Advocate for YOU!
Updated: Mar 23, 2020
If you know me, you know my dad is my best friend. I talked previously about being one of seven kids, but I am his one and only. I attribute most of who I am today because of the example he set for me. He's generous, honest, kind, goofy, and when he cares about something, he does it passionately and with all he's got. I could have written that same description about myself. My dad has taught me to be a fighter and to live with integrity, to do things with purpose, to make lasting relationships with good people, and that making mistakes is OK, as long as I find my path eventually.
It's crazy to think my dad almost didn't make it to be my dad, and that his survival, at the time, meant that I would never exist. My dad calls me his "miracle baby," because at 19-years-old, he was told he would never be able to have children.
This sounds intense... let's get into it.
In June of 1970, my dad was 19-years-old and worked at Disneyland in Anaheim, CA (isn't that cool?). He began getting multiple nose bleeds and ended up at the nurse's tent many times. He saw the family doctor who took a culture and said he would let him know the results in the following weeks. On July 4th, 1970, my dad worked but was still having nose bleeds so he asked his sister to call the family doctor again. He was seen that night, which was a Saturday, at 8PM and was immediately admitted to the hospital with a condition called "mid-line granuloma." He proceeded to spend a week at the hospital in isolation because the doctors were not sure if his condition was contagious or not.
He was soon referred to UCLA where specialists there took a biopsy of his sinuses to get a better idea of what they were dealing with. After a week, they sent him home with instructions to take a steroid daily.
He went back to work and within a couple of days, he began to experience pain in his chest. He was again admitted to UCLA Medical Center and stayed there for 8 weeks, diagnosed with "Wegener's Granuloma."
Wegener's Granuloma is a rare multi-system autoimmune disease. It causes inflammation and blood flow restriction in the blood vessels of your nose, sinuses, throat, lungs and kidneys. It effects 3 out of every 100,000 people in the United States. Experts still are unsure of what causes it. Before treatment for this condition was discovered, 82% of patients died within the first year. Due to medical progress, 90% of patients now will survive.
And now back to the story...
While at UCLA, the condition had engulfed my dad's left lung and then moved on to his kidneys. At the time, my dad was only the seventh, and youngest, patient that UCLA had ever seen with this particular condition. They told my grandparents to prepare for the worst, and at one point, my dad was told he only had a short time left to live.
The doctors started my dad on an experimental drug, in combination with steroids, in the hopes that this would kill off the white blood cells that were causing the issues. He was told that while this drug may save his life, it would make him sterile, so he would not be able to father a child. In the end, the experimental drug combination helped my dad survive the physical ailments caused by Wegener's Granuloma.
Let's fast forward 18 years to 1988. My dad is now 37 years old and dating my mother, who tells him one day that she is pregnant.
Now, going through his life thinking he can't have kids, you can only imagine how shocked my dad was at the time. He went to a local urologist to get tested. The urologist explained that while he didn't have a lot of little guys, the one's he had were very active and YES, his condition had changed over the years and he could father a child now.
In May of 1989, I entered the world and I have had such a special relationship with my dad ever since!
I've mentioned before that I have a very rare condition called exercise-induced anemia. I also have low blood pressure, and there was that whole bleeding thing that happened after I gave birth to my daughter (refer to my blog post before this one if you're wondering what I'm talking about).
Part of me wonders if something genetic was passed down to me from my dad. His condition dealt with his blood, my conditions all deal with my blood. While I don't think I have what he had in any way, maybe my issues stem from what he had, if that makes sense? Unfortunately we don't live in a place where I can get more thorough testing done on this matter, but I will share my story about how I discovered my anemia.
I am very thankful for my education, and while I am absolutely not a doctor or an endocrinologist (and never claim to be), I have been educated on medical testing and how to read the results of those tests. This does not mean I diagnose ANYONE or prescribe things to anyone (except maybe lifestyle changes). I stay in my scope of practice. This does mean that since I can read labs and know what discrepancies look like, I can suggest areas where I feel my clients should look a little deeper into certain issues.
When I went to the doctor last year (good ol' Navy medical), I knew exactly what tests I wanted ran, and thankfully, the doctor I saw was very open to it and ran all of them. This is NOT usually the case with a lot of the medical services here and part of me always wonders "why?" Don't get me wrong, I am so thankful for the benefits that are provided to military families, but at times, I wish they would go the extra mile to not only take care of dependents, but take care of the actual military members. I could make a whole blog post about this alone, but for now I will leave it at that.
