I still think I have Secondary Adrenal Insufficiency. I've had it before*. The symptoms fit. The sequence of events and symptoms fit.
It makes the most sense.
SAI is supposed to be common too, making it more likely than other things.
So all these forays into other ideas are nothing more than idle due diligence. Some other diagnoses kind of fit, but they don't have the sequence of events behind them that SAI has.
If I hadn't been in the hospital and on so much prednisone and not had SAI before, I would be singing a different tune right now believe you me.
Even if there is some other medical issue, SAI is still a problem given what's been going on. They still need to check my levels and develop a decent taper and monitor the withdrawal. SAI is not going to go away no matter what happens. There still has to be a wean.
Also, the chest x-ray came back clear. Can't even see the tumor. It is an itty bitty thing.
I bet it will either be gone or won't have grown. I hope it was just a byproduct of how sick I was in March if that is even physiologically possible.
I know one person who knows one person who had a similar tumor situation and their itty bitty tumor was gone on the follow-up CT. It doesn't mean anything but I prefer to think about that person rather than the hubby's 80something relative getting 1/2 a lung cut out this year due to a similar, albeit much larger, lung tumor. (They are recovering well, by the way, and still living at home.)
So I'm still in the SAI camp. Do I believe there is a broader underlying issue at work? Yes, but I don't believe science can do anything about it, much like PCOS was unheard of 15 years ago when I started being symptomatic (and I don't think I actually have true PCOS anyway, but that's a whole new post). If I ever find a doc who wants to do the work to really figure everything out, then we'll do it, but until then I will settle for...
1.Being able to parent and be fully present with my child and family.
2.Being able to exercise without having to quit half way through or give it up completely.
3.Cooking and cleaning my house.
4.Driving without hitting anyone or anything.
5.Shopping/Leaving the house whenever I want without worrying about whether or not I'll tank.
6.Returning to full time work when the toddler is a bit older.
7.Returning to a full load of part time work until the time for #6 comes.
1-7 can be achieved with a diagnosis of and treatment for SAI. So can we stop f*cking around and just git 'r done already?
Can I please just have my ability to live a life back? Sooner as opposed to later?
Thank you.
*The current situation is so surreal to me that I find myself questioning if I really ever had SAI and then doh! I remember I had actual blood work documenting it and I even have a copy of the lab results. I am not crazy, the doctors are!
P.S. 7 mg today!
P.P.S. If I seem all over the place, saying one thing and then another and zig zagging, it's because I am. I am all over the place right now with this. I'm not consistent. Sorry. The brain no workee and I'm really stressed.
Not to mention baking up a storm in preparation for Tday tomorrow.
Posts
Can Doctors Give Medical Advice to Friends?
4 days ago
Most brains no-likee prednisone.
ReplyDeleteDang, I wish I had that excuse - because I read through your meds and supplements list, and saw something REALLY important, that I know well (can't believe I didn't notice before now).
Generally, asthmatics should not take aspirin. It can cause severe exacerbations, or even just make asthma worse ongoing. So can NSAIDS such as ibuprofen etc. Tylenol doesn't usually cause a problem, although it does for a low percentage.
See here from the NIH:
http://www.nhlbi.nih.gov/guidelines/asthma/asthgdln.pdf
"Aspirin
The Expert Panel recommends that clinicians query adult patients who have asthma
regarding precipitation of bronchoconstriction by aspirin and other NSAIDs (Evidence C).
If patients have experienced a reaction to any of these drugs, they should be informed of
the potential for all of these drugs to precipitate severe and even fatal exacerbations.
Adult patients who have severe persistent asthma or nasal polyps should be counseled
regarding the risk of using these drugs (Evidence C). Alternatives to aspirin that usually do not cause acute bronchoconstriction in aspirin-sensitive patients include acetaminophen (7 percent cross-sensitivity) (Jenkins et al. 2004), salsalate (Settipane et al. 1995; Szczeklik et al. 1977), or the COX-2 inhibitor celecoxib (Gyllfors et al. 2003)."
My family member has the aspirin-sensitive asthma, almost died from being told to take ibuprofen for a period of time.
Even if you've taken it before, it can still be a problem (happened to him).
I'd really really suggest stopping the aspirin, and seeing if your asthma gets better. If you've had clots, and need to take it - then I'd talk to a doc obviously, and get a different blood thinner.
Oh yeah, and I too think it walks like a duck...
Even on prednisone, you can get a bit of an idea from am cortisol drawn before taking the daily dose - ideally, you stop for a day or two first, but I understand the problem.
Tracy
Aspirin is no biggie. I have never had an issue with it. It hasn't been a trigger.
ReplyDeleteI think it's one of those things either you are or aren't sensitive. Apparently it's only a problem for about 20% of asthmatics.
And I haven't taken it in a while anyway--can't remember why I stopped. Maybe b/c of the cold medicine, didn't want to mix aspirin and Tylenol or Advil.
I should take it, it has been endorsed time and again by multiple docs I've seen because of the heart disease risk from the PCOS. I took it while pregnant reading that the higher miscarriage rate with PCOS was because the blood vessels couldn't get established to support the pregnancy, they clotted up.
And yes, the first time I ever took it ever, I was terrified I was going to die from some massive asthma attack. :)
M
Ah, I see the part where you said sensitivity changed suddenly.
ReplyDeleteThat would be bad.
Well, I'm not taking it right now and haven't been real regular with it.
M
LOL may I kindly say - you're making me nuts! All these meds it says you're on, but you're not actually on them currently.
ReplyDeletej/k of course, no offense.
Tracy
No, it's irritating I know. Thankfully I barely mention the supplements to anyone outside the blog so it's not too confusing for the docs. I'm only on a few rx meds so not too much for them to keep track of.
ReplyDeleteI guess my disclaimer should state that all supplements are in variable use. Plus also that some are 'prescribed'.
Our back and forth in the comments has also highlighted for me just how difficult it is to explain my medical history too. It is going to be really hard to come up with a succinct explanation of this mess for yet another doc.
M
You know, you raise an excellent point. Because I read all the prescription meds at the side, and presumed you were on all of them right now.
ReplyDeleteThat's something I put a lot of work into, for the family member, and a few friends I helped out also - writing a good organized medical history. He saw quite a lot of docs also, and it was important to succintly present what had gone on.
Interestingly, we sure couldn't rely on the histories from referring docs, etc - I don't have one set of doctors notes that doesn't have some error in it.
Sick person that I am lol, I kind of enjoyed doing the histories - I like writing, and have enough med knowledge that I could help.
Tracy