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    Old 07-03-2004, 04:38 PM   #1
    Kath833181
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    Question My story -- unlike the doctors -- I know you will listen

    Ok about a year ago, I started suffering from strange symptoms that are in my records. One day I felt like I couldn't breathe right, and I went to the ER. Nothing.. written off to my head. A few months later I noticed my heart felt like it was coming through my chest. Although they inaccurately wrote down palpitations... I told the doctor it was more like my heart was beating hard. I still feel this, I don't think it ever went away.

    I also told her that I felt like I had shaking arms. I have been complaining about this for about a year now.. every three months. I have swtiched doctors complained louder, no one seems to be listening.

    Over this same time, largely to shut me up, my doctors would agree to TSH tests.
    Spring of 2003 - TSH 1.2 Free T3: 153 (80-200), Free T4 1.5 (normal .93 to 1.7)
    Fall of 2003 TSH .88
    Spring of 2004 TSH .57

    The moment I saw the Spring 2004 number I contacted my doctor and said to her that I really really was concerned about the numbers dropping especially given my complaints all year long about this stuff. She said she wasn't concerned because the TSH was normal.

    To me this seems annoying since it seems to clearly be dropping. Also had I not complained of SOOOO many classic hyperthroid symptoms... prior to these results, I could see it but I can't understand how she can still write this off to anxiety.

    Additional symptoms I have noticed over the last month is going #2 more than twice a day, blurry eyes (last visit before the results I asked her for an eye referral for this) and being just ravenous.. very hungry. Also she has me on Ativan and I feel like I can't sleep without the Ativan. I take a small dose .5 mg.. but still, I am really additcted. If I don't take it, I will not fall asleep until like 3:00 am. It isn't that I am worrying about things I am just not tried. And I only have one cup of coffee per day and no soda.

    She still says this can be stress and she wants to retest me in November.

    Should I be more aggressive? I am really just here because I am so confused. I know in my heart there is something wrong but I don't have the the objective numbers.

    Oh also, I see medical records of others at my job -- I am an attorney and I continue to see lab results for TSH of .4 and up is normal... but my doctor says .2 and up. Which is it?

    Thanks.

     
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    Old 07-03-2004, 04:56 PM   #2
    opalfire
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    Re: My story -- unlike the doctors -- I know you will listen

    Kath.........find another doc! This one is rather clueless and get OFF that Ativan as fast as you can!
    Try calling some osteopathic docs (call the office first and ask if that doc routinely orders Free T3 and Free T4's and orders Armour thyroid if indicated for his hypothyroid patients...make an appointment if they say yes.
    TSH is really useless for checking anything other than your pituitary response to the thyroid. It is not a thyroid test (despite what the Synthroid people tell the doctor). I don't particularly like Synthroid and if you read enough of these board messages you'll notice that most of those people still complain that things aren't right with them.
    Good luck and keep us posted! If we can't make suggestions, at least we can commiserate!
    Judy

     
    Old 07-04-2004, 06:38 AM   #3
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    Re: My story -- unlike the doctors -- I know you will listen

    Dear Kathy,

    I'm with Opal about finding a new Doc. I just went through the new Doc. hunt and found myself back with a Osteopathic Dr. I had seen for a short time years ago. D.O.s tend to treat the patient with symptoms, not just #s on a lab report.

    I think, being an attorney, you have the same problem many of us have. You can fight to the death for others but you have a problem making yourself heard when it's about you. I know when my mother was taken to the hospital on a Friday night with severe pain and I was told they were just going to make her comfortable until Monday morning and then run tests. I was not happy. Sat morning when her pain got worse and she began to have trouble breathing I said if someone didn't get to her problem PDQ I was going to call a lawyer. They started tests within 2 hours and it turned out she had a gall stone lodged in her bile duct leading from the gall bladder. She had also had a heart attack, probably triggered from the extreme pain she was in. Tests were completed Sat and Sun and she was put on different pain killers, muscle relaxers, antibiotics, and heart meds. First thing Monday that stone was removed and she was able to come home the following Friday.

    My youngest sister, 20 years younger, got a nasty type of cancer when she was 15. When she didn't respond to initial treatment the Dr.s gave up on her and said she would be gone by Christmas, 10 weeks away. I got on the phone and called a nurse friend of mine, sobbing hysterically. She gave me a cancer hotline # and everything changed after that. These folks called her Dr.s and gave them different course of treatment. In short, that was 19 years ago and she is alive and well today.

    You must keep fighting for yourself. You cannot give up. God will help you if you ask him too and this board can offer so much encouragement when you are down.

    I am hypo and have been on synthroid for 7 years now. I also have arthritis in my neck, shoulders, and lower extremities. Just to make life interesting I have recently been dxed with lupus and have cardiac and lung involvement there. I tell U all this only because I sometimes complain of symptoms too but with all this going on the shoulder stiffness is probably from the arthritis, not being hypo.

