Saturday, August 24, 2013

Here We Go Again Part 7

On July 23, I took my first dose of Armour and felt no different, but I didn't expect I would, since the thyroid is a slow reactor.  I didn't develop a curly tail or floppy ears, either, at least not yet.  But who knows, I could sell tickets.

We went back to work getting ready for the garden walks and the party.  Day by day I was starting to feel worse.  The headache was getting stronger and my heart seemed to be beating harder, and my moods?  Well, I could (and did) cry over just about anything.  Drama Queen, I'd chide myself, you're nothing but a DQ. 

I saw a t-shirt the other day on a guy at a rock concert that read :

Cancel my subscription.
I'm tired of your issues.

The people around me NEED this T-shirt.

I'd read online, yes, there I go again, reading.....that the transition from Synthroid to Armour is a little tricky sometimes and one of the mistakes made by doctors and patients is not raising the dose high enough, soon enough.  By August 10, about two and a half weeks on the new med, I was really starting to feel downright awful, but the adrenaline rush of getting ready for the big day kept me going.

We got through the party and it was a beautiful day.  There were some funny things that happened that day, and I do fully intend to finish the booyah post just as soon as I'm done bellyaching about this.  (That is, if I ever do get done bellyaching about this.)

The day after the party was also busy, we had to clean up and then there was a family reunion to go to and more garden guests and finally, the following Monday, I had a chance to slow down.  I didn't have much of a choice about the slowing down part, my body was doing it for me.  I was dizzy, my heart was pounding like a jackhammer, and the headache was now what I guess qualifies as a migraine for it was Incredibly Bad.   

This past week has been a blur.   I did have to sub for our exercise class leader at church twice and really did a bang-up job at that.   I told the ladies about my dilemma and they understood.  I went through the motions with the exercise but that was all.  I even had issues working the DVD player, it is amazing what a low thyroid can do to your motor control and logical thinking.

Other than exercising at church and watching the town repave our road, the time was spent mostly in my chair, down and out, hearing Dr. N's words, "You're not going to feel any better," echoing in my ears.  That was when I decided to start writing this epic saga.  I couldn't do much else.  And when I'm low, the stinkin' thinkin' creeps up on me, around and around I go.

Here I went and fought the good fight to be put on the new med and now look at me.  The doctor has the right to say, "I told you so."

I feel like a little kid who has begged his mother to let him eat an entire bag of candy and then suffered the consequences his mom warned him of.   Talk about a kick in the backside.   I had let optimism creep in, and see where that got me?  Pride goeth before the fall and all that.  My pride is definitely gone, so much for being my own advocate.

 I got the prize and now I'm miserable.   Self-pitying fool.  This isn't the way the story is supposed to go.  I'm supposed to be feeling fantastic and dashing about like I've just found the Fountain of Youth.  Sheesh, I need a shower, that much is certain, but there won't be any dashing going on anytime soon. 

  I remembered Dr. N said, "How did I know it was my thyroid causing the symptoms?"  It could be something else.  What if I was now going hyperthyroid instead, maybe this dose is too high instead of too low?  Or maybe it isn't the thyroid after all.  Had I arrogantly diagnosed myself when it was something else more sinister in the wings? 

I called two of my friends, Nancy and Patti.  Both of the dear ladies listened to my tale of woe in turn for hours.  I am ashamed to admit, It Was All About Me.  Just like these blog posts.  Me. Me. Me.  I'm such a bad friend/blogger.  Ann was spared the drama because she had left the week before to go on a vacation with her sister, so she was safe from my whining in far-away Canada.  Talking it all out sure did help keep me sane, though.  I have wonderful friends. 

Then out of the blue, I remembered talking to a girl I went to high school with about thyroid issues and joint pain and all the hormone stuff over four years ago, at our thirty-fifth class reunion.  She and I hadn't socialized in school much, we didn't have the same classes, but she had heard me griping to someone (imagine that?) about the thyroid stuff and wanted to talk to me.  There was loud music playing and it was hard to hear each other, but I did remember her telling me about a place where they did hormone saliva testing and a nurse practitioner who specialized in treating hormone imbalances.  I hadn't heard about this before.  She told me she had been going for two years and felt wonderful.  She encouraged me to have it done, too. 

