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    Old 06-24-2004, 01:29 PM   #1
    jinglebts
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    Talking midwest -- what is thyroid myopathy?

    hey there,

    won't give you 40 lashes with a wet noodle b/c i'm sure you've done that to yourself already, and no less a person than I have felt intimidated by my very own lovely GP ...

    just what is thyroid myopathy anyway? i've been unable to gain strength anywhere for the past two years, and have lost some ... my legs ache when i wake up and i pant for awhile ... and now i have occasional dizziness too ...

    i've got better for awhile, then worse and raised my dosage, better for a month then worse and raised my dosage ... on my last thyroid panel (i don't have it here, but it was about a week and a half ago), my TSH was undetectable (the last three have shown that), my fT4 was 16.7 (i have struggled to get it up from 13, and finally have), my fT3 was 8 (but i haven't had any symptoms of anxiety, or had heart palps) ...

    my endo says it's unusual that a person should get better for awhile then relapse ... he doesn't think, for this reason (better for awhile, then worse) that anything could be interfering with my meds (my anti-seizure drugs, for example) ... so he doesn't know what's wrong ... and at my last visit about 6 weeks ago, when my fT3 was 5.5 and my fT4 was 17, he said i should cut back b/c my T3 was too hi and i could have heart probs. ... i felt so awful when i cut back that i eventually (three weeks ago) resumed my usual dosage -- 200mcg ... so i hate to think what he'd think of my latest result: an fT3 of 8!!

    what do you think, about this "better for awhile then worse" thing that my endo says shouldn't and is unusual ... seems not right to me, from what i've read on the board ... seems right to me, again from what i've read on the board, that one would first feel better on, say, 50mcg, then worse, feel better on 88mcg, then worse, until finally one doesn't get worse ... am i right to think this?

    i haven't dared to increase my dosage from 200mcg, since normal thyroid output (again, from what i've read on the board) seems to be about 175, so ...

    but untreated hypo can cause osteoP (my endo says that too much synthroid can cause osteoP) ... i think i may still have osteoP, but i've been treated with actonal, so don't know, and i can't tolerate the 2:1 calcium/magnesium b/c too much magnesium gives me diarrhoea (try typing that five times fast ) ... haven't had a bone density test lately (my endo does a "rate of bone turnover" blood test, which seems just swell to me -- i have it with my other blood tests) ...

    (i take as much magnesium as i can, but certainly not in the 2:1 ratio that was recommended) ...

    so to sum up what seems to me to be a dreadfully rambling post: do you think my endo is wrong -- can one relapse, then have to increase the meds? can this relapsing be caused by a medication interfering? just what is causing me to relapse anyway? is it normal?

    am i taking too much synthroid (the osteoP thing), given that my hypo is still not controlled?

    what do you think of my fT3 -- a false reading? a real reading, but not to worry as i have no symptoms? i'm so confused!!

    and finally, to address the topic of this post: could i have thyroid myopathy, given my achiness and general inability to gain strength? it's been two years now since i think i've been hypo, and 1 year (march 2003) since i began treatment, and i've been unable to strengthen my legs (i was the one who had a personal trainer, remember ) for two years now ....

    GAH!

    jb

    ~ my sister of course, who has has hashi's and had the RAI treatment for it in april, feels perfectly fine -- guh-nash guh-nash!!
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    Old 06-24-2004, 01:55 PM   #2
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    Re: midwest -- what is thyroid myopathy?

    JB-
    Sorry I peeked on this thread. I think thyroid myopathy means disease of the thyroid muscle. I took a medical terminology class last year. I didn't know there is a thyroid muscle though, so could be wrong.

     
    Old 06-24-2004, 02:17 PM   #3
    Lostdog
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    Re: midwest -- what is thyroid myopathy?

    I believe it is the same as Hoffman's syndrome.That is what my dr. dx me as having.Very basically it is the muscle pain & fatigue, etc. caused by hypo.

     
    Old 06-24-2004, 02:23 PM   #4
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    Re: midwest -- what is thyroid myopathy?

