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I've been taking LDN for eleven weeks now have been at the 4 mg dose for almost a month. I've found that the increase from 3 to 4 mg has created the same chest tightness issues I had when I first started it and at about the same time. Three weeks into the upped dose I started having mild but uncomfortable chest cramping and shortness of breath upon mild activity. I have my labs scheduled for next week to see where my TSH is at since it is elevated and then we can address medication. I did ask about trying something different, hoping we could go the NDT route. It's not likely, but at least my endo is open to trying Tirosint. It may or may not make a difference but it's worth a try. I'm hoping my TSH isn't still elevated because I was originally told to up my levothyroxine from 100 to 125 mcg. I did that for a couple days and couldn't tolerate it any longer. I explained to my endo about the ten day period of skipping/reducing my meds when I first had issues and she agreed that I should go back to the 100 mcg dose, which I'm thinking is still too high. Hopefully, my numbers will show the same thoughts. I don't know if I'm simply absorbing everything better because of the LDN or if I've become sensitive to the generic brands or a combination of both.
The LDN is still working to reduce the joint pains but the stiffness tends to return in the evenings in my right hand, right knee, and ball of my left foot (weird how it's in such an odd place). It's not horrible and I think I'd rather deal with that than switch to some of the other immune suppressing medications. I also have my appointment with the rheumatologist in a couple weeks so it will be interesting to see her take on my situation.
I continue to some bad shoulder and neck pains along with the feeling that my neck is about to explode. I am convinced that is due to too much of the thyroid meds. It seems to be a common complaint even though my previous endo insisted it was not related. I have yet to talk to my new endo about that. The LDN eliminated some of the other muscle pains I was having so there seems to be no other explanation.
Just a reminder to anyone with thyroid issues who is thinking about starting LDN...... start at a very low dose and slowly increase over time. I had not done enough research and by the time I found out, it was too late. I've put myself through more discomfort than necessary and hope it will be resolved shortly. Lesson learned the hard way. The EKG and Holter Heart Monitor testing ran about $1,000.
Very hard lesson learned. At least my endo will have a reference point now and know I don't have any underlying heart issues.
It's like the perfect storm of a very sensitive body, doctors that are trying to help but don't have the experience yet (thank God they are willing to try!), and me with limited experience/knowledge fumbling my way through it all.