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Wrongly diagnosed with hypothyroidism

Posted , 5 users are following.

Fenway
Fenway

Was diagnosed in local ER Depart mentioned that I had issues with my thyroid. Followed up with my PCP and she told me I had hypothyroidism and was prescribed levo .150. Took it for 6 weeks and noticed I was suffering from insomnia,slight tremors in my hand ,very irritable and felt like I was in a fog. Did bloodwork again and she lowered my levo to .137. After a couple of weeks I noticed I was sweating profusely all the time even waking me up at night,heart palputations and more steady uncontrollable shakes,growing more irritable,gave my notice at work (even tho I loved my job). Just yesterday my husband called 911 bcuz I was shaking so bad...legs arms,hands,and head uncontrollably,my heart was POUNDING out of my chest ( heart rate 143) and high bloodpressure. The ER doctor was reading previous lab results in computer and discovered my PCP was wrong in treating me with hypothyroidism. From the beginning my thyroid was high and she put me on high doses of levothyroxine!! So I have hyperthyroidism AND taking levothyroxine!! Now have me on Ativan to control shakes and lopressor to lower heart rate and blood pressure and yes no more levo!! Now I have an appt with endocrinologist in 2 weeks and I'm worried they will need to remove thyroid.Has anyone else been thru this? If so what can I expect?

0 likes, 8 replies

8 Replies

  • linda187
    linda187 Fenway

    Posted

    The only thing that sounds like this is Hashimoto patients who bounce from hyper to hypo and back again but that is not the case with you.  You need to be informed about all your lab work and keep your own copies of tests.  If you do not have an autoimmune disease or thyroid nodules, and are no longer on levothyroxine, and your thyroid levels should fall when you are off Levo, I don't see why you would have to remove your thyroid.  Keep us posted.
  • Deia
    Deia Fenway

    Posted

    Hi!

    I think 6linda187 is completely right. Don't rush on remove your thyroid. Once it is done you will be hypo for the rest of your life. First, make sure what it is happening with your thyroid and ask to your endocrinologist to take all blood test you can. Take all copies of the blood tests result with you and make your own searches about this decease. After bad experience with my endocrinologist I learned my lesson. Now, after a lot of self searching I know a lot about hyperthyroidism and I can discuss it with my doctor.

    I know the symptoms you are feeling. It drive us crazy. I was diagnosed as hyper 15 years ago and after 2 years taking medicine I was in remission for 13 years and last year it came back much worse with all the symptoms you have experienced. But since your levels get better you will feel better too. Hang on and try to keep calm. Stress will make you feel worse. Everything will be good with the right treatment.

    I hope you feel better soon.

    Please keep us posted.

    • Fenway
      Fenway Deia

      Posted

      I just feel horrible! For 5 months now I've been on levo .150 and .137 while my thyroid was high. When my doctor called me at the hospital and told me she made a mistake in my diagnosis bcuz she misread my labs. All along I shouldn't have been taking the high doses of levo at all....should never have been on meds. High thyroid and levo mixed has put me on such a rollarcoaster! The only thing my doctor did right was to make an appointment with an endocrinologist but not until June 8th! I was never low (hypo) all this time but had me taking the levo to raise my thyroid when it was already high! My joints and muscles right now feel like jello and walking is an effort now. I just hope this endocrinologist knows his stuff and fixes me...just hate this feeling!
    • linda187
      linda187 Fenway

      Posted

      Fenway, did they put you on Methimazole or Carbimazole?  Get a copy of your most recent lab tests done in Emerg and post them here.  What you can do to help your situation is this.  When patients are running hyperthyroid, they lose a lot of vitamins, minerals and amino acids from their muscles through urination.  If you add these back through supplements, your muscles feel better.  You need to take 3,000 to 4,000 mg of Regular L-Carnitine.  This is available in most health food stores or online.  You also need to take vitamin D, 1,000 to 5,000 IU per day, Magnesium 200 mg per day, Omega 3 will help the inflammation.  If you have eye problems, take 200 mg of Selenium or eat 2 brazil nuts per day.  Even patients who have the correct diagnosis of hyperthyroidism do not get told about these deficiencies because their doctors do not know about them and it is not part of the standard of care.  However, my disease improved immensely when I discovered this and added them as supplements along with the medication prescribed by my doctor.
    • Fenway
      Fenway Deia

      Posted

      Hi Deia...still been having severe "attacks"- muscles feel like they won't support me...legs quiver when I stand to do dishes or cook etc- sweats that wake me up soaking wet-high bp 183/92,160/80,177/78 etc and NEVER had issues before, heart rate up in 100s ( this comes and goes uncontrollabley),don't dare to drive and been back and forth to ER depth for EKGS...going tomorrow for thyroid ultrasound and more labs...my dr suspects graves disease now. Just totally and completely frustrated and meanwhile my dr says I can't work now...need to rest my heart. Avoid stress (lmao)....hard to do when I can't bring in a paycheck and my husband is disabled and on a fixed income....bills keep coming in and the stress is unreal....just hoping the ultrasound shows nothing bad and that the bloodwork don't show anything relating to graves disease....got to do some research on this graves disease and see what that's all about. Feeling so frustrated and hopeless!
  • miriam20306
    miriam20306 Fenway

    Posted

    This sounds so like what happened to me, I to have struggled and my endocrinologist got it totally wrong and I had all the sympthoms you describe, hair falling out as well and the shakes, heart pounding and was so irritable and really down.  She charged me $420 per visit to talk about how good she was and that she taught in hospitals etc, oh how wrong I was, I finally decided to go to a Holistic Dr (still a fully qualified Dr) and she did so many tests and it turned out I did have a thyroid problem but not high but low.  9 months on I am doing very well, still get a little tired but the sympthoms has all but gone.   I am on a Whole Thyroid extract that is made from Pigs valve and was what they used in the olden days before the chemicals that hit the market.  It works so darn well, not cheap and you have to get it from a pharmaceutical compound but oh it is so works.   All the best for your journey, having your thyroid out is not needed, they told me that and today I can say I am well and healthy again.

    smile

  • kim76134
    kim76134 Fenway

    Posted

    How did everything turn out for you? The same thing happened to me. I am now waiting to see an endocrinologist. My gynecologist tested my thyroid levels because of my symptoms. She said that I was hypo and prescribed iodine supplements. After feeling awful with elevated blood pressure and heart rate I went to an emergency care facility. They tested and told me I had hyperthyroidism.. I looked back at my records from the gynecologist's lab work. It showed that I was borderline hyper from the beginning! This is very frustrating @

    • linda187
      linda187 kim76134

      Posted

      I would report her to her medical board.  Clearly she is not competent.  Glad you have a proper diagnosis now and got proper care at the Emergency Care.  Plealse keep us posted on your progress.
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