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

Oedema still bad, though got a little better when I moved onto prednisolone.... both arms now painful, as are both legs and in particular my right foot.
Novilty new one, is odd burning sensation sometimes in toes I assume that is the oedema still limbs so painful and awkward to move now I barely notice the messed up restricted movement on the left shoulder from radiotherapy that they refuse to even look at let alone treat not long now until the 29th and the Endocrine appointment. can just tell him all the symptoms again and see if he'll do anything this time or not maybe he'll suggest raising thyroxin as I'm still on such a low dose of it, and my 'normal' level on last bloods was only just normal which seemed pretty low to me Goiung to attempt to walk out, now, with W, to the bigger supermarket to stock up on some frozen goods, if I can walk that far, and back still so tired, despite having at least two hours sleep last night for a change Thankfully the humidity has dropped today hmm... actually, typing now, I think maybe the leftforearm has taken over from the right, in terms of hurting the most

I am so angry at all that suffering you are going through! Enough!
are you bringing written lists to your doctors? Not just words? They just have to take you seriously soon!

not at the moment... its not like they actually see me often... My GP takes me seriously, but doesn't want to step on toes of endocrine Drs at hospital; plus GP is a bit out of deapth with this really - its so complicated....

I'm not even sure anything can be done about the oedema; due to the cortisol and thyroxin deficiency and replacement meds, I don't think I can take diuretics as my sodium and potassium are always at risk of being out of kiler;diuretics I think only really remove fluid out of the blood; I've little fluid left there, as its all in the tissues, so not sure that would help.
low thyroxin could be causing the oedema, so maybe upping the levothyroxin would help, but, of course, also the reverse is true, too high thyroxin can cause oedema, and, over or under steroid replacement can too - there is very little specific about any symptom; most oculd be either under or over medicaiton, or something else entirely; I'm definately going to try push endocrine Dr to do a free T3 test (not just testing for T4), check my iron, vit D, B12, folic acid/folate, etc, as they can all potentially be wonky; indeed I was on folic acid err... or folate I forget, tablets most of last year, but got a normal reading so they stopped htem; then no more testing of my levels has been done as far as I know - also need to stress to endo that I want all my results sent to my GP, with me CC-ed into letters; they haven't to my knowledge sent my last two all day tests to my GP at least on the prednisolone my BP seems to have raised a bit, and my pulse rate too - possibly some reduction in oedema, but not hugely so - my daytime temp is often a bit on the low side, which I believe can indicate low thyroxin levels.

Quite why I have to try be my own Dr though, whilst I've got all the cognative deficites that go along with the hypopituitarism etc, is... just annoying (no as annoying as my realising I'd be working this out myself hell of a lot quicker, if I was able to think properly as I used to be able too) of course, another synario is, a lot of patients with panhypopitutiarism are, well, basically just ill constantly for the rest of their shortened lives. some do end up in wheelchairs too which I really hope I can avoid (I'd not be able to use a wheelchair, so would effectively be housebound) but, ATM, there are some good days, and I'm still strong enough to just do things when I really have too, even if I have no energy to do it

I think your GP is right not to want to step on the toes of the endocrine doctors...he should be stomping on them, preferably from a great height.

How about offering a reward for the first person to come up with a workable solution to all the various problems? I reckon you'd get plenty of interest in crowdfunding, just from some of us folks on here who are getting angrier and more frustrated by the day on your behalf!

Deb

well the GP has done that for me a couple times; writing letters to the endo dr, and also to oncology was the only way to get them to do anything 'last time'.... so much of this does come down to communication, I think* this time, on the 29th, something may haappen as its been a while since I started the thyroxin, so they can look at my levels after being on it a while, and decide to raise, or not how much I take... of course, endocrineology havne't told me this... they've been really bad at communication, as is the whole hospital system. ----

I get letters sometimes, written along th elines of:

"your consultant has requested.... a blood test... a CT scan... a... blah blah blah" ---

no mention of which* consultant, or of which department of the hospital, so I don't know if its endocrine or oncology

Feel quite good today, no idea why, I slept maybe two hours last night, so on the back of sleeping only one of the previous three nights, I oughta feel rubbish Must be extra good cheese we got in

felt supprisingly good the past few days... not so many massive energy drops (maybe sleep has been a bit better which helps). - guess the prednisolone is taking over, and the HC slowely vaccating the building as my body adapts to the new steroid done a lot of walking with W etc, mainly into town, the shops, and a bit further afield still feel generally low on energy virtually all the time, which I'm guessing is the abscence of GH or being a bit on the low side of thyroxin levels - it is a bit all kinds of everything; although I didn't get on well at all the HC, that ment I didn't necessarily take as much as my body needed; as if I did, it made me feel so so so ill... but that may have meant I was running on a constant defecit of cortisol.... and not able to tollerate the replacement form, the HC, which I had... now on the equalivelent of 24 MG HC, with the 6 MG of Pred, I think I'm feeling somewhat betterer... and the oedema has reduced a bit, though not fully (I can see a few bones again on my feet/ankle and almost make out nuckles on my hands) Still very odd emotionally from time to time, but if anything that is probably my testosterone reducing as I near the next injection, and my abnormally high levels of prolactin don't help much with emotions either I guess... and thyroxin etc all play into the psychiological and emotional and cognitive effects too, as I think does the steroids