My Medication Nightmare: What Should You do if You Run out of Your Medication

empty prescription bottles, out of meds, what to do if you run out of medication, tips, hashimoto's, thyroid, symptoms

We’ve all been there. Something goes wrong somewhere and it delays us being able to get the medicines we’ve come to rely on to make it through each day. Maybe it’s a problem with a doctor writing a prescription in time before you run out. Maybe you have the physical prescription, but the pharmacy it out of the medication and needs to order it. Maybe funds are tight, like they are for many of us, and you just can’t afford the medication. It could really be any reason, but most of us have had times when this has been an issue. So now what?

My medication nightmare began over a month ago. I live in the Canary Islands, near Spain, but I order the thyroid supplement I take for my Hashimoto’s through a company in the United States. Since it’s being shipped internationally and has to go through customs, I am always sure to allow plenty of extra time. I’ve never had a problem, until now that is. It’s been over a month and I still have not been able to receive my medication. No matter what I do, I seem to hit another roadblock. At this point, I’ve actually cancelled the order and attempted to reorder in hopes I won’t have the same issues, as I’ve never encountered this problem before, but only time will tell.

So what can you do if you run out of a medication? Hopefully, you’ll never be in this predicament, but if you are, here are some things to try.

First, try to avoid the problem. It happens. Many of us take multiple medications throughout the day. It’s easy to lose track of how many pills you need to make it through the week. You look at the bottle and think you’ll be okay, until, before you know it, you’re down to your last pills. If you can, try to order the medication before you’ll actually be out of it. This will also allow time for the pharmacy to order it if necessary. Some pharmacies have automatic refills to help with this, but a good way to ensure you won’t run out is to make a habit of reordering the prescription a week before the date it was last filled. For example, if you last filled your prescription on the 20th of the month, reorder it on the 13th of the next month. Set a reminder if you need to.

Second, pay attention to how many refills you have left. Often with chronic illnesses, you may take a specific medication for months or years on end. With the exception of pain medications, doctors will often allow multiple refills on a single prescription. Try to pay attention to this so you’re not trying to refill a prescription when no refills are available. Even when you or your pharmacist notices a new prescription is needed, the doctor’s office may not be able to fulfill the request immediately for any number of reasons. Therefore, it’s important to allow time for this. The one week rule from the previous paragraph works well here too. Ideally, you may have realized the need at your last appointment and requested the prescription then, but allowing the week buffer leaves enough time for your pharmacist to contact the doctor and the doctor to respond.

empty prescription bottle, time to refill, out of medication, tips, pharmacist, what to do if you run out of meds, hashimoto,'s, thyroid

But what if you miscalculate or are even away from home and run out of your medication? Or maybe it’s a weekend and your doctor’s office it closed? There are a few things you can do. If you’re using your home pharmacy and have a history of taking a particular medication, your pharmacist may be able to give you an emergency supply of the medication, or just enough to make it through a couple of days until a prescription can be attained. You can also take the original bottle from the prescription into another pharmacy and, providing you have refills, the can fill the prescription or contact the prescribing doctor or even an on-call doctor when necessary. In a pinch, you may also be able to find a walk-in clinic and have the doctor there address your prescription needs.

Even with all of this in mind, sometimes life happens and you’re stuck without your meds. As a chronic illness sufferer, I know that with some of my medications, even just missing a single dose can make a huge difference. Then, of course, dealing with the resulting flare can be horrific and impact every aspect of life, from sleep habits, to brain fog, to eating, and participating in daily activities. This is the position I currently find myself in.

pharmacy. pharmacist, medication, prescriptions, out of medication, tips, emergency, what to do, hashimoto's, thyroid

As I said earlier, I’ve been waiting for my thyroid supplement for over a month, but it’s caught up in customs. Initially, I tried rationing my medication to try to make it last longer in hopes that my order would arrive from the US. I would either take less doses each day or take smaller doses to stretch out what I had left. I figured something was better than nothing and really expected this to be a temporary situation. My body can definitely tell the difference. Even with the smaller doses, I was much more tired than usual, experienced more migraines, and just generally had more pain.

Now I’ve been without my medication for a while, and my body is not happy. I’ve become virtually dysfunctional. My fatigue is unending and the pain is unbearable. It’s hard for me to complete work, do household tasks, and even spend time with my daughter. All I want to do is stay in bed all day.

thyroid, hashimoto's, hypothyroid, hyperthyroid, medication, effects of not taking meds, symptoms

As much as I’d love to build a blanket fort and not come out until this nightmare is over, life must go on. For me right now, that means trying to organize my house and make it more livable as I’ve recently moved. I don’t feel well. Like I said, I’m exhausted, weak, and in pain, which is making it difficult to focus on even basic tasks. In the life of a Chargie, these factors can lead to disaster.

Not being able to take my medications has effected me in ways I would have never imagined. Recently, I was trying to make my house a little less chaotic and more settled after my move. I decided I would at least try to get rid of some of the empty boxes scattered throughout my house, as I thought this task required very little energy or concentration. Well, Things didn’t quite go as I had planned.

out of meds, symptoms, migraine, fatigue, weakness, pain, exhaustion, hashimoto's

I was attempting to fold a larger box to get it out of the way. Like I said, I’ve been feeling weak and my dexterity is waning from being off of my meds for so long, so the box slipped out of my hands. I bent down to try to catch it, when SMACK!!! I hit my head on the corner of a cabinet. OUCH!!! As if I didn’t already have enough problems, I managed to give myself a concussion. Even the most menial tasks can require Herculean effort on a bad day. For more on this story, check out my YouTube video above.

Through all this pain and aggravation, I did learn a few things. First, plan ahead. Normally, I do this, but this time it wasn’t enough as my meds are still being held hostage. Maybe now I know that what I thought was more than sufficient time may not be. Second, have a Plan B. In my case, there’s really not much more I could have done for this particular medicine, but it’s good to know alternatives if you do find yourself out of a medication. Panic and stress will only make everything worse. Most importantly, if you do find yourself in this situation, be gentle with yourself. If you are already in a vulnerable and weakened position from being without your meds, pushing yourself will generally make you feel worse. While yes, life has to go on to some extent, pick and choose your battles so you don’t make your flare worse than it needs to be. Everything else will still be there when you’re feeling better.

missed medication, hashimoto's, thyroid, tips, self care, symptoms

My Celiac Story: How I Found Out my Entire Family has Celiac Disease

celiac disease, gluten, elimination diet, autoimmune protocol diet, autoimmune disease

Let’s Start at the Beginning

I have had stomach problems since I was a teenager, but I took me a until I was in my thirties to figure out the cause of my issues was actually Celiac Disease. As a teenager, I always had terrible cramps and acid reflux. By the time I was sixteen, my doctor put me in acid blockers to try to control my symptoms. I took the medicine every day for years and it helped, but my symptoms still persisted. Being that I was sixteen, the doctor’s attributed the cramps to my monthly cycle and figured the acid blockers would resolve the rest. But they didn’t. I eventually just learned to live with the symptoms and go about my life. I thought this is just how my life would have to be. After all, I was feeling better, just not good.

