Went down to 10mg. Which means I took a nap. After spending most of the day on the couch. The toddler snuggled with me most of the day.
I feel good. Awake. Conscious. Not lost in the murky fog of mental malfunction. I don't even want to tell you how bad my driving was before I started increasing the prednisone. More near miss accidents than I have had in my entire driving career compressed into a period of just a few days kind of bad.
The back stuff is weird still though, but now more in the kidneys. Like things are swollen or inflamed still. I wish it would go away. Or get bad enough to communicate properly with doctors via lab results. Either way, but could we please stop camping in limbo?
Contemplating the taper to come as the birth control pills run out tonight and that always seems to make me feel bad adrenally. An adrenal patient told me they read in a textbook that menstrual cycles = low cortisol which would really explain a lot. I told the endo back in August that things as simple as my period were stressing my body out.
I failed to impress the endo with that tidbit.
However, more than once, to the point of being a pattern, stress dosing needs have coincided with my cycle. As have the asthma and viral infections. It all likes to hit at the same time.
Conveniently the toddler seems to have boogies. So the monthly gauntlet should reconvene any minute now. Just when I need to drop the steroid dose.
I also got a chest x-ray today, ordered by the pcp because...you know, I'm not actually sure why. I think the idea was to get a better image of my lungs than when I was so ill as I did have some airway collapse in March that made for a less than stellar view of my innards.
I wonder if they will be able to see the tumor or not? It was originally discovered via contrast CT.
I have been reading about Hypercalcemia, Hyperparathryoidism, Pheochromocytoma, Sarcoidosis and Vitamin D Hypersensitivity.
Just because.
Anything is possible, but not always likely.
I stopped taking Vitamin D just in case. You never know. Thanks to comments from Tracy that made me go back over all the vitamins with a critical eye.
Although I am not taking near enough D to have problems with it unless something else has gone wrong in my body first, but if there is a base I can cover, I will do so. I thought it was kind of interesting how Vitamin D Hypersensitivity intersected with Sarcoidosis, Hypercalcemia, and Hyperparathyrodism. Didn't think there would be a common factor.
I also stopped calcium supplements for the time being.
17 days until the next doc appointment. I need to work on lowering my expectations dramatically between now and then. For some reason I am hopeful and I know better than to think there will be any answers or help.
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Can Doctors Give Medical Advice to Friends?
4 days ago
This is the first negative I've heard about Vitamin D - thanks for sharing. I'm going to have to look into it further as I've been double dosing on it lately.
ReplyDeleteWhy do we so often get our hopes up, even when experience tells us that it's unlikely we will get real answers? All I know is I do it too, even though I should know way better. I had a blood draw last week, and an MRI coming up on Friday -- but it's hard not to hope that this, 3.5 years into this mystery journey, I'll get a real answer.
ReplyDeleteI'm glad you had a better day, and hope you have many more even better ones.
Medical mysteries are wonderful on TV, not so much when it's you or your family member. Been there, done that, got the t-shirt. And the mysteries aren't all solved for us yet. Sometimes, medical science just doesn't have the answers - have to wait for a disease to fully reveal itself. The waiting is not fun.
ReplyDeletePOP - thirdhand from a doctor, not anything I know anything about - they say some medications for polycystic ovaries can really make asthma worse. I don't know any more than that - but might be worth a bit of research.
Tracy
@ Penelope: I doubt you are overdosing. You would have to be taking mega doses. And studies have been done to test toxicity of very high doses with no bad effect, so it would be rare. However, if something is already malfunctioning supplements could make it worse.
ReplyDeleteTypically I skip all my vitamins on a regular basis as a way to avoid inadvertent overdosing. So if I've been sick and take more D, once I'm better I stop taking it for a few days.
@ Aviva: Hope your MRI goes well. Hope is a four letter word.
@Tracy: Pheo seems unlikely but not all my symptoms make it onto the blog, the symptoms are bigger than this blog and not everything gets on camera. So I would say Pheo is unlikely but maybe should be tested for, know what I mean?
I am beginning to think that maybe this itty bitty lung tumor is more significant than anyone ever thought.
You know, I get weird side effects from PCOS meds and thus can't take them. Not sure how they trigger asthma,but for once, it is not something I have to worry about!
And yes, I hate the waiting game. Waiting for my body to get sick enough that doctors can't ignore it anymore and can, in fact, get meaningful lab results. I just pray I'm not stuck in this limbo for years and years. This is very debilitating and I will not be able to hold down a full time job if I things continue in the current vein.
When I pick my daughter up from daycare, I have to sit down while I put on her coat. I can't even stand. I can't have a life or a career when I'm like this.
M
@ Aviva: Hmmm. I don't like how my response to you came off, it was unintentionally sarcastic, harshly so. I'm sorry.
ReplyDeleteI was not connecting the Hope for the MRI with my next sentence at all.
Anyway, may the MRI reveal answers. No four letter words in there at all!
