Addison's Disease Support Group

Wow Maggie,
Sorry, I was working last 2 days and never got to check the computer. I just read through all your posts and wanted to at least let you know I read them and am thinking about it all. You have a lot going on and in today's medical world, I know they are going to want you to see a different dang specialist for each different thing and no one is going to put it all together for you. That really irritates me about our system. But, that being said, from the labs and xrays you posted here is my initial impressions:
1. COPD is a chronic lung disease that anyone that smokes is going to have at some level. The exposure to the bug spray certainly set you off that time you talked about and is an obvious trigger for your lung disease. Much of what was said on the xray is consistant with COPD changes. Its hard to tell from what you posted if they saw anything that they were concerned about being a mass/tumor/cancer. I would think if they had they would have recommended a biopsy via bronchoscopy or open incision and pursued it further. COPD can cause scarring and other weirdness in the lungs that will look funny on xrays. I think it is certainly worth continued monitoring and treatment to try to prevent flare ups and to watch for cancer. But I wouldn't jump to any conclusions about cancer just yet.
2. Your basic labs sound more or less ok. Your sodium and potassium sound normal. Your proteins run a bit low - and this could be dietary as one possibility. They should check your prealbumin levels to really see if your nutrition is a problem. There are oodles of people out there with low proteins levels - can be from kidney disease, liver disease, metabolic disease. Most of us do not eat a proper diet, do not get the proteins we need and get way too much of the crap we don't need. WIth the hormone issues you have, your metabolism is no doubt not functioning optimally and my guess on the protein is it is just your metabolism not quite keeping up and isn't really anything to focus on. Your thyroid labs sound a lot like mine. Do you remember what your initial thyroid problem was? Were you too high or too low? The steroids we take effect the thyroid function quite a bit as marema said, and our labs are never going to look normal. You are converting too much T4 to T3, as I do, and my doc thinks it is because of the lack of cortisol. We got mine to correct a little bit by high doses of steroids, but it was too high and I got other bad side effects so we reduced it again. Recently we switched me from armour thyroid, which gives you T4 and T3, to synthroid which is pure T4 (synthetic). We are waiting to see if that makes a difference. I had to wonder with our TSH and T4 being consistently low if all these labs were done while you were taking hyrdrocortisone or prednisone, and I also wonder if anyone has checked your pituitary function. Has it ever been tested to see if it puts out TSH? As for the adrenal tests, your cortisol appears to run on the low side. YOu did not mention an ACTH stimulation test. I think the ACTH level you mentioned was low. Again, this makes me ask about the pituitary. Is it putting out ACTH? YOu have some adrenal function as your cortisol level at one point was low normal (which I hate because I don't think they have a clue what normal cortisol levels are). I wonder what your adrenals do with a good dose of ACTH to stimulate them.

3. Your iron levels are high. Has anyone checked you for hemochromatosis? Or other heavy metal toxicity? That can cause a lot of these problems all by itself. You have some hematology issues with your weird sphereocytes was it? and I think that would be part of the driving force of your anemia. That and the pernicious anemia. It looks like you are well treated with B12 and folate, so that is good. I would imagine there is some component of anemia of chronic disease going on as well. Hematology is not something I have learned in depth so I'm a bit out of my league there, but from your history I would expect you to be anemic and that is probably somewhat normal for you. You did not post what your actual blood counts were, but I would think if you can keep your hemoglobin (hgb) over 10 you're doing pretty good. I'm kind of guessing on that one.
4. Have you ever been checked for auto immune disease like lupus, rheumatoid arthritis, etc? You may have said at some point and if I forgot, I'm sorry. I just wonder if there is an underlying problem here driving all this stuff for you. DId you see anywhere a CRP level, ESR, RA factor, ANA, any antibody testing? There are alot more tests they do looking for auto immune problems that I can't recall off the top of my head too. The bad news is, the auto immune diseases are probably even harder to pin down than endocrine problems so all these labs may not help at all.

I can't think of anything else to say off the top of my head here tonight. I will mull it over some more and if I think of anything I'll be sure to post and let you know. Do be careful trying to taper down the steroids. Your body needs them and if you notice a big difference in how you feel when you taper down, you're probably going too fast. I'm glad your PA told you to increase again. Very rarely someone is resistant to cortisol/hydrocortisone and if you happen to be one of those, you'd need higher doses to manage. Are you still gaining weight? How is your BP? Anyway, I don't know if any of that helps at all. I hope somewhere in all this you find some peace at times and have some moments of energy. I know I have become so focused on my body's problems it consumes my time. Try to get out of your head and just go do something you enjoy and let it rest for a time. Hang in there.

