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

Hopefully none at all. Adrenal crisis that is

Woke in the middle of the night... OK, well about 4.30 AM, after having gone up to bed circa 1 AM.
Feeling sick..... and very very hot, and sweating buckets, and heart palpatations/weird vibration sensations
Didn't vomit then slept in really really late.... took levothyroxin, ten, half an hour later, took 5 MG pred (eq 20 MG HC ), and ate some food, to go witht eh steroids.... and waited... and timed.... twenty minutes... thirty minutes safe (it'd absorbed into blood by then so it'd not have been the end of the world had I then thrown up)

Temp at 38.4, or 38.3 which is very high for me

no feeling of nausea now though which is good, just so hot but that could be a combiantion of the weather, running a temp, and still having testosterone hot flushes

Phoned the endo nurses to make sure I was being a good boy and doing the right things (they get ever so mythed if I do wrong stuff), told them what I wqas doing, and they agreed, keep doubling the steroid whilst I'm running a temp, lots of fluids, and W straight in with the IM injection of HC if I vomit, and up on th e 9's and straight in to A&E but... hopefully won't need to go that far just so tired now... may go back to bed I think Hope I'm feeling well enough later, as we've been roped into a quizzz team at teh local pub... so hoping I'm feeling betterer by then, shall take my temp again later and see If my temp is down tomorrow, I can reduce the steroid (no way am I doing what the nurse said though... reducing it straight back to normal, they oughta know you have to taper down the dose of steroids slowly to avoid a crisis in the other direction, as it were... ) Oh, and I have to ring in tomorrow, and speak to the other endocrine nurse (the one who turns me on, AKA gives me my testosterone IM injections ) no idea what these heart palptatations weird vibrations are though

Yikes!

Hope you do recover quickly and things level out.



Last night I was again having trouble getting to sleep due to an irregular heartbeat. About 15 or more years ago, once I finally had some form of medical insurance, I went to check on an annoying stuttering of my heart beat. That doctor diagnosed it as premature ventricular contractions. These are very common and "mostly harmless". Even before I got confirmation of this, I figured out their source and eliminated caffeine from my diet and they went away.

But for the last few weeks, they seem to have returned with a vengeance. Last night, while I was tossing and turning (and pissing of the ) a thought occurred that this may have something to do with me recently changing my testosterone replacement. I was using an expensive name-brand pump-dispensed topical ointment (at 1.62% concentration) and because my insurance balked at the price, I've been switched to some 1% sachets.

This morning I skipped my dosage to see if the PVCs (or an unrelated irregular heartbeat) goes away tonight.

I'm changing endocrinologists and the soonest appointment I could get with the new one isn't until sometime in November. If the testosterone is behind this irregular heartbeat/PVCs maybe I can get that appointment bumped up.

If I had your symptoms, I'd have to go to an emergency room probably and even then I don't know what they'd do other than charge me an arm and a leg.

ahh... that is the big advantage of it here, being free... I phoned up the endocrine specialist nurse earlier, to check what I was doing (doubling steorids, increasing liquid intake etc), just to check I was on the right track, and she confirmed, and added advice to do if things worsen, etc, and said I should phone her again tomorrow.... - if I start vomitting then its basically phone an ambulence and straight into the emergency admissions bay at the hospital (its like A&E, or ER, but more organised as they['ll have phoned ahead and be arrannging stuff before I arrive).

Then, its 6 litres of sugar/salt water, for rehydrations and to stop a heart attack from the blood pressure changes when I go into adrenal crisis, and probably another IM injection of cortisole/hydrocortisone, and then IV hydrocortisone along with the fluid, plus bloods taken to culture up any infective agents, a X-ray 'thing' bought to the bed, and X-ray to exclude lung infection... etc., etc., its just odd how run of the mill I'd consider that kinda thing now

I'd not considered the testosterone... my last IM injection wasn't that long ago, so maybe some of the heart palpitations are that; but I'm not sure they are heart palpitations; two other optiopns;

low thyroid can cause patients to experience weird vibration sensations inside their body, whilst, being hyper thyroid can cause heart palpatations proper...
Also, the sensory and sensory prerception changes caused by both the panhypopituitarism and the steorids, can lead to odd basically halucinations including auditary vibrational etc... - I got horrible hallucinations on the hydrocortisone before I switched to the prednisolone - the steroids basically over time cause brain dammage... which is nice.

hurrah! my temp has come down... now within 'normal range' which is just very slightly on the high side for me but... better than 28.4

still going to double the dose for the rest of today (final steroid in a moment), and tomorrow morning too then I'll speak to the nurses again, and of course see how I am, and how my temp is then pah... this being a dr thing is easy

I so wish teh Drs and nurses would do something about my testosterone. last IM injection was only a week ago Monday gone. and I've got hot flushes worse than ever. I've just showered, and the gown I'm in is soaked through with sweat. my hair is dripping sweat off it onto the desk. another night with no sleep then. hurrah.

