When One Diagnosis Isn’t Enough: Hypothyroidism, Hashimoto’s Testing, and IIH Reconfirmed

One ER visit, two diagnoses, and a long list of follow-ups.

TL;DR with Jump Links

Good afternoon, my friends! Today has already felt long, and it is only half complete. However, I knew it was time to take the hand to the keyboard and blog again.

Today’s featured image was from this morning. I was on the way to Battle Creek for blood work when I happened upon a bald eagle eating an animal. I had to turn around and grab a photo. Unfortunately, it flew off as I was taking it.

Still a beautiful shot, though!

The last time I popped in and blogged, I was really sick. Ultimately, I took myself to the ER because I was so bad.

The ER was a terrible experience. Let’s just say, I am glad the flare broke before the next day.

Especially given my blood work, since they were able to get it before I walked out.

💡Did You Know there is a medical term for when your body physically shivers because it feels cold when you’re not? This term is rigor. It is defined as “an episode of intense, involuntary shivering and chills, often accompanied by a feeling of cold, without necessarily being in a cold environment.”

Let me just assure you right now that rigor is a vicious feeling. I had a lovely experience of dismissal when trying to explain my symptoms through brain fog. The last straw was a nurse who needed customer service training.

🔗Jump to Why My ER Visit Shook My Trust in Medical Care.

Life does come with a little gratitude, though. The day after the ER visit, Idiopathic Intracranial Hypertension (IIH or Pseudo Tumor) was confirmed. My field of vision testing and imaging shows signs, but not in a traditional sense.

It is clearly there, though. So, I received my referral to neuro-ophthalmology at the University of Michigan in Ann Arbor.

🔗Jump to Answers Finally: My IIH Diagnosis and Intermittent Papilledema.

Tuesday of this week, I decided it was time to visit my daughter! I’d missed her a ton, so I took some money set aside for that trip and spent the day with her.

It was an absolute blast. Between AYCE sushi and shopping inside a high-end consignment shop, we really enjoyed our time together. There was also Biggby involved. We went with Strawberry Shortcake cream freezes.

🗨️Let’s Talk empty nest syndrome. My daughter moving to a city alone was crushing. The fact it is two hours away was heartbreaking. I miss her dearly, while also feeling immense pride in her for going out into the world and experiencing it! Do you have adult children? How’d you handle them moving out?

I always dreamed of owning a brand new Coach purse, and now I do! I found one for 1/5th the retail value, with a resale value $300 more than what I paid. Especially considering it came with tags and all parts. It even had the Coach Care card for repairs.

I told my daughter it is her inheritance. I don’t own much of value, but she will have a nice purse someday!

The final point is a doozy, too. I had an appointment with my PCP on Friday. She looked over my TSH numbers from the ER and years of previous blood work. She finds it odd that I was never under 3 when tested with a dive into hypothyroidism.

She suspects Hashimoto’s, an autoimmune disorder.

There is also the lingering belief that hypothyroidism with IIH symptoms added on are making me feel this miserable.

There was a lot covered at this appointment with the possibility of finally nailing down the why to treat the source of my problems.

🔗Jump to Hashimoto’s or Hypothyroidism? What My Doctors Are Looking For.
Click Here for closing remarks.

Why My ER Visit Shook My Trust in Medical Care.

Can we just stop for a moment and appreciate the sheer number of medical providers who listen and empathize with their patients? Those who hear the problem, do the testing, and recognize the person for who they are: a human being.

Unfortunately, they work for better hospitals than the one in my community.

Near the end of a four-day flare spike, I spent my time with rigor. As a matter of fact, I would shiver myself awake multiple times a night despite the room being around 70-75 degrees.

So, of course, it would not make sense when I was told by the ER doctor that it must be because it is summer outside. The controlled room temperature is likely making me feel colder than it really is.

I let it be.

I was too sick to argue or advocate. I was just glad he was doing some blood work to see where my numbers stood. He also wanted a urine sample, but I couldn’t use the restroom yet. He gave me some water and went on his way.

One hour later…

So, when I could finally use the restroom, I wanted to flag down a nurse to let them know. That way, they could call whomever they needed to get that done.

