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?

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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.

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