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

My is gona be so with me like I care, anymore.

Had hospital apps on Monday, and the first one was megga early, meaning we had to get hte bus early, so I didn't take my levothyroxin (thyroid med) that morning. just the prednisolone steroids.

Oh. on 3 hours sleep, to the hospital, felt... fine... had cardiac scan... felt fine.... did bloods in endocrinology, met the endocrine/Growth hormone nurse at home, after we got back, so she could check we could reload a new GH pen ourselves, which we could, and she cheked I was injecting correct, etc

showered in evening, and was drying myself.

OK, one day, no levothyroxin, the sensations/feeling in my lower legs had returned. no painful bowel movements, and energy and clear thinking all day.

I'm not touching those drugs again.

Tuesday night went ten pin bowling. <wow. - no fatigue at all. bowels still not 100% improved after stopping the levo, but hell of a lot better, now. and energy higher, concentration up, thinking clearer, and can 'sense' the world better around me, and have as I said sensations back in my lower legs, which makes walking a bit easier if noting else.

New velvet skirt arrived side split, full length, black velvet perfect fit

what else... went to Yours clothing yesterday, got some new leggings as they were on offer

went out this morning, to shop with W, just for grocerys....

App Friday is the important one, with the endocrine consultant. she'll be upset I've stopped a medication, but hopefully happy that the GH is going well, and baffled when I tell her how weird my reaction to the testosterone has been recently; they clearly must need to do more blood tests on me for the testosterone, if nothing else...

hopefully will get bone density scan and cardiac scan results on Friday too.

Had a short nap this afternoon, but woke quite early, so I started cooking dinner just a simple mushroom risotto, which oughta be almost done. as I'm seemingly with more energy now I've stopped the levothyroxin, I think I oughta look at joining the gym soon, there is one near here, where its not too expensive, and I should get a personal trainer, plus they get some NHS referals to there, for stroke etc, so they should be non-plussed by having a blind customer... might be a bit confused by a blind transvestite customer, but that's their problem to deal with...

Oh, and have an invite to a friend's birthday bash, who's just about to turn 40, which is odd, as we were at school in teh same year, and my birthday, just gone, I only turned 17 again could be fun, might be some other long forgotten school mates there, so I will have to make extra effort to myself; this will be a nice trip; I've not been well enough to leave the city since Noveember 2015, when I went to my Dads, and Dec 2015 - jan 2016, when I went to Sweden its borning being stuck in the same place, so getting away with W will be good; shall have to arrange some supply of ice whilst away to keep GH pen cold, we've a cold travel bag thing for it, but I think that only keeps it cold for 48 hours, so I think If I can geet some of the same sized ice pack things, I can get the hotel to freeze them, and then swap them over with the ones I'll have cold, frozen and put in the bag to travel with it with right... must go serve dinner

Glad to hear dropping the levothyroxin is having such a seemingly positive effect.

If nothing else, this just reinforces the conclusion that your doctors are not paying enough attention to your actual symptoms and reactions to medication.

Just be sure to self monitor and note anything out of the ordinary no matter how seemingly insignificant.

Out of the ordinary.... - like regaining the abilit to feel things in my legs from the knees down!

yes. they are just semeingly so useless, I mean... the number of times, a consultant, or even the top top bloke, the professor, says things like "your reactions to th emedications are just wrong, 2legs, the medication isn't ment to do X, Y, Z, but it seems to in you..." - then, they... do nothing... - confusing as this is a university hospital, I'd have thought the prof in particular would have a vested interest in investigating and researching my odd reactions to the meds, not least so he can get published papers out of it

Just about to write a document to print out, to remind us during the visit tomorrow, all the bits I want to mention, just headings really, as I can recall the details, so long as I don't forget the actual main bits I want to talk about... plus things like wanting the most recent blood results, bone density scan, and heart scan results etc, and to find out what they will do next to address my water retention/oedema

The long term consequences of teh hypo state for the thyroid are very bad, as in it can kill me, but to be honest, I don't care anymore; if that is several years away I'd prefer living several years alive, rather than living longer, all the time as a member of the walking dead, which I am when on the levothyroxin.... B Big pharma is running amuck with healthcare though, the drugs/medications get expensive more and more, yet longer out of their development stage, and the UK NhS in particular has set up their precurment of medicaiton in such a way, to maximise profet for the big pharma companys, and minimise savings for the country, which is so the wrong way round, so I'm not even sure any other medications for the thyroid are availible in the UK; I may end up having to illegally import alternative meds myself from overseas.... or if that looks too tricky, go on 'drug holidays', and just get soem of the alternative meds, over the ocunter,a nd brin them back, or rather, smuggle them back to the UK in order I've medication to enable me to stay alive...

this is the make or brak for the hospital here tomorrow; I'll be filing an official complaint and seeing a solicitor for private prosicution by next week, if they don't react sensibly to my requests, - they oughta know this, as the last letter I wrote to the hospital, said as much. - I feel so much stronger with out the levothyroxin slowly rotting my brain and body so.... daggers will be drawn

perhaps I should power dress.... - leopard print or velvet, not sure... - I think I'll wear my over-knee length black riding boots definately - maybe I oughta turn up weraing my radiation death mask Right, must go write up these notes I want to t take with me

My mask disintegrated after several years hanging on my wall.