When I was about twenty, my cramps became even stronger and more frequent and I was having trouble coping with the pain. I once again returned to my doctor, and he suggested that I do an elimination diet to see if what I was eating may be contributing to my symptoms. He suggested I replace the multigrain bread I normally ate with plain white bread or spelt which would be easier to digest and that I should eat a lot of yogurt, which has good probiotics and is easy to digest. He also prescribed a medication to help with the cramps. I made the dietary changes, took the medication, and it helped a little, but I was still suffering.

It’s Hard to Work when You’re Chronically Ill

While I was trying to figure out the cause of my gastrointestinal issues, I was also working a full-time job at a call center. This was the type of job that required you to clock in and out every time you took any kind of break. Even if you were just going to the bathroom, you were required to clock out when you left and back in when you returned. My symptoms had gotten so bad that I would have to go to the bathroom six or more times a day and I could be in there for ten minutes each time. Well, my employer took notice of this and I was called in for a meeting. As much as I tried to explain that I was legitimately ill and couldn’t help it, all my employer saw was the time and my contract was not renewed. After about six months, this extreme flare finally calmed down. My stomach ache and acid reflux were just a part of my everyday life, but we’re not so bad that it was disruptive to my day or my life.

celiac, bloating, acid reflux, abdominal pain

On Vacation, but not from my Symptoms

Some time passed and now I was about 26 and I went on a vacation to the Azores, Portuguese islands in the middle of the Atlantic Ocean. I looked 4 months pregnant! My stomach was extremely swollen and it hurt a lot. I had been been living on antacids and other medicines, but nothing was really working anymore. At the time, I thought my body may be reacting to the different foods I was eating. In this area, they tend to prepare everything using a lot of butter and I had stopped eating butter years ago, so I thought I must not be used to it anymore and that’s what was probably causing my reaction. I was convinced the butter was the cause of my problems. Even when I just ate a salad, which obviously had no butter, I still felt really badly. It was so extreme. I was only there for a week or two, but when I showed people pictures from my trip, my physical transformation was so drastic that people would ask me if I really was pregnant.

celiac disease, stomach pain, bloating, cramps, acid reflux, gluten, diet

I didn’t know what was going on. As chronic illness life goes, you get some bad days, then you get some good days. Every year you have is different. Still, I was undiagnosed and I went on with my life. All the while, I kept taking stomach liners, acid blockers, and other medicines for my bowels. This became my daily regimen in order to live without constant abdominal pains and cramps.

Making Changes

Some more time past and now I was 31 or 32 years old. I started researching more into my health and looking into natural remedies and the holistic way of living. I wanted to change my lifestyle to try to feel better. I had stopped eating sugar years prior and it made me feel so much better, but I noticed after a couple of years, the effects of that wore off or something. I decided to make some other changes I hoped of regaining that feeling. I knew I had to do something drastic. That’s when I started the autoimmune protocol diet. For this diet, you cut out all sugar, lactose, gluten, rice, seeds, and beans and then slowly start reintroducing them back into your diet to see which ones are aggravating your body. For me, cutting out gluten was the hardest. I’d literally dream of bread and croissants and pizza. It was crazy!

celiac, diet, autoimmune protocol diet, elimination diet, gluten, food allergies

After being on the autoimmune protocol diet for about 3 or 4 months, I really did start to feel better and I tried to introduce things back into my diet. During that time, I would get together with a group of friends monthly, and we would cook and eat dinner together. This day, we each brought something to be grilled and so we would all prepare the food and then share it amongst the group. One of my friends made something breaded. I don’t remember what is was, but it was being cooked on the same grill with everything else. As I was still not eating gluten, I did not eat the breaded food, but instead partook in the other options. but it was in the same grill.

By the time I got home and I was so sick! I got cramps and I had major brain fog. I couldn’t think straight. I was sweating profusely and was sick and exhausted for three days. I thought this was an extreme reaction, so I started doing research into what could have caused it. That’s when I discover the cross-contamination that can occur with gluten. Still, I was surprised that I had such a strong reaction. I learned that this is actual quite normal when someone is exposed to gluten after long periods of time without it.

My Daughter is Following in my Footsteps

About six months later, I noticed my daughter, who was about four at the time, was very tired and cranky all the time. She was a picky eater and would only really eat bread, potatoes, doughnuts, and of course candy. This seemed strange to me, so I brought her to he pediatrician thinking she may have picked up a bacteria or parasite somehow. We went to the doctor and had her tested, but the tests were negative for any bacteria or parasites. Still, I knew something had to be wrong, so I asked her doctor what else could be done. He told me there were two things we could try. The first option was to virtually turn her inside out running tests to look for anything and everything. Since she was still so young, her doctor thought that would be extreme. The second option was far less invasive. He suggested eliminating gluten for about two weeks to see how she responded. This made a lot of sense to me in light of my own experiences with gluten, so we decided to give it a try.

kids, celiac, symptoms, gluten

Going gluten-free was very upsetting to my daughter at first. She had seen the strict autoimmune protocol diet that I had been following and thought that was what she would have to do too. I explained to her that what she was doing was not nearly as strict. She would not have to give up everything, only the gluten. Over the next three days, we finished all the bread and doughnuts and other gluten-containing foods in the house and went 100% gluten-free. The rest of my family wanted to support, so they stopped eating gluten too so she wouldn’t feel so badly. Her dad, my mom (her grandma), and my sister (her aunt) all gave up gluten so my daughter wouldn’t feel alone.

After four days, I had a different child. She had energy and was not so cranky. I could hardly believe the difference! Just by not eating bread, cookies and other gluten-containing foods, I had my daughter back. I still let her have some treats, like cake, but she ate the gluten-free kind instead, as I wanted her to still be able to eat similar foods to what she was used to. After a month, we went back to the doctor to report how it had gone. The doctor said that her improvements indicated that she has celiac disease.

It’s in my Genes!

By this time, my daughter was feeling better and had gotten accustomed to eating the gluten-free foods, so my mom and sister thought it would be okay for them to go back to eating the regular bread and other foods they had given up to support my daughter, but their bodies had other plans. When they ate regular bread again, they got really sick. Unbeknownst to all of us, we all had celiac disease.

It all made sense now. As a baby, my daughter had the worst acid reflux. She couldn’t hold her milk down and she never wanted to eat the porridge. It was difficult to make her eat stuff because she couldn’t keep it down. Thankfully, now we know why. She had been diagnosed with celiac when she was 4 and now we know that it tends to run in the families.

autoimmine, causes, genes, celiac, environment

Everything is Starting to Make Sense Now

It took me over 30 years to figure out that I have celiac disease. I believe that many of my autoimmune issues stem from me having undiagnosed celiac disease. Celiac disease is an autoimmune disease in which your own immune cells track the gluten enzymes within your small intestine. Your body is basically attacking itself. Looking at my timeline of all my diagnosis, I think this could be the cause of many of my chronic illnesses. I started having my Graves symptoms at 16, but I only got diagnosed at 19. Then at 28, I had Hashimoto’s Disease that went undiagnosed for about 6 years. After my Hashimoto’s diagnosis, I started having Raynaud’s disease, which is also an autoimmune disease that effects blood flow. If you don’t figure out what’s causing autoimmune conditions, they have a tendency to accumulate. Since I discovered my celiac disease so late, I wonder if that may have been the catalyst for my other conditions. I may never know.

