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My Name Is: New Inductee Into The Jacked Thyroid Club, What’s Yours?

Post Published: 15 February 2011
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Category: Dear Thyroid Letters
This post currently has 18 responses. Leave a comment

Thank you dear thyroid for the membership in your elite group. I was just diagnosed with Graves and a hyperactive thyroid. I have spent a month trying to convince myself this is a wrong diagnosis, this last blood work proved me wrong. I and very much in need of a way to accept this in the graceful “that’s just the way it is” type attitude i have always had, I hope to find it here. I even started a blog in hopes it may help me accept this with class.

~Cheers

Linda

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18 Responses to “My Name Is: New Inductee Into The Jacked Thyroid Club, What’s Yours?”

  1. Amanda says:

    Linda,

    I also have Graves Disease, diagnosed last summer. Enter into it gracefully? I can’t offer a bit of advice about that… Personally I chose to fight it kicking and screaming all the way. If you figure out the “grace” of it, I would love to read about that!

    Seriously, welcome. Sorry you had to join us, but we are all so glad you found this place. We can support, understand and commiserate better than anyone.

    I hate having Graves Disease, acceptance is a piece by piece thing with me. If I could “understand” it, then maybe acceptance would come.

    If I can be of any help, let me know….. amanda@dearthyroid.org

    Amanda

    • linda says:

      Amanda, thank you for the words of support, Seems all I do is cry, up until the past 2 weeks I never cried, I was never depressed, now I have succumbed to falling apart at the smallest of things. I will at some point rise up and battle this thing, it will not beat me. As you said Acceptance, I need to do that and right now I think I am just having myself a small one man pity party. My life is too important to me to let some badly named disease consume me. I do not understand the how’s whys and what to do yet, but I will, and when I do I will be stronger than before I had it, just another conquest.
      I do however think the name Graves Disease makes it worse, it’s such a frightening sounding name, and sometimes a name can make all the difference.
      I am so glad I have found all of you, I don’t feel quite as lost and alone as I did. Support is very important I am lucky to have found it.
      thank you, thank you…

  2. Gina says:

    Hi Linda –

    You have found the right group that is for sure. I was diagnosed with Graves’ disease quite a few years ago now and I had the radioactive iodine treatment. I wish I would have know of this community at that time, I’m not sure I would have proceeded in the same way. Be sure you find a doctor or other health care professional who can lay out ALL YOUR OPTIONS for you and not just radioactive iodine, and be sure you research for yourself what your options are. Have you had a thyroid scan? I had to have that as my final diagnostic piece. Best wishes, and remember, you know your body better than your doctors!

    • linda says:

      Thanks Gina, and thank you for the heads up on the RI treatment. I would never have given a second thought to refusing it, in fact, I was told since I can not take the Tapazole that was mu only other option other than removal, and removing it did not take away the symptoms. I did have a Thyroid scan, everything up to this point has been treated by my family Dr. I have been moved along to an Endo. but getting in to see him or any of them for that matter is months out. so in the mean time I just have to wait, I have a beta blocker for the heart palpations, and the tremors, but that’s about all it helps. I am sure I will be seeking more advice once I finally get into the Endo. But right now, I can’t thank you enough for point out the RI treatments, I will look for all options available.

  3. HDinOregon says:

    Hello Linda,

    Welcome to the club!

    With your membership in good standing, you are herewith allowed to vent, scream, commiserate, shout, and moan about your condition. And we shall listen, comfort, and electronically hug you and take you into our arm.

    That’s a promise!

    Welcome Linda,
    HD in Oregon

  4. Shan Kelly says:

    I remember not wanting to accept my diagnosis back in 2007 either, even though I was glad to finally find out there was a name for why i’d been feeling so dreadful.
    I have Graves too and when I was diagnosed in 07, my levels of T3 and T4 were the highest the technicians in Lewisham labs had ever seen. My doctors put me on beta blockers and carbimazole, which they kept increasing and told me I had to take my meds or I could die from Thyroid Storm. It took most of the rest of that yearto get the hyperactivity under control and the endos were relieved when I became hypothyroid in october. The problem was that being hypothyroid also makes your eyes swell, if you also suffer from Graves Eye Disease, and this can be very annoying. One problem with most treatment of Graves is that endos like to make you hypothyroid as it is much safer (for you and them). The trick is to get off meds slowly as soon as you reach a normal level, before your eyes start to swell.

  5. lp says:

    Shan thanks for that information, it was without question very helpful. My T level in Dec. was T2 and today it is 1. so I have been told by my family DR. . I do believe that the Graves began in the summer of last year, and I am hoping I have caught it early enough to do what ever needs to be done. I feel so uninformed and so over informed (if that makes sense. I just don’t understand the whole process and I don’t understand how I ended up with it. I had an allergic reaction to one of the beta blockers so now I worry I am not getting what I need. this is all very maddening. Not being able to get to an endo Dr till May just makes me crazy, I plan on going outside of my normal hospital to see if I can’t find one sooner.

