Stopping levothyroxine

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after taking levothyroxine for 3 years,i am considering stopping medication for 1 month due to a new symptom of high histamine causing swelling of eyes. some have said it is possibly causing this reaction where my endochronolgist believes it is part of the autoimmune disease. any thoughts or experiences for advice?

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  • Posted


    first im sorry your eyes are swelling . Your endocrinologist is right about a connection with thyroid and eyes - a condition called TED or thyroid eye disease, which gives symptoms very similar to hay fever . IF IT IS TED its really important to see an opthalmologist as the disease needs managing and start taking selenium suppliment really helps.

    When you say high histamine what do you mean? have you had this tested?

    i would be careful about stopping your medication if the endocrinologist isnt suggesting that. i am assuming you are taking levothyroxine because you are hypothyroid? if you have an autoimmune condition causing that then stopping medication altogether will it worse. what is your endocrinologist suggesting?

    i hope this is of some help and that you get to the bottom of what is causing your eye symtoms

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    • Posted

      thanks for the advice the swelling is different than in graves disease. thee eyes are bright red and the eyelids and surrounding skin are swollen red and itchy just like an allergic reaction. after being treated by opthamologist, he refered me to an allergist. after testing, it was found that i am not allergic to any environmental/ food , my histamine levels are high in the blood both the allergist and endonchronologist believe it is from my thyroid causing an auto immune response. i have been on antihistamine eye drops 2-4 times daily and histamine medications doubled for several months with really no improvement. my PCP suggested a slight chance of an allergy to levothyroxine i have been lowering my medication for 2 years because it seems my thyroid function is improving. i was diagnosed with thyroidtoxicosos originally and currently do not have any antibodies present . he said a few weeks off the medicine would help my eyes if it is truly an allergic reaction. otherwise next step is a series of injections of an anti inflammatory by the allergist. very complicated. very frustrating thanks for your help

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    • Posted

      please talk to your doctor. DO NOT STOP TAKING YOU THYROID MEDICINE. I too had a severe allegic reaction to all synthetic thyroid medication. My first symptoms was a problem taking a full breath of air. i had panic attacks as a result of not being able to breathe and my all my joints began to swell and hurt . I LITERALLY NEEDED A WHEELCHAIR. My endocrinologist said it wasn't related to the medication. I believe it was and even though i told her numerous times. " THIS SYNTHETIC THYROID IS KILLING ME". She absolutely refused to listen, and suggested it was something else to contact my GP. I DID! We ran lung function test, where we verified that I was not able to take a full volume of air ( hence the panic attacks that landed me in ER TWICE? Then i went to a rheumatologist thinking i could have arthritic rheumatoid arthritis. this was not the case. My GP Who knows me best suggested we had nothing to loose by trying other thyroid meds. This ofcourse is frustrating in that changes could not occur overnight. I even took TIROSET which is a pure version of the synthetic thyroid. NO change with any of the synthetics. it was a horrifying stressful and physically very painful time. That was until we went with the NATURAL DESSICATED THYROID MEDICATION ARMOUR, THIS MEDICATION HAS MADE ME FEEL ALMOST LIKE MYSELF AGAIN.

      my thyroid was surgically removed, because I HAD A 50% CHANCE OF HAVING CANCER. I AM ALSO GOING TO THE BEST HOSPITAL IN PHILADELPHIA. I have learned that endos make a huge amount of money from PHARMA RESEARCH , a good reason why they push the synthetic thyroid. whatever you do. always consult with your doctor and use them to guide you. YOU ARE YOUR BEST ADVOCATE SO BE INFORMED and ACT ,NOBODY KNOWS YOUR BODY BETTER THAN YOURSELF. PATIENCE AND PERSEVERANCE

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  • Posted

    Hi - please don't stop your medication as you will become very hypo in a short time and it takes months to get your health back. The endo is correct in that you are prone to other auto immune diseases once you are diagnosed with thyroid problems. Stopping Levo is not the answer though. Have you tried just ordinary anti-hystamines ?

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