I don't know why I didn't go right away.  Money is always the big concern, and a lot of the testing is fairly expensive, so I thanked her and told her I'd keep in touch.  Ok, it 'only' took me another four years of thyroid madness and  being brought to my knees by finding what I thought was going to the answer only to find out it wasn't before I called this friend again last Monday.

"You know, I have often thought of you and wondered if you went to see *Mandy."  (*I'm changing the names here, in case this doesn't work out.)   "How are you doing?"

I told her.  She told me she has been a patient of Mandy's clinic for six years now and said, "What are you waiting for?  Make the appointment, you'll feel better, I'm sure of it!" 

I felt hopeful,  maybe this is the missing piece.  I called the clinic and was told the first step of becoming a patient was to attend an introductory seminar of three hours and then I would be offered the chance to purchase a saliva test kit to take home and, well, basically spit in.  Then, two weeks after the test is done, the results would be sent to the clinic and I would then be contacted to make an appointment which is 90 minutes long.  (90 minutes?  Wow, I can't remember many appointments with any health professional lasting even 9 minutes.)  My friend had told me the consultations are amazingly comprehensive, she said it was truly life-changing. 

The only problem was help from Mandy and the Women's Clinic was at least two or three or more, depending on her case load, weeks away.  Can I last that long?  I made the appointment for the seminar on Tuesday night, anyway.  Baby steps to recovery, Karen. 

 Finally I was down to my last Armour pill of the thirty day prescription and even though I felt like dirt warmed over, I had it refilled.  Despite the fact I was supposed to wait six weeks before a recheck of the TSH, I called the doctor's office.  I told the nurse my symptoms, that I was fully aware it was a bit early to recheck my levels, but I was fully aware I was in trouble. 

"Well, traditionally we would want you to wait another two weeks before we recheck," the nurse hesitated.

"I can't wait another two weeks," I said, "Trust me on this. I need a TSH test."  My voice has, for some reason, dropped at least an octave, I sound like a breathless Greta Garbo.  It's creepy.  Truly.

She checked with Dr. N and called me back the next day, I was to go in for another TSH test.  In the meantime I attempted to make my own arrangements to try to get the bloodwork done, but the lab said their hands were tied, they would have to wait until they received orders.  Such a head game.  Such a head ache.  Ouch.

This was last Tuesday.  I was in a panic.  The doctor's office was on the far side of town and I'd have to drive in rather heavy traffic to get there.  But I couldn't stop crying for very long and the bouts were very unpredictable.  Sort of like what you're supposed to do if your clothing catches on fire, I would just Stop, Drop and Cry.  After sobbing awhile, I'd feel weaker and a little mental relief, but not for long. 

Along with the tears and flapdoodle, I had no energy whatsoever and my Clumsy Meter was off the charts.  I was dropping stuff and my reaction time was way off.  How was I going to get to the lab for the blood test?  And where is the place, anyway?  I was on Mapquest, trying to figure out a route while mopping up my tears when Carl called from work.  There was no way he could get off of work on such short notice.  I was between breakdowns at the moment and assured him I'd be fine, don't worry, I'll figure something out. 

I hung up with Carl, and had another crying jag as I stared at the map online.  Green Bay has been undergoing massive road reconstruction the last few years and with the new roads have come the new traffic circles, or Roundabouts as they call them up here.  I don't mind the single lane roundabouts too much, but the two and three lane ones throw me for a loop even when I'm feeling good.   They are also installing new flyover roads over the freeways and it is a real mess figuring out how to get from Point A to Point B. 

I wasn't sure if there were detours involved, I wasn't sure how many (if any) roundabouts were enroute, I wasn't sure where the place was, and I wasn't completely sure what day I was on.  This prompted another crying jag.

 Joel called me on his lunch hour right as my jag was in progress, poor fellow.  I hadn't heard from him for a few days, so I imagine he was wondering what in the world was happening now.

"Hi, how are you feeling?"

"Oh, hi," Sob sob, "I'm not feeling too good right now," hiccup, hiccup.  "I'm trying to figure out how to get to the lab for blood testing.  Do you know how much road construction is in that area?  Do you remember how to get there?  I'm on mapquest, and I think I remember, but I'm not sure."  Sniff, sniff.

"I don't think there's any road construction in that area.  But are you even fit to drive?" Joel asked.

"I don't know, I think so, maybe," I said.  "Dad's tied up at work, and I can only get in for a 2:30 appointment."  I finally stopped bawling, gosh I was ashamed of myself.   "Ok, I'm better now, I can do this thing. Don't worry, it'll be fine.  So how have you been?"

