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    Old 12-10-2007, 06:01 PM   #1
    Glojer
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    Thyroid....T3....Fibro

    Hi everyone, been wanting to post this info from my personal experience. Maybe it will help someone else. Some of you know me, I've been around a long time and I've talked about fibro and thyroid before, but I am by no means an expert on the subject. We all know that fibro and thyroid problems can go hand in hand and many docs don't know or don't want to help us with our thyroid. They mostly want to give out pain meds and refer us to an endocrinologist for our thyroid and all the endo wants to do is prescribe meds to get our tsh in a good range and say see me in a year.

    After 3 1/2years with the endo, I finally said enough. She had me up to 112mcgs of synthroid and told me my labs were in a good range. Let's see now.....my tsh kept jumping up and my t3 kept dropping down and no matter what I said to her she would not give me cytomel (t3) and blamed my overwhelming, profound fatigue on my inflammatory auto immune problems. I was and still am taking prednisone and diclofenac from my rhuemy for those conditions and all my ANA blood work since taking them comes out normal. I don't have to tell any of you of the fatigue, mine was very life altering to say the least. Although I exercised and continued to take care of braveman when he was sick, I did all but stop cooking and having friends and family over to the house or go visiting and forget about shopping. Anyway you get the picture.

    Sometime this past year (fibro fog) I talked to my family doc, a wonderful lady doc who is an osteopath. She treats my fibro very conservatively with sleep meds and muscle relaxers and recommendations (she gives me a script for tax purposes) of exercise. Anyway she agreed to start me on cytomel and take over my thyroid treatment. I started on 25 mcgs along with my 112mcgs of synthroid. I had more energy and my tsh dropped alright almost out of sight down to 0.003. The doc was very worried about thyroid storm but I did not have any symptoms of hyperthyroid problems except not falling asleep even with my AmbienCR. We continued to drop my synthroid dose trying to get the tsh in a more legitimate range and keep the T3 up. We finally settled on 50mcgs of cytomel (t3) and no synthroid. My tsh settled at 0.100 and the doc said lets let it ride for 5mo. since I still was not having any hyper symptoms and sleep was not an issue anymore and my tsh was climbing.

    I am usually not at a loss for words, but I don't have enough words to tell all of you how much BETTER my fatigue is. I still have some, but I am amazed at how much energy I have compared to before. Seriously, we have had tradesmen and repairmen and not to mention our good friends the carpenter and his wife here for WEEKS, months even and I have kept pace with all of it. Oh yes, I have had a few bad days but to be on the better side of the fatigue has been so wonderful.

    When I was taking the synthroid and cytomel together and my tsh was hyper I had some of that quick lets get up and get things done energy and I could drop a pound of weight a day with my speeded up metabolism. I don't have that with the cytomel alone. I do however have a better overall feeling of energy and better health. I am however back at the 'gain' a pound a day and struggle to lose it, but I will gladly be there and feel better.

    The object of my post is to get those of you who struggle with fatigue (and who doesn't with fibro) to get to thinking about your thyroid and perhaps to develop a plan with your doc to start treating that problem. Do some research about thyroid and tsh and t3, and get copies of your bloodwork to know what is going on with your body. Most docs aren't trained to treat thyroid if you fall with in the lab ranges, they tell you everything is fine and believe me it is not. Also a lot of docs don't test for T3 and you need to know where you fall in that range also. The thyroid board here is a great place to start with your research.

    I know this is a long post but I can't urge you enough, if you have lethargy, fatigue, dry skin and hair, brittle hair and nails, a family history of thyroid problems and yes that one the docs don't want to hear a problem with weight gain and no success with losing weight with regular diet and exercise. I don't know all the symptoms but you get the point. Please get your thyroid checked and treated along with your fibro if the lab work is not normal. You won't regret it.

    Glojer

     
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    Old 12-11-2007, 07:18 PM   #2
    builder
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    Re: Thyroid....T3....Fibro

    I also had lousy results with Synthroid. Soso results with Armour. I was able to get on Cytomel alone. Cytomel makes me feel better than any other thyroid meds I have take over the last 12 years. It amazes how doctors act like you are asking for narcotics when you ask them for Cytomel. Some doctors are so out of touch and know only Synthroid, that one told me he thought they stop making Armour. I always thought my body never converted Synthroid T4 to T3 in my body. No matter how much T4 I took. The moment I took Cytomel, I felt a difference immediately.

     
    Old 12-12-2007, 08:56 AM   #3
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    Re: Thyroid....T3....Fibro

    okay girls i will ask my dear doc. what the hey, right? your timing is lovely, as always glojer. i have been sleeping so much lately. usually 2 or 3 hours during the day. been blaming it on the bladder thing, the fibro thing and the arthritis thing. i wrote it down on my list. i see laura next week.
    thanks for taking the time and energy to write it all down. i am so glad you both feel better.
    so, tell me, where should my T3 be? and T4? never did get the hang of that all. glad i have you kiddo!!!
    love,
    blue

     
    Old 12-12-2007, 10:04 AM   #4
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    Re: Thyroid....T3....Fibro

    rstarre, so happy you are doing well on the cytomel. It is amazing how after struggling with the synthroid we just know our bodies need the T3. I didn't need to get into the Armour and all that, I responded to synthroid but it just wouldn't do the trick.

    Blue.....That sleeping thing is a positive give away for me when it comes to thyroid. With your other health 'issues' it may be different for you. I really think that our fibro has something to do with keeping us from converting our T4 to T3, but I'm not an expert. I think that would be a good research project or study to see how many of us fibromights do better with our fatigue on cytomel.