Vanyel

PS: THe CEA tumor marker or whatever they call it test is not specific and from what I remember is a measure of increased cellular activity like when a tumor is growing - in your case it could be from any number of things including your strange blood cells from the hereditary sphereocytosis I would think. I would think if there was a tumor somewhere it would be much higher. At first glance I would not be inclined to be overly worried about it.

The prednisone you have taken off and on for your resp problems may have affected your adrenal function - it will suppress adrenal function when you are taking it. It is possible that your adrenals were/are weak and when they are suppressed by the prednisone they don't bounce back afterward. With repeated use over time, adrenal fatigue has become adrenal insufficiency and you now need to take steroid to maintain normalcy. This is not Addison's disease - it is more of a secondary problem from having taken steroids. They believe this is my problem as well. My theory is that my adrenals were only functioning marginally at best to begin with, and the prednisone suppressed what little they did and they cannot bounce back now. I would still like to see what your ACTH stimulation test was like and your pituitary function.

Lastly, cortisol is the hormone the adrenal glands make. The replacement for cortisol is hydrocortisone. Other steroids that they use to replace cortisol include prednisone, dexamethasone, solu medrol, solu cortef, and more. THey are slightly different chemically, but basically all provide 'cortisol' to the body. THe injection you got for emergencies should have been explained better to you, and you should have been taught how to give it to yourself, or have someone give it to you. That is inexcusable. And you need to know the dose. It kind of sounds like it might be dexamethasone from the concentration you said, but I don't know. I hope they got that figured out for you. I have solu medrol. Anyway, if you have questions about that, let me know - I might be able to help with that.

Vanyel

Oh my gosh!! I spent an hour writing again. Ohhhh! Lost it all!!! Sorry I haven't gotten back to you with some more info and answers. I had a call from the Endo dr saying the nurse told him I called abt my dosage of meds. ?? It had been a week ago, but I'm glad he called. I'd told him I felt worse everyday. He said what was I taking, told him, and he said it needed tapered slower. And only to go down to the 20/10. Forget the 15/5 when I said that's what the other dr said. He thought the labs I was having done here were the cortisol compound??. No haven't had the ACTH unless they gave to me IV in the hospital, which I doubt they did. I can't figure why that and everything is so low. The B12 I usually would have labs drawn as I left the Dr office, or the day later. Steve said that's probably why it's high and he didn't worry abt it. The iron he'd told me to start several mnths ago.??
I'd been looking on line different times abt AD and AI had some articles I wanted to print. At the bottom of a couple it had other links. I went to the NADF website. In a tab that said tools or something like that, but it had a letter to print out somwhat like cokecpl had said she had. Then something for carrying a syringe with you when on buses, plains, etc. The importance of it. How to give the injections, when they were necessary. The differences in each med and how they work, how long it takes and lasts. The mgs of one = the mgs of another. Really interesting. Oh boy, getting those goofy pains I always got right in the sides of my back, like over the kidneys. I used to get them all the time, sitting doing this, or standing doing dishes. burns and pounds. I have to get off for now. Plus need to be at the hosp in the am for that bone scan. fasting lipid profile and glucose. ?? So, I'll get back on tomorrow. I found some really interesting articles on that site also.
According to one, the adrenal insuff. that's caused by the use of steroids and sudden withdrawal. I never had a sudden with drawal after being on a high dose for a long while. Actually though, when I was in the hosp and diagnsed, I was getting solumedrol i think for the pneumonia, plus my prednisone 10 mg I think. Yet the ACTH and cortisol were low?? Oh well, I'll think abt it later. Missed survivor!! Darn it. Also was a link to a study on AI in MD at NIH and one in canada. But just the forms alone to print out are great! Place for the Dr to fill it in.
Hope all's well. I have to read all the posts over again. Take care! I hope Maremmea, Jeep, and cokecpl. That's how I lost all the last post. went to see for sure how to spell cokecpl and lost it.
http://www.nadf.us Then there's going to be a handbook out on the site before long. Well, I hope all are having a good night! haven't talked to anyone. Got the med back up and am beginning to get on my feet again. I actually did my laundry. Have to carry it over to the laundry here. No washers in these apts. Boy I miss that.