#to wait the full 6 months and she said i should call the endocrinologist immediately so i can get on the waiting list right away

[frankensteinmutual]

guys. I'm getting t

[coll2mitts]

Thyroid Follow-up Scans - Year 1 and Year 2

So, 2 years later, here I am again with this thyroid bullshit.  I started writing about this last year and never posted it, so here I am posting a whole year’s worth of crap.

If you’re ready for a lot of angst and general bullshit go ahead and read below the cut.  There’s gifs and pictures, though, which I think makes it better.

A year ago, I went in for my appointment with my endocrinologist, and asked him if it was possible for me to do my follow-up testing at Beaumont’s Farmington Hills campus, because it’s 5 minutes from my house instead of 30 minutes, and, if you remember, I wasn’t a super big fan of my nuclear med doctor.  He was very distressed when I asked him this, and insisted I stick with Beaumont Royal Oak because “just because it says Beaumont on the door doesn’t mean you’re going to get identical treatment.  They’d just perform the scan on you, they wouldn’t even have you meet with an oncologist.  It’s only once a year, you can handle going to Royal Oak once a year.”

Yeah, except it isn’t “once a year”.  It’s 5 different appointments (minimum) I have to take time off of work for, and as much as I love fighting through rush hour traffic to get to the hospital for a 5 minute appointment, I don’t want to do that.  The endo also gave me the (false) impression that maybe they’d just give me a CT scan or something instead of making me go through a month without meds.  I was like, cool, yeah, if I just have to go in for one scan, I don’t give a shit, sign me up.  So, I called in mid Feb to schedule my one-year follow-up.

(Sidenote: I don’t think my endo was wrong about Farmington Hills, especially considering my interactions and my mother’s interactions with that hospital, but the dismissal of the amount of effort it takes to get there when you’re hypothyroid and feel like you’re gradually turning into stone was frustrating.)

I hate how they used to do scheduling at Beaumont, it’s the worst.  You get put on a list, and then a person calls you back several weeks later when they get their schedule for the next month and you can then work out a date and time.  They actually didn’t forget about me this time, and scheduled me for a consultation appointment at the end of March.  I decided to take my boyfriend with me and test out a new theory that if I prove that SOMEONE cares about me, the doctor would.

One very early morning in March, I dragged my poor boyfriend out of bed to get to the hospital.  Of course, when I got there, they had no record of me being in the system, so I have to wait 30 minutes to even check in at reception.  Then I sat in another waiting room waiting for the nuclear medicine doctor.  They ran me through the same questions they did last time, and handed me a sheet with all of my prescheduled dates for dropping the meds, starting the diet, drinking the radiation, etc.  Of course, they hand me this sheet and I’m like “wait, so I’m going through the whole process again?” and the PA just says, “Yes...?” as if it was a weird question to ask.  Then he took my pulse and was like, “Are you anxious?” “Yes.” “OK.”

The nuclear medicine doctor came in after that and was like, “Oh, I remember you!  But you (pointing at my boyfriend), you’re new!  This a new husband, significant other, friend?” “New boyfriend.  Just brought him so he could take in the whole experience.”

Like, legit, my boyfriend rarely talked the entire time and she couldn’t stop going on about how much she loved him.  Then she talked directly to him about how cranky I’d get, and how I’d need to go on the diet, and how he should be supportive, and then follows that up with, “But it’s only 3 weeks, you’ll barely notice a difference!” staring directly at me.  Yeah, sure, no difference.

The dates they had me scheduled were starting May 1st to drop the meds, with the scan being in the later part of the month.  They wanted to make sure that the spot in my jaw was gone.

This is where my confusion sets in.  Initially, the spot in my jaw didn’t show up as part of the scan - it only showed up when they did the full radiation dose to kill the cancer.  What makes them think it’s going to show up this time?  Also, my endo told me that they would be monitoring my Thyroglobulin levels, and if they were zero that would mean I was cancer free.  They have been zero the last two times they’ve done it and they’re still making me do the scan.  Is testing the Thyroglobulin levels not indicative of cancer being present in my body, then?  Could cancer be growing and now show up in those levels?

But we move forward, and come the end of April I stop taking my meds (a day early, because at this point I wasn’t taking my pills on Sunday).  I start the diet 5 days earlier than they told me to, because a week didn’t seem long enough, and I don’t want to fuck around with the results.  The first couple days off of the meds weren’t great, but then it became pretty manageable and I thought, “shit, this is lucky, maybe it won’t be as bad as before!” and of course, after I say that, my body decides to shut the fuck down.

I started to have weird dreams again (although not as bad as last time), my body would ache constantly, and I didn’t have any strength left.  The week before my thyroid scan I decided to go up 4 flights of stairs to get to a meeting at work and it almost killed me, so I figured that was the point where I should start taking it easy because riding the elevator doesn’t make you a weak person.

