Discussions By Condition: Medical Errors

Daughter died after multiple misdiagnosis

Posted In: Medical Errors 14 Replies
  • Posted By: Anonymous
  • March 9, 2009
  • 10:51 AM

Since 2002 at age 13 my daughter had joint pain in her hips that doctors decided were "growing pains." Later they got severe enough that sometimes she would miss school because it hurt to walk. Many x-rays later, there was still no diagnosis. In the meantime, she also began having terrible menstrual cramps and irregular periods, for which she was given a low dose birth control pill, but it didn't help. By age 16 she was having large mood swings at times but was still doing well in school and had lots of friends. By age 18 she started to believe she had a mental/personality disorder and was starting to have memory loss. At age 19 she saw a psychiatrist a couple of times but would not continue going. In the meantime she had seen doctors a few times for various things but none connected the dots. At age 19 she began to suffer constant mood swings, memory loss, insomnia, and other mental symptoms, and she died by suicide. Her autopsy found chronic lymphocytic thyroiditis (Hashimoto's disease).

Now after the loss of my daughter and discovering that this thyroid disease seems to run in families, I think I probably have the answer to a severe illness I had in 2004-2005 that a GP, 2 gastroenterologists, and a neurologist could not diagnose. In fact, the GP and 1 gastroenterologist were certain it was all in my head. None of them checked my thyroid. My main symptoms were sudden weight loss (148 lbs to 121 lbs. in 3 weeks), extreme abdominal pain, diarrhea, malabsorption, panic attacks, extreme fatigue, tremors, vision changes, and changes in consciousness. For years prior to that illness, I had experienced unexplained attacks of "hypoglycemia" at least by the symptoms, night sweats, lightheadedness, and panic attacks. Doctors told me it was anxiety, and none checked my thyroid.

Although I have not had that many problems since recovering from the illness in 2005, I will be seeing an endocrinologist next month after finding out what my daughter had. It is CRIMINAL and tragic that people should suffer like this while most doctors cannot seem to make a diagnosis of a disease that is treatable!

