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Radation for hyperthyroid ??

Posted , 4 users are following.

rebecca5678
rebecca5678

Hello all, here is my backstory. Was getting ready to move out of state and had my physical . Blood work came back abnormal TSH 0.01 and T3, T4 were high, so GP ordered ultrasound and uptake. Ultrasound found 4 nodules 10-13 in size and uptake was 96%. That was in April 2015. Upon moving took me a year to get in with someone . In that time was on 5 mg of methimazole. Now like in the last few days. Have had more blood drawn another uptake and ultrasound . Nodule has double in size and uptake is still high . TSH is still at 0.01 but T3T4 are normal . I'm not so sure I want Radation . I'm going to be scheduled for biospy and of course if it isn't good then will take appropriate action but most of the biospies turn out to be begin . Any thoughts ???

1 like, 28 replies

28 Replies

  • icecool
    icecool rebecca5678

    Posted

    I have limited knowledge however I think that you have to be guided by  the biopsy result.

    Not easy waiting I know but hopefully it will get done very soon.

    • rebecca5678
      rebecca5678 icecool

      Posted

      I will see what results are , just was like whoa in a years time it doubled in size. That is scary. Thanks for your comment !
    • icecool
      icecool rebecca5678

      Posted

      You are very welcome. It can seem a lonely place out there with this condition in particular I find. I don't know why though.

       

  • linda187
    linda187 rebecca5678

    Posted

    You are right, most biopsies of thyroid nodules are benign.  However, if it is malignant, it requires surgical removal of the thyroid.  My cousin had this and they misdiagnosed her for a long time.  Personally, for me I did not want to lose or destroy my thyroid and most doctors will push for that even if you have an autoimmune disease and no malignant nodules.  I am glad I held my ground because I did a lot of research and when I added supplements to the medical treatment I was given with Methimazole, my TSH which had been less than 0.001 for two years began to rise and my doc could lower my medication dose.  Currently I am taking  2.5 mg of Methimazole every other day and supplements.  
    • rebecca5678
      rebecca5678 linda187

      Posted

      I think I'm gonna hold my ground too , unless biospy comes back malignant . What supplements ? I feel my body is doing this for a reason so I am going to try cleaner eating .

  • VeeveeJames
    VeeveeJames rebecca5678

    Posted

    Hi Rebecca,

    I was diagnosed with a multi-nodular thyroid back in Nov 2015 by ultrasound. One of the nodules measured 3cm which i thought was huge...my consultant wasnt worried at the time as my bloods were fine! In Apr 2016 i had repeat bloods which should TSH of 0.03. Consultant diagnosed hyperthyroidism caused by a toxic multi nodular thyroid 2 weeks ago. His first suggestion was RAI which scared me to death - but it turned out I cant have it anyway as my kids are 5, 2 & 1...he then prescribed Carbimazole 10mg and if that fails surgery! I was worried about taking the meds because of side effects, but lots of lovely people on this forum have advised me that such a low dose should give too many side effects. I just want to wish you good luck with your biopsy...your not alone in this crazy thyroid world....love & positivity sent your way x

    • icecool
      icecool VeeveeJames

      Posted

      Hi

      I Have several nodules non cancerous thankfully. However my endo will not presceibe carbimazole due to as he puts it the possibility of neutropenia.

      He suggested RAI but did nothing about it. I am unable to tolerate L Carnitine it has adverse side effects on anyone such as fast heartbeat, seizures, stomach cramps etc, etc.

      So all in all I am loki.ng round now to try to get a second opinion.

    • rebecca5678
      rebecca5678 VeeveeJames

      Posted

      Thank you for your comment and positivity !!! I admit I wasn't expecting the growth to be so fast and now 20cm. Maybe that is why my voice goes in and out. Or maybe not. I feel confident it will be fine. I agree with low dose side effects. I had to stop medication for thyroid uptake and start back and to be honest and I can't really tell the difference in symptoms. The blood tests are what I'm going by. Really thought I was premenopausal . But had that tested and that was a no. I really want the meds to work. There is just something that doesn't feel right about the Radation . But then again I have been on the meds for a over a year and stinking TSH won't budge. Hope the meds work for you !!! Sending positive thoughts ,back your way!

    • VeeveeJames
      VeeveeJames icecool

      Posted

      Hi...the neutropenic side effect did worry me if im honest. My consultant didnt do a biopsy on my nodules as apparently 'they look ok' even though ive read that all nodules should be checked....I havent tried L Carnitine but ive heard lots about it. Is there an alternative to Carbimazole that you could try - im new to this so not too sure!

