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.
Hi Sophie
I have the same. I used to be hypothyroid with nodules and one turned overactive and I became hyperactive. I was also told to take I131 to kill my thyroid but I opted for Methimazole. I started at 10 mg once a day but cut to 5mg as it made me feel hypo. I take a lot of vitamins and L-Carnitine to help lift my stubborn TSH, which is finally increasing. I'm going for another blood test Mondy though as I'm feeling very hypo again. There's a split opinion as to whether or not the nodule will resolve and stop overproducing hormone, so I'm playing the waiting game. I've heard too many negative stories of problems replacing hormones after killing it.
Are you symptomatic? My only symptom was weakness and feeling faint. I think we caught mine very early.
Hang in there and research the supplements to use for hyperthyroidism. Others here will give you good advice on things to do as well.
hugs
Jaye xo
Hi Jaye and thank you so much for your response. How long have you been dealing with the overactive nodule? I've had the nodule since 2014 and it's now become activee. I asked my Endo about taking meds, shich she said I could, but she believes i would be on it for life because although you can control the hyperthyroidism, the nodule will always be there and needing treatment. The whole thing is just overwhelming right now. My smptoms have been weight loss (over 50 lbs), body aches, hair falling out, dizziness, no appetite although I can eat. My endo doesn't believe those are hypert symptoms but my PCP does.says yes they are. How long has it taken you to get the TSH level up? Good luck with your appointment, I hope you get good news.
Hugs back to you
Sophieanne
Hi Haye,
One more thing,. I hardly sleep.
Hi Sophie
I've had large nodules (2 large and 3 small) since 2007, that I know of. I might have had them longer. I've had many fine needle aspirations and annual ultrasounds. I was diagnosed hyperthyroid last September after a summer of feeling faint and weak. A nuclear uptake in October confirmed one large nodule was the culprit.
Do you know what your blood test readings are? My T 3 & 4 were not much out of range but my TSH was .001 for a long time. After I started Methimazole, it climbed every so slowly. I think L-Carnitine helped bring it up. My TSH is still below normal range, showing me as hyper, although I don't feel hyper at all. I've been dieting and managed to lose almost 30 lbs since January but have been stalled since I started feeling hypo again about 3 weeks ago.
I'm still on 5MG of Methimazole. My Endo wants me to burn the thyroid out as she says it won't reverse but my PCP said he has seen it reverse in other patients and that being on low dose Methimazole long term isn't harmful. So I'm going to ride it out with diet and supplements, hoping one day to get off the med or even take it a few times a week.
Try not to worry. I know it can be scary but nodules are so common. Many people have them. The overactive ones are a pain, I know. Your symptoms do sound hyperthyroid. Were you hypothyroid prior to this overactive nodule? It would be good to see your TSH and other readings to know how much meds you'd need to take.
My first Endo said to take the med for up to a year then taper to see if I could stabilize. I wouldn't let the docs scare me into drinking 131. I know it's overwhelming. I'm sorry you're feeling so bad. Burning your thyroid out is permanent which is why I'll try any other options before doing so, even if it means staying on low dose Methimazole long term.
If you have your most recent blood test results, please post them. Were you tested for antibodies btw? For Graves and/or Hashimoto's? Did you have any illness prior to the nodule going overactive? I had a horrific case of Labrynthitis - a virus hit my inner ears - veritigo, nausea, so sick for a week, then constant dizziness for at least 2 more months. I think that caused the nodule issue.
Hi Jaye,
I had a parathyroidectomy is 2012 but i've never been hyperthyroid before this nodule.
My values:
T3 - Range 80 - 240. Me 240
T4 - Range 0.7 1.6 Me 1.1
TSH - 0.01
My endo says i'm slightly hyper. I had tests for antibodies and they all showed no autoimmune diseases.
I'm learning that stress is not good..puts my body in constant pain.
I'm so glad you wrote, gives me food for thought.
