Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

The Paper Trail


  • Please log in to reply
3 replies to this topic

#1 Penny

Penny

    Silver Member

  • Bloggers
  • PipPipPipPip
  • 160 posts
  • Location:Suffolk, Virginia, USA

Posted 31 March 2009 - 02:03 AM

Hi everyone,

I just wanted to post about something that I just learned the hard way.

I was clearing out my paper files, putting some into boxes for storage and gathering copies of 'Patient Rights" forms for recycling when I came across what I thought was just a payment stub from an appointment with my Endocrinologist back in October of 2007.

You know those 'carnation' sheets of paper you sometimes get when you leave the office with three columns full of numbers with procedures, laboratory tests and diagnoses' listed that the Dr will circle. Well, just when I was going to toss it in the box for storage I scanned the circled items.

There was hypertension... there was hypothroidism.... but what was this?
What is "Thyroiditis, chronic lymphocytic" and why was it circled?

Off to my trusty computer I went and typed it in the search window and up pops "Hashimoto's Thyroiditis".

I was livid.... shooting myself into a pretty major flair of my gastric issues, because I was NEVER told that I had this! It is not 'life threatening' or anything, but why was I never told? Not to mention, it makes my not being able to keep any medications down a bit more problematic and the fact that, despite the "positive ANA, but negative because it is not high enough and you have a large family history of autoimmune disease" I was diagnosed 2 years ago with a (words that would melt the monitor) autoimmune disease! (Breathes deeply, counts to ten, refocuses)

The reason I am posting this is because if you are like me you probably just fold the payment stub and never even look at it before tucking it in some file for taxes or medical records.

It was a major lesson to me, and one that I want to pass on to the rest of you. Read every scrap of paper you get at the Dr's office thoroughly, even the receipt. You never know where important information could be hidden.

Warm hugs,
Penny

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 31 March 2009 - 03:58 AM

Oh my! That's incredible that there was never any follow-up done on that~ My monitor is steaming up in sympathy... Oops, the dogs have just left the room, better calm down a bit.

What are you going to do next? I think I'd request a copy of the complete records from the endocrinologist and then make an appointment to go see her. (If you want, I'll go along for backup.) This certainly does put a whole new spin on things, doesn't it?

Want to know what my ex-GP wrote in the diagnosis box the next time I had to see him after getting the scleroderma/ILD/PH diagnosis from the specialists? The little rat wrote "interesting diagnosis".

Warm hugs (but from a distance if you are still fuming!) and lots of love,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Penny

Penny

    Silver Member

  • Topic Starter
  • Bloggers
  • PipPipPipPip
  • 160 posts
  • Location:Suffolk, Virginia, USA

Posted 31 March 2009 - 07:21 AM

Jeannie,

I finally got a call back from the Endocrinologist. Their response: "It is not like it makes a difference." :blink:

I am getting my entire file from that doctor (the Endocrinologist), and have an appointment with my new Primary Care doctor in two weeks. (Final straw in my old Primary's case, since he never passed on that tid-bit as well.)

I was about to send out smoke signals on the whole medical profession when out of the blue my Oncologist's office calls, just to see how I am feeling. Some of my tests have already come back and they want me to do some more, but that was all sent in a letter to me that I should get today. The nurse just called to see if my blood pressure was minding it's manners and to tell me, "We are going to get to the bottom of this."

I then girded the loins (as opposed to girding the lions, which can be tricky) and called my Rheumatologist who informed me that Hashimoto's is not something a Rheumatologist deals with, even though it is an autoimmune issue.

I am no longer dangerous :lol: and am now safe to hug. It is amazing that one good doctor's office can trump so many bad experiences!

Warm hugs,
Penny

#4 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,706 posts
  • Location:in the Rocky Mountains of the USA

Posted 31 March 2009 - 03:55 PM

Doesn't matter? DOESN'T MATTER?!! Deary me. Words fail me. The dogs have just done a bolter. It was either my loud noises of derision or your lions, dunno which.

When you next see or talk to the oncologist's office, please tell them I said thanks. If they ask what for, just say everything.

Have you looked at the page on Hashimoto's? Shelley knows a lot about it too.

Big hugs with a few extra thrown in PLUS the border collies all have granted you petting privilege,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network