"I have to go back to work, so just take it easy, ok?" Joel said.  "I love you."

"I love you, too," I said, and after I hung up you all know what I did.  I felt as helpless as a newborn kitten.  Pass the tissues, please.  My dog Pudding was licking my feet and making anxious noises.  She didn't like the noises I was making either.  Petting her dear little head was a comfort. 

This will never do.  I have to get hold of myself.  I got a drink of water and went back to the map again and laid out my course.  Normally in a situation like this I wouldn't be as much of a coward; I'd be scared, because I don't like driving in traffic, but I wouldn't be paralyzed.  Boy, I was a sad sack. 

The phone rang again.  "I will be there to pick you up by 2," Joel said.

"What? No, Joel, don't do that, you'll get in trouble with work."

"I will be there at 2." Click.

Oh, I felt guilty, relieved, thankful, blessed and back to guilty all in one rush.  My good ol' negative self talk was back in a flash along with the tears, 'Now you're dragging your sons into this mess.  Wow.  Great work, Mom.  You're not even out of your 50's yet and you're making your children haul your behind around.'  I hate that voice in my head, and I let it live there for free, on top of it all.  It serves no purpose whatsoever, and needs to be evicted.   

Joel collected his Maternal Unit and drove me to the lab promptly at 2.  He'd left work several hours early for this, and I still can't thank him enough.  Would I have made it there on my own?  Probably.  But who knows?  Joel said he couldn't live with the thought of an accident happening that may or may not have been my fault if I was driving.  I alternated between expressing my gratitude and falling apart on the twenty minute drive.

The lab/nurse practitioner guy, Mike, greeted me cordially and took me in the exam room to draw my bloodwork.  He was the same guy I talked to about the Armour and switching meds, and he has a surprisingly good memory.

While he was getting the procedure ready, we started talking about what was going on with me and though he was showing the appropriate amount of concern, I kind of suspect he didn't truly believe my thyroid was the problem either. 

"When I was in medical school, there wasn't much support for Armour," Mike said.  "In fact, I have to admit, we were told it was not something any doctor should prescribe any more.  I can prescribe medications, but like most other doctors I know, I  prefer to send you along to someone else if you want to use Armour.  It's just what we were taught.  I'm not saying the med is no good, but if you're not feeling well, I guess that's a foregone conclusion."

I didn't say anything.  I know. They told me so.

"Once you get your levels back, at least you'll know if it is the thyroid, even though it is kind of early on," he said.  "But you might have to make an appointment with your doctor anyway to rule out something else more serious, because I think it's pretty rare to have a reaction so quick.  Did you ever think of switching to a different doctor?  Or maybe trying an antidepressant?"

I was seated with the rubber band around my bicep while he was locating a vein to attack.  My eyes were tearing up and threatening to run over again, when suddenly, I laughed out loud.

"What a novel idea!  A different doctor!  An antidepressant!  A second, third, fortieth opinion!! Yes!  Duh, why didn't I think of that?!" 

By now I was crying and laughing at the same time, which I know startled him.

"Well, I was wondering about that," he said, "Sometimes you need to explore other avenues and not just assume your thyroid is the culprit.  Have you ever seen an endocrinologist?"

How long you got?  I rattled off the list of doctors I'd seen, the Good, the Bad and the Polar Bear Ugly Variety and he was a bit stunned. 

"If you had a couple of good doctors in there, why didn't you continue seeing them?"

 Fair question.

"Because they moved away to other states," I said.  "And I certainly hope I was not the cause of their middle of the night flights from Wisconsin, either."

Mike chuckled and said, "Are you sensing a pattern here?"

 By now, I'm actually laughing, this was pretty funny.  But hopefully not true.  Ya think?

"So do you think that somewhere in say, Montana, there are a bunch of former doctors hiding out in the mountains sitting around a campfire eating beans and mourning their lost practices?" Mike asked.

"Yes, that is a distinct possibility.  Can't you just hear them talking,  '"The only reason we're all here is due to  Crazy Karen, the Thyroid Patient in Wisconsin."' 

