Misdiagnosis and Missed Diagnosis: Part 2

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Trigger Warning: This is part 2 of a 2 part story (part 1 can be read here) of my misdiagnosis and missed diagnosis after giving birth in 2009. This post contains some references and details about Postpartum OCD, Intrusive Thoughts, miscarriage, and D&C. If you are feeling particularly vulnerable and prone to triggers, you may want to avoid this post until a later time. 

After I was discharged from my second hospitalization, I still hadn’t been able to get in to see the psychiatrist and ended up at the ER because I was out of Lexapro and had no more refills. Since TriCare doesn’t cover Lexapro on the formulary, I was switched to Celexa (the generic version) and told to keep trying to find a doctor who could see me. I called various doctors and they either weren’t accepting new patients, didn’t have any openings, or in one case, “Refused to take me on” and wouldn’t explain why. Let me tell you, this didn’t make me feel any better.

I went in to see my PCP (Primary Care Physician) to get my Celexa refilled and while I was there, he ordered a lab test to have my thyroid levels checked. I never heard anything back so when I returned to get another refill ordered, I asked the nurse about the results. She looked it up and said “Oh yes, it’s abnormal, he’ll need to talk to you about that”. When the doctor came in, I asked him about it and he said “We’ll take a look at that after we get your meds taken care of”. He never looked at my lab results and left without saying anything.

At the end of November, the day after Thanksgiving, my husband, daughter, and myself were in a car wreck. I was driving and we rearended another vehicle. I had a nasty case of whiplash and a concussion, my husband broke his ankle, and our daughter’s car seat did it’s job and she wasn’t even sore. I was given a small amount of painkillers to help with the whiplash, but the whiplash persisted past the medication. I went back to the medical clinic and saw a different doctor. While I was there, I mentioned the thyroid labs that had been done and that I was curious to know what the results were. She took a look and hit the roof, saying that my thyroid results were WAY outside normal limits. She wanted to do a re-test since it had been months since the last test, so she put in a lab to recheck my thyroid levels and put a rush on it, promising to call me back to let me know what the results were.

In less than 24 hours, I got a call back from her nurse telling me that I definitely had hypothyroidism and could I come in that day to see the doctor so she could talk to me about the condition and get me started on medication, and let me know how it would all be handled moving forwards. I was at the hospital with my husband in surgery having his ankle repaired, so I had to wait a couple of days but they got me in ASAP. The numbers on my lab results were extremely bad and I’m surprised my symptoms weren’t worse. I promptly switched doctors so that this “new” doctor was my primary and I refused to ever see the other doctor again. In hindsight, I should have filed ICE Complaints on both him and the Nurse Practitioner who ignored my Edinburgh Scale at my 6 week postpartum check up, but hindsight is 20-20 and all that.

The new doctor informed me that hypothyroidism can be caused by pregnancy. It often clears up, but in some cases it just sticks around. I was started on the lowest dose of Levothyroxine, 25 mcg, and had my thyroid levels checked again in a week or two. The repeat lab showed that my thyroid levels were improving but I needed a slightly higher dose so I was bumped up to taking 50 mcg of the Levothyroxine, and that turned out to be my magic dose. After 3 months of Levothyroxine, my PPMD symptoms were totally cleared up and I was able to wean off of the Celexa, Ativan, and Ambien. I had finally found a therapist to see, and she had me come in a little more often until we were sure that I wasn’t going to have a recurrence of symptoms but soon I was able to stop seeing her as well.

It’s been 4 ½ years since my hypothyroidism was diagnosed and 50 mcg of Levothyroxine has managed my condition ever since. Normal protocol is to have my thyroid levels checked once a year, but when I’m pregnant my levels are checked once each trimester. Even with the pregnancies, the same dose of Levothyroxine has done me right and I haven’t had the same issues, even through 3 pregnancies, one of which was as a Gestational Surrogate and ended at 12 weeks with a D&C for a missed miscarriage.

There are several morals to my story. One is that we desperately need better availability of mental health care, both inpatient and outpatient. I should not have had as much trouble finding a doctor and therapist to see me as I did, nor should I have needed to wait for a month or longer to have an intake appointment after inpatient treatment. The second moral of the story is that medical professionals need to have better training on the difference between suicidal/homicidal ideations and intrusive thoughts and between the various forms of PPMD. Screening on intake (including arrival at the ER) should include noting the differences. There also needs to be better availability of treatment options for postpartum mothers. Being put in a general hospital wing wasn’t that helpful. People who are recovering from substance abuse and addiction aren’t going through the same thing and we just weren’t able to really understand or offer much helpful advice to each other because the situations are so totally different.