    I can't tell U even if you are dxed that synthroid is the drug for you. I don't know, I am not a medical person. PA seems to be a hot bed for this problem. I have a son who was dxed hypo at 10 years of age, 4 aunts who are hypo, my mother-in-law is hypo, 2 of my husband's aunts are, 5 neighbors, and our daughter's inlaws are all hypo. All of them are on synthroid. There doesn't seem to be a Dr. in all of PA who will prescribe anything else. The area ranges from the Phila******a/Reading area all the way east and north to DuBoise PA and Ohio. Maybe it's something in the water. These 16 people, including myself, have all been on synthroid, some of them for over 40 years; and done well. Recently 3 of the ones in their late 60's and one 72 year old have developed cholesterol problems and have had cytomel added to help their systems use the synthroid.

    I think the real problem is finding a Dr. who will treat you and your symptoms and give you whatever medication is right for you, be it synthroid, armour or anything else. The hard part is going to be finding a Dr. who will listen. Keep trying, keep looking. If worst comes to worst and you can't get info any other way, make cold calls to Dr.s in the phone book and talk to their office person. Just don't give up.

    I got long winded, I'm sorry. Good luck and stay in touch. This board is sooooo great for picking you up when you are down. I don't know if there is a Dr. on this board or not but there is a lot of heart and good wishes here. People who have struggled to feel good just like you are doing now. We will all continue to struggle and so will you but there is some comfort in doing it together.

    May God Bless You and All Those You Love
    Patience 50/ Bonnie

     
    Old 07-04-2004, 08:10 AM   #4
    Kath833181
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    Smile Re: My story -- unlike the doctors -- I know you will listen

    Thanks for the responses. I guess I am just torn between going back to my current doctor who seems reasonable but just doesn't want to do anything until I fall out of the normal territory and looking around for a specialist.

    It isn't so much fighting but that it seems the more I fight the more I get labled a nut, not only by the doctors but also, my employer who has absolutley just about had it up to here with my doctors appointments. I recently applied for disability insurance and I got denied due to my many doctors appointments. Doesn't that seem unfair?

    Personally I don't know what to do.. i mean my TSH is normal. I fear going to one more doctor because EVERY SINGLE ONE OF THEM... looks at the TSH and says... um why don't we just watch it. If I go to an osteopath -- I fear him putting me on drugs when I really might not need them. I am 33 so I find it strange that I would have arthritis now.

    Also I checked out an OSTEO in my area (that is known for thyroid) and he didn't take medical insurance. So that was pretty much out.

    And what if it is from stress? How can 3 or 4 doctors all think that it is far more likely stress? I just feel like i can't fight when I am fighting so many people. Like maybe it is me that has to realize that maybe I just have to deal with it until something shows up on my records. My doctor insists that my TSH is actually normal. That under the new more accurate testing, it is quite possible that the TSH might go down given the more accuate test. She says that MOST people have an optimal level under the number one. She says my arms shaking is not noticeable and thus we all have different levels of shaking, and my heart, she thinks is because I am over weight.

    So um.. could be... and since she tested my Free T3 and T4 in 2003 and it was in the normal range she doesn't see any reason to test it again, although she might do it another time.

    Basically I don't know if I should push this or if she is right. I can't push it unless I have to because of my employer. I am 33 and I go to the doctor more than my boss who is 61 and most of the time I come back empty handed.

     
    Old 07-04-2004, 08:55 AM   #5
    opalfire
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    Re: My story -- unlike the doctors -- I know you will listen

    Quote:
    Originally Posted by Kath833181
    Thanks for the responses. I guess I am just torn between going back to my current doctor who seems reasonable but just doesn't want to do anything until I fall out of the normal territory and looking around for a specialist.

    It isn't so much fighting but that it seems the more I fight the more I get labled a nut, not only by the doctors but also, my employer who has absolutley just about had it up to here with my doctors appointments. I recently applied for disability insurance and I got denied due to my many doctors appointments. Doesn't that seem unfair?

    Personally I don't know what to do.. i mean my TSH is normal. I fear going to one more doctor because EVERY SINGLE ONE OF THEM... looks at the TSH and says... um why don't we just watch it. If I go to an osteopath -- I fear him putting me on drugs when I really might not need them. I am 33 so I find it strange that I would have arthritis now.

    Also I checked out an OSTEO in my area (that is known for thyroid) and he didn't take medical insurance. So that was pretty much out.

