First hospital appointment

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Hi, I had my first hospital appointment yesterday after being diagnosed with Hyperthyroidism a few weeks ago.   Got my lab tests (T3 9.8, T4 21.9 and TSH 0.01).

Am being tested for Graves disease now.  Also she believes that this has now affected my eyes, which I believe it has too.  Over the last few weeks my vision has become really poor, also puffy eyes, watering eyes etc.   This is the bit I feel scared about.  I had a feeling she would say about my eyes.

If feel so scare with all this.  

 

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  • Posted

    I have my appointment today that decides what treatment plan and I am nervous too.

    Good luck

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    • Posted

      Hi Patricia.  Good luck with your appointment today.  Hope it goes as well as can.  Take care
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  • Posted

    I have Grave's and hyper.  The main thing is to get your TSH back to normal.  My eyes did bulge. my right eye bulges more.  It sucks.. Im just glad, i got it under control.  now that my TSH is between 1-2.  I don't know but my vision is stable.  it's worst i needed glasses but this year my optamologist didnt need to change my glasses prescription.  if you do have graves the worst thing to do is take RAI.  

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    • Posted

      Hi - sorry to hear about you.  This whole illness sucks doesn;t it.  My eyes ache alot.  do the eyes go back to normal?  I have to wear glasses for reading, and have only just been to the opticians to up my strength - my vision has just got worse over the last few weeks. 
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    • Posted

      Not necessarily if the eye disease is inactive RAI should not affect it. I had RAI in February and had eye disease, there have been no effects other than feeling good and no medication required..which after 25 years of rollercoasting Graves relapses is miraculous!
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    • Posted

      unfortunately my eye disease is active, hence if my TSH < 0.  Just a personal choice.   I wound't get near RAI. Heard lots of bad things about it from others who had it.  My endo did want me to get into RAI though she tried to talked me into it.  I'm glad youre doing fine with it.  You're the first one i know who didn't have side effects on it.  Since they took off your thyroid thru RAI aren't you still taking meds like hormones to replace hormones your body can't supply anymore?

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    • Posted

      i forgot to mention i got referred to a Grave's disease eye dr.  She told me in order to get my eyea in control my TSH needs to be stable by then they could fix my eyelid if it's not closing properly(my eyes ok, they just check pressure once a year).  Also smoking and if you're near people smoking cigarettes is not good for Grave's disease patients.  It makes it worst.  So I made my husband quit

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    • Posted

      No my TSH is still on the low side but better,  no medication required. I just feel so much better. Due to several severe relapses, I cannot risk further relapses with the risks to my cardiovascular system, so definitive treatment was my choice after much soul searching. I wish everyone good luck with their treatments.
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  • Posted

    Hi molis

    I'm having hyper test results but with hypo physical symptoms. My TSH is 0.004 but my other #'s are within range. DR. ordered radioactive iodine uptake test next week. 

    Are you seeing an endo? I'm dealing with PCP but today seing a thyroid specialist 'Do you feel hyper? As for the eyes, this is my greatest worry also. But I did read that most eye symptoms are not severe and spontaneously resolve in something like 6 - 18 mths. Although we do read may different opions on all of this on the Internet. Even some doctors have different ideas. 

    I'm sorry I can't offer advice but just support. Please post your next test results. I'll post the result of my DR visit today. I have to see an ENT specializing in thyroid because Endo visits are booked until January 2017. 

    Hang in there :-)

    hugs. will talk later 

    Jeannie 

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  • Posted

    Hi Molis,

    When you post labs to this Board, is helpful if you can post the ranges for normal for your lab beside your actual results because each lab differs in this regard.  It is obvious from your TSH alone that you are hyperthyroid and with the eye symptoms, most likely you have Graves.  This is usually confirmed with a thyroid uptake scan and testing for Graves antibodies and inflammatory markers.  Your values are very similar to what mine were when I was diagnosed with Graves in 2007.  I am currently in remission now with all labs being normal.  My eye problem is mostly dry eyes and I do have to use drops frequently.  Also during my course of recovery, my ophthalmologist put collagen plugs into my tear ducts to keep more moisture in my eyes and this sure helped.

