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

First otter thing, very sad. Found out last night, the guy I know from the pub, who had a weird form of cancer affecting his neurones of his spine and perlipheral in legs etc; the one who had to have the leg amputated, was doing fine, post amputation, had even seen him in the pub, err, most nights actually - discovered a lump apparently (got this second hand from a muttual friend), and went to hospital for investigations, about to have three days intensive chemotherapy, and then no more treatment options, as its spread into spleen and liver ... Apparently his been writing a bucket list of things he wants to do, in whatever time he now might have left

Baby clothes;
Think I forgot to mention. W and I went to buy some, the other day.... We bought the most cutist little dress, with two pockets on it, and love hearts! - for Bee to wear. yes. I/we have dressed up Bee, my teddy I swear she gets cutter adn cuter each day

Hospital trips;
one tomorrow, oncology, I think this is the 'next' app, checkup type, brought forward, so they can investigate oedema at last), and see if its lymphodemia - I doubt it is, I don't think lymphodemia is pitting, and the oedema I have is, but maybe I've a mixture of stuff going on, which is of course possible...

Out of the blue, today, got an Email from an endocrine nurse (she may be my new growth Hormone nurse at the hospital, - I know her though; she is the nurse who turns me on; I.E., gives me my testosterone injections ) anyhow; my IGF-1 is 31.9 (range 16 - 39), so my GH injections at 0.2 remain the same, as I'm good in range with that dose; however, and I need to suggest this to them; I may be pooling GH (hence IGF-1) in my blood, as I must now be very low on T3 and T4, and so I guess the GH can't be fully utalised without the thyroid hormones.

Then, phonecall out of the blue; Endocrine consultant; two coices, well a choice of appointment day; took the earliest, of course, which is this Friday, 9 AM; they've 'discussed' my thyroid meds etc, so this is mainly about that; I will however, be mentioning I want the proper results of my bone density scan, plus I still don't ahve any results from the cardiac scan, so want both of them; plus maybe discuss my prednisolone dose, as I still think i could lower it, by 1 MG, to 3 MG AM, and 1 MG PM; afterall I know have basically every single symptom of hypercortisolism including a buffalo hump, weight gain, ostioporosis, 'moon face', etc., etc., and spots/achnie... etc. must mention the spots adn boils actually, they're getting really annoying.

Alsok wondering, given my really acute reaction to the last thyroid med, wondering if I need gastro involvement, to see if there is any perminant gastric/intestinal dammage, afterall I know the prednisolone can cause ulcers in the stomach, and small intestine perforation, asides anything else; I'm on the PPI antacid, but wonder if that is enough, and perhaps also oughta to be looking into if I've suddenly developed any intollerance/allergy to the other agents in meds, like celiac, glutin, lactose etc...

my arms hurt. wondering it may be carpal tunnel (SF of the GH, often) kinda like RSI hurt, like I've typed way too much, which I haven't mind, could just be the oedema oedema again I guess...

Still hoping we can get away Friday to Norwich, to revisit some of our fav places, like the cloisters and the pubs we know, plus the mushy pea stall on the market, and a friends' 40th BDay on the saturday; just trying to figure out transporting the GH pen and keeping it cold etc.... plus may do that in conjunction with the hospital visit on th e morning; as we can get bus back from hospital straight to the rail station.... - to do that need to work out timings for the GH and how long it will stay cold in the travel thinggy with the ice packs etc...plus might be a bit too much stress tying to pack final things, including meds, etc, just before dashing out at 7 AM to get to hospital in time for ( 9 AM, and thence straight off on train after bus back from hospital - I can't really do quick anymore or busy bustling type things, as my body just can't react and adapt to sudden change, due to the no hormone thing - I kinda need a cup of tea, at least, between everythign I do, no matter how small a thing hate being this damn weak.

Did towel laundry today, and i cleaned most of the bathroom myself - w just helped finish it off, though I did need a break half way through the cleaning the bathroom

Just had a long bath, and injected GH and took melatonin just after bathing.... - remembered to not heavily moisturise the area I wanted to inject this time slippery skin and needles don't mix well apparently (coconut body butter was the moisturiser tonight)

Oh and the Bodyshop box of goodies arrived this morning and w bought me home a new top he saw in the shop on his way back from the bank and shops earlier today, a new pink tee shirt, but with a 'V' neck on it, must try that on.

Can't decide between leopard print dress if I go away to the party at the weekend, or my new dark choc brown velvet dress...

