Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Thyroid's out, Having Problems with Adrenals-ACE is being tried.

Discussion in 'Hormones' started by Misfit Toy, Mar 1, 2016.

  1. Misfit Toy

    Misfit Toy Senior Member

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    Hi guys. It's been 2 weeks since having my thyroid removed. Oh, the joy. At first, I was doing well and then it all went to hell in a handbasket. I was put on one grain of NT and after a week it built up too much in my system and BOOM...I started having loose stools, not wanting to eat, and felt like I had adrenaline coursing throughout my system. I felt seriously nuts and went to the ER.

    I saw my doc yesterday, my DO who is treating me who confirmed my suspicions-that I was hyperthyroid because when you have the surgery, your thyroid shoots out a lot of hormones when it's touched, so it's like you have this massive dump of thyroid hormones when the doc starts taking it out. Technically, you don't need thyroid meds for a month after surgery, if your thyroid is actually producing hormone.

    My doc dropped me down from 65 mg of NT (natural throid) down to 16 mg. Things are slightly better, but any time it changes, it's a major adjustment as I am noticing.

    He feels that I am having a hard time due to the fact that my adrenals are SO low. The cortisol and that is a huge piece of the puzzle with the thyroid, which makes me want to barf because for me, treating the adrenals is the hardest thing I have ever tried or done, for years. Just shoot me. Adrenal problems, just go away.

    I tried ACE this morning, adrenal cortex extract and man...I felt like crap. Racy, out of it, not good. The opposite of how you are supposed to feel. I just wish I could take something that was for the adrenals that did not stimulate them, or me.

    Has anyone tried ACE and had a problem with literally one drop? No joke, I had a problem with one drop. It may have been two, but seriously? People take several drops of this stuff all day long. And do other thyroid or adrenal patients have any insights?

    I knew having my thyroid out would be hard. I knew it would take time. It's only been two weeks, but I feel mentally like a different person. I hate it. I am needing a lot of quiet time and alone time. I am tired, which makes sense, but also just feel.....odd. Like where did I go? I am sure I will come back over time, but it's the waiting.

    @daisybell -I told you I would tag you. :)
     
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  2. daisybell

    daisybell Senior Member

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    Thanks Misfit!
    Your body has got a lot to cope with right now - recovery from the trauma of the surgery, recovery from the effects of the anaesthetic and adjusting to the change in hormones... That's all huge! But you're hanging in there and you will heal.... Anyway, you know I'm thinking of you and wishing you all the best. Hugs to you.
     
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  3. Misfit Toy

    Misfit Toy Senior Member

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    You know what is so funny? When you look up anesthesia online, it says it only takes 6 days to rid yourself of it. I am like....what?? WOW. Thank you, Daisy!
     
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  4. Mary

    Mary Senior Member

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    @Misfit Toy - wow - your body's going through a lot and I'm sorry it's so rough! I've never taken ACE, but I have taken adrenal glandulars, most notably Drenatrophin PMG and Drenamin by Standard Process, with no problem. I don't know how they would compare to ACE.

    Also, have you tried extra pantothenic acid? Pantothenic acid is crucial for adrenal health and hopefully would not stimulate you like the ACE is doing.

    Am crossing my fingers for you! :)
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    Is this like a natural version of Cortef or something totally different?
     
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  6. Misfit Toy

    Misfit Toy Senior Member

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    YES. And I didn't do well on Cortef. Anything that touches the adrenals can be a problem.
     
  7. Gingergrrl

    Gingergrrl Senior Member

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    Okay then that is out and I think I remember one of your former Cortef horror stories! For whatever reason, Cortef helps my MCAS reactions and when I tried to taper off the reactions got bad again so I have to stay on it. But I know that is a totally separate issue that doesn't relate. Hoping they find the right combo of meds for you ASAP.
     
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  8. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl -thanks for your response. I think what I'll do is put one drop in a glass of water and take a sip and hope for the best! I'm glad Cortef has helped you so much. It did for me also back when I wasn't as sick. I could take a lot at one time. It got me out of a major stress response.
     
  9. Gingergrrl

    Gingergrrl Senior Member

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    Good luck and I've had many meds that I've started at a toothpick dose or just one drop. For whatever reason, Cortef helps control my MCAS reactions but am not sure what other role it plays for me. I have not had any side effects from it but I think my dose is low (15 mg/day total.) Good luck.
     
  10. justy

    justy Donate Advocate Demonstrate

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    Hi, so sorry you are (STILL) having such a hard time. Dasiybell is right that for someone already sick an operation can take a long time to recover from.

    I don't know much about thyroid really or adrenals - I have some issues with them myself, but cant handle meds so just put up with the problems. I like your idea of putting one drop in a glass and just having one sip. If you measure out the water first you could do this every day and increase to two sips, then three etc I know its painfully slow, but may work?

    sending :hug::hug: your way.
     
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  11. Effi

    Effi Senior Member

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    I've read it takes about 30 days to get it out of your system completely... If only we could fast forward you in time a little bit! :rocket::hug:
     
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  12. satori

    satori

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    Had a problem with all the stimulatory adrenal supplements. I now use pregnenolone and DHEA and make sure I have the nutrients necessary for my body to make the conversions where needed. Also use ashwagandha to help smooth things out, but I think that may stimulate the thyroid. I found pantethine worked better than pantothentic acid because it was less stimulatory. My results may be skewed by my specific issues.
     
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  13. Misfit Toy

    Misfit Toy Senior Member

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    @satori -my biggest fear is they say you will never get your thyroid hormones working without adrenal support. I don't know my levels yet. Just emailed Kracht to send me a saliva kit. pregnenolone converted to estrogen for me. major problem. can't have that. I am reading ashwagandha is not good for low cortisol which is what I have. The whole thing is so confusing. It's different for everyone. I know I can have salt!!
     
  14. maryb

    maryb iherb code TAK122

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    Vit C is good for adrenals, I would try liposomal though.
     
  15. L'engle

    L'engle moogle

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    I found the advice tended to be circular. Thyroid articles would list adrenal dysfunction as a cause of thyroid problems, but then articles about adrenal dysfunction would say they could be caused by thyroid, stress, emotional problems, blah blah, essentially a cut and paste list of the things that are listed as generically causing everything.

    I haven't found a good solution to any of this either. :(
     
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  16. Misfit Toy

    Misfit Toy Senior Member

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    @L'engle -I agree. What causes adrenals to crash? So many things. What causes thyroid to crash...so many things. The 2 of them can be caused by so much. Remember when everyone thought CFS or ME was adrenal burnout? Well, what caused the adrenals to burn out?

    I am sure adrenals, mine are not helping my thyroid (lack of one), but I also know that having my thyroid out and being in perimeno are causing my adrenals to totally tank.

    I guess I just have to give it time, rest and hope that things get better. I am noticing right now, that the less interaction with phone, texting, etc, is helping me.
     
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  17. daisybell

    daisybell Senior Member

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    Rest, rest, rest and more rest!!!
     
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  18. Misfit Toy

    Misfit Toy Senior Member

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    Yes, I am going to watch a movie and brush my teeth! That is my day. The good news is, I made 2 necklaces!
     
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  19. Misfit Toy

    Misfit Toy Senior Member

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    I was so happy that the news anchor in Philadelphia wore one of my necklaces last night, so a woman emailed her and asked, "Where did you get that and the news anchor told her of me, so this woman reached out to me. It prompted me to get on it. I am tired, but it ended up as a perk. A pick me up.

    Okay, off to rest... windyweatherdiva.jpg
     
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  20. Misfit Toy

    Misfit Toy Senior Member

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    Wow, that is huge on here.
     

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