When I called for the results of my TSH, I barely crossed the finish line at 44.  Thank god.  I went in the following Monday to get the tracer dose, and at this point I’m in super high spirits because I’ve been drinking the optimism kool-aid.  Everyone has been telling me I’ll be fine, that I won’t have to be on the diet again (everyone is SO FUCKING FIXATED on the diet aspect of this whole process like that’s the worst part instead of, I dunno, being off your meds and dealing with the anxiety of getting a cancer scan).  I’ve been the one peppering my statements “if everything looks ok”.  So, the nuclear medicine doctor comes in and is like “OK, hopefully this is the last of it, although you did have thyroglobulin levels present, so we have to figure out where that’s coming from.”

Oh.

Then nurse wheels in the dose, I drink the radioactive material (shown above stored in a lead egg - I asked the nurse if it was OK to take pictures and she’s like “YEAH! Let’s open it up so you can see inside!”) and drive into work with a now-familiar sense of dread.

That’s the vial they store the iodine in.  What’s shoved inside it is the plastic straw I used, because now that’s radioactive, too :P

Of course, when I get to work, I immediately start digging in the thyroid cancer forums (DON’T DO THAT) and got super depressed and thought great, now I have to go into surgery again, or do beam radiation or chemo, or maybe it’s spread to all my organs and this is it, I’ll be part of the 3% of people who die from thyroid cancer.  But 6 hours later I realized the only thing that I know, for sure, is that this changes the best case scenario to “I have to do all this bullshit again next year to make sure the second round of I-131 works”, and I’ve *done* that before so it’s way less scary.  Worst case scenario, we find out it’s not iodine avid and I have to do something else.

So, I go in the next day to measure my radiation levels, and what was normally supposed to be a 15 minute appointment turned into an hour because they sprung a neck scan on me.  No time to get anxious about it, cause there I was, under the plate, cursing god and all that is holy I’d have to do this twice this year.  They don’t say anything about the results, send me home, and I go with Beau-James to the full-body scan the next day.

This is the machine they use to find the radioactive material in your body.  You lay on the bed on the right (where the amazing heated blanket is balled up), they literally strap you down (feet and body) so you’re essentially a firmly wrapped burrito, and then the machine wheels you into the area with the flat plates.  Then, the nurse adjusts the plates so they get REALLY FUCKING CLOSE TO YOUR FACE, and over 40 minutes it guides you through the machine to see if it can find anything.  At least they let you wear headphones.

I laid there for a head scan, the full body scan, and then to really freak me out, a chest scan.  Then, after waiting for what fucking felt like an eternity, the doctor comes out and is like, “You’re gonna be fine, it’s still that spot in your neck.”

“What spot in my neck?” “The one that showed up after the treatment last year.” “I thought that was in my jaw?” “No... no.  In your jaw?  There’s no spot in your jaw, it’s in the middle of your neck.” ...The middle of my neck.  That was causing tightness in my neck, that caused me to go to the ER.  That all my doctors convinced me was a result of my anxiety.  Was fucking thyroid cancer.  Cool.

The spot was so small, though, that she said she didn’t want to treat it because treating it would cause me more harm than good.  And she didn’t want to send me for a CT scan because a scan for any thyroglobulin level under 11 wouldn’t be approved by my insurance (mine was 3).  Her recommendation was to: a) come in the next day to get ANOTHER neck scan, b) get a ultrasound on my neck to see if we could find any other masses, and c) wait it out until next year.  Which meant another round of testing.  Joy.  

Her hope was that was it would just burn itself out since it was so small.

I went in the next day for neck scan #3 of the year, and she said the spot was already fading on the scan, so she felt optimistic.   But I know my body and it’s ability to fight things on its own, so I wasn’t feeling super great about it.

Flash forward to now, year 2 of thyroid cancer (third time being scanned), and I get the ultra sound (doesn’t show anything), and I do the blood cancer scans (zero thyroglobulin), and still ramping up for the tests this year I know I’m gonna be fucked.  Because those tests have never been an indicator of what is really going on with my body.

I go in for my initial appointment again, do the song and dance of “how are you feeling, what are your symptoms?” etc, which doesn’t mean anything because they operate on what the blood tests and the scans show you.  The last 4 or so months I could tell I was hyper... I was super angry all the time and hungry constantly.  BUT I kept telling myself, no, that wouldn’t make sense, because I’m tired all the time and have gained a stupid amount of weight.  And literally the nuclear medicine doctor tells me, “I don’t know why you’re tired all the time, it must be something else, because your last blood test showed your TSH level at .4.”

My last TSH test was back in November.  And I didn’t know that before because my endo *snail mails* me my results and they’re hand written and say things like “keep taking the meds, you don’t have cancer”.

