so confused

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Hello, I'm so lost and you all sound very smart so maybe you can help me. This kind of a long story. 21/2 months ago I switched doctors because mine was kinda mean. Btw im hypothyroid or atleast i was. So when I switched doctors I had them test my thyroid levels since it was almost 3 months since last blood work. Anyway i was on 125 levo at that point. When they got my blood work back she said my tsh was 22 which was high so upped my levo to 137. A couple weeks after starting that 137 i woke in full blown anxiety attack went to er because i thougt i was having a heart attack. So followed up with a different foctor at the office and she took had more blood work to check levels again. 3 days later called me and said that my tsh was 0.38 which she said was low. So she said to take the 137mg on M-W-F and the other 4 days take the 125mg. At that point was fed up with the anxiety, and feeling like crap. I switched back to the mean but thurough doctor and she was not happy about how they handle my thyroid issue. She sent me for ultrasound on thyroid and it was normal she also pulled me off all thyroid meds for the past 2 weeks to level out. So she got blood work back yesterday and my tsh is 1.1 but she said my t4 was still high. So tomorrow i start 100mg of levo. I'm confused and don't know if i am hypo or hyper. Could any of you help me on this? Thank you in advance.

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  • Posted

    When your TSH level is low, and your Free T4 and Free T3 level is high, this indicates hyperthyroidism.  When your TSH level is a high number and the Frees have low numbers, this indicates just the opposite - hypothyroidism.  It looks as though your doctor is diagnosing solely by TSH and she should not do this.  I don't know if you had thyroid surgery or radiation to your thyroid and whether this is the reason your thyroid levels are low necessitating you to take levothyroxine?  Or the other reason you may have such swings is that you have an autoimmune disease called Hashimoto's.  With Hashimoto's, the thyroid is extremely sensitive to both thyroid blocking drugs like carbimazole and methimazole causing a person to go very hypo very quickly and to thyroid replacement drugs like levothyroxine causing a person to go hyper very quickly.  To confirm a diagnosis of Hashimoto's, a doctor has to test blood for antibodies.  These tests are TGAb and anti-TPO.  There was a lady on this Board who knew she had Hashimoto's and could not control her thyroid levels until she took Regular L-Carnitine, an amino acid supplement you get in a health food store.  The dose she took was 3,000 mg a day.  That stabilized her levels better.  So I hope this information helps you but not having more information on your case, in particular, it is difficult to offer you more specific help.
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    • Posted

      Thank you for responding. No i never had anything done to my thyroid. The only thing they did was send me for a ultrasound on it and they said it looked good there was nothing on it. They did do blood work to check my autoimune but that was just for lupus and stuff and they said that all was good.
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    • Posted

      Ask them to do the specific tests that checks for Hashimoto's antibodies TGAb and anti-TPO.  I know I heard an endocrinologist give a talk and a lady in the audience asked why endos never check for the reason for hypo and he said he always does.  But I know most of them don't.  If you know the reason, you better know how to treat.  If you do get confirmation of Hashimoto's, I can send you the lady's testimonial  that posted to this Board before and was very successful..
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    • Posted

      I never been to a endo but that is on my list within the next couple weeks. This is kinda a weird question but what do they do when you go?
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    • Posted

      In answer to your question - What do Endos do when you go?, it depends on how you are presenting.  If hyper, they try to determine the cause for this, i.e. whether you have an autoimmune disease like Graves or Hashimoto's.  However, if hypo, most of them do no investigations for the cause of this but just treat with levothyroxine.  It also depends on how much knowledge the patient has and what she asks the doctor for and even then, if you are hypo, they may do nothing else but adjust your dose of levothyroxine.  If you have Hashimoto's, it can present as hyper but often presents as Hypo once it burns itself out.  It is important to know if you have Hashimoto's so I would ask the doc to test for those antibodies.
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  • Posted

    What a yo-yo of doctors and their diagnoses!!! When I was diagnosed i was hyper and that was 8 months ago.  Since then, I have had blood work done every two months and my medication has changed 3 times. At my last visit I was leveled out but according to my dr, I am starting to move towards hypo.  That freaked me out because i was heard that being hypo packs on the pounds.  I mentioned my concerns to the doctor and he said Im still good but if I suddenly put on 6-8 pounds for no reason I need to immediately go get blood work and cut my medication in half. I just looked at him like he was crazy. Wait until I put on 6-8 pounds??? What the heck was he talking about? At this point, I'm still confused half the time because I never really know where I lie. Im a freak with the scale now and I know that's ridiculous but I worry about what the dr said. From what I understand, it's a never ending battle I guess you could call it. A co-worker of mine has been dealing with this since age 12 and said that you just learn to deal with it after awhile. Please take it one day at a time. There are so many of us that you can talk with about this. We all need someone for moral support and that's why we are all here. smile
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    • Posted

      Thank you for responding. Yes these doctors have no clue wth they are doing. I was diagnosed after the birth of my first that is 9 now but really never had any problems staying leveled. I'm so upset for ever leaving my doctor going to those nut jobs.
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    • Posted

      well, you seem to be on the right track. Hang in there! You can vent to me anytime. It's hard to talk to other people about this if they dont understand it. My boyfriend probably thinks Im nuts because it's a topic that I need to have to make me feel better about it all so Im trying to free him of the agony and have discussions with people who get what your saying. lol
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    • Posted

      Thank you so much. My husband is tired of me crying all the time over this. He never had anyone in his family with a tbyroid disease. I got mine through my mom. She is hyper and I was hypo. Truth be told i would rather go back to hypo. I never exprinced anxiety or panic attack in my life until those quack jobs screwed me up.
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    • Posted

      Im sorry sad

      To me, both hypo or hyper suck!!! There are issues no one likes from either of them.  I wish we could all just feel normal again. Knowing that this a lifetime issue that could change at anytime gives me major anxieties. I try hard not to think about it but that's a lot easier said than done. 

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    • Posted

      From a thyroid point of view, I am feeling pretty normal now.  And my ophthalmologist confirmed my eyes are no longer dry.  I think that is because my thyroid values, including antibodies have normalized.
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  • Posted

    The more knowledgeable you become about your thyroid disease, the more empowered you will be with any doctor.  I know I scare some of them or tick them off but there is no way any of them can put anything over on me or scare me.  I know a lot of people with Graves Disease like I have get pushed into having RAI or surgery to treat it but I let them know up front, I will not accept that treatment.  I also learned about supplements and got tested for deficiencies like Total and Free Carnitine levels and vitamin D levels and add these supplements if my results are low.  The docs don't know much about the benefit of supplements unfortunately because they are not trained that way so you have to do your own research.
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    • Posted

      I'm not gonna lie i really never worried about my thyroid because my old doctor made sure i was always leveled. I would forget my levo some days and would just be like oops. With all tbis that has been going on was a huge eye opener. When my t4 lowers will i go back to hypo? I hate the anxiety that comes with the hyper. Other than the anxiety i still have all hypo symptoms. I'm cold all the time, tired, my hair and skin is bone dry.
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    • Posted

      For all your thyroid tests, there are ranges from bottom figure to top figure and if your results in anywhere within those ranges your results are considered normal.  However, most people feel best at mid range or slightly above.  So if your T4 drops, as long as it stays within range, you won't be hypo.  It is common to have anxiety or palpitations with both hypo and hyper symptoms. 
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