Don't know where to start

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So, I was diagnosed with hyperthyroidism about 2 years ago. Diagnosed with graves disease about a year ago. Right now I am taking PTU (propylthiouracil) and I do 350 mg in the morning and 400 mg at night. I just kind of what to know where I am supposed to be in order to be able to get my thyroid removed. I don't know exactly where my levels are at and haven't really talked to my doctor. I'm just so confused by all this thyroid stuff. I need a better understanding! I'm also taking atenolol for my heart rate. I am not able to to do the radioactive iodine because I'm allergic to iodine / shellfish and they don't want to risk anything I guess. So that is out of the question. Ugh! I'm just so frustrated and need people I can talk to about this! Anything will help!

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  • Posted

    Hi Kate.. It's so confusing to many. I have delt with this and all the complications to just feel normal. Stress can add to a lot of added issues. I find if I take time for myself every day to relax let it go I can deal with my health problems better.
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  • Posted

    Yeah, ive noticed that I do carry a ton of stress and anxiety like a lot of people do when they are dealing with this. I wish I could just feel better. I know everyone does.
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  • Posted

    Katelyn, I don't know exactly what country you live in or about your doctor.  I live in the USA and my endocronologist told me when I was diagnosed in January 2013 that I had hyperthyroidism with Graves.  We did my bloodwork every 3 months to try to get my levels back to a normal level because the goal is to come off of medication ENTIRELY and have your thyroid function normally on it's own.  I was also on atenalol for a racing heartbeat and anxiety.  We kept decreasing my meds and got to a point in October of 2013, 1 year later, where now my Graves became active in my eyes to the point of my left eye had a puffy and stary appearance and I got double vision.  That concerned us both because we didn't want this eye situation to get any worse.  We decided to have my thyroid removed in April 2014 because my thyroid levels were not going back to normal on their own and it is NOT RECOMMENDED to be on thyroid meds for a hyperthyroid long term.  It can damage organs in your body long term.  Radioactive Iodine was not an option because that aggrivates Graves and since I was already experience active eye problems, surgery was the only option.  I like that better anyway because then it is out!  RAI slowly kills your thyroid and that takes time.  I think the Graves responds to the immediate removal of the thyroid and calms itself down quicker versus a slow death of the thyroid with RAI.  The thyroid removal was a breeze.  I wish we had done it sooner before my eyes changed because maybe I would have never gotten the swollen eye and double vision.  Since the thyroid reacts to the Graves and the thyroid is being attacked, there is a tricky connection to the eyes and the thyroid when it is hyper if you have Graves.  The doctors have never figured out why that occurs.  Also, just because you have Graves with a hyperthyroid doesn"t mean you will end up with any eye issues from it.  It could never happen or one day you could start seeing changes in your eyes.  If you start to see those changes, get your thyroid out.  I went to 2 opthomologists when my left eye started getting puffy and strange and they said I had allergies.  I didn't agree with them but I wasn't the expert.  It wasn't until 4 months after their diagnosis that I developed double vision and I decided to see an Optho in another city who specializes in Graves.  He said he would have me take prednisone for 2 weeks and usually that knocks out the swelling if it is caught in time and stops things from getting worse.  It didn't work.  It was too late.  Now, 3.5 months after having my thyroid removed I am doing fine, thyroid wise, but am patiently waiting to see if the appearance of my eye will change and also if my double vision will get better.  My best advicxe to you is IF you see any changes in your eyes, see an Opthomologist who specializes in Graves disease.  You could stop a problem in it's tracks long before you have a problem like me.  I didn't mean to scare you with all this information.  I am just trying to help you be aware of some possibilities.
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    • Posted

      That is a lot more information than I have known. Thank you. I haven't noticed anything in my eyes that has changed. Thank goodness. I'm sorry for what you have had to go through. Yes I'm leaning towards getting it removed all together instead of staying on PTU. I know the long term effects, but it really does scare me. I live in the USA as well. I'm 20 they found this all when I was about 18. Its a scary thing. sad
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    • Posted

      THANKX Kate.. Appreciate the info I have double vision and it is crazy .by the end of the day everything I mean everything even the food on my plate wearing one of my 3 pairs of glasses is a big blob. I may loose my drivers liscence.

      i suppose it's all good we know Van Gogh had poor vision and look at the beautiful art he painted. He took lemons and really made spendy lemonade..

