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Thread: Hopefiully finally getting my thyroid sorted!

  1. #1

    Default Hopefiully finally getting my thyroid sorted!

    Hi everyone

    Just thought I'd give you an update about a part of my health which has given me much more grief than CP has. About 4 years ago, I was diagnosed with hyperthyroidism due to Graves' Disease. Pretty sure I posted about it here. Anyway, since then, I have been on antithyroid agents to control my thyroid levels. My symptoms have never really been that severe but I have experienced things like tremors, palpitations and breathlessness, which can be quite scary.

    I started on a very high dose which was decreased steadily. Then for about a year, the levels were controlled enough that I was only on one tablet a day and had my sights on coming off them, but in December, my blood test levels suddenly went beserk again (as evidenced by the symptoms I was experiencing) and the doctor increased my dose to 3 tablets/day. I was also referred back to the specialist that originally diagnosed me, who recommended that I look into radioactive iodine therapy. She'd talked about it before, but at that stage my thyroid eye disease wasn't stable enough for me to have it safely.

    Anyway, I decided I would like to pursue it and hopefully get things sorted once and for all, and the appointment has finally come up - scheduled in a couple of weeks. Essentially all I will have to do is drink a tiny amount of radioactive iodine mixed in water. My thyroid will then absorb it and it will kill off the excess hormone, thus hopefully curing the problem.

    Drinking radioactive liquid sounded pretty freaky to me at first but having looked at the research and the amount of people who have received it over the last 40 or so years, it seems to be one of the safest options; safer in the long-term than continuing to take antithyroid medication. There is a risk my thyroid will become underactive in which case I will have to take thyroid replacement medication, but again research suggests this is safer than taking antithyroid medication because it doesn't carry the same risks of heart issues and osteoporosis.

    In terms of "recovery", I just have to stay away from pregnant women and small children for a few days as I will be somewhat radioactive. Other than that, I should be able to go to uni, work etc as normal, which is good.

    I'm really keen to get this sorted and not have to have blood tests, doctors' appointments and prescription renewals every 3 months! If it wasn't for my thyroid issues, I would hardly ever go to the doctor. The last time I went to the doctor for a non-thyroid related issue was to have a mole taken out and that was in April of last year! I don't think I have even had a cold the last two winters. So I'm hoping doing this will lead to truly great health!

    One other positive thing is that I have been working out lately, as some of you will have seen on Facebook! A friend of mine has recently opened up her personal training business and is helping me get fit at a very discounted price. I am doing things I wasn't even aware I could still do, like climb stairs! It is a great stress reliever for me and I am starting to notice a difference in my fitness levels.

    Anyhow, I'll let you know how the radioactive iodine therapy goes! Fingers crossed it works!
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

  2. #2
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    Tyler's mom also has been battling Graves for several years. She has absolutely refused the radioactive iodine or surgery. She is trying to control her thyroid with low dose meds, diet and exercise. Right now she looks marvelous, but the meds put on weight and when her numbers are off the chart her eyes start to bug, get super dry, she has the palpitations, racing heart, exhaustion etc. Hope the therapy works for you and you don't go hypo. Enjoy your working out. I bought Bonnie a FitBit and it was the best investment I could have ever purchased for her. Made a world of difference in her. She lost about 40 lbs., walks twice a day and is sure to get in way above her 10,000 steps.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Congrats on the working out! I saw the stairs post on fb....awesome!! That does sound weird to drink radioactive water, but the benefits sound really worth the few days of being radioactive. Hope school & work are going well for you! :)

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((CPChick)))))) ~

    The thyroid is such an important gland, as I've learned through researching hypothyroidism for Jon. I highly recommend Mary Shomon, the thyroid guru on the internet.

    http://thyroid.about.com/

    Has your adrenal gland been tested? The adrenal and thyroid glands are closely related, and both of them produce vital hormones.

    My prayers are with you that the radioactive iodine conquers your thyroid imbalance.