I had been sitting a while, and I was sore. So, I chose to stand and see if I could just grab someone’s attention rather than sit and wait for my nurse’s bat light to signal someone needed help.

Please tell me that I am not the only joker thinking of how fun it would be to have an actual giant lamp on top of hospitals that signals a rogue nurse, fighter of disease, to come save the day?

I got someone rogue, alright. This woman must have been on her last nerve and needed some coffee. When she stopped to see what I needed, I wasn’t greeted with that phrase at first. I was greeted with:

Yes, I see you! What do you need?!

🗨️Let’s Talk medical gaslighting at its finest. How many times have your symptoms been downplayed just to learn later it was a serious matter? While I don’t like to dump on the medical field as a whole, I’d still like to stand in unity against those who give medical care a bad name. ♡

You know, because that is how you talk to patients in an ER who are struggling with some ailment or physical issue. We’re only here to inconvenience you, really.

I tried to apologize for bothering her, but she couldn’t hear me and cut me off to say so.

By the time I went to the ER, I was extremely cognitively slowed and couldn’t form words easily. I stumbled trying to speak before accidentally yelling that I was just wanting to let them know that I was ready to give the urine sample when someone had a moment and I needed to pee.

She responded over her shoulder, yelling at me that someone would be with me.

It only took a whole five seconds to decide I wasn’t going to stay. I went to the bathroom, and on the way back, my last piece of sanity snapped.

Let’s just say there were a lot of cuss words involved, and everything I tried to say with intention wouldn’t come out. My mouth ran autopilot settings. I had to just walk away from them to stop myself. My brain wasn’t cooperating.

Answers Finally: My IIH Diagnosis and Intermittent Papilledema.

The day after my ER visit was my follow-up appointment after having some field of vision testing and imaging completed. The doctor explained that he thinks I have intermittent, mild, or reducing CSF pressure.

He saw something in the imaging and testing that proves IIH, just not in the traditional sense.

🗨️Let’s Talk about the sheer time it takes to get a diagnosis with IIH. I’m well aware my diagnosis process wasn’t nearly as long as some others. How long did it take before you were finally heard?

It seems I needed a little deeper dive. He wants to dig deeper for an official official diagnosis, unlike the unofficial official one I have right now. I was referred to the University of Michigan Neuro-Ophthalmology in Ann Arbor.

It is a relief to have some answers to a lot of questions. The appointment is scheduled for the end of this month.

Hashimoto’s or Hypothyroidism? What My Doctors Are Looking For.

I had an appointment with my PCP on Friday. I told her about my ER visit and the blood work they ran. I pointed out the results on my TSH panel.

She looked over everything and realized that I have never had a result under 3. Good is generally under 3, even if above is still normal. She found that odd.

Suddenly, I have numbers saying I am fighting hypothyroidism, and she wants to know why. I concur.

She suspects Hashimoto’s Thyroiditis. It is an autoimmune disorder where your body tries to fight the thyroid gland like it would a disease. Eventually, your body wins, and your thyroid gland just dies.

It means a lifetime of thyroid hormone replacement therapy.

🗨️Let’s Talk about medical dumping, shall we? Do you ever feel so full of information and medical questions that you’re afraid speaking up will look like dramatics? How do you relieve the pressure behind your valve?

She thinks I have this on top of IIH, which is creating a firestorm of symptoms. To say it is an unpleasant experience would be an understatement.

While writing this, my TSH from today came back, and it is again within the normal range, although it is almost at the four-point mark.

The antibody test is still pending. No answers yet.

We also discussed my neck MRI, which came back normal. It seems my nerve issue is elsewhere. I’m scheduled for an EMG, and answers remain to be seen.

Now Let’s Burrito This Together…

It feels like I am closing in on answers. It really does. I have a good team of medical professionals helping me. People are listening to me finally. I just need to keep waiting until I reach a point where I can get everything treated properly. The lingering brain fog is the worst, and I miss having full brain function every day.

Thank you for coming by and listening to me dump my health drama.

Like sands through an hourglass, these are the days of my life.

Have a great day, and I look forward to your comments!

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