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T is for Thyroid-Hypothyroid, to be Exact

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When I first started getting sick, close to about 8 or 9 years ago now, maybe as much as 10 years ago–man, has it really been that long? Wow. Okay, let me start over. I had always been quite healthy, most of my life. I never got sick as a kid, rarely even had the sniffles or a cold. I never missed a single day of school in all the years I went to school as a child. I had, at one time before I lost them in one of my many moves over the years, a perfect attendance certificate for every year I was in school. Pretty impressive, eh?

Well, not really, since it was mostly because I’d rather be at school than be home… but at the same time, I really rarely ever got sick. Except for accidents–of which I had plenty (I seemed to like to break bones and bust my head open as a child–not on purpose, mind you, but yeah)–my parents never even took me to the doctor, really. No need.

When I was in my early 30s, my body started changing. It was little things, at first, subtle enough that it was easy enough to blow it off to just getting a little older. Then I started to have muscle weakness, spasms in my back, and pain in my left shoulder. Then facial twitches. I blew most of it off, popped some Tylenol or Ibuprofen, move on with life. I was a single mom, with two kids, bills to pay, a mortgage, a car payment, you know the drill–you do what ya gotta do.

I didn’t go to the doctor right away. I didn’t have insurance. Back then, you only went to the doctor if it was something big, and little aches and pains and issues you just worked through. That’s what I did–pushed through them. The one big thing that did get me to the doctor–well, that’s not entirely true… it wasn’t what got me to the doctor, but rather, I was going in for a routine checkup that my mother paid for and while I was there I complained about this–was that I had started to gain weight, and nothing, and I do mean nothing I did was getting it off.

I had recently lost weight, and I was looking really good and feeling really good about myself, but try as I might, I couldn’t lose this weight this time, and it crept up and up… no matter how much I moved, exercised, decreased my diet, didn’t matter–weight kept coming on. Later on, I complained to my doctor about it.

He told me I was getting on up into middle age, slowing down, metabolism changes, happens to all woman, hormones change, don’t worry about, just eat less, move more–and I tried. I swear I tried, but the weight kept coming on, and it was packing on FAST and there was nothing that was working.

Well, I felt so bad about it, so shamed by it, I was afraid to bring it up again. I had wanted to cry when the doc told me that it was normal, and basically made me feel like he was saying I was just old, fat and lazy. I was anything but! I was quite active, constantly running around with the kids, playing basketball in my driveway, riding bikes, walking in the evenings, but my weight kept going up and up!

My feet started to swell at nights. My hands would sometimes get puffy. I’d pee all night long when I should have been sleeping, only to wake up and the swelling would start again. Then, one day, I nicked my leg against the side of the car while getting groceries out of the back seat–and my life has never been the same.

Sure, there were a lot of other things that happened that led me to where I am today, but in the beginning, the one single event I can pinpoint where my life went downhill rapidly was when I whacked my leg against the car door.

I ended up with cellulitis, which is a skin infection, that necrotized on my leg, chunks of skin fell off, it was a raw, bloody, seeping, open wound, and it hurt–badly–for a long time before I finally went to the ER. They gave me meds, sent me on my way. Three more trips to the ER finally referred me to a doctor, and more money shelled out, they tried to treat it at home, and then I ended up hospitalized in 2007 for a week. Three more recurrences of the cellulitis before it finally went away.

Only, while in the hospital, they diagnosed me with hypothyroidism. They put me on .25mcgs of levothyroxin. Because the leg was what was important, no one even talked to me about the hypothryoidism, so when the prescription ran out, I stopped taking it, same as I would have with the antibiotics, etc. I had no clue what it was for or why they had given it to me. So it wasn’t until almost a year later that my new doctor, well, really, he was a PA, actually tested my thyroid again and he put me on 1.25 of levothyroxin, then scheduled me to come back for a retest. One thing leads to another, and I move to the Galveston/Houston area of Texas, and by now, it’s nearly two years since my original diagnosis. I go to a new PA here, and I tell her about the weight problems, and she nods like she doesn’t believe me, but she makes a note, and moves on, says she’ll test my thyroid.

My TSH, while on 1.25mcgs of levothyroxin was 18.8. It should be, for the most part, around 2. That was way high. High enough she called me back to the office and redid my dose. They increased me finally to 2.75mcgs levothyroxin, and later included Cytomel too (T3, while levo is synthetic T4). But all the while, my weight keeps going up, my legs keep swelling, my hands and face are still puffy. It took months to get my TSH down. Even longer to get the T3 and T4 to show in normal ranges on the lab tests, and then my doc tells me I should be all better now.

Uh. huh?

I didn’t feel any better. If anything, I felt worse. Now, my heart was racing, palpatations. I had no clue what was happening to me, but other things had started to go bad now too.

