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    Old 11-04-2005, 07:01 PM   #1
    coolbunny
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    Question Hashi's and muscle pain ?

    Hi All

    Does anyone here with Hashi's, suffer from quite severe muscle pain at various sites round the body.....especially in the back, shoulders, neck, diaphragm, legs, elbows ?

    I have been told these pains are symptomatic of Hashi's, but to me they seem more appropriate to a dx of fibromyalgia.

    peterson

    Last edited by Administrator; 11-22-2005 at 12:28 AM.

     
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    Old 11-04-2005, 09:51 PM   #2
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    Smile Re: Hashi's and muscle pain ?

    peterson --

    I'm surprised there's no replies here yet. (..oh, maybe your message hasn't been here very long). Well, count me in on muscle pain, big time, okay? I think the muscle pain has been thee worst thing I've been through with my hypo, besides shortness of breath, and a few other too personal things to mention here. Oh gosh...it's all hell no matter what we suffer with, if it's severe enough, I guess.
    I did have a severe problem with muscle spasms of the upper back, between my shoulder blades. Awful that it moved around to the front, and yes, the diaphragm too, that also would even spasm, feel stiff, (numb too) and cause me to feel short of breath too. (When this was going on, it was way too painful to even wear a bra). Also was told I had chostochondritis....omgosh..so painful.

    At one time, I was even having them in my upper chest muscles! It was SO painful....and very scary! The problem was that I was so undertreated. It started when I was on Armour, and I just couldn't raise it up high enough, to get my T4 levels up, without getting way too much T3. It seemed like the high T3 caused it, as every time I raised it, it got more severe, (the spasms), but I really don't know for sure. I also have had some neck stiffness, and tenderness in muscles right below my neck, and tons of eye twitches...don't know why, but mostly just my left eye! (??) And a few toe cramps, and a few charley horses in my calves ...but that was nothing compared to the other stuff.

    I eventually got back on T4 only treatment, and it seemed once we got that T4 up, and TSH down to 1.2, I started feeling SOO much better. The spasms are pretty much gone now. Every now and then, I feel a little twinge. Now I'm working on getting my abdominal muscles stregthened up, (I just purchased a new ab exerciser today), as I think they became pretty weak from inactvity during that awful time.
    Muscle relaxants helped some too while this long ordeal was going on. (over a year!)
    Good luck....
    Deda

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    Old 11-04-2005, 11:12 PM   #3
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    Re: Hashi's and muscle pain ?

    The answer is that it can be either. In my case, I had severe muscle and joint pain almost everywhere, but moving around the body and asymetrical. To the point where I sometimes couldn't walk, hold up a newspaper or telephone etc. The rheumatologist (!) I went to see said his first pick was thyroid (based on my MCV result and other physical symptoms, not any of the thyroid results which were 'normal') - his second pick was fibromyalgia.

    We trialed the thyroid treatment, and lo and behold within two weeks the pain and inflamation started going. Within a few more weeks I was practically at no pain. Second opinions from Endo and doctor were that it was definitely NOT thyroid and I was experiencing a placebo reaction. Two years later, my doctor conceded that I did indeed have a thyroid problem. Grrrr

    Anyway, my point is, do not discount thyroid as a possible cause of that pain - it was in my case and I was extremely lucky to have it diagnosed so accurately.

     
    Old 11-04-2005, 11:26 PM   #4
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    Re: Hashi's and muscle pain ?

    peterson....

    I have read that some of the top thyroid/fibro docs, (Dr. Lowe is one), are of the opinion that Fibromyalgia is in fact just undertreated or undiagnosed hypothyroid. I know that was the case with one of my best girlfriends' 72 year old mother. She was dx'd with fibro, and suffered for years, and then finally last year, they dx'd her with hypo/Hashi's, and she is doing much better, altho not perfectly well, of course. I kept telling my friend all along that I would bet money that her mom had hypo, as my friend has hashi's/hypo, and her brother has Grave's. Probably one of those common misdiagnoses, (like so many of us), as her TSH probably always fell into that stupid, "normal range". UGHHHHHHHHH!!

    Deda

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    Old 11-05-2005, 05:41 AM   #5
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    Re: Hashi's and muscle pain ?

    wow, I never thought to link it. I am hypo with Hashis too. I've been getting aches and spasms through shoulders, back and diaphram. I was worried it was heart related! (my TSH last test was way off too, 22 out of a .5-5.00 range). My synthroid was bumped up at that time, but I'm betting we'll be bumping it up again in a month or so. I am so glad you asked this question.

