Tuesday, January 24, 2012

Find A Doctor in Canada

I never expected this task to be so time-consuming. I mean, this is Canada. We have tons of doctors. How could it possibly be difficult to find a doctor?
Well... I feel like this is the beginning of a fairy tale. A long, long time ago, in a land far, far, away...

When I was in Winnipeg, I found out the doctors switched from doctor offices to clinics. I'm sure the change helps more people and is less of a burden for the doctors. So when I moved here to Nova Scotia, I wasn't surprised to see there's a clinic as well as a few doctors offices.

The doctors offices were no longer taking new patients. OK. So I went to the clinic. I needed my prescriptions refilled. I thought it would be simple. I would bring in the bottles, and they would refill them. No such luck. The doctor only phoned in PART of my prescriptions because she wanted to see my blood tests. After reading the thyroid chat website, and knowing what others have gone through, I have to admit that I was scared. Still a little hopeful, but scared.

So blood tests done, I went in to see her and ask for the rest of my thyroid dose back. She turns to me and says she's never heard of Hashimoto's disease. (OMG!! Are you freekin kidding me?!?!?) My heart dropped to the floor. I could feel the panic rising. What was I going to do? What kind of doctor hasn't heard of Hashimoto's disease? I was in shock. I tried to calmly explain that Hashimoto's is indicative to periods of hyperthyroid TSH results as well as hypothyroid TSH results. She refused to even talk to me. All she said was I can have the tests redone in 4 months - absolutely no sooner than that - and would I like a flu shot. Sure. Hell, why not. And then she sent me on my way.


It's Been a Bit

I planned to post sooner, but I'm content in where I'm at right now. This day. Today. No, it's not perfect, but I'm content with the mild symptoms. These mild symptom days are so hard to get to and sometimes are gone before I notice I have them. It's sort of like having the hiccups. You notice when you have them, but don't notice when they leave. Suddenly they are gone and you have no idea how long ago they stopped. But you definitely notice when they start up again. So right now I'm enjoying the calm. The lack of symptoms. They aren't gone, of course, but they're much less than normal. It's a beautiful day.

So here's my dilemma. I feel pretty good, so do I catch up on all the things that need to be done? There's piles of laundry, the floors need to be washed, the house needs a good cleaning, and the pups need to be brushed and trimmed. Do I do all that and take the chance, hope beyond hope, that I'll be able to get out of bed tomorrow? I've also signed up for the Relay for Life in Blenheim on June 1st. I want to walk the full 12 hours - with standard breaks of course. (I'm not sure I know anyone who can go 12 hours without a washroom break.) But that walk-a-thon means training now. Today's training is only a 5km walk. So do I do all that and take the chance that for the next 7 to 14 days I may be stuck in bed? What if I relax today and I'm still stuck in bed for the next 10 days? Because there's a very good chance that may happen also. Hashimoto's has no boundaries. It takes what it wants.

Deep breath... How do I decide...

Thursday, January 12, 2012

Moving Back to Canada

Moving again. I made the decision it will be my last move. Meadowvale, Nova Scotia. A village so small they don't even bother putting it on the map. Between the move itself, because I was "out of country", Alaska having surgery for a cancerous lump, and building this house, my stress levels went way up. I've heard someone say that the two most stressful things we do in life are: building a home, and having a wedding/getting married. Very true. I found out just how much stress aggravates my Hashimoto's. I had so many sleepless nights. I think I was beginning to worry over every little thing. So I ended up going to the doctor to get something for my anxiety.
Have you read the side effects of an anti-anxiety medication?? Not good. Nope. But I had to have them. I was able to convince the doctor that I didn't need them every day, and a low dose would work just fine. *sigh* of relief.
So now it's time to find a doctor in Canada. I think they saw me coming and ran.

