Sometimes, you just have to take the bull by the horns

I’m back!  I know I’ve been pretty absent over the past month.  Truthfully, I’m just tired.

And a lot of other things, but mostly tired.

For those of you who followed when I started my first blog, you will remember when I gained like 20 pounds in 2 months.  I’m sad to say that it seems like that’s the way I’m going again.  I’ve gained almost 15 pounds in 6 weeks.

I know, it’s not normal.  We’ve been down this road before, my friends.

The last time this happened was in 2009 and I went to my primary care physician, like I always did when this happened at 2-3 year intervals.  She referred me to another thyroid doctor who told me “you’re fine, but I’m fascinated that you have such extreme hypothyroid symptoms and don’t range in your test results”.  Thanks, bro.

He convinced me that I was just stressed out and that once I finished my dissertation, I would magically lose the 50 pounds I’d gained in graduate school.  Yes, 50 pounds.

So a few weeks ago when things started to seem strange, I panicked.  Oh, god, please don’t have this start up again.  Then, two weeks ago, I started to have EXTREME ovarian pains.  Great, cysts.  After a week of that, I saw my gyno who said that she definitely thought there was something wrong and that I needed to be seen by someone.  My fingers are so swollen, I can’t put my rings on and off.

My hair is falling out, I get 8 hours of sleep a night but I’m dozing off during the day, I am having brain fog (ask me about the flip flop incident a few weeks ago if I didn’t tell you), I’m cold all of a sudden all the time, my fingers and feet are tingling.  My face is puffing out, the corners of my eyebrows are falling out, my eyes are swollen and baggy.  I have heart palpitations.  My cholesterol is through the roof.

So I decided last week that I needed to find a doctor that may listen to me and believe me that I have a serious problem.  I have spent hours, HOURS, scouring the interwebs for people in Virginia who are forward-thinking doctors.  I am appalled by the message boards on websites that have hundreds of stories of people just like me who suffer without proper treatment.

I may be wrong, but I truly, deeply believe that there is a thyroid issue going on.  I also have two generations of women before me with thyroid issues.

So where do I start?  At the beginning.

I went back to EVMS and called to see if I could get in with the first doctor that I saw who believed I have Hashimoto’s.   This is an autoimmune disease that causes inflammation in your thyroid that leads to hypothyroidism.   Turns out that I went to him 10 YEARS AGO. Ten years, people!  I can’t believe I’ve been dealing with this on and off for 10 years.  No wonder my body is such a mess.

When I asked if he was still there, the receptionist said no.  I knew at that point, I needed to keep going.  I’m hoping to get my records, but that is a long shot.

Since that appointment, I have seen about 6 other doctors about this issue.  All of them say the same thing.  You are fine according to your labs, but you have classic hypothyroid symptoms.

Gee, thanks.

How about this, medical professionals?  How about you actually listen to me and treat my symptoms, rather than acting like I’m a overemotional person who is a hypochondriac?

I understand what comorbidity means in a journal article- I have a PhD and I’ve pulled dozens of research papers about hypothyroidism, including recent papers on how physicians rarely look outside of normal ranges, even though patients could benefit from treatment at low dosages.  I know that in last years national endocrinology  conference, it was determined that natural desiccated thyroid should be considered for patients who cannot convert T4 to T3 using traditional medications like Synthroid.  I know that there is a high rate of incident between polycystic ovarian syndrome and hypothyroidism.  I’m not stupid, I’m not Googling on WebMD, and I’m not misinformed.

What I am is a little mad.

In my search, I’ve scoured message boards for recommendations from people and it’s a lot of the same:

  1. I’m desperate to find a doctor who won’t make me feel worthless when I tell him or her that I don’t think my labs are accurate
  2. Does anyone know of a doctor who will test for T3 and not just the normal TSH panel?
  3. How can I find a doctor who prescribes natural diseccated thyroid?
  4. Why won’t anyone take me seriously?

What the hell, medical community???

So here is what I found.  It is nearly IMPOSSIBLE to find the holy grail endocrinologist who is willing to look outside the box, who is willing to do the unusual tests, who is willing to consider symptoms outside of the “normal” range on the lab tests.  In Virginia, I was able to find less than 12 doctors.  I called three who are within a 4 hour drive from me and two are not accepting any more patients and one wants me to have a referral from my PCP.

The rest are integrative doctors who do not accept insurance.  Am I willing to spend $350 for an office visit and then countless dollars on lab work and followup visits?  Not yet, I’m desperate, but not crazy.  But I’m almost there.

I called a doctor locally who is not an endocrinologist, but gets a lot of props on the interwebs for his bedside manner and willingness to think outside of the box.  He’s not accepting new patients, I’m told.  I lied and said I had a friend refer me.  Now, all of a sudden, they are going to “try” to get me in.  This is the beginning of my criminal life.

I’m now on the waiting list for two doctors in Richmond and Northern Virginia.  It will be a holiday miracle if I can get in before the new year.

After a week of this, I am hitting the wall today.  I’ve made an appointment with my primary care physician on record, whom I haven’t seen since 2009, to go and cry my eyes out and beg for her to try to treat me on her own.

This is my new quest.  I’m determined.

Feel like getting angry about how women are treated with thyroid disorders?  Yes, I said women.  There are men, of course, but go on these boards and take a look.  It’s mostly women who are struggling.

You’ll find sick, desperate people who are tired of being tired.  Tired of being dismissed.  Tired of feeling like they have to get a MD themselves to advocate for better treatment.  I’m shocked by the level of expertise these college students, mothers, sisters, wives, and friends have acquired in their own quest for better medical care.

Buckle up, people.  It’s about to get real up in here.

You are about to get a sideline seat in my quest for proper medical care and treatment.



One thought on “Sometimes, you just have to take the bull by the horns

  1. Anonymous says:

    confer with Katie Jenkins. You need to find a naturopath. We have different levels that we look at for hormones and precursors. Virginia doesn’t recognize naturopaths but I think North Carolina does so you may actually have to go south not north. that should help. you will probably have to pay out of pocket but if they can solve the issue isn’t that better? in the mean time, love your kale, but massage it or steam it first. try dry brushing to help with the edema, i thnk you went gluten free a while ago, but make sure you are really gluten free. They put it in everything. Also try going yeast free. Again it is in everything, even tomato sauce and paste.

    I can look some more stuff up at home when I get there. In the meantime you can also see the doctor that takes care of us: Peter Schoeb. he has offices in VA beach and in Tempe AZ. He is hte one that took care of Steven when he was fighting the fibromyalgia, and after the bike accident.

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