PTSD

So, here’s the thing.  I’ve got a lot of crazy swirling around in my brain right now.  And, what makes it an even crazier brand of crazy that just your normal, run-of-the-mill crazy is that I don’t even know if this crazy is justified.  I vacillate between thinking I’m one small step away from totally losing it, and getting terribly, horribly angry that my totally justified fears and concerns aren’t being heard.

Ok, to back up.  Yesterday was my regular 6-month follow-up with my thyroid doc.  Let’s call him Dr. Useless.  (I much prefer his PA, Mr. Has-a-Heart, but neither one holds a candle to my old practice back in the days I lived in civilization.)

Though I was discouraged to be seeing Dr. Useless, I was anxiously awaiting the appointment.  See, things have been weird with me lately.  Where to begin?

  • I lightly bumped my knee on a chair during the last week of July.  The next morning I had a bruise the size of a refrigerator.  The bruise got bigger and badder and more painful for weeks.  It was throbby and purple well into August and now, the last few days of September, it’s shadowy remains are still visible.  This caused me to notice that I was bruising A LOT and healing at a glacial pace.  That time N clung to my arm at daycare dropoff?  Yea, did more than hurt my soul – I’m still carrying around a baby thumbprint bruise on my upper arm 3 weeks later.
  • Now, my office at the job-from-hell is inhumanely cold.  (Like averages 60 on a good day cold.)  But, even still, fingers shouldn’t go blue this easily.  Especially not when accompanied with pins and needles and numbness.  And not when it happens in a comfortable living room nearly as often.
  • My head pounds.  A lot.  Have I got stress?  You betcha.  But enough to make my ears ring and vision go wonky?  I don’t think so.  At least, I don’t get why it’d be that bad now.  I mean, dad’s dead, estate taxes filed, things are actually, gulp, calming?  Har har.
  • Oh, and my weight.  I’m 40lbs heavier than when I started my successful IVF cycle and a good 10lbs heavier than the day my water broke.  Yes, that’s super duper discouraging.  But, then again, I’m still not at my all-time heaviest pre-thyroid diagnosis.  These things come and go, no?

I enter the appointment armed with my list, in exactly the above order.  Well, if you were on Twitter yesterday you probably saw the fallout.  I’ll provide the Cliff’s notes version:

Apparently I'm a fat ass

Yes, I’m bruising, I’m turning blue and tingly, and have regular severe headaches.  Add this to already diagnosed Hashimoto’s, PCOS, antiphospholipid antibodies, and endometriosis.  And a diagnosis history that saw my Hashi’s get off the charts severe before it ever was detected.  My instinct was that yes, of course, we’d discuss my weight.  I mean, I have a mirror and an awareness that I’ve gone back to the potato sack section of my closet.  But, call me silly for thinking that we’d discuss weight in the larger context of a whole host of other unresolved questions.

Nope.  Do you want to see what my visit summary says.  (Reminder: This was a prescheduled, regular 6-month followup for a diagnosed and historically difficult to control case of Hashi’s.):

follow-up summary

Uhhh, alright then.

So, as I sat listening to the “small risk” of suicidal ideation or severe depression or risk of seizures (“Oh, you don’t have a history of seizures, do you?  No?  Great!”) that accompanied the weight loss pills Dr. Useless wanted to prescribe me, I got angry.

On the drive home, that anger turned into deep, deep sadness.  Today, I’m verging on profound hysteria?  Paranoia?  Reasonable dismay?

My mom died of gall bladder cancer at 48.  She lived for years with pain and was told to lose weight, find a hobby, and see a counselor.  She was diagnosed on my 18th birthday.  She died a few months after my 19th.

My aunt was visiting her sister, my mother, in the oncology ward.  A nurse noticed a nasty burn that really refused to heal.  She recommended she see her PCP for some testing.  A few months before she buried her only sister, my aunt was diagnosed with leukemia.  She was 50.  After years of experimental treatments – some of which made her so miserable she begged for death – she’s in remission.  For now.

My grandfather died at 62.  Heart attack.  My mom found him dead in his chair.  He’d been there all night with my grandmother, his wife, calling down for him from the bedroom.

My grandmother was in that bedroom after suffering a debilitating stroke at 61.  She lived into her 70s, but spent my entire life in a nursing home.

My dad lived longer than I can ever hope to.  He made it to 73.  We blamed his confusion on his alcoholism.  But still, he went from a little confused to softball sized brain tumor to dead in about 9 months.

Family medical history isn’t a promise.  I know that.  I truly do.  But, it does matter.  And, that history above was a small part of what drove me to find answers in my 20s to my own medical complaints.  Overcoming infertility was priority number 1, but living a better, longer, healthier life – whether with or without children – was also always in the mix.  So, I made finding answers, getting the good doctors, and securing the most effective treatments a full-time occupation.  I researched, I wrote, I questioned, I pushed, I educated myself which turned into educating others, I embraced being “that patient.”

It was utterly exhausting.  And, to be totally truthful, I never really achieved a feeling of true health and well-being until I was pregnant.  Pregnancy was awesome.  Aside from my body doing that totally average task of growing another human, it also just. plain. worked.  Like, for the first time.  Ever.  I joked with my maternal fetal medicine doctors and nurses that I would happily go through labor every 9 months for the rest of my life if it meant I could feel like I felt then.  And, now on the other side of an unmedicated, natural laboring experience, I would still say the exact same thing.

So, now I feel like I’m circling back down the drain again, but it’s even worse this time.  See, now I have the the knowledge that even an immense amount of time and effort (and, let’s be honest, time and effort I don’t really have with an adorable and mischievous 15 month old in my life) still probably won’t result in me feeling as good as I’d hope to feel.  It’s hard not to feel like well-being is always going to be elusive.

And, that fatalism mixes with the knowledge of my family’s mortality and leaves me fearful.

I don’t want to die.

Melodramatic much?  But, yea, welcome to my current headspace.

I know what I should do.  I mean, I just need to heed my own words.  Find the right doctors.  Do my own homework.  Be relentless.  But I’m just so very, very tired.  And I can’t believe I’m back here.  You know that feeling you get when your computer crashes and you lose all your work after pulling an all-nighter right before a deadline?  Yea, that.  Except I’m the computer, the operator, and the deadline all wrapped up in one.

United in stunned disbelief: A blog rec

I’ve kinda been all over the place lately.  I spent my first 3 nights away from N this past weekend.  I had to go out and start attending to my dad’s house.  (The sheer volume of mouse droppings on his countertops when I dragged myself in the door after an epically bad 8.5 hour drive assured me that the trip was necessary.)  All three of the ButIf’s, not the least of which the littlest ButIf, have been sick off and on since at least November.  The hubs and I, both still recovering from last month’s pneumonia diagnoses times 2, are struggling to identify our roles as parents, to find a schedule somewhere in this life that has absolutely refused to be scheduled.  Dealing with orphanhood has also been weighing me down.  Not just the obvious emotional toll, but also the medical bills, the calls to the estate lawyer, the drive to pick up the cremains, the arguments with water companies that expected his bill to be paid on time despite the fact that their customer died the day before his bill was due…  I digress.  But, finally, my health has also been a constant elephant in the room.  I’m in pain a lot these days.  Surely all the driving and the physical exertion at my dad’s house isn’t helping, but no 31 year old should hurt this much.  Tingling hands, aching legs, the reemergence of the hip rash, weighing 10 pounds heavier at 9 months postpartum what I did the day I delivered, a back that causes constant, sleepless pain.  Next week’s rheumatologist appointment can’t come soon enough.

But, as I circle the wagons in preparation for another battle with medical professionals (albeit one that I still have some respect for), it’s causing me to reflect on my experiences with the medical field.  To put it simply, I’ve been failed just so many times.  And the cause hasn’t really mattered.  What unites my experiences navigating the medical diagnoses of infertility, repeat miscarriage, endometriosis, Hashimoto’s, PCOS, and my as of yet undiagnosed spondyloarthropathy is one thing – I’ve had some truly baffling responses lobbed at me.  The college health center MD who, upon first suggesting PCOS as the reason for my missing menses, casually stated to 20-year-old me, “You’ll be infertile, but otherwise you’ll be fine.”  The PCP who recommended a hobby and counseling would cure my uncontrollable and unexplainable weight gain.  The OB/GYN nurse who spent 10 minutes badgering me to tell her exactly which prenatal vitamin I’d been taking, even though she knew that day’s appointment was the one at which I’d be told that I needed to terminate the suspected ectopic pregnancy I’d been carrying after 18 months of trying.  The phlebotomist who offered to be my surrogate because, “I get knocked up whenever my husband looks at me!”  The other OB/GYN who, upon learning I’d relocated to the area, was infertile, and was going to be pursuing more infertility treatments, kept talking to me about the REI in the big town up the road (apparently years of medical school and residency in the field of obstetrics didn’t dissuade her of the notion that one goes to a sporting goods store to treat infertility).  The rheumatologist who told me she couldn’t help me until my disease had progressed to the point that I could no longer function.  The common thread is the sheer WTF-ness of it all.

