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

as in, my new red dress Got accused of being 'you didn't need to get all dressed up to visit', earlier

Removed the purple nail varnish as it was quite chipped in places, just resculptured nails, and did my cuticles, shall have them revarnished tomorrow;

We went to wicks today to get the quote and see the design for the new bathroom

Oh. yes. - we suggested a couple of changes, not having the cupboard unit in the corner, instead having a wire/mesh thing at the end of the bath, in the vacant space where boxing meets, to fill in the area at the end of teh bath, and adjecent to the boxing where the pipes and stench pipe etc, are behind, which will then hold all the flannels, sponges, shower bottles shampoos etc, in a position one can just grab them whilst in teh bath or shower.
Going for bath again with shower over; as there is no room for a seperate shower cubicle. glass pannel door on side of shower/bath though, so we can ditch the curtain and the stupid rail that never works. tiled all the way round the bath, and hafl tiles on wall behind basin and the wall behind toile, with painted above; plus new plaster work there, as the existing tiles are all coming off, tank BoB.
Nice smaller basin, so it doesn't steal so much of the floor area, and a toilet and citistern that looks like its been designed rather than just randomly thrown together; none of the random folding lines of the loo at the back, just designed for dirt to collect, and a lot smaller cisturn and the overall unit is smaller and mor eflush with the wall and floor which is good. space at side of the toilet, where there is currently a cupboard will then leave enough space for the small bin, and probably a laundry basket smaller basin has cupboard underneath and the outer aspect fo teh basin is square but with an oval interior; I think they're often called 'WC basins, as they're just closer to the wall, longer than it is deep, which makes more sense than the massive basin we have ATM.

we're gona have the wall above the basin purple the other wall behind the loo white, white cealing, and mainly white for the tiling I think, though not decided on tiles yet.
Ordinary mixer taps on bath, with no shower attachiment, and two 'taps' on the wall one for temp one for pressure, for the shower head, on a riser on the wall above the bath and shower taps, with a larger shower head, that actually adjusts properly so it drops water straight down, rather than towards the back of the bath

Purple is definately the way to go for the bathroom; all the towels and flannels are now purple, and we'll source a purple matt at some point for the floor

Quite pleased with the price, and am thinking we may well go for their quote but have a couple more to view first. about half the price of the origional quote we had, not long back, from the posh firm who ignored everything we said, and who wanted to put in a towel rail costing the best part of £500

Oh, and back to the red dress. after the visit to the DIY store, we went to the suparmarket near there, got some decent ham, wenslidale cheese, minced pork for a chili later in the week, and I got some more body spray as it was on offer, and .... A bus red nail varnish which we'll put on my nails tomorrow, after they've had overnight with cuticle oil and moisturiser to get them ready

Oh, and I'm back on the levothyroxin now, have been, since... err, today is third day taking it again; Heard back from the new endocrine nurse ( the growth hormone specialist nurse), and I can't start the GH injections as my thyroid is almost off the scale at the bottom end; I did ask isn't it then odd that I have no symptoms of being low, like feeling cold, or lacking energy... - more energy since I stopped it than I had whilst on it true I've got the weight gain, but that is the steroid, and probably GH lack accountable TBH.
So, back on a lower dose of Levothyroxin, to hopefully avoid the horrible side effects. Diorrea started the first day I started taking it, but not quite to the level it was when on the 75 McG a day ... yet More brain fog reappeared back again, too, now I've started takign it again, but again, not so bas as when I was on 75 McG.
They'll test my T3 and T4 on the 3rd October, as I'm in that day for my next testosterone IM, and then I may have to increase from 25 McG to 50 McG, or perhaps alternating doses day to day of 25 and 50 McG, and they will then test the T3 and T4 again. -- So one benifit to my stopping taking the levo, without Dr say so, is that they're bothering to monitor my levels now, and adjust dose rather than putting me on 75 McG, and without asking me how its going, tell* me, 'your fine' by looking at my bloods, in isolation from my symptoms and side effects.

MmMMM.... I can smell almond oil cuticle oil

Good to hear they're planning to do more monitoring of you and hopefully find more out... When I read what you're going through I still think of the person I read about who had nothing detectable in his blood, but the substances were all in his cells instead...

The bathroom sounds good. I know what you mean about the posh firms - I got a quote from one of those, and the salesman tried to pressurise me into signing up on the night because it was 'half price' but I wasn't totally happy with the design. I then went somewhere else and got a design I was happy with, plus it was half the price of the 'half price' offer!

