Hypothyroidism Sucks!

What does being hypothyroid mean?  Sounds like a relatively simple question, doesn’t it?  I mean, if you ask anyone on the street, they just tell you that you’re on medication for life.  Hell, even doctors tell you that.  And that’s pretty much all they tell you too.  But is thyroid disease as simple as that?  Hell to the no!

What does being hypothyroid mean to me?  Simply put, everything.  Having been diagnosed 20+ years now has put some perspective on this, but the last few years have been the most enlightening.  The first few years it meant regular blood tests and obviously daily medication.  I didn’t think much of it for many, many years.  I took my pills, I did regular TSH testing and that really was the sum of all I and more importantly, my doctor did.

Now in all this time, my symptoms really didn’t go away.  I still felt tired, some days more than others.  I still found most things a lot more effort than they should have been to accomplish.  My doctor watched my levels, he’d ask how I felt, I told him, he’d tell me to keep an eye on it and if it got worse, we’d see about upping my medication.  it never got worse per say, but it certainly didn’t get any better either.  For all intents and purposes, I was still hypothyroid due to my symptoms vs having thyroid disease (symptom free with the right medication) and shouldn’t have been.  It wasn’t until I developed additional symptoms that I started doing my own research.

I’m still trying to get my doctor to the same level as I am in regards to more knowledge of this disease and I’ll give him credit, as he has been doing some research on his own and he’s slowly coming along.  But I’m just tired of struggling with fighting not only my symptoms, but to get proper help as well.  I’m tired of the long bouts of insomnia, the development of gallstones, the occasional need to get outside immediately because I feel like I can’t get enough air.  I’m tired of struggling to keep the brain fog at bay.  I’m tired of the months of pain in one (at a time) area that randomly starts up for no apparent reason.  I’m tired of working my ass off in the gym 6 days a week with both cardio and weights, improving my diet (yes, getting my macros right) and it not making a damn bit of difference in my weight.  I’m tired of weighing up how badly certain things need to get done because I am so drop dead tired right to my soul that I don’t even know how I’m still standing and dear lord, do I really need to do that giant pile of laundry or god forbid, take the dog for a walk right this very minute?  *sigh*  Yes, yes you do because it’s not the dogs’ fault you’ve got this pain in the ass disease, not to mention going to work or school naked is generally frowned upon.

I’m a responsible adult dammit but some days I just want to tell the world to fuck right off!  Even if the world were on fire, do not disturb me cause all I want to do is hide under my blankets feigning sleep cause who the freaking hell can sleep when your tired as sin but your body is so screwed up it won’t let you do anything but just lay there staring up at the ceiling?

Who’s bright idea was it to come up with a disease that makes you so tired you can barely keep upright yet as soon as your head hits the pillow it at the same time laughs at you and says “Nope!  Not tonight sweetheart.  Tonight we’re going to toss and turn and never get comfortable and just watch the time crawl by one minute at a time”?  I think we need to hunt that ass down and do unspeakably painful things to him.  Who’s with me?

 

 

 

Copyright © 2012-2017 Sandy Monk/Unleashthehounds blog. All rights reserved. Revised: ALL PICTURES AND CONTENT ON THIS BLOG ~ UNLEASHTHEHOUNDS ~ ARE THE SOLE PROPERTY OF Sandy Monk, and may not be used, copied or reprinted without express permission from the owner. Copyrighted 2012-2017

Disappointment…Anger….Determination

Today I was finally able to take time off of work to make my long awaited appointment with my doctor.  I was totally stoked.  My family doc has always been open minded and intelligent when it has come to various treatments in the past.  He has often spouted about naturopathy being a good alternative in certain cases.  I’ve often felt in all cases but I recognize it can be hard to pull away from the pharmaceutical gods when your livelihood relies on it.

Now I’m a fairly intelligent woman.  I’ve not just taken one source and run with it as true gospel.  I’ve actually gone to various sources, listened to various experts opinions from all over the world.  I’ve noted where they believe the shortcomings are in regards to testing and the tests they recommend to fill those glaring holes.  I’ve read. I’ve listened.  I’ve understood.  What they’ve said has made sense.

Especially as I am still living with the same symptoms as I had some twenty years ago when I was first diagnosed.

Clue #1 that something ain’t right folks.

Clue #2 would be that I now have NEW symptoms that are or rather, can be, all directly related to being hypothyroid.  By that, I mean I know I’ll always have thyroid disease, but by rights, if I was being treated properly, I should no longer be hypothyroid.  By no longer being hypothyroid, all my symptoms should be gone.  They are not.