    Here's more:Hoffman's syndrome


    Clinical features central to a myopathy associated with hypothyroidism include:

    muscular pains
    stiffness
    cramps, not necessarily associated with weakness
    slowed muscle relaxation, most clearly seen following a tendon jerk
    The delay in relaxation is not due to repetitive muscle excitation - as in myotonia - but is probably the result of a reduced rate of cross-bridge uncoupling.

    There may be frank muscle weakness in some patients, and the muscles may be firm to palpation and enlarged.

    It is a reversible type of muscular dystophy, if I understood things correctly, form other sites.

     
    Old 06-24-2004, 04:09 PM   #5
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    Talking Re: midwest -- what is thyroid myopathy?

    Quote:
    Originally Posted by Lostdog
    Here's more:Hoffman's syndrome


    Clinical features central to a myopathy associated with hypothyroidism include:

    muscular pains
    stiffness
    cramps, not necessarily associated with weakness
    slowed muscle relaxation, most clearly seen following a tendon jerk
    The delay in relaxation is not due to repetitive muscle excitation - as in myotonia - but is probably the result of a reduced rate of cross-bridge uncoupling.

    There may be frank muscle weakness in some patients, and the muscles may be firm to palpation and enlarged.

    It is a reversible type of muscular dystophy, if I understood things correctly, form other sites.
    ah ... what type of dr. DX'd you? that sounds like me, alright ...

    jb
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    Old 06-24-2004, 04:17 PM   #6
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    Talking Re: midwest -- what is thyroid myopathy?

    Quote:
    Originally Posted by Bellajoon
    JB-
    Sorry I peeked on this thread. I think thyroid myopathy means disease of the thyroid muscle. I took a medical terminology class last year. I didn't know there is a thyroid muscle though, so could be wrong.
    no bother at all -- i meant to address the subject line to "midwest -- and anyone else" but as usual, i forgot ... that said, read Lostdog's two posts -- very interesting ...

    MW1 has thyroid myopathy i her shoulder i believe, that's why i addressed it to her ... i recommended aall kinds of physio/acupuncture/massage for her, but it seems to be in my legs and body -- hence the tiredness ...

    i too looked up "myopathy" and was a bit baffled, but then assumed it was a myopathy caused by the thyroid...

    jb
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    Old 06-24-2004, 08:55 PM   #7
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    Re: midwest -- what is thyroid myopathy?

    Dear Jinglebts,
    I was dx by my primary doc(family doc).I was suffering for years with the muscle problems & was sent to many specialists.I have a rare form of migraine that causes me to have stroke-like symptoms.I have been to several neurologists & no proper dx.Finally got a neuro to dx migraine condition but he was baffled by the muscle problems & said hopefully it would go away when the migraines were under control.(no luck)Meanwhile, family doc is stumped & I was on muscle relaxers(on an on going basis), vicodin for pain,and sleeping pills to sleep.My muscles can be seen moving through my clothes and I get"charlie horses" in places I didn't know had muscles. I get them in my breasts & butt too.Painful!! Needless to say my hubbby doesn't mind rubbing them out .After finally getting dx with hypoT my doc put 2 & 2 together & realized what was going on, finally.My hubby feels resentful for the 4 yr wait,but I am just greatful to know I am NOT dying(just a lil paranoid) & not crazy.
    How did you get a dx?Are you in a lot of pain?I am having problems getting ajusted to my thyroid meds & doc took me off it for 2 days.(I am only 2 1/2 mos dx).My legs were so sore.Exercise is impossible,just getting thru a day is rough.I am hopeful now though, that it will pass as the thyroid meds help.
    Good Luck to you.

     
    Old 06-24-2004, 09:02 PM   #8
    Lostdog
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    Re: midwest -- what is thyroid myopathy?

    Here is more info I found:



    Endocrine Myopathies
    Endocrine myopathies are caused by underlying conditions caused by the over- or underproduction of hormones. These conditions can develop in children and adults and usually respond well to treatment.


    Hyperthyroid myopathy is caused by the thyroid gland producing too much thyroxine. Its symptoms include weakening and wasting of the muscles, especially in the shoulders and hips, and sometimes the eyes.

