Addison's Disease Support Group

Oh wow!! I sat here and wrote all these lab results and it doesn't even show all I wrote. Aren't we permitted to write that stuff.?
I just wanted to see what you thought Vanyel. I guess I'll just go to bed. really tired from that trip today.

Maggie,
Sorry your post didn't all come through. SOmetimes this silly sight loses mine all together. It is very frustrating. I don't blame you for just going to bed. What a drag.
Sounds like you have a lot going on. Your anemia problems and sphereocytosis should be followed by a hematologist. Do you have one? That has to add to the difficulties. Your poor body is getting hit from a bunch of different directions. It sounds like doctors have spent a lot of time chasing down the different symptoms and one specific problem here and there without ever figuring out why all these problems. May be impossible to figure out. It does seem clear that your body doesn't function in any 'normal' way. Its cases like yours when I think all these specialty doctors are more a detriment than a help. They each only look at their small piece of the puzzle when what you need is someone to put it all together and make some sense out of it, or at least figure out the best way to try and keep you going considering all the issues. I don't know where you find such a doctor these days. If I did, I would go to him/her myself. I guess that is one reason I like my present doctor - he tries to see the whole picture and look past the individual problems. And he approaches things from an integrative standpoint, not just western medicine, but alternative medicine too. Perhaps something like Mayo Clinic could figure you out. People keep telling me to go there.
Oh well. write some more when you can if you want. Maybe the folks next week will have more to offer. I would like to know more about the positive lyme titer in everyone in your area this guy was talking about. Never heard of that, but then again, I'm not from a lyme's area. Medicine is far from a simple thing. But one thing for certain, your body is way beyond the capabilities of a PA. Nothing against your PA - he has tried really hard. But he is not trained in this stuff. I hope you get better luck with the new people.

Vanyel

Hi Maggie! I had to laugh at the name of your post because I have been thinking that same thought..that I am either an endocrinologist's nightmare or dream case! Not sure which!
I too went through the Lyme's panel last year ( and with so many symptoms matching their list well, was sure that was it! And the fact that I grew up in a Lyme area and had many tick bites as a child) But only one test came back positive and the inf disease dr said that was not enough.
Like Van says, we all need a good diagnostician..like Dr House! LOL I joke but am serious too!
I am going to Duke to see an endocrinology spec in Oct and at this point really hope they can help level this out and figure this all out.
Maybe we should get a charter flight and all go as a group one day to some clinic or some place that specializes in adrenal issues and other oddities!
Keep up your search!

Maggie,

Maybe you should contact Discovery Channel's "Mystery Diagnosis". I can definately sympathize with the frustration of not having a single doc to put all the specialty issues together into one big picture. Hang in there. At least it sounds like you're finally on the right track within the medical system.

I know Vanyel! I wanted you to see my labs. You're used to looking at them in your profession. And you know more abt labs than I do and have been dealing with this yourself for so long. I just wanted your input or anyone's actually. The Dr yesterday brought up some pretty interesting facts. Questions actually. I'd written them all before the stupid post sent only so much. Darn it!Looking at where it ended it's like a sitcom or soap opera. haha " And the ACTH level was ": ( tune in again tomorrow on- - the Daily Strength ) How frustrating! I thought maybe it just didn't allow that stuff, for whatever reason. Haven't seen Maremma, hope she's ok!

Oh Jeep, My battle began at a very early age. One blow after another. I'd just written a bunch of stuff but removed it. Too much to explain. I gave up yrs ago trying to figure out what the symptoms mean. There are so many diseases that have the same ones.They just start eliminating one at a time. Then the symptoms wax and wane. How many yrs it took to get where I am. Did you notice how many of us were diag. with CFS and fibro. Even the people on the Lymes grp Did or do we have it? Or was it just AD. Or some other disease? I sometimes wonder anymore. I had all the signs of it. But it was probably the AD.or AI. Since that was diag first anyway. We're a puzzle. That's why I get so down sometimes. The Lymes Thank God!! wasn't positive. I hated to face dealing with something else. As far as the remark abt the pos titer's people have but not the Lymes disease. he said it's always the B burgdorferi that comes up +. but doing the blot tests there isn't ever the combination of enough of the IgG or the IgM.
It has on the paper that you need 2 (or more ) of the 3 sig. bands. of the M one, to be considered + for the specific antibody to the B burg. Then caution must be used in supporting a diag. of B b infec. when the sera are Western blot IgM + and West. blot IgG neg. after the initial 4 wk period from onset. it says the liklihood of a false + test result is high for these indiv. A pos. IgM test alone isn't recommended for detemining active disease in persons with illness longer than a month. There's lots more according to the FDA something abt a low predictive val for a neg result when detec. early infec. and the same but for a + result when exposure history symp, and clinical findings are not consist. with lymes. Did that make any sense. ?? he said abt seeing my labs and believes the real problem like I said is all a result of my AD. Truthfully, I don't know. The 2 + were both a little over the
ref range [

