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

But the problems with not thinking straight are just as much symptoms as the physical ones, and to us, your posts are pretty coherent. You don't contradict yourself anywhere as far as I have seen. Maybe you should contact the media? Look East are probably having a dull time of it at the moment anyway, beings as it's the silly summer season.

me... coherent? oh nos....
its worse than even I thought.... surely my becoming coherent must be about the worse symptom yet I've had?!

I can go up and down a lot (yeh, like no one noticed that), - A lot of people with panhypopituitary disease, or indeed, just the addison's/hypocortosolism, often get misdiagnosed with depression and simular things; there is an element to the low cortisol, that mimicks depression, but which isn't depression... - its kinda 'weird', with a capital 'odd'.... err... - Like today; I'm hypersensative to noise; to the point, where I can't hear anything I'm doing when there is any exoginous noise at all... - very annoying when I'm so dependant on sound, for obvious reasons, and when that happens; I get very 'enclosed' in, as the universe shrinks around me, and I have to just try 'get out' of 'inside myself', or I become totally cut off, as I try to block off any exoginous sound... - almost autistic in a way? err, very weird whatever it is... - and then a very sudden noise; police syrines, or just a door slamming outside, or a kid screatching, and I 'jump' like something just exploded in the room in front of me... err... most annoying to say the least...

day to day, some of the variability, mentally... psychiologically, is, I assume, somewhat caused, by where my daily 'fixed' amount of cortisol/steroid doesn't match the exact requirement of that day (burning it up quicker with the gym/exercise?; but perhaps simularly now needing less on non-exercising days, seeing as how I've lost one fifth of my body weight since the start of the year)

Plus over the weeks, months, my testosterone dips down, as I get further away from the last injection, and closer to the next one. Simularly, over that period as my testosterone IM injections 'runs out', my oestrogen goes down and up, in odd ways too...
if that makes sense - Mind, judging by some err... physical changes, I do seem to be getting a testosterone 'top up' from the gym/exercise..... which as far as I can decipher, oughta be impossible, as the method that normally* works, in a normal* person, is via increased LH output of the pituitary in response to the physical 'stress' by exercise, particularly strength exercise (which I do a fair bit of now) -
My moustache needs trimming again today; I trimmed it yesterday and its grown a good 4 MM since yesterday
Mind, my 'bust' measurement is an inch higher now, than it was (so a bigger differential between over and under-bust) (its not all negative... its a kinda novel experience as a bloke, growing my own month by month, at my 'advanced' age


having said which, maybe my moustache is an illusion or not real; I was asked by a guy in the pub last night,
"how long since 'you became a woman"
- I'm not entirely sure he was very saine though . . . come on... I'm clearly a bloke wearing a skirt, there really is not an elks chance in a monsoon, of remotely mistaking me as an actual female err... specially not given my bicepts now, and those weird muscly bits half way between my neck and my shoulder edge... they are weird... never had those muscles there before <

Maybe I should try push my GP more, as they are supposidly the closest thing one has to a 'medical administrator', who is ment to coordinate those with 'complex' medical stuff like me, and coordinate the various hospital differnt depts into some kind of logical cordinated thing... yeh, about time I saw the GP again; Luckily, just found out this week, a female GP who's really good (I think she's relatively newly qualified), is back at our surgery, and I've found her useful and competant in teh past at least... maybe I'll try book in next week to see her

Just for comparison to your NHS, my insurance policy renews in July, so I've got a new deductible to meet. My prescriptions are not covered until I meet my new $2000 deductible (it was just $1500 last year). Come Monday, I'll be placing my first refill order of this insurance year. The "good" news is that one order will meet my deductible as the Androgel will cost me $1943.05 for a 90 day supply. Add to that $44.44 for my levothyroxine, $30 for my statin, and $7.11 for 13 vitamin D caplets, and that's my deductible spent.

I'm not sure, but I think even after I meet my deductible, I'll still have to pay full price for the Androgel, but only until I reach my out-of-pocket (OOP) maximum. The "good" news is that's still just $3000 for the year.

At leas tthe meds here don't cost me anything, well cept for the calcium and it D etc, that I buy myself.... having said which, its still a little worrying that my endocrine consultant didn't know liquid levo existed, until she consulted another Dr and a pharmacist and I still don't understand this 'random throw drugs at a patient' approcah; rather than testing, to see why I can't tollerate the regular levothyroxin... I'm kinda tempted to pay for a private blood test, now, before i get re-poluted with synthetic levothyroxin, and have my TGBP testing, s well as tesintg my RT3 etc, the hospital won't ever do full testing, just the absolute minimum, that won't show anything cept for what they're looking to find, and therefore what they do find If I can see waht my reverse T3 is, AtM, whilst not medicated that would also be of use, for when/if I'm back on the medication, and simularly, finding out the thyroglobulin binding protein level, in my blood, can help distinguish waht my FT3 and FT4 levels actually mean, and may actually be able to show that I am, or am not, hypothyroid, as you can't really DX hypothyroid, using the very nominal testing the hospital does and i dont' particularly want to take a med that makes me so ill I can't leave the house, to treat a condition, I might not actually have... even if the Drs seem to think that's a good idea

There was a story on the evening news last night about using genetic testing to target medications for patients who have bad reactions to their medications for depression. Being a medical story on the evening news, it was rather lacking in detail and overly optimistic, but the idea of tailoring medications by genetics seems both promising and ambitious.

that could work for a lot of things... but specific stuff already exists for a lot of medications, based on knowing how they work in the body, or, in more general terms, other medical things which can mess with medicaitons, such as poor absorption when gastrointestinal disease is present at the same time... - and alergy tests can be done for most if not all of the common occipitents in the tablet medications, which mght explain a few things with me, as most the occipitents are pretty common, and the levo various brands shares most of its ocipitents with the hydrocortisone medication I didn't get on with; and having had hydrocortisone now, I.V., and I.M, I know that route of administration is fine, for it; its like a completely differnt drug, as compaired to when I was taking the tablets every day, and just sicker but, unless I suggest it to the Drs, its like they have no ability to think for themselves, and order such testing, or even suggest it.... - it'd be fine, were they to say 'we think you should hav ethis test, or procedure, or whatever', but then say they wont' do it due to cost; then at least I've the choice to actually recieve treatment/testing etc, and just pay for it myself... unles sof course they just are ignorant and incompetant... which is looking a distinct possibility IMO baffled still by the publicshed paper by one of my specialists, listing all the extra tests you do if a patient doesn't react as expected to levothyroxin; I didn't react as expected to levothyroxin; she ordered none of the extra tests, and rejected my suggesting to her, that we got bloods sent to a differnt lab, to use a differnt testing procedure on them, to test my levels.... even though that was the first course of action she herself had stated in the paper, as being waht Drs should do in the case of, patients reacting oddly or 'incorrectly' to meds I just don't understand...

Sounds to me like it would be a good idea to pay for the extra tests if you can't persuade the endocrinologist to read her own paper, just to put your mind at rest if nothing else...

It still seems suspicious to me that they diagnosed you with stuff without the proper tests - it wouldn't be so bad if the medication didn't have the effect that not taking levothyroxin is making you feel better than when you did take it (as if you're not hypo after all), and you're having to give yourself extra exercise stress to burn off the steroids that you're supposedly low on (as if you're not hypo after all)...

Good luck with it all...

The endocrinologists are correct, in some respects; it is very complicated... all the hormonal stuff... though, oddly, not quite as complicated as they like to make out... - The way they t talk about it, its as if its some amazingly complicated interconnected system, no mere mortal can untangle... which just isn't the case; theres just a lot of stuff to consider at the same time....

Strictly speaking thy have done the right tests, (for the most part), just not very consistantly, and not necessarily all at the right time, and, there are additional tests, when the more standard ones don't entirely uncover the true story, that one oughta then consider.... like measuring the reverse T3, and thyroglobulin binding protein.... - the thyroglobulin binding protein, is ment to be there, in our blood; but if you have unusually high levels of it, then more than 'normal' of the T3 and T4 thyroid hormones, are bound to the proteins, and so don't register or show up on the typical blood tests for measuring the T3/T4 values; so you can have low T3/T4, because there is a lot of the binding protein, and so a goodly increased quantity of the thyroid hormone the body is making doesn't show up, on the test, as the test won't record the levels fo the hormones bound up to the protein.... - simularly, if you've got unusually low thyroglobulin binding protein, then you'll get higher 'normal' readings/levels of T3 and T4 in the blood test, and so appear to be not hypothyroid, even though your levels might actually be lower than 'normal' as 'normal' range is expecting a higher amoutn of the hormone, to be undetectible, due to being bound to the protein... - Simularly, a 'normal' T3 reading, might not be 'normal', if a lot of the T3 measured in the normal blood test, is actually reverse T3; reverse T3 is produced by an enzyme, in the tissues, and is biologically active T3 thyroid hormone, converted into a biologically inactive form of the hormone; basically a post-hormone release method of the body to modify, in this case, rduce, the biological activity of thryoid hormone in the body...

I think a simular binding protein to thyroglobulin binding protein, also exists, and binds to testosterone (I think from vague memory its called sex hormone inding protein or something equally unlikely) so I guess the testosterone test can be off too, if they're not measuring that binding protein at the same time... and simularly, enzymatic converstion of testosterone to oestrodyle can occur in the tissues, so mess up the results on that sid eof things

Ah - binding protein makes a lot of sense to my amateur knowledge

Sounds like testing for it is a really useful thing to do, especially when someone doesn't react as expected for someone average...

I hope you do get the extra tests, so as to just find out what that picture is if nothing else... (you can't be described as "average" for several reasons indeed... )

thanks I'm struggling to find any simple way I can get the tests done locally and just pay for it... which seems odd... theyr'e all listing standard thyroid tests, etc, but nothing as specific as I'd want, and for some of the more specific ones, they're not even listed full stop and they seem incredibably expensive.... even for just the regular standard ones....I'd want to add in tests for things like DHEA too (the most abundant adrenal hormone, but one the NHS won't test for), I may just have to leave it, and go just by symptoms, I.e., see what the efect is when, err, if I ever get prescribed the liquid levothyroxin... but it seems writing a letter from my consultant to my GP to prescribe the med is too much effort and not worth my specialists time to bother, as she's still failed to do so

Bring a checklist of all the things they need to address, things they've forgotten to do, things they've promised to do, &c.

Leave a space for comments after each and have them write down what they will do to address the issue and when to expect it to be done.

They may not address them, but at least you'll have a record of their malfeasance.

ahh; I save that for the Drs! - the nurses don't necessarily have much input in that way... they just do what the Dr tells them; as in what tests to do etc.... But its getting close to the time wehre I need to write that as a formal E-mail to the clinic lead, and the Dr, like I did last time, to get them acting a bit more normally towards me... but now I've got the same wit cardiology I guess I'll have to write to them seperately. - I try be nice to the nurses, they're useually nice to me, and try to get them to help by being nice to them, to see if they can put pressure on the Drs to do anything never works htough. not in three years anyhow.

Have you asked your friendly neighbourhood pharmacist about the tests? She may have contacts or knowledge beyond what's available to the layman.

I agree that if you can afford to, getting some kind of tests done would be a good thing. It boils the blood to think you need to even consider it, but ultimately if it helps it's worth it.

Deb

I agree with writing a list. If I ever have more than one thing to speak with a doctor about, or have questions I want answered, I usually write them down, so I don't forget them.

I wasn't seeing the Dr today, just the specialist nurse for growth hormone monitoring tests; weight, hip and waist circumference (weight down 20 KG waist and hips both reduced by 10 CM) and BP (low as useual), plus a blood draw to test IGF-1 (a measure of the GH hormone), plus other measures they do as standard (sodium, potasium, plus my thyroids, FT3, FT4, TSH), and the nurse decided as I'm due my next testosterone injection soon, to do a testosterone test too... plus I think today they measured the colesterole and lipids, as that is a measure monitored with GH replacement chatted to nurse also about how I'm getting on with injections (fine), and told her I've switched to the new injection pens.... and pointed out I was wearing the jeans today she said I'd never get into (bit rain looking out so I decided not to wear a dress or skirt)

Seemed to find getting my blood out trubblesome today... I felt the first needle go in (just), and that drew out some* blood, then she prodded a bit... and apprently put in another two needles (which I didnt' feel), to get enough blood out

Mentioned to her some of the outstanding issues.

She found a letter on 'the system' from my endo consultant, which we'd not seen; my GP was cc-ed in, but I wasn't so we got a print out of that, in its full apauling grammer and punctuation it was a letter sent to my cardiologist, and my GP CC-ed in, but me not
Questioned about the X-ray; no results on the system from it at all so that appears to have vanished pointed out no letter prescribing the liquid levo has seemd to be sent.... she confirmed that is the case; and is going to conttact my consultant, to ask why, or say 'do it'... (consultant may still be waiting for reply from cardiologist; to OK my starting liquid levothyroxin; as this can increase heart activity, or have some other affect on the myocardium)
Asked about getting the nabido (testosterone) prescription from the GP; we now have a letter to give to GP for this to get it prescribed, by our pharmacy, hopfully in time for the injection in two weeks
Our other questions, regarding the testosterone, about if we need to refridgerate it, and no we don't

Nurse mentioned some people there, or at least one, is using an adapted insulin pump for hydrocortisone, which may be an option for me at some point; hydrocortisone isn't so hard on the bones as prednisolone is; and although I can't tollerate taking hydrocortisone tablets, I always got on better or... OK... with the IV hydrocortisone or the IM injected forms previously
Nothing on her system at all regarding cardiology and the results of the vasculature MRI scan... - but, of course; the heart hospital is using a a differnt computer system to the main hospital, and she can't access anything on that other system

Administrative up after administrative up I feel some strongly worded letter writing is required, first off to the local healthwatch, CC-ed in for patient leaison, and CC-ed to the secutary of endocrinology. in addition to anything else, asking why they're not following NHS practise guidelines on communications for patients with special, communication and sensory needs (I.E., mee.) - and thereby breaking UK law under the DDA as of two years ago, when it came fully into force for the NHS and all related health providers, to meet th e guidelines in full and provide information in accessible formats to patients; interestingly, according to which guidelines, an accessible format, can* include electronic, as in E-Mail; I've been told before by endocrinology they can't E-Mail me results etc, due to 'information security', or ... confedentuality or somet ing rubbish

My arm hurts. - going to fix it with some weights at the gym tomorrow that oughta teach it

yes; may ask the pharmacist tomorrow, when picking up my months regular meds, about local places that are best to go to for private blood tests (minus needing a consultation, I can understand and interiptp the results fine myself, without needing a consultant for post-blood results) oo... must be lunchtime (exercise today already as we did about 50 minutes walking; on the way back we got off the bus early, to get to the shop where we buy our supply of Indian tea... we bouth every packet of it they had in the shop )

got some more exercise... half an hour round trip to pick up a parcel from a pickup location new talking kitchen scales the old ones had had it...

and...

An E-mail back from the endocrine nurse who I saw earlier. she's spoken with the Dr, no doubt held the Drs hand, for me, and instructed the Dr that if she wants me to take a medacine, the Dr has to prescribe it... I should be able to get the prescription on Monday OK. so. It turns out there's a simple explination, my Consultant is just a complete incompetant moron. at least I knwo that now.
also asked my Dr, to give me results of the spine X-ray, so I assume I may* get a letter at some point I.. just don't get these consultants... these Drs... they're just so hopless.... why not just prescribe the med, why make the constantly working her off, endocrine nurse, run round, chasing up her lax inability to do her job... and force W and me, to remain hostage in the city, for no reasons, waiting on her to do things she isn't even intending to do until she's forced nearly dinner time