I recmember you saying! I've still got mine hanging upstiars, on the landing.... its wearing a tiara and a feather boa, plus all the ribbons I had in my hair, during chemo and radiotherapy, are attached to it! it does achieve the desired result, and occasionally frightens the hell out of people when thy go upstairs to use the loo I sometimes put on the mask, to meditate whilst wearing it, as it always makes me so tired when I put it on.... (I fell asleep in the radiation room every time they attached me to the bench with the mask ) - I really must try buy one of those hard metal benchs they use to radiate us on, they're so comfy

You could be on to something there! I usually fall asleep during scans and xraying and whathaveyou.

Not until I have warmed up the steel with my body heat, though

ahh, I'm OK there, I don't have to wait to warm up the steel with my body heat; my body is as cold as steel.... (hypothyroid symptoms!) - one reason is on a scanner etc, you have* to be so still, and you concentrate on being so still, you switch off, and drop off

Yep, exactly

I've been told... that as we've got to get the bus early, to ensure we get through the busy traffic, to get to hospital on time, we've got to be in bed early... and we can't go to the pub well I'll probably wait until 1 AM to go to bed, or I'll never sleep, up about 7 I think in order to take steroids and et and stuff before going to get the bus, and to decide what to wear of course... probably not a dress, they're a little annoying if the Dr suddenly decides I need to be examined, or have electrodes or needles put into bits of my body so I think the new velvet black long dress, black riding boots, and a blouse of some sort... maybe purple or black Mmm... could do all black, and wear my long black leather coat.... actually if I do that, I oughta move the stuff from the brown leather handbag, tonight, into the black leather handbag which is bigger, so I could take the headphones and IPod with me too in case there is any waiting to be done at the hospital Printed out the list of hormones I'm on, earlier, with comments on each, sideeffects, good points etc, plus the long lon glist of most of the obvious side efects I have its a depressingly long list

had a nice long bath tonight and shave my legs as I'd not gotten round to do that in ages more stupid spots (think that is the steroids that cause them)

Oh, dressing for medical appointments. Elasticated waist trousers, in case I need to take them off; sleeveless top for easy BP, cannulation etc; loose cardy for variable warmth; clean matching undies because I never know who might be seeing them.

Your outfit sounds way more swish!

Mol

I've a selection of 'hospital 'tops', all of which have easy acess to my arms, for bloods today I wore the black sleeveless blouse which was just as well, as I had BP done, bloods taken, and it is loose enough so the Dr could easily lift it up to listen to my heart...

App went sort of well. goign to try a differnt brand of levothyroxin, which is the last brand left in th e UK for me to try.
She's b booked another app to check my testosterone levels at the mid point so we can plot that with the other mid point from last time, plus the injection day readings (just befgore I get the testosteorne injection they take blood to see what it is).

She looked at my oedeama... and didn't suggest anything can be done.

she confirmed the weird lump at the back of my head is a buffalo hump (steroids cause that but useually only if our over dosed on them) she ignored the spots I mentioned to her, didn't comment on my heat intollerance/sweating, she was happy about the GH injections, but uhappy I'd stopped the levo.

Bsically, even if the levothyroxin makes me so ill I can't move, or wake up, I have to take it yeh. right.

Oh, and the bone density scan shows I now have ostioporosis from the steroids.
But didn't show how bad I have it, as they've not analised it fully. no idea why they haven't, no idea if they'll bother, anyhow, they're going to do nothing about the ostioporosis.

The cardiac scan of my heart isn't back, no idea why, no clue as to when it would be, especially as teh technition who did it send she'd have written it up and send it to them, the same day

Dr got me to have a vitamine D blood test, that was it really.

She did hint she might want to raise my levo dose, as my levels show I'm low; as they have done now for all the time I've been on it, but the other Drs either don't realise its low, or haven't read up the NHS guidelines, or just want me to be ill.

She was trying to say I might lower my steroid dose.
but.

I corrected her maths, and pointed out I was already on 20 MG HC equavelent - 1 MG pred = 4 MG HC. a conversion I do automatically in my head between HC and pred, which the endocrine consultant couldn't do.

another day closer to death, but still alive. I guess.

Every time you describe this stuff - eg heat intolerance, palpitations, trembling, which are on the list for hyperthyroid not hypo, and the hump for cortisol overdose - still makes me think that your blood is somehow empty even though your body is not empty of hormones... I have no clue how the doctors would find that out, but clearly the blood tests aren't giving them the whole picture...

Do you ever discuss the effects of alcohol on your medication? There must be some drugs which would be less effective?

I don't think you need special ice packs to keep the pen cold when you travel. Just get some ordinary bottles of water and freeze them overnight, they stay frozen for a very long time and would fit in a cold bag easily, and you can either refreeze or drink the water afterwards.

Drs have never mentioned alcohol affecting meds. I do know a lot of people on steroids, or with PHP report feeling very ill on drinking alcohol, I feel fine on drinking it, I do only drink moderate strength beer, remember....

Re the cold bag thing; its a special cold bag, despgined to hold the zip-p bag that the injection pen lives in, so only has the room for the two of the ice pack bag things, it comes with, if filled with them, I think it is ment to stay cold for 48 hours, keeping the pen at between 2 and 8 degress C, above that the gh is killed ; so just woul dbe nice having the same freezer bag things in it, that fit, and the same make, that will promise the same level of consistant temp; the bag also has some padding inside, to keep the pen, in its case, away from the ice; too cold will wreck the GH too I think.... - failing all else, I can probably waggle about injection times, and not bother taking it, but that is cheating a bit - and having not left basically the house now for over a year, would be nice to have two nights in the hotel though I'll have to just put up with not sleeping at all for two nights hotels don't seem to have opening windows now, and unless I am freezing cold, I feel boiling hot at night... mind, enough alcochol normally makes me sleep