And, I’m not alone.  That’s why I was happy to stumble upon the new blog You Need a New Doctor.  There’s a few things that sharing these truly horrifying stories can do.  They instill solidarity in those of us who have endured them, they let us know that (sadly) we are far from alone.  They give us a chance to laugh (or cry) along with a community of fellow-travelers.  They shame a system that has repeatedly failed us.  They inspire us to help make the system change.  They let external observers in on the dirty little secret that one person’s “unfortunate bad experience” is, in fact, an entire community’s burden.  We can do better.

So, please check it out.  And, while you’re there, check out my own submission about my third miscarriage – Thanks for the Jar?

Failure to Thrive

This post has been a long time coming.  It’s also going to hurt to write.  But it will also help explain my sparseness in posting since Baby ButIF’s appearance.

I’m pretty sure that if you went back and read through a lot of my pregnancy posts you’d catch me saying here and there, “if I’m able to breastfeed,” or, “I talked with my counselor about ways to overcome my disappointment if I can’t breastfeed,” or even, “With PCOS and thyroid disease I’m pretty sure breastfeeding’s gonna be a total crapshoot.”  So, yea, I knew the cards were stacked against me.  Just as surely as my F-ed up hormones made it damned near impossible to get and stay pregnant, I knew they could also make breastfeeding a challenge.

Rather than be fatalistic about it, I thought I was being rational and proactive in preparing coping strategies in advance.  Though I have endless angst over it, I’ve become used to my body not working quite right.  At least, I thought, I could put that hard-won knowledge to use and spend some time – say 9 months – setting my expectations.  So, as the months of my pregnancy went on and my breasts failed to change one single bit I was pretty certain I was getting my answer.  We’d go to the hospital, I’d deliver, I’d skin-to-skin and attempt to feed him, I’d fail to produce anything, and we’d jump on the formula train.  Easy, peasy, no?

In fact, I was so worried about setting unrealistic expectations that I – yes, Type A, research everything to death me – didn’t do a lick of research into breastfeeding.  I called our insurance just to have an idea what my breast pump benefit was, I registered for a bottle brush and a nursing pillow, and watched a BabyCenter video on breastfeeding holds, but that was literally all I did to prepare.  Just as I’d avoided all pregnancy and parenting conversations for 4.5 years, so too did I spare myself from all things breastfeeding for fear I’d never get to put that knowledge to use.

Trouble was, that lack of preparation led to some pretty uninformed assumptions on my part.  I’d assumed it would be an all or nothing scenario.  I’d either have milk, or I wouldn’t.  My body would work, or it wouldn’t.  I’d be pregnant able to breastfeed, or I wouldn’t.  Black-and-white with no room left for gray.

When the day came for what I thought was the final verdict on breastfeeding, I was anxious.  I asked for a lactation consultant (LC) as soon as we were transferred to the postpartum floor and she quickly arrived despite it being almost midnight.  The first words I said were a simple, “I don’t know if this is going to work.  My breasts didn’t change at all during pregnancy and I have PCOS and Hashimoto’s.”  She was encouraging and said, “Well, let’s try and hand express and see what’s there.”  I was skeptical but started squeezing as instructed and giggled like a silly school girl when a blob of gorgeous yellow colostrum quickly beaded up on my right breast.  “This is going to work!” I thought.  “I’m going to be able to breastfeed!”

For the rest of my stay in the hospital I followed instructions and woke him every three hours to feed.  In the 36 hours between little man’s delivery and my discharge from the hospital I saw 4 different lactation consultants and heard different versions of the same advice multiple times.  He didn’t need much right now.  It was normal for a newborn to be sleepy.  Yes, I’d need to wake him to feed until he regained his birth weight.  No, it was far too early to start thinking about pumping.  Everyone can breastfeed as long as they try hard enough and have enough support along the way.  And, yes, I was doing wonderfully.

On the morning of our discharge out little man had dropped 11% of his birth weight, but we were still cleared to leave.  They reminded me that since he’d been born in the evening and we were being discharged in the morning that a full 48 hours hadn’t passed and that was why he’d lost slightly more than their 10% upon discharge standard.  He was having wet and dirty diapers, latching like a champ (when awake), and I had the support and education I needed to be successful.  I accepted it – happy to get home to my own bed, my own shower, and start my so longed-for life as “mom.”

We were discharged on a Saturday, meaning our first appointment with the pediatrician would fall on a Monday – his fourth day of life.  When Monday rolled around he’d lost an additional 7 ounces.  Our extremely breastfeeding friendly ped felt that our problem was his sleepiness; he just wasn’t awake enough to get an adequate amount down each time.  She sent us off with hugs and words of encouragement and scheduled us another appointment for the following day.  24 hours later – despite 8 hours of active nursing logged in my baby tracking app, no matter the fact that my husband dutifully jabbed his thumb HARD into our little man’s foot every 3 hours like clockwork – he’d gained exactly 0oz.  Nothing.  The ped said not to worry.  As long as he wasn’t losing at this stage they were happy.  Keep at it, drink lots of water, keep waking him however possible, and return in a week.  You’ve got this!

I put my heart and soul into breastfeeding, while, at the same time, I felt like I was falling apart.  The morning of his 2 week appointment Mr. ButIF asked, “Do you think there’s something wrong with your thyroid?  You really don’t seem right and I know I’ve seen this before.”  I knew he was right.  The fatigue I was feeling was more than typical new parent exhaustion.  And, given my med-free birth, I couldn’t think of a single thing that could account for the all-over body numbness I was feeling.  I’d only felt that once before…

But, I knew I’d sacrificed my sleep and sanity for a good cause.  I just knew my baby had grown.  Turns out, however, he’d lost yet another ounce.  My perfectly average, 50th percentile 7lbs 6oz boy at birth was now barely on the breastfeeding growth charts at 6lbs 7oz at 2 weeks old.  Now the ped was getting a little worried.  She recommended the herbs Fenugreek and Blessed Thistle, talked about the drug Domperidone – which she couldn’t prescribe as 1. It’s not available in the US market, and 2. She’s not my doctor – and sent her practice’s LC in to teach me how to use a supplemental nursing system, or SNS.  I was barely holding it together when the LC entered the room with a jug of ready-made formula and the SNS – basically a torture device syringe the lactationally challenged mother fills with formula or expressed breast milk, tucks into her bra, and hooks up to a feeding tube she can either tape to her breast or hold with one of her 4 available hands and sneak into her fussy, hungry (and obviously endlessly compliant) newborn’s mouth when he isn’t looking.  I tried out the SNS in her presence for about 5 minutes – it took the combined power of six hands (mine, hers, and the misters) to get it working – before she sent me off, soaked through my shirt, bra, pants, and even underwear with formula, with a “Good luck, you’ve got this, use the SNS at every feeding!”  I spent the next several days (coincidentally, the first days I was home alone with Baby ButIF since the mister was back to work after his 2 week “vacation”) crying more than my hungry newborn.  I stunk of formula, I hated my body, I was lower than I ever thought I could get with my longed-for miracle in my arms.

When we returned home from that 2 week appointment I immediately called the high-risk OB who’d managed my pregnancy.  Three agenda items:

  1. Please test my thyroid, something is off!
  2. Can I got back on Metformin?  I can feel my PCOS reemerging and it might help me breastfeed.
  3. Will you prescribe Domperidone to help with breastfeeding?

I got the following three answers from the triage nurse.

  1. No, you’ll have a thyroid panel done 6 weeks postpartum, and no sooner.
  2. No, Metformin is not safe while breastfeeding.
  3. Absolutely not.  Take Fenugreek and drink water.

I cheered myself up by crying over my tiny son while I attempted to shove the SNS tube down his throat again.

Our 2 week appointment was on a Thursday, we ordered an infant scale and had it overnighted to us on Saturday, and when our precious baby boy woke up with sunken eyes and even more lethargic than usual on Sunday we weighed him.  He was now 6lbs 4oz.  From a birth weight of 7lbs 6oz.  It was time to stop fooling around with the SNS.  We mixed a giant bottle of formula and my husband fed him while I called and cried my eyes out to the on-call LC at our delivery hospital.  She assured me “true” supply problems were very rare, and that I should keep on with the bottle today and pump religiously every 3 hours for the next 48 hours just to see what we were working with in terms of my supply.  I did exactly as ordered.  Pumping through the night, through the days, pumping with one hand while trying to comfort a newborn just learning what it felt like to be well-fed with the other.  In 48 hours of round the clock pumping I pumped 5 ounces.  Total.

I did two things on Tuesday.

  1. Called my endocrinologist seeking thyroid testing.
  2. Found an amazingly supportive low-supply Facebook support group.

The support group informed me that Fenugreek – that herb that had been recommended by friends and family members, our ped, and, yes, even the high-risk OB practice who had carefully monitored my thyroid throughout my pregnancy – was, in fact, contraindicated in women with thyroid disease.  As in it could make my supply WORSE not better and totally throw off my thyroid in the process.  I immediately stopped it.

The endocrinologist consented to the retest, but wanted the labs drawn at their offices over an hour from my home.  That wasn’t happening with a 2.5 week old that needed to be forced into being fed every 3 hours, with a husband that was back at work full-time, and with a mama that was barely sleeping.  I begged them to let me do it locally.  The cheery nurse on the other end of the phone agreed and said, “OK, I’ll send off the requisition today!”  I said, “Great, here’s my email address.”  She replied, “Oh, no, we can’t email.  I’m sending it in the mail.”  I celebrated that minor victory by crying as I prepared another bottle of formula for my teeny, tiny son.

