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Don't Get Your Thyroid Out...Ever. Leave It In Until It Kills You.

Discussion in 'Hormones' started by Misfit Toy, Jun 27, 2016.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I think, maybe I am wrong, that I am the only person who had a thyroidectomy on this site. But if not, come out of the woodwork.

    If I had to do it over again.....I may not have done it. But, UGH....I can swallow now. I couldn't with it in. I know all of the iodine mumbo jumbo.

    I am on 68 mcg of T3. I am trying to go up on it, but every time I do, my heart moves at the speed of light. My heart was best at 25 mcg, but I couldn't think at all. Big problem.

    So, now I am at this low number STILL. And, my heart beats at 108 BPM. I am not used to that. Not at all. And it pounds.

    What about adding T4? I am not wanting to yet. I really don't want to. I am concerned though about this heart rate. There are several theories...THEORIES going on:

    I am not on enough. Very possible, but then why when I go up do I not have a slower heart rate? That makes no sense. Instead, it beats and beats and drives me nuts. The normal dose of T3 for a thyroidless person is 100 mcg on up. Especially women. For men, it's less.

    My adrenals can't handle the dose. This actually makes sense. Weak adrenals equals inability to handle thyroid meds.

    This STTM word called POOLING.
    Due to other issues like inflammation, adrenals, the medicine, or T3 may not be getting into the cells, but instead just floating around in the body and making me sick. Yes, this is possible.

    My biggest fear-that I am gone. That me, the Misfit Toy is forever going to be gone to the land of further misfits. My creativity is gone. My love for music is waxing and waning, my making jewelry has perished for now. I feel lost. And then there is the thyroidless world. All everyone talks about is how life as you know it is gone. UGH. Shoot me.

    I am sure that for the well, the "normals" that life returns to bliss and all is well with the world. Lucky souls.
     
    belize44, cfs6691, L'engle and 3 others like this.
  2. OkRadLakPok

    OkRadLakPok Senior Member

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    (((MISFIT)))) It pains me to hear this!!! If it gives you any comfort, I have my thyroid and yet I have lost all my drive for almost everything. I used to do videos on a topic I liked and now I cannot. I used to memorize a poem I liked a lot and I can't now. After my wreck, everything changed.

    Life is a terrible ride for some of us. You are so lucky that you once loved music and maybe that very music can heal you now,heal you in some way now. I used to love JS Bach. I listened to him almost every day. I listened to him when I had my wreck and I can't listen to him anymore but maybe I should. Maybe his music can heal me, too.

    Try not to listen to people about that world without a thyrooid. I am sad because they say I may lose my two front and centre teeth and maybe more because of the wreck. In that world, the toothless world, they say they same things.

    But then there are people who say how they are coping. Always listen to them because we cannot control what happens to us.

    We can't manufacture our attitudes, believe me. And believe me, I say "Shoot me" A LOT these days.

    But for today you and I both chose to live. A lot of people on this very day chose not to live and ended their lives. It often is not even a choice, I know that now. But somehow we were ABLE to choose today.

    I wish I had a way to make things right. Suffering is hell.........it really is. But I am glad you are still here and your icon always makes me smile. Stick around because you are needed here :)
     
    belize44, Paralee, cfs6691 and 3 others like this.
  3. TigerLilea

    TigerLilea Senior Member

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    Misfit, have you tried using Armour Thyroid? Some people swear by it. They had problems with the synthetic and did really well once they got on the natural product. Something to talk to your doctor about if you haven't already. Sorry you are feeling so bad right now.
     
    belize44 and Invisible Woman like this.
  4. frog_in_the_fog

    frog_in_the_fog Test Subject

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    It was suggested I should nuke my thyroid, but I chose not to. I see my ME as autoimmune in nature, it is my immune system at battle with just about every part of me.

    I fight to make it through each day whole, hoping one day this war will end, and then maybe, I will finally know peace.
     
    belize44 likes this.
  5. ebethc

    ebethc Senior Member

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    this may be the 20k question, but how do you solve "pooling"? I wonder if this is an issue for me..
     
