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  • sldavis
    Participant
    March 17, 2016 at 12:20 pm
    Post count: 2
    #1060725

    ok, I had RAI in November of 2012. I was diagnosed with Graves Disease about a year prior to that.

    I have been on Levothyroxin since. I’m at 137 mmg/day. I get my blood work done regularly. I take my pill religiously every morning at 6 am. I don’t eat anything for an hour after and I don’t take my vitamins for 4 hours after. When they do my blood work they only test my TSH because they said they don’t need to check my T3 or T4 since I had the RAI.

    I still feel miserable most of the time.

    I read in another article that you in fact do still need to check the T3 and T4. I also read that you should take a Desiccated Thyroid as well as Levothyroxin if you have had RAI, has anyone else heard of this?

    I just want to have the motivation I used to or at least close to it. It’s so hard for me to accept that I am just going to have to get used to feeling like this as my doctor has told me.

    Am I the only one feeling like this or is this normal?

    Thanks in advance for your input.

    Kimberly
    Keymaster
    March 18, 2016 at 9:29 am
    Post count: 4294
    #1184343

    Hello and welcome – hopefully, those who have had RAI will chime in, but here are a couple of thoughts…

    1. TSH alone is fine for patients who are stable and feeling well, but if you are still experiencing symptoms, it certainly makes sense to see where Free T4 and T3 are. If you think you might need a second opinion, the “Looking for a Doctor” thread in the announcements section of the forum includes links to several good search sites where you can locate a doc near you.

    2. We hear mixed reviews from Graves’ patients on T3/T4 combination therapy, which includes products like Armour and Cytomel. Some do feel that it improves symptoms, while others believe that it brought back a return of their old hypER symptoms. Patients who do choose Armour usually take that product alone, and not in combination with levothyroxine.

    The European Thyroid Association came up with some guidelines on when to pursue combination therapy. They recommend T4-only therapy for at least six months and then ruling out any other conditions (sleep disorder, other autoimmune issues, etc.) that could be causing the symptoms, as well as ensuring that the patient is compliant with dosing guidelines (which it sounds like you already are). If the patient is still experiencing symptoms after that time, they recommend a short trial of synthetic T3 (they do *not* recommend Armour or other dessicated products), with a follow up evaluation to see if symptoms improve.

    AmyM
    Participant
    March 19, 2016 at 6:25 pm
    Post count: 11
    #1184345

    Hi, there! Wow, we have some similarities! I’m also from Indiana, DX w/Graves in Nov. 2011, beginning treatment in early 2012. I felt AWFUL on methimazol and propranolol initially, although it DID alleviate my symptoms pretty quickly. Unfortunately I started gaining weight and developed an awful facial rash, along with losing a TON of hair. :( It was pure hell.

    I got RAI in 2013 when my levels weren’t stabilizing. After going up and down w/my levels, being put on various hormone bioidentical creams, etc etc..I finally ditched my Endo and started seeing an integrative medicine doctor on the advice of a friend who saw her for Hashimotos.

    OMG. I so wish I’d gone there earlier. She did extensive bloodwork, saliva and stool samples–found I had a parasite (not uncommon) along w/so many other things. I stopped all the creams and she put me on Armour- a combination of T3/T4. My levels immediately started coming down and I started getting my life back. I’ve been seeing her for almost a year now and at my last checkup a couple weeks ago ALL my levels are nearly NORMAL. Can’t believe it. I have learned so much. Only thing i’m struggling with now is weight gain, especially around my middle in thighs. I’ve NEVER had this ugly muffin top and i’m struggling hard with it. I also discovered in bloodwork that I have a sensitivity to gluten–UGH–so now i’m almost completely gluten free. Despite working out and eating mostly Paleo, I can’t lose this nasty fat. I’m constantly online looking for help and will probably meet w/the dietician at my new doc’s office soon for some help.

    There is help. Feel free to comment back w/any questions you may have. I feel like an expert now, unfortunately!

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