This is the Most Missed Diagnosis and It Could Be Ruining Your Life

This is the Most Missed Diagnosis and It Could Be Ruining Your Life July 16, 2017

dealing with hypothyroidismI wasn’t suicidal, but death didn’t sound so bad. What was wrong with me? Tired. Depressed. A 40 lb.-weight gain in a year.

Something was going on. I requested a copy of my blood work, did some research, then asked my doctor for a referral.

He wasn’t happy.

“Doctors are human, too,” he sighed, avoiding eye contact. He scratched out a script for the sixth antidepressant in about four years. He had no problem giving me antidepressants. But a referral? Out of the question. I insisted.

“When a doctor sees you’re on antidepressants,” he continued,  “he’s not going to take you seriously. I mean, you’re on an antidepressant. We’re human.” He handed me the script and the referral and left the room.

I was overwhelmed, exhausted. For years, I’d complained of:

  • depression
  • dry, brittle heels
  • hair loss
  • weight gain
  • dry, brittle nails
  • insomnia
  • achy joints
  • fatigue

And my doctor had handed me script after script for sleeping pills and anti-depressants. His reason for the fatigue: children. His reason for the weight gain: age. If I’d accepted that, I might’ve been dead, divorced or both by 50. I was that miserable.

He, like so many other doctors, didn’t connect the dots and realize I’d been complaining of common hypothyroidism symptoms. My blood work “said” my hormone levels were “within the normal range,” so my doctor said my thyroid was normal.

I was convinced, even if my doctor wasn’t, my body needed more thyroid hormone than it was putting out. Each of us has a hormone level that’s ideal for us. Just because I was “within the normal range” didn’t mean I was okay. He’d been treating my lab results–not me for years and didn’t want to give me a referral . . .  until I insisted.

Hypothyroidism affects millions of people worldwide, mostly women. And, yet it’s one of the most unrecognized and misdiagnosed problems in the world.

The thyroid is a butterfly-shaped gland that sits below your Adam’s apple, about 8 inches below your nose. According to the American Thyroid Association, when your thyroid hormone levels are too low, you can suffer from symptoms that wreak havoc on every aspect of your life.

I took the referral, saw an endocrinologist, and realized my doctor was right. The endocrinologist didn’t take me seriously after I told him I was on an antidepressant.

I had a family history and symptoms, but after I said the “a” word, he switched gears and said my symptoms weren’t my thyroid and could be attributed to a lot of things. I was a walking poster child for hypothyroidism.

But, he insisted “No self-respecting endocrinologist in the world would prescribe thyroid hormone with your numbers.” He shamed me into going away. I did. My life continued to crumble: my marriage, parenting, relationships. I felt like a failure.

Maybe I was little wacky because I went back to my same primary care doc a few months later complaining of the same symptoms. He was ready for me. Armed with the endocrinologist’s report, he handed me a referral for a psychiatrist, whom he said could prescribe an anti-psychotic.

I would’ve reached for his throat, if I’d had the energy. Instead, I walked out of the office near tears, doubting myself and feeling defeated.

I eventually found a new doc. I moped in and started with the usual drone of symptoms. Thank God my hair was falling out. When she moved in to examine me, my hair caught her attention. Short broken-off strands were sprinkled all over the exam table, my shoulders and my back.

She sent me to a different endocrinologist, who after looking at my lab results, reluctantly (because of my numbers) agreed to try a three-month trial of thyroid hormone.

In three months, my thyroid numbers had inched up to the middle of the range, I felt good and had gotten my groove back. I’d had a treatable condition, which took five years to diagnose because my doctor refused to look outside of the scope of common practices.

Like many, I trusted my doctors without question. It never occurred to me they might not be fully versed in hypothyroidism, its symptoms and causes. Don’t get me wrong. I have the utmost respect for the medical profession. But, I’ve learned I’ve got to question my doctors, get second opinions and most importantly, never give up if I believe I’ve got a legitimate health issue. Doctors are fallible.

After all, they’re human, too.

How have you had trouble getting a diagnosis?

Always trying to be real,

 

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52 responses to “This is the Most Missed Diagnosis and It Could Be Ruining Your Life”

  1. Sheila,
    This post was fabulous! I am going to share; women need to read this. I am so sorry you had to go through this but thrilled you took things into your own hands and got the help you need.

    As you know, I do a ton of work in the mental health field, but you have reminded me one must rule out physical illness first.

    You are so correct; Doctors can be wrong. It is so important when we do not feel comfortable with a suggestion that we check it out. God gave us intuition, and he speaks we just have to listen.

  2. Your story is interesting and, sadly, too common from what I’ve read. And you’re right, doctors are human so they do make mistakes, but it pains me to think how quickly they whip out the Rx pad for antidepressants. I’m glad you persisted in seeking help and that you finally got it and are better now.
    Thank you for sharing, and have a great week!

  3. Your post inspires me to ask the hard questions! I’m also going to do my research on hypothyroidism. I’d love to know more. Although your journey has not been easy, I believe your story will motivate many of us to ask the hard questions and, never allow anyone to minimize their thoughts! Thank you for sharing!

