[DeeColleen]

#1059910

Hello Everyone!

As a graduate student, I am continuously doing research on various topics not central to my life and my experiences. I was recently given the opportunity to speak about OUR journey in my health communication final paper and presentation. I would love to get insights, and personal stories from everyone who has experienced a communication barrier with their physicians.

For me, the break down in communication occurred prior to my diagnosis. Whenever, I went to the emergency room, er, doctors office or my Universities health center I was told that I was just stressed and experiencing anxiety. My Graves Disease diagnosis, did not occur until about a year after my first symptom arrived. A doctor finally took me seriously when I complained of my not so faltering bulging eyes.

Please share your stories, I want to bring more awareness to our ailment.

Dee

[Kimberly]

#1178703

Hello – Hopefully, you will get some responses here, but if you are on Facebook, you might also post the question there as well:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

https://www.facebook.com/GDATF

I was fairly lucky in that my primary care doc happened to do a TSH test during a yearly physical examination. But I know that we have a LOT of stories here from posters who went from doctor to doctor to doctor before finally getting a correct diagnosis. The American Autoimmune Related Diseases Association did a survey a while back and found that patients with autoimmune disease took an average of 4 years and 4 doctors to finally get a correct diagnosis.

Wishing you all the best with this project!

[Raspberry]

#1178704

I think I had a few small flares of Graves before the big one that got missed. One time about six months before diagnosis I sat in the doctors office with a pulse of 110 and told her I was concerned, she said it was fine that some people’s hearts just go faster. A couple years before that I’d been having chronic diarrhea for weeks, went to the doctor and was advised to cut out caffeine and spicy foods. Three months before diagnosis I actually had blood work done that showed a lowering TSH but not down at zero and I had symptoms, but the doctor set no follow up and my odd symptoms increased until I finally went back with tremors and racing heart and demanded my thyroid be retested – she’d completely forgotten it was abnormal on the earlier test.

[Stymie]

#1178705

I was quite lucky. I went to my gyne thinking I was in peri menopause. Asked him to run bloodwork and he suggested running thyroid panel. Called me a few days later to let me know my TSH was at .01.

I love my gyne. He’s a one of a kind dr.

Diane

[gerical]

#1178706

I too was frustrated at the lack of understanding my PCP had when I opted out my extremely low TSH at the time it was o.o8 but T3 and T4 were normal. I had back issues several months prior and every time I went to the pre-op suite for an epidural my heart rate was in the 90″s. Unusual for me since it has always been in the 70″s . I was also very jittery at that time and had episodes of crying and normal and crying again. When I went for my check up to the PCP and pointed out these symptoms as well as the TSH he circled the T3 and T4 and said “Your labs are normal the TSH doesn’t mean anything.” He basically told me it sounded like I was stressed out, working full time, two kids, home issues etc and gave me a prescription for Lexapro. I really felt like I might be going crazy at that time. I was concerned about the lab so made an appointment on my own with an endo in March who basically told me I had Graves (wow pretty impressive that he diagnosed me without any further tests) and gave me a prescription for Tapazole and said don’t fill it until a repeat set of labs. Four days later I called the office to find out what the results were and the secretary called me back and told me the doctor said “your graves disease is worse, start the Tapazole and do another set of labs in six weeks” Wow didn’t even have the common courtesy to come to the phone and tell me himself. Pretty cold! As far as my PCP is concerned I sent him a copy of the scan report and antibody tests and wrote on the bottom “Guess LExapro wasn’t really the way to go!”

Needless to say I “fired both of them” and went to another endo who ran additional antibody levels and scans. The only problem is that she is only in the office once weekly. I work in the same hospital as she does and she usually emails me and then calls. I guess that is better than no communication. I wish the docs would all just sit back and realize that a 15 minute appointment is not enough time to voice concerns etc. Wish there was a better way sometimes…..

[WWWI2]

#1178707

Why does the phrase “That is not thyroid related” flow so easily off the tounges of Endochronologists?

When my methimazol dose was dropped too low and during subsequent raising and lowering of the meds, each and every time, and NO other time, my body begins to ache and my lower back spasms enough to keep me in tears for days and yet “That is not thyroid related” and there is nothing they can do for me.

When I was hyper, my hair changed it’s texture and what was straight became wavy. As soon as I went hypo and was put on Levothyroxine, my hair began to shed rapidly. I was informed I probably had a sudden occurance of female pattern baldness because “that is not thyroid related” and there is nothing they can do for me.

I can’t decide whether they are lazy or simply ignorant….

WWWI

[gerical]

#1178708

Sometimes I think BOTH!

[vanillasky]

#1178709

Try 15 years by an idiot endo that said I had Hashimotos/Hashitoxicosis and my thyroid would die and I’d live on Synthroid. WRONG.

After 15 years of highs and lows, I went to Cleveland Clinic. It took 2 doctors, a medical Endo and a surgical endo. they figured out it was Graves’.

I’d like to sue him or beat him up. Not sure which

[DeeColleen]

#1178710

Thank you everyone for your input; hopefully this project will be the beginning of shedding light to the break down in communication amongst doctors and patients. I still don’t quite understand why doctors, dismiss our symptoms. Blood work that tests TSH levels are quite in expensive… its quite puzzling.

[Author]

Posts