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

Awww.... my poor poor cordaroid clad endocrine professor/Dr....
He's so not up with technology.... I'd go as far to say that I think computers frighten him...... so it was so* amusing... at the endocrine appointment, Friday.... ----

He declaired with glee, that he'd cleverly plotted my testosterone levels from the pre-injection measurements ... - he'd just written them down and tabulated them - although it did demonstrate a gradual rise in levels between each injection (as my origional testosterone reading was effectively zero, the first injection had basically entirely run out, by the time of the second... subsequent times my starting level, immediately prior to the next injection, was slightly raised each time... - they'll keep monitoring this, so will be interesting to see what my level is on the 8th, just before my next IM injection of the nabido.)

Having said which, I still get symptoms of low testosterone, before each injection, even though I'm theoretically just within normal range now, on the last two times before the IM injection

Oddly, something I'd not realised, and the Drs had usefully not told me, is that due to taking exoginous testosterone, my jewls will eventually atrophy to nothing as they're not having to do any testosterone production duties theirselves
Doubly interesting, is, how with the 8-weekly injections I get, due to it being such a huge amount of testosterone in one go, the body can't quite handle it all; insufficient testosterone binding protein to mop it all up, so the body converts more than it would, for a normal male, into oestrodyle/oestrogen. which goes some way to explain my increasing err cup size

The prof is.... really not 'on the ball' himself.... a total typical scatty scientist type, truth be told....

"so, 2legs have we done a bone density scan?"

err. right. yeh, your asking me, so you don't know? - don't I have any hospital notes...

I'd have thought there would be a very clear protocol for treatment, really, almost a plotted graph, of do X at point A, y at point Z, etc.

Turns out, having done my background reading in journals, that being on hydrocortisone for prolongued periods (more than 3 weeks), is bad for bones. 6 months plus and average 10 to 15% reduction in bone density. - I was on hydrocortisone for a year and a half, and not one person told me to take calcium supplimentation; I am now (taking Vit D, calcium, magnessium and zinc).

so. yes, logically, you want a starting measure of patients bone density. - a year and half after treatment began, is not point zero. IMO.

the prednisolone I'm on also causes minneral loss from bones, teeth, hair, nails, etc. which is... annoying.

So, Prof to organise a bone density scan.

I managed to get a few words into him....

"you have penitious anemia?" -- "yes, Prof, you diagnosed me with it; my origional blood test showed positive for some of the antibodies....)

OK. so made him re-aware of that. finally going to do a B12, folic acid test again (not had that tested since some time last year, when after months of folic acid tabs I was then within normal range).

I think I persuaded him to measure my Vit D, too, and iron. which is useful.

So, multiple bloods to be taken before the testosterone/nabido IM on the 8th, for testing Vit D, B12, Iron, free T3, free T4, TSH, testosterone, and probably other stuff too

oo, and I was rather supprised that they are indeed measuring free T3! as a lot of the NHS only measures TsH and free T4.

(OK; TSH is thyroid stimulating hormone, made by pituitary, to tell the thyroid to release thyroid hormones; T4 is thyroxin, which is converted to the active form, T3 (triiodothyranine) in the tissues; tablets I take are just T4, so measuring T3, will actually show what bio-availible thyroid hormone there is, and show If I've a problem in the conversion process)

hmm. do we have a guide entry on the thyroid gland?

Then, they may increase my dose of levothyroxin, the T4 drug I take.

Also, looks like we are starting with growth Hormone; I shoudl be shown how to self-inject (which I'll have to do daily) on the 8th...

Think that is about it for now, other than to mention my oedema seems to be spontainiously reducing...

Many of my learned friends tell me that the bureaucracy in universities and equivalent institutions of higher education are the worst kind of bureaucracy on this planet. My children confirm this. Especially my daughter. And since she has studied in both Denmark, Singapore and Kenya, she speaks with some considerable weight.

However, I now have doubts. Maybe the health care bureaucracy is just as bad?

At least it seems that when university bureaucracy and/or health bureaucracy meets with information technology things usually go seriously wrong.

Doesn't make things better when doctors can't remember and/or can't be arsed to read patients records before you meet them. A doctor sent me to a special investigation because the standard procedure could not be performed. When he saw the results of the special investigation he wanted to send me to the standard thingy. The nurse and I looked wonderingly at him and each other, and then she very educational made him aware why I was sent to the special investigation

oh... absolutely... - I think my endocrine specialist nurses are more on the ball than the Dr/Prof is TBH.... - if nothing else, they just remember me, and 'my case', without promting in many cases - it was the endocrine nurses who agreed with me I was hypothyroid; resutls had shown this since March last year.... I kept asking the Dr/Prof.... and he say no.... the nurses looked at the results and agreed with me, they put pressure on prof, and eventually this year I started on replacement thyroid - it was my basically breaking down on the phone, to the specialist nurse, that eventually galvinised the prof, to write the letter to my GP, so I could switch steroids, soemthing he'd already agreed too, a couple months earlier, but just not put into action

the communications and cooperation between departments, and commmunications from hospital to patients, here is just broken; the UK has failed to update and modernise its computer systems after a very high profile messed up attempt to get a new computer system put in place... - I get letters, along ethe lines of:

