Season 1 Episode 6
Part 2- My experience with iron deficiency and post viral syndrome.
Hi and welcome to part 2 of a series on Women and Healthcare where I’ll be sharing my own experience earlier this year with iron deficiency and post viral syndrome…. Today I’ll be sharing what I went through and what helped me, but as in last week’s episode, before I dive in I want to give a little trigger warning, if you are someone who deals with health anxiety this episode may not be for you, having unexplained physical symptoms can be very scary and anxiety provoking. So if medical anxiety is something you struggle with you may want to skip these episodes.
The other disclaimer I want to give again is that I am not a medical doctor, this is not medical advice. I cannot guarantee that everything I share here is 100% accurate. So as I’m sharing about my personal experience and what helped me, that’s all this is. If you ever have concerns about your mental or physical health, always speak to your own healthcare providers.
So, if you haven’t listened to Part 1 of this series, I invite you to pause here and go back to listen before continuing… part of what we’ve been talking about is what happens when the medical field fails you and is not set up to thoroughly explore your concerns and help you figure out what’s going on. It is important for you to do your own research, but …. careful and mindful research. Don’t go down internet rabbit holes. Seek out information that is well established, research based, or at least check multiple sources for yourself.
And honestly regarding this, it is SO challenging to find accurate information anymore - in fact, I’ve heard it described that we are living in a ‘post truth’ era because you can literally find anything online to support your viewpoint. So, I really like to zoom out and look at all information from a neutral and curious perspective.
I took a combo approach of self-help with natural supplements and running it by MY doctor but your situation is entirely unique and you’ve got to do your own research in collaboration with your doctor.
I’ve got to be honest I’ve felt a bit nervous and reluctant to share my experience because the topic of covid is SO politically polarized here in the US especially, which is really unfortunate because it leads to our inability to look at all sides from a rational and less emotionally reactive point of view. And as I’ll be sharing more about, there is truth on all sides… it’s not an ‘either/or’ thing. Nothing in reality is - and it’s a great example of where Dialectical Thinking can help us prevent from going into extremes. (I have a blog post on Dialectical Thinking I’ll link in the show notes if you want to learn more about this, it’s a powerhouse for problem solving).
Dialectical Thinking also teaches us that truth is ever-evolving, and that is exactly the case with covid and things like the vaccine, reality is unfolding in real time, and we still don’t know everything about how either of these things impact us over time. So, trying to force a solid and defined truth about any of this stuff is really not helpful.
Also This episode is going deep into information about iron deficiency and post viral syndrome, because I’m hoping that some of you who have or are struggling with the same things, may gather some information that can help spark your OWN further research and talk to YOUR medical provider to further explore.
Because again, we’re working with a broken medical system, so we have to be our own best advocate and researcher.
OK, without further adieu, I’ll share my story from earlier this year when I was hit with these medical issues which totally intersected with and mirrored mental health symptoms (particularly anxiety). And the first thing I want to say is that I am sending out MAJOR empathy to those of you who struggle with chronic health issues. Whether it’s something that lasted for 6 months, years or a lifetime. Chronic health issues are NO JOKE. It’s hard as fuck, and it absolutely takes a toll on your mental health when you’re trying to figure shit out, feel better and just live life.
To be honest my experience was MILD compared to what I’ve heard from many others. I spent a lot of time in online forums gathering info about other people’s experiences, and I’ve talked to SO many friends and family members that have experienced post viral stuff and I know this is more common than people think.
I also want to highlight that this is not a discussion about vaccine or no vaccine, because from what I’ve learned these symptoms can happen from BOTH so we really have to drop our ‘all or nothing’ thinking about this. PLUS, it is SUCH a personalized thing. Every person’s physiology and biochemistry are entirely unique, there is NO one sized fits all solution in this case.
So before I dive in, it’s important to include the context of the underlying chronic stress I had been under, leading up to this ‘health crash’ if you want to call it that. In the year leading up to this I was in severe burnout at my job, I had just left a highly stressful work environment where I was carrying the work load of two people and working with a high needs population. The year before I had covid 2x, and illness (no matter how mild the symptoms) is a significant invisible stress on the body which we’ll dive into more. My Aunt had nearly died of covid in Fall of 2022, My cat died in February and there were other things I won’t go into that had my immune system PRE-loaded to be vulnerable. Stress has a huge impact on our immune system - which is why stress management really has to be a priority in our life.
So, in February of this year, newly self-employed, I started having strange chest sensations and what felt like heart arrhythmias or palpitations. I was also experiencing dizziness and vertigo, and I was very easily winded just going up the stairs in my house.
I have experienced anxiety in my life before and I’ve had panic attacks a few times before, especially in 2020 which was ANOTHER year where a LOT was happening in my life. But …This felt like something different. So I ended up going to the ER on two occasions, concerned I might be having a stroke or a heart attack - the whole time being open to and somewhat expecting the idea of anxiety to come up from medical providers. The first time at the ER, everything was normal.
