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  • What is the deal with TSH Testing?

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    Old 10-18-2009, 09:23 AM   #1
    shelley1
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    What is the deal with TSH Testing?

    Hi, I'm new to this board but not to being hypothyroid. I've been hypothryoid for 16 years and have yet to get treated in a way that leaves me feeling well. I'm an currently on Levoythyroxine and cytomel. When I was first added the cytomel.5mg 4 months ago to Levothyroxine .120 I began to notice a difference and felt really good. Well, everything else fell in line except my Tsh test. So eventually he continued to drop the Levo. until I got to .75 which I am today. Two weeks after dropping me to .75 I felt lousy. I was sluggish, cold in the hands and feet, water retention in my face. Fatigue and I put on 3/12 pounds in that short period of time. My T4 was 1.33 in a .71-1.85 range and my T3 was 3.87 in a 2.30-4.20 range unfortunately my tsh was .01. So the nurse informed me that if that doesn't go up to .3 the doctor will have to continue dropping my levothyroxine dosage. It doesn't matter how I feel, just what the tsh says. Anyone else had this problem?

     
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    Old 10-18-2009, 09:37 AM   #2
    FinnMaid
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    Re: What is the deal with TSH Testing?

    When on Cytomel you really should disregard the low TSH. TSH is almost surely suppressed when on sufficient T4/T3 treatment. One cannot adjust this medication based on TSH. My TSH has been suppressed for close to 4 years now but that's just the way it is - the medication is adjusted by my symptoms and Free T's. Your labs were fine before the med decrease. If your current doc isn't ready to face these facts I suggest you find another doc

    Last edited by FinnMaid; 10-18-2009 at 09:38 AM.

     
    Old 10-18-2009, 09:50 AM   #3
    tigger67
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    Re: What is the deal with TSH Testing?

    I had an endo who dosed my Synthroid based on TSH. She kept lowering it and lowering it until it got to 1, where she thought it should be. By that time, I felt so lousy I could barely lift my head off the couch.

    A low TSH can mean many things. It can be a pituitary dysfunction, adrenal fatigue, high cortisol, taking T3 meds. You need to find a doc who doses based on your symptoms as well as labs.

     
    Old 10-18-2009, 10:16 AM   #4
    shelley1
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    Re: What is the deal with TSH Testing?

    This is how I feel about the situation. I felt so good for a few months, I thought I'm finally at a point where I feel as though I'm healthy. I should say I also work out 5 to 6 days a week and sometimes that's just tougher than most can imagine when you have zero energy. I was really feeling good about my workouts, felt like they were finally making a difference. Now this. I was so upset I called the doc. over the weekend and said this is ridiculous. I cannot go back to feeling this way. He said well, maybe I can up the cytomel to 12.5 depending on your labs this coming Monday, but if your tsh is still low then we may have to go down on the levothyroxine. I'm thinking I need to find a new doctor. One that doesn't say, I don't care how you feel, but what the labs say. Anyone know of a good one in Minnesota?

     
    Old 10-18-2009, 10:22 AM   #5
    FinnMaid
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    Re: What is the deal with TSH Testing?

    Quote:
    Originally Posted by shelley1 View Post
    He said well, maybe I can up the cytomel to 12.5 depending on your labs this coming Monday, but if your tsh is still low then we may have to go down on the levothyroxine. I'm thinking I need to find a new doctor.
    Oh I would think so too The logic is just... senseless. As I said your labs were pretty fine and you obviously felt fine - I just don't get it why he would stir this up like this (if I were in your shoes I would return to those original doses by myself)

    Last edited by FinnMaid; 10-18-2009 at 10:24 AM.

     
    Old 10-18-2009, 12:52 PM   #6
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    Re: What is the deal with TSH Testing?

    You need a better doc, alright. What city in MN, Shelley?

     
    Old 10-18-2009, 12:56 PM   #7
    shelley1
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    Re: What is the deal with TSH Testing?

    I'm really tempted to return to the previous dosages myself, since I still have the levothyroxine amount available. It is left over, he has been switching lower every six weeks. The only problem with that is eventually I would like to get a doctor who will treat on my symptoms and not just the labs because I will need refills. You know, come to think of it, I don't know if the T3 and T4were free T3's and T4's taken. They may have been total. If they were, they were well within range. I'll see when I get my labs on Monday, where this will go. Thanks

     
    Old 10-18-2009, 12:58 PM   #8
    shelley1
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    Re: What is the deal with TSH Testing?

    By the way I live in Burnsville, Minnesota. However, I'am very close to Minneapolis, Minnesota and other various cities. If you have any doctors to recommend let me know.

     
    Old 10-18-2009, 01:02 PM   #9
    Aahhh Problems
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    Re: What is the deal with TSH Testing?

    Shelly, there's quite a few Thyroid docs in your state. Google the top docs list and click on your state, a list will come up, also other people have written comments of their experience with each one. Good Luck.

    Ooops, i forgot to say, I googled Thyroid Doctors, I ended up on the top docs list for "Thyroid Doctors". Sorry, I nearly sent you to top docs in general...LOL

    Last edited by Aahhh Problems; 10-18-2009 at 01:04 PM.

     
    Old 10-18-2009, 01:24 PM   #10
    shelley1
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    Re: What is the deal with TSH Testing?

    Thanks so much, I will give that a try. I appreciate all the advice I've been given on this site thus far. This is a really wonderful site. I wish more doctor's would view this site and see that what they are trying to do to help paitents isn't working as well as they may like to think.

