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Old 08-25-2008, 09:47 PM   #1
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So depressing...discouraging...whatever...

I am so discouraged about all the docs out there..at least the ones I have met that seem to know nothing about thyroid issues.

For months now I have been from one doctor to another to try and find out what is wrong with me. Besides the run of the mill thyroid symptoms and the fact that Hashi and thyroid cancer run in my family. ( I actually had an ENT say to me "Those run in families?) I have had trouble swallowing and voice problems for close to a year. When I thought it was unbearable in Feb that fabulous ENT told me that it was all in my head. I get frustrated and give up on the docs...try to take suppliments to help how I feel etc...

Since June the swallowing and voice have been terrible. My only help has been my GP who has been kind enough to run tests and ultrasound. My bloodwork comes back (has been posted on here before) within normal range, but shows signs of Hashi (big surprise)...I don't even think my GP knows what Hashi is!

Okay...ultrasound shows two thyroid nodules...I take this information back to that wonderful ENT who thinks I need antidepressants...and he doesn't even look at the films and skims over the ultrasound report and doesn't even address the nodules...he wants to refer me to a neurologist because this could be MS...or Lou Gering's!! Your kidding me!! I asked about a biopsy for the nodules...both are more than 1 cm and he says I think we should wait and watch them...we will check them in 6 mos. Okay..leaving in tears...finished with that guy.

On to next ENT...I take my ultrasound and films and give her my history. She seems to be more understanding...She schedules a biopsy of the nodules to be performed this Wednesday. I also tell her I am begining to have shortness of breath...she gives me a script to have a chest x ray. I leave there thinking maybe I am gaining some ground...

I get the chest x ray this past Friday...(everyday now I am feeling worse and worse...throat tighter...voice is barely there most of the day...) After the x ray I am talking to the tech...she is pulling up my x ray on her computer screen to make sure it is okay...I see on this film that my trachea is curved or pushed over to one side...I ask her..is that me..she says yes. I asked shouldn't that be straight? She says it should, they will probably want to order more tests to see that better...I know that the tech had me straight on for the x ray..so it isn't that I was crooked.

Over the weekend...I felt really bad...woke up Sunday morning and could actually feel a large hard lump on the front/left of my neck...It is very tender and have felt for a while that I have pressure type pain pushing on my collar bone/lower neck. I called the ENT this morning and told her what I saw on my x ray. She told me to come in later that afternoon and she would get the film over to her office.

When I got there...they hadn't gotten the film...only the report. The report only mentions that my lungs are clear and healthy...says nothing about my neck and the curved trachea and the mass type thing that I know the tech and I saw! So I show the doc where the lump has come up on my neck...I can see it and feel it plain as day...as well as co-workers today before I left work. She is blind as a bat...she was mushing all over it and killing me because it is so tender...shaking her head that she feels sees nothing!! Am I crazy or what!! She tells me that they will get the film of the x ray tomorrow and see if there is something on there...I know what I saw..and now she is making me doubt myself. In the meantime I am miserable...

Sorry that this is so long...I just read through here and everyone has similar stories...when will they wake up?

 
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Old 08-26-2008, 05:42 AM   #2
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Cool Re: So depressing...discouraging...whatever...

Quote:
when will they wake up?
When donkeys or pigs FLY? ?

Trust me, I h e a r you ({({({(Nixtribe)})})}) Personally, I don't TRUST that people are going to get films over to Dr X. So if at ALL possible, I go sign them out and hand deliver them.

Also don't TRUST that referrals WILL get DONE in a timely manner - if I wasn't nipping at the heals of my husbands Doc.

If your trachea is CURVED, you think they could FEEL the growth

Hope you find someone who HELPS soooooooooooooon

 
Old 08-26-2008, 09:05 AM   #3
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Re: So depressing...discouraging...whatever...

i hear ya. the frustration is unbearable. you can't give up though. we all have to find support here, from friends and relatives, and keep pushing. i know it is hard when hitting dead-ends all the time and not being listened to by the doctors, but you have to persevere.

keep trying new doctors until you find the right one. i saw 4 different doctors and finally felt more understood and better treated through a naturopath. yeah one of the endo's i saw said, "gee i hope you don't have MS". gosh, thanks.

the more i see of the medical system, the more i am amazed at how dysfunctional it is. emergency medicine is probably good, but diagnostic and preventative is sorely lacking.

maybe you can look for an osteopath? people here have said good things about them.

keep pushing.

 
Old 08-26-2008, 11:21 AM   #4
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Re: So depressing...discouraging...whatever...

I'm with Scoot Nixtribe I know it can be SO hard...........discouraging........but press on! Your health is too important to give up because of some difficult-unaware, etc etc ad nauseum docs

I relate from past health issues where everywhere I turned there were no answers In my case of the thyroid cancer, it hit me out of the blue. However, now I can't help but wonder if some of my other longterm aggravating health issues were all tied back to the thyroid...........hmm.............anyway - push on! Push on! And when you feel like you can't push on anymore - come visit your fellow thyroid brothers & sisters here on the board. There's always support - encouragement - empathy here. Take good care

 
Old 08-26-2008, 01:18 PM   #5
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Re: So depressing...discouraging...whatever...

Thanks everyone for your support. Of course I am not really going to give up...but yesterday I was so upset I couldn't bear to think about it anymore.

I still havn't heard from my ENT about my chest x ray....i called the imaging place where it was taken today and told them I want to pick it up tomorrow.

I am going to keep all my stuff with me so i can just take it from doc to doc myself...I have a biopsy tomorrow on the two nodules on my left side of my thyroid. Those nodules from what I am told have nothing to do with the lump I feel in the front of my neck.

Wish me luck...

 
Old 08-26-2008, 01:38 PM   #6
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Re: So depressing...discouraging...whatever...

From your description of your x-ray, it sounds like you might have a substernal goiter. It's not something the doctors can actually feel on your neck, because it is BELOW your collar bone, kind of under your upper ribs. That is probably why you are short of breath. It should be easy enough for them to diagnose by looking at the x-ray. Let us know what you find out, and even push for a copy of the x-ray, and show it to your ENT, or whoever is most likely to cooperate.

 
Old 08-26-2008, 04:50 PM   #7
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Re: So depressing...discouraging...whatever...

okay...called the imaging place today to arrange to pick up my x ray myself. they said that the ENT recieved it today. I called the ENT and was only able to leave a message for the nurse pract.

About 30 min later one of the medical assistants in the office calls me on behalf of the nurse pract. She tells me they don't see anything on my x ray that I described. (This is the same assistant that sat me in my room yesterday and took my vitals...she was nasty and snobby and looked at the x ray report and told me (before I saw the doc) that nothing was mentioned in my report about my neck. I told her to have my film at the front desk tomorrow, I will be picking it up after my biopsy appointment.

 
Old 08-26-2008, 05:55 PM   #8
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Re: So depressing...discouraging...whatever...

Good assertiveness! I hope you can find someone to pay attention.

 
Old 08-27-2008, 07:48 PM   #9
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Re: So depressing...discouraging...whatever...

The latest...

I went over to the imaging place to see if I could get a copy of the digital picture I had seen on the screen the day of my x ray.

Apparently...the image I had seen although it was me...is some kind of tool on the computer program that makes sure the x ray is taken correctly and they don't keep them. (Anyone that is familiar with current radiology? I was a surgical assistant for an Oral/Maxiliofacial surgion for 8 yeas and took many head and neck x rays...but I havn't been in the field for 10 years.) So...I don't know what I am going to do as of right now...because now my ENT thinks I am crazy

 
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