 I can see it now, maybe there is a Retreat Center and a huge support group for all the doctors I have ruined in the last twenty years.  Their meetings would be anonymous, of course.  "Hi, My Name Is Dr. E and I am a Ruined MD."  They could have t-shirts made too,

I Didn't Survive Crazy Karen's Thyroid Disorder

I could hear Joel chuckling in the waiting room.  I'm sure he wondered at that point why he had to drive me in because, after all I was laughing, and so was Mike.  But then again, maybe not.  I guess they call this sort of thing 'rapid-cycling' in the mental health community.  Laughing and crying all at the same time?  Is that a good thing?

 I was told once that truly insane people never question their own sanity, they simply believe everyone else is nuts.  Maybe I am going downhill more than I think, but so far, the only people I believe are truly nuts are half of the doctors I've ever dealt with.

So, not to drag this out any longer, here's what I did next:

I said goodbye to the Lab/NP Mike.  He promised results of the test in 24 hours.

Joel took me to Carl's work so I could catch a ride home and after thanking him profusely, he went on about his day.   David works at the same place as Carl, and he gave me a hug, too, before we parted.  I am so well and truly blessed to have these men in my life.

Carl and I went home, ate some supper and drove back to Green Bay for the 'Well Woman' seminar.  Carl couldn't attend because this was strictly for women, so he dropped me off at 5:30 and went to fly kites with Dave and a co-worker at a nearby park.  At least he was having a little fun, I hate to make others suffer for my goofy issues.

My head felt like a time bomb and my heart was hammering, but the lone woman I was seated next to didn't seem to hear it, so I relaxed a little.   Slowly the chairs filled up with women of all ages, some with their older mothers and some alone,  and then at 5:30PM Mandy started the meeting.

Despite having the Headache to End All Headaches and feeling sick, I was riveted to her talk.  I think (and hope and pray) I may be on to something here.  The meeting didn't end until 9PM and it was the fastest I have ever had time go in a situation like that.  I bought the kit for $258 and took it home with me.  I know it's expensive, but what other alternative can I try at this point?  I've already completed all the steps and by this Thursday, the kit was back on it's way to the lab for testing.  I hope I did all the steps right.  I hope there's no problem with the shipping.  I hope I hear from Mandy soon........I'll keep you posted on this.

Anyway, I was still waiting on the TSH test results.  I called Mike the following day and he said, "Nope, sorry Karen, nothing here yet, but I'll tell you what, I'll call you before I leave here at 6PM either way, ok?"

At 5:45PM, Mike called. 

"I had to call the lab to get the results, so your doctor doesn't have this yet, but your TSH is 12.5.  I guess you were right when you suspected the thyroid."


Wow, I was right for once.  I was so relieved to hear it was the thyroid.  I can't tell you how relieved. Maybe this is just a matter of getting the dose right.

12.5 isn't as high as my all time record of over 100, but it is a whole bunch higher than my normal 1.0 and definitely higher than 3.0!  I was only out four weeks, not six.  If I could have stuck it out for six weeks, I'm sure I would have had a much more impressive number, and you MUST remember, the Numbers are ALL that is important in this Sick Game.

I had just refilled my medication, and without hesitation, I took another half of a pill.  I know this is without doctor's supervision, but remember my research?  The biggest mistake found by fellow thyroid patients was the failure of the doctor to know that the starting dose shouldn't be held for too long (they say for no more than two weeks, and my symptoms certainly back up their anecdotal evidence) or the patient's symptoms would become much, much worse.  Then what typically happens is the patient goes back to the doctor complaining of feeling awful and they are told the Armour is to blame, we told you it was inferior, time to get back on the synthetic again.  Can you see the heartbreaking loop here? 

Armour has been around since the 1890's, which was way before the TSH test came into existence.  The way it was dispensed back then was upping the dosage gradually while watching for the ill person's symptoms to abate.  When a person felt truly well, they knew they had the right dose. 

Despite some doctors habits of warning me of the dangers of taking too much thyroid medicine and having a much too suppressed TSH number and going hyperthyroid, I have a question.   Why, why, why would any hypo patient want to overmedicate and become hyperthyroid?  The symptoms are similar and just as miserable.  I can't imagine anyone who has suffered from either of these two insidious conditions jumping at the chance to trade places.

We Simply Want To Feel Well. 

With just another half pill, my headache subsided in under an hour.  Again, what a relief, I can't tell you what it's like to have that pain gone for awhile. 

The doctor's office called me on Friday.  The nurse said I should increase my meds to the next level.  To be fair to Dr. N, I was surprised she didn't advise me to go back on my Synthroid.  This is a feather in her cap. 