M
@POP - pheos are exceedingly rare. They don't generally screen for them, unless there's really symptoms that point towards that. Typically, people have clinical signs of sympathetic activation - sudden attacks of REALLY high blood pressure, sweating like crazy, feeling like panic attacks. Not just regular high blood pressure. When they thought my family memeber had a pheo, he had BPs of like 220/110. Usually, pheos are on only one adrenal, not bilateral (both). Never say never of course, but typically. imo, unless you have a lot of symptoms that indicate a pheo, I think that one is likely to be something that you don't need to worry about.
ReplyDeleteI wonder also about the lung growth. Why is it being allowed to just sit there? Some tumors can secrete things that cause all sorts of effects.
One thought I had, may not be your thing though. But in your place, I would try to discontinue as many things as possible, that could even remotely cause/confuse/mask anything. I'd probably discontinue all supplements (unless prescribed to treat a diagnosed insufficiency). You already seem to have cut back on prescribed meds. The reason I would do that is not because I think supplements are bad, or even necessarily causing anything. But, I don't think they're enough to be fixing what's wrong, and they're just another layer of complexity. When doctors can't figure things out, we found it is best to remove as many confounding factors as possible. You could always add them back later.
If there is an insufficiency, that you're successfully treating with the supplements, then it isn't visible and doctors don't know what it is and might be missing a diagnostic clue. So short of falling over (more) you might want to remove anything that can mask what's going on.
Also, doctors tend to not like to see a bunch of supplements as stuff - may contribute to them seeing you as a nutty patient. I'm not saying that's right, but I think it happens.
Didn't you say there's an outstanding am cortisol test order? Have you had that done? I am really curious to see what it will show.
Tracy
I can't do the cortisol test now because I am on steroids. I would have to have a challenge test or have them switch the steroids or just abusively require me to cold turkey wean. It's no longer a simple blood test so I have to wait until someone decides how they want to test.
ReplyDeleteI think supplements put you on the nutty patient radar too but US science is backwards on this. Europe is much better about supplements since, as I understand it, their drug research does not focus solely on profit. So they do the studies regardless of profit potential--that's how I found Inositol for PCOS. This is also why fish oil is a prescription medication in Europe.
I don't know about the value of eliminating vitamins, these are things I have always taken, even before problems started. Most are water soluble. I have checked for drug interactions and all that too. Previous blood work prior to this mess included the vitamins and was fine so?????
But it's no skin off my nose to stop D and Ca for a while either just to be paranoid. So I'll try it.
If I stop anything else it will have to be closer to blood work, I need the Mag and K for the muscle cramps right now.
M
Well, maybe stopping that stuff isn't a good idea, if you're really having problems. I don't know.
ReplyDeleteBut... muscle cramps? Why on earth I wonder? It really sounds like things are out of balance though. I hope they check levels of this stuff when they do bloods, you shouldn't really need to supplement that much.
The european drug companies are just as profit oriented - they just don't make as much profit.
Maybe that idea of mine wasn't a good one. But if you really need all those supplements, and eat a normal diet, something is out of whack.
Tracy
Low carb messes up mag and K. As Kaplooey said, she's got permanent K issues, which is, I suspect, similar for me.
ReplyDeleteHey Kaplooey Mom, if you read this, how did you get diagnosed with the potassium issue?
However, the cramps I'm having now are new. Muscle cramps are listed under the adrenal symptom column. How common it is, I don't know.
I had them the last time I had SAI, prednisone can interfere with how calcium is used in muscle tissue and cause cramps that way (relying on vague memory of something I read 10 years ago).
So we would have to sort out, is it the prednisone, is it actually from an adrenal problems or due to a different cause?
I don't know the answer for sure but one of my theories...since prednisone interferes with nutrient absorption and I took it for so long, 15 years more on than off while growing, I would not be surprised if I have permanent issues, in a variety of ways, due to the steroids.
M
http://www.globalrph.com/steroid.cgi
ReplyDeleteI think you should not be tapering, it just isn't working for you. Have the doctors talked about putting you on hydrocortisone. I understand that HC lasts longer in your system that Pred does. I have been taking HC for 10 years now, but I do have secondary Addison's. I normally take 20-25 mg daily, in divided doses. (10/10/5) Do you divide your pred dose up during the day, or do you take them just once? I do a AM cortisol test every 6 months or so. I am usually off the HC for only 18 hours or so, before they draw blood. Would your doc consider am cortisol test? I feel so bad for you, this adrenal shit is ridiculous. My needs change and I need my body to tell me how much HC to take. I have been as low as 20mg daily for about year, to 35mg for a while.
I need to stress dose occasionally but not too often. (I hope this isn't too confusion, I'm kinda loopy right now)
mo
I have low pottasium often. It is an awful feeling. Fatigue like you never imagined. I need to eat bananas, dried apricots, and lots of raisens or I can tank pretty easy. I have Crohns and when I get diahrea my K can drop fast.
ReplyDelete