    I was placed on 10 mg of Methimazole daily at the time of diagnosis and while this normalized my Free T3 and T4 immediately in the upper range of normal, it did nothing for my TSH which remained at less than 0.001 for two years until I took further action on my own.  I came across a research paper by an Italian endocrinologist, Dr. Salvatore Benvenga, about the benefits of hyperthyroid patients adding Regular L-Carnitine 3,000 to 4,000 mg a day to their treatment plan.  All patients in the study benefitted from this.  Their symptoms improved and if they had thyroid storms, they were less severe.  Not too many doctors will pick up on this even though it was a scientifically valid study.  Before starting the Carnitine, I got my Total and Free Carnitine levels tested and I was deficient in this amino acid as are most hyperthyroid patients.  That’s because when they are running hyperthyroid, they lose a lot of vitamins, minerals and amino acids from their muscles and bodies through urination and I found that replacing these along with taking prescribed meds made a huge difference in my recovery.  Vitamin D is especially important and I was deficient in this and though not deficient in Magnesium, was at the bottom of the range so I added these supplements to my plan.  Also take Omega 3 and Curcumin.  People who have had severe eye symptoms benefit from eating 2 brazil nuts a day or taking 200 mg of Selenium.  Soaking cotton pads in witch hazel and placing them over closed eyelids also helps eye symptoms.  I experimented with different types of Carnitine and found one type that really improved my TSH and lowered my antibodies.  I have been doing the supplements since 2009 and everything changed for the better then.  Currently I am on a very low dose of Methimazole (2.5 mg every other day).  I can probably stop this but I fear a setback so I am reluctant to.  My TSH, Free T3 and Free T4 are all normal in the middle of the range so there is hope.  Please keep us posted on your progress.

    With the eye symptoms, it would also be helpful to ask your doctor to refer you to an eye specialist who treats Graves eye disease.  

     

     

     

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    • Posted

      what are your plans in remission? are you still going to take carnitine if youre off methimazole?  I'm right behind you with this TSH getting stable

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    • Posted

      I take 500 mg of Regular L-Carnitine on the off days I don't take the 2.5 mg of Methimazole.  I could probably stop the Methimazole altogether but I work in stessful surroundings and feel more secure taking this low dose eventhough all my labs are normal including TSH.  Everything else feels okay.  I see my Endo beginning of November.  See what he says then.

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    • Posted

      HI Linda

      Do you know if the L-Carnitine would work without the anti-thyroid meds? Just wondering. Also - I go for radioactive iodine uptake next week. Is there anything I should know about side effects?  Any tips on diet for the week? I know I can't have iodized salt or iodine but everything seems to have salt.

      Thanks 

      Jeannie

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    • Posted

      Regular L-Carnitine works better than meds on patients who are hyperactive because of Hashimoto's.  For Graves patients, it is helpful in reducing symptoms and especially muscle pain but if you have Graves and your labs are really high, you are probably going to require prescribed meds as well.  I do know of Graves patients who have gone into remission using other natural methods as well like Bugleweed, Melissa and Mortherwort.  There are Naturopathic internet sites that would give you more information on this.  As far as diet, the artificial sweetener Aspartame needs to be avoided especially.  As long as you don't overdo salty foods, and don't use iodized salt, you should be okay.  I never had a problem with this.  Vitamin D and Magnesium are also very important.  I had no ill effects from the uptake scan but I do not think it is absolutely necessary diagnostically if you have documented antibodies.  I would not have more than one scan.  One of my new docs wanted to repeat this and I refused.

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    • Posted

      Hi Linda

      I ordered L-Carnitine and want to start taking it. I see my doc on Tues and will ask if it's okay as I'm taking Verapamil for migraines and BP.  I was wondering, in the event he won't give me meds because I am not having the uptake test yet - in your experience would Bugleweed and Carnitine work without meds to raise TSH? 

      Thank you!!

      Jeannie

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