I hope my family’s story helped you in some way. I know by sharing my experiences with my own family, my mom and sister have given up gluten and are now feeling better. It’s not for everyone though. Some people have experimented with going gluten-free to try to lose weight or think it’s the cure for any ailment, but it’s not. Going gluten-free is not necessary for everyone. If you think you may have celiac or be gluten intolerant, talk to your doctor and consider trying an elimination diet to find out. Some people can eat gluten with no problems, but for those with celiac, it is a real and serious autoimmune condition that effects their daily life and not just another dietary fad.

celiac disease, autoimmune disease, diet, genetics, gluten

My Adrenal Fatigue Story: How to Recognize Adrenal Fatigue

adrenal fatigue, tips, adrenal cocktail

Have you ever felt so exhausted that you just can’t seem to regain energy no matter how much you sleep or how balanced your diet is? If so, you may be experiencing adrenal fatigue. Adrenal fatigue is when the adrenal glands are exhausted and unable to produce adequate quantities of hormones, primarily cortisol, due to chronic stress or infections. Adrenal fatigue is a term to encompass a collection of nonspecific symptoms, such as body aches, fatigue, nervousness, sleep disturbances, low blood pressure, and digestive problems that can occur when adrenal hormones are insufficient.

I’m so Exhausted!

I’ve experienced adrenal fatigue numerous times. In fact, I am currently experiencing an episode and am actually annoyed with myself for not realizing and treating it sooner. I have been exhausted, but more so than my normal exhaustion. I wake up exhausted and there’s nothing I can do to regain energy. I am dragging all day, but then very awake at night and cannot fall asleep. My eyes, hands, and feet get very swollen and puffy. I also get intense salt cravings where all I want to eat is salty chips and popcorn to satisfy this craving. I actually went to the grocery store this morning and wanted to buy a bag of chips to eat for breakfast. That’s how intense my salt cravings can be.

exhaustion, adrenal fatigue, hashimoto's

You may be wondering how I figured out that all of these symptoms were actually because of adrenal fatigue. Years ago when I was diagnosed with Hashimoto’s, I was also tested for adrenal fatigue, but I did not realize that at the time. I was not diagnosed with Hashimoto’s in a typical way, but rather as the result of my own detective work and with the help of a nurse practitioner I had met through a Facebook group at the time. I had some labs done locally, and she helped me interpret them and I eventually flew to see her in California for further testing and diagnosis. It was during this visit that I did a spit test for cortisol and my adrenal fatigue was detected.

The Answer’s in my Spit!

During the spit test, you collect samples through a 24-hour period in order to see how your cortisol levels change throughout the day. My test came back that my cortisol in the morning was super high, but then be completely depleted and eventually spike up again. It was all over the place. I found out that this is what what causing my salt cravings and irregular sleeping patterns.
By the time I knew it was adrenal fatigue, I was happy that it had a name, but still didn’t really understand how having the diagnosis would help me get through it. With the help of my nurse practitioner, we figured out a regimen that works for me.

She told me to start drinking “adrenaline cocktails” and instructed me on how to prepare them. She said to mix orange (apple or cranberry) juice (preferably, fresh-squeezed, but packaged it okay) with ½ to a whole teaspoon of salt and ¼ to ½ teaspoon of cream of tartar and then to drink this concoction. The juice provides a quick source of sugar and nutrients, the salt, sodium, and the cream of tartar, potassium, which tend to be lacking during episodes of adrenal fatigue. This cocktail allows all these things to be replaced quickly.

Mmmm….Adrenal Cocktail

I know what you’re probably thinking: Gross! Who could actually drink that concoction and not get sick? That’s actually a good way to figure out if you have adrenal fatigue. If you suspect you have it, make the cocktail and take a sip. It it actually tastes good to you, you most likely have adrenal fatigue. If it tastes very salty and disgusting, then something else is likely causing your fatigue. Obviously I’m not a doctor, but this is just an at home test that you can try yourself. If you think your suspicion may be correct, contact your doctor and request the spit test to have it confirmed.

adrenal fatigue, adrenal cocktail

Replace and Restore

I usually drink the adrenal cocktail right away when I wake up, as that is when it will help balance the adrenals and give more energy. I few minutes later, I already feel a little better, as if I have just taken a nap. I feel more rested and like I have more energy. Depending on how bad your adrenal fatigue is, you can drink this cocktail up to three times per day. Since I may not know when I’ll have an episode, I usually carry packets of salt with me when I’m out and about and then buy some juice and mix it in. For me, it a very efficient way to balance my adrenals and restore energy. The effects usually last a couple of hours, so it allows me to continue going about my day.

Another supplement that I take to help balance my adrenals is called Ashwaganda. Initially, I didn’t think it was helping, but took it because my nurse practitioner advised me too, but when I stopped taking it for a couple of months, I actually noticed a big difference. I also take B supplements, specifically, B6 and B12, because they help with your adrenals and provide energy. For me personally, I also take supplements to help balance my thyroid antibodies, as they are very high as a result of my Hashimoto’s. This supplement is called Tythrophen PMG. Using this helped decrease my thyroid antibodies, which calmed my body down and made my adrenals not have to work as hard anymore. This combination really helps me recover from episodes of adrenal fatigue.

vitamins, supplements, adrenal fatigue

The final tip I have was also recommended by my nurse practitioner. Before I go to sleep every night, I take 150 mg of magnesium. It helps with sleep as well as helps regenerate your muscles, which also benefits my fibromyalgia. It can also help with migraines, so when I am experiencing a migraine, I will actually increase my dose.

Finding Balance

Through the years, I have learned to recognize when I’m having an episode of adrenal fatigue. When I went to the supermarket this morning and bought the bag of chips again intending to eat it for breakfast, I was able to stop myself. I told myself the adrenal cocktail will be better as that will actually help me rather than just trying to fulfill a craving. I’ve learned that intense cravings like this are often because your body is trying to fulfill a need for something missing, in my case, salt and potassium due to adrenal fatigue. When something doesn’t feel right in your body, there is usually a reason. Sometimes it’s necessary to do some detective work to find the cause and give your body what it needs to function at its best capacity.

adrenal fatigue, fatigue, body balance

Out of Breath: Am I Having Anxiety or a Heart Attack?

Sometimes, it can be a struggle to get a proper diagnosis when something is not right in your body, Today, I’d like to tell you the story about when I was having breathing problems as a teenager. I was misdiagnosed as having anxiety but in reality, I was actually having a much more serious issue. The following is the story of how I was finally diagnosed with a thyroid disorder.

Growing Pains? But I’m not Growing Anymore!

My symptoms started when I was around 14 years old. I was living in Holland at the time and sitting my Dutch class when, out and out of the blue, I got shooting pains in my upper arms and across my chest. These pains were so intense that I got out of my chair in the middle of class. I went to the doctor where they did a lot of tests. They checked my muscles, joints, and blood and nothing showed up so they told me it was probably just growing pains. This didn’t really make sense to me at the time and at my age, but I just listened to the doctor and went on my way.

I’m Calm, Really

Over the next couple of years, my symptoms started to change and still seemed very strange to me. By the time I was 16, I started to constantly experience shortness of breath. I felt like I couldn’t take a deep breath in. Once again, I went to the doctor and they started checking my oxygen levels. My oxygen levels were fine, so they decided it must be all in my head, like I was having anxiety. By the time I was almost 18, the doctor sent me to breathing therapy because he thought I was having panic attacks.