  6. mermaid

    mermaid Senior Member

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    @Misfit Toy
    I know of 2 people who have had overactive thyroid issues, and one (my sister in law) had radioactive iodine treatment on it, and now seems to live an almost normal life, though she did have a heart attack shortly after, and thinks that was due to poor medical treatment not picking up the sudden changes and needing to supplement with thyroxine.

    The other person had surgery, and life is not quite the same as it was for her. We 'met' online at the point 3 years ago when we had both decided to try T3 only (I am hypothyroid though). I am still on T3 only, but she developed worrying signs of Atrial Fibrillation, waking at night with very fast heartbeat and was concerned that the T3 only was contributing to this.

    In the end she has returned to a mix of T4 (mostly) with a smaller amount of T3 (only about 10mcg) and with the addition of the 'adrenal cocktail' (you probably know of this already but if you google online you find it) has mostly eliminated the fast heartbeat issues - though she had a spell of it the other day soon after she changed the brand of her T3. The adrenal support however does seem critical for her.

    Incidentally, I am no expert on T3, but why are you still increasing it if it is making your heart beat so fast? There is a big difference between 25mcg of T3 and 68 mcg of T3. Why not settle for a higher than 25mcg amount but less than 68mcg? I am on 55mcg per day split into 3 doses, and though not perfect, if I were to increase it I would also get the fast heartbeat you mention, so I don't! I have occasionally ventured up to 60, but tend to get issues then so come back down again. I can tolerate a higher amount first thing than later in the day I find too.

    However, as I said, I am no expert, except on my own body, which is of course very different from yours which has been through that surgery. I still have ME but have been slowly improving in various areas over the past few years after trying various methods to support the symptoms (e.g. immune issues better, and gut problems improving).
     
  7. ahmo

    ahmo Senior Member

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    This has certainly been the case for me. As my adrenals got healthier, I tolerated the higher T3. I'm so sorry for your continuing troubles :hug:
     
    AndyPandy and Invisible Woman like this.
  8. Misfit Toy

    Misfit Toy Senior Member

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    ahmo, what is your dosage?
     
  9. Misfit Toy

    Misfit Toy Senior Member

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    Because from what I am hearing...and I have no idea if this is true, the heart rate can go up from not having enough T3, or from the adrenals. Not sure. Many people are on 100 mcg. I have no idea how, but I know of it.

    I don't like the idea of going on Synthroid. I didn't seem to do too well on the T4. Many don't. T4 is not easy if you have a sluggish immune system. Many people can't convert T4 over into T3. Then they have the whole reverse T3 mess.

    @TigerLilea -Armour changed the formula and added some awful fillers that are making many sick.
     
  10. Misfit Toy

    Misfit Toy Senior Member

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    According to STTM protocol....you back down on the T3 and then fix the underlying issues. Who knows...it has something to do with adrenals and iron.
     
    ebethc likes this.
  11. mermaid

    mermaid Senior Member

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    @MisfitToy (sorry can't get the tagging thing to work!) Well all I know is that the makers of T3 in my country (UK) do not recommend taking more than 60mcg, so I am assuming that is the normal expected dose. Like you, I do know of people taking more, but people like Paul Robinson, who has written a book about the use of T3 (he's in the UK) doesn't think generally that high amounts are a good thing, and if using them only after careful observations of heart rate, temperature, and BP. If those things are shooting up, then it's an indication that it's not right for your body at present for various reasons.

    It may be that you never need as much as 100mcg, but yes, I agree with STTM that underlying issues could be at play with such things as adrenals or iron - both of which can be checked with either the saliva cortisol test or blood tests for the iron.

    Yes, I sympathise over the T4 issue. Although I seemed to be OK on it for the first 5 years or so (was on it for around 17 years as I didn't know any better then), after that my system began to struggle, and I ended up with a lot of weight and what got diagnosed as ME. I am still trying to recover from that many years later, and will probably never be right though I do lead a reasonable retired life now.
     