Now, I had called to schedule the appointment to see the nuclear medicine doctor back in February, even though last year my scans were in May.  They schedule me to go meet her in early April, but then rescheduled for late April.  When she hands me over the dates for going off the meds and the scan, I’m expecting May again, but this time it’s late June, “So you’ll be out of school.” “I’m not IN school, I’m 31.” “You’re still young enough to be in school.” “...But I’m NOT.”

Doesn’t matter.  I get to be in a hypo daze for 2 of the few months of summer we have in Michigan.  Want to go hiking?  Biking?  Walking?  Fuck you, hobble around, have a nap and cry at Serta Mattress commercials.

For the third time in my life, I go off my meds and start chugging along.  It’s hard for me to climb stairs, I start having dreams about animatronic dinosaurs without skin on trying to eat my face, I cry at the dumbest things.  I can’t sleep for more than 3 hours at a time, and when I wake up I don’t necessarily feel like I’m awake.

I manage two teams at work, neither of which have been around long enough to know about my cancer, and a new boss who also has no clue what’s going on.  I try to hide feeling like utter garbage, because this year hit me way harder than last year.  After being nudged by my friend Erin, who has also suffered through Thyroid cancer, I finally broke down and took the week of my scan off of work.  Even then, I STILL thought I didn’t have to tell anybody because I’d just be gone for a week, and that doesn’t seem weird.  I just didn’t want to be known as “Cancer Girl”.  Or, more importantly, make people think that I couldn’t handle my job because that insecurity runs THAT deep.  Being a female who works in software is super fun.

When I finally got my blood test done, my TSH level was at a 54.  And my thyroglobulin level doubled to 6.  Whomp whomp.  I went into work the day I found out my results and basically told everyone what was going on, because if they had to treat me, I wasn’t going to be an radioactive idiot who worked from home like last time.  Unlimited PTO means I get to use it, right?

So, I go in for the tracer (this is literally what they do to you to make sure you don’t spit radioactive material everywhere), the 24-hour uptake, and the scan, and they haven’t even finished my chest scan when the doctor bursts in and says, “Well, I can’t see anything.”   Apparently the thyroid tissue in my body is no longer iodine avid, so they can’t treat it with 131.  She wanted me to come in the next day for another scan just to be sure, but she was going to recommend a PET scan to see if that would show anything.

It took an entire week of her fighting with my insurance company to get the scan approved.  The year before she told me they wouldn’t approve a scan for anybody with under 11 thyroglobulin, but she was advocating HARD.  When they finally got approval, I had to go in the day before for a blood test to make sure my TSH levels were over 20, and I couldn’t eat any carbs or sugar because they needed my blood sugar level to be under 200.  The idea is that cancer tissue eats lots of sugar, so a radioactive sugar concoction will show up on the scan.

The actual day of the scan I asked Beau-James to come with me for moral support, but then found out it’d take 2-5 days for an oncologist to read the scan and send it over, so I wouldn’t hear anything that day.  Basically, they injected me with the radioactive material, we got to hang out in our own private room for an hour and a half while my tumors ate the sugar, and then they sent me in for the scan.

I know I’ve mentioned before how fucking claustrophobic I am, and how goddamn terrible the nuclear scans were.  Beau-James has sat in the room with me for a few of them, and this last time I was like, “Oh god, I always forget how CLOSE they get to your face,” and he says, “Eh, it’s like 2 inches away,” AS IF THAT ISN’T TERRIFYING.  When I had asked the nurse if the PET scan also gets close to your face she’s like, “If you can handle the other test, this will be a breeze.”  I think she was being generous with her definition of “breeze”, cause they do stick you in a tube, and it does feel close, but she was correct in the fact that it didn’t bring me to unparalleled levels of anxiety where I want to claw my way out of the machine and run screaming, which was nice.  It moves you around a lot, too, giving you some variety on position, and I spent a lot of the 25 minute scan with my head outside of the machine, so it wasn’t too bad.  After it was done, they sent me home, and Beau-James and I drank beer and ate burgers because I no longer had to worry about any funky diets.

Today I got the results back from the PET scan, and I was both like 0% surprised by the results, and simultaneously terrified by them.  The head/neck/chest scan showed nothing, so they still don’t know where the thyroid tissue is.  The nuclear medicine doctor said at this point we’ll just “watch and wait” for the tissue to present itself, which is both annoying and slightly relieving.  The other part of the scan, though, was the curveball.  Apparently my left ovary picked up a lot of material, so they want me to get it checked out.  I’ve been complaining to my doctor about this ovary for about a year because it makes my periods FUCKING UNBEARABLE to the point of me crying on my bed praying for death because the pain is so bad.

So, watch this space, cause I might be providing ovarian cancer updates next.

Sigh.