      Im just hoping to feel better soon - as im sure we all our, the symptoms are horrible aren't they? Hope you get your 2nd opinion soon & get on the road to recovery ? x

    • rebecca5678
      rebecca5678 icecool

      Posted

      I sorry to hear you are having such a hard time. Hopefully you can get a 2nd opinion and get some help. I would read, research all you can for yourself . I feel sometimes the endocrinologist don't really think it's a big issue .

    • VeeveeJames
      VeeveeJames rebecca5678

      Posted

      Totally agree with the voice issues - mine does the same! & the menopausal thoughts, im 37 & thought 'this is earlier than expected'! Im hoping the menopause is easier than is - time will tell! x

    • linda187
      linda187 VeeveeJames

      Posted

      Even though I was on a relatively low dose of 10 mg of Methimazole, my specialist always checked for liver tests and blood tests for neutropenia every time I saw him.  I have never had a problem with this and I think it is just an issue with higher doses of the drug but I am glad he followed it all the time anyway.
    • icecool
      icecool linda187

      Posted

      The endo said that most people are on carbomazole for life .
    • linda187
      linda187 icecool

      Posted

      I have never totally stopped it.  I was diagnosed in 2007 and am currently on 2.5 mg four times a week.  If I had to take this the rest of my life, it wouldn’t bother me.  Many people who have posted to Boards do stop it when they are euthyroid (normal thyroid tests) and normal antibodies and will restart it if symptoms return but I know many who have been off of it for 9 years.  I am just a little scared to stop it entirely.
    • rebecca5678
      rebecca5678 VeeveeJames

      Posted

      Lol!! Hoping menopause is so much easier too !!! I'm going to be 45 and still not there!

    • rebecca5678
      rebecca5678 linda187

      Posted

      I'm glad the medication is working for you. I hope it does for me too! My endo says it's not a long term med for Graves but if I have the liver , kidney blood tests done to check to make sure everything is good , I'm not sure why I can't stay on it. But again have to wait to have biospy to determine course of action . I was a former smoker so that plays on my mind.

    • icecool
      icecool linda187

      Posted

      Well I tend to agree in principle perhaps the endo is just being over cautious.
    • icecool
      icecool rebecca5678

      Posted

      Hi Rebecca

      I think your edo is good. If carbimazole was that dangerous then no one would prescribe it surely?

      Is it possible to PM your endo's contact details ?

    • linda187
      linda187 rebecca5678

      Posted

      I smoked for 20 years and have quit now for 31 years.  Best thing I ever did.
    • icecool
      icecool linda187

      Posted

      I have never smoked . Good for you giving it up as I know gfrom advising people that it is not easy in fact nicotine is more addictive than heroin .
    • icecool
      icecool linda187

      Posted

      whoops typos. Good for you. As a former health advisor I know that nicotine is more addictive than heroin .

      Do you think smoking can cause/exacerbate  thyroid problems a all?

      How did you cope with quitting smoking?

    • linda187
      linda187 icecool

      Posted

      A friend and I quit at the same time.  She started back and then quit again.  She still craves it.  I don't.  A psychologist told me, "Smoking is a learned behaviour and anything learned can be unlearned".  It was about a 3 month process for me and I had lots of support and "attagirls" from everyone around me, especially at work.  I did it a day at a time.  Each day I thought about how I had learned it and then reversed that.  Most of it was over in a month but at about the 3 month mark,  I was photographing a wedding with a friend and I used to do weddings.  I always lit up between the bride's house and the church.  This last time, I remembered that and unlearned that one too.  No problems with it since.

    • linda187
      linda187 icecool

      Posted

      I think smoking definitely worsens thyroid problems.
    • rebecca5678
      rebecca5678 linda187

      Posted

      That is amazing Linda!!! I have only been quit a few months . It's been the hardest thing I have ever done !!! I'm still taking day by day . I joined a quit smoking forum , I think that has been the biggest help. People going through the same thing helps tremendously !! Just like in here. Yes I think smoking messes with the thyroid .

    • rebecca5678
      rebecca5678 icecool

      Posted

      No, he wants me to do the Radation but I want to try to give the medication a try . The reason being is that I have waited a year to be seen and my primary didn't really no too much about the disease . He cut my meds even though my numbers weren't better , I was doing Zumba because I quit smoking and instead of feeling better I was feeling worse , extremely exhausted, felt like my heart couldn't calm down and I asked him about it the primary and said I should do more. Finally get to the endo and he says no cardio , only slow walking. So I would like to get on a steady strength of meds and see if the numbers improve . I think he should at least try to give it some time before just saying do the iodine Radation .

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