  4. I have been complaining for years about similar symptoms and had my thyroid checked numerous times, although not prescribed any meds, I know there is a problem. Thanks for posting as I need to make an appointment for another physical. #MMBH

  5. Antionette,
    Sometimes they just don’t know. My numbers never went outside the “normal” range. They were on the lower side of normal, as in barely in the range. I think you are wise to check it out.

  6. Things like this happen entirely too often. I, like you, used to trust my doctor that he/she had my best interests at heart. When my mom died, I started digging and my findings were unfathomable. The big red flag for me was the bullying that goes on in the medical profession. No, not bullying patients (which happens all too often), but the bullying of physicians by their medical associations, licensing agencies, pharmaceutical industry, insurance companies, etc. No physician will DARE to step out of the “generally accepted” practices for fear of losing his license, losing his insurance, or worse … ending up dead (easy enough to google names and find obits – sorry snopes, you’re lying). I don’t doubt that when these people went to medical school that they sincerely wanted to help people, they are good people at heart, but I don’t trust them. They are educated at fancy medical schools that are bought and paid for by the pharmaceutical industry. They aren’t taught to heal, they are taught to treat symptoms.

    I suffered with severe physical and mental symptoms for 7+ years. There was no apparent catalyst to bring on the symptoms, they just appeared one day. After trying what felt like every anti-depressant and every anti-psychotic drug available to no avail, I had all but given up on ever enjoying my life again. One day, I read a totally unrelated article on a health website and the light bulb went on. I pulled out my copies of my medical records and started looking back at dates. Lo and behold, my symptoms had started within DAYS of receiving an IUD. Nobody would even admit this was a POSSIBLE side effect, much less confirm it. Finally, I called a new doctor, didn’t offer ANY of my medical background information, and requested that the offending IUD be removed. The day after that appointment, literally within 24 hours, I felt better. Within 2 weeks, I was back to my old self.

    Doctors and scientists look upon health websites with much disdain and treat patients who take an active role in their own healthcare more like a cancer than a patient. I don’t care what they think. What I learn on my own through my own research works for me, and medical care absolutely failed. Everybody needs to take a much more active role in their own healthcare.

  7. Thank you for sharing your story, Trixie. I think it will benefit many. I’m sorry it took so long to figure out the issue.

  8. I had to do this to get my Mito diagnosis. I know so many women who don’t know or feel empowered enough to question their doctor. My dad is a retired doctor. I always say, “they are humans. I swear! I’ve seen one walking around the house in his boxers.” It gets a laugh but humanizes them too. Get your doc off of the pedestal and ask questions!

    Soooooo important. Thanks Sheila!

  9. I haven’t trusted my doctors without question in years. They have made several mistakes concerning myself and a couple of my children. I’ve had many of the same complaints as you, and they always send me to the lab for thyroid test, only to tell me that my numbers are within normal range. I’ve had to compensate with a strict diet.

  10. Doctors today often seem to take the easy and safest way out. They are afraid of malpractice suits. I had a fall and hit the back of my head. Doctors took a cat scan and found a barely perceptible fracture that would heal itself. They then proceeded with every test imaginable to try to find a reason for my flu like symptoms. A neurologist suggested exploratory surgery! My husband insisted that they test for low sodium. Indeed that was the problem; after an IV my levels went straight up and I felt much better. I had to threaten to discharge myself to get out of the hospital. That was five years ago, and I have had no problems since.

  11. I hear ya. I have these symptoms too. I gained 15 pounds this year. My mom has hypothyroidism. But my numbers are ok. Doctors just tell me arthritis and send me on.

  12. I think you’re wise to investigate yourself. I have the utmost respect for doctors. They go through a lot of hard work and put in a lot of hours. It’s no small achievement. They are human. I think the best of both worlds is someone who takes patient concerns into account along with lab results.

  13. I’ve had a misdiagnosis. There was a time when I was greatly fatigued and went through a battery of tests including the thyroid test. No diagnosis could be made and I was never prescribed an antidepressant.
    This made me more vigilant about my health and taking care of me. Some things had to go….I let things fall off the plate and let others pick up the slack. I increased exercise and rest; found better health supplements and then menopause showed up. I’m so grateful for this stage of life – kids are grown, I have energy, and I’ve created good self care habits.

    Stopping by from #DreamTogether linkup

  14. Great post! I am glad they finally found the answer. My mother has this, and she didn’t get diagnosed until she had lost weight, hai,r and was too weak to do anything. They all thought she was stressed as well. She is doing much better. I love the fact that you mentioned they are human. It is true. Glad all is well. Thank you for this post!

  15. Nylse,
    I am sure healthy habits help. Many thyroid symptoms mimic menopause. Because the symptoms mimic so many things, hypothyroidism is so hard to diagnose. Lot of docs won’t even look for it if your numbers are in the “range.” I am happy to hear you are living a healthy life with excellent self-care habits.

