I have hyperthyroidism with bulgy eyes. i want my eyes to go down!!

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Hello, im a 19 year old female. I have been diagnosed eith graves didsease, I absolutely hate it! I feel totally fine. The only thing that i dont like is that my left eye is bulging out. I HATE IT! i want to know if theres anything that i can do or take that can make my eye go down.... i found out i had hyer when i had gotten pregnant. I started losing weight, i lost about 60 lbs... Now i feel like ive gained the 60 lbs back...... i dont know whats going on. I feel like i want to go get RAI done so that way my thyroid can just go away. I hate the ugly looks that i get from people just because my eye is bulging out. It really upsets me that all i do is stay in my room and hide from everyone. I have a daughter and i want to go out and have fun with her but when i do i feel like everyone is just going to be staring at my eye. But i want to know if theres any mediction i can take for my eye or any remedies?????? PLEASSE HELP!!!

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  • Posted

    Hi Crystal,

    I know many people on here know exactly what's going on with their thyroid and TH or TS levels, I have no idea? Seen my endo a number of times and still have no idea and can advise the eye thyroid has an approx 2 year process, where it will get worse and then will be some improvement (dunno how much) in women the eyes bulge more, in men the eye muscles are enlarged causing double vision (which I have) yes it knocks your confidence, yes it's a nightmare but you have to live your life, live it to the fullest and not let this get you down. Easy to say but don't worry about other people (I've had to wear a patch so I can see and walk straight) other people staring is not in your control. Be positive, know it will get better, take either sellinium tablets or 2 Brazil nuts daily, get regular blood tests to try to get thyroid stable. I know better than anyone how tough this is but there are so many side effects with thyroid just try to get as much professional info and also seek help from people on here for natural remedies (diet/vitamins). I wish you the best it go to eye hospital and get checked - there are test studies going on to enquire about.

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  • Posted

    Hi crystal,  I'm so sorry that you are feeling so low and all I can say is that you are not alone in feeling this way.  Graves is a terrible, rotten disease and debilitating in so many ways.  I don't have the bulging eye problem but I do have eye problems - I have the vertical double vision and they feel gritty and tired most of the time.  Many on this forum will tell you to AVOID like the plague having RAI treatment because this makes the TED (thyroid eye disease) even worse !!  I was diagnosed with hyper/Graves in 2013, I had most of the horrendous symptoms including weight loss and went from a size 10 down to a size 6 and after 2.5 years of still being hyper and sometimes hypo, I have only managed to gain 4 to 5 lbs.  Due to the weight loss that I couldn't afford to lose because I was already slim with no excess weight, I look 10 years older than I am !!  This together with still having anxiety and panic attacks has confined me to the house because I, like you, think people are looking at me and thinking how awful I look !!  In actual fact, they probably don't even notice me - it's all in my head but these feelings we have are part of the "nature" of the disease.  I think there are supplements that can be taken to help with the eye problems and I am sure some members on this forum will point you in the right direction regarding this.  In the meantime, try not to get too stressed - stress can be a trigger for hyper symptoms - it certainly is in my case.  

    Best wishes

    Christine

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  • Posted

    RAI is the worst thing you can do for Graves eye disease because it does nothing to get rid of the antibodies that cause this disease.  Some people who had no eye problems when they had RAI developed them 7 years afterwards.  So please – avoid RAI at all costs.  To heal from this disease, you have to become an empowered patient and you do that by taking responsibility for your healing and learning all you can about the disease and how best to heal it.  First of all, always get and keep a copy of any lab results or medical tests done on you.  These will show your results with the ranges for normal beside your results and you are entitled to a copy if you ask for it.  For me, low dose Methimazole was the first step though it only controlled the disease.   The next step was to add supplements.  Hyperthyroid patients lose a lot of vitamins, minerals and amino acids from their bodies when they are running hyper.  So replacing this with supplements makes sense.  Also watch your diet.  A diet of fruits, vegetables and healthy proteins is best.  Avoid the artificial sweetener Aspartame.  Some people do well by eliminating gluten from their diet.  The supplements that worked for me were Regular L-Carnitine 3,000 mg a day (there was a research study done on this showing the benefits for hyperthyroid patients to take this), vitamin D3 gel caps 1,000 to 5,000 IU per day (most hyperthyroid patients are deficient in this and it is a very important vitamin for your health) and Magnesium 200 mg.  Also for the eyes Selenium 200 mg or 2 brazil nuts a day.   As well, some patients have reported improvement with using cotton pads dipped in witch hazel over closed eyelids.  As well as seeing an Endocrinologist to follow your meds and labs, there are ocular surgeons (ophthalmologists who specialize in Graves eye disease) and a referral to one to follow your eyes is important.  The diet, supplements and low dose meds works for most people in helping to get your Graves antibodies lowered and go into remission.

