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

I've spent a lot of time in that place. the hospital that is. We've got our own silly things about the place by now, and the routeen is so familiar it is kind of relaxing in a strange way.....

Got up .
OK, so this bit wasn't straight forward. I'd not slept. Had heart palpitations all night, and was running hot, and well, just couldn't sleep. So I'd been sitting on the sofa since 5 AM, by the time W got up at 9, and already had several cups of tea inside me. and water too; plenty of water; I was expecting they'd want my blood later!

Skipped the levothyroxin, as I didn't want to skew the thyroid blood tests if they did them (which they did).

Ate eggs boiled, on toast, for breakfast, and too prednisolone. then went to the loo. and had to then wash myself and ditch the knickers and leggings I'd been wearing. oops.

(even by my standards that is a bit early in a journal, for a TMI event!).

So freshly cleaned up, pearls on, wearing one of my 'blood letting' blouses (easy arm access), we left for the bus

Bus was late, so we were late getting to the hospital, but not by much really.

The bus ride was differnt, and I was really impressed;

10.59, driver pulls in, parks and announces the time.

Total scielence on the bus, for the two minutes, no arguements, nothing

Thence we carried on the way, and got to the hospital.

First one of our 'in' traditions.

"is she there?" "is she there?".

"Yes! she's there! and she looks bored out of her mind! she's wearing the same cardigan! she's coding!"

OK; there is a window, on the side of the hospital, coming up to the doors we go in by, with a sign above it, announcing what that dept is; it is;

"coding".

no. we've no idea what it is, but the girl who is nearly* always there, looking so boared, doing 'coding' we assume, is a constant thing on our trips to the hopstal all of last year and this She's coding! coding what? no idea... no idea at all...

Thence into the hospital.

First stop; hurrah! they've got water in the dispenser inside the main doors of outpatients; one. two. three cups of water, straight down (I take increasing my blood volume serious; I've got very very bad veins, and although I cna't feel needles any more, the nurses get really worried aobut sticking needles into me, so I make their life easier, and, well, it does mean less bruising )

Then, down the first cooridoor.

where, we walk past the enterence to the coridoor to oncology; been down that one a lot!

so.... as we alk past the enterence to the corridor, I utter the now infamous words....

"big balls".

done in my new really low pitched scarey voice (side effect of the thyroid thing? my voice has lowered pitch...).

OK. Big balls. is the Dr/consultant in oncology who I saw a lot, for the first few months of treatment, every time, before each chemo, to discuss side effects, blood results etc.

The name is... err... because.... she refused to examine my balls, "unless they're swollen I don't want to know" - in response to my having noticed their shrinkage (when my testosterone started lowering).

(yeh, that must be TMI).

She's Also got the nicname 'spotty', as she once (as a senior consultant), wore a very badly chosen, spotty dress.... - she was/is far too on the 'large' size for it to work

And, so down to the long long long long corridoor that leads to the 'treatment center', and endocrinology is part of the treatment center.

This is now;

"Cordaroyd corridoor" - my origional Dr in endocrinology, the prof, only seems to have two pairs of trousers (everyone in the hospital knows this); yes, cords....

so, to the endocrinology dept.... signed in, apologising for being late, went through to wait.

Stage one, nurses...

Weigh-in.

Oh. my. BoB. I've gone up again 104 Kg now (I was about 79 or 80 KG before chemo, and before starting steroids last January/febuary).

Then blood pressure... sitting first, then standing... a lot healthier now; no where as low as it was when I was on hydrocortisone, which made me faint constantly, and no big drop when I stand up (postural hypotension), which is a good thing

Then back to wait to see consultant.

ahh.

I've enertered a differnt universe.
The new, Dr,-
She looked at me.
She talked to me (not at me, and not at William).
She engaged in conversation, listened to me, answered questions etc.

She
Left her chair, and examined my swollen feet, ankles, hands, arms, shoulders.

She listened to my chest (checking for oedema on the lungs; they're clear) - she even laughed at my joke when I said; "good job they're clear, if they're still congested after I went to the effort of quitting smoking last year, I'm gona restart again...."

She listend to my whines about steroids, about the oedema, about the heart palpitations; we went through my medical history (as she'd not seen me before).

She's reduced my steroid dose, from 4 MG in the am, to 3 MG (keeping the 2 MG in the evening).

She's going to write to me, with results of today, and depending on the thyroid levels, will up my thyroid/levothyroxin dose.

Also, and as a consequence of talking about my 'medical history' she's going to find, print out and send s all the information about my hemoridge last year (we didn't get anything about that as it all got lost by the GP).

She ordered for me to ahve an ECG again (which we had there), and for a urine sample (which I provided; to check for proteins in urine, in case there is a kidney problems, that might account for the oedema),

She said she'll organise cardiology for a ultrasound/angio-whatever it is, if i need it (having told GP tried and the hospital refused),

She eventually agreed, that they'll measure my FSH and LH just before mmy next testosterone injection (to see if there is any evidence my pitutiary has recovered FSH/LH function (they trigger the testies to produce testosterone)).

gosh. feels like more progress with endocrinology in a hours meeting with her, than all the previous vistits since last year.

Forgot to ask about the bone density scan which is anoying, but we covered a lot, and she's making the next appointment in only two months time, not three

and, for full weirdness; ahving not slep last night, I felt way better today than I have in ages.

Oh, and the diarrhea this morning.... W said his stomach is a litle upset; think that stew we had last nightg was sitting about a day or two too many oops - I'm more prone to infections of course, etc., due to the steroids suppressing my immune system.

I'm feeling a lot more posative than I have in a long while, though still very confused by the way I get opposite reactions to half the medications I think more is yet to be figured out if only we can

Oh that's so good to know that someone is listening to you at last. Feel a bit tearful about it tbh. Hope this is a turning point.

Mol x

What Mol said

Also, I'd bet that you were more than happy to give a urine sample, after all the blood-volume-increasing you'd been doing!

Your post made me laugh and cry. I think that consultant is lurking here on hootoo and has read your journals.

That is good news that you were listened to and have a plan of action too

Will your voice have lowered pitch because of the added testosterone? Glad to see you can still wear your deep voice with pearls, though

I saw on twitter that the doctor had actually treated you like a person so was quite looking forward to hearing the details. It's splendid

I wonder if just being listened to contributed to your feeling better yesterday? Knowing someone's actually taking you seriously must reduce some stress, if nothing else.

I really, really hope this is a corner and you're being allowed to turn it, that you'll now get some proper results and get all the various things balanced and working together, not against each other.

Very pleasing journal to read. Even with the various bits of TMI

Deb

Rock on, Princess! this doctor seems like a real person! I'm so glad!

Many hugs

Yes... exactly that; "like a real person"! --

I know I'm ment to be a scientist and all that... but, I'm more than willing to believe, and slightly inclined to do so, that an aweful lot of how much better I feel, already, is just that someone has ing listened to me. - its not much fun being constantly treated like an idiot; having Drs tell me 'facts' about the treatment, that, because of my background, and, yaknow I've now been studying endocrinology for a year, I know are just wrong, and then not having any voice to counter what they say, or contradict it... - in some cases I think actually they just dont' understand it properly themselves;

E.G., I was told, a while back "but your thyroid gland probably still has some function, so that the 75 McG is sufficient to bring your levels up"- many people are on as high as 175 McG or even 200 or more, a day; the Dr who told me this, either was lieing (not bothered to look at my results and increase my meds?); or does not understand the biochemical functioning of synthetic thyroid meds in the body; the levothyroxin works, foremost as T4, one version of thyroid hormone, which is converted, in the body to T3, the active form fo thyroid hormone; but, and crucially; it also works to supress the pitutiary gland, and stop it releasing TSH (thyroid stimulating hormone), the molecule which 'tells' the thyroid gland to release thyroid hrmones; this is of crucial importance, as the Drs there should know; in cases of thyroid cancer, you want* specifically to suppress the TSH being released, as its release, and stimulation of the thyroid gland, will stimulate cancer cells in the thyroid gland (I don't have thyroid cancer, but they oughta know this they deal with lots of thyroid cancer patients); TSH wil also stimulate goiter, the swelling of the thyroid gland, present in many thyroid patients; the levothyroxin then, both stops the natural production of thyroid hormone, lowers TsH levels and, acts as a resplacement for the missing thyroid hormone that the body is then not producting;

Also, raised circulating levels of TsH can make a person feel unwell.... - my TsH was about 0.19 before I started on levothyroxin, it is probably* virtually zero now; some people with underactive thyroid end up with huge raised levels of TsH in the hundreds!; and levo can reduce that to less than 1.

so... is that a Dr actually being really really stupid, or just.... brushign me off?

Its horrible in either case, that I get treated by them as I'm some kind of idiots, and, they constantly want to tell me/you/patients "Endocrinology is so complicated, we're the only epopel can understand it" which is... just ,bleep> - I can figure it out and I'm still full of brain fog, and two brain hemoridges under the belt.... so far

yeh. I think theres a big psychioological effect already as a result of just being listened too

well. feel fine so far today not 100%; I doubt that is ever obtainable after what happened to me last year; weather the cancer, the panhypopituitarism, or my second brain hemoridge... - of course its now basically impossible to pin prick which effect I have is related to what; some of the brain fog, cognition stuff, is probably the seocnd hemoridge, some may be residual chemo brain effect, and a lot of it is most certianly the thyroid hormone low (can cause cognitive problems), and the lack of growth hormone (not replacing yet), and of course the effect that prednisolone has on the brain

if I ever regain any concentration I oughta write some guide entrys on this stuff.

just noticed; I'm typing a lot faster today.... despite having taken the levothyroxin and pred.... - the new lower dose of pred; sure, its only 1 MG less, but that is 4 MG reduced to 3, in the morning dose... so 25% less? - and each 1 MG pred equates vaguely to 4 or 5 MG of Hydrocortisone; 5 MG of HC was enough to make me feel very ill; 10 MG HC was enough to virtually put me in a coma/hypoglycemic state....

I'm a lot more positive too... all of a sudden, and that has to be good...

not sure why... maybe as I took the levo yesterday in the afternoon, but, my morning ablutions today was... normal


oh; the deep voice; thyroid stuf f can give a deeper gravellier voice... ; guess maybe its the testo too, but I had noticed my vvoice had changed, I think, even before the testosterone injections, and... actually thinking about it, before the levothyroxin.... - was it after my radiotherapy, taht was vaguely in th eneck area too... maybe... - something probably

Right must find something to do whilst I've a little bit of energy floating about for once; off out tonight, to 'Butch annies' - seriously. - its a burger resturant.... - we're raiding it with a bunch of about 11 or 12 other lesbiens and gays (think I'm the only blind transvestite with a moustache in the group), so that might be fun, and after the meal we're going to a nearby pub I've not been in ... for years and years... so must make sure I beautify myself early today so we can get out for that; I've timed my morning pred, so the evening dose can be taken at the resturant, wtih food actually, must go look up their menu online

A listening ?

Sounds like a keeper

gona try keep her... though sadly we'll lose her for part of next year, as she's off from work for six months, maternity leave which she told us, and we said was fine, we still wanted to keep her as our Dr (guess I may have one or two appointments, then, next year with the prof or another Dr).... and I bet I know what my Drs LH and FSH levels are