We first suspected my thyroid was off at 2 weeks postpartum.  I got my bloodwork results at 5 weeks, 1 day postpartum.  Normal range 0.3 to 2.5.  Mine?  0.07.  I forwarded the values to my husband in an email with the subject line, “I’m not fucking crazy!!!”

Things started to turn around then, but remain a challenge.  I’ve since found a fabulous IBCLC (International Board Certified Lactation Consultant) through our county health department who makes weekly home visits to help out (and, oh does she!).  I restarted my Metformin (against doctor’s orders) and saw an immediate increase in my supply.  I ordered Domperidone from a foreign pharmacy and, again, saw a supply increase.  And, most importantly, my breast AND formula-fed baby started staying awake, gaining ounces, and smiling, cooing, and doing all things happy and healthy babies should do.  On any given day he gets around 50% from the breast and 50% from the bottle and that’s a HUGE increase from where we stood a few short weeks ago.  I try to remain realistic with my goals – he’ll never be exclusively breastfed – but I know I’m doing the best that I can, and that’s all I can ask of myself.  I worry about how things may change when I return to work on September 10, but that’s a bridge I’ll have to cross in the coming weeks.  Thankfully that’s a bridge I’ll cross armed with the info and support I most certainly didn’t have in the beginning despite all the LCs and MDs and random strangers on the Internet who told me otherwise.

No, not every woman can breastfeed, but I’m thankful that I had the hard-won strength, determination, and drive that IF gifted me to accompany me on this difficult journey.  Breastfeeding is not black or white, all or none.  I’m finding my way living in the gray.

Help! I need somebody!

And, not just anybody.  I need a doctor who will treat my thyroid.  Who knew it could possibly be this hard?  But, I’m getting ahead of myself.

I waited with a fair amount of restless impatience on Wednesday for my latest round of beta results.  And, not just beta and progesterone, either.  I was pretty annoyed on Monday when I discovered my first beta draw didn’t also include a TSH check.  It’s been a standard part of my workup with every other (negative) beta for the past 6 months, so why they left it off this time is beyond me.  So, when my blood was drawn at 7:30am I requested that a TSH be added.  I got minimal push back from the nurse, but I’m used to fighting.  Anyway, blood exited the veins, and I was told I’d hear something by 11am.  At noon I hadn’t heard a thing so I gave in and called.

That phone conversation is hard to paraphrase, so let’s just do this Shakespeare-style.

Me: Yes, I’m calling for my blood work results from this morning.

Nurse: Uh, yea.  Still pregnant.  When do you want your ultrasound next week?  Wednesday, Thursday, or Friday?

Me: Wait, what?  What was the value?  What was the TSH?  How’s the Progesterone?

Her: Um, I gotta open your chart back up. Gimme a second. [Gum smack, gum smack.]  HCG was 256.  That’s fine.  When do you want your ultrasound and who is your OB?

Me: [Doing the math on the fly] But, that didn’t quite double from my 139 on Monday.  Are we really not doing another beta?  I won’t get anything else until over a week from now?  What about the other values?

Her: I don’t know what to tell you.  Everything’s fine, so there is no reason to retest.  You can see the rest of your results in the portal later today.  I already closed your chart again.  Call your OB.

Me: I don’t have one!

Her: Well, that’s silly.  Get one.  We will release you at 8 weeks and won’t help you from that point on.

Me: But I’m barely 4 weeks!  I’m not calling one.  Not yet.  I’ve had to cancel three OB appointments before due to miscarriage.  I’m not doing it again.

Her: Well, I don’t know what to tell you.  How about next Thursday for your ultrasound?  7:30?

Me: [In tears] Wait what?

Her: We’ll see you next Thursday, October 24 at 7:30am.  Call an OB!

After I was hung up on I sent an email to my boss saying I suddenly didn’t feel good and would be going home for the rest of the day.  I stayed home in my pajamas crying for the next 36 hours.  The Mr. and I spent an additional 90 minutes screaming at one another last night about how many more miscarriages we can possibly handle.  He said things like, “I just don’t have the energy to watch you miscarry 9 more times with 9 more perfect embryos!”  I heard things like, “Why did I marry this barren shrew who keeps killing my children?”  It was good times.

Equally good was what I found when I logged in to my patient portal teary eyed on Wednesday night.  Yes, the HCG went from 139 to 256.  Perfect is doubling in 48 hours or less.  Mine was on pace to double at 54 hours.  Not remotely terrible or doom and gloom depression-worthy, but that’s still the emotion it evoked.  After 4 years and 3 prior losses anything less that absolute perfection generates worry.  I’ve been full of worry ever since.

But, it turns out, the beta was just the tip of the worry iceberg.  My amazing progesterone on Monday of over 40?  Yup, dropped to a pathetic 19 despite daily Crinone suppositories and PIO injections.  Oh, and that TSH they had no intention of running?  Yea, about that…

Co-sponsored by the American Association of Clinical Endocrinologists and the American Thyroid Association, 2012’s “Clinical Practice Guidelines for Hypothyroidism in Adults” recommends the following course of action for pregnant women with elevated TPOAbs or Hashimoto’s:

When a woman with hypothyroidism becomes pregnant, the dosage of L-thyroxine should be increased as soon as possible to ensure that serum TSH is <2.5 mIU/L and that serum total T4 is in the normal reference range for pregnancy. Moreover, when a patient with a positive TPOAb test becomes pregnant, serum TSH should be measured as soon as possible and if >2.5 mIU/L, T4 treatment should be initiated. Serum TSH and total T4 measurements should be monitored every 4 weeks during the first half of pregnancy and at least once between 26 and 32 weeks gestation to ensure that the requirement for L-thyroxine has not changed. [Emphasis mine]

When I started this cycle, my thyroid was well controlled on my usual Synthroid dose.  On 9/18 my TSH was a beautiful 0.49.  My redraw on Wednesday?  5.69?!?!?!

On Thursday morning, I wrote my endocrinologist asking what to do.  On Thursday afternoon they left a message on my work voice mail (good thing I skipped work given my hysterical I’m gonna miscarry again crying fit, right?) saying they couldn’t go on what I told them, but needed to have my RE fax lab results to them.  My RE closes at noon on Thursday.  Last night at midnight I wrote a hysterical email to my RE’s nurse basically saying, “Why isn’t anyone paying attention to me?  Why won’t you help me?” (Yes, it was about that eloquent.)  This morning she wrote back saying calm down, we’ve faxed your results.  Later this morning a message arrived from my endo’s nurse saying, “We don’t treat pregnant patients, you will need to talk to your OB.  Who are you seeing?”  I wrote back with the same damn, “I don’t have an OB and I don’t plan on having one!” I gave my RE’s nurse on Wednesday.  And, that was that.

So, basically, by 2 this afternoon, I was left with the following:

  • RE won’t treat my thyroid since I have a thyroid-specializing endocrinologist.
  • Endocrinologist won’t treat my thyroid because I’m pregnant and that’s an OBs job.
  • OB won’t treat my thyroid because, well, I don’t have one.  But, even if I did, my experience has been that OBs won’t see patients this early anyway, so what good would it even do to have one?
  • Oh, and my rural PCP (who isn’t even in the office on Fridays) thinks any TSH under 10 is hunky dory.

Whee!!!

I escaped home from work and started making phone calls again, desperate to get some sense of resolution before the weekend (my 30th birthday weekend!) began.  It went something like this:

  1. Accept I must call a fucking OB at all of 4w4d pregnant.  Hyperventilate.  Explain situation.  Sound like a crazed woman.  God bless the patient receptionist who listened and cared.  Unfortunately, listening and caring doesn’t solve the fact that I’m not their patient, they’ve never seen me before, they don’t have my blood work, and it’s far too early to book an OB appointment with them.  She encouraged me to push my endo a little harder, but, after I told her I was seeing the thyroid center attached to the same teaching hospital their practice is attached to, she acknowledged they tend to not want to treat pregnant women for fear of liability.  Good thing I haven’t had about 5 conversations with my thyroid doc in the past 18 months saying I was specifically there so that they’d manage my care through pregnancy, eh?  Anyway, sweetheart scheduled me in as a new GYN patient (NOT an OB patient) for next Thursday.  Yes, the same day as my ultrasound.  But, at least since it’s a GYN appointment I won’t have to cancel it if I find out that morning I’m miscarrying, right?  Always looking on the fucking bright side.  That’s me alright!
  2. Try and call endo and get an answer that isn’t simply “Talk to your OB.”  Dial.  Press 0 to speak to a member of the staff.   Silence.  Dial back, press 0, silence.  Dial back, press 1 “if you’re a physician or a physician’s representative” (what the fuck do I care at this point?), receive error message that the extension is not available so try another extension.  Cry.  Give up.
  3. Call RE’s nursing line.  Get “Why don’t you have an OB?” heartless bitch nurse on the line.  Simply ask for the slightly less bitchy nurse I sent my emotional breakdown of a portal message to last night to call me back when she has a chance.  Hang up.  Cry.
  4. 30 seconds later, slightly less bitchy nurse returns my call.  She says, “Honey how are you?”  I cry.  And, then cry some more.  She orders me a prescription for 150mcg to replace my 112mcg of Synthroid.  She assures me there is nothing I can do (or that they are really willing to do) between now and next Thursday.  She tells me to always feel comfortable asking for her directly.  As I whimper out a, “Sorry I’m being so unhinged and irrational,” she responds back, “Honey, you have every reason to be irrational right now.  You’ve been burned enough times before and you won’t feel alright until you are holding this baby.  What else can I do to help make this better?”  I just start sobbing even harder.
  5. I call and set up an appointment with an infertility counselor.  Yea, you guessed it, it’s scheduled for next Thursday…
  6. Endo calls back.  He’s ordered a prescription for 137mcg and apologizes for the inconvenience.  He just, “Doesn’t like the confusion of handling pregnant women since usually OBs want to make those calls.”