I didn’t feel like I was having panic attacks. To me, it was something that just happened and would subside just as suddenly as it came. I just felt like I couldn’t breathe properly. Around this time, I would also have strange dreams in which I was choking or like I was drowning underwater. After what was probably just a few minutes, I would wake up and take a deep breath. My body just felt like it was under so much stress, but when I would explain this to the doctor, it would be dismissed as anxiety.

breathe, anxiety, thyroid, Hashimoto's, Graves' disease, breathing problems

Breathe in….Breathe out….

The doctor sent me to therapy to learn breathing exercises to help me cope with this so-called anxiety.  I learned to ground myself and to take very controlled breaths in through my nose and out through my mouth and how to do these breathing exercises when I’m  in situations when I feel stressed or need to calm down. Funny enough, this helped me about 15 years later when I was pregnant and found myself in a scary situation, but did nothing to help my current health difficulties as these were not, in fact, panic attacks.  

By the time I was around 19, I was going from hospital to hospital and having test after test, but no one could figure out what was wrong with me. Each test would come back negative, and that was just about the worst thing someone could tell me. According to them, I was  the picture of perfect health.  That really upset me because I knew something was wrong. I know it sounds crazy because to most people, a negative test result would be a good thing, but I knew something was wrong with me so it actually made me quite upset.

A Lead in the Right Direction

When I was 19, they did another comprehensive blood test to really try and figure out what was wrong with me. As a result, my doctor discovered that I had something wrong with my thyroid and referred me to the hospital to have an ultrasound to try and figure out what’s really happening. I called the hospital to make an appointment for the test and to see a specialist, but I was told the first appointment wouldn’t be for four months. The lady who was scheduling asked me if it was an emergency, and my doctor didn’t say it was, so I said no, as my doctor didn’t say it was, and waited the four months until it was time for my appointment.

At this time, I was 19, living independently from my family in another city, and working part-time in a butcher shop. When I was at work one day, people started looking at me really strangely and asking me what was wrong with my neck. I looked in the mirror and it looked like I swallowed an inflatable, donut-shaped life preserver! It looked like a cartoon! My neck was swollen really badly, but even though it looked and felt strange, it didn’t hurt at all. My hands started shaking, but at only 19, I still didn’t know that anything was really wrong.

I went to the doctor, but figured I would probably be okay since I’m already on the waiting list to go to the hospital. It didn’t occur to me at the time that I should call the doctor and tell them what my symptoms are. My neck was huge, but at that point, I didn’t even know where my thyroid is or what symptoms to watch out for. Back then, the Internet wasn’t really available like it is now. I did do some research in the library, but still didn’t think it was a big deal, and by this point, my hospital appointment was only three weeks away, so I thought I could wait. By this point, my hands were trembling so badly that it became a game to see if when I ate something like soup, anything would be left on the spoon by the time it reached my mouth.

As Serious as a Heart Attack

The day came that I had my appointment and I was sitting in the waiting room with one of my friends. The doctors kept coming in calling the names of each patient as it was his/her turn to come back. Finally, I was called by a doctor that was old and cranky to say the least. He called out my name and I got up. He has never seen me before and knows nothing about me. He just knows I’ve been referred and he needs to have a look at me. The doctor looked at me and said that he hoped I had been sent there urgently. I’m like, “What?!” He asked how long I had been on the waiting list. I told him I had been waiting four months. He was shocked and said that I need to be seen by cardiology urgently. Once again, I was shocked! I asked, “What? Where are we going?” He said that he needed to make sure my heart would last the day. “WHAT!?!?”

heart, breathing problems, thyroid, hashimoto's, Grave's, hypothyroid, hyperthyroid

There I am, walking with this doctor, and we’re going past all these elderly people waiting in line. There was a lady who was probably 80 years old sitting with an IV running, and yet I was the urgent one! First, I went to cardiology, where they stuck all these things all over my body to test my heart to make sure I was fine. I’m like, Oh My Gosh! Again, I’m 19, so my friend, who was maybe 21 at the time, and I were laughing and giggling throughout. We would laugh and make jokes to ease the tension, but all the movement was impacting the test, so soon enough, the technician peered through the curtain and told us to stop so he could get an accurate reading of my heart rate. We calmed down so he could check my heart rate. It was not very good, but it was good enough to allow me to go to my consultation.

By this point, I was freaked out. I just wanted to know what was happening to me. I had the consultation, during which he ran bloodwork and tests to make sure I was okay because he was scared that I was going to have a heart attack. Again, I was 19 and had been having these symptoms for three years. I told him about my shortness of breath, that I had to go to breathing therapy, and because of it, I can calm myself down when I get tense, but I still couldn’t breathe normally.

The doctor said that the reason I couldn’t breathe was because my heart was in such distress that I couldn’t get enough oxygen. I just freaked out! I could not believe what he was telling me. Long story short, I had to go into the hospital every four days for a whole bunch of different tests and it turns out that I had Grave’s Disease, which I later found out is an autoimmune disease of the thyroid.

A “Grave” Answer

At the time, I was told I had this condition, Graves Disease, but the doctor really didn’t tell me much about it. He said it should go away on its own in about a year and a half, so we just needed to focus on getting through the next year and a half. Knowing what I know now, I would have questioned this, but at that point, I was still only 19 and didn’t know much about the thyroid. I was told I just needed to take a some pills for my heart and some for my thyroid and additional pills to counteract the effects of those pills, about 13 pills in all. I also had to go into the hospital for tests every four days for the first six months of my treatment.

Pills, medications, Graves' disease, Hashimoto's, pregnancy, hypothyroidism, hyperthyroidism

I had treatment for about a year and a half. My Graves was under control and I thought I was cured, as this is what the doctor told me. I was taken off all the medicine but warned that in about 20 years, I would have the opposite problem: my thyroid would go too slow instead of too fast like it had worked previously.

The doctor explained that with Graves Disease, your thyroid works too fast. Your thyroid is like the motor of your body. When things like your digestion goes too fast or you feel anxious and jittery, or you have a fast heart rate, you’re hyperthyroid. That’s what had caused all of my weird symptoms. The doctor told me I was cured after taking all the medicines.

My Graves Disease was gone, but in about 20 years, my thyroid will to be too slow, or hypothyroid, but that’s about it. He said I would have to take a pill for it for the rest my life, but that’s about it. That didn’t sound so bad, so I just signed the papers and left the hospital. No more tests, no more pills, no more anything. I was finally free to go enjoy my life. I was cured! Or so I thought….

Pregnant! But Something Wasn’t Right…..

Seven years later, I got pregnant. I had a pregnancy from hell. I didn’t know what was going on. I had bad moods all the time. I was so tired that I couldn’t stay awake for more than 3 or 4 hours per day. It was really extreme. They thought I had postpartum depression 6 months after I gave birth to my daughter. Years later, I found out that I actually have Hashimoto’s Disease, which is an autoimmune disease of the thyroid, but now the thyroid goes too slow. The doctors gave me a pill and said to take this pill every morning when I woke up and I’ll be fine. I had to test my thyroid every year.