I had my list of 10 tests all written down.  I was actually quite excited about finally taking that step forward to getting things fixed once and for all.  I was early, going through the information I knew, preempting some questions he might have as to why I wanted to change over to NDT.  I like being prepared, especially when dealing with someone who I assume is somewhat knowledgeable in the topic.

Finally my name was called and off I went to the exam room.  I have my list in hand (list? aghast!) and armed with the knowledge I’ve gained and convinced my doctor will speak with me in an intelligent manner as he has always done in the past.

Alas, it seems not to be.  Not only did I hear about how NDT is unreliable, but not as affective as synthetic thyroid hormone.  I informed him that because of my 20+ years on levothyroxine sodium, I had developed “Air Hunger” and have never stopped being hypothyroid.  I didn’t realize by rights I shouldn’t be hypothyroid anymore.  He actually laughed and said that I’ll always be hypothyroid.  I said if I stayed on levothyroxine, he’s quite right about that.  But here’s the crux of that comment.  I will always have thyroid disease.  With proper therapy, I should no longer be hypothyroid.  To be hypothyroid means that I still have symptoms (even a small handful).  To have no symptoms (hyper nor hypo) means I have thyroid disease…WITH NO SYMPTOMS!!  The key words.

I’ll be honest, he did look a little startled at my definition of the difference.  He surprisingly agreed with me and then started asking about what the individual tests were for.  He said he’d never heard of anyone testing Free T3 or T4’s before.  He had no idea why I was wanting Ferritin tested, nor a 24 hour saliva cortisol test.

So I gave him a little bit of medical information strictly in regards to the thyroid.

TSH as we all know tests the Thyroid Stimulating Hormone that the PITUITARY gland secretes when it detects that the thyroid is either not producing enough, or too much.  What the TSH does NOT test is the actual thyroid hormones at all.

Ferritin is for the hair.  Or because of hair loss rather.  And for those of us who are tired of cleaning out the gobs of hair from the shower drain, you’ll know how desperately I want that tested.  And of course the 24 hour saliva cortisol test to help ensure the start of NDT is off to a good start.

He has been kind enough to schedule the testing my little flight of fancy has produced and we’ll see if it is worth it when the results come back.  Condescending little bastard at times.

Although,  he did say at the end of the appointment that he thinks going to see an Endocrinologist may be a good idea, instead of me doing all of this by myself.  Could have knocked me over considering he’s always told me it’s not needed.  Guess he’s maybe realized he doesn’t know all he needs to know about thyroid disease, huh?

Before my Journey was a Journey

As my first post on my thyroid journey attests to, I simply was ignorant to what being hypothyroid meant.  I knew my grandmother had it on my father’s side.  I also knew that meant I’d be on medication for life.  Outside of that I really knew nothing.

But my story goes further back than that.  After my daughter was born, and even during the pregnancy, I gained a lot of weight.  Looking back that should have been a trigger since the first 5 months of pregnancy I couldn’t keep anything down but chocolate milk and oranges.  That was all I ate.  I took my materna vitamins of course, but food in general made me want to hurl just thinking about it.  Between the lack of appetite and the baby depleting my own body’s nutrients, you’d think I’d be losing weight hand over fist.  But no, I was gaining at an extraordinary rate.  So much so, my doctor became quite anxious about it.

Now here’s the thing.  Just about every woman that gets pregnant has thyroid issues during and approximately 12 months after.  Once the hormones regulate, the thyroid included, all is good.  Except for 20% of us.  Nope.  For us, the thyroid stays f*%@d up.

Now couple that with the knowledge that one of the significant signs of being hypothyroid is significant weight gain over a relatively short amount of time and the inability to lose it.

So why is it no one thought to check my thyroid?  They checked me for Diabetes and various other things, but not once did TSH come up in conversation nor on the blood tests to be done.  Yes I’m aware it’s easier to look back but still, I expect doctors to know more than I do.  That’s literally why they get paid the big bucks and I’m left waiting for my appointment for 3 hours.   Their time is precious, ours is not.

Dry skin.  OMG, dry skin.  For me it is especially along the hair line and scalp.  Speaking of hair, mine turned dry and dull and no amount of moisturizing did the job.  It was awful.  And being blonde, it looked and felt like straw.

