Kay - US: Hashimoto's Thyroiditis and fibromyalgia (LDN; low dose naltrexone)

 

Linda Elsegood: Welcome to the LDN radio show brought to you by the LDN Research Trust I'm your host, Linda Elsegood. I have an exciting lineup of guest speakers who are LDN experts in their field. We will be discussing low-dose naltrexone and its many uses in autoimmune diseases, cancers, etc. Thank you for joining us.

Linda: Today we're joined by Kay from the United States who uses LDN for Hashimoto's Thyroiditis and fibromyalgia. Thank you for joining us today. Kaye. Thank you for having me. So could you tell us how long ago was it when you first got sick?

Kay: Honestly it was probably 40 years ago. I'm 58 now and when I completed high school, I started having symptoms of thyroid problems. So it was it was a very long time. So what did they do at that time, such a long while ago? They told me it was anxiety and they totally the doctor totally blew it off and they never did any sort of testing. They never did blood tests. They didn't do an ultrasound; they didn't do anything. Even though I had a constant sense of a lump in my throat and issues with sleeping and anxiety, and quite a number of issues that come with thyroid problems. And it wasn't until after I was married and I had two young children and I was working full-time that I just simply got to the point where I just felt like I couldn't function. And I went to the doctor. And he finally took it seriously. That was a different doctor, but unfortunately my labs for my thyroiditis all they ran was simply the TSH and they said, oh you're perfectly fine and they diagnosed me with fibromyalgia at that time. So I was kind of stuck with that diagnosis for a period of time as well, without any real good answers at that time.

And that kind of progressed, and it was probably another five years or so before anything more significant came out of that. I noticed one day a very large lump in my throat and went to the doctor, ended up with a surgeon and had my thyroid removed, and they diagnosed me as having Hashimoto's. I had two different types of growths on my thyroid and a very large cyst, and the surgeon actually said that it was the most diseased thyroid he had ever seen, and he was absolutely convinced it was cancerous. It turned out not to be, but it was clear why I had been so ill and having so much difficulty in functioning at that point. 

Linda: Wow. So what did they put you on once they removed the thyroid? 

Kay: They simply put me on just a T-4 only medicine and I felt absolutely terrible, and I literally thought that I was going to die. I thought the doctors were going to let me die. At that point my children were probably 14 and 16, and I simply just hoped and prayed that I would live long enough to see them graduate from high school. That that was how bad I felt.  I could I could hardly function. I was continuing to work full-time because I needed to, but I did not have any emotional capacity to deal with raising teenagers and having a husband and living life. It was just incredibly difficult and I just started googling and looking for answers, and thank goodness for the internet these days, right, because you know we can find stuff we couldn't find before So, I ended up at a doctor that was more holistically minded, and that doctor put me on Armour thyroid, so I had the T-3 and the T-4, and I started to feel like okay, I can live now; I can start to function. But I was still having a lot of issues, a lot of fibromyalgia pain.  I was having terrible insomnia. I was on multiple medicines to sleep. Dealing with a lot of anxiety, IBS, TMJ; I've got a laundry list of acronyms that I was dealing with. I came upon low-dose naltrexone myself, and I approached my doctor and asked her if she would prescribe it and she said yes, that she had a number of patients on it and she was happy to prescribe it.  So I kind of got lucky in getting a prescription for it. 

Linda: How did it affect you when you first started? 

Kay: When I first started taking it, really the only side effect I had was just vivid dreams. And I think I started it I 1.5 milligrams. That was fine. Did that for two weeks, bumped to 3 milligrams. That was fine, and did that for a couple weeks. Then when I bumped to 4.5 milligrams, I started to have some of the vivid dreams, and I bounced back and forth between 3 milligrams and 4.5 milligrams for a couple of weeks until I could just consistently stay at 4.5 milligrams.

Linda: And how long ago was that?  

Kay: That that was about 12 years ago. 

Linda: Well so you've been on LDN a long time.  

Kay: I have been quite a while, and I'm still on it. 

Linda: And do you have any thyroid issues now at all?  