Reply Flag this Discussion

14 Replies:

  • I am so sorry for your loss and can fully understand your anger.I am hypothyroid myself and my brother has Hasimoto's disease. I always thought it was one of the very first tests that Doctors done, it was in my case & my brothers. Its hard to take in that this was not done as routine. Left untreated it is an awful illness, but with treatment I never looked back. As I said my brother has Hasimoto's disease & he has much more of a problem with it than i had. I just wanted to acknowledge you, and send my condolences to you & your family, its just not right or fair for the loss of your Daughter. My thoughts are with you ((hug))
    Tootsie 628 Replies Flag this Response
  • I just hope doctors read this, that's all I can hope for. Because between my daughter and I, there are a whole list of doctors out there who should be ashamed of themselves. Now my daughter is dead because they shrugged their shoulders instead of doing more tests. I'll never trust a doctor again. A computer would have done a better job. Had I put her symptoms into a database instead of asking doctors, she might be alive today.
    Anonymous 42789 Replies Flag this Response
  • I really feel for you, I wish I could say something to help you. Someone reading this someday might actually help to prevent it from happening again. again, I am so sorry for your loss.
    Tootsie 628 Replies Flag this Response
  • I too am deeply sorry for your loss. I also want to thank you for posting this and sharing your story, painful tho it may be. I am a Doctor of Oriental Medicine, and have a patient who has gone undiagnosed and who is improving with acupuncture and herbs. I am planning on making sure she has her thyroid thoroughly checked as your list of symptoms nearly match exactly. If at least one doctor looks at your post and a lightbulb goes off, then you have really made a difference. Hashimotos' used to be a rare autoimmune disease...it is becoming increasingly common. I know of at least a dozen people with this disease. I feel for you, but also please don't give up on allopathic doctors...they don't always have all the answers and don't treat chronic conditions very well IMO. But for some things like emergency surgery for example, they clearly save lives. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I am very sorry for your loss and also very upset after reading your post. I think you should write a letter to everyone of your daughter’s doctors and tell then what was wrong. I really do. The only way to prevent such an outcome in the future is to give them feed back. Otherwise they’ll never know. I am sending all my love to you. I wish I had a magic wand and bring your daughter back.
    Felsen 510 Replies Flag this Response
  • Thanks to all for your comments. Felsen, I have thought many times that I should write letters to all of my daughter's doctors about this so that maybe someday in the future the light bulb WILL go off in their heads and save someone from a lot of suffering. I am going to wait until I have my own tests done by an endocrinologist, because it is possible that letters should be sent to my own doctors, as well. Two of the doctors saw both of us. I never even heard of Hashimoto's before my daughter's autopsy results, but apparently it's not terribly rare...it's more commonly undiagnosed or misdiagnosed and often goes through periods of remission. Since I learned about it through this tragedy, I did some research that was NOT difficult and discovered that a significant percentage of people with vague, seemingly disconnected symptoms both mental and physical suffer from thyroid disorders. I am at a total loss to explain why more doctors are not commonly ordering more thyroid tests when they're stumped (and not just TSH). Clearly there ARE some doctors out there who are well informed on this! Why aren't they all???
    Anonymous 42789 Replies Flag this Response
  • Hi Wd123, It is always sad to hear of such severe consequences of misdiagnosis. I suffered 55 years of misdiagnosis until I found the answer myself with the help of an internist not blinded by a "difficult" patient with "Its All In Your Head" syndrom. As it turns out it was a lot in my head and the rest in my body. I had neurological deterioration due to severe b12 deficiencies. Hashimotos' specifically and auto-immune diseases generally have a high correlation with b12 deficiencies. From my own experience and what I've seen here is that physicians typically want to call b12 deficiency problems All In Your Head and misdiganose 95% of b12 deficiency. They can only get it right if macrocytic anemia is present and people respond to 3 tests that are not definititve. In studies basing inclusion on symptoms instead of test results typically about 2/3s of positive responders to b12 would have been excluded from the study as "not deficient" based on test results. Your daughters symptoms all are also b12 deficiency symptoms. All 3 of my children have the same deficiencies I do, as does my mother and maternal grandfather with all others unknown.http://forums.wrongdiagnosis.com/showthread.php?p=151958#post151958 Come on over the b12 forum and check out our complete list of symptoms and talk to people and see how similar we are to your daughter and perhaps yourself.
    Freddd 3576 Replies Flag this Response
  • Dear WD123,I am deeply sorry for your tragic loss. My heart goes out to you. I lost a baby two years ago because my OB/GYN ignored some symptoms I was having. She did nothing to find out the cause of those symptoms--and four days later, my baby died. I was five months into my pregnancy. Although it was crushing to me, I know it's hard to compare the loss of a fetus to the loss of child the age of your daughter. I can only imagine the devastation and pain you must be enduring.I, too, have lost my faith in doctors because so many of them just shrug off your concerns as being nothing, and my experience is that they don't even listen to your list of symptoms. I've never met a doctor that really listens. All medical schools should teach their students to exercise good listening skills when dealing with their patients, in addition to taking their concerns seriously. That might help them connect the dots, as someone said.
    Anonymous 42789 Replies Flag this Response
  • :( sorry to hear about the loss of your child. I really hope you send letters to those doctors including your daughters autospy report. I'd personally think the sooner you do that, the more impact on them it may have. Doctors really do need to go further than the general standard basic tests in cases they cant work out. I myself have various severe conditions.. and it is only recently, after 10 yrs that various of my conditions are being finally diagnosed eg Postural tachycardia syndrome. ........ I worry about thyroid issues as I have so many different symptoms and hypothyriodism does run in my family too (3 blood relatives). I FINALLY got a doctor to do a T3/T4 test last year (after 10 yrs of issues) but that in my case seems fine. (i dont know, i still worry some with my symptoms and family history).
    taniaaust1 2267 Replies Flag this Response
  • WD123, I'm extremely sorry to hear about your story. I'm actually doing a speech about doctor recertification and misdiagnosis to be presented at a National competition in an attempt to sway audience members that we need better checks on doctors. I was wondering if you would mind telling me her name so I could mention her. I COMPLETLY understand if you don't want her mentioned, and it's completly your call.If you would like to but don't feel comfortable mentioing it on this blog my email is pepeokaaay@aol.comAll The Best,Jeff
    pepeokaaay 1 Replies Flag this Response
  • ...I'm actually doing a speech about doctor recertification and misdiagnosis to be presented at a National competition in an attempt to sway audience members that we need better checks on doctors. I was wondering if you would mind telling me her name so I could mention her.Jeff, I have answered via email. Everyone thank you for your supportive comments. My Mom has since had herself checked for Hashimoto's and tests indicated she does not have it. She got the TPO test done (<0.3 IU/mL), along with FT4 and TSH, done by the Mayo Clinic lab. I am still waiting until mid-April for my appt. with an endocrinologist.
    Anonymous 42789 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • I am deeply sorry for your loss, your story hit a cord with me as I almost lost my son at age 21 to cancer. At first despite him being very ill it took a long time before he was diagnosed and by the time they caught it cancer had spread to his spinal cord and he had a real battle on his hands before finally he went into remmision. I to had Hasimoto's thyroiditis and became very depressed. I am now hypothyroid on meds doing reasonably well apart from auto antibodies. You are not alone, I have no faith left in doctors and many should be struck off for their incompetence and pain they cause to people. I wish you luck for the future - keep on keeping on there's no other way.
    maggiemay 68 Replies Flag this Response
  • I'm happy you singled out a primary cause for her suffering, but I believe you may have missing something crucial here. What caused the Hashimoto's thyroiditis in the first place? I wouldn't be so quick to blame it on genetics without first reading the following articles and realizing genes aren't the only shared things between family members - similar exposures to electromagnetic radiation are shared, too... Did your daughter happen to use a cell phone or cordless phone? How about a wifi router? Were you living close to any cell phone or wifi towers or antennas? Were there any towers or antennas near her school?Seriously. You need to stop posting this crap on EVERY SINGLE POST on here. It is not helpful. It is not useful. It is not relevant. It is offensive. Adjust your tin foil hat and get a life, and please do not post your cell phone conspiracy theories ref. my daughter ever again.
    Anonymous 42789 Replies Flag this Response
  • blaze.. i wish you could be banned for that comment. That was completely over the top and so insensitive to this mother. Im actually quite upset you posted that to her.
    taniaaust1 2267 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.