I didn’t realize, and I would guess most people don’t, that every time you see a specialist they send a letter back to your primary care physician.  I first realized this in 2011 when I asked my PCP’s nurse to copy any information from my first visit with a rheumatologist in 2008.  I expected to receive copies of the lab results and notes from my PCP about why I was being referred to the specialist.

But instead I received a copy of the letter from Dr. A to my PCP.  This one the one that I’ve mentioned before that gave written proof that I had two symptoms of autoimmune disease in 2008 (and I actually did have two more at that time as well that she just didn’t ask about).

I never really these letters much again until recently.  When I began seeking care at KU Med, shortly after my first visit I received a copy, by mail, of the letter sent to my PCP.  This one was primarily written by the resident physician in the teaching hospital that conducted most of my appointment.  It had a portion written by the attending as well.

Despite the paper that I prepared for this visit that listed all of my relevant lab tests, the dates of each medication I was prescribed and the reactions to those medications, there were still errors in the letter.  For example, I had verbally corrected the resident several times when he would say that I’d been on prednisone back in 2001.  I had not.  The first time I was placed on predisone was spring of 2013.  Even after at least 2 verbal corrections and the written paper I’d brought, the letter to my PCP still indicates that I was on prednisone in 2011 in the “patient history” section.  It also indicated that I “didn’t tolerate methotrexate and humira” when it was only the methotrexate that I didn’t tolerate – the humira I was fine taking, it just didn’t do anything beneficial for me.

The resident also indicated that the “assessment and plan” for my Sjogren’s Syndrome was “take pilocarpine and rhinocort aqua.”  The pilocarpine is to help produce saliva – and it works well.  But the rhinocort aqua is my allergy medicine that I take seasonally.  It has nothing to do with my Sjogren’s.  I think he mean Restasis (the eye drops to help reduce inflammation and therefore encourage more tear production).

In the “Attestation” section written by the attending doctor, he indicates “No tender points on examination” which isn’t true – most of my finger and toe joints were tender when he pressed on each one during the examination.

The letter from my second visit to KU Med (only the attending was present at that appointment) contained errors as well.  This one included sections for past medical history, past surgical history and family history.  The surgical history indicated I had a thyroidectomy only the left – when in fact I had the left removed and then 4 days later the right.

In the “History of Present Illness” section it indicates that I “had punctate plugs of [my] lacrimal glands, which has helped to some extent.”  Wrong.  I had them for a week – they were the dissolving kind – and they caused me physical pressure and discomfort so I never had the permanent ones placed it.  I clearly explained this to him, yet it appears in the documentation as I currently have them and they’re helping.

It also describes my “having persistent numbness and tingling of her upper and lower extremities as well.”  It then says I have “no other complaints at the current time.”  That’s also incorrect.  Yes, I did discuss the numbness, but I spent far greater time discussing the loss of fine motor control and clumsiness – which to me is a an important part of the description of my neuropathy.

If all of these errors are made by the specialists as they communicate their encounters with me to my PCP, are these errors effecting my care and treatment?  If these errors occurred in the 3 rheumatologist letters that I’ve received, how many are in the many, many other letters from Dr. A and Dr. B that I never received?  If these errors are a part of my documented medical record, will they effect medical or insurance decisions in the future?  And why don’t all specialists send a copy of the letters to the patient like KU med does?

2 thoughts on “Letters

  1. I have run into the problem frequently. What’s worse, if you ever go on disability, the insurer may use the inconsistent reporting to claim that you don’t really have your disease, or that the varying symptoms show that you are making it up, or that you haven’t tried all the appropriate treatments (if one is reported wrong).

    Recently, I had a doctor report that I didn’t have Sjogren’s because I had a MRI that proved I didn’t have Sjogren’s. First of all, I have only had lower back MRIs, and second, I can not see how an MRI would provide data about Sjogren’s. Nor can my rheumy.

    It is infuriating. Which is why when you find a good doctor, you try hang on to him or her, and build up the knowledge together.

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