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over active tyroid

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steff111
steff111

I was diagnosed with graves/over active thyroid over 2 years ago. I feel great/normal for 3 to 4 months then the awful feeling strikes. Sickness speedy weight loss tiredness all the horrible things that come with it I then get fir 3/4 months m. I am on my the highest dose of carbrimazole and this time around I just can't level it out. For the first time I'm experiencing the whole swollen eye's, gritty really heavy and by the end of the day suffering double vision, I'm a 31 year old male. I'm now being told I could suffer from TED tyroid eye desease. Has anybody suffered this too so bad? If so what was the treatment you where giving? And was it successful? My eyes are swollen up and out the whole size of my eye sockets, actually pretty scary actually as the swelling has came up this bad onky within 2 weeks. Any answers would be much appreciated. 👍

0 likes, 6 replies

6 Replies

  • linda187
    linda187 steff111

    Posted

    Hi Steff.  First of all, you need to confirm your diagnosis.  Hyperthyroidism can be caused by nodules or by autoimmune diseases like Graves disease or Hashimoto's or both together.  To confirm diagnosis, you need to have antibodies TSI and TRAb or sometimes they do TBII instead of TRAb.  Hashimoto's is diagnosed by anti-TPO and TGAb antibody testing.  If you have both together, you will be very sensitive to the antithyroid medication.  You should never discontinue the medication even if your thryoid levels are normal, unless the antibodies are in the normal range.  Long term low dose medication lowers the antibodies.  The eye disease (called TED for thyroid eye disease) needs to be assessed and treated by an ocular specialist.  If you take supplements along with your meds, it often helps.  The one that helps eye disease is Selenium, 200 mg. daily or you can eat 2 Brazil nuts daily.  You need to be careful of your levels though and getting  your Selenium level tested would help.  You should never have the treated called RAI (Radioactive Iodine therapy) as it will worsen your TED.  Also hyperthyroid patients need vitamin D3, 1,000 to 5,000 IU daily as they are u sually deficient in this (I prefer the small gel caps) as well as deficient in Carnitine so adding 3,000 to 4,000 mg of Regular L-Carnitine daily helps achieve remission along with your meds.  For the eyes, the other thing that helps is to soak cotton pads in Witch Hazel and place over closed eyelids. 
  • michelle60449
    michelle60449 steff111

    Posted

    I was diagnosed with Graves in Nov. 2014. It started with my vision. It was as if I woke up one day and my vision has drastically changed for the worse. To make a long story short, yes I suffer with TED. My eyes are swollen, watery and red. i suffer with blurry and at times double vision. I feel like I have grit in my eye and somedays my vision is worse than others. I took IV steroid pulse treatments to help with the inflammation. I had 500mg once a week for a month after being on a steroid pill for 2 months. I'm currently taking Selenium 200mg twice a day, Vitamin D and C and eye drops are my life saver. I need orbital decompression surgery in which I'm trying to put off until the first of the year but with the weather getting colder where I live it makes my eyes 10x worse.
    • steff111
      steff111 michelle60449

      Posted

      Hi there thanks so much for ur reply, yeah I too suffer graves was diagnosed around summer 2012 it's not something I knew much about so have done a lot if reading & asking questions. I'm currently having IV treatment for my eyes/TED now too, one weekly 12-14 week course, i got started with 2 bigger doses then gradually they've lowered it, I'm now suffering every side effect possible from the steroids from week to week which just as bad as the symptoms of the actual thyroid 😩 I'm on my last week treatment but wouldn't say my eyes are anywhere back to normal and not sure if they ever will be? Let's see what the next step is?? And fingers crossed it helps. I'm only 32 I feel this has changed my whole appearance and now makes me very self conscious. After all the ups & down with my blood results and feeling the worst I have ever felt plus losing the most weight I've ever lost & at one point.... just recently the sickest I've every been In my whole life my consultant has put me on the emergency list to have my full tyroid glad removed. I'm still having to take carbrimazole (60mg) to keep things under control as the surgeon explained they won't touch me if my tyroid levels dont stay down. I really don't want any kind of op but I'm at a stage now where I have tried everything meds wise and nothing keeps me level so looks like this is my only option. I have 3 children 1 still only a toddler, I hate feeling so Ill and unable to do simple little things for them without feelin/being sick, aching all over or just so Down in the dumps I can't be bothered to join in with family things. I have fabulous support from my wife but feel it's a lot of strain of her & our relationship. This illness really is hard to live with, ive been out of work for 4 months, signed off by GP at the moment so things are tough. I really hope that after my op my life will turn a cornor for the better and if that means being on thyroxine for life then so be it, I'm so desperate to feel a little human again

      This site has been a great help over the past couple of months, reading others story's close to my own doesn't make me feel so alien-ated lol so thanks for the replys folk. All the best for 2016 to all. 👍

  • linda187
    linda187 steff111

    Posted

    I belong to another Board where we have all kept our thyroids and learned a lot that the doctors don't know which we like to pass on.  This is not a thyroid problem, it is an autoimmune problem.  You can heal on a much lower dose of Carbimazole if you add supplements like Regular L-Carnitine, 2,000 mg, Acetyl-L-Carnitine 1,000 mg, vitamin D3 gel caps and Magnesium 200 mg for starters.  Watch your diet and do not eat high iodine foods like fish etc.  A diet rich in proteins, fruits and vegetables is best.  The Acetyl-L-Carnitine especially will lower your excessive thyroid hormones quickly because it crosses the blood-brain barrier.  There was a research study done by an Italian Endocrinologist on the benefits of hyperthyroid patients taking Regular L-Carnitine because they lose carnitine from their muscles thru urination when running hyper but there has been no research done on the Acetyl.  However, I and others have used it and it turned my disease around.  You do have to monitor your labs more frequently though and adjust your meds and/or Acetyl-L-Carnitine based on your results.  Your docs will not know about this.  As for your eye disease, you need to see an ocular surgeon who specializes in treating thyroid eye disease.  If you can lower your values and antibodies with the Carnitines, perhaps your eyes will improve also.
  • linda187
    linda187 steff111

    Posted

    Sorry, I see I have already responded to your posting.
  • levana12656
    levana12656 steff111

    Posted

    Just joined this group and saw your post from 4 months ago.  Have you figured anything out?  I also have severe Graves disease that doesn't respond to thyroid medication.  I was on 60mg (the absolute highest dose) of methimazole and my T3 and T4 kept going higher and higher every time the doctor increased my dose.  My endocrinologist said this was not unusual for graves (I didn't know this when my GP prescribed it).  Apparently my only option was thyroid removal.  I have an appointment to have the surgery but decided to try a juice cleanse as a last resort first.  I started only eating juice (carrot, kale, beet, apple etc.) several times a day and also a vegetable salad with homeade flax oil salad dressing.  I also supplemented with potassium iodide (Lugol's 5%) 5 drops , 500mg magnesium, selenium, and zinc every day.  Within two weeks my T4 and T3 levels were within normal range and I felt so much better (my levels used to be soooo high).  I am sleeping again too.   I still think my heart is not totally normal yet and my energy could still be better.  I'm planning on continuing this for a couple of months and then introducing foods one at a time.  I already know I can't eat gluten, dairy, or sugar (at least not for now).  Good luck with everything and hang in there.  You will feel better soon I'm sure. 
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