It’s really been a bit of a shitstorm since the last post, where a lot has happened quickly. Faced with very few options, I asked my friend if he would see me at his clinic and help me to order tests. I saw him, he listened, and ordered me the tests, not because I am a friend of his, or because I am calling in any favours, but because he actually listened to me. He’s a good Doctor.

I am now awaiting a bunch of results and an MRI & CT scan next week, and I am going a bit nuts waiting, frankly, because I really just want it done with. I gave a stack of blood on Saturday and my Salivary test results should be arriving tomorrow. I am really nervous about what they’ll show.

I received a letter last week from the Endocrinologist to my GP, which, predictably, dismisses everything based on some normal urine results and a suppressed dexamethasone test. His letter was clinical, non-committal and quite obviously acutely aware that I am pissed off.

Of course, with me having nothing to lose anymore, I decided to write an email that clarifies said letter.

I received a final letter from Dr Endo to GP last week and I would like this email on both files again please. I used to be concerned about being labelled as a nuisance, but I don’t care anymore because it seems to be happening anyway.

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I would like it noted that Dr Endo’s report to Dr GP is not my recollection (please note that my husband was present at this appointment too and can verify my account):

1. Cushing’s was never something I was “convinced” of. It is an idea, that I presented to my DOCTORS to exclude as a possibility. A single dexamethasone suppression test is not diagnostic for Cushing’s, and Australian Doctors are notorious for being backward when it comes to the diagnosis of it. This is exacerbated in cases of cyclical Cushing’s. I naively thought that Dr Endo would be open to an empowered, informed patient and suggested (at both the initial appointment and follow-up) to him that midnight salivaries (that I was self-funding) are often more reliable and that there are hundreds of proven cases of Cushing’s that showed normal UFCs and dex suppression. He interpreted this, quite clearly, as me being “fixated”.

To be fair to Dr Endo, he initially offered me a whole stack of 24hr urine jugs with lab forms to test when “high”. Unfortunately, the way that I cycle (having charted symptoms for 2 months) will make it difficult to catch and it can take years to get it. I suggested that either a) midnight salivary cortisol or b) midnight plasma cortisol would be a better indication (according to expert Cushing’s Doctors) for someone who cycles. I merely suggested something that would take 3 months over something that could potentially take years. I would think that I would get a say in how long I suffer with symptoms for, and that if there is an easier test that is quicker, I should be allowed to suggest it.

I am far too busy to be sick and want to minimise that time wherever possible. I have exams to sit, a business to run & 3 kids. I don’t have time to make up diseases.

2. In the appointment, Dr Endo specifically said that despite all of my ongoing symptoms, he was unwilling to do even the most basic of hormone testing, including thyroid antibodies, Vitamin D, Ferritin, Aldosterone etc. I also suggested an MRI & CT scan, which I said I was going to pay privately for with or without him. I have those booked next week, FYI. His answer was “then you’ll think you have Cushing’s”. I want to make it clear that I know that these tests are NOT diagnostic but add to the picture. I am merely collecting information so that the next time I see an Endocrinologist/Immunologist/Internal Medicine Specialist, I don’t waste my (or their) time, which Dr Endo clearly seems to believe I have done. I stated in the appointment that I am aware of the stats re: incidentalomas. But you know, if there’s a big fat tumour sitting somewhere that’s obvious… it might help.

3. When he said that I do not have Cushing’s, when asked, quite genuinely, what it could be, his words were “not my problem” “go back to your GP”.

I would like it noted that the appointment was demeaning and humiliating.

Now I am pursuing privately funded testing. I am ordering Midnight Salivaries & Adrenal Stress Profile Tests from Pathlab in Victoria. I am having a privately funded MRI & CT scan. And I am not seeing any other Specialists until I have the proof I need. It may not be Cushing’s, but it’s something. I am open to MS, Lupus, plain old Syndrome-X, or ANYTHING else that explains my symptoms.

I have a GP friend who knows & believes me and is helping with the testing, and a phlebotomist who can take my midnight bloods. I know a lot of Doctors & medical community folk and am finally pursuing Med School myself. I am not an idiot and don’t appreciate being treated like one.

GP, I will keep you updated. You are most welcome to call me about this if you need to or reply privately to this email.

Naturally, after the last appointment I was really, really upset and shaken and genuinely started to self-doubt. I actually spent 3 days, repeatedly asking Jason if he thought I was a hypochondriac and that it was OK if he thought I was. He insisted I wasn’t.

I also found out that someone I thought was decent was reading my Twitter feed and calling me a hypochondriac to anyone who would listen. Honestly? I don’t know what to think anymore. I know in my heart of hearts that it’s not true, but boy did it cut deep. I don’t blame her for being so nasty… at least she is brave enough to say it out loud, I guess. It makes me wonder just how many people are thinking it and not saying it, though.

But now, it really is just a process of exclusion. If the test results come back normal, then, for now, I am just going to give up. There are a couple of things we can test after Cushing’s, like for autimmune diseases and stuff, but after all of this stuff going on… I am just tired. I’ll just have to learn to live with it, and hope I get sicker so I get taken seriously.

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