Saturday, November 14, 2009

Hot Potato With Patients?

Sometimes I feel like my doctors are just playing "Hot Potato" with me.

They keep passing me around, sending me to one another, hoping that someone else will come up with a diagnosis. 

My rheumatologist, concerned about my continuing Vitamin D deficiency despite megadoses of supplements, decided to send me to my endocrinologist. 

The internist thought that was a good idea because my thyroid levels were fluctuating widely and we couldn't figure out why. Maybe it's connected, she said.

So I go see the endocrinologist, who, by the way, had a three month wait for an appointment despite the fact that I've seen him since 2003. By the time I get in with him, my thyroid levels have stabilized and I've attributed the fluctuating levels to using a generic of Levoxyl. (I know, I know -- generics are supposed to be equivalent to their name brands. But thyroid drugs are notoriously fussy.)

So, the endocrinologist expresses major concern about my stagnant Vitamin D levels too. He decides that the problem must be an absorption issue, and wants me to visit my gastroenterologist. 

But the gastroenterologist did an endoscopy earlier this year (I think -- I guess I'm not sure of my dates now) with multiple biopsies looking for celiac disease as an explanation for my low iron stores (despite oral supplements) and my Vitamin D deficiency. I didn't have celiac disease. I guess he could do a colonoscopy with biopsies looking for absorption issues in my intestines, but wouldn't he have suggested that back then if he thought it was a good idea? After the endoscopy, of course, he referred me back to the rheumatologist

(I left voicemail for the gastroenterologist's scheduler because I'll be a good little patient and go consult with him as ordered. That was Tuesday, and I still haven't heard back. I guess I'll need to call again next week.)

Anyway, I feel like I make the endless loop of specialists as they pass me back and forth. Do they really think one of their colleagues will suddenly have a brainstorm and figure it all out? I mean, I guess that is the hope, otherwise there's no point in seeing any more doctors. 

I'd just like the endless loop of Hot Potato to end.



SharonMV said...

I understand your frustration! Being handed from doctor to doctor with no progress is not good. My problem now is that I can't keep up with the specialists I need to see, let alone try to work a new one in.

Are you on the 100,000 units of Vit. D now? I was on the megadose of 1 pill per week which had little effect, but after going up to 2 pills per week my levels increased. I think it took about 3 months.


Aviva said...

Hey Sharon!

I'm on 50,000 IU every 5 days, and have been for, gosh, at least a year. It's frustrating!

Sorry you're struggling to juggle your specialists. Have you found that somehow they clump together on when they want to see you again? Seems like I had a period in September that I saw at least 7 different docs (not counting my acupuncturist) in a two week period. Just because that's how it worked out when they all said, "I want to see you again in X weeks/months." Exhausting!

Anyway, thanks for the empathy. I really really appreciate it! And I'll ask my doc about stepping up to 100k IU to see if that helps!

Jeanne said...


I have been a "hot potato" and it's not fun! I understand your frustration.

Are your doctors good about communicating with each other about your case?

Let me try to give you some hope with an example of when "hot potato" reached an endpoint with a valid diagnosis.

I was having various symptoms (shortness of breath, extreme fatigue, etc). My PCP did an EKG and a Holter monitor. Then she referred me to the cardiologist. The cardio ordered and echocardiogram/stress test. I failed it. My lung pressure was very high. This resulted in a referral to a pulmonary specialist who works in the critical care unit of a large teaching hospital. You see, they were referring me to him to rule out "pulmonary hypertension". PH can sometimes be fatal. I had to wait about 3 months to get in with him. He poured over my thick chart full of records and pounded me (and my husband) with questions. He asked my husband questions about how I sleep. He then announced that he didn't think I had PH but rather he suspected sleep apnea. So, he referred me on yet again... this time to the sleep disorder clinic.

Bingo! I have obstructive sleep apnea.

So I went from PCP to cardiologist to pulmonary specialist to sleep disorder clinic... but I finally got the right diagnosis!

Persistence can pay off. If you are unhappy with any of your docs, you can always switch to someone else.

Hang in there!!!