      CHEERS

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    • Posted

      Hi 

      So sorry u have this at such a young age. Go with UR internal instinct listening to UR inner voice about whatever decision u make.

      it is scary I understand .  u r so brave .

      CHEERS biggrin

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    • Posted

      Wow, thank you for being so encouraging. It means a lot to me. Seriously. I know I can only decide what I do. I just wish I had more people to actually talk to about this and discuss my options further. I'm going for the surgery cause like I said I'm allergic to iodine and I don't wanna be on PTU for the rest of my life. 
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    • Posted

      Great decision.. U will do so much better.. That iodine is a a nasty issue for diabetics too.

      for a support group ask the hospital for info on support groups in UR area, 

      u could get lucky and meet some on this forum. Living near you.

      Spread the word in discussions with many groups.

      Actually a few yrs back I got together with a few in my area from a online forum. 4 people in the same state in the US with the same issues. We meet for lunch occasionally. Nice to meet ppl face to face u meet online..

      Good things do come out of illness. Next we r planning to meet at a casino,fun and play time..making our significant others tag along. LOL

      Good Luck keep me posted. 

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    • Posted

      Hi Katelyn,

      My daughter is turning 19 in a month.  She was diagnosed with Graves at 15 years old.  Over the years, she had a variety of symptoms that was somewhat kept stabled by being on antithyroid medication.  However, the meds slowed down her metabolism so much, she had trouble keepin her weight down, even though she ate a healthy diet.  I have spoke with many docs after this side affect...to which research has shown that young people seemed to have to problem when they are on Tapazole even if they are not hypothyroid.  Needless to say, my daughter was not happy, in addition, her lab result was fluctiating all over the place, and we were always increasing or decreasing to chase after that perfect dosage.  In this forum, you will read many who has tried L-carnitine or acetyl carnitine.  After so many years without sound advice from her physician, I tried to help my daughter with many different supplements.  Finally, I gave Acetyl L carnitine a try...started in February this year.  As of this morning, all her lab results came back showing she is within norma range.  This has never happened in the 4 years.  She is on the smallest dosage of Tapazole (1/4) pill a day and 500 mg of carnitine.  In a few weeks, we will be reducing it to 1/4 pill every other day...until she can be off it completely.  If you are a least bit interested to kow more about this , please feel free to message back.  Best of luck!

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  • Posted

    I will encourage you to say that having my thyroid removed was the easiest. It was done on an out patient basis(23 hours for the hospital stay). They only keep you overnight to monitor your calcium levels. I went home and had no issues. In 2 days I was back to my normal routine of walking 5 miles a day. Just no lifting was allowed. I feel great and have lots of energy. Atenalol is no longer necessary since my thyroid is gone. The Dr took it all out. None was left because if part was left, it could still aggrivate my eyes further. I take 100mcg of synthroid a day. Just a small pill in the morning. I am now hypothyroid since my thyroid is gone. The synthroid replaces the hormone that a normal working thyroid should have emitted. I will take synthroid for the rest of my life but it is worth it. I also dropped about 5 pounds on this since it has boosted my metabolism. I live in Alabama. It was nice talking to you. I am 53 so being in your 20's is a blessing. Take care.
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  • Posted

    Hi, Katelyn and others, I was diagnosed as hyperthyroid in 2008, at age 60.  My TSH was very low but my Free T4 was barely above the normal range, so the doctor didn't do anything right away.  He wanted me to come back in 3 months but I was confused and didn't make the appointment.

    I have always had double vision since I was in my teens, and I had eye muscle surgery to correct it when I was 17, then I was given prisms in my glasses when I was thirty and my double vision got worse.  Less than 6 months after being seen for the hyperthyroid problem, my double vision got extremely bad, so it was impossible to have strong enough prisms to correct it.  I was sent to a neuro ophthalmologist who diagnosed the Graves' Disease (GD).  I was told that the eye muscles have the same protein as the one in the thyroid that is being attacked by the immune system in the GD, so sometimes both get attacked.  This isn't done by the thyroid hormones, but by the autoimmune response that defines the GD as separate from simple hyperthyroidism.

    So, I started seeing an endocrinologist in 2009.  He wanted to do RAI because back then they didn't understand that the eyes are more likely to get worse with RAI than with keeping the thyroid.  