"Doctor wants you to reschedule for TSH lab work on October 2."

So this is where I'm sitting now. I've increased my dosage to the next level per doctor's orders and am now waiting for the thyroid to respond.   October 2 is a long six weeks away, though.   My headache is still there slightly and my heart isn't as bad as it was, but I'm not feeling fantastic yet.  My energy levels are kaput. The crying jags have all but stopped, though, and that's another big relief.  Research tells me I am still at a low dose yet, so we'll see.......I'm not going to wait around to get worse, no sirree.  Someone, somewhere will be hearing from me.  (Yeah, like that does any good, ha.)

With any luck at all, I might have my first appointment with Mandy and the Well Woman Clinic before October 2, but who knows?  A lot of things could come up, but oh, how I hope it's sooner than later.   I forgot to mention, Mandy is a hypothyroid patient herself and believes Armour is superior to synthetic T4 meds AND she believes in optimizing her patients on their medication, whether they are on Synthroid or Armour.   She said, "While the TSH test is a good test, it is certainly not the ONLY test we use here, so if your doctors have told you you're 'normal' and you beg to differ, we can help you every step of the way." 

Oh, I hope so! 

I thank all of my wonderful friends, the near and dear ones and the far and wide ones, for putting up with this Woe Is Me Fest.  

I am truly blessed.

And now, I must get off my behinder and find a lawn mower.

At least I can do that sitting down. 


Alison said...

Cheers here, and smiles. This is encouraging news! Things are getting better. YOU are getting better. I love the description of how they used to know if someone was on the right dose of Armour. I mean -- D'uh! If you feel well, it's the right dose. I'm just hoping Dr. N doesn't move to Montana.

FlowerLady Lorraine said...

Dear, dear Karen ~ I do hope you will find some wonderful relief to this whole deal and soon. I'm glad your headache eased and the tears subsided.

Love, hugs and prayers ~ FlowerLady

Toni said...

Wow, Karen. I just caught up reading all of your entries, and all I can say, as I've learned to say down south, is..."Bless your heart!!" You have really been through it! That crazy little thyroid can sure do a number on a person. I had no idea. I sure hope that "Mandy" or Dr. N, or someone can help you find just the right solution. I will keep reading. You are part of finding the solution, though, because you know your body better than anyone else, regardless of what a test says. I am amazed at all y'all have accomplished at your place knowing that you have felt bad for so long. You are blessed to have such love and support from Carl and your sons. Take care

africanaussie said...

gosh what a time you have been through, but I do believe you are seeing some light at the end of the tunnel.

Karen said...

Hi Alison, thank you! I too am hoping I don't drive another good doc to the Survivor's Retreat in Montana.
I know if all the thyroid patients in the world got together, we'd be a formidable force since there are so many of us. And amen, 'DUH' certainly sums up the experience so far.

Jennifer said...

Hi Karen, It is awful when medication to make you better makes you feel terrible. My husband once switched to a new medicine for diabetics and it made him sick to his stomach constantly, gave him mood swings and made him always sleepy. The doctor had given him the impression that it was one of his few options for medication. But is wasn't the only choice at all! Now, he has switched medications and is back to normal (or normal for a diabetic anyway). My advice: question everything! Hope you get things sorted soon and you start to feel better Karen.

Karen said...

Dear Lorraine, thank you so much for your prayers and support, you are always there for me.

Toni, thank you! It's been a loooonnnnggg road to get here, that's for sure. I give Carl and our sons untold thanks for their support through all of this mini-drama. I think that's why we did do so many crazy projects around here at times, because I needed distraction from the misery, if that makes any sense. Ok, it doesn't, ha.

africanaussie, thank you! I'm feeling ok right now and hope for improvement as time goes on.

Thank you Jennifer, and I'm sorry to hear your husband went through his ordeal, too. You are absolutely correct, as patients we must question everything; our lives depend on it.

kate maryon said...

you certainly have been put through the mill. The weeping and tears and confusion, low energy etc sounds like what I went through with my adrenal gland...I was extremely thankful to find out what was causing it all and that I wasn't going crazy!... Thankfully they have finally found out what is causing you such upset... I'll pray for your steadily and speedy recovery back to health.
God bless.

Mac_fromAustralia said...

I haven't been keeping up with reading blogs lately, I'm so sorry to read of what a tough time you were having, I hope things are improving now.