"your consultant has refered you for a.... X-ray... CT scan... PET/CT....investigation ......", where it doesn't say which consultant?!; oncology? radiologiy? neurology? neurosurgery? endocrinology? - the letters then go on, to not tell you where the scan is to occur.... withiout knowing its oncology or neurology, or endocrinology, we can't know which scanner it is - heck even oncology sometimes use scanners in other parts of the hospital (hence I have had a CT scan in maternity before) - I've no idea how patients with little background knowledge of medical matters, and/or biology, or indeed an ability to take charge of it themselves, manage to get treated... its such a mess, and, really, its all just a mess because of the admin.... which really oughta be the simplist thing in the world to fix... - the admin isn't brain surgery afterall... the brain surgery is brain surgery however, and I don't recomend it much TBH

It's a simple problem, really. You see, when there are issues with administration and bureaucracy, they throw more administrators and bureaucrats at the problem. When that doesn't fix the issues, they throw in even more administrators and bureaucrats. Then, of course, the system runs short on funding so they throw more bureaucrats at the funding issues, and so on, and so on, and so on.

exactly.... about half the staff working in oncology outpatients seemed to be admin.... and they then didn't even do a very good job with however many dozens of them there were The problem here, with the big hospital in the city, is .... that it is one giant hospital.... sure, its one way to streamline services, and save money, but not the only, and in reality it wasn't ever planned to be this big, it just grew and grew and grew... and I think its thew wrong model really; as it stands, the hospital is so short of space inside, and various new thigns haveing been added etc, some bits are just clearly badly designed layout, and others just have no room; sitting waiting for my chemo drugs, in the 'waiting area', in outpatient oncology... with dozens and dozens of others... and... it is so* hot your feeling ill before they even stick a needle in ya

I think it'd be better served on a modular system; as it is, streamlining services can work with things like one giant flabotomy unit, serving, say, several specialility departments, rather than having a seperate flabotomy in each (some do have their own one, for various reasons connected to the specialism.... and, maybe it oculd work with some centralised services, like X-ray, scanning/ etc, flabotomy, but just not with the way the hospital has ended up being laid out, as its expanded, bit by bit by bit over decades but, instead, I tink doing it modular might make more sense, with a logical but less 'all in' grouping of specialisms around central aspects like flabotomy serving a few connected specialisms maybe even get the admin simularly divided up, might make it work somewhat easier...

I was in hospital yesterday and although each member of staff did introduce herself, they were rubbish at explaining what they were doing and why. I've now got a bit of titanium in my right breast but I'm not entirely clear why, only that it won't set off any airport scanners (that's the bit of info they *did* give me, which is of no use to me because I've no plans to fly anywhere).

They said they liked my hair, so, y'know, they were friendly and stuff, and what they did wasn't painful. But... I don't know, hospitals are weird.

Mol

I had titanium in my right breast last year, until they took it out this january! it'd been in there over a year I think.... now I've got a bit of titanium that used to be in my right breast, on a necklace, as a pendant.... its purple! that was painful though... but luckily I was out of it when they put it in as I'd just had a hemoridge, and despite their wanting to do it under general, I made them do it under local, but I can't recall that... they took it out under local, and the anasetic had worn off before the end, as it was tough to get it out as it'd basically become part of me.

I'm odd though. I found feeling the insescions and the device being torn from my tissue, an intesting sensation, and as i was busy chatting to the Dr at the time about Sweden, I didn't bother telling them the anasetic had worn off sadly the scar hasn't heeled very well, as my body can't really repair tissue due to lacking th the growth hormone still at th e moment (it was a portacath that was in me, BTW) - so wish I'd asked to keep the titanium valve I used to have in my brain/skull.... it'd be cool to have them both now

The problem is hospitals are used to issuing letters to people dealing with, eg, cancer, OR thyroid issues, OR pregnancy (). If you could just be a good little 2Legs and ask them to deal with one issue at a time everything would be much smoother. For them anyway.

Do these people not have to deal with patients whose bodies work as a whole rather than as a series of non-interconnected parts?

Deb

work as a whole?.... or.... doesn't work as a whole... as is the case for some of us <evilgrin. todays a good day. no idea why... didn't sleep particularly well, but my brain isn't tring to work backwards through fog and treacle today in the way it useually is, and not every muscle in my body hurts think the oedema may be down more too, again, in my legs and ankles/feet I've not got many departments or clinics left now, at the hospital to visit.... I've had scans in maternity for some unbeknown reason last year and when I had the adrenal crisis in May, they threw me onto a ward full of down and out alcoholcs on the liver ward for no partifular reason - if only I had a loyality card... just think of the points I'd be collecting up....