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.
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.
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.
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