Margaret - US: Cushing's, Hashimoto's, PCOS, Arthritis, Depression (LDN, low dose naltrexone) from LDN Research Trust on Vimeo.
Linda Elsegood: I'd like to introduce Margaret from the United States who takes LDN. Thank you for joining me, Margaret.
Margaret: Hi,
Linda Elsegood: thank you. Could you tell us when you first started to get sick, how old were you?
Margaret: Well, after the birth of my first child when I was 20, um, I started to have a lot of hormonal problems and symptoms.
And after several years and several doctors, um, my first diagnosis was with the polycystic ovarian syndrome. And, um, I suffered through, uh, many years of trying to find someone to treat me in a way that didn't have a lot of side effects. And I eventually went on Metformin, and that was very helpful. And I kind of had a period of good health for several years, and then when I was about 35 I started to have a lot of new symptoms that were similar but different and more intense.
And after probably four years of that, I finally was diagnosed with having Cushing's disease and having an ACTH secreting pituitary tumour. And I had pituitary surgery, two years ago, in May of 2013. And they found the tumour, they got it out, and I went into remission. And the recovery from that is quite brutal.
You have to slowly wean off of steroids. You have to take them as replacement because your pituitary doesn't work right for a while. And the withdrawal from steroids has been like into heroin withdrawal. So it's very intense. It's very painful. You have a lot of joint pain, muscle pain, um, a lot of psychological symptoms, depression, um, anxiety because not having enough cortisol is almost as anxious.
It is provoking as not as having too much. And so it's, you know, a good year of weaning. And then what happens is because you had high cortisol for so long, a lot of autoimmune things pop up that were being suppressed by the cortisol. And that's kind of where I'm at at this point, where now I have really high Hashimoto's titers and.
You know, I'd have to replace a lot of hormones and I'm still in the recovery process from Cushing's. But, you know, in the meantime, ten other autoimmune things get you.
Linda Elsegood: So, before you, um, started on LDN, could you describe what a typical day for you felt like?
Margaret: Well, I started on LDN when I was about sixteen months postop from pituitary surgery. So I would say that I had very little quality of life. I was still in the place where I was in a lot of pain. I didn't work full time. I was only working part-time and only from home at that point. I could barely do the grocery store by myself and come back home. I still have people taking my kids to school for me and all. It was basically helping me just to survive.
So I would say probably on a scale of one to 10, it was about a three.
Linda Elsegood: Oh, wow. That's not good. Not a good life.
Margaret: I mean, it was better than when I had Cushing's where my life was a zero. Yeah. Before they took the tumour out, I was home-bound and could not work. Didn't think straight. Had severe panic disorder. And anxiety all the time. And how did slept in probably two years by the time I had surgery. Yeah. So it's a really intense disease.
Linda Elsegood: It certainly sounds like it. So how did you hear about LDN?
Margaret: My endocrinologist, who, he is a Cushing specialist. That's what he specializes in. He actually recommends it to a lot of his postop patients because most of us have these underlying autoimmune problems and he gives it out quite frequently, especially if you kind of linger in your recovery.
I mean, some people just snap right back. That wasn't me. Maybe cause I was older, not sure, but he recommended it. And my primary care doctor prescribed it for me. I ended up making my own with a 50 millilitre, uh, 50 millilitres and 50-milligram pills because my insurance doesn't cover compounding.
And that was the most economical way for me to do it. And so my primary care doctors, he's in on it too, and he actually prescribed it for me. And, um, you know, does all the followup for it for me.
Linda Elsegood: When you started, did you notice any side effects at all?
Margaret: Well, I started at 0.5.mg, cause I was doing liquid, it was really easy to change my dose based on whatever I was noticing.
So the very first thing that I noticed was that I started dreaming, like a lot, and they weren't bad dreams. They were actually amazing, wonderful dreams. But when you have Cushing's and you don't sleep for a long time, you don't dream anymore cause you never get to REM sleep. And I'd had several sleep studies. You know when I was sick but didn't know what was wrong with me.
And I never got up. I never had any REM at all. So I will say that the very first thing that happened was it gave me background sleep and I started dreaming on a regular basis. And each increase in dose I would have several days of. Just fantastical dreams, which is a good thing for me. So it's a side effect, but a good one to me.
IThey were never bad dreams or nightmares or anything like that. I did notice that on each dose increase that I would have a little bit of bowel motility, very short-lived. And when you have hormone issues. That's not unusual. You know, there's a lot of stuff going on in my body, so I don't know if I can particularly attribute it to LDN, but I think so. and it just was, you know, getting used to it. So at this point, I'm, my endo wants me to work up to four, but I'm very slowly working my way up. Right now, I'm on four, and that has been a process of about a year of getting up that high. And I stayed at three for a long time. But my Hashi titers were still very high, and so he wanted me to go up a little higher and see if we could get it to work.
Linda Elsegood: So, what is a typical day like for you now?
Margaret: Well, I attribute some of it to LDN. Some of it is just simply time. And my pituitary is recovering, but I now work full time. I am completely in control of my own life. I still have some chronic pain. It's much better. I do think that the LDN helped with the pain a lot.
It is now where I can take two Motrin a day and be pretty okay. I also use acupuncture extensively, which is, you know, it's not about LDN, but that is a huge part of my recovery as well. And I would say, you know, my life is an eight, and I work full time, probably 60 hours a week. I take my own kids to school.
I have a child in college now. And I take him to school and I grocery shop, clothing shop. I do everything now. And so it's a huge improvement from before I had surgery for my pituitary tumour. And I think LDN is probably half that. I, I won't be stopping it anytime soon.
Linda Elsegood: What would you say to other people who are thinking of trying LDN?
Margaret: You know, I think it's such, it's such a longstanding drug that's been around for so long and they know what the side effects are and it's really easy. So low risk, why not try it? And I think that's how I presented it to my primary care. I said, you know, cause he had other people on it.
And so he had heard of it. He was aware of the drug, and it's such a low dose. He just had no problem letting me try it, even if he didn't really believe in it necessarily. So I would approach it in that way. But I mean, the risks are very low and if it doesn't help, then just quit if it does and amazing.
Yeah. That's what I would say. Try it,
Linda Elsegood: You have such an amazing story and so inspirational for other people. Thank you very much. You're sharing it with us.
Margaret: Oh, you're welcome.
Any questions or comments you may have, please Contact Us. I look forward to hearing from you. Thank you for joining us today. We really appreciated your company. Until next time, stay safe and keep well.
