illness

What You Need to Know: Your Hypothyroid is Probably Hashimoto’s

I spent today baking cookies for a Christmas party tomorrow.  It was a lovely day filled with falling snow, Christmas music, and wonderful tastes and smells.  

Tonight my whole house smells like sugar cookies.

After 3 batches of cookies, I started to notice the inevitable: pain and stiffness everywhere.  

I had even tried to take it easy, having teenagers lift heavy things, mix frosting by hand, and lean down low so that I didn’t have to exert myself any more than necessary.  

But it only helps so much.

A friend reminded me to be thankful that I was able to do even this much, for there was a time not long ago when I couldn’t walk or drive.

I took some supplements to help with the inflammation,  forced myself to clean the kitchen in an effort to avoid any possible panic attacks over the mess tomorrow,  and settled myself down on the soft, fluffy couch to write my blog post.

I had intended to continue discussing legalism, but my brain just wouldn’t cooperate.

Pain is distracting.

I ended up mindlessly watching police procedural TV shows and Googling random things I read about on Facebook.

That’s when I stumbled upon a post about autoimmunity.  It was actually about Parkinson’s disease, but I recognized one of the symptoms in the post: muscle tremors and decided to see if it could also be part of the Hashimoto’s.  

It is.

Everything is, it seems.

Or at least that’s how it feels on my bad days.  

Today was actually a good day,  though.  I’m holding tight to today’s happy memories.  

Pain tonight can’t rob today of joy: I won’t let it.  

When I Googled the tremors and Hashimoto’s, then I began thinking about all the symptoms —over 300!— and how those symptoms are ignored by most doctors and patients are told they just have to live with them.


“The most common symptoms (of Hashimoto’s) include: fatigue, muscle pain, weight gain, depression, cognitive difficulties, cold intolerance, leg swelling, constipation, dry skin. If left untreated,  goiter – a swollen thyroid gland, appears. If left untreated for an extended period, cardiomyopathy (swelling of the heart muscle), pleural (lung) and pericardial (heart) effusion (fluid), coma and other dangerous conditions develop.”

From here


Often times, Hashimoto’s sufferers don’t even get a diagnosis,  because, although researchers believe that the majority of hypothyroidism is actually Hashimoto’s,  doctors refuse to treat Hashimoto’s any differently than a simple thyroid problem.  

It’s not a thyroid problem. It’s an immune problem.

They’re certain everything can be fixed by a single pill.

Given the severity of untreated hypothyroidism: heart failure, lung failure,  adrenal failure, and even coma and death, you would think that the medical community would take it more seriously.  

No.

Not really.

When I was sleeping 18-20 hours a day and my children couldn’t wake me, my doctor just upped the dose of the medication, refusing to test anything other than TSH and refusing to consider any other medications except the one he prefered to use.  

I was on such a high dose of medication that I was taking three other medications just to cover the symptoms of the high dose.

And the medication wasn’t  fixing my thyroid.

My most notable symptom from high thyroid hormone was Restless Leg Syndrome  which was the worst the sleep center had ever seen –they threatened to duct tape the sensors on my legs to keep me from shaking and kicking them off. The symptoms went away –completely– when I went off the doctor’s prefered 

thyroid medication.  

If you have now –ever have had low thyroid– I implore you, I plead with you to understand that you almost certainly have Hashimoto’s and the medical community is clueless.  There aren’t adequate tests for it. The blood test is not very accurate.

You need to go by symptoms.

Familiarized yourself with the symptoms of Hashimoto’s.  Watch for those symptoms.  If you have them, don’t stop looking until you get adequate care.

Even if that means a naturopathic doctor.

The only medication  I can use is from a compounding pharmacy.  Conventional medical doctors refuse to prescribe it. Too much hassle. 

Every other thyroid medication has made me very sick. My reactions have ranged from choking on my own stomach acid to vomiting to the above mentioned Restless Leg Syndrome.

Many, many Hashimoto’s patients resort to alternative medicine, because the alternative doctors will actually listen and help.

Nothing is more frustrating than going to a doctor for help and having them be totally unhelpful –or worse yet them threatening to turn you into CPS because you’re not up to par in caring for your house and children.  

That actually happened to me.

I knew I was not doing well: that’s why I needed a doctor!

Be your own advocate, and don’t give up until you get the help you need.

Don’t put up with care like that which came from my doctors who diagnosed me with Hashimoto’s, didn’t bother to tell me, ignored my symptoms, and probably would have killed me by neglect if I hadn’t decided I’d had enough and fired them.  

I’m know hindsight is 20/20, but sometimes, when I’m laying here in pain, I can’t help but wonder where I would be if I had just acted sooner. I can’t even imagine where I’d be if I was stil l receiving conventional medical care. 

I’m scheduled for an ultrasound on my thyroid next week. Growths on the thyroid are another symptom of going without proper treatment. I knew this was a possibility, but it still saddens me that every month, it seems, we tackle one health complication just to have another two or three take its place.

I’m grateful for the progress, but it can be discouraging and overwhelming.  

It keeps me humble and focused on what’s actually important.

Remember: don’t let yourself get as sick as I am.

Don’t wait to take care of yourself.  

Blessings,

Sarah Forbes

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