    I refused to have my thyroid destroyed either by RAI or by surgery, and I'm not sorry I did.  I think they still don't know enough about GD or the thyroid to always supplement the thyroid adequately for all types of people after destroying it.  There are people who have "central hypothyroidism" who have low TSH numbers and low T4 and T3 as well, but the doctors make excuses saying the TSH test is the only one that is really accurate.

    Anyway, I was put on Methimazole (MMI) and a beta blocker because my heart rate was very high, but I was able to go off the beta blocker and have a decrease in the MMI after the first few weeks, I can't remember now, but it was no more than two months, maybe just one. Anyway, the MMI just made me feel worse.  The Endo decreased my doses for a year and after that I just decreased my dose on my own until I was off it, and I stopped seeing that endo.

    After a pleasant summer in 2010, I reluctantly agreed to go back to an endocrinologist.  That one said the first one had made me hypothyroid, and he promised he would be very careful not to let that happen.  He was better, and I was suffering so much taking the MMI that he let me have one day a week taking 1/2 pill less.  The next test in 3 months my TSH went from 0.01 to 2.53 (I think) then 2 months later, it was 5 something, and above the normal range, meaning hypothyroid.  I started managing my own MMI after that, and informing the doctor how much I had taken.  I stayed in the normal range for a little over 2 years on the MMI and was borderline hypothyroid when I stopped it altogether and Endo #2 said I did the right thing.  

    He wouldn't prescribe a supplement, though, and 5 or 6 months later I went out of state to Endo #3.  She was practically the same but she told me that the TPO antibodies were for Hashimoto's Thyroiditis (HT) [autoimmune hypothyroid] and they were high in my blood test. They had been tested high before, but neither of the first 2 Endos explained what it meant.  So, I have both types of antibodies acting on the thyroid in different ways.  The HT was slowly destroying my thyroid and the GD was stimulating it to produce more hormones.

    Endo #3 was also an 8 hour drive away, so she agreed to let my PCP [primary care physician] run the blood tests and thinking she would see me in a year, wrote a letter for me to show my doctor.  Endo #2 dismissed me as a patient because I went elsewhere for a second opinion.  My PCP looked at the letter with the last blood test results and said I was hypothyroid because my Free T4 was not very high and my Total T3 was borderline low, and he thought, like I did, that I should be put on supplements.

    I was on Liothyronine [LT3] for about 4 or 5 months being tested for the thyroid hormone levels every 6 weeks, and my TSH was actually improving by moving up in the range until the very end when it went back to zero again [after having increased the LT3 and started Levothyroxine 25 mg [LT4].  Then, I had to go to Endo #4.  I had to go off both of the thyroid hormones.  

    I found out about the Carnetine at that time, but couldn't start it without the Endo's approval.  I asked, and he said he didn't think it would help but it wouldn't hurt, so I started taking it, getting it from a health food store.  I think it helped keep me from suffering too badly while going off the thyroid supplements.  

    I still felt awful, but my labs were in the normal range again, so the Endo said, "It's not the thyroid" and sent me back to my PCP.  He put me on Wellbutrin, which really turned my life around again.  I have felt quite well ever since.  I still take the Acetyl-L-Carnitine, Methyl B12, and Methyl folate, which I believe also help.  So far, my lab work has been in the normal range ever since I started taking the Carnitine, at least.

     

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    • Posted

      Hi Fern...

      that is quite a story. Sometimes things get so convoluted u need a score card to keep track. 

      The final outcome of all UR struggles is positive and so happy UR feeling better. 

      So happy to hear that welbutin is bring up UR mood..biggrin

      CHEERS

       

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    • Posted

      Yes, sorry I'm so long-winded.  It is hard for me to keep track of what I was really trying to say, too.  

      I just wanted to point out that we never know what different approach is just around the corner, like the RAI once recommended with thyroid eye disease, now not so.

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    • Posted

      UR story is very informative. Glad u took the time u did to detail the ups & downs.. I just feel rotten most of the time mabe just counting too much on supplements & things. I have very bad eye sight just is frustrating. It's not going well. So what is really happening no one seems to have a answer. It's the not knowing that bugs me.

      TC&GBconfused

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    • Posted

      As far as the eyes go, I am mainly nearsighted and got bifocals about the time I turned 60 which was also about when I got Graves' Disease.