So, I’ve gone from self-medicating by cutting my pills in half, to shortly having an arsenal of Synthroid prescriptions in different doses in my bedside table.  Not quite sure what the pharmacy is going to make of me, but that’s a call I’ll make for another day.  I can’t handle more phone battles right now.

But, let’s look on the fucking bright side, right:

  • I theoretically have an OB/GYN again for the first time in a while.  (Talk to me about whether this is a bright side when I have to face sitting in that waiting room again on Thursday.)
  • I will shortly have a full party array of Synthroid in all it’s beautiful colors.
  • My RE’s nurse has once again underlined that gold star next to my name denoting, “This chick is batshit crazy, handle with care!”
  • I managed to stop thinking about miscarrying for nearly an entire day since my focus instead was directed toward my thyroid.
  • It’s Friday.
  • I always wanted to have kids by 30, so at least I’ll be able to say I was technically pregnant on my 30th birthday this Sunday.  Close enough, right?

I’m risky business

So, I almost lost bowel control in my endocrinologist’s office last Thursday.  After honestly venting my frustration with how poorly I felt my visit to the rheumatologist was handled last spring, my endo displayed sympathy and a dry wit I hadn’t really realized was there before.

I’ve had a grand total of one visit with this PA since moving north (my initial consult was with the actual MD and left me feeling lackluster and sad that I’d left some excellent quality of care behind in Delaware).  That one visit was good but less-than informative.  He listened without criticism when I complained of back pain and skin rashes (those same recurring ailments that have driven me to various doctors for years), and he even agreed to followup on them with some bloodwork.  That bloodwork found an unusually high titer of ANA which triggered the referral out to rheumatology (and commenced the giant wastage of timeage that was that adventure).  So, yea, when viewed through the usual lens I apply to my physicians (“Did he insult me?” “Did she say something I know to be outright medically untrue?” “Did they send me home with a sterile collection jar and say good luck?”), he was pretty amazing.

But, back to the shitting a brick mid-checkup.  After recounting my time with rheumatology he responded, “That’s so frustrating, isn’t it?  Rheumatologists, man, sometimes I don’t even know what language they are speaking!”

(My eyes began bugging out of my head here.)

So then, he turned from the computer, looked me straight in the eyes, and asked:

What resources have you been able to find to tell you more about your conditions and explain why this has all been so difficult to diagnose and pinpoint?

Breath taken away.  As was my ability to speak, form coherent sentences, and (nearly) keep my shit in place.

You see, I’ve practically made doctor’s-appointment-going a full time job for the past 4 years.  Never once has a doctor asked if I was educating myself.  Never once have I been told of the importance of doing my own homework.  Never once have I not been laughed at for admitting that I’d done tons of reading and research on my conditions.  It seems I now have to amend all those sentences.

This man actually wants me to be proactive, stay informed, and engage in a conversation with him as we work through my medical issues.  As I engaged in my usual dismissive answering behavior (“Yes, I did have that rash, but it went away.  I don’t think it is tied to the seasons, but I guess I don’t know, it could be…”), he actually scolded me a teensy bit.  “No,” he said, “these autoimmune conditions can be funky.  Would you believe I get a flare-up of Raynaud’s every three years like clockwork?  Never any other time, just every three years.  I know countless doctors who would laugh me out of their offices, but I’ve lived it so I know it can happen.  Just keep an eye on those rashes, ok?”

Bestill my beating heart.  I think I’m about to dump Mr. But IF for this 6’4″ older male doctor.

When we got to talking about my future plans – the IVFs, the possibility of more pregnancies, my desire to have his office on my side in those early days of pregnancy when my thyroid is so very prone to wreaking havoc – he offered me more advice.

“You’ll be seeing a perinatologist, right?”

I stared blankly for a while before I managed a, “I’ve always been told I’m not a potential high risk pregnancy.  Is that wrong?”

“Yes,” he answered, “I think you’ve been through more than enough.  I want to make sure you get all the monitoring you think you need.  If you have any trouble, give us a call.”

Now, maybe its odd to be so thoroughly thrilled to be informed I’m “high risk” before I even manage to conceive, but I left happy.  Someone’s taking me seriously for once, and I’m holding firm to that.  (And, let’s face it, after 4 years and 3 miscarriages I’ll gladly take all the extra monitoring they can throw at me if I ever manage to get and stay pregnant again.)

I’m off to see the endo

Can we all just take a deep breath and celebrate the fact that I’ve managed to get it up to post three days in a row?  Huzzah!

I have my regular 6-month check up with my endocrinologist this afternoon.  I’m feeling odd about it.  For the first time in the 3.5 years since my Hashimoto’s diagnosis I’m walking into an endo appointment without a list of questions nine miles long.  Part of me wants to celebrate the fact that that clearly must mean things are finally as they should be and that managing my thyroid disease has become that mythical “not a big deal” all my now-fired doctors once promised.  Thing is, though, that’s not the cause.  The cause is primarily that I’ve gotten so good at managing my own care by now that I really only need the doc to write my scripts these days.  And, of course, there’s the fact that I’ve already had my “I’m-on-the-brink-of-starting-IVF-please-help-me-manage-my-thyroid-through-it” appointment.  It was over a year ago, two doctors ago, and 300 miles away.  Ah, memories.  Nothing like repeatedly gearing up for a whole lot of going nowhere over, and over, and over again!

The one thing I am certain of is there is no way I’m getting delayed.  The fallout from my last endo check was tremendous.  It was this practice that first noted my elevated ANAs last winter, and insisted on my having a thorough going over by a rheumatologist before returning to treatment.  Good right?  Not really.  The earliest this practice would get me in with their sister rheumatology group was 3 months away.  I found another clinic that would only make me wait 5 weeks.  I went seeking answers, and left with a “who the hell knows?”  We’re not doing that again.  I don’t care what they find, we’re sure as hell moving forward this time.

Well, it’s about that time.  An hour up to the doctor, surely an hour wait (they are always insanely over-booked), a 10-minute visit, and then an hour drive home.  The glamour of my life I tell you!

Hashimoto’s manifesto

Several years ago I had hoped that my days would be filled with learning all I could about pregnancy and motherhood.  I’m most comfortable attacking the unknown when I have read, compiled notes, and analyzed things from multiple perspectives.  I can cram knowledge into my noggin with the best of them, so I suspected I’d do the same come time I was a mother.

Over the course of the past several years, however, I’ve had little need for the type of study I thought I would.  Instead, I’ve been engaged in pursuing an even more rigorous course of study that I’ve come to jokingly call my MTD – my Masters in Thyroid Disease.  I’ve wanted to write this post for a while, wanted to get all those helpful things I’ve learned along the way down onto paper so I can point friends and family and total Internet strangers to this page rather than retyping the same advice I’ve already typed a thousand times over, but it’s so bloody overwhelming.  While I had hoped to be Queen Motherhood by now, I’m still in a lesser court.  I’m the Princess of Hashimoto’s.  And, even pompously pronouncing princess with a stress on the “ESS,” still doesn’t make that title nearly as nifty as Queen Mum.  But, I shall use my powers for good.  And today is the day I’m making that happen.

Today is as good a day as any, because 1. we definitely need a distraction, and 2. there’s a bit of shit-storm happening in the thyroid community right now (more below).  So, in 5 parts, I give you my Hashi’s manifesto.

1. Diagnosis

Do not trust doctors, do not trust laboratories, do not ignore your symptoms.  I’ve covered in my greater detail elsewhere my own horrid path to a Hashi’s diagnosis, but suffice it to say here that a hard battle is the norm.  Most patients struggle with symptoms for years before obtaining an accurate diagnosis, and, even after diagnosis, find that their symptoms don’t abate as much as they had hoped.  I could offer my own thoughts on why this is the case – why this autoimmune condition so much more predominant in women (10 to 1) and so likely to lead to weight gain and depression is totally misunderstood and misdiagnosed by medical generalists – but those are the discussions of a healthy person.  When you feel as if your life is crashing down upon you, you can’t get out of bed, you are covered in bruises, you feel no joy in life, you are putting on weight at an alarming weight, you forget how to perform simple daily tasks, you don’t remember what it is like to feel warm or have skin that isn’t flaking off, and the finality of death sounds better than the pain and suffering of the hear and now?  That’s time to act, not react.  Do your homework, check out the links I’ve collected here, take a deep breath, and prepare for battle.