    Last edited by Kharma; 11-05-2005 at 05:42 AM.

     
    Old 11-05-2005, 06:51 AM   #6
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    Re: Hashi's and muscle pain ?

    Kharma..............oh, with a tsh of 22 no wonder you have pains.

    I too have hashi's and here is a clear indication of the pains being related............I was so crippled up with pains and aches I thought I had some terrible disease.................I ended up having my thyroid out 3 months ago and ALL of my aches and pains are now gone..............all of them. It is that nasty hashi's that causes all of the pains and inflammation in your joints and muscles.

    Everyone is right.............so many are told they have fibro when in fact they have hashi;'s or are undertreated for hypo.

    Keep us posted,
    karen

     
    Old 11-05-2005, 09:42 AM   #7
    coolbunny
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    Re: Hashi's and muscle pain ?

    Thank you everyone for your helpful replies - I feel more reassured that my pains are probably related to the Hashi's than a separate cause, e.g. fibromyalgia.

    Reading some posts over on the Fibromyalgia boards makes me wonder if some of those poor folk have undx'd thyroid problems.....even though their TD function tests are coming back normal in many cases...

    peterson

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    Old 11-05-2005, 11:00 AM   #8
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    Smile Re: Hashi's and muscle pain ?

    Quote:
    Originally Posted by kant
    Kharma..............oh, with a tsh of 22 no wonder you have pains.

    I too have hashi's and here is a clear indication of the pains being related............I was so crippled up with pains and aches I thought I had some terrible disease.................I ended up having my thyroid out 3 months ago and ALL of my aches and pains are now gone..............all of them. It is that nasty hashi's that causes all of the pains and inflammation in your joints and muscles.

    Everyone is right.............so many are told they have fibro when in fact they have hashi;'s or are undertreated for hypo.

    Keep us posted,
    karen


    Hey Kant...

    I'm just so curious if you had high antibodies, and did they come way down after your surgery? I'm happy for you that you are feeling so well now. I have seen a lot of posts on different thyroid boards, where people say the same thing as you, that once it was out, the pains went away, and they lost weight, and other great things. My antibodies just won't go down. They are exactly the same as they were 2 years ago...really high. (Altho I feel much better now, but far from feeling like I used to)

    So did you have em checked before and after your surgery...and what was the result?

    Thank you!
    Deda

     
    Old 11-05-2005, 12:56 PM   #9
    merrillin
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    Re: Hashi's and muscle pain ?

    Deda,
    I did have high antibodies before the surgery....in fact that is the only lab test that was off. I also had 2 nodules on my thyroid.

    I just had my antibodies tested..............my anti-thyroglobulin antibodies were down from 191 to only .8, I have never had high TPO's.

    Did you have your thyroid out?

    Which antibodies do you have? The TPO's are produced by the body itself and there is really no way to get those down............sometimes they do fall after a TT and the supplement selenium has been shown to help destroy them.

    Anti-thyrobglobulin antibodies are made in the thyroid itself so once the thyroid is out those antibodies usually go way, way down.

    I had mine checked 12 weeks post op.

    Karen

     
    Old 11-05-2005, 01:46 PM   #10
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    Re: Hashi's and muscle pain ?

    kant...

    That's awesome, girl! Yes, I still DO have my thyroid gland. I had an ultra sound last January. (military base hospital) All this endo told me was, (he seemed to be evasive when I questioned him about it) he said, "well, your thyroid gland is,... well basically, you have nodules all over your thyroid gland. These ultra sounds are really worthless". Then he went on to say, something about they were "homogenous?", nothing to worry about...and then changed the subject really quick. I asked for a copy, he said they couldn't do that,... that he agreed with me, that we should be able to have a copy, but they are the property of the US Government, or US Air Force, or some BS like that. (My girlfriend is an RN in the Navy, and told me that I CAN get them, just to go down to the records dept. and get a copy. I don't think it's that easy tho...but I really haven't tried)

    Anyway, you can see my gland when I tip my head backwards and swallow, BUT it doesn't look large or anything. But you CAN see it. I tried the same test on my hubby, and you can't see his, or feel his either! (It almost felt like he doesn't have one!)

    I don't really have throat problems, not real bad anyway. Every now and then, I'll swallow a pill or a vitamin, and it feels "stuck". Last night, I was sitting here eating an apple, and it felt like a piece was stuck in there, it just wouldn't go down. I had to gulp down big gulps of water to get it down! And every now and then, it seems like I kind of choke on my own spit. (Sound familiar?) But nothing bad...these episodes are infrequent.

