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Saturday, April 5, 2014

For those of you who just don't get it...

The last time my friend was in town staying at her mother's, I went there before we went to do some shopping & shenanigans.  Her mom's like a 2nd mom to me, always making me eat and making sure I'm doing well.  She knows about my thyroidectomy and my struggle to get better.  This was right after I learned my TSH had shot up to 9, and though I'm still way better than I was in the past, immediately after being asked how I was doing, I responded, "Not too well," explaining how my level just spiked and how I have no clue why.

The conversation then took an argumentative turn.  She told me I was relying too much on my doctors & how I needed to stop all my medication and then she kept trying to push a progesterone cream on me because it was "all natural" and she "knew what I was going through."  Mind you she thinks I'm going through early menopause (thyroid disease vs. menopause) and has never been treated for a thyroid condition.  I explained how yes, my sex hormone levels could have something to do with my condition, but the hot flashes I was having after my surgery had since gone away, many months ago, and my periods are back on track.  I also explained how I made my new doctor check those hormone levels and they came back normal.  The last thing I need to do is take a supplement and throw the normal levels off causing more problems for me.  I told her how, due to my TSH being at 9, that made me understand why I was currently feeling like crap, and how I upped my dose of thyroid medication and we're also now looking into my adrenal gland function.  I tried to tell her how I cannot just stop taking my thyroid medication, how it could kill me if I did, and she just wouldn't accept it.

I broke down in tears.

I've had a few people ask me about stopping my medication to see if that would help, or tell me that maybe once I feel better I should stop taking them and I always try and explain to them how I can't.  Some, I think, get it.  Some, I think, act like they get it and then just drop the subject because they probably think I will just not listen to what they are trying to say anyway.  Then there are those that try and argue with me.  Not even to stop taking the medication permanently, but they cannot understand why I will not even try temporarily.  I started taking Armour back in October 2013 and, though I stated before how I am feeling better overall, my levels went from low, to normal, to low, to high! I still haven't even found a good dosing to keep me level yet!

So, the other day, Mary Shomon had posted on her Facebook page something that I feel EVERYONE needs to read.  If you just don't get it, maybe this will help.

"Type 1 Diabetics (an autoimmune disease) REQUIRE insulin to survive. Lack of insulin - a crucial hormone - will kill them. So far, there's no "natural" non-prescription source of insulin, no herbs, no vitamins, or supplements that can provide them with the insulin their bodies requires to survive. They require prescription insulin to live.

Human beings MUST HAVE THYROID HORMONE TO SURVIVE. Over time, a lack of thyroid hormone will eventually be fatal. There is no trusted "natural" non-prescription source of thyroid hormone, and no herbs, no vitamins, or supplements that provide the actual thyroid hormone our bodies require to survive.

While in a subset of cases, borderline thyroid problems can be caused by iodine deficiency/excess, goitrogenic foods, gluten intolerance, inflammatory diet, etc. -- most people who are hypothyroid are already looking at damage to the gland, which means the gland is unlikely to produce enough thyroid hormone, and may not be "fixable" or able to improve its hormone output. And for those whose gland is surgically removed or radiated (RAI) - they have little to no thyroid function at all, meaning no way to produce thyroid hormone.

I'm sharing this, because I'm concerned when I see people say that most of us shouldn't take thyroid meds, or "I don't need them, no big deal" etc.

If you read a success story -- or see marketing pitches -- about "I'm not taking any thyroid meds and I'm doing fine by doing x, y, z" or taking this or that supplement, that's wonderful for those folks, and there's no doubt that for a subset of people, food/diet/supplements may be able to put their thyroid into a normal range and/or resolve their symptoms.

But if you have had thyroidectomy/surgery to remove the gland, if you have long-standing hashimoto's with atrophy or destruction of the thyroid gland, if you have congenital hypothyroidism, if your gland has shrunk, etc. then all the diet/nutrition/supplements in the world are not going to make a missing or entirely dead organ to grow back or start working again. Those things can help with residual symptoms, definitely, and be the difference between feeling so-so and feeling great.

There is a profound difference between someone with mild borderline hypothyroidism and a TSH of 6 deciding not to take meds, and someone who has no thyroid going off meds, which can be fatal. I also want to caution you that in 20 years, I have heard from dozens of thyroid patients who said they went off their prescribed meds because they didn't want to take them, or they wanted to do it "naturally" and thought they were doing well, until they started to notice that they had gained weight, cholesterol shot through the roof, they didn't realize that miscarriages were connected, etc.

In one case, a woman who had no thyroid decided she didn't want to take her meds -- and it ended up where she couldn't drive, couldn't work, slept 20 hours a day, was so puffy she could barely move, her heart rate had dropped to about 40 beats per minute, and she was so addled she didn't even realize that she headed into a myxedema coma, and was slowly dying...she just laid in bed sleeping most of the time. Thankfully a friend recognized what was going on -- she hadn't taken her meds in a year at that point -- and if the friend didn't haul her deliberately into the ER as an emergency, where they found she had a TSH over 400, they said she was about 2 weeks away from death from organ shutdown.

Taking thyroid hormone is NOT like taking a Tylenol.... it is replacing a crucial hormone that we require to live. I just want to make sure that folks understand that this isn't a do-it-yourself casual health issue that's no biggie -- it can have some serious repercussions, it can cause loss of pregnancies, people have been wrongly institutionalized at mental hospitals, and it can even be fatal if we don't get the right treatment."

If you know someone with an auto-immune disease, unless we ask you, please do not give us advice.  We will be more than happy to answer any questions you have to the best of our ability.  We may not always know the answers as many of us still have many of our own unanswered questions and we are still learning ourselves.  The best thing you can do is listen, educate yourselves, try to understand, and support us!

~

You can follow Mary through the links below!
Facebook: https://www.facebook.com/thyroidsupport/
Twitter: http://twitter.com/ThyroidMary
http://www.thyroidcoaching.com/
http://www.thyroid-info.com/
http://thyroid.about.com/

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