Courage doesn't always roar. Sometimes its the quiet voice

at the end of the day saying, 'I will try again tomorrow'.

OHSU Visit #1
ninja cupcake
unna
On the 16th we finally drove the 2 hours north to Oregon Health and Sciences University for my appointment with Dr Madison. The drive up was uneventful but we were both groggy from getting up early after a night of tense sleep. Wow OHSU is a labyrinth!! We got lost a bunch but had left plenty of time so made it to my appointment in plenty of time.

After checking in and doing the normal height, weight, blood pressure stuff the Dr came in to see me. Unfortunately he didn't receive my chart, MRI, labs or anything with my referral :( Can't even comment on that I am so angry. Luckily I had copies of my labs and the reports from MRI and Thyroid scan so the appointment wasn't a total loss.

After a lengthy question and answer session and a physical exam of my neck and shoulders, I was sent up to the lab. Seeing the huge strip of labels about made me cry... but 16 tubes of blood later I didn't feel TOO bad so we wandered around campus trying to find where we parked and to start our way to IKEA for treats :D

Still 2 days later I am feeling woozy and weak, eating as much iron rich food and protein along with lots of water to try and help my body rebuild the blood. I may have to have another round of labs like this, plus another tube if he wants to run the DNA sequence to look for a specific genetic 'break'.

Plan is to wait on labs to return in 2-3 weeks for some of them, he will do more research and give me a call to make a plan when he knows more. Seems like we are back to the beginning on this, but I feel better about the options.

(no subject)
ninja cupcake
unna
So we FINALLY are getting a referral up to OHSU!! I have been wanting this since... oh only November or so!

Also got taken off the Tapazole since my labs were still high. Am now on a beta blocker to help with the symptoms and after 2 days at only half a dose it seems to be helping. Will start on a full dose Sunday night... just worried about getting too low a pulse if I rush it.

So now I wait to hear from OHSU, Endo didn't have any idea how far out their appointments are but I am going to guess a month at least.

Beginning of a new chapter at least...

3rd verse??
ninja cupcake
unna
Finally got in touch with the Endo midweek about not sleeping and other hyperthyroid symptoms I am having that are getting worse. He upped my dose of Tapazole to 10mg a day now and we have an appointment on March 6th to I assume talk about the sleep issues and maybe about what is the next step.

Endo Asst sent me a paper copy of my labs in the mail, so I should have them soon and can see where the Free T4 values were. Going to guess it also is up since the TSH and FT4 seem to be following the same curve of increase over the last several months. Unless of course the medicine has miraculously fixed something, but I doubt that since he is still titrating it up each time we talk.

I feel like this health drama is getting boring to follow, but writing it all out helps me to keep track of things which I fear will become an issue later down the road as things get more complicated and my brain cognition levels decline.

Second verse... same as the first!!
puking rainbows
unna
So not a lot of exciting news here. Still getting more and more hyperthyroid... feeling hot all the time, horrible frustrating dreams, cognitive issues, acne, not hungry, itchy skin, trouble staying asleep, about every 3rd day I can't sleep for 36+ hours even with OTC meds. I think I liked being hypothyroid better!!

Had labs done after 4 weeks on the 5 mg Tapazole:

Free T3 3.7 Range (2.3-4.2) Normal (first time running this lab)
TSH 4.961 Range (0.400-4.00) High (highest yet)
Free T4 *forgot to ask, will update when I call back* (was high last time)

So it doesn't seem like the med is doing ANYTHING but will have to reserve that judgment until I get the FT4 results. I wonder why that test dosen't show up on the online patient portal chart with everything else.

Got the message of 'Bump up to 7.5 mg of Tapazole and come back in 4 weeks for labs' again. So frustrating. Going to call in next week and ask for sleeping help that is stronger than the OTC stuff. Also going to demand to know what the status is of sending me up to OHSU Brain Institute or if he 'forgot' again.

Is it sad I still wish this had been the simple tumor on the pituitary? At least that was a simple surgery, short recovery time and done. This waiting and titrating around with medicine that doesn't seem to be working is driving me crazy and wasting my life.


(side note: I like how the first auto correct for Tapazole is tadpoles LOL)

Update time!
ninja cupcake
unna
I keep meaning to post an update but then forget.. typical :P

So the MRI showed no mass on my pituitary (yay!) but that means we are back to the beginning with finding a diagnosis. So that means my brain and thyroid are perfectly normal if structure.

Plan now is I am taking Tapazole (Methimazole) 5 mg a day for 3-4 weeks to see if it will affect my TSH and FT4 levels. Just a waiting game now until it is time to go get more blood labs drawn mid-Feb.

Follow up with the lack of communication is not much... I ended up mad and made an appointment with the Dr and he explained things well enough. I guess from now on I just make appointments if I want real answers. I ended up calling her back on Thursday and got the 'No mass on pituitary, start Tapazole, come back in 4 weeks for labs' message which I found unacceptable. No information, no explanation for medication, no anything! Hence the pissed off appointment on Monday.

Unsure where this leaves me or what is wrong with me... just trying to live and not stress out over everything.

Yet again...
sting
unna
My brain MRI went well on Monday... back and neck cramped a little from holding still for so long but within a couple of minutes of moving around all was back to normal. I had the injection of contrast stuff, didn't react and made sure to drink LOTS of fluids to flush it asap. Tech said that the report would be at my Endo by tomorrow (Tuesday) so I didn't question it and went on my way.