The biggest lesson in this story is to be your own advocate. Don’t let medical professionals shirk on their jobs, don’t let them overlook symptoms and cries for help, definitely don’t let them leave an appointment without going over your lab results. Don’t let them rush off without giving you the attention and help that you need. This is not “causing trouble”, this is asking them to do their job. You are your own best advocate.

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Misdiagnosis and Missed Diagnosis: Part 1

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Trigger Warning: This is part 1 of a 2 part story of my misdiagnosis and missed diagnosis after giving birth in 2009. This post contains some references and details about Postpartum OCD and Intrusive Thoughts. If you are feeling particularly vulnerable and prone to triggers, you may want to avoid this post until a later time. 

In July of 2009, 3 months after having my first baby, I finally admitted that all was not well in my world. For 3 months, I had been falling deeper and deeper into a spiral of awful. Sometimes I felt indescribably angry. Sometimes I felt a deep sense of sadness and despair and would just cry and cry and cry, or maybe I’d be about to get out of the car in the parking lot at the store and suddenly burst into tears and not even know why. Sometimes I felt completely numb; I would just sit in my rocking chair holding my beautiful little girl, staring off into space, not really thinking or feeling anything at all other than blankness and emptiness. The worst of all was pictures and thoughts that flashed unbidden into my mind. Thoughts and pictures of dropping or throwing my daughter down the stairs. It terrified me and I would actually cancel appointments if I was upstairs because I didn’t want to carry my child on or near the stairs and those pictures and thoughts become reality. As soon as they entered my mind I would chase them away and hug my baby a little closer and pray “God, what’s happening? Please forgive me and make this go away”. I had no idea what was wrong with me.

At my 6 week Postpartum check up at the Wilford Hall Medical Center OB/GYN clinic, I filled out the  Edinburgh Postnatal Depression Scale questionnaire that I was handed. My answers clearly indicated that I needed further screening but the Nurse Practitioner who saw me just put it to the side without saying anything and never really asked how I was feeling, so I figured that what I was experiencing must be normal (news flash: it wasn’t). Things kept getting worse until eventually, one night in July, I found myself standing at the top of the stairs while everyone else was asleep thinking that everyone else would be so much better off without me if I threw myself down the stairs. I walked away and started to go to bed and then thought that it would be easy to take a massive amount of the painkillers my husband had left over from ankle surgery and just go to sleep and not wake up. I called the chaplain and he met me at the Emergency Room.

I was diagnosed with Postpartum Depression and transferred to a psychiatric facility in San Antonio, since WHMC (the military hospital on Lackland Air Force Base) only admitted service members for inpatient treatment of mental health issues, dependents automatically got referred out. I was breastfeeding my baby and didn’t want to have to stop, so we tried going the medication-free route first with talk therapy, both individual and group. We quickly realized that it wasn’t making enough of a difference, so on to medication it was.

During this time, one of the biggest questions asked of me was “Do you have thoughts of harming or killing yourself or others?”. I answered yes. Partly because I had found myself on the brink of attempting to commit suicide, but also partly because of the thoughts I had been experiencing. I later found out that the thoughts and images that shoved their way uninvited into my mind were Intrusive Thoughts, one of the classic and tell-tale symptoms of Postpartum Obsessive-Compulsive Disorder. I didn’t know, at the time, that there was a difference between suicidal/homicidal ideations and intrusive thoughts, or that there was a whole spectrum of Postpartum Mod and Anxiety Disorders, I thought it was just all part of Postpartum Depression. Unfortunately, it seems that none of the staff caring for me at either of the hospitals knew this either, and I was diagnosed as simply Postpartum Depression. This is one of the things that I eventually hope to see changed: to see better education for medical professionals making them aware of the differences between types of symptoms and the various PPMD.

It only took a few days after starting medication (Lexapro) before I started to feel better. Before starting medication, my mom and my husband had come to visit me at the hospital and when my daughter started to cry, it was a noticeable trigger. My mom and husband had to keep the baby up front and switch off who had her and who was visiting with me. After starting meds, I was able to cope better when she started to fuss, I started to open up a little in therapy instead of sitting huddled up in the corner unable to speak without crying. After a little over a week in the hospital, I was sent home with prescriptions for Lexapro to manage my symptoms on a daily basis, Ativan for sudden anxiety attacks, and Ambien to help me sleep at night. I was also given an appointment to see a psychiatrist outside of the hospital.