More Meds, Less Meds

Having Hashimoto's means getting my blood tested every 6-8 weeks until the right amount of thyroid replacement medication is taken. Now, keep in mind that Hashimotos disease is indicative to periods of hyper, hypo, and euthroid. So, if my blood test today shows I'm hyper, retesting next week may show I'm hypo. The problems come when I get a TSH value of 0.02 - hyper - then the doctor lowers my medication. Not fun. Less thyroid replacement means more symptoms. More exhaustion, more anxiety, more confusion, more depression. But still the doctors do it. Then, after 6 weeks in hell, my blood is tested again. My results are usually 2.2, maybe 3.2, which is hypo. That would mean I need an increase in my thyroid medication. NOW, if the doctors would just leave the dose alone, I think they would find that it all balances out. Adjusting to each dose takes a few weeks and the constant dosage change just becomes insufferable. More thyroid medication, less thyroid medication. The thyroid 'talks' to everything in the body. So the fluctuations in the thyroid medications has an enormous impact on the body as a whole.  This week the hormones are almost fine, next week the hormones are all on vacation, the following week they're at an all time high. If any man thought PMS was bad, they should see what it's like to add PMS to the constantly changing thyroid levels/pituitary functions/hormone levels/adrenal levels/serotonin levels/human hormone growth levels, etc. It's like a roller coaster inside the body.
And with all the changes, that thing is bound to jump the track one day.
So what I did, and I never, never, never recommend anyone do this - I started to regulate my own medication. I had so many different doses that I was able to pick and choose what I was going to take. I chose a mid-range dose out of what I had and started there. I didn't want to be taking more than I needed. My goal was to find one dose and only one dose that allowed me to feel ok while keeping me within what the doctors considered a good range. It wasn't easy and I don't suggest anyone ever do it. And anyone reading this - don't do what I did. I was lucky. I was taking my Medical Assistant degree and I had access to a great deal of information. I also never withheld the information from my doctor. EVER. I always told him what I was taking, how I felt, etc. So I was still under doctor supervision. I even phoned him when I had a question. We discussed at length the effects of too much thyroid replacement medication, different vitamins, different ways of eating, how much exercise to get and when. I'm certain he had to book me extra time for my office visits because he knew I wasn't going to just sit there and accept anything he said. I insisted he prove things to me. I made him tell me why he thought the way he did. And if there was something I was unsure of, I researched it with an open mind.
So after all that, at the end of 2010 I finally knew what dose I needed to be on.

Tuesday, January 10, 2012

OK, So I'm Diagnosed

So I have Hashimoto's Disease. Now what? Will there be different treatments? Will the doctor understand better? Will he be able to help me now? We know what's wrong, so can it be fixed? 
I kept reading article after article on Hashimoto's Disease, but I couldn't find anything. How can we (all people - the human race) have a disease that's just ignored? Why would that happen? How could that happen? 
So now I start to get angry. Why isn't anyone looking for more information? Why aren't they doing something about this disease? They have a test for it, so how do doctors just walk away from a patient after telling them they have this disease? The doctors can't offer hope. They can't offer treatments. Just a 'band aid' to get us through life. And this is not a good life. This is not what you could call "quality" life. Being in pain every single moment of being alive is not "quality" living. Having that pain dismissed by doctors because the doctor doesn't know what to do - that is not "quality" living. Do you think I'm angry? You're damn right I'm angry. How dare they do that to me?!? To all of us who have this disease?!? How dare they just pass us over as though we are not important!! How dare they dismiss our symptoms just because they don't know the answers!!
 
I know this disease doesn't show on my face. I know I don't usually look like I'm in pain. I know I try not to let anyone see when I'm having an 'episode'. That doesn't mean it's not there. And that doesn't mean I suffer any less.  

Saturday, January 07, 2012

Internet Search

It didn't actually take me very long to find a chat site online about thyroid diseases. I was lucky. The first one I joined had the best people. They shared their stories, their knowledge, their fears, hopes and dreams. It breaks my heart that site is no longer available today. It was their knowledge that I trusted and counted on. They explained how I should have the anti-TPO blood test to see if I had Hashimoto's disease. How anyone who is diagnosed hypothyroid should have that simple blood test done. (It's also called a TPO Ab test.) They also suggested a FNA (fine-needle aspiration). So I went to my regular doctor and asked for that blood test specifically. The doctor didn't object. I told him I just wanted to be sure I had hypothyroidism rather than Hashimoto's disease. The test took 4 days. During that time I just went on about my days as though I was sure of the results.
The day I was told I had Hashimoto's disease, I was in shock. I told the ladies on the chat site and they offered lots of support, but it didn't really sink in. Not at first. I'm not even sure when it hit me. I was in the middle of adapting to a new dose of thyroid meds and I still felt terrible. My symptoms were jumping up and down. Severe for a few days, then not too bad for a day or two. I was taking online classes and my energy was needed to get good grades. One night I was working on my Corporate Finance project when I just fell apart. I stopped what I was doing, dropped my pencil and just started to cry. I felt like someone had just given me a death sentence. In my mind, that's exactly what they did.

Pause 3

For those who don't know, Hashimoto's is a disease. It is not hypothyroidism. It is not curable. I named my blog Hashimoto's Unlimited because there is no limit to what this disease takes. It never goes away. Hypothyroidism is a condition that has a treatment. I have Hashimoto's disease. Every day I have to deal with symptoms. Some days are better than others. Some days I only have a little bit of pain. Some days I carry around my pain medication. Every day I live with the knowledge that people just aren't that interested in researching or looking for a cure. Hell, they're not even interested in looking for an actual treatment.
So you know what I do every day? I just go on. I can't complain to anyone because no one understands. I can't stay in bed and cry because it won't make things better. I can't post to Facebook about it every day because people just don't want to read about it. And they certainly don't want to read about it every single day. So imagine what it's like to live with - every. single. day. So I go on. We all do. Every person with this disease just suffers in silence. There's no other option. If we go to the doctor to complain, we get labeled as a hypochondriac. If we complain to friends, we lose our friends. So we all just go on.

