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    Old 06-19-2006, 08:28 PM   #1
    adamace1
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    Arrow Antibody HELP!!!!!!

    Hello I was wondering if anyone could help me. I have hypo, Started off with a tsh of >160, Enlarged heart, I have gotten alot better with the hypo thing, But symptoms i still have are Light red rash on my back between shoulder blades New symptoms started 2 months after being treated on levtyroxin joint pain in both knee's and toes ankels, sometimes shoulders hips, hands wrists, fingers, It all started at once, Mri's show no damage to joints but they are inflamed, I have been to ten doctors no help, does anyone have any advice to give me, I'm running out of money, I had to move into friends basement so i can try to keep paying medical bills.

    Some of my last test are,

    tsh 4.8 Range .35-4.2 The doc did raise my dose. so i'll get tested again.
    Free t4 1.7 Range .6-2.2 The doc did raise my dose,
    Antithyroglobulin antibody 54 Range 0-8
    Ant******** microsomal antibody 25,600 RANGE >1600 is elevated.
    I have switched from generic to synthroid to see if that helps.

    I was tested for lupus it was NEG, also RA also NEG, I know these test arn't that good but thats all the docs will do. I was tested for celiac diease also negative,. I was tested for lyme diease also 0 out of 8 bands and 0 out of 3 bands so neg on that one also.

    I had a colonscope thing all looked ok, also had the uper GI scope looked ok as well. I have a very loose stool, have to go to the bathroom alot. And have alot of gas only when i do go to the bathroom.

    I'm 27 And feeling hopeless, If your still reading this thanks, any info would help alot. I know having that high of antibodys that i listed above makes it look alot like i could have another autoimmune diease, but the docs don't want to help me. I'm so angry, Why can't i walk into a doctors office and they tell me they want to help, and the'll do everything in there power to try to fine out whats wrong. I'm useually a happy peoson but this pain and not feeling good is really getting to me, I belive in god, and i would never hurt myself, But i want to pray that maybe i wont wake up one day. I've lost the last 6 years of my life, I'm starting to think that most likely it's only going to get worse.

    Last edited by adamace1; 06-19-2006 at 09:07 PM.

     
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    Old 06-20-2006, 04:07 AM   #2
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    Re: Antibody HELP!!!!!!

    Wish I could help you! So sorry you are feeling so poorly.
    Here are some (((((((((((((((((((((hugs))))))))))))))) )))))))) and I'll bump you up! Maybe someone else has a thought.
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    TT 1/26/06 -Levothyroxine 75-88

     
    Old 06-20-2006, 08:33 AM   #3
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    Re: Antibody HELP!!!!!!

    I would love to be able to help you, the funny thing about this is alot of the things that docs do is more guessing than anything sometimes. I have alot of the same things you do. Although I have Graves, but am hypoT now. I have had all the same test that you have, plus one for cholesterol, and diabetes. Mine turned out to be both of those, they say I have Metabolic syndrome(syndrome X). I also have a rash, but it is on my hand(turns out since the diabetes was starting to get managed, it has since started to go away) I am also on steriods for TED, and when they started to lower my steriods I started with the muscal pain, and joint pain. Have you had your cortisol levels checked? It also sounds like you could be dealing with Adrenal problems(they produce cortisol). See if you might be able to get your cortisol levels checked(this will tell them if you have either of those, I think) Talked with someone that suffered from adrenal crisis, and she mentioned something about these symptoms. not sure just what tests these are, but there are some people on this board that can tell you I am sure. Also if you are on steriods for anything it can cause adrenal crisis if not managed well while tappering off. Steriods after taken for long periods take over the production of cortisol, and until you reach a level of about 20mg your body doesn't produce it at all. At 20mg it is suppost to start trying to produce it again(if it doesn't, will go into adrenal crisis). So if you take steriods it could be this. Who knows, just something I thought might help. I believe you might also want to be tested for Cushings, it causes adrenal problems. Hope I helped some.

     
    Old 06-20-2006, 04:43 PM   #4
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    Re: Antibody HELP!!!!!!