Have to say, your journal puts my medical adventures into perspective - they're very tame in comparison! I'm not sure whether to eat or sleep tonight but at least I have a choice

Mol

rubbish! its not a battle for who can have the most malase over a single lifetime... I think I'd win anyhow

Was so hungry.... but coudln't decide what to eat... then eventually did... so at least I've eaten now not sure if I'll bother trying to sleep tonight or not, at least the air temp has cooled a bit, and my temp, measured with the thermometer, is lower again still, under 37 now, so heading towards my 'normal', which is always seemingly on the low side (itself a symtpm of low thyroid function I think....) sort of feeling a bit better now... problem is with all this mix of hormones I don't have, and those that I sort of do have, and those that I've got artifical versions of at random amounts... it does make me even more up and down emotionally than useual I think... though, generally, emotionally I just feel nothing anymore. actually physically I feel very little too, as I just don't percieve sensory stimuli properly anymore most of the time, like the last intramuscular testosterone injection, I never felt it at all which I guess is kinda good as I oughta be starting my daily growth hormone replacement injections soon the thing for self injecting is kinda cool actually... quite neat Have an oncology checkup soon too... no idea what I'm ment to say to them, I've got so many symptoms of the cancer having returned, that they monitor, but, in each case I think like with the sweating, its probably more likely to be the hormones I never really give the cancer much thought now, though I do know the likelyhood is it'll pop back at some point, and likely end up being my route of the plannet, if I don't get done by a major adrenal crisis first although.... that does rather look or seem a lot like I'm ruling out entirely the prospect of developing other, new, exciting ailment...... I'm sure there are still a few departments left at the hospital that haven't put needles or scapules in me yet I just miss my old life, and the old me but doesn't seem to be a great deal I can do now

and lo.... it gets to almost 1 AM... and I'm awake for the first time all day yet tired at the same time hormones are odd things.... one is pulling me to alertness, even as my body is trying to indicate its tired from having been up a long while after not much and very disturbed sleep last night, not to mention being ill today running a temp and almost going fully into adrenal criss again ust hope I might sleep tonight...

I slept for like nearly 6 hours!!!!!!! I've not slept that long in a night since.... err... no. I can't recall the last time I slept that long

rose, cleaned meself, downstairs, cold water running, filled kettle, as per.... took levo and then drank coffee and lounged for the half an hour or so before food that the levo needs, then I could eat, so I could take teh steroids took 5 MG prednisolone again (tapering down from the high dose yesterday as the nurses didn't tell me to do) how... odd... 4 MG pred, I'm barely functional, 3 MG pred, I feel less unwell, 5 MG... I feel even less unwell on taking it how... utterly weird maybe I shoudl stick with 5 MG.... actually, the prof mis-prescripted my prednisolone anyhow, and just a single dose of 5 MG in morning (with additional 2, or 2.5 MG in evening/late afternoon), is the more useual dosing regeime so yesterday I took two X 5 MG pred, (20 HC equivelent), and today I've stgaarted with the 5 M'G pred (10 MG HC eq) I think I'll dose 2 or 3 MG pred, later tonight, and then tomorrow reduce the evening/afternoon dose again, by 1 or 2 MG, and keep with the 5 MG morning dose (20 MG HC equivelent actually on 5 MG pred) which oughta be about right....

Still no idea what the endo thinks they're doing on my thyroxin dosing and levels.... Its like they've not got any actual plan on what it should be, or what they're aiming for... on my last results, my TSH was whiped out (as one would expect when taking exoginous replacement), and my Free T4 was virtually idential to what it was, when I was hypo....l but, the free t3, is well within normal range, so perhaps I'm just good at converting from FT4 to FT3, so the low FT4 measurement that got me diagnosed with hypo probably wasn't very useful... mind, I was low on TSH which is the main diagnostic criteria for hypothyroidism... I'm ment to be in the top half of normal range, for FT4, though, as I'm panhypo, not just hypothyroid, and my FT4 is right at the bottom of normal

I have no temperature regulation left now its melting out popped to Waitrose for a few things, with W this morning, but it was already scortching out, felt so fainty in the heat May try phone endo nurses early afternoon

My heart is with you.

