Hyperthyroidism getting the best of me. What should I do?

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I was diagnosed with hyperthyroidism in January 2017. I was administered a radioactive iodine pill in late March. Almost 7 weeks later my thyroid levels are still really high and the thyroid itself is still as large as it was when this all started. A few days ago my endo put me on Methimazole 20mg 2x per day. They made me feel worse that i was feeling before. It seems as tho my rapid heart rate has increased. I was previously on propranolol 20mg 3x a day. I have really bad days and sometimes it seems as though I will not make it through that day. I am really discouraged and it seems as though my treatment plan is a long drawn out process. I actually began to get sick in December 2016 and now it is almost June and I am no further along than I was I. December. I'm scared a lot because I stay feeling sick a lot. I haven't a support group with family and friends. I've gone to see a psychiatrist because literally I thought i was losing my mind. I was previously on alprazolam and tempazapan for panic attacks brought on my the disease. To me they were treating my symptoms and not thee condition. I could be wrong because at this point I really do not know anything. I need at least one person in my corner. Someone who can help encourage me. Someone who will help me understand all that i am going through. I need your help please.

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  • Posted

    Perspective babe .

    i know you're feeling crap. I have Hyoeractive, and thyroid Toxicosis , with Graves' disease.

    ive been on meds for over a year, and still can't get my levels down. It's an awful disease. I empathise with the crazy feelings, anxiety and palpitations

    But you're expecting too much too soon.

    its a process. Finding what works, what works well for you, and no one cj wave a magic wand. I'm afraid. 

    Im astonished they treated you with RAI so quickly , it might have been better to get the thyroid a bit more under control first, then treat the bigger symptom .

    ask about. Thyroidectomy .

    i have tried so hard to get well, I don't want RAI, so am having the surgery.

    best of luck. You're not alone.

    but try to be patient with your illness.

    it really won't vanish overnight xxxx


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  • Posted

    Hi Corine, are you sure it wasn't just an uptake scan you had? I have been led to believe that the radioactive treatment kills off your thyroid but I have not had this so I could easily be wrong.

    I was diagnosed in February this year and was very lucky to catch it early and start treatment with 30mg of carbimazole daily ( this is the Aussie version of methimazole I believe) . I am now euthyroid but still have the racing heart but no where near as bad. I had to cease my meds a few days ago as I had many symptoms of hypo.

    It was my weird thoughts and anxiety, along with weight loss, rapid heart rate, high blood pressure and hpertonic reflexes that tipped my doctor off that he needed to check my thyroid initially and I really sympathise with you as no one but another sufferer seems to really understand how bad it gets. It has taken over three months to stabilise my levels on medication and I still have a faster heart rate than before I had a thyroid problem but my anxiety and mood disturbance improved a lot when I found out I wasn't going mad. It is a slow journey getting back to normal and from what I have read it can take quite some time for things to improve, again I was really lucky to get treatment when my levels were still fairly low. Try to keep in mind things will improve and maybe ask your doctor if you can go back on the propanolol if you are getting palpitations. I can't tell you when you will feel better just that it does take time. There is wonderful support to be had here and many who are much more knowledgeable than me. Some people here know about suppliments and tinctures that can help with the hyper symptoms. I feel for you as I can remember thinking I would never feel normal again but now I almost do feel normal. Good luck and take care and hugs from a fellow sufferer Jeni

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  • Posted

    Corine, I am going to email you privately.  For myself and others with this condition, what I have learned is that a patient needs to become empowered in order to get best results.  That means learning all you can about your condition, always getting and keeping a copy of your lab reports and learning what those values mean and generally learning all about your medical condition from many sources.  For myself, I was fortunate to be diagnosed early because my thyroid was being followed medically for other reasons so when labs started going off, it was caught early.  However, it took three months to be fully investigated before I was diagnosed and my condition worsened, although not as bad as some who have posted here.  Even so, though my FT3 and FT4 excessive thyroid hormone measurements were brought under control quickly, my TSH remained at less than 0.001 for two years until I took other steps.  That means the medical treatment with Methimazole was able to block the excessive thyroid hormone being produced but my antibodies that were attacking the TSH receptors continued to be elevated until I took other steps.  Today, my antibody levels are normal, my lab results are normal, I am on an extremely low dose of Methimazole (2.5 mg) 3 or 4 times a week to prevent a relapse due to stress.  It was stress that triggered my disease in the first place, I believe.  So hang in there, you CAN get well and the people on this Board will support you in your efforts.
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  • Posted