  6. Shan Kelly says:

    hi Linda,
    There’s a few things you can do to take control while you’re waiting to see the endo.
    Excercise is great for helping to level out your metabolism and balance your thyroid. Doctors never seem to mention that. There are even some particular yoga poses that are vg for balancing the thyroid.
    you can try to cut out coffee and black tea and switch to herbal and drink loads of water. Some ayurvedic herbal teas – like chamomile – are particularly helpful. That strategy, along with meds and beta blockers helped me get my levels down to normal back in 2007.

    Then there’s vitamins and supplements. I spend ages trying to get a short list of the fewest supplements I need to take to stay well. When I get lazy about taking them, my eyes flare up or my symptoms change.
    You need to take a good multivitamin with zinc, copper, iodine, magnesium. L Carnitine is vg too, but it’s harder to find.
    Then you will find that antioxidants like Vitamins C,the Bs, Evening primrose oil, selenium and Co enzyme Q10 will also help a lot. I’d also reccomend buying Elaine Moore’s book on Graves Disease. She also has a web site which is fantastic where she will sometimes offer advice. Elaine is one of the main resons I had the courage to refuse the surgical options my opthalmologists and endos reccommended, becsause she explained that the rte of remission for Graves disease sufferers is quite high – about 70 per cent, I think.

    • linda says:

      Thanks Shan, I never gave much thought to what I should be doing till I see the Endo, I will be checking into the vitamins, also passing on the coffee. I will be checking out Elaine Moores book. Thank you for all the insight. the more the feedback the better. I do a lot of palates and some yoga, I will have to ask if any of the instructors know of poses that would be beneficial. With that said, I am taking advantage of the fact that mentally and physically today is a good day. makes me wonder what I did differently to have such a change in my mental and physical health.

      Again Shan thanks for the info, I think I will be buying a new book today

  7. Sharklet says:

    I’m really pleased you found my note helpful> Good Luck Linda. You could ask your yoga teacher about doing the shoulder stand – it’s tricky, but is meant to help balance the auld gland.

    🙂

  8. Glad to meet you Linda and welcome to this amazing group! There is a lot of support here for you. Always remind yourself that the disease is named after the doctor Robert Graves who discovered it. I promise you, you will find your grace.

    Lisa

  9. Lori Riordan says:

    I have been diagnosed with hyperthyroidism and Graves Disease….only on Friday, so still waiting to see Family Doctor today and Endro later this week. It is very scary with everything I have read.

  10. linda says:

    Lori welcome to this wonderful group. As a new member i will tell you i was given a great deal of insite and tons of support, i was welcomed like family. In an effort to pay it forward i will give you something that helped me, research, research, research. Please read Shan Kellys posts on my wall, that was the best advice i have ever taken. Question your endo Dr. about any and all meds you are taking, we found out yesterday my graves may have been caused from taking lithium for 19 years, my ultrasound showed nothing, but yet by neck appears to be inlarged. see more than one Dr. and ask 100s of questions. I hate to cut this short but i am chatching a flight out of Miami to the Islands. I will log on while I am away. You will be fine and you are in good company. be strong and please read Shan’s post.

    Cheers,
    ~linda

  11. Marlene says:

    Hello,

    I was just diagnosed with Graves Disease. My blood test show the very high. I have alot of pressure behind my eyes, and have blurry vision at times. I also have crazy heart palpitations. Can anyone tell me about the Radioactive Iodine Therapy. Does it hurt? Does it effect your brain?

  12. linda passantino says:

    iodine uptake, is totally painless, its a pill in a bottle. a scan of your neck and your knee (yes your knee). more time consuming than anything,

    This past Monday, I received a call my levels spiked, I need to take the test again (3rd time). my vision is also becoming blurry and my eyes tend to ache. This may be. Graves’ ophthalmopathy. Please let your Dr know of this problem, mine started a few weeks ago.

    It is y understanding that there is a pill to destroy the thyorid rather than surgery, i have not done much research as of yet.

    Please keep me posted and be well, and be happy, we will all get through this.

    Cheers,

    ~linda

  13. Marlene says:

    Thanks Linda, today I went to my Endo and he said my Grave’s is worsening. He increased my Methimazole from 20 mg to 40 mg a day. I also had an ultrasound today. I will know next week of my results. The pressure on my eyes has decreased. But my vision is still blurry at times. I am praying my eyes do not protrude. I do a lot of public speaking, with my job, and I am terrified of this. Especially because I am the only one working in my family of 5. Does anyone know if the holistic approach works? I heard honey is good on your eyes at night?

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