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A Thy-pology

Post Published: 05 February 2010
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Category: Dear Thyroid Letters
This post currently has 13 responses. Leave a comment

Written by Kay – Thyroid-What-Isn’t-The-Issue

Dear Thyroid;

Dang, but I’ve said some nasty things about you in the last 3 years!,   Things I shouldn’t have said about my worst enemy, let alone a part of my own body. I’ve blamed you for everything: my bad moods, my lack of libido, my inability to lose weight regardless of diet or exercise, everything!

Now, it’s not to say that some of these things aren’t your fault. Who could blame a girl for seeing all her symptoms match up perfectly with a list of symptoms of your failure? The dry hair, the dry skin, the weight gain around my middle, the inability to finish sentences or finding a random word to finish the sentence, and the short term memory of a mayfly.   Even my,  doctors thought it was,  all your fault, how could I tell that they were wrong?,   Taking drugs to replace your function made me feel better, some of the time, but then you’d appear to fail again, and we’d need to adjust, fail and adjust, fail and adjust.

I know I’m almost 40, I’m approaching that dreaded “middle age” and all the hype around it makes me just want to go medieval on the world at times. I could blame you for a lot of the crap making that worse as well, and I wouldn’t be entirely wrong there either.   “This just happens sometimes to women your age… “Some women just have this problem… “You’re not sick, you’re just not well…

I know, now, that I had crap doctors. Ones that were treating the number and not the patient.  ,  Ones that were willing to blame the patient her age, her husband (yeah, what the hell?), her mind — for her own problems. Ones that saw only individual symptoms and their treatment, in an astounding exhibition of professional tunnel vision.

But, I’m sorry. I apologize. It’s not all your fault, and it’s even possible that you were just dealing in your own way with a,  shitstorm,  caused by other parts of my body. It doesn’t help that those parts of the body are also controlled by the little nubbin of brain that also controls you. Might you have just been caught in the crossfire? I’ve worked my ass off this year, pushing and pushing, to get doctors to answer my questions, to get them to be curious, and to give me answers that make sense.

You see,  waaaaay,  down at the other end of the body are these things called ovaries.   You and they don’t talk directly to each other, but you have a lot to do with one another in a round-about, body metabolism kind of way.   They make estrogen and progesterone, which affects huge parts of my,  body,  you make thyroid hormones, which affect huge parts of my body.   See where there could be conflict and confusion?,   Will you forgive me for thinking it was,  all your,  fault?

Now, please understand Dear Thyroid, my ovaries are particularly misbehaved and produce large obnoxious cysts.   And when they decide to go away, they don’t do it quietly.  Oh, no!,   They explode in an estrogen and progesterone bomb, leaving it to the rest of the body to deal with the consequences of their bad attitude. Hair loss!,   Weight gain!,   PMS whole cycle round! This is a toxic clean-up operation that can last months on end.   Without fail, they just start up again, producing more and bigger cysts, which even un-exploded are not happy residents and cause all kinds of problems in the neighborhood.

And in the middle, Dear Thyroid, between you and the ovaries are these things called a Liver and an Intestine.   These guys are supposed to do the,  clean up,  of the mess from those danged ovaries, and they been doing a truly shoddy job.

Oh, and I’m sorry about the whole vitamin D thing. I was as completely shocked by that as you are. I can tell now that bits I blamed on you, in the depths of the winter, and even in the middle of summer, were likely not your fault at all!,   I thought I ate enough dairy, and drank enough milk, but I was nowhere near what I required there.   I blamed my winter sluggishness on the clouds and on you, Dear Thyroid, and have always needed a medication adjustment in the spring.

So, I want to apologize to you, Dear Thyroid. I’m working with new doctors who actually listen and work the whole problem, not just TSH levels. I’ve had CT scans, ultrasounds, and more vials of blood drawn than I ever imagined.   I’ve talked to,  gynocologists, endocrinologists, immunologists, and truly great general practitioners. I think we’re getting a handle on the whole body.   The infections may be under control for the moment. The where-the-heck-did-this-come-from weight has gone away again (thank you vitamin D!). I actually have energy and am looking forward to starting to work out again.   I’m not dragging myself around anymore, and,  none of the changes have directly involved you.

I promise to work harder on changing my diet so that yeast and bacteria don’t get out of control, on eating more protein so I have energy throughout the day, on eating the things that I should be and getting the exercise that I need.   I also promise to work hard with my acupuncturist and my new doctors to make sure I stay on track. And to keep pestering them so that they stay on track, too.

Dear Thyroid, I’m actually looking forward to my next thyroid function test so that you can show me how excellently you’re doing!

p.s. Hey ovaries? Yeah, you! You’re on warning. Quit screwing things up.  I’ve got a life to live.

Bio:  Kay is a former academic, trained in anatomy and physiology, which is why she’s been so ticked by doctors giving her advice and treatment that made no earthly sense (sure! I’ll take those antibiotics once a week, ad infinitum, so that not only can I have bacterial infections for the rest of my life, they can be,  antibiotic resistant!),   She’s now a SAHM, makes things with sticks, string, and fabric, and is constantly in search of a vocation.

