Posted , 5 users are following.
Hi..I was tested as having hyperthyroidism. This week I took an uptake test as i've had nodules for a a few years and it was found i have a hot nodule. My doctor wants me to take the radioactive pills. The thought scares me. Has anyone else had this and how did you deal with it??? Thanks.
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JayValle sophieannejune
Posted
I hope you can normalize on meds. My second Endo, who I'm not seeing anymore, pushed the RAI. My PCP said I could stay on 5 mg Methimazole long term, and maybe the nodule activity would resolve. My first Endo was, wait and see. I see him again in October and depending on my numbers, curious what he has to say.
sophieannejune JayValle
Posted
Hi J. How are you doing? Don't mean to be a broken record but wondering if you got your blood test results back. My tests only take day or two..i know everyplace is different.
I'm scheduled to see the Endo tomorrow. Decision time. It's so hard not being on meds (because of the problem i previously had). My stress is totally off the chart. I have to be honest i've felt worse ever ssince I had the nuclear scan. I'm seeing my GP this afternoon to see what she has to say.
I hope I'll hear from you soon and will read you're doing great.
JayValle sophieannejune
Posted
Hi Sophie
Sorry it took so long to get back to you. I just got my results this afternoon. Good news. My TSH is still below normal but it's going up! It went from .05 in June to .12 as of last Tuesday. So it basically doubled. The Endo sent me a note that I'm slightly better (although I feel MUCH better) and I'm only taking 2.5 mg Methimazole. I see him in October for consult and retest. But I'm not having RAI as my T 3 & 4 are perfect and now that TSH is rising, I'm hoping nodule is resolving. I can say this: it's smaller!
What did you decide to do? Sorry I couldn't get back to you before your Endo appt. Are you still symptomatic? Have you tried Methimazole yet? I started at 10 mg last January. Dropped to 5mg in April or May. And just reduced to 2.5 a few days ago because I felt overmedicated. So I think TSH is normalizing even without a lot of meds.
I take a lot of vitamins. C, D, A, Zinc, L-Lysine, LipoFlavinoid, Alpha Lipoic, L Carnitine, Stress B, B6, Magnesium, Ubiquinol, Acidopholis, Flax, Selenium. I might have forgotten some. I take mose at breakfast and the last 4 in afternoon with L Carnitine. Right now I'm taking 1000 mg of L Carnitine. I think it's helping TSH.
Please let me know how you made out and what you'll be doing. Oh, the Endo wrote me a note and said I'm mildly hyperthyroid. What are your numbers now?
sophieannejune JayValle
Posted
Hello..ii am so happy about your test result..yay!!!! I'm going to write more later as I'm waiting for the 3rd test result tht ws run on Tuesday. Will have iit sometime today.
Sophie
Butterflyhope sophieannejune
Posted
sophieannejune Butterflyhope
Posted
I''m so sorry to hear we're having the same problem. I am assuming you wrote Jay (above) who is in the same situation. I'm close to making a decision which will either be RAI or surgery. As the bad nodule is only on one side, a partial surgery would stop the hyperthyroidism and hopefully allow the other side to produce the needed hormone without the need for meds. I'm doing my research as we speak. When were you diagnosed? Do you have symptoms? What were your test results? Has an autoiimmune disease been Wiruled out? In my case it has, I just have a nodule gone bad.
Sophie
Butterflyhope sophieannejune
Posted
Thank you. Yeah it is a rough situation. They have ruled out Graves. Just 1-2 hot nodules. I do have symptoms. Racing heart, flutters, just tired and weak. I am taking a beta blocker to help with that. It does help some. I haven't tried any ATM yet. Sounds like I could try that first. I have had the nodules for years but the TSH test came back low just a month ago. Was normal before. It's now .05 - .1. so definitely suppressed. I feel like RAI or surgery is inevitable.
sophieannejune Butterflyhope
Posted
Hi again. It sounds like our background is similiar. I had the nodules since 2014 and had ultrasounds every year without a problem. I've had some bad health issues this year and am suspecting the 3 CT scans I had in April, May and June may have triggered the hyperthyroidism. I don't have Graves either. My symptoms are no appetite (although I can eat) and massive weight loss. I tried the ATM but ended up in urgent care one morning with every part of my body in pain. The ATM did increase my TSH from .01 to 1.32 in 12 days which was incredibe but no good since i can't take the meds. As I wrote earlier Jay has been doing incredible. You have to decide what is best for you. Are your nodules on 1 side only??? That's why i'm looking into possibly doing surgery. Good luck and i hope you'll stay in touch with me on your progress with this.
