Misdiagnosed hypothyroid & taking Levothyroxine

Posted , 4 users are following.

2 months ago I was going through a lot of life changes. I am also on a vegan diet.  I was having weird episodes where I would have this throbbing headache which lead to a tingling in my chest and then hard to breathe. It would keep me from sleeping at night and make me extremely anxious. After many nights of this I went to after care and they said I had a low heart rate (resting HR of 43) and sent me to the ER. At the ER they said they couldn’t find anything abnormal with any of my tests including multiple EKGs. The doctor diagnosed me with migraines. He said my TSH was a little off (tsh of 6) but my free t4 was normal so it was nothing to worry about). I had a follow up with my primary doctor who was convinced that it was hypothyroid because of my extreme fatigue following these episodes. She put me on 50 mcg of levothyroxine. My first day of the levothyroxine I had a panic attack that was the worst I ever had - it made my whole body go numb and I was shaking like crazy and my heart rate was over 100. Soon after this she put me on fluoxetine for my anxiety (20 mg). After a horrid week of both medicines I was having horrible panic attacks including waking up in the middle of the night and sitting for hours scared to go back to sleep, labored breathing, confusion and depersonalization, dizzy and lightheaded, and extreme thirst. I stopped the fluoxetine after 6 days due to many hospital visits where they have said nothing was wrong. My labs in between this time said that my tsh was at a normal level (this being before the medicine could even get into my system- it had only been a week). I have now been on levothyroxine for 3 weeks and have had extreme anxiousness, excessive thirst (drinking over a gallon of water a day) and insomnia and restlessness. I went back to my doctor and she took me off of the levothyroxine to see if my labs would stay consistent and normal since there was so much fluctuation the past 4 weeks. Does anyone have any advice/experiences like this where they may have been misdiagnosed and taken levothyroxine? Have you had side effects like this to this medicine? Any insight would be very helpful!

0 likes, 5 replies

5 Replies

  • Posted

    Jen, OMG!

    Yes! What you describe is typical. Thyroid medication can wreak havoc with your system. My experience has been that the synthetic meds (levothyroxin) cause more harm and offer no real treatment. There arr a few longterm studies finally coming out that are showing this.

    The medication is usually started at a lower dose, so as to avoid extreme symptoms, but the levo didn't work for me at any dose.

    Please do read the many posts here in the levothyroxin group, as there are literally thousands of posts from people who've asked and answered similar questions as yours. Also read the insert that comes with your medication from the pharmacy. It’s required by law here in the US, but I don’t know about the UK.

    Your stress levels are probably through the roof, its likely you're deficient in minerals and protein. Try some multiminerals, multivitamin with coblimated Bs and essential amino acids. No wheat, no soy in your diet.

    I’ve tried a vegetarian diet many times, but found it didn't provide enough nutrients, regardless if my efforts. Sorry to say that with thyroid issues, protein and other nutritional deficiencies make a huge difference. 

    Honestly, I’d  try some diet changes and stress reduction to see if you can get your thyroid back to normal. Worth a try.

  • Posted

    First of all I would NEVER let a primary give me a thyroid medicine..I would first go to a cardiologist and have my heart checked out and if everything is okay then go to an endocrinologist to see if everything is okay there..a primary has no business diagnosing and treating a thyroid issue..that's my opinion. That's awful..prayers and hugs..

    • Posted

      Ruthie, you make a good point. I’m not sure I’d trust a cardiologist to catch a problem.  My experience has been that nothing gets diagnosed until the disease is in advanced stages.

      Unfortunately, many health conditions tend to accompany thyroid disease, including anxiety and heart problems. Unfortunately, thyroid medication can cause or worsen these and other thyroid symptoms. And in fact, a major reason doctors are hesitant to prescribe thyroid medication is the very high rate of medication induced heart disease. Hence, many doctors will send thyroid patients to a cardiologist for testing prior to prescribing thyroid medication.

      As for GPs treating thyroid disease. It depends. I’ve found tge foctors trained in Eastern block countries-Russia, Romania... are extremely knowledgeable on thyroid disease. I’d  take them any day before I’d go to an American trained endocrinologist. 

    • Posted

      Yes there are many conditions that go with thyroid issues..and anxiety can be very chronic with thyroid. There are many stellar endocrinologists in America as well as Naturopaths..have you ever seen any? I have a wonderful one who has fiinally gotten me healthy. I would definitley go to a cardiologist as a starting point because of so many heart problems that can happen because of thyroid issues and can be detected. To each his own thoughts.

    • Posted

      Oh I forgot to mention Jen..are you taking a generic drug? I was on levothyroxine and could not tolerate it..switched to synthroid and a different story completely..just a thought..

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