The numbers looked okay, but I still wasn’t feeling well. Long story short, when I was researching Hashimoto’s, I figured out it’s not just hypothyroidism, or when your thyroid goes too slow, it’s an autoimmune condition. I also figured out that Graves was an autoimmune disease of the thyroid, which I never knew before. Apparently, I had an autoimmune disease of the thyroid, but it was just in remission. I wasn’t cured at all, and the doctor failed to tell me about it because I’m sure that he knew. Since I was 19, he thought he could just keep it light and simple, and just tell me I was cured. You can read more about my pregnancy here.

Pregnancy, Postpartum Depression, Hashimoto's Disease, Thyroid, Grave's Disease

Always Trust Your Instincts!

They lesson I learned and that I hope to convey to others who are teenagers or young adults is that teenagers can remember. I remember every single thing that this doctor told me. If he would have told me that I had an autoimmune disease of the thyroid, I would have done things differently while I was pregnant. I would have pressed for a test of my thyroid. I would have told them that I had a thyroid issue when I was about 19, but I’m cured. Instead, no one ever tested me. No one looked for anything while I was was pregnant, and I think a lot of my cascading downhill health could have been prevented if I would have been presented with the right information when I was a teenager and having all these problems.

Teenagers know when something is wrong with their body. They’re not just being lazy. They’re not just having panic attacks. They’re not just making it up. If they are really suffering from issues or having symptom for years at a time, it’s real, and you just have to search until you find it. If you have a problem with your health, be your own advocate. Don’t give up. Even when the doctor told me I was having panic attacks, I still didn’t believe it. I complied with the doctors and went to the breathing therapy, but I never ever gave up. It didn’t matter how young I was. It didn’t matter that nobody believed me. I just kept going. I got my diagnosis and in the end, I got my treatment.

How My Hashimoto’s got Misdiagnosed as Postpartum Depression

When I was 19, I was diagnosed with Graves’ disease, which is an autoimmune condition of the thyroid that causes it to work faster than it should, also known as hyperthyroidism. When I received this diagnosis, I was never told that pregnancy effects the thyroid. I had treatments at the time and eventually the doctors told me that I was cured. Well, eventually I became pregnant and remember these treatments when I was reviewing my medical history with my midwife at me first appointment, which was when I was about 13 weeks along.

I’m Dutch, and in Holland, we tend to use midwives during pregnancy. Most midwives are big believers in home and keeping things as natural as possible. I filled in the forms with all the pertinent information about my parent’s health history as well as my own, and included the information about my previous thyroid issue. They took all of this information and added it to my file along with recent blood tests, which were all normal. However, in Holland, the blood tests do not include anything about the thyroid.

I’m Pregnant…..But Exhausted!

In the first trimester of my pregnancy, I was extremely tired, much more than normal. I could only stay awake for about 3 or 4 hours per day and the rest of the time I would be sleeping. When I told my midwife that, she didn’t think this was unusual. She said that first 3 months of the pregnancy are the most important ones, so I should actually be resting as much as I can. Something still didn’t seem right, and I asked her if it’s normal to only be able stay awake for 3 or 4 hours. That seemed kind of excessive to me. Shes was dismissive of my concerns and just said that everybody’s different, so I should just go with it and I’ll feel better.

Then the nausea started. I was about 10 weeks pregnant when the nausea started. I spoke to my doctor and midwife and was told it will be better when I hit 12 weeks, but sometimes it goes on until about 14 weeks. At 14 weeks, I was so nauseas, I couldn’t eat and I was starting to lose weight, which obviously is not something you want to happen while you’re pregnant. This made them start to take it a little more seriously, and when I was 16 weeks pregnant, they gave me medicine to lower the nausea so I could eat something. That’s medicine helped a little, but the nausea didn’t go away. I didn’t just have morning sickness, I was nauseas all the time, and that lasted until I was 26 weeks pregnant.

By then, obviously, you could see on the outside that I was pregnant and while I was happy to be having a baby, I was not feeling happy. I felt like I had this dark cloud above my head all the time. I was constantly in a very bad mood and I was just very unhappy and I didn’t know why. I was less tired than in the first trimester, but I was still really tired. Everything was hurting me. I kept going to the doctor and would tell him that I understood these are pregnancy symptoms, but this just all feels very excessive. I didn’t know any other moms-to-be that were like this. I wasn’t really depressed, but more like in a bad mood and unhappy about everything. I felt like I wanted to fight about everything and I just didn’t want to do anything but just be laying down. When I was laying down, I felt really bored. I was just really unhappy all the time.

Pregnancy, Postpartum Depression, Hashimoto's Disease, Thyroid

Something Doesn’t Feel Right

When I was about 26 weeks pregnant, those negative feelings finally started to fade and I thought that maybe I was finally get to the part where I do feel better. Things were going okay until I was 32 weeks pregnant. I was still working at the time for my job, and we had a dinner with all the coworkers. During dinner, I started getting these sharp pains in my belly, so I started to walk back and forth in the restaurant. All my coworkers were really nervous that I was going to have the baby right then and there. I thought I would walk it off and I’ll be fine. After an hour of walking back and forth in the restaurant, my manager suggested that maybe I should go home. My mom came and picked me up and took me home with her.

The next morning, these sharp pains still weren’t gone. I went back to the midwife and she told me that the baby wants to come out, but I was only 32 weeks long, so it was way too early. Then, she put me on strict bedrest. I was shocked! I was on strict bedrest until 38 weeks. So for the 6 weeks that followed, I was kind of like an incubator. That’s how I felt. During this time, my mood worsened. I was more and more unhappy and I just wanted to have this alien baby out of me because I was done with this.

I must say that this midwife gave very good mental counseling and support, and she’d come to my house and tell me things to calm me down, like that I may feel this way now, but if my baby’s going to be born now, it’ll be premature and and I’ll have all these worries. She said that even though it’s very hard being stuck in bed, that I should understand that I’m doing this for my child and will be fine. She reminded me that this was just temporary and when my child get born at a normal stage, I’ll feel better about it. I listened to her.

The doctor never did any more tests. They never checked anything extra. They just told me it was all pregnancy symptoms. And then the day came that I went into labor. I was excited and eager to go to the hospital, but that’s not how it works in Holland. The midwife comes to your house and she checks how far along you are and she makes a call if you can go to the hospital or not. She told me, nope. I was too far along already and it’s going really fast. I could not go to the hospital and would be having my baby at home. I’m like, WHAT??? I don’t want to have my baby at home!!! I knew I really couldn’t do anything about it though, so I went along with it. I’m like okay, let’s do this. But the baby did not want to come out.

Welcome Baby!

After about an hour of trying to push her out, nothing was happening, and the ambulance was called. I lived in Amsterdam in an apartment on the 4th floor, and if you know houses in Amsterdam a little bit, the stairs are really steep. I had practiced because I knew if I needed to get down these stairs while I’m in labor, I’m practicing these freaking stairs! It was the middle of the night in January 15th when the ambulance arrived, and it was snowing in Holland at the time. The ambulance was there and they told me whenever I didn’t have a contraction, I should go down the steps and into the ambulance. And I was like, now! I can do it now! I ran down the stairs and I reached it in time for the next contraction. Apparently, I went out just in my bare feet just wearing a T-shirt. The paramedics told me to stop pushing. I didn’t even think that was possible!

