All posts by ihatehardware.

Graves Disease

The verdict is in.  Based on the amount of iodine present in Norah’s thyroid during her scans and her blood test results, Norah has been diagnosed with Graves Disease.  Graves is an autoimmune disorder which causes antibodies to stimulate the thyroid gland to produce more thyroid hormone even though the pituitary gland isn’t calling for it.  The uptake scans showed no nodules, which is good because that would have required in-depth investigation into what was causing them.

Graves Disease is not that common in 4-year-olds and Children’s Hospital most often sees it in teenagers (it’s most common in 30-40YO women), but that may be because it goes undiagnosed for years.  The symptoms are not such that you would immediately think something was physically wrong…hyperactivity, excessive emotion, and overeating could all be personality traits or a phase.  Norah’s blood pressure and heart rate are high, but if she hadn’t developed the goiter (swollen thyroid), the heart issues may not have been traced back to her thyroid.

She’ll begin taking medication (Methimazole) tonight, and will have to take it morning and night.  Her thyroid levels and blood counts will be checked every few weeks to see if the dosage is correct and to watch for a rare side-effect of the medication which is low blood counts which can affect clotting and infection.  Hyperthyroidism can be difficult to regulate, so at some point in the future the doctors may recommend ablating or removing her thyroid and putting her on a daily thyroid supplement.  Unless there are problems with the medication I don’t expect this treatment to be suggested until she’s done growing.

There is a chance that the condition will go into remission within the next year or two, but given her age and the severity her doctor said that the chances are less than 30%.  All of her symptoms should be resolved as soon as we get the meds adjusted correctly, so that’s something to look forward to.

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Testing…1, 2, 3

Norah and I headed to Children’s today at 6:30 a.m., which turned out to be quite early for an 8 o’clock appointment since the traffic wasn’t bad at all.  We were inside the hospital by 7:15, and since Norah couldn’t eat for 2 hours before her test (she got up early and ate breakfast with Ben), we just hung around watching Max & Ruby until it was time for her to drink the iodine cocktail.

It was actually just a tiny oral syringe of iodine, not the kind your mom used to paint your cuts with.  She drank it with no problem, but I was surprised to find out that we had to wait 4 hours before she had the scan, rather than 2 hours.  The technician also told me that she would have to hold still for 15 minutes per scan, and that there were 3 scans.  I obsessed for most of the 4 hours about how I was going to keep Norah still for 45 minutes+.

We went to my office and I got a bit of work done while we waited, although Norah’s hyperactivity makes it hard to get much accomplished.  The high metabolism doesn’t help either because every car ride involves a stop to poop.  Any behavioral progress or boundries that may have existed before have been wiped clean by hyperthyroidism.  My old boss Reyn, now one of our vice presidents, came into the office and she immediately started feeling around in his pockets!

I shouldn’t have worried about how to keep Norah still during the scans because everyone at Children’s is a pro.  Diane and Joanne laid her out on the machine, took the initial scan which was just a few seconds, and then 3 scans at 60-90 seconds each.  Diane had her hands on Norah’s head just to remind her not to move, and Joanne moved the machine to take scans from the front and each side.  The were very impressed with Norah’s ability to stay still and quiet, and so was I.  A dozen stickers later (and a balloon), we left Children’s for the second time today.

Norah is headed back with Ben tomorrow morning for a 24-hour scan.  The scans measure how much iodine is in her thyroid gland, which will help the doctors decide whether Norah has Graves Disease or Thyroiditis.  If it’s Thyroiditis, her thyroid won’t absorb much iodine.  Once the diagnosis is made, they will work on the treatment plan.  We have an appointment next Monday but Dr. Fleisch just emailed me to say we should have some test results by Thursday at the latest.  I hope so.

P.S.  When I told Norah that we were going to the hospital she said, “I want to go see Dr. Fleisch.  She’s so nice.  And her husband is nice too.  Ben’s really cool.”  Ben’s either a med student or intern or some sort of doctor-ish guy.  I’m pretty sure they’re not married.  🙂

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Lumpy

Norah and I left for Children’s Hospital at 11:30 this morning and arrived home at 6:30 tonight.  It was a long, tiring day, but the doctors and the rest of the staff were great.  Norah’s ultrasound showed that her thyroid is indeed enlarged, but it didn’t show a separate nodule or anything unusual beyond the fact that her whole thyroid is BIG.

After the ultrasound we met with a fellow and a resident in the endocrinology department.  I wasn’t sure what a “fellow” was (Dr. Abby Fleisch is definitely NOT a fellow in the gender-related sense of the word), so she explained that she had gone to college, gone to med school, completed her 3-year residency in pediatrics, and is now doing a fellowship in endocrinology.  She works with an attending physician who we also met with.

During our time in endo, there were at least 10 people who came in to check out the lump because it’s so unusual to see on a 4-year-old or really any kid younger than an adolescent.  Norah was so cute, lifting her head to show off her lump.  We had talked a lot about what she should expect at the hospital, and that she would be seeing new doctors there, so when we were sitting at Au Bon Pain surrounded by medical staff on their lunch breaks, Norah threw her arms open and said, “Are THESE my new doctors??”

There are basically two possibilities since the ultrasound didn’t show anything definitive.  One possibility is Thyroiditis, which would go away on its own.  If that’s what she has, she’ll take medicine for her high blood pressure until the thyroid issue resolves itself, at which point the rest of the symptoms would resolve themselves too.  The other possibility is Graves Disease, which is an autoimmune disorder.  Graves Disease would be treated with medicine to reduce the amount of thyroid hormone, which would resolve the other symptoms.

The trick is figuring out which of these is the cause.  More blood work was done today to look for specific antibodies.  On Monday Norah will have to drink some iodine and 2 hours later will have a scan to see how much iodine has been absorbed by her thyroid.  The next day she’ll have another scan to check the iodine in her thyroid again.  These test results should confirm one cause or the other, which will determine the treatment.  Meanwhile, she will be on a low dose of high blood pressure meds.  Her blood pressure is not high enough to be an emergency, but it’s pretty high.

I probably won’t have more to report until the middle of next week.  Thank you to everyone who called, emailed, and texted to ask for news.  Everything’s fine.

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Yup, That’s a Lump.

I’m headed to Children’s Hospital tomorrow with Norah, so she can have an ultrasound on her thyroid and an appointment with the endocrinologists.  A few weeks ago I thought her neck looked a little swollen, but then she changed position and it looked normal so I didn’t think too much of it.  Then on Monday I was sitting on the bottom stair and I saw her neck from a different angle.  As soon as I touched it, the 3 other grown-ups standing there pointed out that something was wrong. You can see the lump in the photo of Norah with our friend Norm at right.

I called the doctor and he didn’t seem worried at all.  He said to watch it for a few days and to call him if it bothered her, if it was hot to the touch, became red, or changed size.  This morning I made an appointment to see him, and when he came into the exam room it went like this:

Dr:  “So, you’re here.”
Me:  “Yup.”
Dr:  “Did it get bigger, turn red, or get hot?”
Me:  “No.”
Dr:  “Is it bothering her?”
Me:  “No, but it’s bothering me, so you can tell me I’m crazy but I want you to look at it.”
Dr:  “You’re crazy.”

He then commenced the exam…
Dr:  “Yup, that’s a lump.”
Me:  “Well, it doesn’t look right to me and I have thyroid issues so I get concerned when I see swelling in that area.”
Dr:  “It’s bigger than what I was imagining when we talked on the phone.  You were right to follow your instinct.”

Considering that he didn’t ask me how big it was when we talked on the phone, I’m assuming that he had already decided it was nothing during our phone conversation.  In the office today he said that he thought it was definitely thyroid-related because the lump moves when she swallows.  Norah’s blood pressure was also high which is a symptom of hyperthyroidism.

They sent some blood off to the lab, and this afternoon another doctor called with the news that yes, her thyroid levels were very elevated.  The doctor from Children’s also called to talk about tomorrow’s appointment, and she said that it’s not that common for kids to become hyperthyroid, but it does happen.  The ultrasound may give us a clue as to what’s causing the excess thyroid hormone, but most likely it will just show an enlarged thyroid, not an overproductive nodule.

From what I’ve read, it may resolve itself eventually so that she won’t need medication forever, or it may not.  If it doesn’t resolve and she has problems regulating how much thyroid hormone is in her body at any given time, they sometimes “deactivate” the thyroid at which point she’d have to take synthetic thyroid forever (like I do).  I’m guessing they will at least give her medication for the high blood pressure in the short term.

The doctor from Children’s asked me if I had seen any other symptoms.  When I look at the list of possible symptoms I see lots of things that we thought were just part of Norah’s personality or a phase she is going through – hyperactivity, emotional issues, constant eating without weight gain, excessive pooping (sorry – TMI).  It’s possible that by reducing the level of thyroid hormone some of these issues may be resolved.  Or not.

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