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

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21 being 21 Lb. the weight I've lost now... in... err... about 10 or 12 weeks? not quite three months so maybe 10 or 11 weeks I guess - all my XXl tee shirts suddenly fit, meaning I've suddenly got a million more tee shirts I can wear and ditto, I seem to have a lot of full length dresses that fit again comfortably

not sure if its just the weight loss, or its the exercise, or a combination of the both, plus having spent more time now on the lower dose of steroids, but the oedema is reduced hugely, which is good, and my ankles look... well, rather like ankles again - I keep getting out my silver chainmail anklet (with the silver bells on it), but alas, that is a good inch or so too tight to wear still - I was wearing it near the beginning of 2015, in towards the middle of the year before it just stopped fitting

Was out Saturday night for a Greek meal; we had a starter, as a main dish, with rice, and a salad that was luckily not too smothered in olive oil - so worked out good for calories no starter before the meal, and no dessert after - then the pub after I only had two pints which was good too it was a meal with the local LGBT group, unfortunately by the end of the evening, after the meal, in the pub, W and I got left with the one remaining person.... A very drunk, gay 70 year old Irish man.... who then sort of looked like he was following us home after - luckily we managed to shake him off

Sunday was monthly coffee, at 1 PM, with the LGBT group, and I got me landed with the radical, femanist, militant, lesbian girl.... - I got such an ear bashing about everything and anything, politics in France, the US, UK emigration and all kinds of things, that I felt really ill after... - that kind of thing can just whipe out my bodies steroid/cortisol reserve...

Today, after a really decent night's sleep, I've felt aweful... so full of fatigue, the fatigue type fatigue, not to be confused with feeling tired, and just so exausted, and 'out of it', very distant, light headed, disconnected....

Got up for breakfast, took drugs... then went back to bed... dozed, for a few hours, then got up, had lunch, then went back to bed, and slept until just before 7 PM, when I got up, cooked dinner, which we've just eaten, and took more steroids, and other tablets and stuff Must shower next....

no gym tomorrow, as W is at hospital for a 6 monthly checkup, - I must start organising notes and get something written to take with me to my endo app on Friday, trying to not word it too viscous..... but just to try say 'hey why not do some thinking about my 'case', and think ahead, and do regular testing/monitoring, rather than random stuff when it happens to occur to you'. and, also 'you know you diagnosied me with penitious anemia two years ago?; any chance you might want to remember that and actually treat it, before I lose more sensory ability/experience of the world, due to further ongoing nerve death in my body'. - also want to make them try do a complete review of my case, and reassess all my hormones, seeing as how most of the results don't make any sense; after now stopping the thyroid meds, ahving so much more energy, and looking at my last results, I see... my TSH level is just* in normal range.... - also need to see if they've any plans on treating my ostioporosis caused by the steroids, or not...
Not a lot planned for tomorrow, as there is no gym, so might try get out for an hour or two's walking instead, tand then I've got the gym/circuit training on Wednesday and I think I might be missing the gym again Friday, due to endo app... - so will probably try walk to hospital that day, and back, which is nearly two hours walking

Stil not felt kinda right today, energy wise, though felt fine first thing.. actually did a bunch oc cleaning etc, early on, before breakfast.... then made breakfast, took steroids... and... felt ill then sort of felt off most of the day since then... napped in afternoon, late on... too few calories for the day, so after dinner, and after showering, went to pub... just got bacck... oughta have got up to near 1500 KCal for the day now which oughta go nearer 1700 by the time I've had some supper still trying to figure out what the I'm ment to say to Dr on Friday, at the clinic app... think Penitious anemia will be one main point, given they've failed to treat that, since diagnosiing it, more than two years ago now... then to talk about testosterone, which now seems to work opposite to what it should, as of the day I get the injection, making my 'lvelels' seem lower, until the half way point to the nest injection is passed then... a third point... I guess mention the success of the growth hormone, and then the success of not taking any meds for my hypothyroid. and . . . nudge them in the point of all that adding up to ... your DX doesn't equals patient response to meds, or observable patient reaction to meds... oh, and get them to look at my spots/toils or whatever they are on my and my spine I assume they're caused by one of the meds, or a lack in something never really had spots before, and not that sort of sport

had a weird one this morning... as W wa sout I did my own breakfast and was alone beore hand, so pottered... did some cleaning etc, and had put some on.... - as soon as I tok the steroids.... I coudln't hear right... spatial awareness just vanished, and the music just didn't sound right... kinda explains why I'm mostly deaf now, whenever there is any background noise at al..... I just can't place the noise in 'space'.... noticed it the evenign, in the pub, which was quiet, but when there was noise from in front of me, it was just* 'in front of me', no distance to any of it, etc.... just a single poimt of noise, even though I new because I'd walked the distance over, to where we sat, that some o the noise was from a long way off, and some closer... I can't distingue.... distingusih... distinguish.... steorids are still evil... evil steroids.... may also enquire of Dr if I can lower steorid dose, if nothing else; as new evience out, points to the convertion betweewn pred and HC being differnt to what it was.... - was 4 MG HC to 1 MG pred, now they're saying about 6.something HC to 1 MG pred... so my 4 MG a day is more like 24 plus MG HC a day, rather than 20 MG a day.... so maybe reduce to 3 MG a day... perhaps 2 MG AM and 1 MG PM (rather than 3 MG AM and 1 MG PM) (was origionally on 4 MG am and 2 MG PM, as professor mis calculated his four X tables... and put me on the wrong dose for a year) or... perhaps I should just ask for a second opinion, at a differnt hospital, that maybe has Drs who can do science stuff, like medacine...

circuit training tomorrow late afternoon, and new delivery of Growth Hormone in morning/AM, so another massive box of polystyrine and cardboard and weird refridgeration freezer/frozen bags of gunk to try dispose of in the household dustbin... I'm sure most of it oughta not be ina domestic bin... they can't apparently dispose of it for us

That is good news about the TSH

It would be an interesting experiment, given that people with low cortisol are desperate for the steroids when they wake up after 8 hours' sleep but you aren't desperate when you wake up, you could wait and see if you get desperate at some other point in the day, and take your 'morning' dose then...

