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    Old 04-04-2005, 02:22 PM   #1
    suem
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    Questions ? need opinions about hashi's

    I have been reading a post here that said people with Hashi's will eventually have their thyroid gland die. If that is true then does anyone know the percentage of people this happens too. Also does that means that as you age
    you may need more med? Once stabalized how often should a person have their thyroid levels checked? you sure dont want huge surprises like a terrible level after being ok and thinking your fine and then its harder to control.
    suem

     
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    Old 04-04-2005, 03:46 PM   #2
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    Re: Questions ? need opinions about hashi's

    Hi sue,

    Because Hashi's is auto-immune, as you know it is attacking your thyroid killing off your normal cells. My surgeon explained to me what happens is, that your thyroid gets attacked, and at times will be worse than others, and swelling will occur. As well as the swelling, your body will try to compensate for the dying/dead thyroid tissue and regenerates, hence the growth of a person's thyroid gland.

    I was also told that for me, they left in 2 small pieces of my gland, half the size of a thumbnail, that these pieces can either grow as a result of the continuing attack, or die off. He said most likely with mine, they will eventually die off because of the very very high level of antibodies I had/have.

    I have been on thyroid meds for 5 weeks now and am down to getting my bloodwork done once a week. I get it done this often because of my low calcium levels so I am not sure how often they would check the thyroid levels if I didn't have this problem. My thyroid levels have been steadily coming into normal range, and I think I'm doing ok in that regard, and I have the same question as you as to how long and often a person needs to be checked. One dr. told me that it takes a good 6 months at least to get your levels normalized after surgery. I think that if you have Hashi's and keep your thyroid in, you may have more problems keeping on top of the normal levels you should have--in my case I have almost no thyroid so this has been the easy part!!

     
    Old 04-04-2005, 05:56 PM   #3
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    Re: Questions ? need opinions about hashi's

    Once your Thyroid is removed (mine is not yet unfortunately) and you stabilize, you should probably get tested every 6 months typically. I know many people tend to stabilize and forget about getting tested for years, which might be good as long as you become aware of symptoms and get tested as symptoms present. For me, I've had diagnosed hashi's and Graves' for about 2 years now and due to my fluctuating levels, have never been on meds. My TSH goes from about 15.8 to 6.4 normally but my Free's have been good throughout until recently where they are very low normal. Before the last couple of months, my frees have always been right at the top of the normal range or slightly above the normal range, indicating that my thyroid is finally starting to die off on its own....but its been a VERY long 2 years.

    I am now of the opinion that if you've got a wicked case of Hashi's or Graves' its almost better to speed up the inevitable and just kill that sucker off with RAI or surgery and control yourself with meds. For me, I've lost a good 2 years with my newborn that I'll never get back and I hate that. I've been this close to checking into a mental institution as a result when I've always been otherwise pretty sane - its hell and there's really no reason to put yourself through that if the end result will ultimately be the same.

     
    Old 04-05-2005, 06:21 AM   #4
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    Re: Questions ? need opinions about hashi's

    Quote:
    Originally Posted by nastyhashi
    Before the last couple of months, my frees have always been right at the top of the normal range or slightly above the normal range
    Nasty, what did that feel like? Were you at all hyper? Do you notice a big difference between now and then?
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    Old 04-05-2005, 10:07 AM   #5
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    Re: Questions ? need opinions about hashi's

    Im not sure how to answer that exactly....I might just be crazy at this point for all I know. I suffer tons of symptoms all the time but the worst seems to be hyper for me. The problem is that I've had a long history with panic attacks but no one knows if its the Graves' or actually just anxiety disorder. I am very thankful now that my thyroid has crapped out a little that the really bad hyper periods are not as bad as they've been in the past, for instance, last August I went to the ER with heart rate of 155 and blood pressure of 170/115, which is pretty scary. Lately, "the worst" attacks raise me to around 105 beats per minute and slightly elevate my pressure.

