November 24, 2005

The Slow Insidious Takeover - Diagnosis Achieved - Part Three of Three

The gout of course resolved. Interestingly enough, it never reappeared. It was a one-shot deal and that is unusual for gout or gouty arthritis. It was a fluke but it was a fluke that saved my life.

After the gout was over and I could walk and felt better, but worse without the prednisone anymore of course, we began looking at diagnoses. What were the possibilities? MS, Lupus, Lyme Disease, a connective tissue disorder, chronic fatigue syndrome… it was a long list. The blood tests began and one by one we ruled out things. I met every specialist there was and there were no conclusive answers. We found out what I didn’t have: I didn’t have lupus, I didn’t have MS, and I didn’t have rheumatoid arthritis. But I felt like something the cat dragged in all the time, unless I had prednisone.

The doctor who diagnosed the gout was suspicious about Lyme Disease and was concerned because if I had ever had it, it would never show positive on a test due to the length of time. He tested anyway, and although he believes I had it, has not documented it due to the testing showing negative. I did however have a reaction to the antibiotics which gave it all away: Right after starting those horrific doses of two antibiotics, I developed the characteristic bulls-eye rash on my arm. Obviously a tick and I had been intimate (without my knowledge). But it didn’t solve the problem. It helped some of the symptoms but being that I had Lyme Disease for who-knows-how-long, I do have some of the long-term effects of that problem.

The neurologist who determined I did not have MS didn’t have the vaguest idea what was wrong but agreed with my doctor that something was indeed not right. So off to an endocrinologist I went. That is where the story should end but it didn’t. This physician felt that because I wasn’t underweight (and in fact had a few extra pounds) that Addison’s was an impossibility, especially adding in the fact that I was hypertensive. People with Addison’s are supposed to be thin and have hypotension. He failed to consider that other diseases, disorders or syndromes can cause conflicting symptoms. But he pronounced me Addison’s-Free and sent me on my way.

We were back to Chronic Fatigue Syndrome. I was frustrated, my doctor was frustrated, and there seemed to be no answer. I would have settled for the CFS if prednisone didn’t fix it - but steroids don’t have that affect on CFS. And CFS wasn’t my first choice, although I had no idea what my first choice was.

The doctor at that time took his “Merck Manual” home and began studying. He is not an endocrinologist but was willing to try to search this out to preserve his sanity and mine as well. He was convinced I had Addison’s and that the endocrinologist was in error and set out to prove it.

The blood work began and upon retrospect, it was so easy to do, that I am amazed it wasn’t done immediately. I went into the office at 8:00am and had one draw and returned at 5:00pm for another. That was it. The levels indicated adrenal gland function was nearly absent. There was virtually no cortisol in my system in the morning at all, and just barely enough to function in the afternoon. But, being hypertensive was not making sense so he ran the test three times; the levels were lower each time, which had me worried because I wondered how low it would go before a crisis set in.

After the tests proved conclusively that my cortisol had gone AWOL, the doctor ordered a 24 hour urine collection to back up the blood work. It also showed the absence of cortisol. I never had the test where they inject the hormones to see if it is primary or secondary because of the sodium levels being so low and the potassium levels being so high. The tests also showed that the pituitary gland was functioning normally, and in fact was in overdrive producing the hormone that signals the adrenals to release cortisol, but nothing was happening.

It was official. I was diagnosed with Primary Addison’s Disease, put on hydrocortisone and the next day, when I woke up and took my cortisone replacement for the first time, I felt human. I couldn’t believe it.

Lest you think this story is over, it is just beginning. Addison’s changes your life and if other things happen in your life, as they tend to do, it can complicate your diagnosis and make everyday living complicated. I still had many obstacles to overcome and many problems heading my way. It is said that an Addisonian can live a perfectly normal life, but whoever said that didn’t have Addison’s and has never met anyone with it. This is as far from perfectly normal as I can imagine. And those experiences on this journey are what I will be sharing with you as time goes by.

There is nothing normal about having Addison’s and if you have it, or someone you love has it, you need to know what is going on and how you can help. What they are experiencing is real and “normal” isn’t going to happen again. But the good news is that, “good enough” will happen if you learn to let it. It just is a tough road to travel.

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Posted by: BAT at November 30, 2005 03:30 PM

Posted by: linda at February 18, 2006 10:29 PM

Posted by: Julia at August 3, 2006 03:33 PM

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