Ooooer, it’s getting even more ‘interesting’ around here.
Right, are you sitting comfortably? Then I’ll begin…
On Thursday 18th July I fronted up to the hospital for a short synacthen test – to test adrenal function. First thing consultant asked me when she sat down was ‘Do you have allergies’? DUH! I could even see my referral letter in her hand from my chest consultant stating, amongst other things, ‘likely ABPA’ (allergic bronchopulmonary aspergillosis). So I kinda think the clue’s in the term? Had she even read the damn letter? So then she said she didn’t want to do the test because it can be dangerous for people with allergies. Er, so why am I here then??? Grrrrr.
But she did do a cortisol and various other blood tests. She said that if the cortisol level came back normal, then that would prove that my adrenals are functioning fine. But what about, I asked, for instance, DHEA? Dehydroepiandrosterone is an important steroid produced in the adrenals, gonads and brain, and needs to be in balance with cortisol. I also asked about aldosterone, another adrenal hormone.
I had taken with me the results of a recent salivary adrenal stress profile that showed poor adrenal function overall, and with very low DHEA. Prof Lolin seemed to poo-poo all that.
I had a follow-up consult with her the following Tuesday when, rather to my surprise, she said she would test for DHEA and do a renin/aldosterone test and wants me to do a ‘lolinogram’ (obviously devised by herself) – 24-hour urine collection with blood test to check fluid/electrolyte levels. She seems convinced I might just need to up my salt and water intake. Hmmmm, we’ll see.
The suspicion is I might have – wait for it! – hyperreninaemic hypoaldosteronism. In other words, too much renin, reducing aldosterone, which is needed to regulate sodium, potassium and blood pressure. I do have chronically low BP (as many of us with APS/Sjogren’s do) and low sodium with high potassium. Plus an awful lot of the symptoms fit. Oh, I’m also using a home BP machine to take readings several times a day. Hang on – must do one now. (105/65, pulse 84. That’s high for me, but then I had just done a ventolin/hypertonic inhalation and that can make you a bit hyper for a while.)
Interestingly, Prof Lolin herself has hyperreninaemic hypoaldosteronism. She asked me what I would plan to do if I do also have this. (You’re asking ME?) Because she said treating with fludrocortisone (florinef) (our old cat was on this!) could have negative issues for me. She went into great detail about why and I fully understood at the time but of course now can’t remember a damn thing! Though I think it was something to do with beta blockers. Which is weird, cos, with low BP I’m hardly ever likely to need beta blockers. And in any case, I already know they make me very ill. Anyhow, I’ll ask again – and take a cassette recorder with me next time! Prof Lolin says she just watches her salt/water levels and has learned to live with it – but maybe that’s easy to say/do if you haven’t also got autoimmune conditions to cope with.
One issue is that I’d only been off steroids for 2 days when the cortisol test was done and there is some debate about whether that’s long enough to ensure an accurate adrenal assessment. I shall await all the results and if I’m not getting satisfactory answers I may well go to my naturopathic doctor and see what she suggests. Tests won’t be done till mid-September anyway!
Oh, and btw, am back on a low level of steroids (only 3mg/day) because it seemed prudent following my bronchoscopy on 24th and because, in any case, I find I feel considerably better on them, dammit. Will review following Brompton tests at the end of August.
Over and out 🙂