JayValle sophieannejune
Posted
Did you get all your test results back? I know you were waiting for one more. Did your Endo say the hot nodules are irreversible? How are you feeling now and did your levels drop again or are you stable?
Jaye xo
sophieannejune JayValle
Posted
Hi Jaye,
Yes, my results are still around the same (T3 dropped) as a couple weeks ago.
TSH .01 (s/b .45), T3 212 (s/b 200) and T4 1.4 (normal). Endo still says slightly hyper.
I asked if it's possible to go back to normal and she said not without treatment. She also
does not believe the nodules are reversable. I'm now looking at RAI or partial surgery. Will
know in the next week which will it will go. zIt makes me nervous when T3 is so close to normal.
Last night was the first time i slept for about 6 hours. That was great; however it's made me
feel horrible all day. Just feel dizzy/lightheaded all morning long. Still losing weight (but could be i have really restricted what I eat and it's all healthy).
How are you doing?
Sophe
JayValle sophieannejune
Posted
Oh boy. We're stuck with normal thyroids but nodules that require treatment. I've made up my mind, I'll be on low dose ATM for a long time. I don't want RAI and I can't have surgery. I don't do well with anesthesia. Plus they give you a cervical nerve block, which I'm concerned could trigger my migraines. I don't feel bad. I feel best on 2.5 Methimazole. I'm not like I used to be but I'm also still grieving over the loss of my husband so I could be feeling effects of both. Grief symptoms can overlap thyroid issues. My PCP thinks the stress of my husband's illness and my body breaking down caused the nodule to over produce, which is why he thinks it could reverse.
I never had hyper symptoms other than feeling very faint and foggy headed. I don't have the faint spells anymore but get foggy. I attribute a lot on the crazy weather too and sinus/allergies. So I'll hang in.
I hope you get the best treatment for your nodules. Please post back. I wish you the best :-)
hugs
Jaye
sophieannejune JayValle
Posted
Hi Jaye!
Wow..i want your PCP..my PCP always says this is my opinion but i'm not an endo.... I wish she was ).My endo thinks the 3 CTs i had earlier this year triggered the nodules, i keep hoping they can reverse but i can't get anyone who agrees with that. I hope yours does an about face as some point. Aren't your doctors concerned about the danger of long term med use??? I hadn't heard about the cervical nerve block..that doesn't sound plesant at all. I will be staying in touch with you as I work through this process. I just wish I could wke up and feel normal tomorrow. You take care of yourself.
xo Sophie
JayValle sophieannejune
Posted
Hi Sophie
Low dose ATM long term isn't bad - per my PCP. He shrugged it off as I'm only on 2.5 mg. I wouldn't feel comfortable taking anything higher long term. We keep testing my liver as well and the numbers are fine.
I know - the thought of what they'd need to do to remove the nodules is scary, any way you cut it. RAI scares me almost as much as surgery. I did consider it as it's the easiest route but the thought of maybe feeling worse as a result of killing the entire gland is too unsettling. How would we feel if they killed off our thyroids? I've read it's not always easy to find the right replacement dose. It's a toss up. The surgery to remove one side of the thyroid to get rid of the nodule isn't bad, it's just the means of it that's scary to me. Plus there are significant risks to the surgery such as accidentally damaging the parathyroid glands. Also, I was told you need to have beta blockers before/during surgery to prevent thyroid storm when they touch the thyroid. It's all too overwhelming for me.
How much ATM were you on when you had a reaction?