Let's hope the doctor listens to you and has some fresh ideas about it all after you explain your experience again

I'm just always looking to try think of a frsh, or new way to explain it to the Drs, just in case there's something in the way I tell them, that means it doesn't get through to them, or makes them less likely to help or explore a little bit outside the box of 'this patient has this diagnosis, therefore they are X, Y, Z....' - I might write a sheet of A4 again tomorrow, with a heading for each of the hormone replacements, I'm on/have been on, with a couple of bullet points under each, plus add in the diuretic I was on (that made me pee less ) plus add in the levothyroxin again, which I'm not now taking, and add in the odd now rising up TsH level...

One major concern though, is their random approch to monitoring; I had the bloods done a few weeks back for the calcium and parathyroid hormone; yet, whilst the've got a needle in me, I'd have thought they'd measure TSH T4 and T3; in order to build up a complete picture of what my levels are now, as I'm not on any medicaiton... yet they didn't.... - simularly they said they were goign to measure more often my testosteorne, as I seem to get fluctuatings in my testosterone levels, that don't quite add up to when I get the injections (and sort of seem to me at least to point to my body making some of its own, which oughta be impossible...) - A bit like their not doing an initial bone density scan, I jut don't think they've got a decent admin in place, and the system, I.E., their computers, don't seem to automatically flag up what tests should be done, or could be done, in conjunction with other blood tests, whilst they've already got a needle in me - problem with measuring any hormone, the level can alter wildly during the day, and so any given blood test is just what it happens to be, that precise second they take the bood; level could have been normal earlier in the day, normal later in the day, or elivated/low at differnt time, etc... - plus with my not really having any 24 hour serkadian clock, (hence I'm on melatonin), I doubt my 8 AM cortisol reading for example, or 'morning testosterone' reading, is 8 AM, or morning; as my body hasn't a clue what the time is, and so I'd imagine my hormones don't folow the useual serkadian patturn of daily secretion (cortisol and testosteorne are useually highest first thing in mroning) - the TSH is only* just into the normal range, still low, and the free T4 and T3 levels were both well below range, with a noticbly lower T4 level than I had before I started levothyroxin (back when my TSH was lower by half), but, simularly, I can spot from it that I convert well; as most of the free thyroxin was converted to the free T3 (the active form of the hormone) - Just not sure how they can actually retest diagnosis now I'm on medcation without stopping all medication, which probably isn't likely to be a good idea, but, maybe they can interigrate some hormones seperately.... - agan, annoyingly, as they didn't measure my thyroid levels again with that recent blood test, there won't be much new in results to look at; just the one set of readings of the thyroid pannel, since I stopped taking thyroxin back.... in January? - though I will hopefully find out the results of the calcium and pth; just hoping my parathyroid hormone isn't messed up now too

I must also talk to them about blood test results. they dont' post them too me... they don't seem to like doing that; unless they're in a letter CC-ed to my GP, and they refuse to E-Mail results to me (security of information etc., etc.,), I don't wanna get heavy with them, but actually they have an obligation to provide results in an accessible format now (Disability discrimination act was extended to cover thing slike NHS recently); so I really think they might wanna consider theire not emailing stuff out, as that would be a totally inexpensive, yet accessible way I could access my results and really, do I care who knows my TsH is 0.49 or I did once have a testosterone level measured at 0 nah, I can't see why anyone would be particularly interested in that information either cept me the patient

Must find out if they've decided to treat the ostioporosis or not; then try decide if I want the treatment.... as far as I can make out, the main treatment can* have the side effect of causing your jaw bone to disintigrate, and increasess the risk of fractures of the femur which seems a weird set of side effects to me, so for once I'd like them to treat me like someone who is a patient with an interest in their treatment, and demand to know the side effects and riscks of treatment before Its started this time

I think the problem is with the steroids, I'd just feel fine, indefinately not taking them; right up to the point I went downhill, very quickly, into a coma, cardiovascular failure and death... which I think is the protocol to follow under circumstances of cortisol defeciency when the body is provided suitable stress, like infection, illness or injury - still would like the dose lowered if possible, as asides anything it would slow down my bones disolving away



wow! - been feeling rotten for several days... found out why; no gym, no exercise.

went to circuit training, and really pushed myself at it (and did some things I couldn't have done a month back), utterly exausted myself; and feel awake for the first time in days - just need to muster energy to shower or bath now, as we had dinner a while back, I really should go wash I think a bath... epsum salts.... lavender oil or maybe rose oil, and a Lush bath bomb too

Oh.

and, another thing I noticed today.

During circuit training, there was unsueally some running, as well as the useual jumping jacks etc, squats, etc., etc.,

OK, I don't normally run... as in... OK I never run.

however, I have run in the past.

ahh.

so, that is why things called 'sports bras' exist. - I think I can definately say that due to something in my hormones I'm recieving, is still making my .... chest grow err. I'm all for novel experiences, but taht was definately a new one for me.... - 'They' bounce I bes t go find me a sports bra then. I guess my lacey nice ones arn't really suitable for doing gym in - another thing to point out to the Dr; I did kinda figure the testosteorne injections would stop the feminsation effects of producin gno testosteorne myself - yet again, I've never seen a single measurement of oestrodyle/oestorgen on my blood results, which they really should hav e done...