However my primary care doctor followed up on a thyroid blood test that was a little off and discovered that I had a significant iron deficiency without anemia. I just have to say, I was very lucky that my Primary Care Doctor was very helpful through most of this and happy to order needed tests.
So, she told me to start taking oral supplements - which I discovered later through my own research was NOT going to be enough for the very low iron storage that I had.
A few weeks later I was back in the ER, and this time I had both a male doctor and male nurse and I just KNEW that the experience was not going to be positive. Going in, the female techs told me that my EKG was abnormal, then the male doctor told me it was normal (I still have the results in my patient portal that confirms an ABNORMAL EKG, remember last week when we talked about women being discharged in the middle of heart attacks?? yeah.). The male nurse gave me the typical female gaslighting, asking me if I was eating enough food or exercising ‘too much’, asking if I was having anxiety or drinking too much coffee. And they sent me home.
After this ER visit my doctor ordered a 24 hr. heart monitor holster which confirmed I was having a moderate level 5% load of PVCs (post ventricular contractions or extra / skipped heart beats). So, under 1% is normal, later I learned that 20% is when next steps for intervention are considered.
Now, I want to share what I learned about iron deficiency because there is a lot of confusion around it and many medical providers get this wrong! I spent a LoT of time in online forums taking a self-help approach to learn from others and the number of people whose doctors brush this off or refuse to do anything about it is astonishing.
First off, there are multiple blood tests that check for various iron statuses in the body and if you don’t get the right tests your doctor can’t catch the problem. Even if you do get the right tests, many doctors don’t think iron deficiency (or a low Ferritin score) is a problem until you actually become anemic… so here’s how it works.
Our body stores iron in something called your Ferritin score. Think of Ferritin as your bank of iron. You want your bank account to be full. Your iron saturation lab work, is simply how much iron is floating around in your blood, which is like how much cash you have in your wallet. You don’t want to judge your wealth on what you have in your wallet, but many doctors just look at your iron saturation to determine if you’re anemic, and completely ignore Ferritin.
When your Ferritin levels get down to zero (no storage in the bank) that’s when you go into anemia which over time can definitely kill you as it’s directly tied to cardiac function and having enough blood in your body. Iron is the most important mineral in our body, so much so that our body does not have a natural mechanism to excrete it if you have too much of it… our body only tries to hang on to it or use it. So you CAN get too much iron which is a different problem, and is why you don’t want to start supplementing iron without having your levels thoroughly checked.
Iron is used in almost every chemical process in the body: it builds blood, muscles, hormones, it is used to fight off infections (which I’m going to get to in a minute, because getting viral infections (like covid) will deplete your iron stores). Low ferritin scores, even without anemia, can cause dizziness, brain fog, deoxygenated blood, heart palpitations, anxiety like symptoms and air hunger, which is feeling like you can’t get a deep enough breath. Again, I’ve linked some articles in the show notes, but I encourage you to do your own research and talk to your doctor.
So here’s one of those situations where it’s very easy for a doctor to just tell a woman she’s being anxious, when in fact her ferritin score is way too low.
Now, here’s the crazy thing… the ‘NORMAL’ range for Ferritin is super WIDE and varies depending on the medical practice you go to: from 24 Nanograms per milliliter to 305 ng/ML. But what I discovered in all my research is that many people can start having symptoms under 150ng/ML, so doctors will be telling you you’re ‘in the normal standardized range’ but you absolutely are not in the normal range for your physiology. Remember, every body is so unique and different it really cannot be standardized completely. And here’s where the insurance companies won’t pay for a treatment or providers won’t do more thorough workups, because you’re ‘technically’ in the standard range.
So my ferritin score was 14 Nanograms per milliliter …In other words, my bank was almost empty, so no wonder I was feeling like shit.
So, How does iron deficiency happen: One major factor which impacted me is being a life long vegetarian. There are vegan sources of iron but you have to supplement and be very conscious to be sure you get enough of it. And still, I had gone my whole life without dipping into that problem range so what else can impact iron levels? As I mentioned earlier viruses (I had covid 2x the previous year so my immune system worked HARD for me, most likely using up extra iron stores I had. Viruses also majorly deplete other nutrients like B12 and B vitamins which significantly impact our neurons and nervous system … that’s our mental health too my friend! Nutrients feed our brain so it can work properly!).
But, COMING back to what else causes iron deficiency: Things like long term use of PPIs (Prilosec, Zantac, Pepcid… Fun Fact: iron needs acidity to absorb), Menstruating women due to blood loss have more iron deficiency, surgeries, pregnancy and chronic Inflammation.
I literally never knew about any of this and I learned it all through self-study… my doctor did not educate me on any of it and I actually educated her on a lot.
