h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

and, so the collection grows. as I told both my endocrinologist today, and the phelobotamist today, at hospital.



12 vials of blood they wanted! - for once my vasculature cooperated and gave up the... 35 ML or so blood that this was... The girl taking blood had to run from one side of the hospital to the other, to get a special 'flask' for one of the vials, as it had to be kept at room temp

My endocrinologist thinks I may have a new disease... - not had a new one for... Oh, I don't know... since the start of last year I think... - she thinks I've got Raynord's disease...

Endo also looked at the computer... saw my recent results from cardiology... - we've not seen them. I think there may be some new news on them - endo is going to send us copies of the letters; but, one would think cardiology might occasionally think to tell me if there is a change, or something new, in my life threatening heart/vascularature condition

indeed. Best of to you

You'd have thought, in an age of so many, varied, and many effectively, free methods of communication, a Dr at a hospital would be able to notify a patient that they've got an illness... or, of their test/blood results... but, seemingly not

cardiology seem particularly bad in this respect. after they diagnosed my aortic bicuspid valve, and dilated aorta, both of which are life threatening, and which require lifestyle modifications and precautions, to avoid randomly dieing, - they didn't tell me for months afterwards... during which time I'd been doing most of the stuff I'm not ment to do I wonder what else they've found wrong with the heart this time
looking through some stuff about raynords, looks likely I've got it, as the 'secondary form', due to the chemotherapy drugs, which, basically I knew anyhow, so hardly a new diagnosis... all rheumatology might offer, when I get refered there, is a bunch of meds, to 'treat' it, a couple of which I already know, having looked, I can't take, due to having taken them before, and they make me so hideously ill... and some of the others, I think might be not recommended for me, as they could potentially afftect my heart stuff and, TBH, I don't fancy more of the mild sideeffects; oedema in legs, etc... took me long enough to get rid of that last time, and they didn't even know what caused it then, and their only treatment, had the opposite effect on me, making me retain more water

I'm reducing drugs ATM; have cut out the melatonin, and also of now, cutting out the proton pump inhibitor; I think with changes in diet, and changes in body shape etc, I just don't need to prevent acid reflux... as, well, I don't get any - and the proton pump inhibitors have their own side effects, not least affecting nutrient absorption, including vitamins, minnerals etc - I've already been able to stop using eyedrops every day, as my tear glands seem to have spontainiously started working again (so, may be due to thyroid meds, or perhaps even Growth hormone, or just time to repair since chemo killed the glands (if indeed it was the chemo, and not the hormone stuff)

well. if your going to have pathologies, you might as well have complicated ones

Sorry about the frustrating lack of communication but that is good news that some things have improved for you

thanks... Honestly, I think the gym, exercise, and changes in my diet, have done more than any drugs, for my general health... - the GH made a huge difference mind, and testosterone... well, has some benefits, sometimes, even if long term its pretty horrible to think of bits of my body just vanishing as they atrophy
Its still the thyroid and steroids meds that are just... not making sense... but hospital don't seem helpful or willing to help untangle anything more than their initial diagnosis - at least with the exercise now, I've a lot better chance of surviving the heart surgery which will inevitably be necessary, when the risk of the aortic rupture gets too high... though to put it mildly I'm not much looking forward to the idea of open heart surgery, having my sternum cracked to get inside... etc - more scars no doubt

still so unsure about the bisphosphonate treatment for the osteoporosis, - I did all the stuff your ment to improve bone density; calcium, K2 MK7, D3, Magnesium supplementation, high calcium diet, lots of weight bearing exercise, lost weight, taking all replacement hormones that affect bone health (thyroid and GH and testosterone), plus, as blood tests show, have calcium, vit D, and the bad bone hormone PTH, all where they should be... - plus I'm on a seriously low steroid dose (bad for bones), yet... they won't do a bone density scan now, before I start the bisphosphonate treatment... - I can't see their logic... without a starting point, how will we know what effect the meds have had? - in a year and a bit, I've entirely transformed my body; thinner than I was when I was a stone lighter, more musculature than I've ever had, even when a teenager/early twenty's, fitter than I was, ever before... surely the affect on my bones oughta be noticible, as it is on the rest of my biochemistry, physiology etc (lowered BP hugely, lowered resting heart rate by 20 beats a minute, etc...) - if after I've spoken to the osteoporosis nurse, I've still concerns over side effects, I think I'll say no to treatment; and then see what the results of the bone density scan are, in Febuary, when I've already got an app for a scan then reconsider, or not, starting treatment

just a bit fearful at the moment, at what horrible things are now wrong with the heart, but I won't know that until I get the letters through from endocrinology, that cardiology didn't send me

Sounds like a good plan.

Yes indeed - the rushed diagnosis for the steroid stuff was strange enough, and you don't want another rushed diagnosis... As it has been so long since osteoporosis was first mentioned and so much has changed since then, it will be much better to get a proper baseline if you're not happy with what the osteoporosis nurse says

I just wish it was possible to get re-tested for the hormone stuff, esp the steroids/cortisol... but its tricky or impossible once you've spent enough time on them, to retest, easily, and the hospital seem reluctant