When I went to my first appointment it was a total disaster. I ended up having to reschedule after I had been there for a couple of hours and still not been seen, because I had to get home since my babysitter had to leave. They weren’t able to reschedule me for another month or so out. I ended up back in the hospital a month after being discharged due to a recurrence of my symptoms (again, the intrusive thoughts that I didn’t know much about and didn’t know how to manage), and had my medication dosage adjusted. Thankfully, I only had to stay for about a week again and was able to go back home.

To be continued tomorrow…

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How My Doctors Missed My Antenatal Anxiety

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antidepressants pregnancyI was in my first trimester of my first pregnancy when antenatal anxiety washed over me like the tide, insidious and unstoppable.  We were living on our own in the midwest at the time, and the loneliness was crushing.  I compensated for my irrational worries by donning a brave face and making light of my anxiety, to both friends and my doctors, and I assumed all newly pregnant women felt the same trepidation and slight panic I was suppressing.

I was 8 weeks pregnant when my OB called me into her office.  My fears and worries were suddenly compounded by a previously-undiagnosed kidney disease.  A giant mass in my abdomen.  And they had no idea what it was.  I taciturnly absorbed all the doctor said and then politely asked for a few moments alone.  When the door shut behind her, something in me broke.  I walked out of there a shadow of myself.  The next 6 months brought a multitude of diagnoses.  I was ultrasounded and MRIed (twice).  I met with several surgeons and had a cathertized void test done.  There were very few cases of pregnant women with my eventual diagnosis of severe unilateral hydronephrosis with 1% kidney function, and so few doctors could tell me exactly what to expect or how it would impact my pregnancy.  And that scared me to death.

Six months into my pregnancy, we moved to the North East.  My need for my family (who had moved up to the Boston area a few years before) outweighed my terror at the prospect of moving, but leading up to moving day, I had increased symptoms of panic attack.  I refused to drive while house hunting, irrationally fearful of the alien traffic patterns of our new-home-to-be.  I fought back waves of nausea at each apartment-hunting appointment, instead playing the part of the happy, expectant couple.  The night before our final flight out of the midwest, I became convinced I had a blood clot in my right leg – and the resulting (unnecessary) hospital trip ended in a 2am leg ultrasound for me and a busted blood vessel in my husband’s eye from the stress.  My husband tells me that when I fainted from panic on the 4 hour flight to Boston the next day, he took special notice of the halfway mark in the flight.  “At least there was no turning back,” he says, only half-jokingly.

Unfortunately, arriving in Boston alleviated the anxiety only temporarily.  As I neared the end of my pregnancy, I began having irrational, intrusive thoughts about my husband leaving me.  “He’s only staying until the baby is born,” the lies whispered, “he never wanted a baby anyway.”  I became increasingly irritable and emotional, and finally suffered enough to mention it to my OB, a high-risk, high-profile doctor at Massachusetts General Hospital.  With my mother in the room, I explained my heart palpitations and my trouble breathing.  I outlined my mood swings and my panic attacks.  It took every ounce of courage in my body to admit that I was struggling.

In return, she told me to “stop worrying.  Pregnancy is an emotional time.”

That was it.  We moved on to belly measurements and discussions of pain management during labor.

With only two sentences, she had me doubting my need for help. I suddenly “just wasn’t trying hard enough.”  And I believed her.

Throughout the course of my first pregnancy, I saw 5 different OBs, 3 surgeons, 2 primary care physicians, and a myriad of nurses and techs.  None of them EVER asked about my emotional well-being, and when I did speak up for myself?  I was ignored.  Dismissed.  And the thing that angers me the most is that MGH has a world-renouned Center for Women’s Health, run in part by the incomparable Dr. Marlene Freeman, an expert in the field of pre and post-natal mood and anxiety disorders.  Sitting in my OB’s office, I was one elevator ride away from help.

Instead, it took me 5 months after my daughter was born – five months of intrusive thoughts about shaking my baby or letting her slip in the bath tub (I would like to emphasize here that intrusive thoughts are distinguished from psychosis by a mother’s ability to recognize the thoughts as scary) – five months of obsessively folding and lining up burp rags and matching bottle tops to bottle bottoms by shape and color – five months of rage and of falling apart behind the scenes before I recognized I needed help.

It’s hard for me to think back through that time because I find myself so ANGRY.  My struggle was preventable.  Avoidable.  Not once during or after my pregnancy was I asked about my emotional well-being, and when I mentioned physical and emotional symptoms of my condition, they were ignored.  A few simple questions and an honest conversation with a trusted doctor was all it would have taken.