    After those horrific attacks last year, it seems trembling with 105 BPM pulse is a walk in the park now in comparison. The worst now is the residual "thyrotoxicity" where during and after a bout of this hyper period, which usually lasts bewtween 5 and 12 days, Im left with really, really weak legs and just feel like my muscle wasted away during that time. Then I tend to turn hypo and rebuild my muscle as best I can and the weakness goes away and I feel pretty good - this phase usually lasts about 8 - 20 days and then its back to hyper....If you can imagine a big sine curve (wave up and down on a bar graph) that's what I would be like....I go normal (baseline) then hypo (low) then normal baseline again) then hyper (above) then normal (back to baseline again on its way down to hypo land) etc...over and over again.

    And finally to answer your question, yes, I notice a big difference now that I assume a good deal of my thyroid is burnt out....I can now handle the hyper episodes a little better. They're still scary and I still feel like crap, but can tolerate it for now. At this point from all the crap I've been through I have an enormous pain threshold and my propensity to deal with hyper episodes has been greatly increased.

    After all, what's a measly 105 beats per minute now when my heart's been blasting at 130 - 160 at times? It's sort of a "that which does not kill me (yet) makes me stronger" sort of thing.

     
    Old 04-05-2005, 10:25 AM   #6
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    Re: Questions ? need opinions about hashi's

    NastyHashi
    I had to reply to your post. We sound alot alike except for I'm on meds. I've had the disease since 1988. I do think I spent many many years back then cycling back and forth up until 88 when I landed in the Hospital so sick. I was both Hyper and Hypo at the smae time. Then I finally went Hypo big time and was placed on meds. It took about 2 years and then another year or so to balance out. Things were great until about 2002. Been on the rollar coaster. On meds off meds. Did the ER thing with a heart rate of 148 BP was way up. Things are getting better or maybe I can just tolerate the swings more. Been back on meds for a while but taking very slow steps with it. My antibodies have come down and that helps alot. I know soon balance will come and things are then good. I had many years of feeling good and no one had any idea I took a pill everyday. Its all an individual response too.

     
    Old 04-05-2005, 11:33 AM   #7
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    Re: Questions ? need opinions about hashi's

    Thanks for the thoughtful reply, Nasty. I appreciate it.

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    Old 04-05-2005, 12:02 PM   #8
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    Re: Questions ? need opinions about hashi's

    No problem. Ellyn, what ultimately was your diagnosis? I have high TPO &Thyroglbn anitibodies and also have elevated TSI. In addition, my TSH is uaually around 14 which is high but my Free's have always been normal. The biggest kick in the pants for me is that out of like 150 thyroid blood tests, I never once posted truly hyper results. For one or two tests about a year ago, my Free and total T3 was barely outside the range high but my T4 was still perfect - I have no clinical evidence of hyper - ever so docs write me off as anxiety but I've also got the Graves' antibodies.

    My thyroid tends to flare up and cause pain and then deflate and Im fine for a few days. Why have you not just nuked your thyroid at this point of have it removed? Sometimes I wish I just had it taken out and it would be all over with but then I go through a good streak of like 10 days of being almost perfectly normal and wonder "why the hell would I rip out a perfectly good thyroid?" and then the cycle repeats and I regret not ripping it out again. Emotional roller coaster for sure.....this thing is absolutely brutal. I just want my broken thyroid to be better or get more than a 9 day repreive from this crap....a nice little 4 month vacation from Hashi's would be perfect....let my adrenals heal up, my muscles come back, my nerves to calm down....Im fairly certain at this point, although I don't know what the outcome would be, that I would have wished I had my thyroid removed sooner...I lost a lot of time with my son, work, social life.

    Last edited by nastyhashi; 04-05-2005 at 12:06 PM.

     
    Old 04-05-2005, 07:07 PM   #9
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    Re: Questions ? need opinions about hashi's

    Nastyhashi
    I love your name because it describes this so well. My diagnosis is Hashimotos. I looked through some old blood work and I do not see any test run for graves. All were for hashi. I also had a biopsy done on a nodule and through that I also was told I had Hashi's big time.