    Quote:
    Originally Posted by lookin4aclue
    I would love to be able to help you, the funny thing about this is alot of the things that docs do is more guessing than anything sometimes. I have alot of the same things you do. Although I have Graves, but am hypoT now. I have had all the same test that you have, plus one for cholesterol, and diabetes. Mine turned out to be both of those, they say I have Metabolic syndrome(syndrome X). I also have a rash, but it is on my hand(turns out since the diabetes was starting to get managed, it has since started to go away) I am also on steriods for TED, and when they started to lower my steriods I started with the muscal pain, and joint pain. Have you had your cortisol levels checked? It also sounds like you could be dealing with Adrenal problems(they produce cortisol). See if you might be able to get your cortisol levels checked(this will tell them if you have either of those, I think) Talked with someone that suffered from adrenal crisis, and she mentioned something about these symptoms. not sure just what tests these are, but there are some people on this board that can tell you I am sure. Also if you are on steriods for anything it can cause adrenal crisis if not managed well while tappering off. Steriods after taken for long periods take over the production of cortisol, and until you reach a level of about 20mg your body doesn't produce it at all. At 20mg it is suppost to start trying to produce it again(if it doesn't, will go into adrenal crisis). So if you take steriods it could be this. Who knows, just something I thought might help. I believe you might also want to be tested for Cushings, it causes adrenal problems. Hope I helped some.

    Hello thanks for the info, My blood sugar seems to always be in the 80-90 range. I looked up cushings i don't seem to have any of the symptoms of that. I don't take steriods, i tried once but i stoped right away, they made me feel alot worse!!!! Everything hurt.

     
    Old 06-21-2006, 08:42 AM   #5
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    Re: Antibody HELP!!!!!!

    What about Fibro? Have you checked that out?

     
    Old 06-21-2006, 05:29 PM   #6
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    Re: Antibody HELP!!!!!!

    Quote:
    Originally Posted by lookin4aclue
    What about Fibro? Have you checked that out?
    Umm how would i get that checked out, I looked at some web sites and they say, that there really arn't no tests for this, and they talked about the test where the doctor pushes on different parts of your body, and to be honest the only spot that might hurt is by my knee's and thats one out of eleven i would need to have.

     
    Old 06-21-2006, 08:20 PM   #7
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    Re: Antibody HELP!!!!!!

    Hi adamace1. I am sorry you have been sick for so long. I know it is frustrating not to know what is wrong. When I was reading your symptoms, I wondered if you might have Lyme disease. I have Lyme. No Lyme test is completely reliable and results can vary by lab. It is important to be tested at a Lyme reputable lab. Do you know which lab did your test? Lyme disease can be very hard to get diagnosed.

    Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the number one vector-borne disease in the US and the second fastest growing infectious disease after AIDS, yet nothing is being done to educate the public and medical community about its seriousness and prevalence. Below is a Lyme disease symptom list. You can have any combination of symptoms.

    Unexplained fevers, sweats, chills, or flushing
    Unexplained weight change--loss or gain
    Fatigue, tiredness, poor stamina
    Unexplained hair loss
    Swollen glands
    Sore throat
    Testicular pain/pelvic pain
    Unexplained menstrual irregularity
    Unexplained milk production: breast pain
    Irritable bladder or bladder dysfunction
    Sexual dysfunction or loss of libido
    Upset stomach
    Change in bowel function-constipation, diarrhea
    Chest pain or rib soreness
    Shortness of breath, cough
    Heart palpitations, pulse skips, heart block
    Any history of a heart murmur or valve prolapse?
    Joint pain or swelling
    Stiffness of the joints, neck, or back
    Muscle pain or cramps
    Twitching of the face or other muscles
    Headache
    Neck creeks and cracks, neck stiffness, neck pain
    Tingling, numbness, burning or stabbing sensations, shooting pains
    Facial paralysis (Bell's Palsy)
    Eyes/Vision: double, blurry, increased floaters, light sensitivity
    Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
    lncreased motion sickness, vertigo, poor balance
    Lightheadedness, wooziness
    Tremor
    Confusion, difficulty in thinking
    Difficulty with concentration, reading
    Forgetfulness, poor short term memory
    Disorientation: getting lost, going to wrong places
    Difficulty with speech or writing
    Mood swings, irritability, depression
    Disturbed sleep-too much, too little, early awakening
    Exaggerated symptoms or worse hangover from alcohol

    When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress.

