Monday, April 7, 2014

How I ended up on Levoxyl in the first place.

I knew my family had a strong history of hypo and hyper thyroidism.  So in my twenties when I was taking stab at getting help for my depression/seasonal affect disorder/PTSD, I reported this to my doctor and they ran a thyroid panel.

The results came back indicating I was hyperthyroid.

Great. Another diagnosis to add to my list.

They ran an uptake scan to get a look at how much radiation my thyroid would suck up in 24 hours.

That was an interesting experience. They take you to Nuclear Medicine and lead you into a room where the tech puts on a led apron, neck wrap, and heavy lead gloves, then opens two locked lead doors, then pulls out a 5 pound lead container and screws it open and pours out a single capsule. Then after all that they hand you the medication cup with a glass of water and say "Swallow this." You just scared the crap out of me with all that routine and now you want me to swallow what you had behind all this lead protecting gear? Gaaaah!!!!

I did though.  All in all I have willing swallowed radioactive material three times. Surprisingly it gets easier the more times you do it.

They called in to discuss the uptake scan results.

"P your hyperthyroid."

"What do we need to do to treat this?"

"Were going to keep an eye on it. Treat it if necessary."

And that was it.

HELLSBELLS!! What the hell is wrong with the world? I was suffering from thyroid symptoms and had been since I was ~19 years old. EACH doctor's appointment I would report them. It was well documented that I was having physical/mental symptoms.

*Face palm*

"okay doctor, its nice to know I have a medical condition that can get life threatening if left untreated that you are leaving untreated, thank you?"

I just resumed living knowing I was living with hyperthyroidism. Never had it tested again.

Fast forward to 2001 and I at my first OB appointment for my first pregnancy. I am giving them my health history and I am sure mention I have hyperthyroidism.

The doctor, looks up at me and shakes her head no. "If you were you wouldn't have gotten pregnant."

Kinda used to being treated like crap by doctors I snarked back. "Verified with an uptake scan in my twenties."

She stares me down with a glare and then sighs and reluctantly ordered a thyroid panel.

The next day I get a call from her, "YOUR HYPERTHYROID!" the urgent panic coming clearly over the phone.

No shit Sherlock.

What I didn't know and never bothered to research before getting pregnant is:

Untreated hyperthyroidism in a mother can cause miscarriages in the first and third trimester and can cause the fetus to stop growing all together.

My TSH was less than 0.05

Thyroid labs are kind of backwards, the LOWER the number is they MORE hyper you are. 

I was IMMEDIENTLY started on PTU to bring my labs back into alignment.

Now we have covered how sensitive to medications I am right? Imagine how well this went over in my system that was used to being revved up and functioning on extra thyroid hormones. ~16 years of functioning in hyperspace and now in a few days dropped down to normal.

UUghh. Not much fun. AT ALL.

So let me get this straight. When my hyperthyroidism is endangering only me, its left untreated, but if it endangers my fetus then it gets treated for it?

What the ?

While I was being monitored by the high risk neonatologist, he had three hyperthyroid mama's in his care. The other two's babies stopped growing in the third trimester.  Being hyperthyroid and pregnant means A LOT of ultrasounds and closer then normal monitoring. I beat the odds, not once but twice.

I stopped the PTU the day I delivered JUR. And in no time at all was suffering from the symptoms again.

Fast forward again, round two with second pregnancy. As soon as I tested I call for an OB appointment. And the secretary and I had this cheery little chat.

"I am  4 weeks pregnant and I need to schedule an appointment because I have hyperthyroidism, and need to be seen asap."

"We don't schedule appointments till 8-12 weeks along."

Maybe she didn't hear me? Giving her the benefit of the doubt I replied, "I have HYPERTHROIDISM it can be fatal to my fetus in the first trimester, I don't need to be seen in 8 - 12 weeks, I need to be seen NOW. Put me on hold and go ask the doctor yourself."

The doctor picked me back up and scheduled the appointment herself.

And we got some cool 3D pictures of Cletus the Fetus

I was once again on PTU.

But this time is was different. I took more of the med to rope my thyroid in. They had  to run me lower then last time and being then Hypothyroid I was experiencing psychotic thoughts (not unlike what I just lived with the last 10 months)

I stayed on the PTU after I had Hansolo, but I started to get they cardiac side effects of hyperthyroidism. the heart palpitations were really SCARY bad. After wearing a hoilter monitor for 3 days they had enough  to be concerned that I was heading quickly down a life threating path with the cardiac effects.

The endocrinologist kept waiting for my TSH to stabilize postpartum, but it never did.  When I stopped nursing we did another uptake scan and it showed what we all ready new....I was insanely hyperthyroid. Final diagnosis Graves Disease.


But treatable.

The decision was made to do the RAI (radiate my thyroid dead) to control the Graves disease. Can't cure the Graves but you can eliminate its target (my thyroid).

It all sounded so simple. Radiate thyroid dead, take thyroid replacement for the rest of my life.

So down the rabbit hole I went.

My endocrinologist was VERY firm that his patients only take the BRAND name thyroid replacement, because the generic can alter depending on which company makes them. So I was given a script for Levoxyl.

But in the back of my head, I always knew, if I needed them I had Armour Thyroid, Levothyroxine and Synthroid to fall back.

From 2008 to June 2013 I faithfully took it every day. I don't mess around with this. I have a mostly dead thyroid that has been permanently damaged, I MUST TAKE REPLACEMENT FOR THE REST OF MY LIFE.

Then the Recall happened.

Its funny to realize that, I have become a vulnerable human. I can't afford to be lost or stranded anywhere. I MUST have this medication to survive.

and now, unfortunately can also say....that the generic and brand name Synthroid do not agree with me.  (We didn't try the Armour)

Its Levoxyl and me baby. All the way.

(BTW, why I blog all this gobbly-gook is so my children can read this when there older and know me in a role beyond, food sever and transportation device and toothbrush gestapo. I do know it's of no interest to most of you. For you, you have to weed though these types to post to find the ones worth reading like...tomorrows.)

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