 For the past two days, I have been posting about my experiences with the medical community and autoimmune diseases. I am hoping that it reaches one person who can use it in their search for answers. Today is the last post on this subject and I will get back to normal stuff!! If you will remember, I ended the last post on a good note, thinking that all was cured and life was going to go back to normal. One might think that would have been the end of it. But no – there was much more to come. Within three months, my heart was racing, I was nervous, I chattered like a Magpie (I only chatter like a Mockingbird, normally) and I could leap tall buildings in a single bound, without the cape! I was hyperthyroid and getting more and more hyper by the day. A second endocrinologist took one look and said, “I’ve never seen anything like this. I don’t know that much about Hashimoto’s, but I’ve never seen anything like this!” That gave me great confidence in how my dollars were being spent and I opted for a third opinion. Endo number three determined that Endo number one had misdiagnosed me and that I actually had Graves Disease and not Hashimoto’s. I asked if one could have both. I have to admit here that I had done enough internet research to know that in rare cases, it is possible. This doctor declared, “Impossible!! They are mutually exclusive!!” He never called me to set up tests and never returned my calls to attempt to set up tests and so I figured that was another copay down the drain and that I didn’t want him either! It was at this point that I suppose I needed abuse to go on top of everything because I made an appointment with my cardiologist, in hopes that he would refer me to a young woman at OU Medical Center whose research on hyperthyroidism had intrigued me. I found her on the internet. Yes I did. In big, blue letters next to her name, the website indicated that she had only been in practice for 8 YEARS, like a warning to run from this sweet, young doctor wannabe. I was not deterred. My visit with the cardiologist began with the normal salutations and he asked me to give a synopsis of my concerns. I synopted and then made the mistake of saying, “I have been doing some of my own research on the internet and have read the book, “Hope For Hashimoto’s” when he looked at the ceiling and said – I kid you not – “Oh God help us!!” He lit into me like the Tasmanian Devil on Bugs Bunny only with gray hair and a stethoscope. Evidently, according to him, I am the kind of patient who wants to treat myself and looks things up on the internet to tell doctors what they need to be doing instead of just trusting them to take care of everything. According to him, I am a doctor hopper who doesn’t get the diagnosis I want and just goes to the next one because I have already determined my treatment. So what if the doctor is inappropriate, or admits ignorance or doesn’t even bother to set up tests? I should have just been satisfied to accept things as they are. He ended his tirade with, “STAY OFF THE INTERNET!!!” I reacted in the way that most women react. I’d like to tell you that I stood up, put my hands on my hips and told him that he was a jerk. I’d like to say that I grabbed my belongings and told him to take a flying leap. But I didn’t. I did what so many women do when they are mad – I cried. And I didn’t just cry. I hiccup cried. I sobbed. I told him that he didn’t know what he was talking about and that sometimes patients have really good reasons for seeking multiple opinions. He blew me off. He told me my heart would be fine, in spite of the high thyroid numbers, that I have Hashimoto’s Disease and that it is not possible to have both Hashi’s and Graves. He assumed that I was wanting a new endocrinologist and hinted that his desire was for me to see his friend of 30 years. I requested the sweet, young thing at OU and he balked. He explained that she had not been a doctor very long. I said that was fine. He said that his friend had been a doctor for very long. I said I didn’t care. He sighed and made the appointment. Then he walked out the door with a last, “Stay off the internet” admonition. I might add here that a few days later I wound up at the ER with Afib and a heart rate of 165 beats per minute, requiring Cardioversion which is basically shocking your heart back into reality. So he was wrong on that count too. I was sorely tempted for the ER doctor to add a note at the bottom of the charts to my cardiologist that said, “She checked on the internet and determined that her heart rate was too fast!!” But that would have been disrespectful….. I have now seen the young doctorette. She is awesome. She is kind, soft-spoken, well-educated and decisive in her observations. She explains in detail and lays out a plan. And she follows through! She even called me at home one morning to give me an update. Her diagnosis? That I have the autoimmune disease that presents itself as BOTH Hashimoto’s and Graves Diseases with both types of antibodies. I’m not nuts after all!!! So, bam, bam, bam, she has set up a million tests that have been taken, meds have been prescribed and I will also be doing a 10 day radiation treatment on my eyes for Thyroid Eye Disease in hopes of nipping that in the bud. It has been a long, long trip, but I feel like I’ve reached a destination point. This will be a life-long battle with my body, but I feel like I now have an advocate who will join with me in the fight. So don’t be afraid to take responsibility for your own health. Nobody cares about you as much as you do – except for God and He has given you the tools to make good decisions that lead you to better care. A great doctor is amazing, but, as in every profession, there are some not so great ones and you don’t have to be satisfied with not so great. I hope that you can gain something from my experiences. It will have been well worth it, then!! And I promise to do a demonstration post next!!  |
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Tags: autoimmune, doctors, Graves Disease, Hashimoto's Disease, Thyroid, thyroiditis
Thanks for sharing all this. I pray you will soon be fit as can be. It certainly sounds like you have found a doctor worthy of the title. The rest need to retire. Looking forward to hearing about the good results of all your efforts.