Sophie
Hi Sophie
That's about what my numbers were last August. Slightly hyper. But your T4 is below normal range. I don't know about parathyroid so I looked it up on NCBI and found this.
Conclusion
Transient hyperthyroidism is frequent after parathyroidectomy for (Transient hyperthyroidism after surgery for secondary hyperparathyroidism: a common problem) with Tg being a suitable marker. Awareness of this self-limiting disorder is important to avoid inappropriate and potentially harmful treatment.
So maybe one plays on the other? I don't know enough about but it's good to do lots of research before doing anything permanent. Maybe a second opinion by another Endo?
Maybe look into supplements and yes, stress is a trigger for thyroid issues. My PCP felt mine could have been caused by severe stress and grief during my husband's illness and passing.
I hope you feel better soon and get to the bottom of why your TSH is .001. Thryoid imbalance can cause you to feel horrible. Hang in there xo
Thanks Jaye. Definatrely a lot tto consider. My PCP thnks I should do RAI because of the past parathyroid. We don't have the best doctors where I am.
My TSH is .01, not .001 if that makes any difference in thinking.
Have a goiddat.
Hi, it might help you to make an appointment and talk to your radio surgeon. You could ask if they can administer the dose such that only the hot nodule is targeted.
What exactly scares you about this treatment method? I am asking because, in principle, it is ideal to treat hot nodules as the Iodine is quickly concentrated in the tissue of the hot nodule. The radiation that ultimately causes the shrinking of the nodule consists of beta rays (high-speed electrons) that have a range of only a few millimetres in human tissue making it possible to pinpoint the nodule itself.
If you are worried about radioactivity in general then you should know that our body is well equipped to deal with small amounts of radiation as the cell repair themselves. We are surrounded by natural radioactive atoms in our environment and even our body contains radioactive atoms. Moreover, we are constantly bombarded by by-products of cosmic radiation for example in the form of muons (the heavier cousin of the electron). Several hundred muons traverse your body every second without you even knowing.
Your doctors are likely to suggest the treatment method with the best possible outcome and the least amount of risk.
Hi danR and thank you for your note. I'm not sure individual nodules could be targeted, i've been told you take a piill and it destroys the entire thyroid.
The reason I'm reluctant is that it is such a permanent solution, once it's done there's no turning back. I just want to be sure i'm doing the riight thing.
I understand and would also be reluctant at the prospect of having my entire thyroid destroyed. Before taking such a drastic step I would try all other options like Jaye.
As far as I know, only autonomous hot nodules can be individually targeted. These autonomous nodules do not respond to a suppressed TSH and continue to absorb iodine and produce thyroxine even when the rest of the thyroid has shut down. In an uptake scan, these nodules look like bright areas whereas the rest of the thyroid appears dim.
You might want to have a look at this publication: Efficacy of low doses of radioiodine in the treatment of autonomous thyroid nodules: importance of dose/area ratio. (Sorry only the abstract is freely available on the net.)
Hi Dan and Sophie
I wish they could just inject the hot nodule rather than involving the entire thyroid. I've read of other treatments which are available in other countries. Ethanol ablation which I'd never have. eeek - just the thought. But Intense ultrasound ablation, which they do use on other parts of the body, sounds interesting. I believe they use it for fibroids. I'm not sure why it didn't take off like 131 did for nodules. Maybe there are complications? I periodically keep an eye out for new methods of treatment. ;-) I'll post if I find anything.
Thank you Dan. I'm eager to read all I can.
Hi Yaye. I'm like you, there should be aa way. Will keep looking too!
Hi...I know you had your blood test yesterday. Any results yet? I'm cheering for you!
Hi Sophie
Thank you for thinking of me :-) I haven't gotten blood results yet. I probably won't know for about 3 or 4 days. I'll post back!!
Hope you're feeling better. Any news with your results?
Waiting is the hardest part of all of this. My endo and GP want me to do RAI...i'm just working through my thoughts on that right now.
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.
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.
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?