    Some people who have Lyme disease also have a thyroid disorder (I do). If you post where you are located, I will tell you of the closest knowledgable Lyme doctor to you that I know of.

    Do not give up. You will find out what is wrong. Hang in there okay?

     
    Old 06-22-2006, 04:49 PM   #8
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    Re: Antibody HELP!!!!!!

    Quote:
    Originally Posted by ticker
    Hi adamace1. I am sorry you have been sick for so long. I know it is frustrating not to know what is wrong. When I was reading your symptoms, I wondered if you might have Lyme disease. I have Lyme. No Lyme test is completely reliable and results can vary by lab. It is important to be tested at a Lyme reputable lab. Do you know which lab did your test? Lyme disease can be very hard to get diagnosed.

    Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It is the number one vector-borne disease in the US and the second fastest growing infectious disease after AIDS, yet nothing is being done to educate the public and medical community about its seriousness and prevalence. Below is a Lyme disease symptom list. You can have any combination of symptoms.

    Unexplained fevers, sweats, chills, or flushing
    Unexplained weight change--loss or gain
    Fatigue, tiredness, poor stamina
    Unexplained hair loss
    Swollen glands
    Sore throat
    Testicular pain/pelvic pain
    Unexplained menstrual irregularity
    Unexplained milk production: breast pain
    Irritable bladder or bladder dysfunction
    Sexual dysfunction or loss of libido
    Upset stomach
    Change in bowel function-constipation, diarrhea
    Chest pain or rib soreness
    Shortness of breath, cough
    Heart palpitations, pulse skips, heart block
    Any history of a heart murmur or valve prolapse?
    Joint pain or swelling
    Stiffness of the joints, neck, or back
    Muscle pain or cramps
    Twitching of the face or other muscles
    Headache
    Neck creeks and cracks, neck stiffness, neck pain
    Tingling, numbness, burning or stabbing sensations, shooting pains
    Facial paralysis (Bell's Palsy)
    Eyes/Vision: double, blurry, increased floaters, light sensitivity
    Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
    lncreased motion sickness, vertigo, poor balance
    Lightheadedness, wooziness
    Tremor
    Confusion, difficulty in thinking
    Difficulty with concentration, reading
    Forgetfulness, poor short term memory
    Disorientation: getting lost, going to wrong places
    Difficulty with speech or writing
    Mood swings, irritability, depression
    Disturbed sleep-too much, too little, early awakening
    Exaggerated symptoms or worse hangover from alcohol

    When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress.

    Some people who have Lyme disease also have a thyroid disorder (I do). If you post where you are located, I will tell you of the closest knowledgable Lyme doctor to you that I know of.

    Do not give up. You will find out what is wrong. Hang in there okay?
    HELLO, Thanks for the reply Whats the best test to get for lyme? I think i had the western blot done the one with eight bands and 3 bands. It was done at Quest Diagnostics. The doctors do that test and say, you don't have lyme!!! I have asked them about the quality and how good is the test, they tell me it's good, don't worry you don't have lyme. I am located In SE michigan.

     
    Old 06-22-2006, 05:59 PM   #9
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    Re: Antibody HELP!!!!!!

    Hi adamace1. Quest is not a good lab for Lyme testing. There is a good tick-borne testing lab called IgeneX in Palo Alto, CA. They use more sensitive testing and list more bands on the Western Blot. This is where most Lyme doctors have the testing done. If you get it done there, make sure you get copies of you results. Although the CDC requires a large number of bands to show for it to be considered positive, many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme.

    I know of one Lyme doctor in MI: Dr. Michael Ledtke in Saginaw, MI. If you think it is possible you could have Lyme, it really is important to see a Lyme doctor.

    Good luck. Let us know how you are doing okay?

     
    Old 07-11-2006, 06:49 AM   #10
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    Re: Antibody HELP!!!!!!

    Hi to you all. I'm really frustrated about my situation, I have almost all the symptoms in the table you post. I live in Miami, FL do you know I good place in miami were I could get tested? Thankssss a lotttt!!!!!

     
    Old 07-11-2006, 06:59 AM   #11
    larryld
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    Re: Antibody HELP!!!!!!