Oh, most firms are like that in some aspects.... - even today, there was the 'this is the price now', quote, and then... but our half price sale restarts in four days, so I'm putting that price here too... which is oddly half the price... - I can't imagine anyone paying over £10 K for a bathroom; in the size that ours is! its tiny!

oh, that 'in the cells' thing, can be so true; half these hormones, like testosterone etc, are not often 'free' in the blood; instead they're bound to 'carrier proteins', and suchlike, so it can so depend on what they're measuring... - lke with the thyroid levels; most of the Drs and all GPs I think, only go by thyroid stimulating hormone levels; which doesn't tell how much actual thyroid hormone is in blood; however, as I don't make hardly any TsH, they're basically ignoring that, which makes sense; then they'll measure Free T4; the inactive version of thyroid hormone; which is the type of thyroid hormone, my levothyroxin tablets, contain a synthetic version of; this is then converted by the body to T3, the active form... at least my endo Drs seem to always measure my T3 and T4, and want both in range... but, range is a population range, and is so big, its meaningless, which is why they're ment to take into account how it is working in the patient; I.E., censation of symptoms etc, as well as just the raw figures of the level etc.

the weird thing is, though, the only replacement hormone I've yet had that has worked as it should, in terms of observable changes in me/my body/how I feel, is the testosterone, and as oncology lied to endocrinology, that could still all be down to the chemo drugs, not the hypopituitarism.... - I never had any symptoms of being low on the steroids, and indeed, only ever had the lack of steroid induced adrenal crisis after I started takign it!- the effects I got from the hydrocortisone, was totally opposite to what should happen....

if I'm steroid deficient, I should wake up, hardly able to move, almost unable to get out of bed, and desperate for the steroids, and feel more energy on taking them, etc; I feel fine in the morning until about 3 minutes after I take my steroids.... - simularly with four stone of weight gain now, I've definate symptoms of over-replacement yet I'm on the lowest possible normal dose for hypopituitarism - Drs can't figure it out... or rather, can't be bothered to figure it out, which is the annoying bit... and I can't fathom it either, which is doubly annoying, as if I wasnt' on the drugs, I'd be thinking so much better, I think I'd have a go at working it out better than the Drs seem able to do

I just ish they'd done the proper diagnostic insulin tollerance test (for the steroids), back when they shoudl have, rather than relying on a single point measure of total cortisol in my blood; I do keep telling them I don't have a serkadian rythm like normal people; a 9 AM cortisol reading is like the gold standard; 9 AM is a meaningless time to my body, it doesn't necessarily 'know' that is it is 9 AM; I'd not at all be supprised to find my natural high point on the cortisol production, were I making it, was more like midnight TBH or 8 PM or something stupid like that

Of course, now I've been on the steroids over a year and a half, my adrenals should have basically packed up entirely and no longer be able to produce steroid/cortisol, assuming they were recieving the upsream signal from my pituitary so now I can't retrospectivly have the proper stimulation test, for cortisol production

I'm not doing too aweful, though I think, compaired to 'normal' panhypopituitary patients; exactly because I don't actually get symptoms of the condition at all, cept thouse that started on my begginning taking the medication for it... - with the exception of testosterone. Its quite gauling to have virtually no labido or drive anymore, a huge section of my personality and persona just vanished, with nothing in its place. - also the prednisolone steroids help reduce labido which is a nice side effect they never warned me of. - I'm still trying not to pin all my hopes on the growth hormone fixing eerything but, sometimes people can find it a really transofrming medication in treating panhypopituitarism... we'll see... - I'm half minded, if the testosterone can't be given better, more regularly with my having higher levels (they think becasue I'm on low end of normal for my age, that I'm 'normal'- I'm so* low, but they won't budge); I might just give up on testosterone all together, and go onto oestrogen/oestrodyle, and just complete the change, maybe they'd be better then, at treating with female replacement hormones Afterall I've been male for nearly 40 years.... maybe a change would be a nice break from the mundaine day to day...