2. Thyroid Labs

Never accept “you’re normal.”  In my opinion, the number one issue in the diagnosis and treatment in thyroid disease in this country stems from lab companies.  Since 2003, the American Association of Clinical Endocrinologists has recommended a normal TSH reference range for adults of 0.3 to 3.0, yet every lab I have interacted with in the past 3 years has employed a much broader reference range.  In 2009 Quest Diagnostics used 0.4 – 4.5, as of this year LabCorp’s range is 0.45 – 4.5, and even my current endocrinologist’s in-house lab uses a range of 0.27 – 4.20.

Does a point and a half make that much of a difference?  My answer is a resounding yes.  I first went to my old GP in 2009 complaining of extreme fatigue, muscle pain, memory loss, absent periods, and depression.  She sent me away with a referral to a psychiatrist, but did agree to run a TSH.  When her receptionist called the next day to tell me the test was “normal,” I sunk even further.  When, less than two years later, my desire to become pregnant started to refuel my drive for answers, I requested a paper copy of my 2009 labs.  At that time, my TSH was 3.94.  I was having crippling symptoms at 3.94.  When I finally got a retest in early 2011, my TSH was 55.38.  That small elevation in my TSH in 2009 merited further investigation, but in this world where PCPs are expected to spend, at most, 12 minutes with each patient, my doctor had never even looked at the value.  She later admitted to me, “If it isn’t highlighted [meaning the lab flagged it as falling outside their normal ref range], I don’t look at the value.”  Since getting in with an endocrinologist, I have had affirmed, confirmed, and reaffirmed to me that patients with Hashimoto’s do best in the 1.0 to 2.0 range and that TSH tests are woefully bad predictors of one’s overall health.  Always get complete copies of all your lab results and do your own homework.

Don’t rely on the TSH.  The TSH test is the standard-bearer in the generalist’s approach to thyroid disease, however, TSH isn’t even a thyroid hormone.  Thyroid stimulating hormone is produced by the pituitary in response to a perceived need for increased levels of the thyroid hormones themselves, most notably thyroxine (T4) and triiodothyronine (T3).  This is what leads to the confusing fact that when one’s TSH is abnormally high, that means their body has too little thyroid hormone (or, they are hypothyroid), yet when the TSH is too low that means one is producing too much thyroid hormone (or, they are hyperthyroid).  So, the most common test used to diagnose and dictate treatment for thyroid hormone insufficiency or surplus is a test that has only a feedback relationship with the thyroid itself.  Why?  Because the test is cheap, it’s been around a long time, and the medical establishment is very slow to change.

TSH can also be subject to more rapid change, than can the thyroid hormones themselves.  External factors like the time of the day, a patient’s stress level, the time of the year, and food intake can radically alter the TSH.  Swings of as much as 3 units over the course of the day occur in normal, healthy patients.  In most people, the TSH is highest around 2AM and lowest around 2PM (the pituitary does much of it’s work while we sleep).  So, my 3.94 labs in 2009 that were taken at 2PM?  Pretty piss-poor window into my thyroid function.

And, don’t be placated with a Total T4 and Total T3 either.  Let’s take a big step back.  The thyroid is responsible for controlling the body’s metabolic system.  It largely accomplishes this by secreting thyroid hormones (the most prevalent and powerful of which are T4 and T3).  T4 is the most commonly found thyroid hormone in our systems and is the precursor hormone to the other thyroid hormones.  What separates T4 and T3 chemically is 1 iodine atom; T4 has 4 iodine atoms, T3 has, well, you get it, 3.  While T4 is about 20 times more prevalent in our bodies than is T3, the T3 is the real workhorse in the equation.  If T4 is a cold cup of coffee, T3 is the straightest, purest Meth you can get your hands on.  When TSH is increased, the thyroid produces both T4 and T3, but at vastly different quantities.  In most healthy people, the balance of the thyroid hormones produced directly by the thyroid is about 80% T4 and 20% T3.  So, where does the rest of that Meth we need come from?  By the prohormone T4 dropping one iodine atom and becoming T3.  About 85% of all T3 is produced by this conversion of T4 to T3.  So, all we need to know is whether or not we have enough T4 and T3, right?

Nope, there’s more!  Not all T4 (or T3 for that matter) is available for use by our bodies to do such minor little jobs as, oh, keeping our body running, our cells synthesizing new proteins, our vital organs functioning.  Actually, the majority of T4 (and T3 to a lesser degree) are just hanging out in their parents’ basements unwilling to go out and get a job.  These “bound” T4 molecules ride around on proteins (most predominantly that sexy bitch thyroxine-binding globulin) and, as a result, can’t be used by our metabolic system.  Only free, unbound T4 and T3 are in play, yet doctors continue to test and treat based on the total amount of T4 and T3 in our systems.  If you request lab work, and you don’t see a “free” next to your T4 and T3 numbers, run to the next doctor on your list.

In range is different than optimal.  As with the TSH, there’s a big difference between being in the lab’s normal reference range and having optimal Free T4 and Free T3 values.  For patients with a history of hypothyroidism, it’s best for the Free Ts to stay in the upper quartile of your lab’s unique range.  Check out this T4/T3 range calculator.  If your results aren’t at least above 50% for both values, you are likely dealing with a thyroid hormone deficiency.

3. Autoimmune Disease

Yes, it makes a difference.  When I finally secured my diagnosis, I was given a (way, way, WAY to high) prescription for generic levothyroxine and sent on my way.  I asked why my body had essentially stopped producing thyroid hormone, and was told the why didn’t matter as long as I took my pills.  That wasn’t enough for me, so I pushed.  I’m glad I did, because it most certainly does make a difference (especially, it turns out, if you are trying to become pregnant).

It is believed that about 80% of all hypothyroid patients are hypothyroid because of an autoimmune attack on their thyroid – an autoimmune disorder known as Hashimoto’s.  (Honestly, me and my educated self think this figure is MUCH MUCH higher, but so few people get proper testing, their cases go unreported.)  While the symptoms and clinical presentation of Hashi’s and hypo are generally the same, what distinguishes the two is the cause.  Hashi’s can really only be 100% proven by a needle biopsy of the thyroid, which is pointlessly invasive if there are no cancerous or abnormal growths suspected, but doctor’s are able to assume a diagnosis based on the results of two antibody tests.  Anyone that has or suspects they have thyroid disease should have these tests, though 90% of the thyroid patients I know (including myself) have had to walk into a doctor’s office and ask for these tests point blank.

It’s like a light switch.  The two antibody tests for hypothyroid patients are the thyroid peroxidase antibody (TPO) and thyroglobulin antibody (TGAb).  Much to the surprise of my GP (eye roll) BOTH must be tested when investigating an autoimmune cause for hypothyroidism because a diagnosis of Hashi’s can be made if either is elevated.  And, unlike the scrutiny we put on the numeric values of TSH and Free T results, these antibody tests are like a light switch.  If the result of either test is elevated, you have Hashi’s.  Plain and simple.  The number doesn’t matter.  And, drawing on the analogy, this is a light switch that, once on, can never be turned off.  Even if subsequent testing reveals antibody levels back within normal ranges, you still have Hashi’s.

The rollercoaster, the bedfellows, the silent cases.  So, why does it matter for the hypo gal or guy to know whether or not they have Hashi’s as opposed to non-specific hypothyroidism?  Three primary reasons:

  1. Hashimoto’s essentially means your body’s immune system has decided your thyroid is a tasty little butterfly shaped treat that is ripe for the picking.  Sometimes the immune system is hungry, sometimes it isn’t.  Sometimes your thyroid is able to fight back, other times it can’t.  And, for some, sometimes the gorge-fest may ultimately result in very little of the thyroid being spared.  The result is that patients can swing uncontrollably hypo to hyper to euthryoid to hypo again as the disease progresses, despite constant blood work monitoring, appointments with specialists, and religious prescription taking.  In my first three months of treatment my TSH ranged from 0.0089 to 55.38.  I hate rollercoasters, and the Hashi’s rollercoaster is the worst of all.
  2. When a person has one autoimmune disorder, they are statistically more likely to develop another.  Now, there’s no guarantee, of course.  The odds are still in your favor that Hashi’s will be your only complaint, but call me crazy for wanting to have documented in all my medical charts that I may be prone to develop additional disorders.  (And, in fact, I did.  When my fingers started turning blue in response to stress about 10 months after my Hashi’s diagnosis it was quite easy for my endocrinologist to jump to a Raynaud’s diagnosis given my Hashi’s status.)  The other point to raise here is that, while the jury is still out on why some people develop autoimmune diseases while others don’t, there is ample evidence to demonstrate that these types of diseases do run in families.  By getting a Hashi’s diagnosis you are doing a service to your current and future family members by letting them know that they just might be more likely to fall on the bad side of these odds.  Again, there are no guarantees, but knowledge is still power.  Remember, though, that the increased risk of autoimmune disease isn’t disease specific.  Just because you have Hashi’s doesn’t mean family members will only get Hashi’s.  The wide world of all autoimmune diseases are in play.  Conversely, if you suspect Hashi’s and know, for example, your grandfather had Type 1 diabetes and your mother has Sjogren’s?  Yea, your hypo is probably caused by Hashi’s.
  3. Finally, it is totally possible to have Hashimoto’s, to have the autoimmune attack on your thyroid, but still have no symptoms, no irregular lab work, and no decrease in thyroid hormone production.  Some folks just have rockstar thyroids that are able to keep chugging along and maintaining euthyroid levels even while the immune system is pigging out on their right lobe.  But, what if the thyroid suddenly buckles under the weight?  Then you are in for a hard fall.  It’s rare to find a doctor willing to treat euthyroid patients with thyroid antibodies (heck, it’s hard to get a diagnosis of elevated antibodies when you aren’t hypothyroid) but I still feel it is worth knowing.  Even more so, as I will discuss below, when you are trying to become pregnant, experiencing infertility, or have suffered repeat miscarriages.