     
    Old 10-18-2009, 01:38 PM   #11
    Aahhh Problems
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    Re: What is the deal with TSH Testing?

    Quote:
    Originally Posted by shelley1 View Post
    Thanks so much, I will give that a try. I appreciate all the advice I've been given on this site thus far. This is a really wonderful site. I wish more doctor's would view this site and see that what they are trying to do to help paitents isn't working as well as they may like to think.
    I agree Shelly, I've been suffering with Hypo symptoms for 18 years, it runs in my family. My mother had been suffering with it for 10 years, she had TSH, T3 and T4 tests done many times, they all came back normal. It wasn't until she was a shaking wreck with no memory did they decide to diagnose her. Unfortunately, I'm going thru the same thing she did, I've had countless TSH tests which have all come back within "Normal Range"... It's very frustrating. Finally, I found this new doc on that list and so far (even tho I haven't seen him yet) he has been in constant email contact with me just letting me know I'm one of many who's previous docs have undiagnosed me going off "pretty lab results"...LOL
    He ordered a ton of lab work, which i can tell you, if you get them too, it's like leaving a blood donation...LOL 15 tubes and 26 tests. But I go for my appointment on the 26th, I'm a little worried incase he says I have Thyroid Cancer, but I just want him to fix me, and my experience with him so far tells me, he's the guy to do it.

     
    Old 10-19-2009, 11:43 AM   #12
    othello
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    Re: What is the deal with TSH Testing?

    Look - how you feel is IMPORTANT, very!

    BUT, keep in mind that not everything that makes you feel good will be good for you long term.

    Throw in some Adderall for a CNS boost and some Clenbuterol for instant energy and weight loss, and you'll be bouncing off the wall - but your heart will probably "pop" and your CNS will be screwed long term.

    a.) finding a doc to raise you T4 med when your TSH is at .01 will be tough - there are heart issues, and bone mineralization etc... I can hear the malpractice lawyers now, "and with a TSH of .01 you RAISED her T4 levels when you know the risks associated ..."

    b.) perhaps adding some T3 med will help. Split it up in two doses - 5mcg morning and 5 in the afternoon.

    I'd love to be in the change-him-kill-him category (though it's already busy there) but I can see your doctor's point.

     
    Old 10-19-2009, 12:18 PM   #13
    shelley1
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    Re: What is the deal with TSH Testing?

    To Aahhh problems, I hope that you do get the help you need. In replying to Othello, my problem with the TSh testing is that something is screwy with it. Just as the previous poster stated that her mother's tsh testing was normal and her mother obviously was very ill for a long time. I believe sometimes physicians need to challenge themselves and think out of the box. I believe there is something flawed in some of these previous studies and there are endocrinologist's out there who have written articles on the heart issue and the bone issue that state these studies were flawed. I believe that with so many hypothyroid paitents not feeling well, something needs to change. Doctors cannot continue to treat people along the same lines and hope that either they stop complaining or go to another doctor. We don't feel well and there is a reason for that,this needs to be investigated. People are trying to assert more control in their general health,maybe it's due to the internet or maybe it's due to people just wanting to have more control and say so in their general health. There is some thinking that Fibromyalgia may have a direct link to untreated hypothyroidism. Our health is nothing to take lightly. If it comes to a gamble on how I feel and what the doctor says, I know my body, I trust how I feel, I've had this disease for over 18 years. I know a little of what I'm talking about. I could be wrong but doctor's have been wrong many times in the past and it sometimes takes them time to catch up with what people were already feeling.

     
    Old 10-19-2009, 12:39 PM   #14
    FinnMaid
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    Re: What is the deal with TSH Testing?

    Quote:
    Originally Posted by othello View Post
    BUT, keep in mind that not everything that makes you feel good will be good for you long term.
    I see it like this - I could lower my doses to make my TSH to fall in range - heck I could ditch T3 altogether - but what good does it do for me if I lose the ability to function as an active and productive woman - " I haven't accomplished anything in my life and I've mostly felt like crap but see - no osteoprosis"...(maybe). And I do believe it's more about Vit D deficiency - which I'm trying to avoid - that has caused an osteoporosis epidemic in this country - I would be more concerned about those insufficient official recommendations of "sufficient daily requirements of Vit D". My resting heart rate is below 70 which is quite normal - I start to be concerned (and take action) if it goes above 72. A study showed that a resting heart rate over 74 is a heart risk for a woman - THAT I can believe in - it's way much more concrete than just "low TSH is a risk even without any symptoms".

    Last edited by FinnMaid; 10-19-2009 at 01:46 PM.

     
    Old 10-19-2009, 02:48 PM   #15
    shelley1
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    Re: What is the deal with TSH Testing?

    Thank you very much FinnMaid for your posting. The last time I went into actually be checked by the endocrinologist and he checked heartrate, any signs of tremors, you know all those symptoms of being hyperthyroid, and found absolutely none. He said you look great! I said thanks. I had just seen my general practioner for a physical a week before and she stated how great I looked and that after checking me over everything looked fine. My resting heartrate was 70. I also take multivitamins and supplements to keep myself healthy. I work out 5 to 6 days a week, and many times that is a struggle because of lack of energy. I just want what I'm entitled to, and that is the best care possible. The great point was made in the posting abov; what good is it if my numbers fall within this range of normal if I can't be a productive and active woman? My family get's a mother and wife who just isn't able to enjoy life the way she should. I just believe there may be other solutions to this problem.

     
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