Thankfully, after my second trip to the ER after all my studying I requested an iron infusion instead of oral supplements and she was willing to order me one so I got 1,000ml of Dextran straight into the bloodstream, which takes about 1-2 months for your body to start fully putting to use. So, you CAN increase your ferritin score through oral supplementation, but it takes a LONG time (like a year even) and you have to take iron very specifically with a lot of Vitamin C on an empty stomach, away from coffee (again all things my medical provider never educated me on).
So, 3 days after my iron infusion I contracted covid for the 3rd time. Typical flu-like symptoms for a couple weeks, nothing major, but I never started feeling like my normal self. Apparently, according to my doctor, I was immune compromised when I contracted it due to the iron deficiency, which set me up to have post viral syndrome - also known as long covid.
Something to know here is that there are no diagnosable measures for post viral syndrome, so most doctors won’t fully acknowledge or diagnose this… but some will share what they’ve commonly seen in patients post- covid.
Basically what I came to understand is, when your body goes into such a big immune response (no matter how mild your symptoms were, there’s a lot of invisible stuff going on in your body) it takes a toll on many systems. People are reporting such a wide variety of strange and weird symptoms post-covid (AND post-vaccine)... and here’s one of those cases where many doctors don’t take EITHER seriously and it’s often stigmatized as a mental health or somatic issue.
And again, it’s not their fault. Many doctors just don’t know, they aren’t specialized in infectious disease recovery.
So, this is where mindful self-education can again be your friend. Again, keep in mind you will find a lot of conflicting information out there. My approach is to look at both the standard medical institution / pharmaceutical approach, AND equally look at the more holistic naturopathic routes… preferring to try THOSE to the fullest extent first. There is truth and value on all sides of things, and there is junk on ALL sides too so it gets tricky.
OK, Let me share the symptoms I was having:
Brain Fog (this is commonly reported, memory problems/ word retrieval)
Tinnitus
Dizziness
Chronic Fatigue ‘Post Exertional Malaise’
Internal Nerve buzzing at night, what felt like the beginning of a seizure only when I would lay down. It would wake me up repeatedly throughout the night. These are the neurological symptoms I mentioned earlier.
Insomnia
Air Hunger .. difficulty breathing, which I’ll share in a bit is related to an over-active Histamine response cause your immune system is basically on fire.
I also continued to have Heart palpitations and heart rake spikes. I would be laying still in bed and my pulse would jump up to 130 all of a sudden, and maybe 15 minutes or an hour later go back to a resting 70-80 bmp. There were a couple times that I couldn’t sleep all night because my pulse was stuck at 120-130.
Then, for periods of time I would also have a very low heart rate at like 40bpm. The term I learned is Dysautonomia where your nervous system isn’t regulating your autonomic functions as it normally would.
When I finally got to see a cardiologist like 5 months in, after many tests, he shared that he was seeing many female patients between 20-40 yrs. old experiencing the same heart rate issues. He acknowledged that he believes the virus somehow impacted hormones because it was primarily female (hormones control your heart rate by the way), and it was like covid ‘takes the brakes off your heart’. There are also many women reporting that their menstrual cycles have changed, and even going into early menopause post virus AND post-vaccine.
So… as I shared earlier, this was SO scary. It felt like my body was shutting down. And, I’m not gonna lie I wondered if I was going to die at some points. Not only did some of these symptoms feel like physiological anxiety (but in a very weird and different kind of way), having them to begin with was anxiety provoking. Having a skillset to navigate the anxiety through this literally saved me.
Before I go into what helped me recover, I’ll share the good news which is that for most people these symptoms usually subside over time (more so for the recent strains than the original strains which really took a toll on people, some of which are dealing with what look like permanent symptoms). Typically, now, it can take up to 6 months or even a year or more though, for your system to really get back to baseline.
OK, let’s dive in to what helped me:
What I’ve learned is that long-covid or post-viral syndrome acts on multiple channels in the body, One that’s similar to an autoimmune disease where your immune system is so flared it starts attacking the body itself. This happens on one level as something called Mast Cell Activation Syndrome - which is a histamine sensitivity. Basically your body starts having a histamine reaction to things you eat that may have never caused a problem for you before. You might feel shortness of breath, dizziness, even heart palpitations. What helped ME, which I learned from self-research, was taking both an H1 and H2 histamine blocker. H1 histamine blockers are things like zyrtec, benadryl or claritin. H2 histamine blockers are things like Pepcid AC which is also an antacid but it blocks histamine absorption in the gut. I noticed a huge difference when I started taking these.
Covid also seems to change your sympathetic/autonomic nervous system (controls heart rate, breathing, sweating, digestion). They have found that the spike proteins (which are in both the virus and vaccine) do cross the blood/brain barrier. They are finding inflammation in the brain as well as the spike proteins in tissues all throughout the body in autopsies.