Thanks cokecpl. My sister mentioned that one time. But it's only taken abt 42 yrs maybe! lol I'm not holding my breath though. But am curious as to what this Endo will have to say. Like Vanyel said, they all do their part but don't connect the dots. Never have. For yrs everytime you see a new dr or spec. they do their history and phys. Way back when, they'd ask about all my abd scars. :) I even saw a few docs that when I'd say spleen and spherocytosis, they'd ask what it was. Usually they thought accident or something.
When I was first sent to Danville and Diag with it, the Dr was an older hematologist, who'd said if the labwork had been broken down a few steps further, they would have seen the problem. My red cells are sphere shaped. Dying off as they circulate and can't fit through smaller veins or arteries. ? I forget one or both. But they collect in the sleen enlarging it. Anemia, the works. But it had to be removed before it ruptured.
This Dr ( I'll never forget him), he was so sincere. But he'd asked if I were descended from the Amish. I thought it was funny and said i don't think so! ( couldn't pic myself in a buggy or bonnet. Couldn't bake pies worth a darn. :) I looked at my Mom shaking her head puzzled. But anyway, he had another family from this area, a valley over, and I recognized the name, that also had this disease. I believe he said we were at that time, his only cases. The whole family had it. My family siblings parents G-parents. Frat g-ma had it. Dad had a trace, I had full blown. My 1 sis had a trace. Then they thought every other gen. But passed by males. When my kids came along 1 had a trace the other and his 3 kids have it. my sister, doesn't have that disease, but Crohns. Bad from the time she was 22.
I found in a round abt way. I am descended from Amish.( Maybe that's why I was always drawn to this valley haha) But a grp left an order here and went over the mt to begin their own church. If you know amish, they devide due to disagreements often. My gr grandma's father. So, he was right. I'd better close. I've been on and off. but I noticed my last response to what Vanyel wrote wasn't all there again. Ohhhh my! I guess I write to much. Wonder if I can journal? More space maybe.

COKECPL, Addison's has already been on Mystery Diganosis.

Was it really! Thanks Bird, I'm gonna look it up later. I guess you can view past episodes. My sister saw something on tv, but I think she said it was on House. haha Even so, he's pretty cool! lol Just curious as to how they got to the diagnosis.

Hi Maggie, I am semi-okay. I am just quite overwhelmed right now and in a great deal of pain as I have a huge mountain of homework, work, my sisters wedding plans and several of my guinea pigs are not well and I have to hand feed them several times a day and medicate at several different times a day.Something has to settle down fast or I know what is coming again. UGH!!

As for the infectious disease doctor you went to see would you please PM me his name and if possible I would like to see ALL your test results the lyme test included.

Remember how I explained the testing for Lyme disease leaves much to be desired. First and formost is that the most frequently used test ONLY look for ANTIBODIES not actual lyme bacteria. As it is there are strains of lyme running around Pa they don't even check for and because it is a spirochete it strongly resembles other diseases (suchg as syphalis, mono) and can cause some doctors to say you do have lyme when you don't and you don't have it when you do!
Lyme is a very adaptable bacteria that rapidly changes form specifically to be able to hide from the immune system.It is also capable of overwhelming the immune system. (thus no more antibodies to be found or very few and have hit or miss blood work) That is why it is SO important to catch it early before it has time to "adapt", hide or overwhelm the immune system.

