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I have read that some people don't tolerate the 4.5 mg dose well and stay at a lower dose while other ramp up slowly to reach that point. There is very little said about the detail behind it. I mistakenly started out at 3 mg and have been at that dose until my next refill in a few days. I wasn't aware of the advise for thyroid patients to start out at 1.5 mg and slowly increase to avoid problems with hyperthyroidism. I was told by my endo and a few members of the Yahoo LDN group that this wasn't possible since I do not have thyroid gland. I still would have to disagree since I experienced something after three weeks on LDN and I have no other explanation. I had an EKG done and wore a Holter heart monitor because of my complaint of rapid heart beat and chest discomfort. This complaint lasted over two weeks and was a long drawn out process since that was my breaking point with my endo. Since he refused to consider anything I said, I found another. Because of these delays, I found myself in such discomfort that I skipped/reduced my thyroid meds for a period of ten days. I openly admit this was not smart because it has thrown my lab tests way off and my new endo told me she wanted me to increase my levothyroxine by 25 mg per day. I did for just under a week and my neck and should pains have returned with a vengeance. I finally mustered some courage to message my endo to request I drop back down to my 100 mcg/day. I explained I was feeling unwell and my pains returned. I reminded her that I dropped my dose and believe that was the cause of the drastic jump in my TSH. She simply agreed that could be the cause and said it was fine and we'd see where I'm at in six weeks. The odd thing about the whole situation is that the week I dropped my dose was a week in which I have felt the best I have in a long time. I am now back to having a very strong pressure and tension in my neck in which I previously thought maybe it was a sign that the cancer had returned. It has me baffled. I don't have the rapid heart beat now but still experience occassional chest discomfort and still get winded easy, which I've never had issue with before. I will have to be patient and see what happens. The LDN doesn't seem to be as effective as when I first started it so I am taking that to mean that it is time to increase the dose to 3.5 mg. My PCP is agreeable to that. I am hoping the joint pain that is starting to creep back will fade once again. I am curious if this increase is going to have a thyroid effect. Interestingly enough, I find most of my pain is concentrated in my right knee. I have never had issues in the past but wonder if it is an easy target due to orthoscopic surgery on it as a child (an old football injury, haha). I also developed psoriasis over my upper legs that I never had before either. It's odd, since I thought LDN was supposed to help clear it.
I don't plan to discontinue it because I am sleeping much better and the LDN has had a positive effect on my mood. In addition, I have been off Entocort for six weeks now. I have been trying to be clear of it since 2011 when I started it, so I am very pleased. The down side is I have been feeling pretty rough in the tummy department. The past couple days I have been having that pukey feeling that I felt when I first joined this forum. That tells me the Entocort, even at the extreme low dose I was taking, has been masking some offending foods. Big sigh. I am at that cross roads now where I need to suck it up and seriously look at what I am eating or risk going into flare and being set back. I remind myself that I have been trying for years to get to this point so I should be happy.
For me, it seems obvious which complaints are associated with MC and those that go with my thyroid but I'm not so sure my doctors will get it. They have been supportive this far so I can only hope for the best. I wasn't anticipating so many obstacles by using LDN but I am relieved that I am not using some of the other drugs out there to control the pain. I still have to see the rheumatologist and I don't know how that will go but my PCP assured me that she will continue supporting my use of LDN no matter the outcome of the visit.
All in all, my experience so far is a love it-hate it sort of feeling.