Even the Synthroid-lackeys got this right.  At the end of last year, a joint commission of the American Thyroid Association and the American Association of Clinical Endocrinologists issued the “Clinical Practice Guidelines for Hypothyroidism in Adults”  (link out to PDF).  Those guidelines have been heavily criticized by some in the thyroid community, not the least of which because so many of its authors receive tons of financial support from the manufacturer of the popular T4 drug Synthroid.  But, despite the controversy, one huge positive remains. The Guideline’s present a clear and convincing argument for the diagnosis and treatment of thyroid disease in women with infertility and repeat pregnancy loss.  I can’t encourage you enough to read through the entire document (and give a copy to all your doctors), but couldn’t complete this section on Hashi’s without making note of recommendation 19.2 which reads, “Treatment with L-thyroxine should be considered in women of childbearing age with normal serum TSH levels when they are pregnant or planning a pregnancy, including assisted reproduction in the immediate future, if they have or have had positive levels of serum TPOAb, particularly when there is a history of miscarriage or past history of hypothyroidism.”  So, yes, even in euthyroid patients, the link between the presence of TPO antibodies and miscarriage risk is high enough to warrant this conservative panel to recommend thyroid hormone replacement treatment for this class of women.  With a history of both elevated TPOs and 3 miscarriages (the last one an unexplained 9 wk loss after multiple strong heartbeats) I can tell you now that this is a positive and groundbreaking recommendation.

4. Comorbidities

Yes, I want more testing.  Even after my thryoid was finally regulated, I still felt like crap.  It was another 9 months before my endocrinologist ran a battery of very simple blood tests to ferret out the answers.  If you are diagnosed with thyroid disease, be aware that though returning the level of Free T4 and Free T3 to optimal ranges can alleviate a lot of symptoms, there are still other items that may not be corrected.  High on this list are hormone/vitamin absorption issues like vitamin D, vitamin B12, and iron.  When my vitamin D was finally tested in November 2011, it was barely detectable, and, though my B12 was in range it was at the very, very bottom of that range.  And, be aware, that vitamin D is another example of where there’s a wide gap between a lab’s normal reference range and “optimal.”  My lab considered anything above 26 normal, but my endocrinologist said she’s not happy unless she sees a value of at least 50.  After 6 months of over-the-counter vitamin D3 and B12 (always go sublingual for the B12), I felt like a new woman.  It’s crazy what an extreme difference such simple treatment can make.

And then there’s PCOS.  What came first the chicken or the egg?  The Hashi’s or the PCOS?  Seems like the answer to that question is still elusive, but the link between these two conditions is not to be ignored.  Recent research has suggested that years of untreated insulin resistance (a well-known effect of PCOS in many) may actually contribute to the development of Hashimoto’s.  Conversely, a 2011 study concluded that, “In this case-control study, anti-thyroid antibodies and goiter prevalence were significantly higher in PCOS patients. These data suggest that thyroid exam and evaluation of thyroid function and autoimmunity should be considered in such patients.”  So, long story short, why have one weight-increasing, brain-function decreasing, infertility-causing, hormone-screwing, doctor-misunderstanding conditions, when you could have TWO!?

5. Treatment and Meds

Pill a day and “follow the script” my ass!  As I noted above, there is a bit of a shit-storm brewing right now in the thyroid community.  It centers around the recent announcement by actress Sofia Vergara of her battle with thyroid cancer and the hypothyroidism that resulted from the surgical removal of her thyroid when she was 28.  It’s been interesting to watch this story as it developed, but from the beginning I thought we were in for it, and I’ve sadly been proven right.  Initially, I stumbled on to the announcement through the praise it was receiving.  It is never a bad thing when a famous face lends their name to a misunderstood condition.  But, upon reading several articles in which the bombshell actress discussed her condition, I immediately cringed at her remarks.  First, she paints the same rosy picture so many of my doctors did.  If I simply take a pill a day, all my pains will go away.  It was not that way for me, and it most certainly wasn’t that way for countless friends and family.  It has been nearly 2.5 years since my Hashi’s diagnosis, and I’m still in a daily battle with the condition. See my post from just earlier this week to read of my current battle with crippling fatigue, all-over body aches, and endless questions.  I’m thrilled treatment was quick and easy for Vergara, I just wish it was so for the rest of us.

Secondly, nearly each interview I read spent an inordinate amount of time focusing on Vergara’s complaint that she doesn’t get to eat for a half an hour after her Synthroid.  The HuffPost article linked to above quotes her as saying, “Usually I’m a morning person, so I want to have breakfast and immediately eat and everything, so for me this is torture!”  Really, torture?  Not being able to eat breakfast straight away is your biggest hypo problem?  Again, I wish we had it all so easy.  And, even more so, I wish she was actually remotely informed about good thyroid meds-taking practice.  Honey, you shouldn’t be eating until at least an HOUR after your medication, and even at that you should be avoiding iron and calcium for even longer.  Oh, and always take your pill with a full glass of water.

The day after her story hit the airwaves, it’s like a switch flipped in the thyroid community as global awareness kicked in that she was sharing her personal story as act 1 in her new relationship with the drug manufacturer of Synthroid, the world’s leading brand-name T4 medication.  Furthermore, the condescending title of the campaign she is now spokeswoman for?  “Follow the Script!”  Suddenly, her remarks in countless interviews made sense.  Hired to support the narrow view that thyroid disease is always easily fixed and, in the rare case when it’s not, it is the fault of the patient for not “following the [per]script[ion]” their doctor gave them, Vergara’s bemoaning her bagel-in-bed takes on a new infuriating light.  I don’t blame the actress – she’s an actress not a doctor – but I do blame the deeper systemic problems that lead to this situation in the first place.  Though it may not sound like it after all I wrote, I can tell you that there are good doctors out there, and that there most certainly are wonderful advocates and role models for those of us in the thyroid community to look up to.  Hell, if it needs to be an actress I nominate Gina Lee Nolin.  But, unfortunately, I hold out little hope that change will come.  “This is a complicated, largely misunderstood, and difficult to study disease that needs to be treated with an individualized focus and ample amounts of patience and patient involvement,” just doesn’t make that great of a marketing campaign.

Am I a traitor?  Here’s the squicky thing, though.  Now I feel complicit in all this “Follow the Script” madness because I’m actually a fairly happy Synthroid customer.  Though my amazing first endocrinologist came highly recommended due to her open-mindedness and willingness to dig deeper and prescribe many alternative thyroid medications (including both natural dessicated thyroid products like Armour and adding in T3 meds like Cytomel), we found together through a few months of trial-and-error that, at least for the time being, T4-only meds like Synthroid work pretty damn well for me.  It’s only with my latest round of labs that I’m starting to get concerned that Synthroid alone isn’t getting the job done anymore because, while my TSH and Free T4 were beautiful, suddenly my T3 is in the 30th percentile.  That, combined with my new symptoms, has me a little worried I’m in for a battle with my new endo (endo #3) if the trend continues with my next set of bloodwork.

And, not only am I happy Synthroid user, I’ve recommended it to many folks.  I always start my speeches with a, “be aware there are other options beyond Synthroid that your doctor might not tell you about,” but generally conclude with a, “try Synthroid – and only brand-name Synthroid – first, and go from there.”  See, the reason I recommend Synthroid is because I fought with my failing body for 3 months to try and regulate my thyroid hormones on generic levothyroxine, and those were quite easily the worst months of my life (honestly, even up there with the death of my mother).  The problem with generic drugs has nothing to do with the drug itself (yes, in generics, the active ingredients are always the same and that’s what usually makes a generic just as good as a brand), but instead has to do with the fact that when generic substitutions are allowed according to your prescription, that means you can get any one of a number of different generic makes each and every time you fill your prescription.  And, when you get a new script, though the active ingredients remain the same, the inactive fillers and dyes change.  These afterthought ingredients can have a HUGE impact on the way your body absorbs those all-so-important active ingredients.  So, if you are anything like me, you are left starting from scratch each and every month as your prescription comes up for renewal.  From the moment I was with an endocrinologist who allowed no substitutions for my Synthroid, my thryoid has remained regulated.  We’ve had to carefully monitor and change doses in response to new medications (especially birth control), pregnancy, and the natural progression of my disease, but once the sweet spot dose was found, I was inherently more stable on Synthroid than I ever was on generic levothyroxine.  So much more stable, that is, that I’ve learned not to balk at the ENORMOUS price difference that separates generic levo ($8 for 3 months on my insurance) and brand-name Synthroid ($70 for three months).  Though I still hate the insurance system that views all thyroid medication as equal, I’m more than happy to lay out an extra $240 a year in order to have my life back.

