into that 1% category - There is only a 5% chance of someone my age getting hyperthyroid due to toxic adenoma :S
> 
> Anyways, moving on....my doctor and endo both called immediately wanting to start me on Synthroid .75mg I have been on them for one week now but yesterday I had an awful day...it felt like I was going back to some of my hyperthyroid symptoms - racing heart, shaky hands, dizzy spells, anxiety/difficulty breathing at times and I have had a hard time sleeping the past few nights again...despite being tired all day. So my question is two-fold:
> 
> 1. Has anyone ever found they go between hyper and hypo symptoms after RAI? I just worry that if I wasn't actually going hypo and it was just an after effect of the RAI and now i am taking Synthroid I will make myself feel worse.
> 
> 2. I also find that i now have this MASSIVE goiter. I always had an enlarged thyroid that i could see and feel but yesterday it was soo big that all of my family and some work colleagues commented on it. It felt like it was overtaking my trachea! I also find that this goiter gets bigger as the day goes on - in the morning I barely feel it on the inside but by evening its massive. Has anyone noticed this too cos when I ask the doctors about it they say "Oh really?" but don't answer my question!!!! It's the same look they give me when they thought I was exaggerating my hyperthyroid symptoms just because I tested negative for graves disease.....only later for them to find out I had a considerably large toxic adenoma on my thyroid making me ill!! Open your minds doctors! Why would I lie about my symptoms..there is no secondary gain for me to feel this crappy!
> 
> Anyways, if anyone can offer some input or personal experience that would be kindly appreciated.
> 
> Thanks


Soooooooooooo; you are six weeks out from the RAI? It could be that your gland is rebelling the dying process. This is called engorgment and would indicate to me that the adenoma was vascular.

Did they ever do a biopsy on the adenoma?

Let us know.


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## jani_3

Hi Andros - No they never biopsy the adenoma. They said that because it was hot it meant that there was little chance it was cancer and therefore no need to biopsy. They just went straight in with the RAI but now the lump in my throat which was annoying before is REALLY big and it feels like its overtaking my trachea sometimes. I am going back to see the doctor next week even though they tell me 'Oh dont worry about it, its fine" my mum has thyroid problems too but hers never did this so she is taking me back there to make sure this is the right treatment. I didn't realise that the enlarged thyroid would actually get LARGER after RAI???

What does "vascular" mean?


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## jani_3

I know what "vascular" means...I just mean...in the contect of an adenoma, what does it mean for me? I thought most adenoma's had no blood flow to them.


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## joplin1975

There are certain characteristics of nodules that are semi-"red flags": solid, vascular, calcified, etc. It does NOT = cancer, but it does mean cancer needs to be ruled out, if possible, by a FNA.


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## Andros

jani_3 said:


> Hi Andros - No they never biopsy the adenoma. They said that because it was hot it meant that there was little chance it was cancer and therefore no need to biopsy. They just went straight in with the RAI but now the lump in my throat which was annoying before is REALLY big and it feels like its overtaking my trachea sometimes. I am going back to see the doctor next week even though they tell me 'Oh dont worry about it, its fine" my mum has thyroid problems too but hers never did this so she is taking me back there to make sure this is the right treatment. I didn't realise that the enlarged thyroid would actually get LARGER after RAI???
> 
> What does "vascular" mean?


Hot adenomas are not "usually" cancerous. Hmmmmmmmmmmmmmmm! I think that leaves a lot to be desired.

Vascular means a blood flow; hence the engorgement and straight up here..............cancer usually has it's own blood supply/source. This is not carved in stone, of course.

Bottom line; I am so glad to hear that your mother is going to advocate for you. Please, please let us know the outcome.


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## jani_3

Yes, Andros, I agree. There have been A LOT of statements my family doctor and Endocrinologist have said that leave a lot to be desired. I rarely ever get answers from either of them even when I ask them directly. They keep trying to put me in the average percentile of clients with my problem but throughout this whole process I have proven to be in the lower percentile..(most hyperthyroid patients have graves, 5% have toxic adenoma...I had the latter. I had a 1% chance of going hypo, especially not so quickly, after RAI...but 4 weeks afterwards I had swung completely the other way).

So long story short....we are going back to the doctor because something doesn't feel right. I feel like I have both symptoms now. My thyroid is struggling to work, if at all, now yet this lump in my throat keeps growing...and its weird how it gets bigger as the day goes on...I haven't met ANYONE with that problem which is why I posted here in hopes someone would say "Oh yeah, that happened to me because...." as I have asked my doctor and Endo about this and they just say "hmm really?" but don't answer it. They probably think I'm lying but Ive had people notice the changes my neck goes through in the course of a day.

I appreciate both of your comments though. If anything, it helps me to feel heard by someone cos I don't feel heard by my doctors.


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## Octavia

Shot in the dark here, but do anti-inflammatories help calm your angry thyroid down?


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## Andros

jani_3 said:


> Yes, Andros, I agree. There have been A LOT of statements my family doctor and Endocrinologist have said that leave a lot to be desired. I rarely ever get answers from either of them even when I ask them directly. They keep trying to put me in the average percentile of clients with my problem but throughout this whole process I have proven to be in the lower percentile..(most hyperthyroid patients have graves, 5% have toxic adenoma...I had the latter. I had a 1% chance of going hypo, especially not so quickly, after RAI...but 4 weeks afterwards I had swung completely the other way).
> 
> So long story short....we are going back to the doctor because something doesn't feel right. I feel like I have both symptoms now. My thyroid is struggling to work, if at all, now yet this lump in my throat keeps growing...and its weird how it gets bigger as the day goes on...I haven't met ANYONE with that problem which is why I posted here in hopes someone would say "Oh yeah, that happened to me because...." as I have asked my doctor and Endo about this and they just say "hmm really?" but don't answer it. They probably think I'm lying but Ive had people notice the changes my neck goes through in the course of a day.
> 
> I appreciate both of your comments though. If anything, it helps me to feel heard by someone cos I don't feel heard by my doctors.


Well, honey bunny! Let us know and I sure hope everything is okay!!! So far, no one has stepped out saying they have experienced the same thing. Hopefully we all will learn something of value here.


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## jani_3

Octavia - I haven't thought of that. I do take anti-inflammatorys on a some-what regular basis due to the amount of headaches and shoulder pain I get from car accidents. So it's hard to say. Maybe tonight when my thyroid enlargens I will try taking some and see what happens!! The only thing I have noticed for sure is that it is considerably smaller in the morning and gets bigger as the day goes on.

Andros - yeah, no one seems to have experienced this same thing which is disappointing but I will just have to wait and see what happens and what comes out of this. I know my doctor said that he thought maybe the RAI may have caused some scar tissue which is causing the lump sensation in my throat and that down the track I will have to get it surgically removed. Time will tell I guess. Thank you both for your responses.


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## jani_3

PS - my family doctor is on holidays hunting for the next 3 weeks and my endo is booked up until she takes her maternity leave....so I have to wait at least another 3 weeks to see someone. Maybe in that time it will work itself out - hopefully!


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## Andros

jani_3 said:


> PS - my family doctor is on holidays hunting for the next 3 weeks and my endo is booked up until she takes her maternity leave....so I have to wait at least another 3 weeks to see someone. Maybe in that time it will work itself out - hopefully!


Maybe your docs are not there for you right now but don't forget us. We "are" here for you. Always! No matter what!


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## jani_3

Thanks Andros. That helps!


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## Andros

jani_3 said:


> Thanks Andros. That helps!


Let us know if there are any new developments! How is the engorgement? Still happening?

If you have a problem or are very worried which I know you are, you "can" go to emergency services; correct?


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