  16. Finding the right doctor makes all the difference – it took me until my early 40’s to find one. Although my numbers were in the “normal” range my doctor saw many of the symptoms and was willing to give me a prescription. I’m glad you finally found someone to help you!

  17. I found this post on Facebook after a friend commented on someone’s share of it. I’ve had a slightly different but relate-able path, and want to encourage anyone who comes along this to keep digging even further than just leaving it at hypothyroidism. I had a similar journey, except that I spent about 9 years taking thyroid hormone supplement that masked some, but not all symptoms. Please don’t stop here in questioning your doctor! Hypothyroidism is a symptom, not a root cause! In most cases it’s an autoimmune issue, and your hormone supplements will only mask the symptom. An autoimmune condition can possibly be treated with diet! Look into autoimmune paleo protocol (AIP).

    Like I said, I spent 9 years taking the hormone supplement continuing to fight with other symptoms (weight gain, psoriasis, sluggishness, trouble sleeping, etc). Switching to a mostly paleo diet has helped me regain energy and given me some of that clarity back. I’m also ready to cross the 50lbs lost mark since learning about this in early March. It can make a remarkable difference, and I’d encourage you to keep digging deeper!

  18. Thank you for sharing , Wyatt. I think what you are saying is right on. Diet makes a huge difference. And, I do believe there can be something else going on. I am thankful people are sharing their stories. I think we can learn because no one knows your exact symptoms except you. Sometimes it takes information from many sources to put the whole picture together.

  19. Thanks for sharing so openly Sheila. It is so important to be your own advocate and persevere towards the right diagnosis, care and treatment. I’m so glad you did! Thanks for linking up today!

  20. Good for you for forging ahead until you found a doctor who was willing to venture beyond tests. Years ago I went to a doctor who gave me a prescription for thyroid even though my results were within normal range. She told me that sometimes women going through menopause needed an extra boost even though the tests are normal.

    Hope all goes will for you.
    The View from the Top of the Ladder

  21. Stopping by from Tuesday Talk. Thank you for sharing your story. XOXO I’m glad you finally got some answers! I will definitely keep those symptoms in mind!

  22. Hi Sheila, I just link-ed up next to you at -A Wise Woman and saw your post. For years I suffered with Endometriosis in silence because no doctor would take me seriously. I felt so many of the things you described. I’m sorry we, and so many other women face this. But, I do believe that God uses our greatest pain to help others. Thank you for your honesty and sharing, it truly helps others who are going through similar situations not to feel alone. Heidi

  23. Thanks for sharing this, Sheila. You are SO right about having the correct doctor. I was a mess after my first child and first doctor did blood work and all came back “normal”…even the thyroid. After finding a new doctor and explaining all the symptoms, she said, “I bet you have Hashimoto Thyroid Disease”, which is only determined by a different set of blood tests–antibody levels. Sure enough, my numbers were through the roof. I’ve been on Synthroid for 22 years now and feel great. Since my diagnosis, I’ve had 5 friends over the years…5…who have described similar symptoms to me, all saying their doctor could find “nothing wrong”. I recommended each one of them insist on having antibody levels in blood checked. Wouldn’t you know every single one of them, all 5, ended up having Hashimoto’s! It’s amazing to me how these doctors overlook. We always have to be our own advocate.
    Blessings to you!

  24. Blessings to you. Shelby, for helping your friends. Same story over and over. People do not know the right questions to ask. Thanks for sharing your story to raise awareness.

  25. I appreciate you, Heidi, and so many others who have shared their stories. Unfortunately, women’s health issues fall under the radar many times. Thanks for your openness and willingness to share.

  26. I am so sorry for all that you had to go through until you received proper care. I know your journey will inspire many to ask those hard questions until they get the help they need. Blessings!

  27. Prayers for someone in my life suffering with similar symptoms. Your story prompted me to encourage her to test for this.

  28. It took me several years to get diagnosed, too. Weight gain. Hair falling out. So, so tired. Freezing all the time. What happened with me, finally, is, I needed a D&C and had to get a pre operative exam. My PA wasn’t available to examine me so a female doctor from the same practice did. I sat on the table, shivering from cold, on a hot summer day. She immediately looked at me, asked some questions, and started to palpitate my neck. Then she said “I think you have a problem with your thyroid. After your D&C, I’d like you to get this bloodwork.” The bloodwork she ordered, which my PA never had put me in for, diagnosed me. (She also found nodules, benign, that he somehow never found). The thyroid medicine was a lifesaver for me.

  29. This is filled with so much TRUTH! My doctor – who is about to be replaced is doing the same thing with my health issues. I feel he has lost his mojo or love for his career. Maybe just burnt out but this is my LIFE we are talking about! I am so glad you finally got the RIGHT diagnosis! My mother suffered from this for years before getting the right diagnosis as well.

  30. It is amazing the difference the medication makes. You feel like you’ve come to life again. I am so happy someone finally got it figured out. I am amazed at how frequently a thyroid diagnosis is missed.