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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The emotional aftermath of pregnancy loss

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Trigger Warning: pregnancy loss, D&C

If you are feeling particularly vulnerable/sensitive, you may want to skip this post or may need to stop reading part way through. If that’s the case, here’s a video of pandas playing on a slide. Actually, even if that’s not the case you may still want to watch the video because it’s just that darned cute.

Over the last year, one of the things I’ve been doing is going through the process of becoming a Gestational Surrogate. In January of this year, we did an IVF transfer of 2 frozen embryos. Both stuck and I was pregnant with twins. Unfortunately, at 11w2d pregnant, an ultrasound showed that both babies had passed a couple of weeks prior. At the end of an agonizing and emotionally tortuous week, I ended up with a D&C. I won’t drag you through the whole story (you can read it here if you’re interested, at my surrogacy blog) but today I want to focus on some of the emotional aftermath of pregnancy loss and the risk of PPMD.

When I gave birth to my 2nd and 3rd children, I knew to expect some up and down, some hormonal changes. I know about the up’s and down’s and what to watch out for that might signal that I was dealing with PPMD and not “just” the baby blues. For some reason, it didn’t occur to me that I might go through the exact same process after miscarrying, but with added twists and turns to the roller coaster given the grief I was dealing with at the same time. It took my mom telling me “Yes, you need to be on the lookout for PPD, but keep in mind that your hormones are going through the same type of adjustments that they would with a normal postpartum period”.

It hadn’t even occurred to me that a pregnancy ending means my hormone levels fluctuating, regardless of how/why the pregnancy ended. Once I realized that it was normal and natural (for my situation), it was a bit of a relief and helped me feel a little less antsy. I was able to take some of that energy I had been directing towards “OMG I feel *whatever* is this PPMD?” and direct it towards processing my grief. It was a grief I wasn’t prepared for, because even though I went into the surrogacy knowing “Anything could happen”, I’ve never had a miscarriage before and especially once I got to that 8w5d u/s with two healthy babies and heartbeats, I felt like I was “safe”. That feeling of safety was an illusion; I realized that in about .025 seconds, but it still made it that much harder to accept the miscarriage.

I was fortunate, in that I didn’t suffer from PPMD after the miscarriage. But for too many women, that’s not the case. It has been more difficult than I can put into words to deal with the grief from the miscarriage; I can’t imagine if that had been compounded by PPMD setting in to rub salt in an open wound. In 2012, Psychology Today posted an article titled “Pregnancy Loss and Depression: Understanding the trauma of fetal loss” by Karen Kleiman, MSW, LCSW. In this article, Karen says

A study from the Journal of the American Medical Association (JAMA, 1997) concluded that major depressive disorders are more common in women who suffer a miscarriage than in those who have not been pregnant. Furthermore, they suggest that women who suffer miscarriages should be monitored in the first weeks after reproductive loss, particularly those who are childless or who have history of major depressive disorder. Among miscarrying women with a history of prior major depression, half experience a recurrence. It is also interesting to note that this risk did not vary significantly by maternal age, by time of gestation, or attitude toward pregnancy.”.

This is information that all medical professionals need to be very aware of and disseminate appropriately to their patients dealing with pregnancy loss, as does everyone with a loved one dealing with loss in pregnancy.

One of the frustrating things about watching for PPMD after my miscarriage was the difficulty in distinguishing symptoms. Symptoms that I know to often be associated with PPMD were also easily attributed to my grief. Anger, feeling down, lack of appetite and interest, just wanting to sit around, crying a lot, mood swings, and more had me thinking “Is this PPMD or is it just because I’m coping with a miscarriage?”. Thankfully, before too long, everything eased up and there was no PPMD for me. I was lucky and I am grateful for that.

If you have been through a pregnancy loss, you have my deepest and most sincere sympathies. I am so sorry for what you are going through and if you need someone to talk to about it, I am here and I am more than happy to talk in the comments, on twitter, on Facebook, by email, whatever. Also please know that you are not alone. There are people who understand what you’re going through and who want to support you. There are resources out there for you. There are two websites that I personally found helpful in processing the miscarriage: The Amethyst Network and Unspoken Grief. Postpartum Progress has a couple of posts that also helped me (links here, here, and here). And last but certainly not least, let yourself grieve. Give yourself permission to grieve. No matter how early or late the loss, it is a loss. Whether it was an early miscarriage days after you got a positive pregnancy test, a stillbirth at 40 weeks, or anything else (I am definitely not setting limits, the possibilities are unfortunately broad), give yourself the time and space and permission that that you need to deal with your loss in whatever way you need to. Remember that there’s no timeline on grief and no one right way to grieve. Don’t worry about offending other people, just do what you need to do to take care of yourself. We are here for you. I am here for you.

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What if you’re not better?

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Last week was a big week here at Postpartum Progress. It was the site’s 10th anniversary, and therefore the 10th anniversary of Katherine’s start as a powerful advocate for women with postpartum depression and similar mood disorders. In celebrating that anniversary, you may have seen stories from a whole list of women who credit Katherine and her work with saving their lives and getting them to where they are today.

But what if you’re not better? What if you’re still fighting PPD?

Being exposed to a slew of stories from people who did recover and who are better while you’re not can leave you with questions of, “Why me?” Or, “Why not me? Why are they better when I’m not?”

You may feel as though you have done everything you’re supposed to and it hasn’t worked. You might wonder why it’s seemingly easy for some people but not for you. And you might look at all that celebrating and feel like giving up.

What I want you to know is this: You will get better.

What I can’t tell you is when that will happen or what will work or how you will know you’re past the worst of it.

All of us who have struggled and who can now say things like, “You saved my life” walked a long road to get there. We had good days and bad days and a glimmer of light before the darkness enveloped us again. We tried things that didn’t work and then found some that did. For some it may have been relatively easy, while others fought hard and long.

winding path through trees

None of that may be reassuring for you, I know. You might be tired of fighting. You might feel bitter that life has tossed you something that requires so much work and energy and effort to get past. Or you might just not be able to see your own glimmer of light.

You don’t have to just trust that it will eventually be okay. I guess what I want you to know is that it’s okay if you look at the happy stories and want to throw something against your screen. It’s okay to be angry that your story is not among them, at least not yet.

So keep going, dear Warrior Mom. Keep fighting. Ask those of us on the other side for help, and we’ll be waiting here with open arms when you get here and are ready to share your own success story.

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