I want you to know that there are many wonderful doctors, psychologists, and social workers out there.  Many obstetricians and primary care physicians are well-educated and have amazing bedside manner.  But a large percentage of them are still grossly undereducated about antenatal and postpartum mood and anxiety disorders.  Advocates in the PPD community are working towards universal postpartum mental health screening, but in the meanwhile, each mama has to be her own best advocate.

  1. If you are struggling, tell the truth, the whole truth, to someone you trust.  I know how scary this is (really and truly), but it’s vital you are honest about your symptoms in order for you to get the best treatment possible.
  2. Keep telling it until you are listened to.
  3. Ask for help finding a therapist or doctor who has experience treating postpartum mood and anxiety disorders and seek support groups in your area.

You deserve to be well.  We’re here fighting with you and ready to help you find the care you need to feel like yourself again.

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Defining Recovery

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The biggest question I am asked about Postpartum OCD on a regular basis is also the one I dread the most: “Do intrusive thoughts go away?”

My heart breaks when I am asked if the thoughts go away because I know where they are – how they’re feeling. How FRUSTRATING it is to want to be with your child and not have any intrusive thoughts flit through your head as you drink in that sweet angelic baby smell in the dusk of the evening.

I know it goes away.

I know it fades.

Those asking, however, are still rocking the thoughts right along with their precious little one, and that beats me up inside.

What stays, and what is difficult for those of us who live with OCD to differentiate, are typical parental fears – the nagging fear that something might happen to your child when you’re not watching. THAT stays forever. It’s not intrusive, it’s a normal heightened awareness which comes with parenting. When you have survived or struggle with OCD, however, it is extremely difficult to keep these normal heightened awareness type thoughts from spiraling into intrusive thoughts. We constantly battle to keep them from growing into giant monsters. For some of us, it turns into a Boy Scout motto type life – always be prepared for EVERY LITTLE THING.

Recovery, at least for me, is not a cut-off date. It’s a constant involvement in awareness of my feelings, reactions, and coping methods in regard to the ever changing world around me. It’s ensuring that in addition to my daily requirements, I’m taking care of myself as well. Recovery is not a discharge notice from a hospital, nor is it the last pill swallowed at the end of a prescription. It’s not the final therapist visit nor is it uttering the words, “I’m okay.”

This is how the dictionary defines recovery:

Recovery Definition

What is recovery in the living world?

Recovery is life.

It’s living, it is moving forward with a tenacity learned in the depths of hell, a grip on enjoying all the little things and a determination to not go back into the abyss. It’s knowing that even if you do go back, you have a road map to lead you back out again.

tumblr_mtag5zve3g1st5lhmo1_1280Recovery is self-care, self-compassion, and self-respect.

It is knowing it is okay to not be okay sometimes. Recovery is living with ups and the downs. It’s getting to know yourself SO well you recognize the difference between yourself and depression/mental illness. Recovery is knowing exactly what to do when the ugly beast stirs to keep it from waking completely. It is about arming yourself with a cadre of weapons guaranteed to slay the succubus. Recovery is having a plan in place in case you start to slide down and a plan in place to celebrate even the smallest sign of progression. Recovery is seizing the day and any sliver of joy within. 

Recovery is acceptance.

It’s being okay with the tough days and providing yourself a soft place to land when they happen. It’s having a support system in place for the bleak days, one that will also be there for the good days. It’s understanding that sometimes, you’re gonna feel angry about your mental health and that’s okay. It’s learning the range of healthy and unhealthy emotions and knowing when to reach out for help as well as celebrating milestones indicating progress.

Recovery is being imperfectly perfectly you.

According to Alexander Pope, “To err is human.” Perfection is a fallacy (so is control). It is an impossibility we set up in our minds, a standard most of us will not reach. Do the best you can with what you have. There’s a special kind of joy (and peace) to be found when you let go of any expectations you, life, or anyone else may have forced upon you. When you are truly yourself, you shine.

Recovery is personal.

We cannot compare our journey to that of others. There are similarities, sure, but we each carry our own luggage and travel our own road. Our stories are as different as we are from each other. Knowing someone else has traveled a similar road helps. But it is absolutely important to remember that just because someone was at point X by a certain point on their Y timeline does not mean you will also be at point X at the same time. There are SO many variables to every story. It is impossible to compare so stop doing just that.

Recovery is…..

Your turn. What is recovery to you? Share below.

Photo Source: http://unsplash.com/post/61559907711/download-by-zwaddi

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