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

Maybe, towards end of this week coming, whilst we've seemingly got some empty days... next hospital appointment for me isn't probably until oncology on the 7th I think it is, Sep, though I'm still waiting to hear about the bone density scan, and I should be getting a phonecall from the pharmacutical company at some point, who organise the growth hormone stuff themselves (they have their own nurses etc, so its sort of run seperate to the NHS, but NHS funded to the tune of £3K per person per year on GH replacement ) anyhow, still waiting ot hear about the GH, as the surgary have to write or soemthing to the endo unit at hospital, fo rthem to get in contact with the pharmicuticle company, to start off the process, and train me to self-inject and suchlike and give me a million and one bottles of GH to have in, plus all the needles, and my own sharps bin etc so we might rush off whilst we dont' ahve to worry about carrying refridgeration for GH and needles and BoB knows what with us, every time we go anywhere not sure where to go though... Oh, plus appointment in a week or two, for the first lot of the new bathroom lot, to come ournd and measure up and qote for a new bathroom etc if we can at least get the bathroom done by the end of the year, then we can think about the kitchen and utility room at last... the kitchen is only just usable really now... and once that is done, we can do more Painting and decorating, before thinking about flooring for front room, and kitchen/utility room etc... then it oughta just be downstiars staircase and hallway to do, plus the front door, and finally replacing all the internal doors, and then, thinking about chaning or moving, or altering actual furnature etc which might be awkward to do, for the next sixth months, after GH starts, as I've a lot of hospital visits to do with that, in the initital trial period, whilst they assess eligability for long term use, and also sort out the final 'long term' stable dosage on it must phone endo nurses monday see if I'm allowed access to my recent results from bloods, if they've got them, and find out if they wanna up my thyroxin or not, and if so, beg them to write a letter to my GP to alter the script for levothyroxin, as appropiate... experimented today, took an d extra 25 McG levo, and felt a ton better, and still no heart palpatations.... just the weird internal tremmor/vibration thing, that I think is a symptom of low thyroxin anyhow if I don't push endo on this, then they'll not tell me my results until next endo clinic, some time in november... and I should according to guidelines be on optamul replacement level for all other hormones, before starting the trial of GH... which they don't seem to be bothered about adhering too Went to pub for a bit this evening, but came home early as I had desperately to get to a loo I could use

That internal vibration/tremor thing you mentioned sounds exactly how I feel when my blood sugar levels drop below 4 & I know it's time for a swig of lucozade.

Actually, I've heard that thyroid & diabetes come under the same medical umbrella. Hmm...getting to the end of that sentence I realis I'm not sure what point I'm trying to make

Deb

Can I just throw an 'e' into that last sentence? It appears I can't spell today.

Deb

your spot on; I should be having my blood sugar monitored, but they've never measured itk, once; the steroids I'm on, cause diabetes melitus in longe term use; Its the main reason I didn't get on well with the fast acting steroid hydrocortisone; talk about sugar spikes!- every morning I went into basically a diabetic coma for an hour or so; coudln't move or talk- Drs didn't even test my blood sugar levels, and didn't believe me when I told them how badly it affected me....

Thyroid hormone also regulates metabolism, so affects fat and glucose metabolism, and cortisol/steroids basicallyl act opposite to insulin activity; though oddly in me, the hydrocortisone is ment to cause a blood sugar spike, but I found the opposiite; last year I spent the year always carrying snickers bars with me, and I'd feel faint, just walking up the road.... two minutes after a snickers, I was fine. - seem somewhat more even-out now, as goes spikes and lows, but its still not right. But Drs won't listen to me, and won't do anything, so there isn't anything I can do "just keep taking the drugs, as we say, and wait for the oestroporosis and bone breakackages to start, and for the diabetes and arthritus to start, from the side effects", is their basic advice.

I was on steroids for a year and a half, before I found out the bad affect on calcium; with 6 months of use an average of 10% to 20% bone mineral density loss, is expected. EXPECTED. so.... why didn't they tell me to start on calcium magnesium and Vit D supplimentation from day one? no idea. i'm so not looking forward to being in a wheelchair, and with diabetes too, on top of the other hormoneal problems, due to their inability to follow clinical practise guidelines.

It's absolutely shocking. Every time I read about one aspect of your treatment or another, I wonder if any of your healthcare professionals are trained. Or humans. You need some kind of co-ordinator to pull all the strands together.

Also perhaps remind some of your doctors about that song Dem Bones:


The toe bone's connected to the foot bone;
The foot bone's connected to the ankle bone...


So they remember that actually, one bit of the body's chemistry affects another bit of the body's chemistry and that each condition is not sealed in a box away from the rest of the conditions.

How have you not ran amok with a baseball bat yet?

Deb

When I went up to the hospital the other day, for my testosterone injection, plus bloods, I happened to bump into my main endocrine nurse in the corridor, as we neared the endocrine center....

She asked me how I was. so I told her.

She acused me of being agressive, when all I'd done was state how frustrating it is to constantly have all my symptoms ignored, and to feel as ill as I do, when I take the meds (but feel fine when I don't take them), and how I felt like I was being treated like an idiot, especially when the Dr, in my only consultation I get every three months, won't listen to me, and actually starts leaving the room, after he's 'spoken at me' about figures etc, when i start trying to tell him of the side effects i have to the meds (some of which can be fatal if left untreated, as they are being).

