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Do you take LDN and also have Hashimoto's?

Discussion in 'General ME/CFS Discussion' started by 2Cor.12:9, Oct 15, 2015.

  1. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Hi. In addition to ME/CFS/FM I also have Hashimoto's and take Synthroid/Cytomel. I started LDN 8 weeks ago and have read warnings about Hashi's patients getting suddenly hyper and overmedicated when the LDN starts improving their thyroid condition. I don't want my heart to go wonky all of a sudden.

    Does anyone have experience or thoughts about this? I'm up to 3.5 with LDN and am going to get my thryroid levels checked soon. I don't think I have a problem...it's hard to tell because CFS has always caused occasionally heart irregularities.

    Thanks for any input.
    -diane
     
  2. panckage

    panckage Senior Member

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    A girl who has a YouTube channel has hashimoto's and is on LDN

    I think she's on this forum but I don't know her tag lol
     
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  3. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Thanks panckage. Happy to hear her success story.
     
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  4. JamBob

    JamBob Senior Member

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    I have Hashis and take Armour and have been on LDN (4.5) for about two years. I can't say I noticed any difference in my thyroid function at all and testing hasn't shown any difference.

    The only thing I notice with LDN is that my sleep is better and more restful - so I continue to take it for that reason.
     
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  5. 2Cor.12:9

    2Cor.12:9 Senior Member

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    @JamBob Thanks -That's good to hear. I've heard the warnings and some horror stories about starting LDN when on thyroid meds and then suddenly going into afib from becoming overmedicated with thyroid. And my doc has always been concerned about that too before I started taking LDN.

    I'm curious - have you always just taken Armour or did you try Synthroid/and or Cytomel? I do the Synthroid/Cytomel combo but have wondered if Amour help people with CFS more.
     
  6. panckage

    panckage Senior Member

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    I get a sleep benefit too I think. It's really weird though. I seem to wake up every hour or two just like I did before LDN but somehow I feel good and the waking up doesn't bother me anymore. Maybe because feel happy? Maybe because I get back to sleep sooner? It's weird but good!
     
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  7. 2Cor.12:9

    2Cor.12:9 Senior Member

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    @panckage and @JamBob - Have either of you had improvement with fatigue at all?
     
  8. panckage

    panckage Senior Member

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    Maybe not. It's kind of hard to tell so far but it's given me a huge improvement in mood. I had no motivation before but now I'm highly motivated. It also has eliminated most of my brain fog. I can have hobbies again :D
     
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  9. littlebird6180

    littlebird6180 Senior Member

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    I was diagnosed yesterday with Hashimoto's but have been on LDN since July and am still very slowly increasing my dose. I will say that for the most part, because of the LDN, I've never felt this good...ever. I have sustained energy and mental clarity. I'm still not where I'd like to be but am grateful for this improvement.

    I also have CFS/ME and probably other things...diganoses are still rolling in.
     
  10. 2Cor.12:9

    2Cor.12:9 Senior Member

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    You're improvement is wonderful to hear! Would you mind sharing how long you've been sick with CFS and how severe it was when you started LDN compared to now?

    I started at the end of August on .5 and will be up to 4. tonight. I've been steadily improving with the LDN but was really sick with a major relapse was bedbound all day. (been sick 29 yrs). LDN has greatly reduced pain, improved my cognitive function and is now starting to help the fatigue. I'm not turning cartwheels but I've been able to go out briefly and do some housework. I'm hoping the LDN will help me to get back to my usual "70%" remission.
     
  11. littlebird6180

    littlebird6180 Senior Member

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    Gladly!

    I've been sick for 20 years and I'd say that I have a moderate case. I'm not bed bound and I work full time (from home) and have two little kids. But I can say that I spend most of my life feeling awful. I have terrible brain fog, memory loss, always feel heavy fatigue, have chronic migraines, muscle/joint aches, exercise intolerance.

    I started LDN in July at 0.1 mg and it took me until a few weeks ago to get up to 0.5 mg. The first few weeks were really tough--I was knocked out with fatigue. Couldn't stay up past 8pm and felt like a zombie all day. That subsided though and then I just felt nothing until I eventually got up to 2mg. I'm at 3mg now but every time I try to increase too quickly, I feel rotten--headaches, feel like i'm getting sick. So I have to take it really slowly.

    But at 2mg I noticed my head felt clear! And I had energy but it wasn't a false energy. Usually with caffeine or other stimulants, the exhaustion is still right there behind that energy. The energy feels like a thin shell. It's hard to explain. But this energy feels clean and deep.
     
  12. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Oh, yes - it's very rough having little ones to care for with CFS. I had 3 - ages 2-11 when I got sick - Glad you're able to work at home. I've never been able to work outside the home even when I'm "in remission" - but I have always worked from home part time- (self employed) so I can go at my own pace. When I'm well I blog full time - for free. ha!

    Having both Hashimoto's and CFS/FM is challenging because it can be hard to know which is causing the symptoms. We kept tweeking my thyroid meds until my numbers looked good and blamed the rest of CFS. Although I can feel the difference in the two types of fatigue. For me hypothyroid fatigue made me sleepy tired. Like I could nap all day. CFS fatigue is so intense that it makes it hard to sleep.

    I like your descriptions - you expressed it very well.
     

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