    Hi Adamace, you're not the only one in this quest on finding out what's happening to our bodies, I feel the same as you, and I am very ****** off with doctors, they treat humans as products. What I can say to you is thatthis is a battle, and may be that is in our power to survive, so have make up your mind every day don't let this situation win the battle of your life, lets figth it with all our heart so if at the end we loose will die knowing that we fought our best, and if we win, will help others with our gained knowledge

     
    Old 07-12-2006, 06:37 AM   #12
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    Re: Antibody HELP!!!!!!

    I have all of your symptoms, and many more. Like you, I have anti-microsomal abs of greater than 25,600. And that, I am sure, is the key reason that we feel like H__l.

    I was tested for Lyme's when I first got sick - 17 years ago. It was negative, but since I have most of the symptoms listed, and since at the time I got sick, I was doing a lot of horse-back riding in the woods near my home (and used to pick ticks off me on a regular basis), I have never been convinced the negative result was accurate. I have two friends who were recently tested positive who were told years ago they were negative. On the other hand, since my hair stopped falling out when I began treatment for thyroid, I think that it was thyroid, and not Lyme's, that was causing at least that symptom.

    So, I encourage you to do two things - one, get tested again for Lyme's from a better lab, and two, consider the possibility that the astronimically high antibodies may be enough to make you feel the way you do.

    I am going to do both of those things myself, but I am pretty sure that the high antibodies is enough to make me feel horrible. It may be the case with you, too. At any rate, hang in there. I have lived with it for over 17 years, and believe me, it has not been easy. It took them 15 years just to find out my thyroid was not working well, so at least you are WAY ahead of me in that regard!

    Blessings!
    Ora

     
    Old 07-12-2006, 11:19 AM   #13
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    Re: Antibody HELP!!!!!!

    Quote:
    Originally Posted by adamace1
    Hello I was wondering if anyone could help me. I have hypo, Started off with a tsh of >160, ...

    ...snip...


    Some of my last test are,

    tsh 4.8 Range .35-4.2 The doc did raise my dose. so i'll get tested again.
    Free t4 1.7 Range .6-2.2 The doc did raise my dose,
    Antithyroglobulin antibody 54 Range 0-8
    Ant******** microsomal antibody 25,600 RANGE >1600 is elevated.
    I have switched from generic to synthroid to see if that helps.

    ...snip...

    I'm 27 And feeling hopeless, ...
    I may have missed something in this topic. I am in the hypothyroid levelling process after all and certainly entitled to use that for an excuse for at least awhile now.

    I did try to read everything, however, and didn't catch anyone suggesting it might be a good idea to keep working with the doctor on just what I am doing, levelling? My first TSH was 6.4. I felt like I was dying. The doctor started me on 50mcg Levothroid plus a diuretic because feet, ankles and legs were severely swollen. Somewhere during the six weeks between that and the next lab, I had a few days where I actually started to sense some improvement in my myriad of symptoms, but the major relief during that time was due to the diuretic. Swelling subsided, rash on calves began to heal.

    Thyroid hormone levelling can be miserable. I learned that fairly quickly.

    Second lab, TSH was 3.7. My doctor told me we are aiming between 1 and 2. He upped the Levothroid to 75mcgs. That was roughly two weeks ago. I will be doing the third lab about a week into August. Shortly after the increased dosage I had about a week of feeling better than I can remember in the past 10 years or so. And then the aches, pains, brain fog, tingly fingers, desire to sleep all the time, hoarseness, sore throat, etc., returned. I'm guessing (hoping) that was a preview of that soon to come.

    I am still rather miserable much of the time. We're just not there yet. I suspect my body may need healing time even after the goal level is reached.

    Perhaps many of your symptoms are a result of the fact you are going through a process of finding the right dose for you? I am certain it doesn't help to also have financial worries while going through this. If you don't have medical insurance, perhaps you should check into what aid might be available for that in your state.

    I am sorry you feel so bad and I so empathize. I do have hope for you (and me) feeling considerably better once we reach the right levels and give ourselves a little healing time.

    Please give us an update on your progress when you feel up to it. Sending encouragement your way to keep on keeping on. I keep telling myself to remember I am glad I was finally diagnosed, that I am now 8+ weeks closer to feeling better than I was when I swallowed that first tiny pill. Please don't feel hopeless.

     
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