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  • Told today I have HASHIMOTO'S...now what?

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    Old 01-05-2005, 09:44 AM   #1
    Txmomma6
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    Told today I have HASHIMOTO'S...now what?

    I have to start a steroid pack for 3 weeks, and then take a .325 mg. aspirin after that, I guess for the rest of my life. Doc said somedays I will be great, others I may not be so great, so if I need to take my steroids, then he would call it in. I called husband at work, who is an RN on the Telemetry nurse (10 yrs...I do think he knows what he is talking about too), and he says I don't want to take the steroids for a long period of time. 3 weeks is fine, but not to continue. He says patients come in who have been on steroids their whole life have paper-thin skin and veins, and their skin is hard to heal. He says I need to get the thyroid out. After speaking with him, and speaking to the doctor, I WANT IT OUT!! I am also nursing a baby, but doctor says it's fine to take the steroids, but I am kinda leary about that. Should I wean her cold-turkey? She turns 1 yr on Feb. 2nd. She doesn't take the bottle that well, or the sippy, nor does she eat very well.

    Blood tests were done Dec. 23rd, and results are: TSH is 0.9, calcium and blood count are normal. The auto antibodies (did I type that right?) are elevated, so that is why he says I have Hashimoto's.

    I know 2 ladies who had their thyroids taken out...they are doing fine. Another lady I know has Hashimoto's as well, and she is doing poorly, as me.

     
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    Old 01-05-2005, 10:11 AM   #2
    Its Megan
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    Re: Told today I have HASHIMOTO'S...now what?

    Why would you have to take steroids? I dont understand. I have hashimotos and I was never told to take steroids...so Im just confused.

     
    Old 01-05-2005, 10:14 AM   #3
    Txmomma6
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    Re: Told today I have HASHIMOTO'S...now what?

    I don't know why really...

    but, I just got off the phone with husband. He talk to one of his doc. friends up there at the hospital. He is an ENT doc. He said that ENT said that I won't have to have the thyroid taken out, and that the steroids will eventually kill the thyroid. He says I may only have to take it a few times after this 1st treatment, and then it should be "killed."

    Don't know all the details and all. Still looking up stuff on the net about it. I am going to tell my friend about what I am going to do. Maybe it will get her better too.

     
    Old 01-05-2005, 10:16 AM   #4
    Its Megan
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    Re: Told today I have HASHIMOTO'S...now what?

    Hmm i see. Well good luck with that! Hope you feel better soon!

     
    Old 01-05-2005, 10:31 AM   #5
    lucky charms
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    Re: Told today I have HASHIMOTO'S...now what?

    Quote:
    Originally Posted by Txmomma6
    I have to start a steroid pack for 3 weeks, and then take a .325 mg. aspirin after that, I guess for the rest of my life. Doc said somedays I will be great, others I may not be so great, so if I need to take my steroids, then he would call it in. I called husband at work, who is an RN on the Telemetry nurse (10 yrs...I do think he knows what he is talking about too), and he says I don't want to take the steroids for a long period of time. 3 weeks is fine, but not to continue. He says patients come in who have been on steroids their whole life have paper-thin skin and veins, and their skin is hard to heal. He says I need to get the thyroid out. After speaking with him, and speaking to the doctor, I WANT IT OUT!! I am also nursing a baby, but doctor says it's fine to take the steroids, but I am kinda leary about that. Should I wean her cold-turkey? She turns 1 yr on Feb. 2nd. She doesn't take the bottle that well, or the sippy, nor does she eat very well.

    Blood tests were done Dec. 23rd, and results are: TSH is 0.9, calcium and blood count are normal. The auto antibodies (did I type that right?) are elevated, so that is why he says I have Hashimoto's.