    Hypothyroid myopathy is caused by the underproduction of thyroxine and results in muscle weakening in the legs and arms. The muscles may become enlarged.

     
    Old 06-24-2004, 09:19 PM   #9
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    Talking Re: midwest -- what is thyroid myopathy?

    Quote:
    Originally Posted by Lostdog
    Dear Jinglebts,
    I was dx by my primary doc(family doc).I was suffering for years with the muscle problems & was sent to many specialists.I have a rare form of migraine that causes me to have stroke-like symptoms.I have been to several neurologists & no proper dx.Finally got a neuro to dx migraine condition but he was baffled by the muscle problems & said hopefully it would go away when the migraines were under control.(no luck)Meanwhile, family doc is stumped & I was on muscle relaxers(on an on going basis), vicodin for pain,and sleeping pills to sleep.My muscles can be seen moving through my clothes and I get"charlie horses" in places I didn't know had muscles. I get them in my breasts & butt too.Painful!! Needless to say my hubbby doesn't mind rubbing them out .After finally getting dx with hypoT my doc put 2 & 2 together & realized what was going on, finally.My hubby feels resentful for the 4 yr wait,but I am just greatful to know I am NOT dying(just a lil paranoid) & not crazy.
    How did you get a dx?Are you in a lot of pain?I am having problems getting ajusted to my thyroid meds & doc took me off it for 2 days.(I am only 2 1/2 mos dx).My legs were so sore.Exercise is impossible,just getting thru a day is rough.I am hopeful now though, that it will pass as the thyroid meds help.
    Good Luck to you.
    i'll explain my iilnesses later (really complicated), but a question: do you have a brain lesion, or just seizures? i have a brain lesion that is not a stroke or tumour, and i've had it for seven years ... no DX for that either and that's been seven years!!

    jb
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    Old 06-25-2004, 06:20 AM   #10
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    Re: midwest -- what is thyroid myopathy?

    I wasn't ignoring you, JB. I snagged last-minute tickets to the Cards/Cubs game last night, so I was otherwise occupied. (Cards won... yay!)

    A myopathy, simply, is any abnormal state of striated muscle. ("Striated" = voluntary, skeletal muscles, as opposed to involuntary, smooth muscles.) Clinically, the patient generally experiences muscle weakness, pain, cramps, muscle tenderness, and spasms in various degrees. Lostdog explained the two types of thyroid myopathy the way I would have. I can't seem to find any definitive info about whether the myopathy can ever be permanent... Whether treating the hypo can sometimes let the myopathy go unrelieved... That's what I fear.
    Quote:
    what do you think, about this "better for awhile then worse" thing that my endo says shouldn't and is unusual ... seems not right to me, from what i've read on the board ... seems right to me, again from what i've read on the board, that one would first feel better on, say, 50mcg, then worse, feel better on 88mcg, then worse, until finally one doesn't get worse ... am i right to think this?
    Your endo ought to talk to me. If you're wrong to think it, then I'm wrong too. That seems to be the exact pattern I'm slogging through. I get better after a week on the higher dose; then get worse again after about five weeks. Always worse again by the time of the check-up. Problem is that the latest check-up, he wouldn't increase it, and I'm crestfallen.

    Sorry, I can't help you with your dosage questions, JB. That's all too complicated for my meager brain to figure out.

    Last edited by midwest1; 06-25-2004 at 06:22 AM.

     
    Old 06-25-2004, 07:53 AM   #11
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    Re: midwest -- what is thyroid myopathy?

    Dear Jinglebts,
    My syptoms involve blacking out(drop attacks),inability to walk & talk.When I can speak it is very slurred(my hubby has learned to somewhat understand me).I have delusions,altered conciousness & sometimes seizures.There are alot more syptoms:vertigo,double vision,tinnitus, etc.They tell me it is caused by a lack of blood flow to the brain stem. I do not have any brain lesions.Neuros can be frustrating.I hope you get a dx soon.My dx is very hard to treat, about 50% of sufferers get some relief with diff meds.I have had no luck.But just having an answer is nice,sometimes.Good Luck I hope you find some answers soon.