So our amazing immune system, in attempts to remove these spike proteins and clear the virus from the body develop these Micro-Clots around the debris which leads to slightly thicker blood and poorer circulation which then impacts your brain and pretty much all regulatory systems in the body. Sadly this is what has led to strokes for many people.
One thing that I tried on my own (my doctor didn’t recommend this because using blood thinners also has a risk, especially for certain people), but I still wanted to try it… is taking low-dose baby aspirin daily. I did this for probably 3-4 weeks, and I journaled my symptoms to really test each of the things I tried. This really helped my brain fog.
Here’s something very amazing and cool… The other thing I discovered and used is a natural supplement called Nattokinase which is an ancient Japanese supplement that has been shown to dissolve dead proteins in the body, and there is one study that showed it dissolves spike proteins in a LAB environment, so no research in humans to show this yet. But, again I was taking my own natural approach and testing natural, over the counter things that felt safe enough for me. This supplement has also been used for treatment of cysts and fibroids as it dissolves them!
And let me tell you, After taking this supplement for about a week, the internal seizure-like tremors I was having stopped completely. My assumption is that Nattokinase potentially dissolved any remaining debris from the virus, which is why the nerve tremors stopped for me. I have no way to prove this, but I’ve got to share what I think helped me.
Nattokinase is also known to thin the blood, so again you should always consult your doctor before trying any natural supplement. Also it is made of fermented soy protein, and some people can’t consume that or have more of a histamine reaction to that, so another option I found was Serapeptase which acts similarly and it actually comes from the silk worm… it’s what helps dissolve their cocoon, so it also dissolves dead proteins in the body. It’s pretty fascinating what is available to us from natural sources if we do a little research. And I’m convinced this is all stuff the pharmaceutical industry obviously does not want us to know about.
The other thing that helped me, is going on an anti-inflammatory lifestyle for about 3 months. No alcohol, no coffee, I did red-light therapy at a local tanning salon 3x / week which has been shown to reduce inflammation. I started taking Spirulina supplement which is a powerful antioxidant, detoxifier and anti-inflammatory. And I ended every shower each day with 2 minutes of as cold of water I could get, taking deep breaths. Cold plunges are super powerful for anti-inflammation and regulating the nervous system.
What I learned is that re-training the nervous system was a big part of recovering. Teaching your heart rate how to regulate itself again.
I stopped any intense exercise and did only slow yoga, stretching and Tai Chi. Because of the fatigue it’s just what felt better and I read a lot about the importance of resting your body but still doing gentle movements to retrain your nervous system how to regulate itself correctly.
As I already mentioned, repleting nutrients after a virus is really key. We have to re-stock on all the things our body used, so for me that required an iron infusion (after my first 2 rounds of covid), 2 Vitamin IVs, multiple B12 injections, Omega 3’s, Vitamin D / K2 mix… and really focusing on healthy, balanced diet with lots of variety. You cannot underestimate the importance of nutrient dense food and supplements. Much of our food here in the United States is empty of actual nutrients because our soil has been depleted of nutrients, so it’s very challenging to get all your needed nutrients from diet alone.
I also supplemented with something called Glutathione which is the body’s natural detoxifier. I focused on gut-health - drinking kombucha daily and taking Pre & Pro Biotics.
So here’s something cool that I learned more about through this process. Did you know you have a second brain in your stomach? There are 200 million neurons (brain cells) in your gut & intestines. In fact a majority of your serotonin is created in your gut and our gut heath directly impacts our mental health. It’s thought that post viral syndrome has a significant impact on the gut as well and many people report digestion problems as part of their experience. It is also thought to impact serotonin channels as there are MANY reports of WEIRD anxiety & depression… And I’m describing this for myself, it felt like, not normal depression & anxiety. The only way I can describe it is feeling like my brain was inflamed and my gut was queasy all the time.
Something that absolutely blew my mind is that there are actually strains of probiotics that have been shown in research to specifically benefit your mental health! They’re called psychobiotics which I think sounds really cool. So that’s another thing to look into, and I’ve linked this in the show notes.
I’m really lucky to be feeling much better, and I’m very privileged to have been able to get the support I did get from my doctor. She helped me rule out all kinds of things and did every possible test from brain MRI to heart echogram and I think ruling out more serious, life threatening things in these cases can be so helpful to at least ease the anxiety and then focus on what you can do to heal and cope with the distress of it all.
And, This is where Mindfulness really saved me, and in next week’s episode I’m going to share with you how I got through the emotional aspects of all of this, as well as some of the research on Mindfulness and coping with chronic pain or chronic health issues.
I really hope this episode was useful to you, don’t hesitate to reach out to me personally with your experiences or any additional questions you may have. I’m always happy to connect.
On that note…. Be well my friend! Talk to you next week.