    And what if it is from stress? How can 3 or 4 doctors all think that it is far more likely stress? I just feel like i can't fight when I am fighting so many people. Like maybe it is me that has to realize that maybe I just have to deal with it until something shows up on my records. My doctor insists that my TSH is actually normal. That under the new more accurate testing, it is quite possible that the TSH might go down given the more accuate test. She says that MOST people have an optimal level under the number one. She says my arms shaking is not noticeable and thus we all have different levels of shaking, and my heart, she thinks is because I am over weight.

    So um.. could be... and since she tested my Free T3 and T4 in 2003 and it was in the normal range she doesn't see any reason to test it again, although she might do it another time.

    Basically I don't know if I should push this or if she is right. I can't push it unless I have to because of my employer. I am 33 and I go to the doctor more than my boss who is 61 and most of the time I come back empty handed.

    Kath.....stop second guessing yourself. It's admirable, but misplaced at this point. Understanding that you're an attorney, let's go through this step by step.
    A) You are not well.
    B) You're doctor doesn't want to do anything for you.
    C) GET HELP ANY WAY YOU CAN!
    Does that sound like a plan?
    If you wait for your insurance plan to kick in for you.....don't hold your breath. Their plan is to "do nothing is best". An osteopathic isn't going to pump you up on pills you don't need, especially if you know what you're doing. Your Free T3 and Free T4 are both just above mid range which is okay for men, the elderly, and the cardiac patients. It is NOT okay for you (obviously)...hence the reason you need a doc that considers the patient, not the numbers. Do not consider the TSH, although to ease your mind, yours is not optimal for the majority of women. Women generally feel best at a TSH of .5 or lower. My mother is 78 years old and her TSH is .43......get the picture? She is in optimal health (why didn't I inherit her genes?) and still cuts her own 1/2 acre lawn with a push mower by herself. I envy her very being because I was never blessed with her energy level (no, she doesn't have Graves' Disease either, nor is she hyperthyroid).
    I hope this helps you get through this and find another doctor. Please call each office and ask if their doctor uses the Free T3 and Free T4 routinely on his hypothyroid patients and/or uses Armour thyroid if indicated. This is where the osteopathic or naturalistic doc is best. They don't pay attention to the hype from Synthroid.
    Facts: If you look up the recalls for drugs, Synthroid is among them. Armour has been out 50 years longer and has never had a recall. Although it's made from pig/beef glands, it's dried and batched. Each batch is tested for purity and dosage. It is not dirty, nor is it unreliable. Synthroid can't make that claim. They're in hot water again with the FDA because they're dosage varied more than 20% per tablet.....FDA only allows 10%. It was going to be pulled off the market last year...again.
    The reason for this history lesson: Synthroid funds many medical colleges, guess which theory is being taught? The one where Synthroid will shine....use only TSH and Free T4 tests and that way it will never show that Synthroid (all T4) is deficient. If the doc did a Free T3, it would show that the patient wasn't converting enough T4 into T3 (the usable hormone). Hence, they want the docs to believe that it's not necessary. I have often read of patients on this board complaining that their doc says that it's old fashioned and unnecessary and refuse to order the test (good brain-washing, huh?). However, with Armour, it contains T4 (80%), T3 (20%), T2, T1, and T0, all necessary and also contained in human thyroids, but in different proportions. My argument is that if you're already having trouble producing enough T4, wouldn't it stand to reason that you're going to have trouble converting sufficient amounts of it into T3?
    Please reconsider finding another doctor. You really need to do it for your own sanity and health. More things will begin to go wrong with you over the years, including rising cholesterol, more aches and pains, not sleeping well, more anxiety issues, panic attacks, unexplained weight gain (eek), and the worse thing about aging, osteoporosis. Is that what you want as you age.......bad health? Hypothyroid is even often a cause of dementia in the elderly. It's still under reported in the public though, I've read articles on it. It can be found if you just type in a search engine for hypothyroid and dementia.
    Keep us posted on your progress!
    Judy

     
    Old 07-04-2004, 10:04 AM   #6
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    Re: My story -- unlike the doctors -- I know you will listen

    I lean toward the possibility you are subclinical hyperthyroid, given the fact that your TSH is dropping with each test. Perhaps your free Ts have risen, but you can't know that without more tests.
    I would request additional tests... antibody tests. If you have TSI and/or Tg antibodies, that would indicate possible Graves' disease. When to treat seems to be a universal conundrum, though. Too soon puts you at risk for worse conditions; too late, others.

    I sympthasize. Wish I could do more. You're sick, but no one seems to notice... that's a heck of a place to be stuck.

