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!

6 thoughts on “Hashimoto’s manifesto

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