I still need to find a cordaroid dress; the endocrine professor only seems to own two pairs of trousers (all the staff including in differnt departments joke of it); he has his summer 'slacks', and then his autumn and winter cords - I think I'd get the nurses in hysterics if I turned up in a 'professor styled outfit of a cordaroid dres.... - preferably with long sleeves so I could attach the geography teacher styled leather elbow pads to it )

I'm enjoying life a bit more, ATM, for some reason.... enjoying some things that I didn't for a while, like really getting back into cooking - still no concentration for reading etc, but give me a pile of laundry to sort, from the tumble dryer and I can happily spend an hour or two, sorting and folding it

Sounds like you need to see this guy http://www.bbc.co.uk/programmes/b07w52tp Dr Chris van Tulleken - he seems to be in favour of the "if it isn't helping, don't take it and find something else" school of thought...

" I never had any symptoms of being low on the steroids, and indeed, only ever had the lack of steroid induced adrenal crisis after I started takign it!- the effects I got from the hydrocortisone, was totally opposite to what should happen...."

I still can't believe that didn't make your doctors sit up and take notice, but they do seem to be obsessed with that single point measurement

Good to hear you're enjoying towel folding again, though

Love the idea of the corduroy dress with leather elbow pads

I see there is indeed such a thing! (with sleeves rather than with elbow pads ready applied) http://www.etsy.com/uk/listing/250294201/80s-adini-dress-brown-corduroy-dress?ga_order=most_relevant&ga_search_type=all&ga_view_type=gallery&ga_search_query=corduroy%20dress&ref=sr_gallery_1 Fascinating!

I honestly can't understand my Drs attitude sometimes, well, often. - I was doubting my own sanity due to their inability to resond appropiately to thigns I said to them;

I, well, anyone, can go to the drug manifacturers websites, and read about side effects of the medication, some of which have a rather worring 'requires imediate medical attention', label attached to the side effects.

I was getting multiple of these severe side effects to the hydrocortisone, yet they only listened to me, after I was hospitalised (when I nearly died on my wedding day), and then subsequently had to phone them, to remind them, annd I broke down on the phone to them.

I was getting hallucinations, suicidal thoughts, desire to self harm, from the hydrocortisone; along with massive hypoglycemia episodes which left me unable to talk most mornings when I took my dose; feeling faint, dizzy, barely able to move; told them... "carry on takign the hydrocortisone", is was their only response.

The prednisolone (the new steroid I'm on), doesn't have any side effects anything as severe for me at least, though long term, its more dangerous; causes dementure and brain dammage, and can do very nasty things to one's stomach and lower digestive system. which is why, I've now spent a year and a half telling my Drs I have diorrea. they don't do anything about it though, and won't examine me or anything.

Exactly the same in fact, for the heart palpitations I'm having, which could have multiple expliations; too much thyroid drug, or conversely too little.

or, of note I think, as a side effect of steroids it can indicate increasing oedema (which I have), lowering blood volume, and eventually this results in congestive heart failure.

they won't examine me. I can't do anymore than tell them I'm ill and beg for someone to listen, but they won't.

I think if I were you I'd be tempted to turn up at a random hospital a long way from home, fake a faint then claim memory loss. Let them start from scratch and see what transpires.

Although maybe that would be dangerous. And miserable, too, actually, as obviously no-one could be with you or they'd have to spill your various conditions and drugs.

But it must be so frustrating. They do seem to only be able to focus on one thing at a time, like you're made up of a series of little isolated boxes rather than one teeming mass of connective tissue. It's frustrating enough for those of us just reading about it, never mind actually living it.



Deb

Oh, and thanks for mentioning that programme, Sasha - now I'll be spending the afternoon in a lustful reverie Chris van Tulleken

One problem is that once the Dr[s] have made a diagnosis... that isit, no turning back... they'll never undiagnose and have to admit they got soemthing wrong.... I'm not sayign they are wrong, I know all the blood tests, and indeed scans on my pituitary tend towards showing it being defunct but, my symptoms haven't always matched that, and it does seem an aweful coincidence, a dammaged pituitary from a hemoridge in 1994, suddenly choses to go wrong, just as I start treatment for unrealted cancer... too much of a coincidence - the second hemordige I had last year, is unconnected to the pitutiary, and indeed the cancer, which again... seems odd... - OK, so they had a weird idea involving sodium (I was very low), and that being tied up with the second hemorridge, but... no one is joining up the dots which is puzzling... and I've never been followed up after the hemoridge last January, they've just forgotten about that (of course its a differnt department, being neurology so I don't even have a Dr name there or anything to contact )