WELLNESS WEDNESDAY

Hey folks, Sally Riggs here, psychologist, fellow long hauler, and your Long COVID Coach, and welcome to another Wellness Wednesday. Today I want to talk a little bit more about medical issues and the medical side of Long COVID. Under the heading of treatment decision overwhelm, and trusting your gut.

I know that this is an issue that comes up for us a lot. And I wanted to share a little bit about something that's happening in my own treatment right now, that really illustrates this nicely. So first of all, apologies in advance, I'm going to share some personal information about my medical history, which I know back in the day, pre-COVID, none of us were talking about our medical history on the internet. And yet now, we are all an open book. And it's enormously helpful for you to know details of my medical history in order to be able to think about your own treatment.

So with that in mind, I got some blood work done on Friday morning. I am doing much better these days, I had seen my primary and she said well, let's repeat some of these things we did a year ago. And of course, I was thinking that wouldn't be terribly much to look at. And boy, was I wrong. Good old Long COVID never ceases to amaze me in terms of how it keeps us on its toes and how little we actually know. And I share this not to be despairing or hopeless, but to remind us that if you are working with any type of physician that tells you that they do know, then they're making it up. And for that reason, it is super important for us to be able to trust our own gut on treatment decisions.

So a little bit more info about what happened with my bloodwork. It came back very quickly on Saturday morning and significant things that were notable. I have a history of underactive thyroid, probably my whole life, it was diagnosed in my 20s. So I have taken Thyroxin as it's called in the UK, Synthroid as it's called in the US for decades. And yet, as many of us have found with Long COVID, either those who didn't have pre-existing thyroid issues now do take Thyroxin or those of us who did have now take a much higher dose. So since Long COVID started, we've checked my thyroid routinely and each time, I've edged up my dose of Thyroxin.

And this time, my TSH levels, which is thyroid stimulating hormone, which is an indicator that your body is not getting enough Thyroxin was through the roof. And by through the roof. I mean, they didn't even bother putting that nice little scale on the bottom of the results. Because my number was so far off the top of the scale beyond the normal range and the little buffer that they put that it wouldn't have fit on there. So much so that my GP primary care physician messaged me to say, "Did you run out of your Synthroid? Because these numbers don't make any sense?" And I was like, "No, no, no, I've been taking it religiously every day, every morning".

But that's what Long COVID does. These numbers don't make any sense. And my doc is very clued up on COVID and one of the few people who knows what she's talking about has done tons of research works with an awful lot of people with lung COVID in New York City. And yet, these numbers still confused her and she didn't have a logical explanation for them. And time was when that would have meant a referral to another specialist and we'd go down, you know, the wild goose chase of trying to figure out what it was and I'd wait 2, 3, 4, 5 months for an appointment with that specialist and I'd see them and they'd do a whole another bunch of blood tests, and then they would come back and they'd say, "Oh, gosh, I don't really know anything about Long COVID". Well, thankfully, we don't do that anymore because I save myself the hassle. But hopefully, this is a relatively easy fix, we just dropped my dose of thyroxin, and we carry on.

And I'm not thinking about "Oh, my goodness, long term. What does this mean?" Because in all honesty, mindset is really important, and I really try not to catastrophize. There isn't anything to catastrophize here, we can fix it. Another notable result was that my cholesterol is also incredibly high. Never in my lifetime, if I had anything but normal or even low cholesterol, and I eat incredibly healthily, I have been gluten-free and dairy free, and quite a few other things free for about 20, more than 20 years, and recently have been incredibly fastidious about sugar, et cetera, et cetera, cetera. So I certainly don't eat processed food, I certainly don't eat anything that's high in trans fatty acids. And I can't imagine why my cholesterol would be high. And I reached out to a few other people in the Long COVID community. And I said, Hey, I've got high cholesterol, or have you ever heard of anybody having that for no reason, every single one of them told me they had high cholesterol, and it was completely unexplained too.

So what this tells me is, there's a few things in the back of my mind about my treatment that for a few months, I hadn't really felt comfortable about. And this is a nice reminder that doctors don't know anything. And that's not, again, because I want to be hopeless, but it is a nice reminder if they don't know anything, then I probably know as much as them if not more. So if I want to make a treatment about my own decision about my own treatment based on my body and how my body feels, then I have every right to do so. And I cannot be told I'm going against medical advice, because medical advice does not know what it's talking about.

Couple of things come to mind about this. I have been working with a new functional med person since September last year. And he also gives me recommendations on diet and supplements. And I've not spoken on here but lots of people have been quite outspoken in the Long COVID community about supplements. That, in a way, supplements are really like just throwing a whole bunch of things at the wall and seeing what sticks, that the science around them for us doesn't seem to be terribly precise. And I certainly in my own treatment history, there are several medical things that have made a big difference. Supplements has never been one of them, and yet I still take them as I think many of us do fistfuls of them because we worry if we stopped we'd get significantly worse. And also, because there aren't enough days in the year to do a proper informed experiment, taking one away and seeing how we feel and seeing if it really is necessary, and so we just continue.