She just acused me of being agressive, and threatened they should lower my testosterone dose (which as it is, only lasts for about four of the weeks, of the six, between IM injections).
My insomia gets worse. about 8 hours sleep now. oh,; per week, not per night. Thinking I'll just taper my dose of steroids down again, until I go into crisis and get rushed to hospital again, that was the only trigger that they paid attention too, to let me switch steroids (the ones I were on caused halucintions, paranoia, anxiety, suicidal thoughts, and comotosed me every time I took them ... every time... ) Might be worth me trying the GP again, but I get the feeling, from seeing him or her before, that he/she is as frustrated, and just as imputant to actuall do anything himsels/herself... i'm not alive, I'm just not dead yet.

It's well past time for you to start firing some doctors.

Did you ever find a patient advocate?

If that endocrinology nurse actually recommended changing your testosterone dosage based on your perceived aggressiveness, without actually investigating whether or not your complaints are valid, she should be removed from your healthcare team and possibly from the healthcare profession.

Your symptoms are real. Your symptoms are troubling.
Someone needs to coordinate your healthcare and communications between specialists.

And you shouldn't have to put yourself in crisis to get some results. I'm pretty sure it's not a good idea although I can understand your point.

Deb

Also, time to alert the media. Make yourself and your case known. Sometimes, I think that's the only way some people in charge start listening, after you've put the spotlight on THEIR idiocy, and they realise the shit is about to hit the fan.

I so hope you get some adequate help SOON!


(excuse the shouting, but enough already!!!)

There are no patient advocate?

services where I live.

I can't fire my Drs, I don't hire them.

The Dr I have is ment to be one of the best, I know of people who've travelled hundreds of miles, so they can see him, therefore most other endocrie Drs are worse

I might try writing a letter to the Dr/consultant. see if I can get anywhere, like trying to actually establish which protocols they want to use, for patients.... nurse seemed happy enough to suggest looking at patient reported /observed symbotpms, aka agressiveness, for potential adjustment of testosterone dose, but Consultant doesn't even ask me about symptoms, yet, in all the literature I've read, and society guidelines etc, patient reported smptoms and side effects are ment to ne given equal if not more weighting, than just blood results. Its all so illogical I can't deal with it, they're all so totally irrational.

going off the idea of having a break away now... Just thnk I'm too rubbish to enjoy it ATM, were in town earlier,and had to come back early as I was feeling so rubbish no idea why, still seems to be hot flushes despite having had the testosterone injection Felt fabulus this morning when I woke, then progressively more ill on taking meds May try phone endo nurses this afternoon, see if they've any blood results and if they want to share them with me, and/or alter any meds..

Besides what you write here on your h2g2 journal, you should keep a daily journal of your symptoms and your medication dosages and times. Maybe that would be helpful in explaining to your medical staff just how you're feeling.

I'd just print out all these journals and hand them to them to read through.

Their heads would explode!

Oh! The Outsanity!

They won't let me explain, verbally to them, certainly in the Dr/consultant 's case, the symptoms... I think the chance of them reading//// waiding through reems and reems of my journals... would ... get me an instant refral over to Fulborn.... (local mental instritution...) slept most afternoon today, after having felt so ill whilst in town... now cooking up dinner... and feeling a lot better as drugs have worn off over the day, and the 2 MG evening/late afternoon steroid dose doesn't tend to hit me like the morning one does

That's why I think a simple symptom/dosage diary would be better. You could keep it in a calendar, or on a simple note app on your mobile. Just make short entries for when you take medications, hormones and whatnot. And how you're feeling in the morning, afternoon and evening.

A pattern might emerge. You should also note how much (little) sleep you're getting as well.

Brevity is key, but be thorough. Don't omit symptoms. Just make a note of them and their severity.

that might be a good idea.... I did try start keeping a diary type thing, to explain how ill the hydrocortisone was making me, in case they got extra stupid about switching me to the prednisolone, which is better, but still a steroid much the same affect, just... not so nuclear bomb strength in the way the HC used to knock me out
Mind, problem a lot of the time is I don't know how I feel; the steroids numb my brain so much, I can't... err... its like the conscious and err... thinggy bit stops working all together... questions like 'are you hungry', or what do you want to do/eat' etc., etc., don't have any answers as 'I just don't know' just feeling so constantly spaced out, disconnected, from everyting is so weird... like I@m here but not here... I just cooked dinner... but it was like I'm not doing it, just my body/hands know what they're doing, so I let them do it, and ... it just works/happens

one nice thing, today, got a E-mail/letter from Maggie's the local cancer support charity, thanking W and I for the cheque we gave them, from the money we got gifted to us at our wedding Mind, I do feel kinda odd now sometimes, going along there, as I am less a cancer patient than all these side efects from the endocrine stuff, which as it turns out, are the main symtpms I were putting down to chemo side effects, were just the steroid etc, hormone sideeffects

Never got round to phone endocrinology today, must try tomorrow, if I can think and speak properly enough to make it make any sense to do

Maybe at those type of times, just put down "brain fog", or "wibble", or have W add notes when you can't.

brain fog is... just about 100% of the time... cept for now of course... as its nearing bedtime and my head feels relatively clear - I wake up from the drug induced brain fog, just in time to need/want to sleep such ar ethe contridictions of life.... cconsidering trying something differnt with the meds soon.... just in case.... - switching from split dose prednisolone to the more normal dosage, of once daily, single dose of it all in one go, first thing... just in case that might make a differnce, and then, if not any better, try the same, but a single dose of the steroids, at night, rather than first thing... (absolutely wrong way round, but given my stupid sleep non-patturn, it might just work the upsidedown way ) we'll see... definately on the feeling better side, though, since I decided to up my thyroxin (levothyroxin) dose... just need some actual medical go-ahead for that, as otherwise I'll only have 3/4 of the tablets I need, per month, on the script