     
    Old 07-04-2004, 10:38 AM   #7
    Keraly
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    Re: My story -- unlike the doctors -- I know you will listen

    Just a figure. You mentioned your doctor says .2 is normal, but on the labs WE have, the range is 0.370 - 6.00. This puts you continually nearing the bottom of the rather large range! Most of the members of this board would say you should be above the mid-range to feel good, if I am correct. Perhaps this mostly applies to Free T3 and T4. Hopefully the next test you have (which you might consider ordering for yourself from the Healthcheck USA people you can find on the internet) you will fall outside the range, and then the doctors will listen, if you're not ready or able to seek another opinion at this time. I know what it's like to feel almost as if YOU are on trial when you go to the doctor. We just made first appointments with five doctors looking for help for my son's undiagnosed condition, and after a while, I started to get that nervous feeling in the pit of my stomach when they questioned us. Somehow they managed to turn the situation around and make it feel as if WE were being measured up or are need of a credible reference, instead of them! I don't know how they do it, but they sometimes insinuate that everything's less urgent or troublesome than you know it to be, and that we are over-reacting, or that it is all caused by stress -- in effect, in our heads. It does something to our self-esteem and the faith we have in ourselves, if we are at all humble. It's times like these when I wish I had a type "A", "Driver" personality, temporarily. I can manage to be an advocate for my son's needs, but not at a great price to my own well-being. I leave the doctors' offices feeling like a pest, and yet knowing I'm not asking them to do anything but what their job description says they should -- that is to diagnose and heal. Many doctors are also condescending, and that infuriates me, yet is effective in shutting me up! I am not a person who enjoys conflict. I like others rallying around in support. So these situations wear on me. I'm sure your workplace friction also wears on YOU. Boy, wouldn't it be Heaven to have some recognizeable diagnosis to report to all of those who have been non-empathetic and even smug with you? I think the hardest thing for me to take is when friends even start to doubt.
    I wish you resolution and treatment with God's speed! There will be light at the end of the tunnel soon. At least your body falling thyroid numbers are doing something for your situation, moving toward not being ignored, I hope! ~ Tracy

     
    Old 07-05-2004, 04:42 AM   #8
    opalfire
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    Re: My story -- unlike the doctors -- I know you will listen

    The TSH should be below "1" for women and around "1" for men.
    The Free T3 and Free T4 should be in the mid-upper range, depending on how you feel.
    Judy

     
    Old 07-05-2004, 08:21 AM   #9
    Kath833181
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    Re: My story -- unlike the doctors -- I know you will listen

    Hi guys, well I sent an e-mail to my doctor asking for more blood tests.

    I wanted to ask you guys... can "fasting" blood tests make a difference? I suspect yes. When I had the 1.2 and .88 TSH tests I was NOT fasting. But on this latest round, I fasted and my TSH was lower. We all know that some people can have symptoms and the tests appear normal... isn't it possible that food does interfere with the test results? And I do know about the goiterins, but I was thinking other foods also.

    Anyway, you guys don't show a pretty picture -- I thought hyperthroid was just a simple thing where you get medication and it is under control. But I am learning that might be far from the case.

    I do always feel on Trial with the doctors though. My doctor keeps saying stress... ok fine, so I ask for stress meds... Ativan.. and she won't give them to me. She gives me a low dose and a low amount. Now doesn't this seem as* backward? I come to her with complaints of trembling and heart seeming to come though my chest. Her diagnosis, stress. So um where is the treatement.... um.. apparently I am just supposed to suck it up. Doesn't that indicate that stress is not a real diagnosis?

    So I get my test retults back, and my cholesterol is high (240). She freaks out about that, and wants to put me on meds for that. Um, I am 33 no offense but I am not really worried. My parents are 79 and 76 and have no heart problems. But my entire family has a history of thyroid. And I don't want you guys to misunderstand, I do like this doctor, I think she is more open than most. I just feel like I have to prove to her I am not a nut.

    But my TSH falling like a stone over a year where I have been to the doctors every three months for trembling, that is nothing to worry about.

    So this Friday I will be in the city for a job interview, I am interviewing for a less stressful job in the Federal Courts and I asked if I could come over and get blood tests. I said if she wants to see me I would do that but depending on the results of the further testing, we could then make decisions.

     
    Old 07-05-2004, 05:55 PM   #10
    patience 50
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    Re: My story -- unlike the doctors -- I know you will listen

    Hi Kath833181,

    Fasting should not have any effect on thyroid blood tests. You mentioned that the osteopathic Dr. does not take ins. Would you go if your insurance would reimburse you for part of the fee if you went to an out of network Dr? I, like you, stayed with Dr.s because of ins. and wish I had paid out of pocket to get better care. I found out later that I could have gone and just paid and been reimbursed later.

    I know money is always an issue but how much is your good health worth? Perhaps if you call your ins. you will find out that you will be reimbursed a percentage even if you do go to an out of network Dr. I hope so because I think that other Dr. may be the one for you.

    May God Bless You and All Those You Love.
    Patience 50

     
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