I’ve detailed in the posts here and here how difficult it was to get someone to take my symptoms seriously. One of the most important aspects of that journey was how convinced the doctor was that I was suffering from some kind of anxiety – to the point of talking over me when I tried to protest. At the time, I just believed that he was making a huge assumption based upon one blood test. Nearly nine months down the line inconsistencies have surfaced that suggest something else may have been at play.
The false anxiety diagnosis had been weighing quite heavily on me. Despite the fact that I was now figuratively sitting atop a stack of official documents that refuted that initial conclusion, there was a small voice in the back of my mind calling me a ‘faker’ and telling me that my symptoms were due to some kind of personal failings. What if I had merely managed to fool all the other experts into believing I was physically sick when I was really suffering from a neurosis? Hell, my own husband has trouble understanding that I’m actually unwell, so could all of this really just be a manifestation of my mind? I had to keep checking: reassuring myself that I wasn’t making it all up.
I decided to consult Dr. Google to find out everything I could about what raised cortisol levels actually mean; whether there are other factors that could cause it to spike, and was it that good a marker for an Anxiety disorder. The first alarm bell rang when I read several websites’ descriptions of how a patient should prepare for the test. Every single one stated that any medications, both prescription and over-the-counter, needed to be declared and some stopped, if possible, for 24 hours prior to the blood being drawn. No mention of medication was made, and as I take around 300mg of Dimethylethanolamine (essentially an over the counter version of Ritalin) just to make it to the local shop it goes without saying that I was absolutely chock full of those stimulants on the morning of the test.
The second alarm bell was that, in many cases, the patient would be asked to lie down for 30 minutes before the test; which would be fairly easy to do if the test was being conducted during a hospital stay. So exhausting myself to get ready on time coupled with climbing a hill to get to the blood centre was probably ill-advised. The third alarm bell was the data suggesting that women with Endometriosis generally have slightly elevated cortisol levels: no one knows why this is (possibly due to the fact that hardly anybody cares…) – it’s merely accepted with some speculation as to the cause. While I was considering the evidence that my results may have been skewed by any, or all, of the above I heard the loudest alarm bell of them all – and it came, ironically enough, from another doctor at the practice.
…my heart would do its signature ‘THUNK’ for completely arbitrary reasons. Sitting, standing, lying – active or inactive my heart would stall
Palpitations have plagued me for a number of years; long before my health became a complete train wreck. They used to be a sign that my blood count was too low (and we know how well transfusions sit with me…) but as my health deteriorated they became less about my heart having to work too hard, and more about my heart having to work at all. Knowing the obvious correlation, I am always uber careful in ensuring that I’m always taking a ferrous supplement to keep my iron levels within acceptable parameters. Unfortunately for me, decent iron levels were no longer cutting it: my heart would do its signature ‘THUNK’ for completely arbitrary reasons. Sitting, standing, lying – active or inactive my heart would stall, leaving me feeling as though I’d received a roundhouse kick to the chest.
For obvious reasons I’m quite reluctant to visit the doctor’s office, often opting instead to contact them by email and wait for a response. This was the approach I took with the palpitation issue, making sure that I left no gaps in my description of the problem, and asking politely for ‘any advice’. Much to my chagrin I was told in the reply that I would have to be seen, in person, for the matter to be discussed fully. I dreaded having to explain why I didn’t believe stress hormones were the cause of my heart trouble, but it seemed that my options had been reduced to one.
Had the new doctor misread the the results?
My consolation was with one of the recent graduates who had actually taken the time to read the email correspondence. I described the symptoms I was experiencing and how their escalation was disturbing me. After a couple of minutes, he looked back at the digital notes on the screen. “ Your last set of bloods…”
“ Uh-oh,” I thought, “here it comes.”
“ Came back normal, so…” Wait, what? The consultation continued and he stated his previous point again “ As I said, your bloods were mostly normal. Your ferritin is a little on the low side, but…” There it was again – or rather, there it wasn’t. Absolutely zero mention of high cortisol levels, although that would have been the most obvious cause of those unexplained palpitations. At the time, it was merely a surprise, but as the day went on it raised more and more questions. Had the new doctor misread the results? Had the previous doctor mixed up my results with somebody else’s? Was I currently living in my own personal episode of Sliders?
Not trusting my own interpretation of events, I asked my sister to analyse the situation. She agreed that it was indeed odd that one doctor would use the results to diagnose a mental illness while another would state that the results were unremarkable. With that corroboration, I knew that I had to find out what the actual results were.
…always ask for a print out of the results while still in the office
I initially went down the traditional route of sending a Subject Access Request, believing that my curiosity could stomach the wait. A week or so later I sent the obligatory follow-up email and attempted to sit, patiently, in the dead silence. During this strained wait, I mentioned the discrepancy to my (truly wonderful) osteopath, who gave me some sage advice about how to acquire blood test information, if I felt that I wasn’t being given the whole truth. He stated that I should always ask for a print out of the results while I’m still in the office and, if they are unwilling to do that, ask for the values of any test I was particularly concerned about. Realising that I had nothing to lose but the price of a phone call, I decided to attempt to get the true results of the cortisol test from the reception desk. As I had only been to the practice twice since the Anxiety debacle, my results were still ‘listed’ as recent, even though the tests were carried out last summer. After being given the number 561 I thanked the receptionist and began the research to determine which of the doctors was telling the truth.
The figure I was given was a measurement in nanomoles and, unfortunately, the first website I came across that was using that quantification was WebMD – a site that can almost be as alarmist as the Daily Mail newspaper. The values they quoted (138 – 635) showed that my levels were, indeed, within the normal range; but I knew I had to source a ‘second opinion’ before I could take those numbers as definitive. The jackpot was hit when I came across primarycaretraining.co.uk. There sat a PDF of laboratory tests, complete with their normal ranges; and there it was in black and white – a standard spectrum of between 140 and 690 nanomoles. Sure, 561 is clearly over the halfway mark but, knowing what I do now about how the test should have ben conducted, (plus the elevated levels in Endometriosis sufferers) I’m positive that my system isn’t being flooded with stress hormones. Why the doctor was so insistent on handing out the diagnosis that he did, with false information to boot, is still a question that needs answering.
To be continued, I hope…