     

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    • Posted

      Is Acetyl-L-carnitine the same thing? Im taking methimazole 10 mg once a day. I want to try witch hazel but im not sure yet. Ive also heard that putting green tea bags over your closed eyelids would help a little. But im going to try with these vitamins.. Thank you so much!!!! 
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    • Posted

      Hi Linda, very good advice, that I will take on board. Thank you for your post. I've had an unstable thyroid for 3 or 4 years now, and serious TED problems with double vision, so just to be clear, you wouldn't recommend RAI in any circumstances?
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    • Posted

      Yes, Crystal, it is the same thing.  (I love LInda's posts smile ) Getting a blender and mooshing up lots of raw veggies is also a good idea. There's loads of recipes online for giving your immune system a helping hand. biggrin
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    • Posted

      Will it be okay just to take Acetyl-L-carnitine by itself or will i need my methimazole? I havent gotten a refill on my medication due to medicade problems and i havent tooken methimazole in about a month... Just want to know if i cant take Acetyl-L-carnitine by itself?? 
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  • Posted

    Hello Crystal:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's Thyroid disease which is the opposite of your disease but both are autoimmune. That means it runs in your DNA or family.

    First of all, I am sorry you have Grave's Disease, I was diagnosed with Hashi's when I was 27 and I am now 54.

    What you are experincing is called Thyroid EYE, and it causes you to look BUG EYED that is a way of describing it, sorry for the term.  It can be decompressed by an eye surgeon/doctor.   You could lose vision in the process.  Ask your doctor for a referal to an eye surgeon who knows aboout thyroid eye.

    RAI was designed for Cancer of the thyroid. It will kill off your thyroid and parathyroid glands and you will then become Hypothyroid which means too low. Please try another option before doing RAI.

    It is a very serious thing.  Hypo is no fun either.  Take it from me, you will gain weight , feel rotten, have muscle aches, lose hair and get no periods and brain foggy, feeling depressed.  Both diseases are awful.

    Thyroid eye, can be dealt with so look into that. You just need the right doctor to help you. Sometimes it happens to both eyes.

    In some people they can try Tapazole a medication to calm the thyroid gland down. You need to ask your doctor if you can have it.

    I know you feel it is bad, but a famous American Actor named Don Knotts, he was a bit before your time, had Hyperthyroidism and he had thyroid eye and he lived a good life and died into his 80's. He always played funny characters and was in many Disney movies.

    Keep us posted on how you do,

    Regards,

    Shelly

     

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    • Posted

      Hello Shelly,

      I havent done or taken any medications yet. My medicade is acting up and i havent got my methimazole refill and im out. I havent tooken my medicine in almost a month.... is it bad that i havent tooken it? I havent seen my doctor.. but my daughter has a doctors appointment Feb. 2nd.. ill ask him then. Is Tapazole the same thing as methimazole or is it stronger? My visison is starting to get blurry but it goes away after a while. Im not sure if thats okay... Also, will it be okay to take just the Acetyl-L-carnitine Medicine by itself or will i need my methimazole? Im not sure.. TIA 

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    • Posted

      Hello Crystal:

      Yes, Tapazole is the same as Methimazole.  So get a refill and get it filled under your Medicaid program.

      Yes, you need to take it to control the thyroid gland so please get back on it.  The vision will get blurry from the Thyroid eye.  You need to go to a special eye doctor  who specializes in thyroid eye or knows about it. Perhaps you can ask your doctor for a referal to an eye doctor.  This is very important to do, so make an appt. for yourself.

      You need both Acetyl-L carnitine and the Methimazole taken at different times.

      Once you are on the Methimazole it should help control the thyroid and you may feel better. 

      Keep us posted on how you feel and what happens.

      Regards,

      Shelly

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  • Posted

    Hi Crystal....

    ive had Thyroid probs since I was 27, after my first baby was born, I've had most of my Thyroid removed, but nodules keep growing....all I want to say to you is to try stay positive as the others have said, hard I know, but no one should ever take away your happiness, and stop you going out with hour daughter....people are very ignorant, it's their problem not yours.....I hope they do sort everything out for you as ASAP , also I would always take someone with you at your appointments, so you don't  miss anything the Doctors say.....Good luck

    Jill UK

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  • Posted

    i feel like my left eye is getting more bulgy... its getting so red and sooo watery. im taking 10m of methamozile a day and Acetylcarnitine daily. I feel like nothing is working. is there any other medication i can take... pleasse help me!! 
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