And good results ther will be, Beth!! Sure of it! 🙂 Thank you.
Hopped on over from another site.
When I saw this, I immediately thought of my mom. She supposedly died of Graves four years ago. It took several years and treating symptoms that were attributed to heart problems before ANYBODY bothered thinking maybe they should check her thyroid. She had a heart attack in 2003 and later it turned out the heart attack was the result of thyroid issues not because of a bad heart or other things that could cause a heart attack. She had symptoms that were related to both hyper and hypo-thyroidism along with a heart damaged by an attack during the last few years of her life.
It was so hard to see her suffer while not knowing what was really going on. I constantly told her to go back and ask them if it could be something else, but she had a fear of hospitals (for good reason) and refused even when she had to go in for something, like anemia or her heart racing and other little problems that popped up. She had a cough that would never go away, a leftover from when she had pre-bronchitis and the whooping cough (her thyroid messed up her immune system too). Her emotions were very erratic, and she fell asleep A LOT and was always tired. I sometimes wondered if I should’ve been more demanding, but at the time I was worried that I would work her up into another attack, so I backed down when she started yelling at me (she would suddenly freak out and yell obscenities at other times when I might make a small mistake or try to do something she insisted she had the strength to do as well).
Good thing you didn’t just ‘trust’ the doctors. One doctor mom had was leeching off of her pretty good because of her company insurance. It made me so angry that they could use a person who was seriously ill that way. All it took was one person to actually do their job (it wasn’t a doctor either) for us to find out what it really was. By then it was too late, but for the last few weeks of her life while she was on treatment she felt so much better. I just wish I wasn’t so busy with my job at the time. My sis was lucky to go shoe shopping the day before she died. I ended up wearing the sandals mom bought that day for the past four years.
I hope you feel better now that you know what’s going on!
~Lily~
Lily, thank you so much for sharing your experience. It made me so frustrated to hear of the difficulties you and your mom experienced. One would think that doctors, with as many people who have this problem, would look at thyroid right off the bat. Just crazy.
I am so sorry for your loss. I hope that you and your sister are able to see God’s blessing and peace in all you do and in all you experience. Thank you again for sharing.
Aren’t some doctors just crazy?? When my daughter was two she told me her legs hurt. I looked at them, saw nothing wrong, told her she was fine, put her in the bathtub for her nightly bath, took her out and she couldn’t stand up. I looked at her legs again and she had little red, raised dots and swelling and black and blue marks! She looked like she had been beaten except for the little red dots. We called Kaiser to get permission to take her to the ER. The nurse on the phone said, “Get her here quick!” My heart sank and I raced into action. My thought was cancer. They took her blood and urine, did tests, and said they didn’t know what caused it and sent us home. I went to her doctor the next day. He said we don’t know what caused it. Take her home. Fast forward a year. The same thing happens. More blood work, more urine samples. Her same doctor says to me,”It’s anaphalactic purpura.” I said, “What!?” Write that down. This was before the internet so I went to San Jose State’s medical library and looked it up. I made copies of every medical article and I looked up and wrote down the definition of every medical word I didn’t understand. At the next office visit I showed the doctor what I found and copied and he went ballistic on me! He told me it was illegal to make those copies (the library let me do it though). She had had an allergic reaction to something. I suggested possibly cough medicine since both time she had had cough medicine. He suggested giving her more cough medicine to test my theory. That really made me angry since one article stated there was a 10% chance of death if vomiting was involved. There was vomiting. We never went back to him, she never had cough medicine again and she never had anaphalactic purpura again. Like I’m going to risk my child dying to prove I’m right!! She is now 32, healthy as can be with two little girls of her own.