    Dear Midwest,
    From what I understand, this myopathy is reversible, BUT that is no guarantee.I believe the longer you have it theres more of chance of it not being totally relieved.Are you seeing any improvement ?

     
    Old 06-25-2004, 08:43 AM   #12
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    Re: midwest -- what is thyroid myopathy?

    Quote:
    Originally Posted by Lostdog
    Dear Midwest,
    From what I understand, this myopathy is reversible, BUT that is no guarantee.I believe the longer you have it theres more of chance of it not being totally relieved.Are you seeing any improvement ?
    No, it isn't much better. In Feb '03, my TSH was 4.83. I'd had upper back, neck, and shoulder stiffness for years before that. It wasn't until April '03, when TSH was up to 6.98 that it began to 'spread' and get worse. My upper and lower arms were then affected, and my feet and shins began to cramp at night. Went on Synthroid, the pain got worse, but that might be because the synth sent me hyper. Went off the synth, pain got a little better. Went on the Armour one month after going off synth. Since then, there have been maybe 3 days total when I had no discernible muscle pain. Most days, it ranges from slightly better to simply awful, but it's always there.
    The fact that the neck and shoulder pain has been there since at least 1987 is very worrisome... That would fall under the "the longer you have it" theory, so I fear it may not improve. arghhh

     
    Old 06-25-2004, 10:07 AM   #13
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    Re: midwest -- what is thyroid myopathy?

    Midwest, I'm pretty sure I read somewhere that the longer you have it, the longer it takes to get over it. I think it'll probably improve, especially since you've noticed changes in it with thyroid replacement.

     
    Old 06-25-2004, 01:26 PM   #14
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    Unhappy Re: midwest -- what is thyroid myopathy?

    Quote:
    Originally Posted by midwest1
    No, it isn't much better. In Feb '03, my TSH was 4.83. I'd had upper back, neck, and shoulder stiffness for years before that. It wasn't until April '03, when TSH was up to 6.98 that it began to 'spread' and get worse. My upper and lower arms were then affected, and my feet and shins began to cramp at night. Went on Synthroid, the pain got worse, but that might be because the synth sent me hyper. Went off the synth, pain got a little better. Went on the Armour one month after going off synth. Since then, there have been maybe 3 days total when I had no discernible muscle pain. Most days, it ranges from slightly better to simply awful, but it's always there.
    The fact that the neck and shoulder pain has been there since at least 1987 is very worrisome... That would fall under the "the longer you have it" theory, so I fear it may not improve. arghhh
    oh faugh midwest, i sure hope something can be done about it ... does it feel anything like Fibro? (i don't have fibro -- i've had cfs for a long time -- 1987 -- but not fibro, so don't know what it feels like) ...

    i've taken your implication from my other post (worse, then better -- NOT!!) and concluded that my endo is a fool, so am trying to get the name of the naturopath that i so conveniently lost ... i had 1 week last may of feeling well -- no bloating, no depression, no fatigue, i awoke to hear the birds singing, and that's pretty much it ... the odd time of just two symptoms, but not for the past couple of months -- faugh as well...

    TTFN
    jb
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    Old 06-25-2004, 09:25 PM   #15
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    Talking Re: midwest -- what is thyroid myopathy?

    Quote:
    Originally Posted by Lostdog
    Dear Jinglebts,
    My syptoms involve blacking out(drop attacks),inability to walk & talk.When I can speak it is very slurred(my hubby has learned to somewhat understand me).I have delusions,altered conciousness & sometimes seizures.There are alot more syptoms:vertigo,double vision,tinnitus, etc.They tell me it is caused by a lack of blood flow to the brain stem. I do not have any brain lesions.Neuros can be frustrating.I hope you get a dx soon.My dx is very hard to treat, about 50% of sufferers get some relief with diff meds.I have had no luck.But just having an answer is nice,sometimes.Good Luck I hope you find some answers soon.
    my symptoms are not quite like that -- no blacking out, no inability to walk/talk, delusions ...

    what are they doing for it?

    jb
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    Last edited by jinglebts; 06-25-2004 at 09:26 PM.

     
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