    Here's my antibody levels....

    AG's were >3OOO norm is <40
    TPO's were > 1OOO norm is <35

    I have had them tested 3 times in 2 years, and they always come out exactly the same. Have had them tested at 2 different labs too, so they must be pretty accurate, as they were exact. Bummer...
    I just would like to see them go down. They make me nervous. 2 different endo's have said they will go down,... someday. (WHEN???) I have seen other people's posts that said their's did go down...but come on...how many years can that be? Yes, I do take Selenium, and have been for 2 years.
    That is amazing how yours went down! How wonderful! I have just read so many posts of people that had it taken out, and so many of you say the same thing, that all pains went away, and weight came off too. (I don't have a big weight prob tho, only about 8 lbs now) How weird that your thyroid levels were normal too! Did you have a lot of bad pain?
    Sorry for all the qustions...I'm just curious. These antibodies are sure taking long to kill off this gland. I'm on 125 mcg's Levothroid. Sure seems it would be easier to just take the dang thing out!

    Thanks kant!
    Deda

     
    Old 11-05-2005, 04:35 PM   #11
    merrillin
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    Re: Hashi's and muscle pain ?

    Deda..........
    I had severe symptoms with hashi's. I lost 60 pounds, I was so tired I could not move without pain, my feet, ankles, knees any joint just ached with pain. My muscles always felt like they burned, I always felt like I was coming down with the flu and had terrible ear and jaw pain. You name it, I pretty much had it.................

    I don't know of antibodies just spontaneously going away, especially if you have nodules and antibodies. Your thyroid is being attacked daily. You should be having repeat ultrasounds and a biopsy based on the results. If you have nodules and they have not improved after being on meds you really need to get them biopsied if they are around 2cm. Everyone has the right to a copy of their records, it is the law. Don't ever let a dr tell you the results of ANYTHING and take their word, so many of us would be in quite a bit of health trouble if we had done that. You have got to see what your results say, especially considering nodules. What if you had a cancerous nodule, but because you are not provided a copy of your results you do not even know what kind of nodule you have and you also do not know if they need to be biopsied. I would not let a dr, military or not play with my life like that.

    Best of luck,
    Karen

     
    Old 11-05-2005, 07:51 PM   #12
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    Smile Re: Hashi's and muscle pain ?

    Thanks Karen...

    Yes, I know the law states we have a right to all of our records, and so forth, but the military is just different, they make their own laws, they're almost like a sovereign nation, or something. It's like you can't go in there and tell them that you have a "right" to anything!! It's like it's such a big "priviledge" to even go there, even tho we now pay for it, and when he enlisted, it was promised to be FREE- -FOR-EVER!!!!! (but it is cheap) HA! That's what he got for his 25 years! LOL That's what I don't like about going there, not getting our lab reports!

    He did say that those nodules "were not of a size to be concerned with", and "we'll keep an eye on em". Whenever he would phone me to tell me that I needed another increase, I would ask my levels, and the only one he would remember would be my TSH, (as that's the only one that seems to matter to most of theses Dr's) Other than that tho, he was good in some ways...he did believe that our TSH should be around a 1, and was open to trying T3, (mostly Cytomel). He told me that if I didn't get better on the Levothroid alone, then we could try adding Cytomel. So that did give me some hope, ya know? (So many docs are so against that big bad ol T3!) But now I'm going to my GP at my other HMO, and so far, so good. This T4 seems to be working okay, and my Ft3 levels are very good, too. I will ask her if I can get an ultra sound there. She's pretty good at going along with my requests for various tests, as I had been so sick. And one great thing with this place, they send you a copy of all your labs and tests, asap!

    Thank you for telling me these details about yourself, and I will keep an open mind about possible surgery IF things ever get really bad again. One thing about the AF hospital, the GP I saw there said, "why don't I just get it taken out?" I heard they will do that over there too. I'm sure they would even at the HMO I'm with now, if there was a good reason, like nodules causing problems, etc.

    Thanks again, Karen!
    Deda

     
    Old 11-09-2005, 08:33 PM   #13
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    Re: Hashi's and muscle pain ?

    That was my primary symptom. Since treatment I only have pain when I flare-up the week before and week of my period. (flaring now ).

    Love and Prayers, Kelly

     
    Old 11-12-2005, 10:02 AM   #14
    Demi1234
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    Re: Hashi's and muscle pain ?

    Demi
    I noticed the muscle pain in my neck and shoulder have been worse since my diog 4 weeks ago.

     
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