Thank you for sharing your trials. May God bless you and heal you.
I’m glad you shared your story. Keep going until you find treatments that work! I have prayed for you :). Jennifer in western NC
OK, Brenda, THAT doctor was nuts!!!! Give it to her and see what happens? Oh my gosh. I am so proud of you doing all the research and all. Good for you!!! Thank you for sharing.
Jennifer, thank you so much!!! Prayer is so appreciated.
MB I am so glad you just kept going to find the right Dr. I totally understand. There are Dr’s who have practiced for 30 years, and new Dr’s out there that certainly are more current in new things. I would always try to go to a newer Dr, even if they just got out of school
As a matter of fact, I am seeing a “new” Dr, later this morning for some issues I have been dealing with for over 2 years. This will be my 3’rd Dr on this issue! And like you, I have done a lot of research on the internet. WHY NOT? You can get so much information now days and it helps you to be able to ask the right questions also!
Blessings to you and yours,
Diane
Oh, Diane!! You are going through it too and good for you for taking responsibility for answers!! I sure hope you get on the mend quickly!! And I hope your “new” doctor will be an answer to prayers. Hugs! 🙂
Sigh… I just caught up on your blog. I have so many things I want to say and also I don’t know what to say… I am so sorry to hear what you have been going through. I will keep you in my prayers too. I am glad you shared with us and I am glad about your new young Doctor. I have had some of the same experiences although not with issues as scary as yours. I know this blog is “the big bad internet” too but I am sure others will agree that we feel like we know you. You are so open, transparent, genuine and friendly that I am sure we are seing the real you (even the gray, ahemmm I mean ‘silver’ hair) LOL You have taught me and inspired me and I am sure you have others as well. We are like your little internet ‘fan club’ (or maybe stalkers) Keep us posted and if you need anything at any time I am not far away! You have my email if you ever need to use it! God is in control, I have to remind myself of this daily if not every few minutes sometimes! You are important! CT
Carol,
What a blessing you are!! Thank you so much for your lovely words and thank you for being a “stalker”!! 🙂 You all are so important to me and I so appreciate the time that you take to visit my little part of the internet universe. Thank you for the prayers!!!
OK, MB. Now more prayers are goin’ up.
God Bless…
Thanks, Hawkeye!
I am an RN with 20 plus years experience in the Emergency Department. The old boy system lives strong in the medical community today – as evidenced by your own physician reffering to his buddy. New physicians are not practicing medicine from decades ago. Most doctors do the minimal requirments for continuing medical education. Grey hair doesn’t always eqate to good medicine. Also as our health care system is changing there is a push to make more money quickly. I have seen women come in having heart attacks with typical female heart attack symptoms and be treated with 1) anti anxiety drugs and sent home 2) have their gallbladders removed 3) have hysterectomies. 4) Loose heart function by being ignored and shorten thier lives. Educate yourself!!! The internet has some crazy information and some credible sites (WebMD). It’s like anything else in this life – our own responsibility to educate ourselves. I ALWAYS tell my patients “if you took your car to a mechanic for a malfunction and it wasn’t adequately addressed would you keep going to the same repairman – continue paying for bad service?” You are seeking a service – nothing more. No one has the right to speak disrespectfully to you. Would you let your automechanic bless you out as this cardiologist did and continue to patronize him? I’ve seen really bad outcomes from bad medicine practices (death). You get one life and one chance when it’s critical. Never back down in calling someone out for being unproffessional and inappropriate. I hope with all the electronic devices available today, these bullies with an MD will be exposed. Isn’t it amazing the physicians have demanded no video taping of child birth? Wonder why? Their actions had consequences. Is is not amazing that we cower to their demands when we are the ones who are paying for a service? Blessings and Praise God above you persevered and did not retreat.
Wow. Thank you for the validation, Kathryn. You really ARE in the trenches and see more than the rest of us. Thank you for the advice and wise words!! You are so right. We would all do well to take personal responsibility for our health.