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13 Responses to “A Thy-pology”

  1. Elaine says:

    Great letter from a different point of view.

  2. Robin says:

    I did not know that about ovarian cysts. I knew they exploded and left a mess of adhesions, but no clue about the hormone bomb they detonated. Holy Moses….

  3. Kay says:

    Robin,
    Yeah, my doctors never mentioned it either. They always talk about how the cysts will “reabsorb” or “disappear”. With small cysts that may be the case, but with large ones there’s no chance. They burst. And whether they’re going to be filled with hormones depends on what type of cyst they are, but it’s the type mine are.
    It’s the type of thing that you think gynocologists or endocrinologists would pass along to their patients. Or that they would mention that some of the symptoms may be related to high estrogen or high progesterone levels.

  4. Dear Thyroid says:

    Right, Elaine?

    Felt the same way!

  5. Dear Thyroid says:

    Robin;

    I knew/know that with GD you’re susceptible to endometriosis, but I didn’t know about ovarian cysts. I was so happy that Kay wrote about that.

    xo

  6. Dear Thyroid says:

    Kay;

    1) Beautiful letter – so honest.
    2) Shocked, but not really that it wasn’t mentioned to you. We seem to learn about so many symptoms after the fact, post diagnosis and after we’ve done our due diligence. All of which are criminal at best, IMO.

    xo

  7. Joanna says:

    Great post, Kay. Thanks for sharing with us.

  8. jeannie says:

    Great post Kay, thank you. There are so many aspects to this condition, it’e good to get the low down on whayt could be oausing problems for ud Thyrodians,

  9. Stacerella says:

    Kay, you’re not alone. I am also being treated for PCOS (poly cystic ovarian syndrome).

    I love to joke that my lady junk are retarded, but in fact they are more deaf, dumb and blind. My Endo explained PCOS to me this way: every month the brain puts out a memo for the ovaries to release the hounds (eggs), out into the wild, but the ovaries aren’t, or can’t, able to comply.

    I don’t have the explosions; mine absorb or disappear when they do show up. I have had invasive, humiliating vag ultrasounds that aren’t painful but aren’t fruitful either several times, lots of blood loss when I do have periods (think a mass murder in my panties) and I have all the other lovely byproduct effects you suffer.

    Where we differ is that my doctors tag teamed me and started treating me for five years as if I had presented before they told me. I still haven’t really presented but that’s because I’ve had that treatment all along by my GP and endo, who both listen to me as well as follow the numbers so I don’t have to. I love my doctors. Those broads ROCK. I’m so sorry you didn’t get help earlier, but I’m thrilled you have it now.

    I did want to state that PCOS can be worsened by hypothyroidism, and vice versa. There is a very direct connection there. And the risks PCOS come with are more numerous than simply having a thyroid disease. We are in a risk group for infertility, Type II diabetes, heart disease, ovarian cancer, etc. or in some cases, a combo of a few. All this is in addition to whatever our thyroid develops into, if anything at all beyond the grey area. A lot of this can add up to some very serious, very life threatening medical conditions.

    This is serious shit. I encourage every woman to get her junk checked out if you have wonky periods, missed periods, heavy mensies (especially if you have heavy mensies!), etc.

    There are lots of other issues that could be going on behind the scenes other than just your thyroid being out of whack. I read lists of things people blame on their thyroid and wonder how many of them are going untreated for PCOS. I bet a good chunk of you are. Talk it over with your doctor. Bring it up as a serious consideration to be investigated.

  10. Lolly says:

    Truly great letter Kay. I sympathize with you with the lack of explanation and or treatments form your numerous ologist but it’s great you got a handle on things now.

    I had Endometriosis bad in my puberty and didn’t know back then it is possibly associated with the auto immune system. I no longer have any of my lady bits and have to have still another replacement along with the thyroid ones. I ask myself why are my hormones up the creek without a paddle.Do I have any functioning hormones left to control my bodily functions. It’s not easy getting the balance right, so when I was first struck down with Graves Disease and GO I put it down to lack of hormones and had my HRT increased to double because of the similar symptoms how wrong could they be.

    We live and learn but most of all now I question everything and don’t take doctors words for it. I want to see results infront of me.I want them to listen to my symptoms.

    I hope you can get your PCOS under control and thyroid balanced out.

    Great letter.

    Lolly

  11. Kay says:

    Thanks Stacerella!

    I’m sorry that you’ve been going through the whole PCOS rollercoaster – I’ve known others on that boat and they still don’t have all their answers even with terrific doctors.

    The one thing that I *have* had cleared up in the 6 months since I switched doctors around is that what my ovaries do is *not* PCOS. Most often in PCOS the ovaries end up looking like a bunch of grapes – little cysts everywhere, that then don’t pop or resorb with ovulation. Sometimes one or more of those can get bigger over time, but even more tiny cysts form all the time. At least that’s my understanding.