I don't know what to suggest.

Does remind me a little of what happened the last two times I ended up in the hospital with diabetic trouble beginning with hypoglycemic episodes, the most notable immediate problem at the time for me, though, was thyroid storm, part of a systemic reaction to the type II diabetes crisis, something I'm sure your endocrinologist must be monitoring.

Diabetes melitus is a side effect of long term, chronic administration of the steroids I'm on. - no, they've never once measured my blood sugar or done an insulin resistance style test on me = I have, of course told them repeatidly for over a year, during the time on hydrocortisone, how the dosing each day, at time of dose felt to me like I was drifting into a hypoglycemic coma (I'd take teh mroning larger dose, and just sit on the sofa immobile, unable to move, barely able to talk, but they seemed to think this was fine, and didn't really believe me anyhow, despite seeing this themselves on the occasions I had to take a large 10 MG dose whilst in the endocrine clinic)

I'm mystified at their ignorance and ineffecient methods, and just their general lack of understanding over this condition - was talking to the nurse yesterday, the specialist endocrine nurse, and I knew the normal range for the T3/T4 etc, before she remembered it. = and I know I'm on about 10% brain capicity ATM, thanks to the psycological and neurological affects of teh medication and affects driectly of the hormone defeciency.

but. the most perplexing thing, as happened this morning, as it happens every day;

I wake up. feel fine.

get out of bed, come down, make tea, etc., etc., brain working fine, body feels fine. - then I start taking the meds and feel worse and worse. - I've told them this and they've still no explination but seem to find such information of no diagnostic use, and instead just point at my blood work results sadly I think its too late now to undo any effects of the long term steroid use, and testosterone replacements etc, so I assume I'm just stuck with them, but my money is still on there having been some endocrine effect of the chemo, which, is not uncommon and which is normally reversible... but as it wasn't picked up at the time, now the replacement long term, has further reduced the ability of the endocrine glands to recover due to their now dependancy on exoginous hormones - of course it didn't help that when endocrinology wrote to oncology, oncology denied the chemo drugs could affect endocrine function; which is a lie, as I've read all the peer reviewed pappers taht that say otherwise so each day is just another day getting up in order to take drugs to make me feel ill, sitting on the sofa all day drinking tea, in scilence as I can't tollerate sound, until late evening when I feel half alright, and then its bed time. Just waiting to die really.

I just woke from a long nap... sleep... at least some of the worse effects of the meds have woen down a bit now... perhaps I should find something to eat again...

well managed to sleep again last night... for all the good it didn't do after meds, coffee, food and meds, tried to sleep again, but coudln't its taht weird thing again I think, where the levothyroxin makes you 'wired' and doesn't equally raise energy levels to compensate, or the steroid does the knocking energy back for it I'm sure there might be a fine balance to be achieved somewhere, just not sure its with the meds I'm on... perhaps I'd be better off on T3, than T4 for thyroids.... certainly the pred is betterer than the HC, but, I think there are some other glucocorticoid hormones, which have even less mineralocorticoid activity than the pred, and certainly a lot less than the HC, which might work betterer... assuming I don't need any of the minneralocorotocoid activity, as I oughta still be making aldosterone as I'm secondary addrenal, not primary so ought not have lost the aldosterone ... and judging by the water retention/oedema, on HC,and the reduced oedema, on Pred, I guess I don't want the minneralocorticoid actitivy at all just starting to come out of the steroid induced stupor.... might try do something useful... have already done a load of laundry, which is now either in the trumble dryer and/or hanging up to dry I've some sewing I oughta get done, finally, altering a skirt that was a little too lose on the waist - if I'm adventerous after that, I've a dress I got second hand, which is loverly and long, but, for some really really odd reason, the 'hole' for ones head to go through.... is made to fit only a 2-year old child seriously.... - yet, on me, it comes right down to my ankles, - gona have to think about that, was only cheap, so I fancy doing some....upcycling on it, and making a larger head/neck hole, and maybe taking in the waist and hips a bit, to give it more form and shape but... taht is stretching my seemstress abilitys to beyond breaking point I fear

Have you considered the possibility that the dress is fine and your head has expanded?

