I can't cope anymore

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I've had Graves disease and thyroid eye disease for 2 years now. My Graves' disease is still not under control I started on 30 mg of carbimazole which went down to 15mg then up to 25mg then down to 20mg now I'm on 10mg because I've gone under active. I started with thyroid eye disease which gave me a protruding left eye, double vision sore eyes etc then it seemed to go so I paid for laser eye surgery because I hated wearing glasses. Now the double vision sore eyes etc is back so I have had to start wearing glasses again. I have severe hair loss anxiety, depression so bad that I feel suicidal, weight loss,weight gain. I am at rock bottom I feel like no one understands how I feel I used to be so outgoing, happy and really hardworking ( I had 3 different jobs at once) I now have no energy can't cope with even working part time don't want to socialise, I look at least 10 years older and feel so ugly, I've had to cut my hair really short because of the hair loss and my eyes are so so swollen and bags underneath I look totally different to before and I'm crying all the time. I feel that my personality has totally changed and it's scaring me to think I might stay like this. Does it ever get better? I've asked my doctor if I could change my endo but he said he's the best in my area but I don't feel like I've progressed in the 2 years since I was diagnosed.

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  • Posted

    Hi Kerry, sorry to hear you are going through so much. Graves is a terrible disease. Can you post your lab so others can see your levels for a clearer picture? From what I've learned, being overmedicated can cause hypO which then can trigger eye disease. If I were you i'd try and switch endo TBH. Just bc he's the best endo in the area doesn't mean he knows how to treat thyroid issues since most endos are more experienced in treating diabetes.

    I'm currently suffering severe hair loss and and was told by 3 doctors (my endo, dermatologist, and family

    Physician) it is because my levels fluctuated causing an insult to the body. Once your levels are stable again, hair loss will settle down but it could take up to 9 months due to different stages of hair growth. I'd suggest purchasing a quality hair topper while your body is recovering, this was suggested to me by another user here too. It really helps with self confidence. Btw, my hair loss has slowed down significantly. Also check your vitamin D and ferritin/iron levels. Many graves patients tend to have deficencies in many vitamins causing hair loss.

    Please go to Elaine Moore's website as she is probably the most knowledgable of this disease on the web. If u write her she can give you real solid answers on what to do. She has helped many achieve remission. Graves sucks but it's not hopeless. Hang in there!

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  • Posted

    Hi Kerry,

    For myself, I found that my Graves disease responded better when I added supplements to my medication.  My TSH remained at 0 for 2 years until I did that after reading a lot of research on it.  I read a research paper that stated hyperthyroid patients need L-carnitine at a dose of 3,000 to 4,000 mg a day.  This helps with the muscle aches because you lose a lot of carnitine from your muscles when you are hyperactive.  Vitamin D is an extremely significant vitamin to date for stability.  I took 1,000 mg but at times raised it to 5,000 mg and I was deficient in both Carnitine and vitamin D and Magnesium.  I take Magnesium 200 mg daily.  That's just for a start.  As you improve, you will be able to slowly lower your medication dosage.

    All the best to you.  You can recover.  

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    • Posted

      How do we get this new doctors to accept that they need to look into carnitine defficiencies?  I have a new endo and asked her about it and she doesn't know about it too just like my previous doctors.  Why can't they teach this research into the new endo dr this days.  I feel like, some patients are getting robbed of this carnitine supplement info because endo dr don't know anything about it. then they take a long time to heal.   

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    • Posted

      Yah my Endo didn't know about it either.  Luckily I came across that research paper from the Italian Endocrinologist, Dr. Salvatore Benvenga.  He wrote a few papers about it and presented at an Endocrine conference in the States but docs are slow to pick up on it.  I would print out and bring those research papers to your doc.  I just took the Carnitine at the dosage the paper recommended and showed my doc the bottle when my labs improved.  Here is his first medical research paper I came across.  You will see more references in the paper that you can look up and print.

      http://press.endocrine.org/doi/full/10.1210/jcem.86.8.7747

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  • Posted

    I have TED and hyper. 2014 if i didn't come accross Linda's persistent case about carnitine supplements, I would be healing so much slower.  in 2016, i decided what the heck, Ill ask my endo to test my Vit D, Magnesium, and carnitine levels.  Endo did Vit D and Magnesium but refuse the carnitine levels since she doesnt know how it works.  I did manage to my physician to get it and she too doesn't know how to dose me with it.  Results: Vit D a bit low now im taking vit d supplements, magnesium is ok so im just taking multi vitamins no iodine, carnininte total and free normal but ester is on the lower side.  So i just took it upon my self to just take 500mg L-carnitine.  Long story short now im in normal range.  I have more hair growing than before.  I feel like i hit puberty.  my hairs on my legs are growing like crazy need to keep shaving it off.  It does get better.  Now im on the high side of TSh 2.66 so I ask my endo to lower it to 2.5mg every other day.  I've gained weight.  Once you normalized, find your TSH sweet spot.  for me 1.5 to 2 TSH is good... <1.5 im losing muscles over 2 im gaining weight even though im working out

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