    So the way I understand it is if our thyroid gland isn't working up to par we aren't making enough T4 and not converting it to T3. We need a TSH (which is thyroid stimulating hormone) that is between 0.3 and 3.0 according to the endocrinologists. The lab range on most test results say 0.3 and 5.50, so most regular docs read anything under the 5.50 even if it is 4.9 (like mine was) or 5.0 as normal. OK, so the endo says we need to get your tsh lower and they take a full panel which includes tsh, t4 and t3 and start to give you synthroid to lower your tsh. When your tsh hits their magic range (not higher than 3.0) they tell you everything is now fine. OK but I don't feel fine!!! So, when WE get to checking our T3 levels on our bloodwork we see that our T3 levels keep dropping and we ask for T3 and the answer is almost always NO. We are suppose to convert T4 to T3 but not all of us do and our T3 level should be in the upper 70% of the range. So in a range of 2.3 to 4.2 (or 230 to ***) your T3 level should be around the 3.7 to 4.1 mark or around 360.

    All that said my T3 level did not make it quite that high but as long as I was over the half way mark I felt better. Even when you are taking T3, the docs don't always check that. They usually go off what the tsh says and as long as your body is getting t3 from the meds because it won't convert to it your tsh should be in a good range. All of this really is and should be based on how you feel and not on some magic numbers.

    I'm not sure I explained this right, but I hope it helps blue. Elmhar is our resident expert on this subject, I think she is on the thyroid board more now. I'm taking braveman for a CTscan today to make sure he is still cancer free, dance for him in your dreams while you take a nap for good luck.

    Glojer

     
    Old 12-12-2007, 10:09 AM   #5
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    Re: Thyroid....T3....Fibro

    i am dancing. and awake. giggle have work to run and do. will collaps later. thanks for the info. you did great. will print this out and take to laura as well. she loves it when i bring her stuff from here.
    be safe.
    love to braveman and dancing all the day long,
    blue

     
    Old 12-13-2007, 11:08 AM   #6
    Glojer
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    Re: Thyroid....T3....Fibro

    Good Luck with your doc laura, we love our lady docs don't we. Mine is Dr. Kate, everyone calls her that, it is what she tells you to call her.

    rstarr, just reread your post and I love your comment on how some docs act like you are asking for narcotics when you suggest or ask for cytomel. Sooooooo True!!!

    Glojer

     
    Old 12-17-2007, 08:20 AM   #7
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    Re: Thyroid....T3....Fibro

    hi glojer,
    i printed out what you said and am taking it in tomorrow. had to find it first. giggle. under a pile of papers for work of course. giggle.
    thank you girlfriend.
    blue
    ps what is cytomel?????

     
    Old 12-17-2007, 09:31 AM   #8
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    Re: Thyroid....T3....Fibro

    Cytomel is the T3 hormone drug. Just like synthroid is the T4 hormone most commonly prescribed because we are suppose to convert the T4 into T3. For some of us it is better to take the T3 hormone because we don't convert T4 enough or properly or something like that. Anyway it works a lot better for me. Good Luck, I know your doc laura would not steer you wrong, she has your best interest at heart.

    Glojer

     
    Old 12-19-2007, 06:53 AM   #9
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    Re: Thyroid....T3....Fibro

    hi glojer,
    saw laura. she ordered the blood work and i will go tomorrow to the blood letters. she will not script cytomel. she will refer me to an endo for that. her words, not mine, she has a thing about new drugs and her patients. she did say two of her patients are doing better on the cytomel.
    anyway she was only doing the tsh thing not the rest. so we do the full monty this time. should know in a week or so. thanks for your help. laura says hi cyber friend.
    peace,
    blue

    Last edited by bluelakelady; 12-19-2007 at 06:54 AM. Reason: used a normal word and was dotted, so i changed it.

     
    Old 12-20-2007, 07:35 PM   #10
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    Re: Thyroid....T3....Fibro

    Good Luck with the endo blue. I'm sure with laura's input you will get the right med. It may take a few visits for the endo to finally prescribe t3. Seems they like to keep running those blood tests. Or maybe the endo will prescribe the t3 (based on your bloodwork) and see if the t3 works better. By the way do you take your thyroid meds before going for the blood test? I have always taken my test at approx. the same time in the morning and I don't take my meds before hand. I know the old theory if the meds are in your system it doesn't matter but I like to be consistant so I feel I'm comparing apples to apples if you know what I mean.

    Glojer

     
    Old 12-21-2007, 08:45 AM   #11
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    Re: Thyroid....T3....Fibro

    never thought about it. i usually take my meds without thinking. guess i better stick to that for now. my apples, giggle.
    i noticed on the blood order she ordered t-3 total and tsh and t-4 free. not t-3 free tho. will it matter????? giggle.
    just what i need, another doctor. this makes 8, gee my lucky number. giggle.
    thanks for all your help. you be good and take care of yourself over the next week. kisses and hugs to braveman and miracleman. i think of them often. miracleman is my hero.
    love,
    blue

     
    Old 12-21-2007, 12:24 PM   #12
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    Re: Thyroid....T3....Fibro

    Total t3 should give you what you need to know. Good Luck! Miracleman is everyones hero, 68 and still going. I will give him your love. Just imagine some stiff skinny shaky arms reaching up from his wheelchair and giving you a big hug. We will see him on Sunday. We felt so bad this year we could not put up his little fiber optic tree due to the room he is in at the nursing home. Taking it easy is my middle name. Stressed myself out a few days ago and realized what was happening and said .....oh no fibro not going to happen.....and I took a few deep breaths and gave myself a talking to and let the stress take a hike. Take care of yourself too during the holidays. Catch you later.

    Glojer

     
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