I wonder how much effect your extreme insomnia is throwing off your metabolism and hormones. More importantly, I wonder how much your medical staff is taking it into consideration.

"taking it into consideration"?! nah. all patients must fit with the texbooks, no diviation from that is permitted.

9 AM cortisol is 9 AM cortisol, irrelivent that I've got serkadian non-24 and therefore my body's serkadian clock, partially controlled by melatonin, but also other hormones, including testosterone and growth hormone and cortisol is out, cannot be taken into consideration; were they to do so, they might accidentially start treating a patient, rather than treating blood resultts. seriously. that blunt an instrument. - its one reason I'm not even convinced by their diagnosis, they only diagnosed my addison's (cortisole defciency) on a single blood reading, whcih goes against all standard guidelines, and I never had a stimulation test, until months and months (if not a year), on replacement steroids; replacement steroids which basically downregulate any natural production of the cortisol, and so mean by that point a stimulation test is already forced to fail before they do it. but after a year and a half on steroids now, I doubt my adrenals could ever recover, if they were able to have done so, in the start, now no chance. My drop in testosterone is still poateianitally caused by the chemo, but oncology lied to endocrinology, and said that was impossible, and so, now I'm dependant on exoginious testosterone, which works less and less effectively, and has virtually turned me asexual basically. and the thyroid replacement makes me more ill than when I wasn't taking it I can't figure out what they're doing with me, and why they'r e doing it... TbH.

I've been out most of the past several days, problems with a chronic and relapsing urinary tract infection that's been plagueing me since July of 2012, probly will have to go to surgical options in the near future, taken together with serious computer problems.

I have a lot of reading to get caught up on.




"I doubt my adrenals could ever recover,"

I think I know what you mean.

These days I live in constant dread of adrenal stress of any kind, knowing I'd going to be prostrated afterward.

No more shifting of 10 - 20 tons of equipment over a single day.

Instead, simply shopping for groceries, or putting them away, has become an ordeal that leaves me dripping diaphoretic sweat and requiring an hour or two of recovery time after.




Appointment with the doctor in the morning.

10:00pm now and I'll have to leave here at 8:00am to make the appointment on time.




Looking forward to cooler weather coming up, temperatures forecast between 100F/38C and 115F/46C for the next ten days.

Still, should be some cooler weather before the end of September.

Absolutely! - this hot weather has been making me so ill!- partly side effects of the chemotherapy last year, maybe, plus I guess the hormone inbalances; cortisol, testosterone, oestrodyle, thyroxin, etc., etc., all have an impact on temp regulation

I might still have some potential for my adrenals to recover, depds on dose of repalcement steroid, and length of time on them, and I've been on a relatively low dose, but now for aobut a year and a half... - the weirdest thing is, all the time, its given that you dose replacement steroids, sufficient to aleviate symptoms of low cortisole; I have no symptoms of low cortisol, until I started replacement steroids - they just drove me into treatemnt whilst I was too ill from chemo to argue, and research, based solely on a single blood test of cortisol, taken at a point when I was ill for other reasons, all of which may have impacted on the result from a single random cortisol test - being hypo in all the hormones I oughta wake and be unable to phsysically move; I'm fine. I wake up always feeling fine, even if I've slept one or two hours, and its only on taking morning steroids and levothyroxin I feel rubbish and start getting cognative problems, mild halucinations, muscle and joint pain etc etc., etc., but, Drs won't listen to any of my symptoms or investigate why I respond to drugs in the totally opposite way to what I should... Today I skipped my morning levothyroxin, having had a lousy nights sleep (kept awake until gone 4 AM, with body halucinations, then woke up at 7 with screaming agony from muscle cramps). but, woke, feeling fine (once cramp pain had gone), so skipped the levothyroxin... and.... cognition is a lot clearer, I've not got the vertigo or dizzyness, and I tollerated the morning steroids a lot easier (although the two big rolls with four sausges in them, might have helped aleviate the steorids affect a bit)

i was possibly having a UTI a few weeks back; was getting increasingly incontinent, but nurses checked for an infection and found none... and then... it returned to normal, within a few days of having my testosterone IM injection hormones are way too complicated!