      After having a horrible time with my eyes, I finally devised what I call "blinders" on my distance glasses to separate the double vision confusion into separate "screens" so I can look with either my right or my left eye as I choose without the doubleness from the other eye getting in the way.  The blinders attach at the bridge of the glasses (over the nose) and cover about a fourth or a third of each lens near my nose. I use them for driving.

      Recently, I talked the eye doctor into giving me reading glasses to give me a sharp focus with each eye and with the maximum prism and magnification which I need to have single vision at about 10 inches from my nose.  Having at least some time when I can see clearly with one image and two eyes working together has made me very happy.  It also helps me work with my eyes to get them to extend their alignment to single vision at another few inches to normal reading range. [I am in the US and not used to using metric system.]

      I wear them most of the time when I'm not driving, because even looking through them at greater distances I find they make my vision turn into a pleasant blur like an impressionistic painting without the confusion of seeing two very clear images meshed into one.

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    • Posted

      How lucky u r to find a good solution for double vision. THANKX for sharing!

      I had excellent eye sight. Now by the end on the day everything is double even with glasses. It's very frustrating I was a landscape designer. Now the landscape is always one big blurry painting like Van Gogh. He had Cataracts  and painted to reflect his vision. That's how the impressionist period really began. Now surgery to remove and replace the lenses r done.

      So I guess it not all a bad thing. I have three different pairs of glasses for different tasks. None work for very long. I'm happy to stretch out my IPad to see better. Some times I find that stretching out words on prescription bottles do work as well as the IPad. LOL IT becomes a habbit and I find myself unconsciously stretching out words in any thing I can't see. It only work on the IPad..cheesygrin

      I am really impressed with the blinder technique u described. I have a check up with my eye dr coming soon. I will deffinately get the ball rolling on UR blinder design. It's gonna be tricky to describe. I have seen something like u have described used for laser repair gone bad, helps restore vision . The glasses with horizontal louvers. Right? Do I have this correct?

      Thanks so much..it would be so nice to see clearly all the time other than a few hours in the am. I could even deal with a little pleasant blur..eek

      have a great day..exclaim

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    • Posted

      No, it's not like horizontal louvers.  I posted pictures on another forum which you could google it is called Daily Strength written as one word, and if you google my name along with it, "Avoiding Double Vision" and TED for thyroid eye disease, you might get right to it.  Or, if you get to anything with my name on it, click the name and you would get to my page; from there, click "photos" and you would see what I have posted [shared publicly].  I also commented on another topic "problems focussing" in which I describe my first attempts at blocking my double vision.  I can't provide the link here or it would stall posting this comment.  My name is Fern RL there,

      Do you have any bulging of your eyes in addition to the double vision? That is more typical of TED, but what I didn't have.

      I also suspect I am a carrier for primary carnitine deficiency which is fatal in newborns with both genes matching for it, but only causes symptoms some of the time for carriers.  I believe that taking carnitine supplements helps with the double vision as well.  It's a muscle thing, and involves how fat is transported to cells for energy.  The symptoms can be the same as for hypothyroidism.

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    • Posted

      Thanks for the info on UR post. Will ck into it. 

      I don't have bulging eyes either.. Very super sensitive to light.

      i can't wait to see the eye glasses. 

      What can u be I be a carrier for carnitine is there a test for that or a family member ? I have taken L- carnitine supplements for a few years now, doesn't really help my eyes. It's like clock work every day by late afternoon everything is blurry and everyone has four eyes two noses and a double mouth.. 

      Have a a good day!biggrin

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    • Posted

      When I learned about carnitine on this forum through Linda, I researched on the internet about it.  I had also had a general DNA test done by 23andMe before they were investigated by the FDA, but the information about the gene SLC22A5 wasn't on their reports anyway.  I just learned about it and searched it on my raw data.  I don't know for sure what it means but I see that there is a difference in what I inherited from one parent and what I inherited from the other.  I take Acetyl-L-Carnitine 500 mg 2X daily.
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    • Posted

      Oh ok I see what u mean.found a couple of UR posts but  nothing on a pic of the glasses. I didn't sign up. Thanks anyway. That sounds complicated and glad u were able to figure it out thru research. THANKX for the info. Have a good evening.cheesygrin
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