A Journey to Diagnosis – Preface
Justin and I had been married for 10 years. We planned to start a family, but nothing was happening. After speaking to my gynecologist, we decided to try Intrauterine Insemination (IUI). A “fertility treatment that involves placing sperm inside the uterus to facilitate fertilization.”
I started taking medications to help stimulate ovulation, regular ultrasounds took place to determine when my eggs were mature. Once they reached a specific diameter, we would schedule the IUI procedure. _I’d like to point out was that we never tested for a surge in LH hormone, I was on Clomid, but was never given any injectables… not sure if that would have made a difference or not_
After 5 failed IUI cycles we decided it was time to take a break. We were going to need to see a fertility specialist, but after discussing it we decided to wait, do some research, and revisit our options at a future date.
A few years before the IUI treatments, I started to gain weight and struggled to keep it off. I was experiencing fatigue, cold sensitivity, puffy eyes, hair loss, dry skin, as well as many other symptoms. I just didn’t feel fantastic most of the time. My Mom, Aunts, and a few cousins suggested that I might have thyroid issues and that I should get checked out.
At my request my gynecologist tested me for thyroid issues, but she stated that while my levels (I’m not sure which ones) were a little high, it was nothing to be concerned about. I would be tested by a total of 4 more doctors (3 gynecologists and 1 primary care physician) over the net 5 years, all with a similar message. The PCP was a little different, but we will get to him in a little bit.
I continued to battle my symptoms, gained more weight (which is always depressing) despite changes to my diet and exercise habits. Nothing seemed to ever make a difference. I conceded to the idea that this was normal for me and my body… and I moved on.
Justin and I decided we were ready to start talking to a fertility doctor. We are prepared to start our family. We had done a ton of research, and after a few initial Skype calls, we decided on a doctor in Las Vegas, Nevada. We scheduled our first appointment and got orders to begin all of our initial testings.
In April, I did blood tests for a full female panel, a physical exam, and vaginal cultures. This is where we hit a temporary roadblock.
First, my blood pressure was high, so I had to work on that… (I had a cup of coffee just before my appointment that added to my high BP, but it still is a wee bit high on occasions).
Second, my TSH level was really high, over 5. Trying to get pregnant, I needed my level to be under between 0.1-2.5. They thought perhaps it was an off day and asked me to get retested by a local doctor. This was when I went to the primary care physician, who upon receiving my results, he called to tell me that nothing abnormal. He did not know how he would even treat me since everything looked fine.
I asked him to please forward the results to my fertility doctor. Once they received them, they called me to tell me that my TSH level was still well above 5.
I needed to see an endocrinologist. They referred me to the American Thyroid Association to locate a provider near me.
I had hopes that this was the problem. That this was the reason that I have had miscarriages and the reason I haven’t been able to get pregnant, but I was about to find out that there are other underlying issues… and I still have quite a bit more fertility testing to go.
Visit to my endocrinologist.
Once I sent the referral and my previous test results from this year to my endocrinologist, we went in for a visit. We answered a lot of questions regarding my symptoms and how I am feeling. I got an ultrasound done on my thyroid gland and got an initial diagnosis. I have Hashimoto’s thyroiditis, an autoimmune disorder involving chronic inflammation of the thyroid. Due to this, I have developed hypothyroidism and require treatment of thyroid hormone replacement. I was placed on levothyroxine, and more tests were ordered.
One month later, I went in for blood tests and got my results back. My TSH level was 1.25, right in the range it needed to be, but my results showed a few other issues.
One, I also have iron deficiency anemia. Normal levels for adult women are 34.9 and 44.5 (my doc said sleep doctors like to see at least 50), but my level was a 5. The second-lowest he has seen (the lowest was 2). So I was put on an iron supplement.
Two, I am B-12 deficient. Naturally, that meant a B-12 supplement as well.
Three I also tested positive for Celiacs, so I will need to see a gastroenterologist in the near future, but for now I am just starting to eliminate gluten from my diet.
It was amazing how I had all the symptoms for all of these issues, had told doctor after doctor, but was never checked and never diagnosed.
Another one of my symptoms that had become progressively worse and even more worrisome was my breathing. I was experiencing shortness of breath, and just a general difficulty breathing when doing any sort of activity. My endocrinologist also noticed that I had developed stridor on our second visit (so in a month).
He advised that I make an appointment to see someone, which luckily I had already done. It seemed like there was just one thing after another happening to me. I felt like I was falling apart, and quicker than I should be.
It was two days later that I saw a doctor for my breathing troubles. I was given a spirometry test, and it concerned my doctor showing signs of a blockage. After a nebulizer treatment, I showed a little improvement. We made a collective decision for me to try Symbicort twice daily and albuterol as a rescue inhaler (or before exercise). I would return in a month, and we would determine if I needed to have a chest x-ray or CT Scan.
One month is a long time when there is the possibility of tumors, and Google is the worst! Everything you Google leads you down a path of worst-case scenarios… all ending in death.
It wasn’t very relieving when we returned and I had improved, but not significantly. So CT Scan it will be…
Needing to get a CT Scan wasn’t the only downer news I received. The same week I also had a follow-up appointment with my endocrinologist. My B-12 levels were normal, but my iron was still low (now 20). But the iron pills were giving me GI issues (acid reflux and constipation). It is looking like I am going to start having to have infusions.
Before I start infusions, it was decided that my breathing issue was the more pressing. The doctor added Vitamin C for more iron absorption and dropped my iron pill to one tablet every other day (with Vitamin C).
My TSH levels were low 0.45, still in the “normal” range, but significantly low. It seems like the steroids (inhalers) might be the cause… so my current dosage wasn’t adjusted yet. If I start to experience any shaking or heart palpitations, excessive sweating, then we will accommodate if needed.
November I will get all my levels checked again. Hopefully by then we will know what is up with my breathing and have that all sorted out. Then we can move forward with whatever we might have to do in regards to my thyroid and iron levels.
Next week is my CT scan, and we are hoping for good news, no blockage, no tumors.
At least we are on the right track. It is quite the adjustment to accept that the reason you feel so crappy, tired, and unhealthy isn’t only because you are overweight and out of shape, especially when you have felt crappy for such a long time. There could be underlying issues causing it all.
It took me quite a few “opinions” before I really started getting answers. My advice, don’t just take what the first doctor tells you to be the end-all. Seek out second and third opinions if necessary and don’t wait years to do so like I did.
This is where we are at now. Still figuring out all the new health issues I have before we can move forward with our remaining fertility tests.
Side Note: We have chosen to be uninsured, self-pay for all our fertility/medical treatments. I will write more on this experience, as we research and price around for our best options. For now we are going to remain on self-pay, but eventually, if my reoccurring medical bills outweigh the cost of medical insurance we may get on a policy… more on all the $$$ later.