I have spoken of the mood swings.  Ah yes.  Insomnia.  Welcome to never sleeping well again.  And seeing as you are already tired as hell all the damn time, no sleep helps with that soooo much.
Wait for it!  If you thought that was bad, wait until you get brain fog.  That’s when you couldn’t hold a coherent thought in your head for more than just a few seconds without losing it in that mental abyss forever.  I have become the post it queen!  I write things down everywhere.  I find them later and have no idea what the significance of it is, but I have it written down.  Lol!  Memory, or lack of rather.  I used to have a mind like a steel trap.  I could remember details for my job that had my bosses astounded at times.  Now I’m lucky if I remember to put on underwear.  Ok.  That’s a slight exaggeration, but you get where I’m coming from.  Again.  Queen of the post it notes.  They become your savior and nemesis all rolled into one little sticky package.  I hate them but I know I need them.

My nails grew brittle and hard.  They’d break just looking at opening a pop can or the like.

I grew restless.  Truly relaxing was a fantasy.

I developed joint aches.

I started to snore and heavily.

Oh, and gallbladder pain.  I developed gallstones and although I am still doing research on that, what I’ve read points to this too stemming from my out of whack thyroid.

Heart palpitations.  That was a little freaky.  I think most of us will tolerate a little unusual something going on in different areas, but the heart isn’t one of them.

I’m not sure these are all the symptoms I had, but they are the ones that stood out in my mind the most.  Seeing as this was 20 years ago too.  Mind you, some I’ve simply never lost, they just improved substantially.  I’ve also gained some or they’ve significantly worsened over the last couple of years.

Again, my symptoms worsening or new and improved ones, from my research so far at this point tells me that this is because of the Synthroid.  And I know for sure the “Air Hunger” or dyspnea is CAUSED by my medication.  Now that was just wonderful news.

But there is a light at the end of the tunnel.  Synthroid is NOT the only medication available.  In fact, NDT or natural desiccated thyroid is out there.  It is regulated and has been around for much longer than Synthroid.  PLUS, it isn’t just T4.  Since it is a natural substance, it has all the hormones present.

Again, my recommendation is research, research, research.  Find out what is best for YOU.  Your body, and mind, will thank you for it.

 

 

Copyright © 2012-2015 Sandy Monk/Unleashthehounds blog. All rights reserved. Revised: ALL PICTURES AND CONTENT ON THIS BLOG ~ UNLEASHTHEHOUNDS ~ ARE THE SOLE PROPERTY OF Sandy Monk and may not be used, copied or reprinted without express permission from the owner. Copyrighted 2012-2015

The start of My Thyroid Journey

I assume you’ve read part one so you are already aware of my blatant disdain for the incompetency of those that “treated” my grandfather.  Well, as it turns out, I’ve had my own bitter taste in regards to those in the medical profession.

Some of this is my own fault as I simply didn’t know all of my symptoms were actually supposed to be gone entirely.  I thought I would get “better” but not necessarily back to where I was, but let me start at the beginning…

Almost 22 years ago my beautiful daughter came into this world kicking and screaming like the tough little cookie she is.  For almost two years after her birth, I was tired, bone freaking tired.  All the time.  I could sleep 12 hours and oh how I dreamed I could, yet I’d still wake up tired.  I had no energy or gumption for anything.  I didn’t care what clothes I wore, whether I had make up on.  I’d even try and get out of plans cause it was simply too much bother to get ready.  If you are thinking that I am lazy, it’s really not a case of choose sweats and a good book over going out.  This was I’ll stay in my sweats and just veg.  Not actually do anything kind of tired.  And emotions!!  Whooheee!  All over the map!  Say the wrong thing and I’d be in tears.  I’d be happy one moment, sad the next, and angry the moment after that.

I wasn’t depressed as such, just no motivation to do anything.  Don’t get me wrong, I still loved, cared for and played with my daughter.  Got up in the middle of the night etc.  I just had the devil of a time getting motivated to do anything outside of what I had to.  This went on for the better part of two years.  Finally it was the heart palpitations that was the deciding factor to go and get checked out.

I had an ECG done as well as a whole deluge of blood tests.  I think I left the clinic about 5 pounds lighter due to blood loss.  I went back a couple days later for the follow up appointment and my family doctor told me that the heart palpitations was not caused by a prolapsed heart as he had originally suspected, but because of my thyroid.  He told me I was hypothyroid and that I’d have to take a pill a day for the rest of my life and that I need to try and take my pills at the same time everyday to help my system keep a balance.