  12. wastwater

    wastwater Senior Member

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    I read that people in nuclear zones that were either born with no functioning thyroid or had function eradicated were able to live fine with thyroid replacements even from an early age,so maybe you just need to work with doctors to get balance right,I take 50mcg t4 for hypothyroidism without antibodies.(hypothyroidism not otherwise specified)
     
  13. brenda

    brenda Senior Member

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    That is all very well for primary hypothyroidism, but it is a different matter altogether when it is an autoimmune illness that is to say Hashimotos. Removing the thyroid does not fix that and you will still feel ill because you have not dealt with the cause of the problem - leaky gut and until that us fixed there is no moving forward depending on how leaky the gut is. You also continue to develop further autoimmune problems .

    It is a matter of suppressing the immune system with medications which will just backfire in the future or fixing the gut with the autoimmune paleo diet which removes the main triggers for the immune system including grains, seeds, nuts, soy, dairy, nightshades and sugar. It is not a permanent duet as you start to test things once the symptoms go. The very ill have to go down that route.
     
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  14. perchance dreamer

    perchance dreamer Senior Member

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    I was on Armour for a long time, but when they changed the fillers, as you mentioned, @Misfit Toy, it didn't work for me anymore. I switched to Nature-throid, and it works as well as the old Armour for me.
     
  15. Gingergrrl

    Gingergrrl Senior Member

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    @Misfit Toy I didn't know that Armour changed the formula and fillers. Do you know when they did this or what the fillers are? Did they announce it on their website? I don't doubt you at all but am surprised my endo did not tell me and I've been taking low dose Armour since Oct 2013. Will research this too. Sorry you are feeling so crappy.
     
  16. ahmo

    ahmo Senior Member

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    Misfit Toy likes this.
  17. Gingergrrl

    Gingergrrl Senior Member

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    I have been researching Armour (in case this could help anyone, I wanted to share what I found) and it seems the most recent formula has dextrose which people could react to if allergic to corn which I actually am not and drinking dextrose/salt water is often a lifesaver for me.

    It also has a dye called "Opadry White" and I am very allergic to the FD&C dyes especially the yellow ones but with further research, Opadry White seems to be another name for titanium dioxide which I am not allergic to. But others could be and it angers me that changes were made but it seems that neither doctors nor patients were informed.

    Are either of these what you reacted to MT or are there even more changes that I did not find?!!
     
  18. Misfit Toy

    Misfit Toy Senior Member

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    On the forums I am on and FB, people became deathly sick on Armour. And yes, they never told anyone of those changes. I never went on Armour. I went on Nature Thyroid with horrible results. I have NO idea why. I was allergic to it, itched my way through it and I am not allergic to pork.

    I am however allergic to any pill that has corn in it. I ordered Tiromel from Turkey which is T3...it has corn in it and I could not stop itching. I was so sick, it was crazy.

    If you are doing well on Armour, then stay on it but so many became deathly ill. Two of my friends that were on it had to literally quit their jobs from going on it. They had no idea what happened, that the formula had changed and thought they were just sick for who knows why. So crazy.
     
    Gingergrrl likes this.
  19. Misfit Toy

    Misfit Toy Senior Member

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    Ahmo, thank you. I am so glad you got up to that dose. I hope I can get close. I am getting conflicting messages. One woman said you will never do as well on T3 alone without T4. I hope that's not true. I was and am not a fan of T4.

    I feel better on T3, BUT....I feel so lethargic. So far, I have made it up to 65 mcg. That's where I am right now. I don't feel like myself, I miss my creativity.

    I have Dr. Wilson's book. I am trying Rhodiola next. Here's hoping!
     
  20. wastwater

    wastwater Senior Member

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    T4 can take a while,usually a few months to feel it working.I don't know about T3,I've never been told I need it.
     
    Last edited: Jul 6, 2016
    Misfit Toy likes this.

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