    I can remember way back in 88 I was so sick I was throwing up, had the runs, lost weight was shaking like crazy,exhasuted,hot and cold, crying all the time, had terrible anxiety and the list went on. They checked everything. Back then Thyroid was not even a thought. But a doc they brought in for second opinions suggested it because he thought I exhibited symptoms of it. The tests came back normal. About two weeks later they checked it again and my TSH went to 95.
    In the last two years I have been on and off meds due to Hyper spells but the tests never showed anything hyper per say. My FT3 had been in the upper range of normal and my T3 was over range showing Hyper. Nothing much was said about that. I dont think they had an explanation for it. My TSH has been as low as .26 and as high 108.
    Since 88 I have been on meds up until 2002 when things went nuts. My TSH would bounce from week to week sending me into a crashing mess. I tried Armour but things got worse. My antibodies went to 3500. I had many ER visits with rapid heart rate and pure exhaustion. Been to many different docs and clinics.

    Removal and or RAI is not for me. Both a personal choice.
    I'm trying to get to the bottom of what is causing this upset. Something must have triggered the flare up .

    I too have that pain during a flare up. Seems to always be on my right side and its like a sharp annoying pain. Then I get the fullness feeling and I know its going to be a terrible day. Mine last for about a week or so. I had a bad weekend but I made the best of it. My TSH is at 10 now. Thats better then 40 which it was in Jan.

    My adrenals are very tired along with my muslces too. They ache and are stiff. My nerves are in overtime especially when we go out. Or should I say when I try to go out. I too have lost alot of time with family,friends and myself. But I'm staying positive. I make the most of the good days.

    Are you planning to remove your gland?
    I was told that my grandfather had Graves!! Do I even want to find out if I have those antibodies. Yikes

    Last edited by Ellyn; 04-05-2005 at 07:20 PM.

     
    Old 04-06-2005, 06:15 AM   #10
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    Re: Questions ? need opinions about hashi's

    You know, I always suspected Graves' but no one was willing to test. It was not until I visited one of the "top docs" mentioned on these boards that Graves' started coming into the equation and sure enough, my TSI was 170 and 180 on the last 2 tests, which is high, but not insanely high. My hashi's AB's are through the roof however.

    How hysterical would it be if we were able to get back to back doctor appointments and just blow the poor doctors mind?

    It sounds like whatever this is we have the same thing....you sound a lot like me. I was told by a prominent person in Graves' research that she thought it was in fact both, Graves' and Hashi's and she called it Hashitoxicosis.

    As it was explained to me, the Graves' antibodies mimic TSH, but at the same time Hashi's pushes your TSH way up. In effect, Graves' is shooting your TSH down and Hashi's is shooting your TSH up and the result is a wildly fluctuating, mainly hypo TSH score and due to the push pull nature, blood work comes up nearly normal most of the time but the constant changes in levels is what gives us all those crummy symptoms, in addition to which antibody of the day is floating around at the highest levels. When the hashi's is low and the graves Ab's are high, we feel hyper. When the graves ab's subside and the hashi's ab's take over, we go hypo.

     
    Old 04-06-2005, 07:56 AM   #11
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    Re: Questions ? need opinions about hashi's

    Nastyhashi
    Thanks for the chuckle. I loved your antibodies paragraph. I started to picture a bunch of antibodies lined up at the begining of the day waiting for orders.

    Back in 88 when my TSH level came up 95 they then ran the Antibody tests. I about freaked when they said you have Hashimoto's disease. I still remember them saying your antibodies are 1,500. They gave me Synthroid and sent me on my way. I complained about the strange vibrations throughout my body. I had such chest fullness and Palps so I had Heart test run. I was always in a brain fog and cried on demand. Just so tired yet wired. It was like I would have a spill of excess hormone.

    At least you have been given an explanation. My TSh went to 40 but my Ft3 sat at the top end range. At one point my Ft4 was in the middle range. No pittuitary problem was found either. When I went on the roller coaster ride I went to a new Endo who did blood and everything was in range but not my confort zone and the antibodies then were 1500. He said your fine but asked are your hands always that cold!!! Needless to say I left.

    I asked the folks for more Info on my Grandpa and they gave him RAI for his Graves. I remember him as a very thin man and always busy.

    Hey maybe we should start a new thread. I feel like I butted in here.

     
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