Pregnancy, depression, fatigue, exhaustion

During the whole ambulance ride, I’m in the ambulance with 3 men. Men! Three men telling a woman in labor to stop pushing. That is not happening! It’s like, impossible! Anyway, a long story short, we made it to the hospital. I ended up having a cesarean because, despite trying to get her out for an hour, she did not want to come out. My oxygen was starting to get low. My contractions were basically stopping. I felt much better now, which the paramedics said was apparently a bad sign. They rushed me into the operating room and I had a C-section and my daughter was born.

I was really happy to see her, obviously, after she was born, but my recovery was extremely slow. They kept telling me that if I can get up and go to the bathroom by myself, I could go home. After 4 days, that was still close to impossible. I couldn’t move my body. My body was so exhausted that I just couldn’t move it.

At this time, I didn’t know that I have a whole bunch of autoimmune diseases and I just thought, why am I so tired? Why is my body not moving right? With the help of my then husband and my mom, we managed to get me to the bathroom and get me released from the hospital to go home, but as I told you, I was living on the 4th floor with stairs that are this steep, and now I had to get up these stairs. My mom and my then husband literally took my feet and placed them on the next step and I’d pull myself up. We’d repeat this process until I made it up the stairs. They couldn’t carry me because I had just had a cesarean and everything was hurting. Then I was in my apartment in bed where I was just was for 6 weeks before my daughter was born. She was born at 38 weeks and 2 days and then I was in bed for almost another month. I just could not get out of bed.

Something’s Still Not Right……

Once I was home, the midwife came by and said that I should just do it. She insisted more and more that I should push myself to just get out of bed. She said that my recovery was going too slowly. Once again, I had no tests to try and find out what was wrong with me, just all the regular tests they do after you have a baby and they did with my daughter as well. No one was really concerned about why my recovery was so slow and why my mood was so bad.

In the days that followed, psychologists came to my house to check on me. They would sit next to my bed with the midwife and people from all sorts of agencies. There were so many people coming by because they were checking for postpartum depression, but I was cleared and told I was fine. After about 2 weeks they left me alone. I slowly recovered. My bad mood was less, and I lost all the weight that I gained, which was not a lot since I didn’t gain a lot of weight because I couldn’t really eat. But I lost all of the weight from the pregnancy within 10 days after the cesarean.

Hallucinations, fatigue, nausea, Hashimoto's

Then, I started to have a very poor appetite. I was really tired again, but this was more extreme. I knew new moms are really tired because they wake up during the night to feed the baby and everything, but I was deadly exhausted. I couldn’t move. I couldn’t think. I couldn’t eat. I couldn’t even walk. I started gaining a lot of weight, but I didn’t really eat much. It all seemed very weird to me and I started getting depressed.

I started getting hallucinations. I’d imagine I was standing on top of the stairwell with my daughter and in my mind I saw us tumbling down the stairs. I knew this was not happening. Later, when I felt better and I was able to drive again, I would drive to work. While I was driving and focusing on the road, my mind would show me images of crashes happening and me tumbling over with the car. It was just surreal. It was the weirdest thing! Then, I would look in the mirror and I would not see myself. I saw another person. When I saw pictures of myself with friends and family from before I had the baby, I saw a different person. Only the pictures that were taken when I was feeling like this looked like me. I went to the doctor and described these hallucinations. I said I didn’t know what was going on, but this was all very strange and doesn’t feel like this should be happening to me.

The doctor told me to go to the psychologist. I went there and I felt like she really didn’t take me seriously, so I didn’t want to go to her anymore. I wanted to go to another one. My doctor didn’t agree and was really upset with me. One day, I bumped into him in the bakery and it was just very awkward and I was just very unhappy about it.

Taking Back Control

About 7 years ago, I started doing my own research. I was looking into depression and depression clinics. I found a depression clinic in west Amsterdam that looked like it would be a good fit for me, so went back to the doctor and asked him for a referral so I can try to go there. He came back and reluctantly agreed give me a referral letter. I went there, and that was the best thing that I’ve ever done.

counseling, support, Hashimoto's

My psychologist was just a girl my age that I could speak to on my level. She believed everything I told her. She was even doing research for me based on all my symptoms. She said that she doubted it’s postpartum depression because was about six months after the baby was born, which is really late. She said if it was postpartum depression, I would have had it right away after she was born. She thought the fatigue I had told her about could be chronic fatigue syndrome, and advised me to look into that. She worked with me based on her diagnosis and told me talk to my doctor about it, and see what you think. I worked with her for about three years every week. While that did help me, it didn’t solve the problem. We worked on positivity exercises, how to make my world a little bit smaller, mindfulness exercises, and how to come back to myself and my core, but something was still off.

At some point, I think about 6 months into my work with her, they did a test, and it turns out that my thyroid completely stopped working. Zero. It did not do anything anymore. That explained my hallucinations, my depression, my gaining weight while I wasn’t eating, and all of these previously unexplained symptoms. They gave me the thyroid medicine, Synthroid. I started taking it and the first 6 months, I started to feel much better and after a year, I was almost back to my old self. I still didn’t really lose the weight, which was kind of weird and my moods were still on and off. I was still exhausted and in a lot of pain, but it was much better than it was before.

Years later, I was actually doing research for the Unchargeables Chronic Illness Community to look more into thyroid issues. Back then, the community was more for people with fibromyalgia because I had fibromyalgia and so that’s what I could support people in. Then I realized, well, I have this thyroid thing as well. I take this pill every morning, but there must be other people with thyroid problems like me. I thought maybe I could support them too by sharing my story and just offering them some support.

It’s a Miracle!

I was doing research about thyroid issues, and I stumbled upon this thing called Hasimoto’s Disease and miracle babies. I was surprised and decided to look more into this. There were these stories of women who were pregnant and had all the same symptoms I had that didn’t experience all the stabbing pains in their stomach, but their babies didn’t make it. Only about 10% of these babies survived and actually were born into the world and those were called miracle babies. I’m like, oh my god! I think my baby’s a miracle baby!

By this time, she was already three or four years old. I started looking at all the symptoms and the treatments and everything. I read about a whole bunch of people who were taking the Synthroid medication, but this was just not enough for them and this was not making them feel any better. There were a lot of people that reported that natural thyroid medication made them feel so much better.

I started looking into that and researching more. I read medical books about the thyroid and about Hashimoto’s and understanding everything better and then I discovered this: Thyrovanz. This saved my life! When I switched from Synthroid to Thyrovanz, I got my life back. I wasn’t so tired anymore. I didn’t have bad moods and mood swings all the time, The fatigue and pain and just not happy about life improved. I could move. I could walk. I felt so much better! Today, my daughter is now a happy 7 ½ year old and we are super-happy together.

The lesson I got from this is even though your doctors may know a lot and they studied for a very long time to become a doctor, do your own research. Be your own advocate and make sure that your medical treatment is correct for you because every body needs something different. Do your own research and try to work with your doctor.

How I feel when I have a Fibromyalgia Flare Up

Stuck in hotel room while flaring

Having lived with Fibromyalgia ever since I was 14 has given me a lot of experience dealing with flares. The most recent one has been going on for months now. When I was in the beginning of this flare I recorded the video.

Little bit of back story: I’ve been traveling in the US for two weeks and got a major flare on the day before I was supposed to go back home. It was so bad that I had to stay in the hotel until I felt better. This video has been recorded after being stuck in the hotel room for over a week with my major flare.

