Here is a summary, as I remember it, of what my doctor told me:
- noticed that my ferritin level is still very low (up to 28!), advises I increase supplements and repeat labs in 2 months. [note: I've been on supplements now for 5 years]
- believes I have Chronic Fatigue Syndrome and that I need to learn to pace myself, live with my limitations and treat the symptoms.
- was very resistant to my questions about the genetic test for MTHFR, telling me a story about a patient she did not authorize a genetic test for who went to the US and paid for the test...apparently she felt this was irresponsible; whereas I think if you have the money, why not?
- Told me that MCH means "red blood cell height"....height? (I am envisioning a long, tall blood cell at this point). But not to worry, because lots of people are over the reference range for this test. Thanks to my blogger friends, I knew that one.
- Suggested that an ANA of 1:640 was not uncommon (despite my research showing that a titer of 1:80 is found in less than 5% of the population, 1:120 in less than 3%...)
- Has trouble believing that a TSH below 5 could make much of a difference clinically (but agreed to continue treating anyway, thankfully)
- Thinks that giving me access to my lab records may be harmful to me, presumably because I will research the results online and come up with new theories. (but agreed to continue sharing them, with a longer turn around time).
- Did not seem to fully accept that their office sent outdated lab results to the endocrinologist (after declining to send me my most recent copy records in preparation for the appointment), leading to the specialist choosing a potentially inappropriate course of treatment.
- Is concerned about me continuing to seek explanations for my fatigue and bringing ideas and research to her for discussion. (I think she feels I won't value her opinion).
BH attended the appointment with me and shared his reflections when we left, saying, "I don't think either one of you is listening to, or understanding the other."
Here's how it looks to me: I feel like she is telling me that I have to give up hope of finding an explanation...if given the Chronic Fatigue diagnosis, I'm afraid I'll get put in that box and forgotten - never getting back to work or to school.
BH says he doesn't see it that way, he thinks she is trying to manage my expectations.
I know that there may not be an answer, but if I'm not the one looking for it, who will?
In the end, I think we got to a fair understanding, I just wish that I could communicate more effectively with her from the start.