That was it.  Come back in 3 months to test my levels again and we’d alter my dose when necessary.  I was put on Synthroid and have been on Synthroid for 20 years. But that was all of the information I was given.  He treated it rather blasé and I have to admit, so did I.  I didn’t take it seriously nor did I deem it a “real” condition, I am embarrassed to admit.

Until recently.

I’d gotten much improved on Synthroid and we’d gotten it to a manageable level and my life differed improved from what it was.  It was not back to normal.  I still wasn’t right but I was significantly better than I was.  Again, I cannot stress enough  that I in no way was given any inclination that my symptoms should no longer exist once on medication.  He said Synthroid would help me feel better.  It did.  I told him during every appointment over the last 20 years that I was not back to normal but was a lot better than I was.

Until recently.

A couple years ago I hit a deep and dark depression.  So bad, I was actually prepared to end it all.  I found myself emotional and erratic.  Again with the happy one minute and sad beyond recompense the next. I thought it was due to an extremely stressful divorce after an extremely stressful abusive marriage.  I thought my brain was crashing due to all it’s had to tolerate and endure.  Not to mention a job loss in there  as well.  It was a couple of years of hell.  That is why I didn’t seek help.  I’ve always been strong and have endured through some significant life experiences in the past, so didn’t think much of making it through this latest episode.

Those dark depressed days were getting more common and staying for longer.  My energy was drained.  I lost one job because I hated it and didn’t care whether I kept it or not.  I was losing my lust for life. The ONLY factors that kept me from saying screw it entirely was my sister who reminded my every day that I was important, that I mattered.  My daughter was the other anchor.  She may be all grown up but she still needed me.  Not just to be her Mum but also her friend. And there was also my rock.  My foundation of bedrock.  My best friend whom I am lucky enough to now have as my partner as well.  He was there for me during the middle of the night police station statements.  Through each and every dark episode with the patience of Job.  Making sure I saw the positive in all and reminding me that I’m not just leaving what negative thoughts or experiences I’m having but also all the good ones.  Not to mention the devastation my loss would have on my daughter and to those that I care about and am close to.

I was at an all time low.  Worse than before I was diagnosed.  And that is low, believe me.  I’m still there to be honest. But due to the off chance of seeing an article on hypothyroidism on Facebook I started to see the light.  And a tremendous relief rushed over me.  I wasn’t losing my mind.  This was all classic symptoms of hypothyroidism on the wrong medication.

I don’t know about you but I had no idea there were options for other medications. Or why there were other medications. Were there differences? If so, what were they? What would they do for me?

Dear lord! Once I started delving into the pot for more and more information the angrier I got. I had symptoms I didn’t realize were even symptoms until I read them, and their medical name. One was actually caused by the medication itself. A side effect of the medication I was supposed to be on for life. Don’t you think that little tidbit of information should have come up at some point in conversation over the last 20 years? How about the fact I should have MORE THAN JUST MY TSH LEVELS TESTED!!

Now that I know what TSH levels are, I see how freaking pointless they are except to tell you that your pituitary gland is doing its job.

I’m going to give a synopsis of the information I had gleemed that pertains to me. The one thing that I will tell anyone that has thyroid disease is that you need to do your research. Don’t just go by what the doctor tells you (if anything), find out information from other patients, specialists (you’d be surprised who have twitter accounts or their own blogs) but most of all soak up every little detail. You just never know when you’ll find the answers, and help, you’ve been looking for.

The links to a couple of my favourite and most informative Facebook pages I’ve found. They aren’t the only ones out there but they are fabulous sources. I will be continuing my saga tomorrow as it’s far too much post in one sitting. This one is already pretty damn long.

Anyway, without further adieu, the links:

https://www.facebook.com/thyroidsupport?fref=ts
https://www.facebook.com/StoptheThyroidMadness?fref=ts

Oh, and I recommend buying their books too. I’ve got pages highlighted and tagged and will be bringing them to my appointment. I also have a list of questions for the doctor too.

But please, check out these pages and they also have blogs, so if you’re not on FB, I’ll see about scooping their blog pages and posting them for you.

Copyright © 2012-2015 Sandy Monk/Unleashthehounds blog. All rights reserved. Revised: ALL PICTURES AND CONTENT ON THIS BLOG ~ UNLEASHTHEHOUNDS ~ ARE THE SOLE PROPERTY OF Sandy Monk and may not be used, copied or reprinted without express permission from the owner. Copyrighted 2012-2015