    I, apparently, only generate 1-2 cysts a month (which is fairly normal). Post-ovulation, whichever one released the egg is supposed to hang out for a bit, generating hormones (corpus luteum) and if I don’t get pregnant then it’s supposed to reabsorb. What seems to be wonked with me is that on a regular basis one of these luteum cysts won’t reabsorb. It somehow seals itself again, and with every ovulation it gets bigger and bigger, still generating it’s hormones. Periods are regular and predictable, but at some point, in some ovulation, one of the cysts will decide to burst — think of it as suddenly taking your normal levels of hormones and bumping them up 2 or 3 times.

    High cholesterol is often associated with PCOS, as are pre-diabetic tendencies and high blood pressure. I’ve none of those.

    No doctor has yet been able to explain to me why my ovaries do this, or how it can be solved. I’ve talked to another woman who has very similar ovarian problems – and the only common denominator is that she also has an auto-immune condition, in her case Rheumatoid Arthritis.

    The only solution seems to be surgery – either to take out the cysts, or to remove one or both of the ovaries. Removing the cysts only works for a couple of years, then there’s more and bigger and more persistent. Taking out both ovaries is really not an option – I can’t take artifical hormones and I’m too young for menopause. Hopefully taking out one will help, but which one? They both misbehave!

    Sorry for the brain dump, this is just still the part of this whole thing that I’m dealing with, with scheduled and cancelled surgeries, and probably another to come.

  12. Kay says:

    Oh, Lolly, I really hope you and you doctors can get that figured out!

    From my responses to BCP both before and after pregnancy I’ve discovered that there is *no* way for me to take HRT. Not unless someone were to lock me in a ward somewhere, and that hardly seems worth it.

    The problem is that my reaction to my own hormone levels are so strong that adding any on top of it (to make my body not ovulate) is horrid. That’s what all my previous doctors wanted to do to make these cysts stop. I realize that I tied their hands in treatment, but I and my family cannot be guinea pigs for 3-6 months at a time as we try different BCPs.

    The thyroid problem was first diagnosed 1 year after my first cystectomy – but I’d been showing symptoms for the previous 7-8 months. This was complicated by the fact that in the week leading up to the surgery I had 2 cysts burst, so I was dealing with 2 hormone bomb cleanups at the same time.

    That’s why I think that the initial major thyroid flare-up was reacting to the other hormones. Looking back, and realizing now what the symptoms of a hormone bomb are (weight gain only around my middle, horrible PMS, hair falling out in handfuls) combined with the Hashimoto’s symptoms (dry skin and hair, zero energy, blood pressure so low at ovulation and start of my period that I can’t get out of bed without blacking out) I’ve gone through these cycles all my life. I never thought it was anything abnormal until it got extreme after my pregnancy.

    Now that my body seems happy with the level of synthroid I take, all of these other problems have come to the fore.

    I mostly wanted to put this letter out there for all those women who find out that their “number” is in the range it should be on thyroid and yet their bodies are still doing things they shouldn’t — here’s another thing to look for.

  13. Stacerella says:

    Not that I want to doubt my doctors at all, but I don’t feel I have all of the classic symptoms of PCOS either. I trust that whatever does ail me is being treated by the same course of action as if I did have PCOS, though. I trust my doctors to see the bigger picture even when I’m grasping at puzzle pieces that aren’t from the same picture at times. I really don’t want to have PCOS, but I know something similar is going on with me, so I stick with the treatment to be on the safe side.

    “High cholesterol is often associated with PCOS, as are pre-diabetic tendencies and high blood pressure. I’ve none of those.”

    I have all of these, and yet, I’m told my ovaries are round and smooth – nothing amiss down there, I was told. The doctors agree that I miss periods, but when I do have one, eggs do get sent out only reabsorb before they get past the bend in the tubes. I’m never going to get pregnant the normal way, and that’s fine with me. I’m not a mommy wannabe, but there are loads of women desperate to be one and can’t. I feel for them.

    I’m also assured that I’m still in the grey area for PCOS and Hashi’s. My conditions may never escalate (here’s to hoping) ever in my lifetime if I’m careful enough and vigilant enough about taking care of myself and exercising to lose weight.

    I forgot to mention earlier that most general doctors have never heard of PCOS, or when they have, they admit they don’t know much about it. Even fewer women even know how much damage or risk their ovaries can cause them when they are defective. I try to talk about PCOS as much as I can, whenever and wherever I can, as a result. No one should be ignorant or left in the dark – even if she has perfectly healthy lady junk. Everyone woman should be made aware. Knowledge is always appreciated.

    And you can brain dump on me anytime you like, Kay. Really, I don’t mind. You may find some comfort in reading the forums over at SoulCysters.neet and http://www.pcoschallenge.com/forum. Although you don’t have PCOS, there are lots of overlapping issues you can get information and advice and support on over there from women who have walked down the same path as the one you’re on right now. Hope you can find some answers on either of these sites.

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