[thyroxy]

Thyroxy Part 2 – The original Thyroxy – Something’s gotta give

I moved interstate to start university and as my thyroid levels showed no sign of calming down we decided I should see an endocrinologist while i was in this more ‘civilised’ part of town.

I was 19 at the time and it was explained to me that there wasn't much likelihood of the levels balancing out at that age so he recommended I destroy the thyroid either by drinking radioactive iodine or having it surgically removed and go onto thyroid replacement hormone for the rest of my life. The alternative, keep doing what we’re doing and ‘wait and see'.  We met him with the same concerns about having hyperactive thyroid levels during study at uni, so doing nothing wasn’t really considered. We’d come to him for a solution. 

I decided to have the thyroid surgically removed. I couldn't imagine drinking a radioactive juice... "here you are lovey, a tonic for the thyroid gland, a plastic cup of full of fluorescent radiation, drink up! And don't forget to avoid pregnant women for 12 days! Enjoy!" No, that didn't sit well with me.. so I chose surgical removal.. Although I thought I was a mature adult I have to admit I think I just wanted to hang out in hospital for a bit..

So I had my thyroid removed in November 2012. I was placed on the thyroid hormone and sent on my way to monitor my levels with the GP in 3 months and then again in 6 months and then again maybe once a year. 

So I did that. I took my pills and I went to uni. I partied so hard for another year or two. I slowly got constipated and bloaty. I put on weight. I had been living at college so I thought it was just 'fresher spread' but no matter how hard I tried to eat well and exercise nothing budged. When I moved out and tried going paleo. Nothing worked. I was running and cycling and doing body weight resistance exercise. I was drinking metamucil followed by a coffee to even do a little poo.. if I was lucky. Maybe my coeliac was playing up? I went to the doctors and told them my history. They'd immediately check my thyroid levels that came back as 'a bit too high' and asked me to reduce my dose. After some research and trying to understand my conditions better I was certain my thryoid levels had tipped the other way and I was having symptoms of hypothyroidism (low thyroid function). 

Hypothyroidism   Hypothyroidism means the thyroid gland is underactive and fails to secrete enough hormones into the bloodstream. This causes the person’s metabolism to slow down.

The symptoms of hypothyroidism can be mild, moderate or severe. In its severest form (myxoedema coma), hypothyroidism is potentially fatal and requires urgent medical treatment. Symptoms of hypothyroidism can include:

fatigue and low energy levels

depression

slow heart rate

unexplained weight gain

intolerance to cold temperatures

fatigued and aching muscles

dry, coarse skin

puffy face

hair loss

constipation

problems with concentration

goitre (enlarged thyroid gland).

Of course this wasn't technically true.. I didn't have a thyroid anymore! But my replacement levels certainly didn't feel like enough.

I tried to find a better GP and my coeliac friend recommended this young doctor who had been helpful with her issues.  I went to her with high hopes and explained all my symptoms. She recommended a dietitian and drinking movicol as well as metamucil to get the bowel moving. The dietitian said something like 'more healthy fats and fiber in the form of grains’ on top of my paleo diet. So I started brown rice and ate more avocado among other things. Nothing changed.

Eventually I worked up the courage to say how I felt.. that I felt like I wasn't getting enough thyroid hormone.. that I was maybe hypothyroid. My doctor disagreed with me because my bloods showed TSH and T3 were too high and I should actually decrease my dose even more. I remember leaving this particular doctors appointment, starting the long journey home, so frustrated and nearly in tears because I just knew something was not right.

I did what she said and a few months later I started getting night sweats and was really fatigued. I scoured the internet again for clues. Maybe I was going into early menopause?! I was 21.. I didn't get my period because I had the implanon bar, so I had alot of the symptoms of premature menopause. I raised these concerns with my doctor and she put them at ease. I cant remember what the excuse for them were , anyway I didn't have premature menopause (woo!) but still felt like shit.

I kept treating my symptoms and got through uni ok. In my last year I woke up at a music festival with terrible, itchy welts anywhere my body had been touching something or my clothes were tight. I immediately called out my stupidity and admitted I shouldn't have bought a dodgy sleeping bag from the op shop.. I inspected my bag over and over and didn't find a bug and my camp mate who slept next to me didn't get bed bugs from me either. Nevertheless when I got home I cleaned and cleaned and cleaned everything. The welts died down a little but the random rash didn't go away. It would spring up in weird places at weird times. My doctor recommended an antihistamine and we would 'watch this space'. The antihistamines calmed the flares but didn't last a full 24 hours like they promised. The welts would come back with a vengeance and I noticed they'd spring up in places where there was fresh blood circulating. Like after swimming freestyle laps my calves and legs would be covered and my eyes would be puffy from the goggles (see below).

I had to laugh at it..

But it really did suck. It was crazy itchy, uncomfortable and pretty ugly, as you can see.  I was moving back home because I was nearly finished uni and it was time for a change.