Since we live on a little island with very few specialized medical resources, some of those tests had to be sent off island in order to get the results. A couple of weeks later, I was called by a nurse who said all of the blood work looked normal and to come back in if I was experiencing any more issues.
This was already my second time going to the doctor with these same issues. I wasn't satisfied with their answer, so I asked if those lab results could be found online. She confirmed that they could be, so I went home, got on my computer and pulled them up. The first thing that popped out at me were my iron levels, as well as my ferritin. While the numbers were pretty low, they were still considered to be in the "normal" ranges, but the symptoms I was experiencing were textbook anemia symptoms, triggered around exercise, but not so active in my day to day life.
Remember, those "normal" ranges are based on a population average, it does not necessarily mean that they are going to be accurate for YOU as an individual. Does this mean that doctor's are wrong? Absolutely NOT. Their education and patient experience FAR outweighs what mine will ever be, BUT it does mean that if you truly feel something is being overlooked or isn't feeling right for your body, stand up and say something!
Which is what I did after looking at those labs...
I called the doctor's office and asked him to look at my labs one more time, specifically my iron panel, and to consider the symptoms I was experiencing. He agreed that it did sound like there was iron deficiency at play and maybe the blood work would be more conclusive if I got it done again after exercise. When those results came back, my levels had dropped significantly and he concluded that I was dealing with anemia triggered by exercise.
Exercise induced anemia is referred to by experts as "a forgotten cause of iron deficiency anemia in young adults." I will link a PubMed study at the end of this post if you want to learn more about it, who if effects, and who is at risk of developing this.
After the doctor made this conclusion, I started taking an iron supplement about an hour before exercising, and my symptoms improved substantially. I still have rough days and I can't push myself too hard, but I give every workout my best while knowing my limits.
Can you imagine if I hadn't taken a look at my labs myself though? If I had just taken the nurses phone call as conclusive and gone on feeling as crummy as I was? I KNEW something was off and advocated for myself to get further testing done in order to get answers.
I have another story for you.
I have this wonderful client that I've been working with for almost a year and a half now. She's lost a substantial amount of weight, learned how to keep it off, discovered how to listen to her body and destroyed food fears and myths. One day she sends me a message and says that she was diagnosed with PCOS and the doctors wanted to start her on birth control, but she wasn't comfortable going that route. Our conversation went a little something like this...
Me: What was their basis of diagnosing you with PCOS?
Her: They did an ultrasound and found cysts in my ovaries.
Me: OK? I have a history of cysts in my ovaries, but I don't have PCOS. It might be called Polycystic Ovarian Syndrome, but it's not always characterized by cysts as the only symptom... did they do blood work?
Her: No, no blood work was done.
Me: The determining factor of PCOS is elevated male sex hormones. Those need to be tested before they can confirm a diagnosis. It's up to you the route you want to take, I'll support you either way, but I might look into getting those tested.
About a month later, when she was finally able to get in to see her PCM and get that blood work done, her hormone levels were normal. She did NOT have PCOS.
If she hadn't gotten that blood work done and instead, taken the first doctor's diagnosis as fact, she may have gotten on birth control and had a whole mess of other issues (PS, I'm not a big fan of synthetic hormone birth control unless it is absolutely necessary, and if you're interested in learning why I feel that way, I can do another post about that later).
One more story, and then I'll get to the meat and potatoes of this post.
I started with a client in 2017 who has hypothyroidism. She was certain that it was NOT Hashimoto's Thyroiditis (the autoimmune form of the condition). She had been diagnosed with the condition in the mid-2000s and been managing it ever since, struggling with energy levels and weight loss. I gave her a list of tests she should have ran every time she gets her thyroid blood work done, and when the results came back, it turned out that she did, in fact, have Hashimoto's Thyroiditis. It was actually ON her lab work from 2007, but no doctor ever caught it or did anything about it. So, for 10 years, she was dealing with an unmanaged autoimmune condition and had no idea.