    Hi , it took 5 doctors appointments, 3 prescribed courses of ant-biotic & 1 visit to A&E to get my diagnosis, eventually my Gp got blood tests, I've had 2 visits to see specialist privately & prescribed cabrimazole 40mgs daily. Feeling much better, but GP warned early days, anxiety seems to have lifted along with several other symptoms some really bad. Fatigue still remains, body feels like a lead weight, although weight loss cheers me. I'm not an over inquisitive person & so far happy to go along with what specialist advices. I'm conscious tho the journey has only just begun.

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  • Posted

    If I were you .. I think I might be glad that RAI didn't work.

    As , it is when successful , irreversible !

    ... and more so , is surgery .

    My cousin underwent surgery many years ago and since then has been extremely ill due to never having been given the correct doses of thyroxine by her doctor who is completely in the dark regarding thyroid diseases.

    My sister is on her last legs because of ignorance and neglect by doctors

    My Mother , grandmother ,sisters have all have or have had Thyroid disease and nieces Also ...

    I have Graves disease ... but I made up my mind when my doctor proved he knew NOTHING about thyroid disease , to self medicate and for the last 18 months or so I have read and digested everything I could find for natural solutions to my disease .

    In my minds eye I decided that my thyroid , which had taken care of my metabolism and my mind and body all my life was now being attacked by my immune system ...and that I had to sort my immune system ... NOT kill my thyroid which was in essence .. the victim!

    I started to take 20mg Carbimazole prescribed to me by private Endocrinologist .. who said he would start with a high dose and lower it slowly ..

    till we reached a level that lowered the hormone .

    I went from 20mg to 10 then 5 mg

    And in a few months I was in a Euthyroid state .. I weaned myself off Carbimazole

    With a natural supplement Called ..regular L Carnitine ... that worked too !

    So all I had to do then was top my body up with all that it had lost over a period of God knows how long .. that I was running on high and with no fuel left to keep my body

    Healthy and well ..

    That took me quite a while to do I made myself a list of things that would strengthen my immune system and make it contented so that in turn , it would leave my thyroid in peace and allow me to feel better .

    When I first had my Graves attack and thyrotoxicosis I was in a bad way .. my symptoms mentally and physically were driving me insane ..

    many people end up being incarcerated in institutions with mental illnesses .. which turn out to be Thyroid disease !!

    So I knowvvery well what you feel like and I would like to tell you that with a bit more patience a lot of resting and good fresh food

    Loads of veg ... no dieting !

    Don't think that's really necessary .. though loads have gone gluten free with added good results .

    Get your bloods done .. ask to get the results printed as they are yours and come back here and type them out with figures in brackets as they are the ranges specific to your lab .

    And lots of good folk here will explain your next step ..

    Take heart and try to be strong though I know you feel you are on your knees Luvvie ... but resting will help that

    As Linda says ... Empower yourself 🦋

    ....and learn all you can

    Talk soon

    Luv mx🌹

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  • Posted

    Hi Corine461971

    I completely understand how you feel, as I've been where you are. I'm still in the rut of it too, but seem to be doing some better. I still have my heart palpitations, so that keeps me on edge some. I will be so glad when they are gone. They scare me to death. I have had a lot of anxiety and panic since I went into hyperthyroidism from being hypothyroidism for 10 years. I think my levels got all out of wack after I had my second baby. I'm still not totally regulated out. Just keep on the doctors and if you don't feel any better, demand bloodwork and answers...that's how I found out I had hyperthyroidism. I felt awful. Sweaty hands/feet when waking up, using the bathroom a lot, couldn't sleep, anxiety, panic, etc. I'm on Zoloft and xanax now...it's nuts. I know how you feel though...just stay positive and pray about it.

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