Wow, so the GH is a hormone that is actually detectable in your blood Probably pooling indeed based on other things... Sounds like they do need to reduce the prednisolone to stop you having hypercortisol effects, then the GH could be reduced as well as your level is satisfactory and you're not taking thyroxin, and then you'd be going back to where you were before they started trying to make you 'normal'...

Bee sounds very lovely in her new outfit My teddy wears one of the outfits I wore when I was a baby, but when I see children's outfits in shops they are very cute, and made of lovely soft material.

Bee really is so very cute!

GH is very hard to measure in blood; its naturally produced by the pituitary, mainly overnight (this is in adults), and its levels are only vaguely high in the morning; a test of zero; can be prefectly normal, as its so low, if you miss it... its gone; but its very vital for the body; However, the GH itself, triggers (or is convereted too, I forget), Insulin like growth factor one, by the liver; this is more easily measurable; again though, you've got to measure at the right time, to actually diagnosis defeciency....

But my test last time, was in the morning, asnd the level I got was on the high end of normal, which is good; but may represent pooling due to thyroid hormone being low; however, without thyroid hormone, the body can't properly utalise the GH...

the actual test for GH defeciency, is a 'stimulation test', - basically, they inject you with somthing that will trigger GH and ILGF-1 release; if they then don't detech it being released, after the stimulation injection, they know you've got defeciency; that was the glucogon stimulation test... - my baseline IGF-1 was 11! - normal range is up from 16!- and my stimulation test results were basically zero

I'm not sur ehow much I can reduce the prednisolone; if they're still saying I've got addison's, then the dose I'm on is, basically the lowest.. any lower and its strictkly speaking below the level at which its even enough to suppress the adrenals...


Mind; I've done a week plus on only 4 MG prednisolone, and didn't really feel any worse; but I might have altered the dose wrong; that was 2 MG AM, and 2 PM; I think looking at stuff, 3 AM, and then 1 MG PM is more like accurate to serkadian secretions of cortisol, so more biological; taht I s what I may suggest to Dr, to try; 3 MG AM, (tollerable), and 1 MG PM (don't even notice it)


Saw oncologist today

He. touched me! - most Drs seem afraid to touch patients thesedays, which is seriously insane.

he felt my neck, shoulder lbades, abdomin, all over, groin, both sides, and both armpits; one slightly enlarged node in one armpit; but 'normal' size enlarged; I.E., its working like a lymph node.

no concernes of any sign of cancer return.

he entirely poo-pooed my GPs idea that I could have lymphoedima; as I've had no lymph nodes removed, its basically impossible; and anyhow, I've the wrong kind of oedema, pitting...

but.

he thinks I should be on a diuretic, and can't see any reason why not; but, in order o not pee off endocrine Drs, he's writing to them to say as much; and basically tell them; its their* problem, deal with it, stop pushing it on to my GP, or oncology.

Just over a week stince I stoped levothyroxin;

no painful bowel movements now.

brain fog improved.

energy ran high all day (went into town first thing, then to hospital, then back with a longer walk to visit a shop to buy tea), then short nap; then dinner, shower and pub.

feel... so much better... - all within a week of stopping levothyroxin; half life of levothyroxin is; one week. Quaret et demonstrandium.

gona pack bag tomorrow, plus double check with hotel about refridgeration for my meds, and ability to steal their freezer for 24 hours to refreeze my travel pack ice packs, and check trains and book hotel, etc, then firday is hospital 9 Am for endocrine, then off way for the weekend

ahh. done gone done some reading apparently, antibodies to T3 or T4, or excess 'Thyroid binding protein', can produce abnormal test results using standard immunoassay techniques, hence not revealing the actual amount of free T3/T4 in blood, more acurate results can be obtained using the equilibrium dialysis technique. test OK... so the hospital is gona play dumb... I've just gotta try get up to speed on lab testing teachniques as well as endocrinology itself - wonder if sotmhing simular can happen with the cortisol testing...

Interesting reading indeed...