I want to explain to you what a fibro flare is and what it feels like. At the moment of recording the video I had been in a flare for over a week. I will explain my symptoms in detail, but first I want to explain to you what a flare is.

Whichever chronic illness you have, it can be Fibromyalgia, Hashimoto’s, Arthritis, Lupus, Msm, or any other chronic illness. A flare means that all of your symptoms are increased , they are more extreme then they normally are. All of your symptoms act up at the same time and make you feel very bad. That is what we refer to that as a flare.

I want to explain to you what I feel when I have a fibro flare, a fibromyalgia flare up of my symptoms. Now I have to be honest, I have no idea if this current flare is due to my fibromyalgia due to my Hashimoto’s, due to all of my other autoimmune diseases or due to some sort of unknown cause. It can also be changes in the weather or that I’ve just done too much. I know for a fact that I’ve done too much lately. But even though I stopped to rest, my flare seems to be getting worse and I don’t know why.

What do I experience when I have a flare?

Right now my hip is really inflamed, it’s hurting and it’s been like that for a week. The pain is kinda traveling from my hip into my lower back and up into the back of my shoulder blades. It feels like my hip is on fire and then there’s also a nerve stuck. The stuck nerve just feels like a stabbing pain.

I’m extremely tired, which could be because of the pain, it could be the flare, it could be the fact that I’m in a hotel room and not in my house. But at home I am this tired as well when I get a flare. It’s not very visible right now, because at the moment of recording it’s afternoon and I’m doing okay. But when I wake up my eyes are super puffy and swollen and I have blue bags under my eyes.

Right now I am also experiencing a ringing in my ears, I’ve had it for four days. It’s super annoying, I have no clue what I can do about it so I just ignore it. But I know it’s not normal to have a non stop ringing in my ears.

I don’t have a throat ache or throat infection but my throat feels raw, annoying, warm and swollen. I think my lymph nodes are swollen. My lymph nodes usually swell up when I’m in a flare.

The other things that I experience, yes there’s more the list goes on, is a tension head ache. But it’s not really a head ache because my head doesn’t really hurt, it’s like a pressure in my head. It could be due to the weather, because where I am right now it’s raining and it’s very humid and cold. That really affects me, My eyes get more puffy and my fingers will swell up as well.

This irritation in my head is like a pressure which feels like there’s a head ache coming, but I’ve had this for four days now as well. I don’t really know what to do about that.

So basically those are my symptoms when I am in a flare. I could have constipation, diarrhea, anything going wrong my my GI track. It varies from time to time. So now my hip is really inflamed, which actually doesn’t happen often. For me it’s usually either in between my shoulder blades or in my neck on the right side. Now it’s my left hip. It could be nausea, I’m not nauseous right now, most of the times I am nauseous.

My common flare symptoms:

  • Fatigue
  • Nausea
  • Ringing in ears
  • Constipation/Diarrhea
  • Stabbing pain
  • Burning pain
  • Head ache / pressure in head
  • Brain Fog / not being able to concentrate
  • Swelling around eyes and in fingers.

What do I do when I’m in a flare?

I kinda just lay down and try to work through it. Like when you have the flu and you have to just wait until you feel better. That’s the way it works with me when I’m in a flare. But a flare can take days, weeks and sometimes even months. I don’t want to stay in bed for months, so what I’ll do is just rest a lot, but also try to get up and move around a couple times per day.

I make sure that I take all of my supplements, especially magnesium when I’m in a flare when my neck hurts or my hip is inflamed. The magnesium helps lower the inflammation. I use essential oils and Homeopathic anti inflammatory medication as well. Against the head ache I take white willow drops.

That’s basically what it feels like when I’m in a flare and what I do about it. I can’t really do a lot about it but just wait for it to pass, because it always passes. I try to help my body as much as I can. When I’m in a flare I don’t have an appetite, so for me it’s very hard to keep eating. But I make sure that I eat twice, three times per day. Because I notice that when I don’t eat, I feel worse.

Try to stay positive!

The last one is trying to stay positive. That is the hardest one to do though, it’s so hard to stay positive when you feel so bad. For me at the moment of recording it’s been a week, I’m stuck abroad, I’m not at home, I’m in a hotel. I’ve been traveling, I overdid it and my body told me, yeah that’s it! A day before I was supposed to go home.

It’s hard to stay positive by myself in a hotel room, but I try. I focus on the good things, that I really enjoyed the trip and my body just needs rest to recover and hopefully I can go home soon.

UPDATE: After three and a half weeks in the hotel room I could fly back to Europe. Where I stayed another three and a half weeks with my mom. Two momnths after leaving my house, I finally returned home. Where I continue to recover.

Whichever flare you are in of have been in, just try to relax your body, support it with natural supplements and essential oils. Make sure you keep eating and stay positive. Those are my tips!

What does your flare feel like? What do you do to get through it?

Spoonie Story: Jenny

spoonie story jenny

Hi, I am Jenny. I am super private about my goes.

spoonie story jenny
I am 44, mom to three and wife going on nineteen years. In my younger years I played sports, track.Was very very active. I had traumatic accidents when I was younger (hits to the head)and didn’t receive the right medical care…but didn’t affect me till..Later in life starting when I had my first child at 21 did I start to have micro-siezures.(don’t like technical words about my diagnosis). When walking I would have a micro seizure it would break the electrical connection and I would fall,trip. Especially when walking off a curb or stairs or ladders. You can see it in my speech if you know me well enough.
One day I dropped my new baby. I was in front of the bed and it wasn’t far and he landed on the bed.. I started strapping him in the car seat to carry him around the house .. I dropped the carrier a few times with him in it too..I cried so much, felt super helpless.
I saw my first neurologist at 21. Thru all the testing what I came out with was; the trauma points on my head as a young child that didn’t get treated formed scar tissue inside my head on the other side of the outer-injury causing breaks in electrical connections. So they couldn’t really do anything for me other than meds and come in periodically for MRI or dumbo eeg testing.(over 2o years I have had a love-hate mostly hate relationship with my neurologist).
Fast forward to 2007. On Dec31st at 9 week pregnant I developed a blood clot in my lung. After that months of anti-coagulant injections into my stomach to keep clots away and my blood flowing smoothly and trips to my perinatologist for ultrasounds every few weeks, my daughter was born. My health started deteriorating from that moment on. I battled almost fatal infections.. my spoonie health exploded in 2010 when I finished Portland Marathon 26.2 miles(I was a runner since I was little and it got really challenging after seizures hit the mix) after that marathon I developed chronic IT-Band contracture which I still have to this day.. I have never ran again.
Went to multiple rehab ortho PT therapists.. I guess I have a bad case they have never seen before(as Spoonies,not new hearing that)again I was devastated. Following later that spring and years following my health just spiraled..I developed hashimoto.fibromyalgia-chronic fatigue…chemical sensitivities. Environmental illness. I have about 80 cysts under my skin on both legs.. You can’t see them from the outside but you can run your fingers along my skin and can feel some of them. They are down both thighs and inside my thighs too.. Ultrasound is super painful whenever they do it. I develop injuries that I didn’t do anything to get them. Torn labrum, frozen shoulder .. Last set of MRI and MRA diagnosed those. I am not able to walk well some days I have to hang on to the walls in my house. Real bad days I just don’t get out of bed because my muscles don’t work or they are to tight. I am screaming and crying in my head but all my friends and family see is a face that tries to smile but looks in pain 24-7.
I am currently trying rehab again for my legs. My chemical compound reactions is thru the roof. I have to plan trips to the store or other places carefully. When I get dosed by chemical compounds whether it be body products that people wear or cleaning supplies or whatever toxic is in the air that day.. It affects me. It induces heart arythmia.. Brain swelling.. Grand mal seizures…numbness to face. Limb loss of function to name a few.
So those of you who wear perfume daily and go out in public… Friendly reminder to bring it down a notch. Atleast give someone a 5 foot radius to not be harmed. I don’t know how many times my look of deer in the headlights face comes in to play when I can smell someone 15 feet away from me at the grocery store and I have to duck and dive to stay out of the trail of perfume. It is frustrating that one trip to store can mean lockdown to my bed for 1 week while I recover. So dealing with this chemical thing for 7 years.. I am like a ninja in the Honing my spoonie survival skills.
I have found solace in my home studio where I am a Metalsmith. I love creating jewelry out of silver and copper. No matter what my body is doing.. If I am able I can drag myself to my chair and create something pretty in my world of sickness.
Meds.. I am not on any meds period.. My body reacts to them violently because of the chemical reaction thing. I feel everything in full colorful pain that it is. I wish I could take some of the meds my docs prescribe..but alas here I am, unable to even take a Xanax..
Oh well.. Each day, right. My saying is “perhaps tomorrow” <3. I have more body issues and “medical” diagnosis .. But my thumb hurts. 🙂
Carry-on fellow Spoonies..we can use our last spoon today to dig into something sweet later today <3