Tuesday I waited until 3 pm to call and make sure they received the report. Went straight to voice mail so I left an upbeat message just asking to confirm they got it and to please call me back. No call back.

Wednesday I was very upset so I called at 3 pm again, once again to voice mail so I left a very detailed very angry sounding message. Called to see if the scheduler knew anything and my call went straight to her voice mail too. So I called the front desk of the office, it i a huge office with I am guessing 10 doctors, to make sure that they were actually IN the office this week and got confirmation that yes they were in. When I said I had left messages and hadn't gotten a call back in 2 days she put me on hold for a minute.

When she got back on the line she asked my name and DOB to pull up my file, said the notes said that they got my messages, I asked about the MRI report, she said there was nothing noted about it at all. I think she could feel my anger over the phone and said she would walk back and make sure they were in the office. 5 minutes later she gets back on the line sounding sort of happy, said that the Endo had just gotten my report and was sitting down to review it. I hope she got the assistant in trouble.

I think this means his stupid assistant hadn't given it to him yet!! The imaging place probably had it there by office open on Tuesday and even after I called yesterday to ask about it, he still didn't get it. What the fuck!!!

But this all confirms a couple of things... she is still there (damn it) and still is an incompetent and lazy bitch as ever. Which means that I now turn into a bitch and ask for clarification on dates things were supposedly done to compare with when things actually were done. I hope she gets fired... I am so done with all this!!

It isn't like finding out you have a brain tumor isn't hectic and scary enough, then I have to fight to get them to do their fucking jobs!! All of this testing and such could have been done in a month... and here we sit almost 4 months out STILL waiting on the MRI report that has probably been sitting in her 'to do' pile for 2 days.

So now I wait until 11 am tomorrow and if I haven't gotten a call back, I am going to go sit in the office. No more phone tag since clearly she can't work the phone OR the fax machine.
Tags:

At last!!
ninja cupcake
unna
Yesterday was the big day... my MRI finally got scheduled for Monday!! :D Of course there had to be a delay in getting the order over to the imaging center (so expected now!!) but I didn't have to wait on a PA, only lab work, so it was scheduled fairly quickly still. So relieved!

It was also a 'no-sleep' day since my body decided it only needed 4 hours of crappy sleep the night before. Made an already busy day even more tiring. We loaded a few things into the car to take to storage, got my metabolic lab panel that is required before the MRI drawn at the lab, unloaded the stuff at storage, went to lunch and then I had my therapy session for the first time since mid-Dec. Lots to do and talk about!! This was the first session that actually felt 'hard' emotionally... guess you can only hold stuff in so long.

Then I got home and slept for 7 hours...

Hoping today is a better day energy wise but I have nothing really planned so I can relax if I need to.
Tags: ,

Success!!
ninja cupcake
unna
At today's Endo appt he agreed that my thyroid was totally normal, and is ordering an MRI finally. He is sending me to the highest strength MRI in town, even called the Dir of Medicine at my insurance to get it approved super fast. He called me back about the insurance ok before I even made it home from his office... I think he is motivated now :P

I should hear from the imaging center tomorrow, probably schedule it Thur morning or Friday since I have therapy on Thur afternoon sometime (need to find card!!).

Feels so weird to be excited to have a very rare TSH pituitary tumor, but if it helps me feel better long term then lets go!! :)
Tags: ,

My RadioIodine Thyroid Uptake and Scan
ninja cupcake
unna
After waiting almost 2 months, making WAY too many phone calls to figure things out... the day of the test was finally here. I was fasting from midnight on so that my system was empty when I took the capsule full of I123.

We arrived at the hospital after dealing with freezing temps and frost almost an inch thick in places, defiantly not the norm around here! Thankfully I was having a 'hot' day so the cold weather didn't bother me too much. Checked in with the front desk at the Heart and Vascular Institute because that is where the Nuclear Medicine Dept is housed.

Finally got back into the 'Intake Room' where the tech measured the output of the capsule, asked the same bunch of questions, verified I wasn't pregnant from the lab dept and then at 9:53 am I swallowed the capsule.

thryoidscanjan2013capsule

Click here to read more...Collapse )

And so it goes...
PB and Jelly
unna
Life has been pretty calm now that the testing date fiasco has been settled. Enjoyed a very nice holiday break with friends up in Portland area Fri-Sun, stayed in a hotel which was fun but also very glad to get back home with my bed, fish and normal smells.

Almost thought I messed up the 'no seafood/fish/seaweed' rule yesterday when I realized my 'Green Goodness' smoothie had spirulina in it! Luckily a quick search showed it was a fresh-water algae and should not contain iodine. Been craving shrimp and fried cod really badly, probably because I can't have them and they are normal holiday foods for me. Not too much longer, will be a 'Welcome to the New Year' dinner treat :D

Therapy is on hold for 3 weeks while the office takes a winter break. My goals for this period are to continue with the 2 meals/day and prepping 2 proteins for the week, adding in getting laundry folded and organized (aka off the floor piles) and also to research some classes or activities that I can attend 1-2 times a month to increase my social outings in the new year.

Now to snuggle in with a warm cocoa and try to figure out more of the Wii.