So, in conclusion… Taking thyroid replacement medications requires much more than mindless popping a pill a day (and the horror of having to wait to eat!).

  • DO take your medication on an empty stomach at least 1 hour before any food or drink beside water and at least 4 hours before any vitamins (especially those high in calcium and iron).
  • DO take Synthroid with a full glass of water.
  • DO take your Synthroid at approximately the same time of day every day.  (My alarm is set at 6AM every day of the week so that I can take my pill and go back to sleep for a bit on weekdays and take my pill and (hopefully) go back to sleep for a lot longer on the weekends!)
  • DO have regularly blood work monitoring (at least every 3 months in the beginning and only dropping to every 6 months when you have been nicely stable for a while).  Also go in for blood work when there have been changes to your diet, weight, or you have added new prescriptions.  Thyroid replacement medications take a full 6-8 weeks to be fully absorbed by your body (the half life of T4 is about 5-7 days and then, as discussed above, it takes even longer for much of that T4 to break down to T3).  Though we all want answers and improvement NOW, you can trust your doctor when they say there is no benefit to testing earlier than 6 weeks before any dose change.
  • DO be aware that certain prescriptions (especially estrogenic ones like many birth control pills) and goitrogenic foods (especially soy) may change the effectiveness of your current dose.  Each time I have gone back on birth control, my need for thyroid meds has gone up.  Similarly, early one when I didn’t know better I went on a soy binge while visiting a vegetarian friend.  When my regular test time rolled around a few weeks later my TSH had spiked in response.  Also iodine can be nasty for Hashi’s folks (though perhaps not for general hypo types) so watch out there too.

And, because I know we all have to live our lives, if the above are totally undoable for you, just know that these behaviors, should you do them, will more than likely result in you absorbing less than the full dose of Synthroid you are prescribed.  If you engage in a “bad” behavior, but you do so consistently, you’ll survive.  It just means that your bad behavior will be reflected in your lab results and you will more than likely wind up on a higher dose of medication than you might otherwise need.  Consistency is more important than perfection.

In Conclusion

So, believe it or not, I still have a few points in my notes that I’ve yet to cover, but we’ve hit the high points here and I want to get this out there before the weekend is fully upon us.  Mainly, I want this damn thing out of my queue seeing as I’ve been working on it in my mind and on paper for about a month now.  If you have questions about things I’ve missed or mispoken, or if you want to contribute more, I invite you to do so in the comments or by contacting me.  And, as always, take the above with a grain of salt and the knowledge I’m not a trained M.D.  (Though, that should be obvious, because had I been a trained M.D. I probably would have told you to take your pills and get out of my office!)

Happy weekend all!

Pain, pillars, ponder

I started this post this morning, but you won’t see that first draft.  It’s not relevant anymore.

For the past several days I’ve been brooding.  The pain that started flaring last month, the pain that led to my ANA test and subsequent referral to a rheumatologist, has started to hang around more often than I’d like.  It’s scaring me.  It’s hurting me.  And, it’s making me downright miserable to be around (sorry Mr. But IF!).  All-in-all I’ve spent the past week waffling between feeling sorry for myself, and being embarrassed of myself.  And, the sheer familiarity of those competing emotions, the fact that they send my mind straight back to the days before my Hashi’s diagnosis, frightens me more than words can say.  I don’t want to be someone living with chronic illnesses, always either waiting for the other shoe to drop or wondering if my pain is, in fact, as bad as I think it is.  But, when laying down to sleep evokes the fear of how badly you’ll ache when you wake, when the morning alarm is accompanied with an immediate sense of distress more often than it’s not, and when thoughts of the pain you feel occupy more and more of your time, it’s hard not to feel lost and alone.

I’m 29.  I have a painful rash on both hips.  I wake with back pain that brings tears.  I feel completely out of control of my emotions.  I spend large portions of my days on the phone with doctors, pharmacies, and insurers.  I’m 29.

When my Hashi’s was diagnosed and finally successfully treated I thought this was all behind me.  I convinced myself the pain had passed and I’d never get back there again.  When my laparoscopy last year relieved the last of my daily symptoms, I knew a new page had been turned.  My thirties were destined to be a time of good health and a time to make up for all that I lost of my twenties.  I spoke bravely about how the lessons I’d learned on this journey would arm me with the power and self-assertiveness I’d need to overcome future hurdles.  But, as the pain returns, I wonder – are those only emotions a healthy person can feel?  Had I developed a sense of amnesia about my painful past?  Did I try to rationalize it all by assigning some inherent worth to my struggles?  I have no idea.  All I do know, is that for the past two days I’ve felt everything but strong, assertive, driven, and empowered.  I’ve felt broken.  As if someone removed my new self from this body and returned to the surface the same scarred, hurting, insecure little girl that was there underneath all along.

This was, by and large, the post I wrote this morning.  Then, the world reminded me of its beauty and its cruelty.

I got a call three hours ago from a local floral shop.  I missed the call, but, upon listening to the message I heard that a delivery had been made to my house in my name.  I won’t get home from work until 10 this evening, so have no idea who they are from or what they are for, but I know they aren’t from Mr. But IF (I asked) and I know it’s not my birthday, my anniversary, my anything.  Someone sent me flowers to bring light to this suddenly dark world.  I can’t begin to express how appropriately timed that action was.  I am not alone.

I finished signing up for the Walk of Hope this weekend, and have already received two donations, and countless well wishes.  I am not alone.

Mr. But IF decided to call our insurer today to continue a battle that’s been waging since October about my consult with a new OB/GYN (like I’ll ever need one of those).  As I selfishly wrote to him, “Some days, I just want to quit the pills, quit the consults, quit the insurance battles, and do what the medical industry wants me to do and shut up, disappear, and die,” he was waging my battles.  I am not alone.

As I checked in with my IF friends on the computer, and told them of my recent hard times, they shouted words of support, encouragement, and, yes, even a few threats to my body and my doctors, from towns across the globe.  I am not alone.

When a college acquaintance, now years in to battling her own chronic and debilitating illnesses, offered me words of wisdom and support despite the vast differences in the severity of our conditions, I was humbled and honored.  And, when another acquaintance, this one formerly of my RESOLVE group, sought my advice on dealing with suspected thyroid disease in her family, I realized that I don’t just take, as it so often feels, but do give back in return.  Thank goodness I am not alone.

As my simple Tweet got “favorited” by thyroid disease royalty, I was overcome with both the geeky excitement of one who gets to shake the hand of an idol and an overwhelming sense of gratefulness that I live in an age when it’s possible for someone like me to be a single virtual step away from someone like her.  I am definitely not alone.

And, as the ESPN app on my phone alerted me to the news in Boston, and as Twitter and Facebook lit up with friends and family searching for, reporting on, and offering support to loved ones and total strangers, I was reminded that pain comes in all flavors.  Prolonged and abbreviated; expected and sudden; understandable and senseless; logical and visceral; deep and trifling.  But where there is pain, there is also often the reminder that we are not alone.

I’ve been in my own head a lot these past two days.  Though I do understand why, the events of the past 12 hours have encouraged me to remember the world outside my pain, my sorrow, my worry, my doubt.  My place in that world is most definitely worth fighting for.

What is in a name?

As I sit here this cold Monday morning, Lady Grey tea in hand, kitties at my feet, waiting for the fireplace guys to come clean the pellet stove insert in our new home, I’m doing some reminiscing.

First realization (and if you’d known me a few years a go, this would be an utter shock), life is good.  No, really, it is.  I’m married to a man I adore, and who challenges, entertains, inspires, and, yes, infuriates me every day.  In 8 years I’ve earned two advanced degrees, numerous awards, been published in a premier journal, and, just this summer, had all this hard work pay off and lead to a new wonderful position in a new town, where we bought our new (old) house, and are making our new friends.  For whatever reason, I have earned loving and loyal friends throughout all stages of my life, and I married into a large family that, while very different from my own, loved me instantly and completely.  And, yes, there is the whole “kitties & tea” thing – that certainly never hurts.

Prior to early 2011 the realities of my life on paper were much the same, but life was most definitely not good.  I hurt.  Emotionally, physically, wholly.  Years of doctors appointments – high school physicals, college health center, grad school health center, new “big girl job” PCP – had left me with the belief that the only things wrong with me were those things I was doing to myself.  As the weight piled on, I was, at best, given referrals to therapists, and, at worst, accused of sleep eating.  Now, I was never thin.  Even while dabbling with an eating disorder in late high school and early college, I still never lost.  (Probably one of the reasons I “dabbled” rather than falling completely into that hell like so many women and men before me.)  But, years of silent calorie counting and exercise kept telling me one story, while the scale told me another.  By my mid-twenties I was gaining 20-30 pounds a year with a strict diet and exercise regime.