What’s Wrong With Me?

spoonie story natalie
My name is Natalie, I am the founder of The Unchargeables. In this article I will tell you my story.
Growing up I experienced stinging pains in my arms and legs. The doctors called it growing pains. Everybody ignored it, it will eventually go away…
When I was 14 years old I sat in class. I got shooting pains in my arms so bad that I fell off my chair. Test were done, nothing was found.
I'm Fine Blue dolman sleeve
I have had thyroid issues ever since I was 16 years old. I had a lot of symptoms like shortness of breath, feeling rushed/nervous, was always hot and more vague symptoms. My doctors thought I had anxiety attacks and send me to breathing classes.
I took breathing classes for two years but the symptoms stayed…
When I was 19 a doctor finally took an extensive blood test and saw my thyroid was overactive. He told me to make an appointment at the hospital. There was a 4 month waiting list.
The day of my first appointment came. I was sitting in the waiting room when the specialist called me. He shook my hand and said: ” I hope you were referred here as an emergency, I can see in your face you are very ill”. I told him, no I was on the waiting list for 4 months and have been experiencing symptoms for years. He immediately took me to the cardiac ward (passing very old people that were waiting their turn) and hooked me up to a machine. SHOCK!
Long story short, my heart could still handle it and I was diagnosed with Graves disease. I got a lot of medication for 1,5 years and after that was cured. Or so I thought…
The doctor told me that I could get the opposite of Graves disease one day and I would have to take a pill everyday for the rest of my life. But I was still young and that was not going to happen for a long time.
He was wrong…

My pregnancy 

I was 27 when I became pregnant with my baby girl. During my pregnancy I felt extremely fatigued, very moody, could not hold food down, was extremely nauseous until week 27 and started having sharp pains in my belly from week 33. I was ordered to stay in bed until the baby was born.
The birth ended up in me having an emergency c-section, the baby was stuck and my contractions stopped. We were slowly dying… These are the times that I am thankful for modern medicine because they saved me and my daughter that day. Even though they still did not diagnose me with anything yet.
Healing from the operation took very long, my health kept getting worse. 5 months after my girl was born I had post partum depression. My depression got worse and worse.
It took me months to find the right help. I went to the depression clinic for 2 years 2 hours a week. And through counselling I realised, maybe it is my thyroid again. It turns out I was right.
spoonie story natalie
Thyroid specialist number 2 prescribed synthetic T4 thyroid hormones and I started feeling a little better. But I didn’t fully recover. I still hurt, do not feel hunger, have sleepless nights or nights/days where I sleep 20 hours, I am cold all the time, am ill all the time. This is not how life is supposed to be right?

What is up with me?

Aside from my thyroid issues I suffer from Fibromyalgia. The Fibromyalgia used to make my joints and muscles hurt and inflame to a point that it gives me a fever. Now that I know my limits better and am sugar free the inflammations are much less extreme. It also makes me super sensitive to sounds. The smallest sound can aggravate me and start a flare. I have regular migraine’s that make me bed bound for days. Then there are the days that I simply feel like my battery is completely empty and I can not get up. What is wrong with me?
Doctors keep telling me that my blood work looks fine. I am 99% sure that I have Hashimoto’s disease, but did not get it diagnosed yet.  (Update: After writing this article Hashimoto’s has been officially diagnosed)
A while ago I moved countries, that does not make it any easier to get a diagnosis since I have to get into the system first. The better climate does help me tremendously with my symptoms. I feel more energetic (meaning I need less naps) I sleep better and have less pain. I can be a better mother for my daughter.
Every day I try to work on my health. I eat sugar free and gluten free, do not drink coffee or alcohol and try to not overdo it. And most of all try to stay positive!
I just want to thank everybody who participates in the The Unchargeables community. It makes me proud to be amongst all of you.

What doctors have said to me

In this video I tell you what doctors have said to me and how I react to it. Subscribe to the channel for more video’s like these!


Spoonie Story: Brianna

spoonie story brianna

Hi! I’m a longtime Spoonie. I was born with Common variable immunodeficiency CVID–which means that I don’t have a functioning immune system. It’s so rare that our ribbon is zebra! I’ve been giving myself IGG infusions twice weekly for years.

spoonie story brianna

Related to CVID, I also struggle with Hashimoto’s, asthma, chronic migraines, and ulcerative colitis which is an inflammatory bowel disease (IBD). I have severe anxiety and PTSD. Sixteen surgeries, twelve pneumonias, and countless infections later…I’m still here. Plus, I worked through kidney cancer this year.

But at 36, I fight every day with my teeth clenched and my hackles up. I want to show my sweet daughters that they can choose to be strong, no matter what. And my husband is my biggest encourager–he never lets me forget that I have survived so much, I can certainly make it thru today. I wish that for all of my fellow Spoonies. Isn’t it important to know that we’re not alone?

The Root Cause Of Hashimoto’s

root cause hashimoto

What’s Really Going on in Hashimoto’s? Hashimoto’s is more than just hypothyroidism. Most patients with Hashimoto’s will present with acid reflux, nutrient deficiencies, anemia, intestinal permeability, food sensitivities, gum disorders and hypoglycemia in addition to the “typical” hypothyroid symptoms such as weight gain, cold intolerance, hair loss, fatigue and constipation. The body becomes stuck in a vicious cycle of immune system overload, adrenal insufficiency, gut dysbiosis, impaired digestion, inflammation, and thyroid hormone release abnormalities. This cycle is self-sustaining and will continue causing more and more symptoms until an external factor intervenes and breaks the cycle apart. The lifestyle interventions discussed in this book aim to dismantle the vicious cycle piece by piece. We start with the simplest modifications, by removing triggers, and follow with repairing the other broken systems to restore equilibrium, allowing the body to rebuild itself.