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?

January 2015 Journal

I’ve decided to keep a journal of sorts. Not a rendition of my day but more a record of my ups and downs and aches and pains. Not a lot of fun for you all I’m sure but I’ll be updating each month with as many days as I remember to do. Some just won’t qualify an entry as it’ll just be a regular day.

Today is January 18, 2015 and it’s actually day two of being down and slightly depressed. Insomnia has kicked in due to the constant pain in the right elbow which has been unbearable of late. Some days it’s not so bad but last couple the pain has radiated up to my shoulder and down to my fingers. I can’t lie on my right side as the pressure makes it worse. I can’t lie of my left side cause my elbow screams unless crooked a certain way. Laying on my back or front are my only choices and I hate sleeping in those two positions. Life can be cruel at times I’ve noticed.
So no sleep which obviously makes me tired which automatically makes me cold, cold makes my arm hurt more and the cycle continues. Just shoot me. 😛
The depression I’ve noticed seems to hit harder this time of year which I think has much to do with the fact that we should up our thyroid meds during the winter to compensate for the cold weather (new fact I was not aware of until recently) and a lack of sun. This winter has been cold and grey. I miss the sunny winter days. I want those back.
I’ve noticed today that I am getting an ache in my left knee. I’m hoping it’s just because of the damp cold that has settled in lately.
Damn, I cannot wait to get my meds sorted out. I want my energy back so I can get stuff done, shed some weight and help rid myself of some of these aches and pains.
Oh, and spring, pleeeaaaasse get here soon. 🙂

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

Tired doesn’t really begin to cover it

I’ve forgotten what it’s like to not be tired. And who knew there could be so many levels of tired!
There’s the pulled an all nighter tired. Partied all night tired (and hung over). There’s the new mum tired (which lasts from pregnancy to late teens, early twenties lol).
Then there is hypothyroid tired. This tired I had never experienced before my early twenties. This tired seeps right into your bones. It saps every ounce of energy, motivation and lust for life you’ve ever had right out of you.
You are so tired, you actually don’t care that you have to get up and go to work, or you’ve agreed to go out but you’ve now changed your mind as you simply don’t have the energy to be around people. The effort in getting ready to go out when every cell in your body is telling you not to, is astounding. I’m not sure I could honestly describe it to anyone that hasn’t had the displeasure of experiencing it.
For me, the tired began when I became pregnant. As to exactly at what point normal pregnancy tired grew into hypothyroid tired, I’m not really sure. They seem to have merged and become one as one lead to the other. So I had the first trimester tired which is pretty normal. You find yourself falling asleep earlier in the evening, or for an involuntary nap. It happens quite often during those three months and is all very normal. The second trimester I found my energy came back and it was relatively normal. The third trimester, everything is off. I found this was when my emotions really started to scatter, however this was also the time where sleep wasn’t coming as easy as it did previous months. Finding a position that was comfortable became increasingly difficult as the term neared its completion. Combine lack of sleep, being poked and prodded from the inside out by the baby (and damn doctors), having to pee all the time (and only a drop or two despite it feeling like you’re going to pee like a race horse) and other general malaise that accompanies the wonders of creating a child.
The baby arrived and I had the usual tired that you would expect from sleeping with one ear and eye open in case she should make any sound or movement during the night. Plus we must not forget the broken sleep because of the nighttime feedings. Now I was lucky in the fact that she started sleeping through the night fairly young and you heard no complaints from me let me tell you. I still wasn’t sleeping properly and although constantly tired, I didn’t think much of it. It was expected so not unusual in the least. My mood swings were still around and were not showing signs of improving any and even I found that highly annoying.
It was a few years ago now, but I believe my daughter was nearing her second birthday when I developed heart palpitations. They weren’t all the time at first but they quickly became a part of my every day life. My heart is not something I really want to chance messing around with, especially now with a young toddler.
So off I went to my family doctor. He ordered an echocardiogram (ECG) and various blood tests. I honestly have no idea what tests he ordered as he said he was simply covering all the bases. He did speak of my possibly having a prolapsed valve but he was quick to assure me that my life wouldn’t really change if that were to end up being the outcome. Freaked me out a little but figured I’d wait to find out the results before truly worrying.
Tests came back and my heart was normal (many would beg to differ but hey, who am I to argue with medical facts 😛 ). The test for diabetes was negative, my blood sugar levels were well within the norm. Hmmmm it seems my thyroid was the culprit and was completely out of whack. He proceeded to tell me that I’d have to be on pills for the rest of my life and that I’d need to come in for regular blood tests to monitor my levels. For the first year, he wanted to see me every three months so that we could adjust my levels accordingly.
And so started my journey. But it hasn’t ended there. In fact, it has only truly begun. The above is ALL the information he told me about my condition. That was it. He said the Synthroid would help me feel better. He never said feeling better means all my symptoms go away. I took feeling better to be exactly that, I would feel better than I have in quite some time but may not be back to where I was before I was hypothyroid.
Here’s the bitter truth. Although I felt better, I never truly lost any of my symptoms. My heart palpitations would come back if my levels were off, I was always tired but not to the point where I could happily stay in bed and watch the world go by like I was before. My moodiness was really the only thing that went and stayed gone.

Until about 4 years ago. They all came back plus some. I was ending a bad marriage and to say the break up was rough is an extreme understatement. During that time, there was the house renovation and I lost my job (I was the main breadwinner in the house). Stress was my breakfast, lunch and dinner. I felt like I was being pushed and kept at the edge of the cliff and just one more thing added to my plate would be enough to send me over into that deep black abyss.
Yes, with the over the top emotions and the bone deep tiredness came depression…all on top of the stress I was already experiencing. I thought I was losing my mind some days. I didn’t know which way to turn as I was being pulled everywhere. I was the one people came to for help, direction, or just to listen to their problems. I didn’t have anyone to do the same. Trudging on and pushing through it was my only option. Oh, did I mention looking for employment in a dying city wasn’t the most joyful experience either. That really helped with the depression of course.
I was gaining weight hand over fist. I wasn’t making the best choices food wise at that point as I was passed the point of actually caring. Unfortunately, my separation from my husband grew darker and more turbulent which added to my depression and stress. I also started having bouts of insomnia. Those bouts have turned into a regular thing where I have to be absolutely bone dead exhausted to actually sleep. Other than that, every night I fight to sleep and I always wake up somewhere between 3-4 o’clock in the morning. I fight again to get back to sleep and usually do…right before my alarm goes off.
I’m still fighting the weight, roller coaster ride of emotions, black abyss of depression etc., but I have gained some life altering insight: it’s all fixable.

Thanks to a couple of Facebook pages, it gave me enough hope to start digging and doing my own research to find out that many, if not all, of the symptoms or issues I am experiencing is due to my thyroid and/or wrong dosage/medication. I have an appointment next week and I’m armed with the tests I want done and why and also that I want my meds to be changed to NDT. I’m done with Synthroid. I’m done dealing with “Air Hunger” because of my medication. I’m done having to put up with my symptoms every day for the rest of my life. I’m done with being short changed by my family doctor.

I’m starting my journey forward to a better life and more importantly, a better, healthier me.

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I have 40 of these symptoms.

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

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