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  • why are my symptoms so bad?

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    Old 06-15-2013, 12:19 PM   #1
    steve790
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    why are my symptoms so bad?

    I was diagnosed in January with what I was told was mild hypothyroidism.
    I do have a pretty good size mutinodular goiter also.
    Before I was diagnosed I had suffered with very severe symptoms which just progressively got worse for over a year and a half.
    I have no insurance and was working in the construction field not making enough to get my own insurance either.
    The symptoms got so bad I could no longer work.
    I eventually found a low cost clinic which made the diagnosis.
    TSH is the only test they ordered which was 9.53 . I was given levothyroxine
    88mcg
    After 8 weeks TSH checked again went down to 7.95.
    Dose increase to 100mcg.
    Two weeks later started getting dizzy and had labored breathing.
    Let it go for three weeks but it just started getting worse.
    So I stopped taking the medication for 4 or five days with no difference.
    Started taking the meds again and within a few days I had to go to the local ER. I thought I was having a stroke.
    They gave me many tests to see if the goiter was pressing against my wind pipe which they found out it wasn’t.
    I was told everything was Ok that the problem is my hypothyroidism.
    Also my TSH which was the only test given also was now 33.5 .
    I just don't understand and got no answers from the hospital to why my symptoms are so severe.
    I am no wimp and have worked in the construction field for more than 30 years mostly as a laborer which is a very tough job and painful to the body.
    But this thyroid thing is just kicking my butt.
    The tingling and numbness is tolerable but the extreme and I mean extreme body and joint pain is unbearable. I sometimes can barely walk.
    And no aspirin or over the counter pain relievers work.
    I still have the dizziness but not as bad. I still get the labored breathing which I think is from being weak and from lack of sleep.
    I haven't slept more than a few hours a night for almost a year now.
    The pain and discomfort plus the anxiety and worry just won't let me sleep.
    If I do doze off then I'm soon wakened from pain where ever my body touches the bed.
    Trying to sleep is worse now because I am going to owe this hospital a small fortune that I do not have and can not pay.
    I can not work; have no money; and now live with my retired 85 year old Dad who is helping me pay for these clinic visits, blood work and medication.
    More reasons for more stress and no sleep.
    I went back to the clinic which is in the same hospital I went to and they just upped my thyroid med's to 125mcg.
    They also gave me something to help me sleep which does not work.

    I am going to try and re apply for Medicaid again.
    The first time they turned me down for having too many assets.
    I now have no assets. But I'm sure they will find another reason to turn me down. They just don't give 51 year old single men with no childred Medicaid but it's worth a try.

    My question is, Has anyone here experienced such severe symptoms?
    Most of the symptoms I've read about are the typical ones - weight gain, tiredness and so on. The only typical one I have is hair loss and it is only on my legs. I actually read about people having TSH numbers into the hundreds with little or no symptoms at all.
    I still don't understand what is happening to me and why I haven't already felt at least some relief from these horrible symptoms taking this medication.
    My 85 year old Dad will not be able to support me for the rest of my life . I need to be able to work again. I need for at least some of these severe symptoms to go away so I can get my life back on track.

     
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    Old 06-17-2013, 09:31 AM   #2
    midwest1
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    Re: why are my symptoms so bad?

    TSH as high as yours usually signals more than "mild" hypothyroidism. Healthy people have TSH around 1 or 1.5. But much more important is the free T4 level. Has yours ever been checked? FT4 below lab median can cause significant symptoms. FT4 at the bottom of its "normal" range is almost never "normal" and could debilitate some people.

    The onset of treatment can actually cause symptoms to worsen or new ones to appear. The dose should be started low and gradually increased at 6-8 week increments. If you were given a high dose to start with (more than 50 mcgs), that can make symptoms dreadfully worse. The adrenal system can't handle higher doses than that at one time, so they balk and cause havoc along with the hypoT.

    The "medication" isn't really a drug that alters body chemistry. It's a supplemental hormone, the same kind that your thyroid gland would be making if it could. There are no side effects except in an inoptimal dose. You can probably blame your symptoms on a hormone imbalance caused by - in your case - a too-small dose... Or by the flux of hormone that happens when trying to adjust the dose properly.

    The only way to know what's going on with you is to check your free T4 and free T3 levels. If these aren't yet at least at lab median, they're likely too low, meaning that your dose is too low. Checking TSH alone is never enough. Nothing can be gleaned from just that one test. It is NOT the most important level, even though med students are taught that it is. Always obtain TSH and free T4, at least. FT3 is more optional, but still useful if you can get it.

    It takes time to feel one's old self after starting treatment. Your smartest plan would be to educate yourself to know whether your doctor's plan is the best one for you. Not all MDs are very adept at adjusting doses to fit the patient instead of the lab report. If you have a public library near you, check out the book titled Thyroid for Dummies. If they don't have it, ask them to purchase it for their collection. (They probably will.) It will explain in easy-to-understand language what's happening to you and how to best achieve the right treatment.

    I wish you well. My husband did physical work before retirement. I know very well the challenges you go through even when you feel well and how much worse work can be when you don't. Hang in there.
    __________________
    "We can complain because rose bushes have thorns, or rejoice because thorn bushes have roses." Abraham Lincoln
    ~~~~~~~~~~~~~~~~~~~~~~~~

     
    Old 06-17-2013, 01:43 PM   #3
    steve790
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    Re: why are my symptoms so bad?