Eventually, I found Stop the Thyroid Madness, and I bought the book and I read and researched and read some more. I bought another book by another doctor called The Thyroid Solution: A Revolutionary Mind-Body Program for Regaining Your Emotional and Physical Health. I researched endlessly online and learned I needed to take some matters into my own hands. I tried to get my doctor to switch me to Armour Thyroid, or to dessicated thyroid, and she wouldn’t. In fact, I didn’t get a doctor to change me to that until just this past year–boy, what a difference it makes. I think I’m still low on it, but we’re slowly working up to the therapeutic levels. I’m sort of having to educate him as we go along, because he’s never prescribed natural thyroid, so he’s researching and reading as we go.

Do I think the thyroid was my only problem? No, probably not. But I do think it was what started all this that triggered most of the other problems. The muscle twitches and pain were likely from the scoliosis. The inflammation, swelling, fluid retention and problems with my kidneys were all related and likely because of or at least exacerbated by the thyroid being so under treated and un-treated for so long. Eventually, the blood clots (DVT) and the pulmonary embolisms were caused secondary to the thyroid issues, and had I not been so sick from that, they might never have happened. And the PEs of course, caused the heart damage, which has caused the congestive heart failure. Basically, one thing leads to another to another and to another, until it was hard to know for certain which came first, what caused what, but I do believe it’s all inter-related.

I suppose what pisses me off the most is, if just one doctor had stopped, breathed a moment, and looked at my chart, treated me like a human being who was in need of more than the standard vitals and blood work, if just one of them had listened to me when I came to them scared and frustrated, and they had taken the time to understand what I was trying to tell them–ALL OF THIS I’M GOING THROUGH NOW COULD HAVE BEEN PREVENTED!

And THAT is where I get angry. THAT is where, when I start to think that direction, I get so sad and so pissed I can’t even think.

But I always end up at some point shrugging and saying, “What’s done is done. I can’t do anything about it now.”

I wish I had some way to prove it. Sometimes, I want to make every doctor who didn’t listen to me pay for what I’m going through. My life… was sacrificed so they could add 15 minutes to their schedule and shove more patients in during an exam day.

I even had a visit with a doc one time, when the nurse, you know, how they ask all those questions at the beginning of the visit about what your problems are? Well, one time, my doctor came into the room and said, “Well, I read your chart, and I gotta tell you, I’m a little overwhelmed. I thought we were just going to talk about such and such today…” I don’t even remember what it was–I just remember being angry, because they ASKED me what was wrong and I TOLD them, and they chose to ignore me.

If SHE was overwhelmed, can you imagine what I must have felt like?

And sometimes I get mad at myself too for not insisting they listen, for not going to a different doctor… but I did go to different doctors, and I got mostly the same thing everywhere I went, except for one doctor–he was different. I basically accused me of being a liar and a drug addict–because I wanted prednisone for my adrenal insufficiency and he said I was too fat to have adrenal insufficiency.

It’s defeating and deflating and miserable going to doctor after doctor and being told there’s nothing wrong.

And then ending up in the hospital on a heart monitor, near death, with a team of at least 20 people hovering over you and poking you and then spending a week in the cardiac unit of the hospital because you almost died.

Yeah–nothing at all was wrong with me, though… time and time again, they…yeah–

Okay, that’s enough of that. Most of the time, I’m past this–but it’s been a particularly hard couple of days, so I guess I’m a little weak right now.

My son, who is only 18, has already tested positive for hypothyroidism as well. We STARTED him on Armour Thyroid, and my Buffy has switched to Armour and has been able to get off two other medications she was taking because of it. It makes a difference.

What’s so sad is, hypothyroidism is super easy and super cheap to test for. The TSH test, which can be used to help screen for a problem, is under 10 bucks. There’s no reason people can’t have it included in a regular checkup blood panel for any woman over the age of 25 and for any man who is having weight loss issues or weight gain issues or other symptoms (women are more likely to get hypothyroid, but not exclusively so). The TSH shouldn’t be used to manage treatment, but it can definitely help diagnose or confirm diagnosis.

I can’t help but wonder how differently things would have turned out if anyone had listened to me and tested for this earlier… so I wrote this article a while back. If you have any of these symptoms, please consider going to see your doctor: depression that isn’t responding to medication, dry skin, weight gain or inability to lose weight while trying to do so, tiredness, lack of energy, muscle aches and pains, losing hair and eyebrows, sleep disturbances, and much more. Read the article to learn more. If you can’t get your doctor to run the test, you can actually order it yourself in most states. Read the link above for the Stop the Thyroid Madness website too.

I’m not saying that hypothyroid disease caused all my problems. It most certainly didn’t CAUSE them all, but I do believe that poor treatment and control of my hypothyroidism by multiple doctors caused my health to degrade to the point where other conditions and problems were exacerbated, leading to where I am now. You do not want to be here. Trust me on that one.

Love and stuff,

Michy

PS: If you have questions, leave ’em in the comments. I will try my best to answer them, or point you in the right direction for an answer if I can’t.

 

 

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