But I've definitely been feeling recently, partly because of the nausea that I experience on an ongoing daily basis. And you've heard me talk about that before. And I'm pretty sure now that that is due to the huge number of supplements that I'm taking in the morning, that maybe there might be a way for me to cut that down. And the other thing that I've been thinking a lot about recently is weight gain. I my weight, like many of yours has fluctuated throughout my Long COVID journey, but predominantly, much heavier than I have typically been as an athlete, previously, I was running a lot, obviously, my weight was going to be a lot less. And I was also doing a lot of strength training, and so my body shape was obviously going to be a lot different. And I appreciate that, I think we all do. We're dealing with a lot of things and I can't expect my body to look exactly like it did when I was running ultra marathons.

But more recently, I've gained a lot of weight back again, and I'm now two sizes bigger than my norm, which as someone who has been the same size her whole lifetime has made it very difficult for me to get dressed in the morning because previously I had invested in a few slightly bigger things thinking that hopefully sooner we'll get back to my normal weight Not wanting to waste hundreds of dollars on things that I won't wear again, and now none of those things fit me either. And I've had to buy things in other big size. And it's not about the number, it's just about not having any clothes to wear. And when you get dressed in the morning and open the closet, it's very depressing, actually not having clothes that you can put on, or putting on closer to small that then squash your stomach. And guess what I've got nausea, so squash stomach isn't really going to help with that.

But guess what? Functional medicine doc told me that I should be eating more carbohydrates, and slowly over the last few months has been trying to encourage me to up my calorie intake and up my carbohydrate intake. And I wasn't convinced that that was the right thing for my body. And I've gained weight that I also get incredibly sleepy after I eat any type of carbohydrate. And I took the executive decision a week ago that I was going to go back on the keto diet that I did incredibly well. I didn't tell my doc, I just started and amazingly a week in I feel great, and I've had a lot of energy over the weekend. And then seeing these numbers, I'm reminded that there's something going on with my thyroid, no wonder I have gained weight.

One of the things that this doctor had said to me going back through my medication list was, "Some of the things that you're taking for prescribed med, Sally may not help with you losing weight. And for example, aspirin, I'm really not very comfortable with you taking baby aspirin". Well, I don't know about you probably most of you are also taking baby aspirin, but I'm not very comfortable not taking baby aspirin. Because I know that micro clots are a big deal in Long COVID. And I know that anticoagulants have been incredibly beneficial to my recovery. So I was thinking, I don't really want to do this. But wasn't really feeling bold enough to say no. And these blood results have really given me the confidence to go back and say to myself, "No, your body knows, respect your body, do what your body says. And these Docs are even less informed than you are, you cannot defer to them". And I don't mean that with any disrespect, because it is a lot to be up to speed with Long COVID. And I fully appreciate that.

But I just wanted to share a little bit about my thoughts. Interestingly, I have also been doing some functional medicine training over the last six weeks, because I wanted working with clients with Long COVID to understand more of what is happening here. And fascinatingly, I am finding with each module that we cover each week, that on the one hand, I'm thinking, "Wow, this is so interesting and so relevant, and people that have MECFS, or people who have autoimmune or people who have other chronic illnesses". And yet at the same time every week I'm thinking, "But this isn't really relevant to Long COVID is it?" And every time I have a question for the instructor, who is a physician herself, and has a very long history of MECFS, and personally and has been working in this field, ever since has done a ton of research. And yet I keep finding myself saying, "But what about Long COVID? But what about Long COVID? But what about Long COVID?" Because it doesn't fit in this lovely mold.

And so my reason for sharing this today, I know that many, many, many of you are working with functional medicine specialists. And I'm not suggesting that you stop. What I am suggesting is if something doesn't feel right for you, you honor that, because in all honesty, they don't know any more than we do. And we know our own bodies. So I challenge you today if there's something in your treatment that you don't feel comfortable with, either to let your doc know that you're not going to do that, or like I've been doing in the last 10 days, just keeping that to yourself, although obviously, it's now not to myself because it's on the internet, but we can make our own treatment decisions and we also don't have to tell our doctors.

If there's something that you would like to talk to me in more detail about that we've covered today or in previous weeks with these videos. Do feel free to schedule a discovery call out and the link to do so is underneath. And our YouTube channel is now up and running and in addition to these lovely Wellness Wednesday videos that you can go back and watch all the way from week one. So if you're just getting this in recent weeks, because you only just subscribed, and you want to have a chance to see some of the older videos, or you want to share some of these videos with friends of yours, you can do that from the YouTube channel. And there's also some additional material from an interview that I did recently with Close Up Television, talking about Polyvagal theory talking about the Safe and Sound Protocol, talking about my recovery journey, and what it's like to work with me. So feel free to check all of that out. And if you like it, we'd love if you would subscribe to the channel because that really helps us in terms of building things going forward.

I hope you have a tolerable week and I'll see you again for another Wellness Wednesday.