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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  1. WoW, that amazing how after you got your diagnosis of hypothyroidism, your symptoms disappeared. Does that also include your OCD/instrusive thought symptoms? I am just wondering as I am 5 years postpartum and I occassionally still get the crazy thoughts but at least I know how to deal with them.

    • Yup. Once I got on meds, everything cleared up. The only other time I’ve had issues with Intrusive Thoughts, I had recently started on the Nuva Ring for birth control. It was making me super tired (like, couldn’t get off the couch) so I stopped using it and voila, the IT cleared right up.

  2. poopy poopy poopy! so glad you are better but being able to identify with what you went thru, but at the good end of medical care, makes be so angry. People shouldn’t be so stupid, esp when caring for people who are SO vulnerable! Your story has extraordinary gaps where your medical care failed you. Reckon a book on failures in medical care of PP problems would be really good…just with stories like yours, so those who look after our healthcare systems can understand.

    • The idea of a book like this has occurred to me before, as has the idea of a whole series of blog posts on the issue. It’s pretty terrible and looking back, I probably could have gone after them. Especially the doctor who didn’t let me know my lab results and the nurse practitioner who didn’t bother with the screening at my postpartum checkup at 6 weeks.

      • lobbying health care planners and government is quite tricky, a book of stories is easy to remember and am sure you could also get a health care review of the contents to include with it, that at the end of each story showed the gaps, where perhaps a doctor hasn’t been well enough trained…so they can review the mandatory training to see if there is a problem there, or mine, I was not admitted to hospital the first time I presented, the hospital could have in place a system where they automatically get flagged if it is a presentation of an issue, think it is done in some cases…a failed discharge is one term…anyway…think it could be really useful…

        • Esther – Great posts. I like how you wrapped it up with your main points at the end.
          Sarah – There is a book Dancing On the Edge of Sanity – about a woman who had ppd and intrusive thoughts that were misunderstood.

          We can only keep sharing our stories and raising awareness.

  3. MakingSense says:

    I’m four months postpartum with my third. I was diagnosed with ppd with my first. As a military wife, having dealt with the system before during my first ppd experience. I hesitate to seek help again. Not only are the medical “professionals” clueless. Any mental health issues seem to be frowned upon in the military. Coming out with my current struggles, will just add to the already stressful life we live as a military family.