But, said the docs, you are depressed!  I knew I was depressed, I had no doubt I was depressed, and I’d most definitely been depressed since middle school.  And, thinking about how I still managed to be depressed even when everything in my life was going so good, just made me more depressed.  When my body started aching, my mind started failing me, my chronic constipation took over my life, and my desire for sleep reached a level that only an addict jonesing for his/her next fix could appreciate, I marched my fat self back to the doctor.  Apparently, the sleep was from depression, the body aches and back pain were from my tubby self sleeping too much, the constipation could be IBS or not enough water or my obviously bad diet, and the mind was me just needing to accept I was getting older… at 25.

Then, I went off birth control.  The same birth control I had gone on at age 18 because I was sick and tired of wondering when my next period would come, and when I would next need to miss a week of school writhing in pain and vomiting on the floor as my mom encouraged me to sip warm port wine.  My first visit with Aunt Flo (or AF as the cutesy types in the online IF world call it) was when I was 11.  From 11 to 18 my cycles ranged from 30 days to 10 months between periods.  My mom trotted me into the doctor, was told I was “young” and just needed time to regulate, and brought me home defeated.  When we mentioned the extreme and crippling pain I would have whenever menses did arrive, I was told to get used to the joys of being a woman.  When one older male physician told my mom that, “If your daughter’s cramps are as bad as you say they are, then I would think you’d be happy she cycles very irregularly,” I thought she was going to choke him out right there in the exam room.  So, at 18 I learned to stop worrying and love the pill.

Trouble is, you can’t really love the pill when you want a baby.  When I quit it in 2010 to begin building our family, I was not remotely surprised when I didn’t have another period for 48 days, then 43 days, 62 days, 58 days… I was 8 months into trying for a baby, and had had 4 periods.  More problematically, my friend the basal body temperature chart told me I wasn’t even ovulating.  Back to the doctor, more recommendations to lose weight, eat right, and wait for my body to regulate.  So we waited.

We waited until one morning in February 2011 when I woke up for work, looked at my husband, didn’t know who he was or what is name was, and started to panic.  When Mr. But IF had sufficiently calmed me down, he wisely brought me a telephone to call out of work for the day.  Trouble is, as he handed me that rounded chunk of plastic, I had no clue what to do with it.  “Phone” seemed familiar, the feel of the object in my hand seemed familiar, and even the thought that this was the item one used to order pizza, connect with relatives, and snag a work-free day seemed familiar, but how to actually accomplish those things with a brick named V-tech?  Nothing doing.  Mr. But IF had me to the doctor same day.  She asked me what I thought was wrong, and I told her what I’d told her several times before.  Please check my thyroid.  I begged, tears came, and she ran the tests.

I dragged myself into work the next day, and spent the day forwarding my phone to every new office or workspace I found myself in.  (I’m convinced, by the way, that Google Voice is one of the most essential tools in my battle with the health care system.)  When the phone call came I was wonderfully alone in an office with my husband.  Our conversation went something like this,

Nurse: The doctor wants to schedule a follow-up.

Me: Ok, great, when?

Nurse: Um, now!  Today.

Me: What were my lab results?

Nurse: Um, well. <Sounds of shuffling paper> There are quite a few…

Me: TSH, all I care about is the TSH!

Her: Oh, ok.  55.38.

Me: <Tears.  Tears.  More tears.  Tears of joy at being right.  Tears of anger for being ignored for so long.  Tears of pain for all my hurts.>

For those that don’t know much about thyroid disease, you’ll likely hear a lot if you stick around here.  Suffice it to say that the normal range now recommended by the American Association of Clinical Endocrinologists is 0.3 to 3.0.  On February 8, 2011, mine was 55.38.  I wasn’t fat; I wasn’t depressed; I wasn’t a complainer.  I was sick.  Very sick.

It took another year and a miscarriage to diagnose both the PCOS that was contributing to my absent menses and the Endometriosis that was making them so unbearable.  But, in that year I benefited from the number 1 lesson I’d learned through Hashi’s.  NO ONE WILL CARE ABOUT MY HEALTH UNLESS I MAKE THEM.

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So, 1,200 words in and I guess I’m finally to the point of this post.  (I’ve mentioned I struggle with brevity, right?)  Why have I named this little corner of the Web “Not When, But IF?”

The first meaning is pretty transparent I suppose.  Infertility (IF) brings with it a loss of predictability in one’s life.  Go to any infertility support group, visit any online support forum, or talk to your friendly neighborhood infertile (you know, that friend of your mom’s cousin), and loss of control is a theme you will hear about regularly.  We don’t know when, how, or even if we will be able to build our families, and it is because of IF.

Though it isn’t a theme I’ve yet to detail here, I should mention that at every doctor’s appointment during which I brought up my absent menses and ovulation and subsequent fears of future or current infertility, I was reminded that I was young, that these things take time, and that it would happen “when the time is right.”  Not if, but when, the cheery nurses would say.  But, for 1 in 8 couples, however, that couldn’t be further from the truth.

There is also a deeper, more personal meaning to “Not When, But IF.”  I often say to my support group that I have a complicated relationship with hope.  I’m still trying to decide whether I say that because it is nice and quippy and makes me sound smart, or if it actually gets to the root of something deeper.  It’s probably a bit of both.  For better or for worse, my complicated relationship with hope has a lot to do with the fact that I loathe it as a concept for its utter laziness.  When someone tells you to hope (chipper obnoxious nurses, my well-meaning Aunt, the stranger on the chat board), it feels accusatory, dismissive, and uninformed all at once.  Had I hoped more, would my body not have killed my last baby?  How could hope have detached the endometriosis adhesions connecting my bowel to my abdomen?  I hoped so damn much that my doctors would take me seriously and test my thyroid, but that hope wasn’t fulfilled until I demanded action.

Thus, the other meaning of “Not When, But IF.”  While I pray not everyone will have the difficult path to diagnosis that I’ve had, many unfortunately will.  And to those women I say don’t wait for an eventual moment when your doctor will take you seriously.  Change will come if you educate yourself, seek out your own answers, get second, third, fourth opinions, and demand that the time for attention is not some when in the future but now.

And, lest I sound nauseatingly Type A, self-righteous, and put together, let me add that doing the above can still be absolutely overwhelming and terrifying to me.  On Friday, I learned that I’m likely in for yet another battle in this long war toward health.  Routine labs run by my endocrinologist last week now reveal a highly elevated ANA titre (1:1250 speckled pattern) that could indicate an additional autoimmune disease (Lupus, Sjogren’s, Scleroderma, and mixed connective tissue disease being the most likely culprits), could be the lingering effects of my immune system killing my last baby, or could be absolutely nothing at all.  But, until I find out, I’m stuck sitting here, wondering when and if I’ll ever get my answers.

Birthing a blog…

… and nothing else.

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We all have our elevator stories.  We boil our lives down into quick couple-liners.  Me?  I’m a wife, I’m an archivist, I’m an academic.  I enjoy beer, football, technology, and history.  I code and I cross stitch.  I’m a displaced Pittsburgher, and a proud Pennsylvanian.

If that elevator got stuck, you might hear a little more.  I lost my mom to cancer far too young; I spent my teens over-achieving, while doubting my appearance, my sanity, and my self-worth; I married my best friend at 22; and, I’ve always wanted to be a mother.

I’m also infertile.

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At 26, my husband and I celebrated our fourth wedding anniversary, we marked 1 year in our lovely little Cape Cod home, and I had a fulfilling and challenging job.  I did it all “right,” had all my ducks in a row, and it was time for a baby.

Now, at 29 (soon 30), my arms remain empty.

***********

I often quip that I wanted a baby, but all I got were these lousy diseases.  Hashimoto’s thyroiditis, Polycystic Ovarian Syndrome (PCOS), Endometriosis, Raynaud’s, and (the world’s best named genetic mutation) MTHFR A1298C.

In three years, we’ve also had three miscarriages.  I’ve hosted a large family Thanksgiving the same week I walked into maternity triage to terminate an ectopic pregnancy, I’ve driven 12 hours in one day for a 1 hour consult with one of the world’s only Reproductive Immunologists as my third pregnancy failed, and I can compete like a pro in the infertility pain olympics.

But, I don’t want to compete in the pain olympics, and I strive to wear my infertility like a badge of honor, not shame.  These three years have brought me friendships I could never have predicted with strangers across the globe.  Women with whom I’ve cried and celebrated, and for whom I’m daily thankful.

My infertility has made me strong.  I founded a RESOLVE (The National Infertility Association) support group, I’ve raised money for infertility awareness, I’ve walked in the Walk of Hope, and I’ve written Congressmen.  From a book-smart yet reserved girl, I’ve transformed into an assertive and proactive woman.  I’ve questioned doctors and lived to tell about it!  (A feat I once thought would never be possible.)

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So, my elevator speech.  Today even the short one includes my infertility.  It’s one of the largest influences in my life, and I’m not remotely afraid of it defining me to others as it has come to define a large part of me to myself.

I’m not a mother, and I may never be.  But I can raise awareness of infertility, I can try and rear in others a willingness to speak up and fight for themselves, and I can birth this blog.  And, that’s something I’m tremendously proud of.