    How fantastic that you are working out and climbing stairs! I'm not on Facebook, but I'm excited for you that you've found a place to help you.

    Prayers that all goes well for you ~ I'll be looking for your update here ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Interesting conversation... Kathleen has had hypothyroid since she was 2 and was recently diagnosed with Hashimotos. When we saw the endocrinologist I think she blew it off way too fast and I plan on mentioning this to the dr. we will be seeing in Boston. I agree the thyroid is so important and it affects every cell in our body. Kathleen has one eye that bulges.
    Mary Grace

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    Yikes, this is scary and pretty amazing that you will drink something radioactive! I have hypothyroidism that caused me terrible problems when I was in my 20s, but with meds it's fine. Good luck, Erin!!!!
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  7. #7

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    Thanks for your well wishes! It's interesting how many people experience thyroid issues!

    Tamie - I can identify with those symptoms and the pills. Sometimes when the palpitations have been really bad, I swear it feels like I'm about to have a heart attack. I really hate the feeling. Putting weight on is something I can attest to, too -- I experienced that after I started taking them, but I think I am losing a bit of weight with the exercise now. Not my aim, but a nice side effect! Good luck to Tyler's mum, Tamie!

    Rose - will check out the link! I have had a look at some info/research through the years but nothing too substantial. Facebook is a blessing and a curse! I'm glad we have another way of keeping in touch. :)

    Mary Grace - Hope you are able to get some more answers for Kathleen! Looking back on old pics, before I was diagnosed with Graves, my eyes bulged quite a bit!! It's weird because I didn't really notice it at the time.

    Donna - thanks! It is a bit scary but nothing invasive or too drastic. Glad to hear your thyroid issues are under control now.

    Lisa - thanks! Work and uni are both very busy. Not sure how I am going to survive these next few months... but just have to get through them. Bring on Dec 18 (the date I will finally be done with everything!!!
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

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  9. #8

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    Just thought I'd give you all a quick update as I had the radioactive iodine this morning!

    The appt was stress-free and the hospital was even running early so actually got out only 15 mins after my scheduled time! Just met with the specialist who went through all the info again and got me to sign a declaration to say there was no chance I was pregnant (she said usually they do a pregnancy test but I assured her that there was absolutely no need, lol). Then had blood taken and went through to the area where they administer the treatment.

    It is all kind of closed off with warning signs everywhere... radioactive this and that. That was probably the scariest part. Had a nice chat with the technician while the doctor confirmed the dosage I needed. I asked her about the reactions she gets when she tells people she works in "nuclear medicine" (that's what the dept is called!) and she admitted that sometimes she avoids telling people the specifics. Anyway, the doctor just came in and told her the dose, which the technician then mixed in about 50ml of water. It was really a tiny amount... and I just drank it through a straw.

    Just have to take some precautions over the next wee while like using my own cutlery and not being near children under 10 and pregnant women for prolonged periods of time over the next couple of weeks, which I never am anyway. I imagine it would be quite disruptive for teachers though as they would have to take that time off work! She recommended I don't go to my lectures today but said I could go tomorrow as long as I didn't sit right next to anyone (which actually, I don't anyway, because the lecture theatres are tiered and I have to sit in front of the rows, so everyone sits behind me)

    Right now I am not on the meds I have been on but I have to start taking them again in a few days, then reduce them a week later. Follow up appt in 6 weeks so we'll see how it goes.
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

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  11. #9
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    ((((((CPChick)))))) ~

    Sending up prayers right now that this works for you, and that you have no adverse side effects. I can sure understand that this would be a bit scary. I hope that you found something on Mary Shomon's site to give you some insight on this treatment.

    I'm so glad that the hospital was friendly and caring toward you.

    Try to relax and think positive thoughts.

    Hoping you have a great report at your 6 week follow up appointment!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    How are you feeling now, Erin? Have you had any side effects? Sure hope this works- it's scary! Sending a hug to you, xo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


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