Hi everyone! I may be an endocrinologists dream, but I believe they are my nightmare! The appt was a bit unusual to start with. My PA didn't send any of the notes they said they were sending, or had sent. luckily I'd gotten those from the hosp admission and diag. of AD. Plus some from before and then afterwards till the Lyme test.
A young Dr came in, a resident, no problem with that. I've found sometimes the younger the more up on new things they are. She sat and went through all the stuff I'd taken, asked some questions while searching through the reports. I don't think she actually heard a word I said. I'd told her abt the first diagnosis way back, then this time. That my Dr took me off the meds for the AD, because of a test that hadn't been accurate anyway. But I'd been on prednisone off and on for breathing, asthma. Not all the time, but before the hosp last yr, I'd been on a dose and kept on 10 mg a day for awhile. I said each time I went to the hosp it was listed as a crisis. But the first Dr came in took papers with her and left. We heard them next door talking. then 2 returned, Dr Jun, was the one I had the appt with. But he said you were diag. several yrs ago, and another Endo Dr said it wasn't AD. I'd told the first Dr that my PC had stopped the meds. I haven't seen an Endo.They did a test he'd ordered at this hospital because the ins wouldn't pay for it.( that's the one I said they called everywhere to find out how to do it )after the inj. was low normal, so my PCP took my steroids away unless I got sick.
Then he asked why I'm on such a high dose the 60 mg. I said because I'd gotten sick, and they thought it was lymes.( But there has been something going around here which is maybe why I had the fever and more nauseated and achey than before). But the 2 series of antibiotics didn't help matters either.
He said 60 mg is much to high for a person. You should only increase it for 4 days, then decrease it again. And asked how long I'd been on that amt. I told him about 6 weeks.that the PA wanted me to stay on it till I saw him. he was going on abt the things they cause, and abt bones etc. I said I knew that, and have degenerative disks the whole way down, and the injections etc. he ran his fingers down my spine and hit a spot that was tender, more than the others anyway. Sent me, before I left for an xray to see if it was a compression fracture.

Anyway, he said he didn't think it was addisons, that it's adrenal insufficiency but not that. ??? The papers the dr had removed from the records were ones that had other results, like ct scans . I had said that over the yrs I'd gain wt, then lose wt. Then I think everything just gave up. He'd asked abt symptoms, which at that point i was so confused. One was asking one thing then the other would say something. They had their backs to me, and even my Mom was there, and said they had her all confused too. I left with a script for dexamethasone inj. Labs to have done up here that's fasting. then another bone scan. ?? I told them abt the bones. then I was to drop my hydrocortisone to 20 am then 10 pm. Then down to 15 am and 5 pm. I go back Jan 26th. They said 3 months, but is 4. I dropped down and am feeling weird. I guess it'll take awhile.
On the bone scan paper and the one that I had for the xray down there, it has suspect couldn't read it but ended with genic. I looked it up and i think its iantrogenic cushings. ?? none of my test results even resemble cushings.
Then today I went to pick up the prescription. The pharm asked what it was for, and I told him. he said he figured, and then asked if I knew how to do it. I told him I had no clue. They handed me the 3 scripts, 1 for a bracelet. He said they didn't even set you down and explain how, and when to give it. Let you do it to see how etc. Then I'd told him abt the visit and the cushings whatever. He said you do not have cushings. He told me last yr his father had AD, and then the cushings, He'd told me back then that i was one of the luckey ones when diag. because his dad wasn't so lucky and passed young. They didn't know what was wrong so it went untreated. Then he said go to another dr. A decent clinician would have never sent you home like that. he said to call down and ask abt it. I go to my PA Mon, so will ask him. But the Pharm said to tell the PA I need another opinion. And if I'm not satisfied with another Dr, get another, and keep going if I have to. :(
I compared the notes they kept with the ones I'd had copies of here. I'll write abt them tomorrow. I don't understand, but who am ? I took an ativan a couple hrs ago. was going through one of those crying spells. had taken my dog to the vet yest. got a call Lyme and the erlich?? were ok. he'd suspect cushings according to his swmptoms. but got a call his liver enzymes are really high, but electrolytes are ok. Put him on Denosyl. I said probably from all the yrs of phenobarb. But oh dear Lord. it was over 300. for everything and the meds. it's just been a bad day. I suppose half of this won't be included anyway. Forgive my errors. So tired