So, here's the thing:
Hormone conditions are just now coming to the surface as being real issues. For so long, they really weren't considered. Your body was made to do this, so it's doing it and that's that, but that's not always the case. With all of the medical progress we have made, mind sets need to catch up and recognize that while we are all human, we are all biological individuals.
Does this mean if you gain an excessive amount of weight in what you would consider a short time that you automatically have a thyroid condition? NO. You still need to cut through your own BS and be able to objectively judge your lifestyle and eating habits, but if those are on point and you're still struggling, some blood work might be a good idea.
Let's say you suspect there is an imbalance somewhere internally, and you go to the doctor and explain it to them. They'll probably request some labs, but the typical labs they request don't always tell the BIG picture.
When they "check" your thyroid, they're usually only running TSH, thyroid stimulating hormone. This hormone is produced by the pituitary gland in your brain and sent down to your thyroid to tell it that the body is out of the thyroid hormone, please make more.
The way the lab is read is if your TSH is too high, than your thyroid hormone level is too low, concluding that hypothyroidism is at play.
If your TSH is low, that means there is too much thyroid hormone circulating, so the conclusion is hyperthyroidism.
This test is from the 1970s and just not functional anymore. Your TSH can be low or elevated for a vast number of reasons: what time of the day is it? did you fast before? did you eat a big meal? are you stressed? did you sleep well?
It just doesn't give us the big picture.
I will share with you the list of tests I recommend my clients ask for when they get their thyroid tested before I end this post, and if there is anything you would like further information on, please just ask!
This is considered a FUNCTIONAL THYROID PANEL:
TSH - this should be tested in conjunction with these other tests so that we can get the whole story.
Free T3 - The active form of the thyroid hormone, very potent, and produced in a small amount with T4
Free T4 - The inactive form of the thyroid hormone which converts to T3 when your body has run out of what it produced
Reverse T3 - Used to block and flush out T3 when your body has used all it needs. Important for testing to know the ration between T3:T4:rT3 so proper synthetic hormone medication can be administered.
Total T4 - Knowing the total number of the hormones are important for seeing the increases, decreases, and changes in the proteins that bind T3 and T4.
T3 Uptake - How much of the T3 your thyroid is producing is your body actually using?
Thyroglobulin antibody: This is a test used to measure antibodies, which are found in autoimmune conditions of the thyroid gland, such as Hashimoto's and Graves' disease.
Thyroid peroxidase antibody (TPO) - These antibodies target thyroid peroxidase, which is an enzyme that functions to help produce T4 and T3. This can interfere with their production, resulting in hypothyroidism. High levels of this antibody are associated with Hashimoto's Thyroiditis.
Thyroid-Stimulating Immunoglobulin (TSI) - Another antibodies test that is found in individuals with Graves' disease. This antibody effects tissues in the eyeballs and beneath the skin, contributing to the bulging eyes and skin thickening in the front of the lower legs common with those who have Graves'.
Other Helpful Tests
Iron panel - especially if you are a female
Vitamin D - because a good percentage of individuals are vitamin D deficient.
Hormone panel - Usually if one hormone is thrown off, others might be as well, so it is best to be thorough. If you have been told you have PCOS but no blood work was done, absolutely ask for a hormone panel, including androgens (male sex hormones) to be ran. While females and males each have a small amount of the other's sex hormones, these numbers should stay small. An elevation may be an indicator of something else going on.
The point of this post is, you need to advocate for YOU when it comes to medical testing. I tell my clients that regardless of my education and recommendations, THEY KNOW THEIR BODY BEST, they just might need some insight on how to listen to it better. Don't settle for scratching the surface when it comes to your medical care. Your relief from your ailments won't ever come that way. Push to get the answers that will help you, even if it's frustrating or discouraging at times.
Again... cut through your own BS though and make sure you lifestyle habits, your nutrition and your activity is all at a reasonable level before jumping to any conclusions. If you aren't sure, find an outside professional that can help you figure that out!
And please, please, please, please... don't ask your doctor for nutrition advice. They are extremely knowledgeable in so many areas, but when it comes to nutrition, I have heard doctors suggest so many different things. Registered Dietitians and Nutritionists are specifically trained in nutrition. Go find one and talk to them and save the medical concerns for your doctor. I'm sure they'd appreciate that too!
As always, thanks for reading! If you find that this info could help someone else, please feel free to share!
The article about exercise-induced anemia: