Image

Lucky Me!

14 Jun

Lucky Me!

How many times have you heard this since you were diagnosed?

A Quote for the Thyroidless

13 Jun

I said this once in frustration. Now it’s become one of my favorite personal affirmations.

Dear Thyroid Doctor

22 May

Dear Thyroid Doctor,

Did you know that 25% of women will develop a thyroid condition during their lifetime? Look out into your waiting room…you will see at least 3 of these patients every day. According to the American Thyroid Association, up to 60% of those with thyroid conditions are unaware of their condition. They are coming to YOU for help. So why don’t you care?

You dismiss us. Ignore us. Pass us off to your staff members who care even less about us. You accuse us of lying, exaggerating, not trying hard enough, being clinically depressed. You alone hold the key to our quality of life, but you refuse to hand it over. You spend hours and hours diagnosing and treating other chronic diseases with the latest and greatest options. But if one 1960s thyroid drug doesn’t work for us thyroid patients, we must be the crazy ones.

Well, I’ve got news for you. The jig is up. We are smarter than you think we are. Smarter than the people you pay $10/hour to act on your behalf and deliver our “normal” test results. You can’t talk circles around us anymore. We’re not going to take it. We are banding together to expose your lack of compassion and lack of knowledge about our disease. So, unless you want to see your patient list decreased by 25%, I urge you to take this advice.

Do a little bit of research. TSH is fine for an initial diagnosis, but why on EARTH would you use a pituitary hormone as the sole marker for successful thyroid hormone treatment? Would you diagnose and treat a diabetic on their postprandial blood sugar alone? At a minimum, please check the TSH, FT4, FT3, and ALL THREE sets of thyroid antibodies. What do you have to lose? If our insurance won’t cover the tests, ask us if we will pay out of pocket. Nine times out of ten, WE WILL. We will do ANYTHING to feel better.

Please acknowledge that we are more than our lab values. Normal ranges do not apply to everyone. Talk to us about our symptoms. You are comfortable dosing an antidepressant until a patient feels better with absolutely no accompanying bloodwork. I am begging you…release us from the TSH prison!

Do not accuse us of lying about how much we eat or how much we exercise. You tell us “everyone can lose weight,” and “you just need to work harder,” and to “join Weight Watchers.” I challenge you to join me in the gym sometime. I log everything I eat into an online food diary, and I eat 1200-1400 calories a day. How much do you eat? How do you explain that I was thin before my diagnosis? Magically I started eating cupcakes all day at the exact same time my thyroid was removed? YOU need to work harder at optimizing our thyroid treatment. I assure you, it is easier than putting us on antidepressants, cholesterol drugs and insulin.

Take the time to train your staff. Frankly, they are jerks. They roll their eyes at us, they won’t answer our questions, and they have no idea what they are talking about when they deliver your messages. More and more, we are paying cash for your services. You are running a business. Accept accountability for your employees and their behavior. Hold yourselves to a higher standard. Do things right the first time. In the end, it makes less work for all of us.

Finally, explore thyroid treatment options beyond Synthroid. Synthroid alone works for very few patients…it’s like replacing an entire car with just an engine. (Sure, the engine is important, but how are you supposed to steer?) When a sick patient doesn’t respond well to one of the many antibiotics available, what do you do? You try another one. When a depressed patient doesn’t do well on an SSRI, you try an SNRI. Why are thyroid patients any different? What do you have to lose by trying a T3-T4 combination of drugs, or dessicated thyroid? Make yourself familiar with the other available options – Cytomel, Armour Thyroid, Nature-Throid, Westhroid. Consider using a compounding pharmacy. If you are concerned about the risks, then talk to us about them. Let us make that choice. But honestly, have you looked at the side effect profile for the top 5 most prescribed drugs in your practice? If you are comfortable with the risks of Zoloft, then you should be THRILLED to prescribe any of the thyroid replacement drugs.

If you partner with us in our quest for optimal health, we will be fiercely loyal to you. We will recommend you to the world. We will make sacrifices in budget to make sure you get paid on time. We will wait as long as it takes to see you, and we will greet you with a smile. So what’s holding you back? The only thing you have to lose is 25% of your patients.

Discharged

9 May

I think I have finally lost it. After 10 days of waiting (on top of 4 weeks) and 6 separate phone calls, I am still high and dry with no test results and no new thyroid drugs. It’s a long story, but here are some things I said (okay, screamed) to the medical assistant that I probably shouldn’t have:

I don’t know why I paid so much money for nothing. I was better off with my Endocrinologist.

I don’t care if you were at a funeral – you are not going to make me feel guilty about your lack of organization.

My hairdresser had a better maternity back-up plan, and all she was worried about is that my bangs were too long.

She ended the call by saying I was discharged as a patient, and not entitled to my results. I can fill out paperwork to have the results sent to my new doctor (whoever that might be). I called back an hour later and apologized, but it doesn’t really get me anywhere closer to a solution. Me and my big mouth. After two years of “it’s in your head” and “we don’t have your results” and “you are in normal ranges” and waiting and waiting…I just can’t take it anymore. I can’t just sit around and leave my fate in the hands of people who don’t listen and don’t care.

For the first time since my surgery, I really feel helpless. I’m depressed and sad and I don’t know what to do. I am a pretty educated patient…I know the system, the science, the speak. I am willing to pay whatever it costs, and in this case, paid it all up front. Yet I am in worse shape that most other patients that just shut up and do what their doctor tells them to do. Is that what I am supposed to learn from all this? That it’s ME and not THEM?

I wish I could forget my “before” life. Then maybe I wouldn’t grieve it like this.

Cursed

30 Apr

I am beginning to think I have a thyroid doctor curse.

On April 2, I had my blood drawn by a new holistic doctor, with the goal of obtaining a compounded thyroid medication. I was encouraged by this appointment…the doctor was super knowledgeable and talked about the possibility of thyroid antibodies causing my symptoms, gluten intolerance, or the need for a different mix of T3/T4 or Synthroid combined with dessicated thyroid. I was SO excited that I was going to have a chance to get a mixture of hormone that was exactly right for me, so I gladly shelled out the CASH UP FRONT for a myriad of tests.

They drew 10 vials of blood. I passed out cold and was awakened by smelling salts. But that’s beside the point…

One week went by. I tried to schedule a follow-up appointment, but the receptionist insisted I had to wait until they had my results.

Another week went by. I started to panic.

The doctor is pregnant…when is she due again? Why won’t they schedule me? Is the receptionist just being lazy? What is going on?

I called the medical assistant. Again, I was told to wait. But I don’t wait very well. So I called back and scheduled a follow-up without explaining who I was, just to get on the doctor’s calendar. When was the soonest available appointment? April 30.

Whew. Good thing I forced my way onto that calendar. The doctor is due to have her baby in mid-May. April 30 isn’t that far away…I could feel normal just in time for summer!

Anyone want to take a guess as to when the doctor had her baby?? TODAY. April 30. And instead of taking the time to write up recommendations for me, I GET NOTHING. My appointment is simply CANCELLED.  I have to wait until the medical assistant talks to the doctor sometime next week to see if I can even have my own blood results. Really??  If I went on maternity leave with that amount of preparation, I am pretty sure they would fire me.

I think I am going to go to medical school just so I can get myself some decent treatment. Why not? It will probably take me just as long to find a doctor who cares.

AARRGGHHH!

No Shortage of Time

2 Apr

Well, I guess I panicked for nothing. Because there has been a shortage of Thyrogen for an OUTRAGEOUS two years, the nuclear medicine department at U of M is overbooked. I won’t have my scan until July 16, which means I will start the low-iodine diet (we thyca survivors call it LID) on July 2. Plenty of time to get myself down to Whole Foods and Trader Joe’s so the experience doesn’t have to be so horrific. I guess I will be snacking on apples during the fireworks this 4th of July, and I won’t be eating spaghetti the night before my annual 5K. That’s okay, because I am about to drink my coffee, and much to my delight, I don’t have to go “creamless” for another few months.

The journey continues!

“We have your Thyrogen prescription.”

31 Mar

I just got off the phone with Walgreens Specialty Pharmacy in Ann Arbor. My Thyrogen is in. That means I am finally going to have my whole-body scan to see if there are any remaining thyroid cancer cells in my body. My bloodwork hasn’ t shown any signs of tumor growth, but the scan will look at the cellular level. I nearly had a meltdown on the phone…it was so, so weird. They basically just called and asked me for my birthdate before they would even reveal why they were calling, and then I had to pay my $250 co-pay over the phone before they would ship it to UofM. Maybe it’s the anxiety, but that REALLY annoyed me. I told the pharmacist, “This is an insane way to deal with cancer patients that have been waiting 8 months for medication. I want to hang up on you, but I am afraid you’ll give my Thyrogen to someone else.”

Well, you survivors out there know what this means…low-iodine diet. Here are just a few items I will have to part with for two whole weeks:

  • Milk
  • Cheese
  • Yogurt
  • Chocolate
  • Bread
  • Salt
  • Pre-packaged or restaurant food of any kind

I seriously feel like crying. I probably won’t even lose weight. Speaking of, there has been ZERO change from upping my Synthroid to 125 mcg, so I made an appointment with a holistic doctor. She’s going to try to compound T3/T4 thyroid medication for me, but I don’t have my blood tests back yet to determine the exact ratio. I was supplementing with iodine and selenium (it wasn’t effective), and she told me to stop. That’s a good thing, since now I have to deplete all of the iodine in my body.

Okay, let’s try to be positive. Ideally, I will go on this stupid diet for two weeks, get two injections, and then get the scan over with. (Hopefully there is no iodine in Xanax, because I am not going in that giant tube without it!)  There will be no microscopic cancer in my body. Then I will start on my perfectly compounded (and probably very expensive) thyroid medication, and by summer I will be completely back to normal.

Right?

Dos and Don’ts for the Thyroidless

10 Mar

Throughout my thyroid cancer experience, I have had unlimited amounts of support from my family and my closest friends. I have even been supported by new friends online who are having the same experiences. I am one of the lucky ones. I only have to deal with the annoying “helpfulness” of acquaintances and strangers. So, to help those of you who know someone who had thyroid cancer or is struggling to overcome uncontrolled hypothyroidism, here is a list of dos and don’ts.

DON’T EVER SAY…

“I know someone who had thyroid cancer and they’re totally fine!”

Would you say that to someone whose house burned down? “My friend’s house burned down and they are fine now!” No, you wouldn’t say that. So don’t say that to someone who also just had a devastating, life-altering experience.

“If you had to get cancer, that’s the best one to get, right?”

This one is my favorite, because even I said it when I was first diagnosed. What it really means is, “I’m not going to look sick to you and I probably won’t die from this, so people around me won’t have to feel guilty and uncomfortable.”

“At least you are alive.”

Again, is that something you would say to someone who told you their house burned down? Yes, I am happy I am alive. At least we are ALL alive. That doesn’t mean it is okay when crappy things happen to us.

“Have you tried (fill in the blank here) to lose weight?”

No, I haven’t tried that! Wow! What a lifesaver you are! Let me assure you – I have tried EVERYTHING.

“Were you a smoker?”

No. But would that make you feel better about my diagnosis? Like I brought it on myself or something?

“Not everything is because of your thyroid.”

You’re right! Not everything! Just my body temperature, my metabolism, my hormone regulation, my digestion, my ovulation, my energy level, my brain processes, my hair, my nails, my skin and MY MOOD.

DO SAY…

“What can I do to help?”

We are tired. ALL THE TIME.

“…”

That’s right – just don’t say anything. Listen to us vent, and then just don’t comment.

“It’s okay.”

Be there for us, and cut us a lot of slack. Sometimes we get overwhelmed and we overreact to things. Imagine waking up one day and not having any control over how “off” you feel. Imagine having the rug pulled out from under you and everything you have ever known as normal is GONE. Sometimes we just don’t have the energy to pretend that we are the same. We’re not.

I am doing well…I really am. And I know how blessed and lucky I am. I know how much worse it could be, and I am grateful for what I have. But that doesn’t mean I don’t miss life as I used to know it. That’s why I keep fighting. I am working so hard to put the missing pieces back together, and I have to believe that someday I will. Just don’t tell me that you know someone else who did…and now they’re totally fine.

Why I Hate Generics

22 Feb

I was a pharmaceutical rep for seven years. My closest friend is still a pharmaceutical rep, and we talked today about her struggles selling a branded drug against the onslaught of generics. As a salesperson, I fought the good fight against generics every day. As a disclaimer to everything I am about to say, I am still pro-pharmaceutical industry. But now that I take a daily chronic medication, I feel the need to advocate from the patient perspective.

There are several reasons I refuse generic medication, but here are the most important reasons:

  1. Generic drugs are only required to have between 75% and 125% bioavailability (active drug in the bloodstream). Branded medications are required to have 100% bioavailability at all times. I currently take 125 mcg of Synthroid. That’s less than 1 mg. A variability of 25% either way could absolutely affect my daily life. Read more here.
  2. Generic drugs must have the same ACTIVE drug as the branded medication, but God only knows what they use for inactive ingredients. My guess is that they use whatever is the absolute cheapest. Inactive ingredients affect absorption, and also contribute a great deal to the side effect profile of a medication. Patients also often have allergies to these additives. Read more here.
  3. A large portion of generic medications are manufactured in India and China, where quality control standards are far below that of the U.S. Read more here.
  4. Generic levothyroxine has been PROVEN to be inferior to branded Synthroid in multiple clinical studies. Ironically, I used Synthroid as an example for why doctors shouldn’t switch their Actonel patients to generic Fosamax. Little did I know I would live and breathe that study just four years later. Read more here. 

So you might think this doesn’t matter, because your doctor doesn’t prescribe generic drugs. But guess what? Unless the doctor specifically writes D.A.W. -DISPENSE AS WRITTEN on your prescription, a pharmacist can switch it out with a generic. And you might get a different generic manufacturer every single time you refill…different bioavailability, different inactive ingredients and different quality on a month-to-month basis.

I went into this experience as a very educated patient. I specifically asked for a D.A.W. prescription from the moment I woke up from surgery. Yet on FIVE different occasions over the past six months, I have been harassed at the pharmacy to switch to a generic.

“Sarah – we didn’t fill your prescription because your co-pay is $30. Are you okay with that?”

“We don’t have any Synthroid, but we have levothyroxine, which is the same thing.”

I just want to scream every time. It is NOT the same thing! Pharmacists do this to patients because the profit margin on generic drugs is HUGE compared to their branded counterparts, and inventory costs are much lower. Therefore retail stores incentivize pharmacists to convert to generic drugs. I am all about Capitalism…I really, really am…but at least give me the opportunity to get what I pay for. At least be truthful and say there is a cheaper option, but it might be less effective.

So, fellow thyroid warriors, be educated. Ask questions. And be prepared for one more battle in the war for optimal treatment.

Still Bargaining…

21 Feb

Finally! Something to celebrate!

I just got a call from U of M, so I thought I would do a lunch hour post to share some news.

First, my ultrasound showed no abnormalities and my thyroglobulin (cancer tumor marker in the bloodstream) level is still undetectable.

The rest of my numbers are as follows:

  • B12: 490 (normal, and way better than before)
  • Vitamin D: 31 (normal, but could be higher)
  • TSH: 1.55 (I think that’s high – Dr. E likes it)
  • T4: 0.97 (I think that’s low – Dr. E likes it)
  • T3: 2.4 (that’s just about perfect, and that is while taking Cytomel)

So what does all this mean? It means I FINALLY get to go back on 125 mcg of Synthroid. Dr. E wants me to drop the Cytomel, but I begged to stay on it. We’ll see what she says.

OTHER NEWS:

  • I continue to live flour-free, and I think I am happy with the choice. I feel healthier overall, so it’s worth it. I never thought I could win the battle over bread, but I did! I don’t even crave it anymore.
  • I added back my iodine supplement (Iodoral) and started taking Selenium. It’s been 4 days, and I have lost 3 pounds. It’s hard to attribute the weight loss to any one thing, but whatever, I’ll take it. I am researching and closely monitoring my response to iodine, and will post separately about my findings.
  • I am feeling really good. I always forget to reflect on the improvements in my health. My energy level is almost normal, my hair totally stopped falling out and looks normal, my skin is not as dry, and I don’t feel as depressed as I did before. What’s changed? Cytomel? Flour elimination? Added estrogen? The fact that I have been exercising a little bit more? There’s no way to know, so I will just keep doing what I’m doing!

Cheers to being cancer-free, and to a higher dose of Synthroid!

***THIS JUST IN***

 I get to stay on 5 mcg of Cytomel with the new increased dose of 125 mcg Synthroid. It’s what I have been pulling for all along! I am seriously jumping for joy!