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.