    Thanks for your reply.

    I understand having t4 and t3 tests are important.
    But each test cost money which I don't have.
    This thyroid problem is very debilitating.
    I'm glad my Father is still around to help me out.
    The only option I have is to try and treat this problem as cheap as I can and hope Medicaid will not turn me down this time.
    Or this hormone therapy starts to reduce these symptoms so I can at least work.
    The Doctors at this clinic want this goiter checked out "ultra sound".
    But at this time I can not afford it.
    The Doctors are always talking about surgery also.
    Can not afford that either.
    Just hope the thyroid med's shrink it.
    I just can't believe the thyroid can cause all this pain and discomfort.

     
    Old 06-17-2013, 04:56 PM   #4
    Songbird55
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    Re: why are my symptoms so bad?

    Quote:
    Originally Posted by steve790 View Post
    I was diagnosed in January with what I was told was mild hypothyroidism.
    I do have a pretty good size mutinodular goiter also.
    Before I was diagnosed I had suffered with very severe symptoms which just progressively got worse for over a year and a half.
    I have no insurance and was working in the construction field not making enough to get my own insurance either.
    The symptoms got so bad I could no longer work.
    I eventually found a low cost clinic which made the diagnosis.
    TSH is the only test they ordered which was 9.53 . I was given levothyroxine
    88mcg
    After 8 weeks TSH checked again went down to 7.95.
    Dose increase to 100mcg.
    Two weeks later started getting dizzy and had labored breathing.
    Let it go for three weeks but it just started getting worse.
    So I stopped taking the medication for 4 or five days with no difference.
    Started taking the meds again and within a few days I had to go to the local ER. I thought I was having a stroke.
    They gave me many tests to see if the goiter was pressing against my wind pipe which they found out it wasn’t.
    I was told everything was Ok that the problem is my hypothyroidism.
    Also my TSH which was the only test given also was now 33.5 .
    I just don't understand and got no answers from the hospital to why my symptoms are so severe.
    I am no wimp and have worked in the construction field for more than 30 years mostly as a laborer which is a very tough job and painful to the body.
    But this thyroid thing is just kicking my butt.
    The tingling and numbness is tolerable but the extreme and I mean extreme body and joint pain is unbearable. I sometimes can barely walk.
    And no aspirin or over the counter pain relievers work.
    I still have the dizziness but not as bad. I still get the labored breathing which I think is from being weak and from lack of sleep.
    I haven't slept more than a few hours a night for almost a year now.
    The pain and discomfort plus the anxiety and worry just won't let me sleep.
    If I do doze off then I'm soon wakened from pain where ever my body touches the bed.
    Trying to sleep is worse now because I am going to owe this hospital a small fortune that I do not have and can not pay.
    I can not work; have no money; and now live with my retired 85 year old Dad who is helping me pay for these clinic visits, blood work and medication.
    More reasons for more stress and no sleep.
    I went back to the clinic which is in the same hospital I went to and they just upped my thyroid med's to 125mcg.
    They also gave me something to help me sleep which does not work.

    I am going to try and re apply for Medicaid again.
    The first time they turned me down for having too many assets.
    I now have no assets. But I'm sure they will find another reason to turn me down. They just don't give 51 year old single men with no childred Medicaid but it's worth a try.

    My question is, Has anyone here experienced such severe symptoms?
    Most of the symptoms I've read about are the typical ones - weight gain, tiredness and so on. The only typical one I have is hair loss and it is only on my legs. I actually read about people having TSH numbers into the hundreds with little or no symptoms at all.
    I still don't understand what is happening to me and why I haven't already felt at least some relief from these horrible symptoms taking this medication.
    My 85 year old Dad will not be able to support me for the rest of my life . I need to be able to work again. I need for at least some of these severe symptoms to go away so I can get my life back on track.
    Yes. The symptoms can be that bad. I was mismanaged by an Endo. My TSH got up to 37.95.

    I revised my will. I think I might have died had I not gotten to a thyroid savy doctor.

    I spent a year of my life in bed with horrible headaches and joint pain.

    Now I'm on a new dose of a compounded thyroid.

    I'm not feeling great but I am able to function and you will be too.

    Ask one of the doctors at the clinic if they will try desiccated thyroid for you.

    Yes you are sick. I have had many different surgeries on various things over the years nothing has been as hard on me as this.

    You have to get optimal treatment or your life will never be yours again.

    Last edited by Songbird55; 06-17-2013 at 05:00 PM.

     
    Old 06-18-2013, 06:45 PM   #5
    Heckofagal
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    Join Date: Feb 2007
    Location: St.Lous
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    Re: why are my symptoms so bad?

    Midwest has given you some good advice. I am sorry you are dealing with all of this. Getting back to normal takes some time and you can deal with new or worsening symptoms when you start or adjust meds.

    I also seriously thought I was dying when I was first diagnosed, and my TSH was only 7.something. 2 trips to the ER for me. I know you say you cant afford all these tests/procedures. But honestly you cant afford NOT to get your health back. My GP and endo did not bring me back to health, but I found a naturopath who got me there. (have to admit I have had some backslides)

     
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