    I know 2 ladies who had their thyroids taken out...they are doing fine. Another lady I know has Hashimoto's as well, and she is doing poorly, as me.
    This is the 1st post I have read about treating hashis with steriods and I have to admit you have a pretty smart Dr...I was wondering how come others didnt take steriods for their hashis..Steriods supress the immune system...So thus thats what you are needing right now b/c your body is killing off your thyroid...If your lucky when you come off treatment you will still have a semi working thyroid and a big possibility you may go into remission for awhile until your immune system sees your thyroid as a threat again and tries to kill it off.As for taking your thyroid out you better think long and hard on that one b/c once you go hypo its not a walk in the park so to speak... take care

    Last edited by likeme28; 01-05-2005 at 10:45 AM.

     
    Old 01-05-2005, 10:41 AM   #6
    lucky charms
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    Re: Told today I have HASHIMOTO'S...now what?

    Quote:
    Originally Posted by Txmomma6
    I don't know why really...

    but, I just got off the phone with husband. He talk to one of his doc. friends up there at the hospital. He is an ENT doc. He said that ENT said that I won't have to have the thyroid taken out, and that the steroids will eventually kill the thyroid. He says I may only have to take it a few times after this 1st treatment, and then it should be "killed."

    Don't know all the details and all. Still looking up stuff on the net about it. I am going to tell my friend about what I am going to do. Maybe it will get her better too.
    I hate to disagree with an ent b/c im from far a dr , but steriods will not kill off your thryoid but just the antibodies thats attacking the thyroid.

     
    Old 01-05-2005, 11:05 AM   #7
    Txmomma6
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    Re: Told today I have HASHIMOTO'S...now what?

    Like I said...I'm still looking up details, and still have a hundred questions to ask my doc...

     
    Old 01-05-2005, 02:23 PM   #8
    NodiGoiterGirl
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    Re: Told today I have HASHIMOTO'S...now what?

    Your post got me interested as I had Hashimotos and had my thyroid removed because it was four times the size it should have been, and didn't shrink with levoxyl treatment.
    I am glad I had the surgery, All of my symptoms disappeard about four weeks or so afterwards, but if there had been a way to keep what I was born with I would have tried it.
    The articles I have read about steroid treatment basically say that they are tried for a while. After discontinuation of treatment the antibodies may come back or they may not. The steroids in my opinion are meant to kill the antibodies not the thyroid.
    There is another type of Hashimoto's that I was not aware of until now called Hashimoto's Encephalopathy. In this very rare disorder the antibodies attack the brain instead of the thyroid. Steroids are used to treat this also.
    It's all very interesting, I learn something new everyday!!!
    Keep us posted,
    Nodi

     
    Old 01-06-2005, 09:45 AM   #9
    Its Megan
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    Re: Told today I have HASHIMOTO'S...now what?

    ok your scaring me with the brain thing

     
    Old 01-06-2005, 11:13 AM   #10
    lucky charms
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    Re: Told today I have HASHIMOTO'S...now what?

    Quote:
    Originally Posted by Its Megan
    ok your scaring me with the brain thing
    I know whats up with the brain thing..I havent read anything on that yet... hmmm interesting

     
    Old 01-06-2005, 12:47 PM   #11
    NodiGoiterGirl
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    Re: Told today I have HASHIMOTO'S...now what?

    I'm sorry Megan,
    I didn't mean to scare anyone, or suggest they may have this disease. I did say it was very rare. But is more common with people that have thyroid Hashimoto's. The major symptoms are nervous disorder symptoms such as tremor, stroke, seizure. I think that if you had this disease you would probably know it.
    I was just comparing the treatments for the two disorders.
    Take care,
    Nodi

     
    Old 01-06-2005, 12:59 PM   #12
    Txmomma6
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    Re: Told today I have HASHIMOTO'S...now what?

    Ok, like I said I didn't know every detail yet, but I was wrong about killing the thyroid. I think what someone else said on here after me is more correct with what DH told me. So, sorry!

    But, ENT said possibly after steriods it may get better?? Again, I am sure that is what ENT/DH said, but I could be wrong again.

    All I know is that (I'm sure) my gramma had this, and was told she had Graves instead, and was in constant pain at the end of her years, and the dumb endocrinologist @ Scott & White in Temple, Tx told her she Graves. Everything I have read about Hashimoto's & Graves, and the symptoms that Gramma had...it wasn't Graves. I could be wrong on that too...

     
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