Just want to add, some patients say surgery was a good move, and some say RAI was. It's an individual choice and result. I hope my mentioning the above is not giving you anxiety about either treatment. I'm sure you'll be fine regardless of what you choose. Meantime, are you on any meds at all? Are you have very bad symptoms?
sophieannejune JayValle
Posted
Hi!
I was on 7.5 mg methimazole which was not a high dosage. Just had a really bad reaction toit. Current Symptoms are continued weight loss (60 lbs), 24/7 dizziness, no appetite and limited sleep. I think i almost prefer surgery sinc it's only 1 iside but i understand the risk. I just can't imagine feeling worse than I do.
You seem to have a lot of trust in your GP. More than your Endo??? I know 2.5 is a small amount but can it become a problem over time, a cumulative effect? (I really don't know is why i'm asking). I actually want to hear that you recover!!!!!
JayValle sophieannejune
Posted
Yes, I definitely trust my PCP more than either of the Endos I've seen. I first met him when I accompanied my sister to an appt. with him. I wasn't even a patient at that time. Was sitting in a chair in the office as he examined her and he looked at me and said "You have thyroid nodules." He knew by looking at my neck from across the room. I then became his patient. He's amazing. Smart and level headed.
7.5 mg isn't much but tbh, after a few months I couldn't handle even 5 mg. I started to get very lethargic and dark mood. It was awful. I could barely move, so I down-dosed without asking the Endo to 2.5 and feel pretty good. Have my incentive back and more optimistic. That dark mood was horrible. My original Endo thinks i'm still on 10 mg. I see him in Oct. My second Endo argued with me to stay on 10 even when I said it made me feel sick. She added, I should be taking even more. Go figure.
Can you feel your nodule? I can feel them on both sides of my neck. The right side is the overactive and was huge!! It's shrinking. I'm self-diagnosing: I have a feeling the nodule doesn't always overproduce. So when it doesn't, and I take the ATM, I feel lousy because I'm prob. low on hormone. If the nodule production is sporadic, it could account for ups and downs. I can imagine how Hashi pts feel. It's a terrible roller coaster.
sophieannejune JayValle
Posted
Hi again. Yes I can feel the nondule. In my case I was seeing 1 GI for sometthing and he said have you had that nodule checked? Since it had been monitored since 2014 i didn;t think about it. A second GI ran a blood test for something else and that's whhen the hyper... was found. I thought about lowering my dose of methimazole but was too afraid to do it after spending July 4th in urgent care. I'm glad you're able to monitor and change you're situation as needed. Do you have ultrasounds done to monitor the nodule?
I did, not that it helped in this case. Hope you're having a good Sunday!
JayValle sophieannejune
Posted
Hi Sophie
Yes, I've had annual ultrasound of my nodules ever since diagnosis in 2004. But I have no idea how long I had them before PCP diagnosed. I've also had numerous biopsies. I felt fine in 2004 even when I was hypothyroid, which blood tests showed. An Endo put me on Armour Thyroid suppression therapy. In theory, this is supposed to stop the nodules from growing by suppressing your thyroid. Unfortunately, they suppressed mine too well! The Endo wanted me at ZERO TSH. Can you believe it? He left the group so my PCP began treating me and immediately wanted me to stop the Armour, which I did in 2014. At that point I was about .50 TSH which was low normal.
What symptoms brought you to the ER when on Methimazole? Did they subside when you stopped the med?
I had a lovely day. I hope you did too.
sophieannejune JayValle
Posted
I must say you're endo did sound like pure evil. I'm not a big endo fan myself. I've read about doctors trying to put people into a hypo state cause it's easier to deal with. I would hope that's not true..but i'm wondering. I ended up in ER as I woke up on the 12th day of taking methimzole with extreme pain over every inch of my body. There were tests found and nothing could be found. The Dr. looked up the drug and found that it can cause all over myalgia. I stopped taking iit and 2 days later no pain. The Endo thought it was coincidence but that seems to see a standard response, gosh no one else i've dealt with had that reaction. Makes me crazy.
I haven't been feeling good so not the best day, but maybe tomorrow