Yes, I’ve had a finding of abnormal pituitary activity when I was a “mild” case. At that time I only had physical problems, e.g. muscle wasting/worsening with exercise, until rechallenge years later after which I severely crashed and developed severe neurological and sexual symptoms, and progressive atrophic changes. I have not had an MRI since.
I’ve given some thoughts in the literature review awor and myself provided in 2020 if you’re interested. O’Reilly et al. provided an important paper determining a role of androgen signaling in CSF pressure in IIH patients, and further demonstrated this in animal cell modelling:
"A central and potentially causative role of androgen signaling was recently demonstrated in idiopathic intracranial hypertension (IIH), which entails an increase of CSF pressure. O’Reilly et al. identified a pattern of androgen excess in female IIH patients. Like human choroid plexus, rat cells expressed AR along with androgen-metabolising enzymes. It was demonstrated that testosterone drove CSF output in rodent choroid plexus cells (O’Reilly et al., 2019). O’Reilly et al. noted that while a determinant role for androgens in IIH may seem biologically implausible considering IIH occurs less frequently in men, androgens are now known to exert sexually dimorphic effects on metabolism. The metabolic phenotype of hypogonadal men resembles that of women with androgen excess, including an increased risk of type 2 diabetes, non-alcoholic fatty liver disease and cardiovascular mortality (Ding et al., 2006; Kautzky-Willer et al., 2016). O’Reilly et al. suggest epigenetic modifications to local androgen action or differences in AR signaling in both sexes as a plausible explanation, with IIH potentially representing a distinctive manifestation of these sex specific differences (O’Reilly et al., 2019).
Interestingly, male IIH patients are more likely to have symptoms typically associated with androgen insufficiency including obstructive sleep apnoea, erectile dysfunction and loss of libido (Fraser et al., 2010). As well, androgen deprivation therapy or hypogonadism can induce IIH symptomatology (Valcamonico et al., 2013). Although in males the metabolic parabola of AR signaling is shifted far to the right compared with females (Ding et al., 2006; Morford et al., 2018), significant increases in AR signaling in men are likely to recapitulate this symptomatology, and we therefore consider it plausible IIH occurs in PFS and contributes to commonly reported symptoms, including feelings of intense pressure in the head.
In this context, it is of interest that the pilot study of Melcangi et al. evaluating CSF methylation in PFS patients and controls found only one member of the control group with methylation of SRD5A2, and this patient had normal-pressure hydrocephalus. The majority of PFS patient samples exhibited variable methylation of this gene (Melcangi et al., 2019)."
citations in original text.
Also @tab, please could you complete the survey? It’s important symptoms like yours are recorded in this data set, and every submission really helps. You can take it by clicking the graph icon in the top right of the forum when on a desktop or laptop. Thank you very much.