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Discussion Starter · #1 ·
Hello all! Good to meet you and hoping I can get some thoughts/advice. I have a toxic multinodular goiter - I'm one of those lucky few! :)
Not so quick background: Mom has NON toxic multinodular goiter, cousin on mom's side had thyroid cancer, mom's sister, dad's sister, cousin on dad's side, dad's mom have Hashimotos.
Back in October 2019, I started having constant diarrhea and a bit of indigestion/gas. Got thrown on PPI for 2 weeks and told to change my diet (anti-reflux). Didn't help (maybe helped the indigestion/gas) so they told me to stop with the PPI. I must've had some sort of rebound reflux or it threw my thyroid into overdrive (no testing done that point so not sure) but I started waking up with the WORST taste in my mouth and the diarrhea was still there. They of course, threw me back on the PPI and sent me to my GI. At that point I was having insomnia, lack of appetite, anxiety on top of the diarrhea but I couldn't tell if it was the PPI or the thyroid. Did all those fun GI tests including a colonoscopy! Only to find out I had low TSH.
GI sent me back to my GP to have more tests but he didn't believe it was my thyroid as GI issues were my ONLY symptoms - he figured my heart rate would be high, sweating, etc. Sure enough in November of 2019, TSH was 0.37 (0.55-4.78), FT4 was 1.2 (0.9-1.8) and my T3 was 196.8 (60-181). He also tested TPO which was 61.7 (<60) - endo later told me that means I will most likely have thyroid issues for the rest of my life? So I got referred to an endo which I had to wait a month for. While waiting, I got the OK from my GI to wean myself off of the PPI and started feeling a bit better. I can't honestly remember but I may still have had diarrhea at that time, but I know I didn't feel as bad as I originally did and figured things were getting better.
Not according to my levels - beginning of December 2019, TSH was 0.10, FT4 was 1.3 and T3 was 180.1. He also did TRAb at that point which was <6% (<16%). Since I didn't have horrible symptoms and my levels were barely off, he wanted to wait 3 months and test again.
So February of 2020, TSH 0.03, FT4 1.5, T3 248. Also did TSI at that point and was <89% (<140%). So no Graves for sure.
Sent me for RAIU end of March 2020 - 6 hr 13.4%, 24 hr 27.9% (no reference ranges) but seems like it's fine, maybe high. Showed a few nodules in the right side and they said the "findings favored to represent toxic multinodular goiter). I also have a lot of cold nodules. It doesn't really say WHICH nodules were hot and WHERE they were located. Start of 5mg Methimazole 1x/day beginning of April 2020.
Somewhere shortly after, my calves/shins broke out in a rash. I called endo end of May where he did my levels again - TSH 1.75, FT4 1.0, T3 115.8. He was comfortable with me trying to go off the meds to see if it caused the rash. The rash never went away so I wound up going to a dermatologist who said it was eczema related, gave me steroid cream and it went away.
Had an ultrasound in June 2020 - found the 2 nodules on the right side the RAIU found, one cystic, one solid - both TIRAD 5. FNA 2 weeks later - cystic one I believe was indeterminate (not good enough sample) and solid was benign.
More tests end of June - TSH 1.1, FT4 1.1, T3 145.2.
More tests end of September - TSH 1.39, FT4 1.0, T3 126.8.
Since I'm "leveled", in March of 2021, endo only did TSH w/Reflex to FT4 (no idea the different) 0.81 (0.55-4.78). You can obviously see my TSH is trending down at this point but still normal. Scheduled for another Ultrasound October 2021.
Cut to 2-3 weeks ago, diarrhea started up again, indigestion, lack of appetite and anxiety (this horrible constant feeling of nervousness, nothing I have EVER experienced in my life and it's crippling). Called endo and more tests - TSH 0.33, FT4 1.3, T3 162.1. Subclinical hyperthryoidism. Endo didn't think the "barely low" TSH would cause my symptoms but I was having symptoms when it was 0.37 - granted my T3 was barely out of whack too. He gave me two options - stick it out until October when I have more bloodwork done and have the ultrasound, or start back on meds. I can handle the diarrhea, the indigestion is tolerable at this point and the anxiety SUCKS but if I keep telling myself it's my thyroid, I'm doing OK. I decided to stick it out as I'm an engineer and data means something to me and I want to see where my levels are out without meds in 2 months.
I know toxic multinodular goiter is not a things that goes away. It will always pump extra hormones into my body which is why I think my levels are again trending that way and I'm feeling like this.
I don't know what to do from here. All the information out there is for Graves, but not much for TMG. I DEFINITELY don't want RAI but my endo has given me the option of being on a low dose of Methimazole for life (assuming we can get it evened out) or PT. I've read a lot of studies that long term low dose MMI is safe (assuming it doesn't mess with your level/WBC). Assuming that doesn't work for me, I'm petrified of PT because I have no evidence that taking out half will help as the RAIU only described the larger nodules it found, not really where/which nodules were hot.
Anyone else out there with (or maybe now without) a toxic multinodular goiter? What were your levels like? What is your treatment like?
Anyone out there with subclinical hyperthyroidism (honestly barely) with symptoms?
Any stories/words of wisdom would be helpful at this point. Feeling alone and freaking out a bit.
Thanks in advance :)
 

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Welcome!

Sorry to hear about your diagnosis. My experiences are with Graves and being hyper so I will do my best to comment. Have they by chance run a TSI antibody test to rule out Graves disease?

Based on what I know about Toxic Multi Nodular Goiter and my experiences being hyper and on Methimazole - is there any reason they have not suggested surgical removal? Reason being - one and done and replacement hormone for life. It's easier to stabilize thyroid hormane when there is not a diseased thyroid in your body. Nodules are random at what hormone they cause to be spit out. My thyroid was filled with nodules, I was on Tapazole 4.5 years and know people who have been on it over 20 years. My issue with Tapazole was body ache and pains. Post TT and being on replacement hormone is a breeze compared to being on Anti thyroid medications.

When your body is experiencing alot of thyroid hormone movement all sorts of symptoms appear randomly. I had wicked hives and tons of allergies prior to my Graves diagnosis which mostly resolved post Tapazole.
 
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Discussion Starter · #3 ·
I had TRAb and TSI done - both negative so no Graves.

Surgical removal will be the last step if meds don't work. Endo will want to take half of my thyroid as my suspicious nodules are only on one side with the hopes that the other side will take over. I didn't have any side effects when on Methimazole and it brought my levels up the first time so I wouldn't mind being on it long term if it was possible. But it's good to know that if I keep suffering in the mean time, surgical removal sounds like a good route.

Sounds like you've had yours out and you have/had Graves? If that's the case, also sounds like you've been much better off this way?
 

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Yes - my thyroid was removed to Graves - I also had very high TPO antibodies and surgeon said I had Hashitoxicosis which is basically hyper and hypo happening at same time.

Long term Methimazole works as long as your liver is happy. I've heard of people being on it for over 25 years.
 
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