Kay: I'm still dealing with some issues. About 4 years ago I ended up exiting a very toxic marriage, and doing that helped tremendously in reducing the amount of stress and anxiety in my life. I ended up changing to a different doctor, who really encouraged me to change my diet dramatically. So I eliminated all grains and all sugar, and that has helped tremendously. Reducing the stress, getting out of a toxic environment is huge. Just the emotional stress that happens takes a very physical toll on our bodies, and I think that often we underestimate the impact of it. And so for me, low dose naltrexone is part of a bigger package of things that I do to take care of myself. It wasn't the magic elixir that solved my whole life problems, because I had a number of things going on in my body, and a number of things going on in my life that needed additional changes to really create an impact.

Linda: What about the fibromyalgia pain? Is that under control? 

Kay: It is really under control. I'm struggling with a torn rotator cuff, and so another problem like that, it still throws your body off. As you age other things start to go awry as well. But no as far as fibromyalgia goes; no I don't really have any fibromyalgia pain. In fact three weeks ago, I went on a hiking trip with a friend and I had no pain and no stiffness and no soreness after hiking like 15 miles a day through fairly rugged terrain. 

Linda: So that speaks volumes, doesn't it? 

Kay: It does speak volumes.

Linda: Now I probably know the answer to this question because you spoke about diet, which was going to be one of my questions. But because your doctor was looking at your whole body, not just your symptoms, did she recommend supplements for you to take as well?

Kay: This doctor is a male; it's different. He also was willing to prescribe low dose naltrexone, and he knows what supplements I am on, and he has not necessarily recommended that I change them, or that I add to it. I am on a number of supplements.

Linda: Do you take probiotics?

Kay: I do take probiotics. I also take magnesium, Vitamin C, Vitamin D3 and K2. Those are kind of my staples.

Linda: Yes, when I ask doctors what supplements they recommend, probiotics is always up there as the top one, as is Vitamin D. You're doing remarkably well. I can't believe that somebody who must have been like 14 at the time, had all these problems, and they were just swept under the carpet. But so many people tell me that years ago, and not that many years ago either, that it's all in your mind; there's nothing wrong with you; it's all in your mind, or you're depressed and give you antidepressants rather than finding out why you've got the symptoms, finding the root cause. I'm just so pleased that you have managed now to get your life back on track where you feel you're in control and you can enjoy a good quality of life 

Kay: Honestly I feel better now than I did 20 years ago. I have I have no anxiety anymore; I used to have a lot of anxiety. I had issues with sleeping; I am off all of my sleeping meds; I only use melatonin now for sleep. I used to live on over-the-counter pain medicines, Tylenol, ibuprofen; I only take them very very rarely now; maybe once a month rather than three times a day or more. Just so many things that have resolved.

Linda: That's amazing, because all the medications that you can take, some of them are quite toxic and also all medications carry the risk of some side effects, and the more medicines you take, the higher the risk of getting side effects, and then you end up taking the magic pill to combat the side effects that the original pills have made. So to actually cleanse your body of all of these other medications that you're taking, even though you're 20 years older now, you said you felt better; your body is 20 years older, but you're still feeling better than you did 20 years ago. That's amazing, isn't it? Apart from your shoulders - hopefully that will heal soon. How did you hurt it?  

Kay: I had a bone spur that tore the supraspinatus, which caused too much stress on the infraspinatus and so that one also had a tear, and kind of the whole the whole shoulder system just went downhill. We're still working on that. 

Linda: So you just want to rest it.  Are you, as much as you can? 

Kay: Trying to rest it, and then also exercise it and strengthen it, it’s working well. 

Linda: Well that's it: if you don't use it completely, you lose it. Well thank you very much for sharing your story with us today, Kay. Very remarkable. You're an amazing lady. 

Kay: Oh thank you, thank you. Now I just wish everyone well who tries the low dose naltrexone. Just don't underestimate the impact of changing little things in your life, because lots of little things add up to significant differences.

Any questions or comments you may have please email me, Linda, at linda@ldnrt.org. 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.