Living in the U.S.A.

In 2007 we moved to Oklahoma City. The Air Force posted us once again, and I was very grateful to go. It wasn't as much of a change as I thought it would be. Living in Oklahoma City is pretty much like living in any other city. But so much happened in the 4 years we were there. Yes, the weather was much nicer there, very consistently warm and sunny, and the tornadoes were exciting every spring. But I was still having so many symptoms. I thought they would just go away once I was on thyroid medication. I was taking the meds just like my doctor in Winnipeg told me to. So why did I feel like a bag of poop every day? Why was I in pain? Why was I getting these 'episodes' of confusion, forgetfulness, dizziness? And mostly - WHY DIDN'T ANYONE CARE?

I felt so amazingly alone. No one in my family knew anything about hypothyroidism. People seemed to think it was no big deal. 'Take your pill and you'll be all better'. When??? Why was everyone so aloof about it? If I feel like this, why is it just 'nothing' to everyone? Is it me? How do I feel so horrible, while everyone else looks at me like I'm exaggerating or pretending? I know it's real, so why can't anyone see it?

I must admit I really liked the medical care I received in Oklahoma. Although it wasn't a complete breeze, it wasn't that bad either. I walked into a doctor's office around the corner to see the doctor. I made an appointment for the following week. That was simple. My first visit with him was great. He said he understood completely what I was going through, he increased my medication dosage, and then he referred me to an endocrinologist.

STILL, it just kept nagging me. If I'm doing what the doctors tell me to, how on earth do I feel so horrible? So I started searching the internet and I found a chat site for people with thyroid issues.

Wednesday, January 04, 2012

Winterpeg...I mean, Winnipeg

Amazing!! Winter in Winnipeg is, hands down, the worst winter experience of my life. It's so cold that 'cold' goes there to warm up. But the good thing about Winnipeg is the doctor I found there. He was great!! He was just like my doctor in British Columbia. He understood that I wouldn't come to see him for a cold or the flu. There had to be something serious before I would go in to see him. Well, I saw him for almost 3 years before I finally worked up the courage to ask him about my symptoms. And he listened. Right then he said 'sounds like your thyroid'. OMG!!  An answer?!?! I was flabbergasted!! He sent me for blood tests and the following week he told me - "Nancy, your TSH is 9.2, which means you are hypothyroid." Of course I had no idea what he was talking about. Hypothyroidism? What's that? And what's the treatment? He explained the best he could what being 'hypo' meant, and he said I had 2 options. One was medication, two was medication and surgery.
Well, little did I know, but I chose the wrong one. I chose not to have surgery. Every day I think about that decision. Every time I get my blood tests done, I think about that decision. Every time I get an adjustment in my medication, I think about that decision. Every single day, I think about that decision.

From Vancouver Island to Winnipeg

I enjoyed living on Vancouver Island. It is such a great place to live.  Especially if you like eating healthy and being active. We BBQ'd almost every day. Bought fresh produce from the farmers' markets. We went hiking (turns out I'm not a big fan of hiking), swimming, bicycling, socializing, etc. I had 37 rose bushes around the house that I insisted on checking, cutting, and weeding regularly, along with several other plants and trees. I also put dog fur on the rose bushes after each rain to keep the deer away. I played darts in 2 separate leagues and I worked for a Real Estate Appraisal company. (Fascinating work.) I did my best to follow my doctor's suggestions.  Unfortunately, it didn't seem like they were working, and that Christmas we found out the Air Force was posting us to Winnipeg in June 2003.    

First Doctor Visit

Sure, I was going to see a doctor. Since I still wasn't sure how to explain what I was dealing with, explaining things was extremely difficult.  I started telling my doctor how tired I was.  How I was gaining weight just looking at someone else eating.  How I forgot things so easily. How I felt moody. And how emotionally drained I felt for no reason at all.  Of course, you know all these things are easily explained.  I was 30 years old.  I guess the body just deteriorates at 30?  I guess when we hit 30 we are now "getting older" and perhaps we "just can't do things like we use to be able to".  Yikes!!  I was thinking - if this is 30, what is going to happen at 40?? Or 50???  How do people live past 90??  Perhaps Alzheimer's is just the natural progression of the brain?  Because I felt like it was already starting to hit me.

Now, there's no way I'm going to blame my doctor for not catching Hashimoto's Disease. He's a great doctor. He understood how I didn't want medication if there was a way around it.  Jogging to get rid of a cold, a regular decongestant for the ringing in my ears, the extreme minimum of asthma medication to control my asthma symptoms, etc.  There's one thing neither of us knew.  Thyroid disease runs in the family.  Why would he look for something that even I didn't know might be there?

Instead, I just took his suggestions to try and sleep better at night, remove all processed foods from my diet, and try to get a little more exercise.  And most of all, he said 'don't sweat the small stuff'.  *sigh*