Adenomas and no answers

Dear Doctor:

I am a 59 year old person who doesn’t test well on lab tests.  This has been a problem, like when my appendix ruptured and nothing showed up on any labs. Presently I am very sick and I think I am battling two different problems.

Problem #1: I have had a sestamibi scan and it shows a adenoma on one of my parathyroid glands.  I have had out of range ionized calcium levels, serum calcium levels in the upper part of the range and a normal PTH levels.  I also have a nodule on my thyroid.  I had Graves in my late 20’s.

Problem #2:   I have had catecholamines that were out of range and an MRI showing something (pheochromocyt) on my adrenals.  Since my catecholamines are not three or four times above the normal limit, I cannot get that resolved.

In addition, I have already had an LH/FSH pituitary adenoma removed.  After the removal of this, the quality of my life did improve.  Now I have severe neuropathy, my muscles ache (I have been on 45 mEq of potassium/daily for years) and I am always exhausted.  My primary care doctor has tried to help me with this, in fact if it weren’t for her I would not have had most of this testing, but now she feels she has gone as far as she can.  

There are also other examples too.  When I do get something resolved the physician/surgeon always remarks on how poorly I test and that I should tell my other doctors this.  My reply is that I do tell them, it doesn’t change their opinions.

My question is there a place where I can go that this is understood?  Is there anyone else with this problem and how is it handled?  Thanks in advance.

[Mark Lupo, M.D.]

You have multiple endocrine problems and possible multiple endocrine neoplasia.  I would suggest going to a university based endocrine Center or a Mayo Clinic or Cleveland clinic type setting for further evaluation.

[B4SuzieQ]

Thank you for your answer.  Unfortunately I have already done that a couple of times.  I live outside of Houston and have been to both Baylor and UTMB, along with 7 other endocrinologists in the last 11 years.  Always I have been told the same thing, my levels do not warrant any further examination.  They say they will repeat the process again in 6 months to a year, but year after year the levels never go higher.  Perhaps it is time to travel.