Have you had your saliva tested for cortisol?

no way!; the UK don't like doin g saliva or urine cortisol testing; anhow; I can't have my cortisol tested anymore; as I've been on replacement steroids, first Hydrocortisone and now prednisolone, for basically two years; the exoginous applied hormone, feeds back, and prevents the endoginous from being released; so pred, or HC t taken by tablet, or IV, etc, stops the pituitary from secreting ACTH, and thence stops the adrenal glands secreting cortisol; after such a long term steroid use, I might not even be able to recover function of either gland, even if it once had the ability to do so; simularly, my 12 weekly testosteorne injections, will suppress LH and FSH secretion by the pituitary, and thence prevent my balls secreting testosterone, even if they were capible of such; the levothyroxin again, stops the pituitary secreting TSH, and also stops the thyroid secreting its hormones - but sometimes suppression can be partial not complete, and sometimes it can restore normal function, if target hormone from outside sources is stopped; assuming the glands themselves haven't entirely died in the meantime (or were not entirely dead to start with)

I'm not so sure why they'[re so reluctant for saliva testing in the UK: it at least allowed, before starting steroids, to get a real* 24 hour profile; my 9 AM cortisol might be rubbish, but 4 AM or midnight might be great, if say my 24 hour clock was upside down. err. which it is , of course.

printed out another sheet to take to Dr to give her, so I don't forget stuff bed soon, not long back from pub

I felt. so normal this afternoon, it was weird. like my brain hit a few hours when it worked fully well, and I didn't feel like I had no body or mind.

Ah, that's interesting about the UK. It would be good indeed, to get readings throughout 24 hours to see what your cycle is.

I read something somewhere (on my old computer, so it isn't in my internet history any more) that you can be tested even after having taken steroids (eg if steroids were administered during a suspected Addison crisis) but you have to be transferred to some specific steroid for x time first and then it's all OK...

I tried searching last night, but only came up with the saliva test thing... I'll try searching again later and see if I can find it for you.

They should be able to test your cortisol levels even on steroids, though, because if you are being given an overdose then your levels would be too high even if your natural system isn't producing any... Or is that another problem, that the cortisol isn't showing up in your blood like the thyroxin didn't?

Glad you had a good afternoon, anyway

well; my cortisol measured very low, on the test that got me diagnosed, then, subsequently I had a short stimulation test; basically they measure your baseline cortisole, and ACTH, after you've not taken steroid overnight, and that morning, (have to do this test early morning), then they inject you with a synthetic ACTH; which will stimulate the adrenal glands to release cortisole; I did produce cortisole, but the rise was very slow, (from memory I went from <25 to only 68 over the test). - anyhow, the problem isn't my adrneal glands, but the pitutiary not producing the ACTH in the first place,

its difficult o measure cortisole once your on replacement; easier though if your on HC; HC is basically cortisole; however, as I'm not on that, but on prednisolone, you can't measure anything in blood, as it doesn't get converted to cortisole;

I think your thinking of dexamethazone (sp?); another steroid, which is used for that test, when you come off the steroids, go on to the dex (the longest acting of the steroids I could be on), and then get re-tested.

I'm not sure if they'll ever agree to try remeasure etc, as the DX is already made, but its a possibility.

outcome of todays consultant app; I'm lowering my prednisolone dose; 2 MG AM, as normal, but dropping one MG off the evening dose, to just 1 MG so, only 4 MG a day, which is roughtly equivelent to 16 MG of Hydrocortisone.

for now, I'm just not going to take the thyroid meds, and they're going to measure my thyroid levels (as they did today), and see what my levels do; then if we want after a period, they've agreed to try the T3 only med, if we tink its needed.

Ah, yes - that's the one I was thinking of, a test with dexamethazone.

Yeah, they've made the DX and of course it couldn't be wrong, so there's no point in retesting, nooo

That sounds a positive appointment today, reducing the steroid dose and seeing how you get on I am very hopeful that you'll have more good afternoons from that

One big advantage, if I can 'survive' and feel OK on just the 4 MG dose a day, that is pretty much at physiological levels, and so 1 MG down from that, oughta be low enough to not even suppress the natural production (if I'm able), of cortisol; which would make a retest of natural production a hell of a lot easier, which is a bit of my thinking at least, to maybe in a few months cut it by 1 MG more, to just 3 MG a day and either get the hospital or pay private for a cortisol 24 hour saliva test (I think you can get them postal from reputable providers) just to see what is happening - as the prednisolone doesn't make any cortisol in the blood, any that the test would find, would be my own bodies production (as far as I know)

hmm. well, just took my first 1 MG evening dose... and came over feeling very odd just a bit after.... hopefully that isn't a sign of insufficiency, shall see how I go on it and incrase back again if it is just too low for my bodies needs

Right dinner eaten, must think about showering and then finish final packing for tomorrow - I've felt trapped prisoner in this city now for over a year, since I last left it, so really rather looking forward to the trip by train and two nights away somewhere just 'differnt'