As part of the hopefully rare ‘reasons i haven’t posted’ topic, I will today be talking about Panhypopituitarism, a condition rare enough that it comes up as a typo. I have no formal medical training outside of the girl guides, but have over a decade of medical experience to draw from. I have not written anything which I do not know to be true from that.
This is not a fun subject, but I felt the need because it isn’t really a discussed one either. Having said that, I understand if you want to skip it
What does that really long word even mean?
pan= everything/universal hypo= under(active) pituitary= the main gland, located towards the base of your skull ism= a specific pattern or system of behaviour put together, that basically means that the main gland underperforms. This is typically quite mild, but is classed as a terminal in extreme (and thankfully too small to count) circumstances.
What should the pituitary be doing? This is a bit convoluted, even to professionals. The simplistic ‘I-don’t-know-all-this-jargon’ answer is it basically tells the hormones when to produce and how much, though I suspect that there’s a bit more to it. It also sends certain messages from the body to the brain, such as that your bladder has become quite full.
How can I tell that it’s misfiring? The short answer is that you probably can’t.
The longer and more involved answer is that it’s extremely hard to diagnose, due to the seemingly random way that it manifests. Depending on the severity of the condition, it is extremely hard to spot and may look quite different in individuals suffering to the same degree. Just because it is all malfunctioning, doesn’t mean that it’s all malfunctioning to the same degree. And since manifestation of symptoms can vary from being a little shorter than your parentage would usually suggest to not being able to tell that you’re hungry and (my personal fave) talking a mile-a-minute, then not being able to think of basic words it can be extremely hard for even a specialist to diagnose. The good news there is that the more severe it is, the more symptoms fit together and so if it’s missed by a specialist you can be very sure that it’s mild. I’ve found neurologists to be excellent, and I was initially diagnosed by a GP whom had previously seen it once in 20 years.
so I should go to my GP if I think I have this?. NO! If you feel significantly unwell, then see your GP as a general principal. Please don’t go to them saying ‘I think I have this condition’, though. This is leading the witness, and while it feels helpful to tell them what seems most likely I’ve typically known it to be misleading. It undeniably takes longer to diagnose an unspecified condition, but it’s far more likely to be correct.
I say this as someone whom would prefer never to go to the doctor’s, and would ideally like it to be over as soon as possible. Experience tells me that works better to make the suggestion if the source of your illness continues to go undiagnosed. There could be twenty reasons why you keep going dizzy, for example, and it’s natural for your GP to also want to steer towards the one that you’ve just named so knowledgeably.
How is it diagnosed?. I have good news here, too. It’s done via a home-testing kit in most cases; for either thyroid or adrenal gland, depending on which seems most severely affected. All the documented cases of the condition that I’m aware of show that significant symptoms will always manifest strongly in one or both of these glands, and it follows that if the condition is not picked up by these tests then it is fairly mild. I had links between poor function of the three glands show up extremely vaguely for nearly a decade before it became developed enough to justify attention.
So what causes it? This is extremely hard to pin down, and the only condition with an undeniable link is Pallister-Hall Syndrome. Please do not think that having one condition guarantees the other, though, it just means that it’s more widely known that it can happen.
In my case, most of my medical conditions stem from being short of oxygen at birth. Some developed quickly, and in this case the gland tests would not have needed doing if they hadn’t been trying to diagnose epilepsy when I was 11. Panhypopituitarism (which I honestly have so much trouble typing that I paste it in each time) only became severe enough for diagnosis at 22.
How is it treated?. This is essentially a hormone disorder, and so it is most often treated with hormone replacement therapy. Depending on which hormone you’re most deficient in, this is most typically in pill form but may also be via injection. If you [insert fave search engine] the condition, you will probably find repeated mentions of surgery. I would like to reassure to that this is infinitesimally rare, and typically stated only to make you aware that it is a further option if needed. I’ve never needed surgery, and my neurologists don’t know of it specifically having been done.
What’s the weirdest way it’s affected you? Panhypopituitarism manifested as merely an increasing irregularity in estrogen levels until it became recognisable, and that became so well controlled with [redacted, as you should talk to your GP first] that I completely forgot how bad it could be until I became convinced that I could do without (admittedly, a lack of funds held sway here). I went back on them, and all was swell again. I much later came back off under the supervision of my doctors, and have been off ever since. I would still get the symptoms, but was more accepting of them and hormone levels also alter over time so it’s quite likely that it was no longer so severe. When I asked the experts why I reacted in this was, I was told that my naturally high testosterone levels essentially battle the estrogen as it tries to come through more.
It should probably be said at this point that I’m physically female, but my testosterone levels are naturally higher than some get once hormone replacement therapy starts to take effect. I am transgender, and since gender identity is established before birth it’s been theorised that my hormones have essentially been trying to balance that way.
I think that’s all needs saying, but do ask any polite questions that I missed