|
Post by verbal0rchid on Mar 1, 2009 20:20:57 GMT -5
*flops down exhausted* Ya'll know that feeling, right? lol (bit of background first) my most recent labs: forums.realthyroidhelp.com/viewtopic.php?f=7&t=10670this is the update (2nd or 3rd page) from the last dr visit: forums.realthyroidhelp.com/viewtopic.php?f=2&t=11292Please forgive me in advance for seeming totally confusing and ignorant. I'm struggling to stay awake to write this but I am desperately in need of advice and support ya'll. As of the last post I made on RTH, it has gotten far worse. I've got the zaps, shakes, fatigue that seems 10x worse than it ever was before, the brain fog, and my headaches are back full force, the slightest sound sends me reeling like the shriek of harpies going off inside my head. I hurt so bad I feel lucky if I make it out of bed, and grope wildly for the Tramadol to help with the pain. That scares me a little. I really don't want to get hooked on pain meds. (yikes) I don't take it more than the 2x a day it says on the bottle but still, I don't need to add dependency to it on top of the other crap. I tried calling my doc thurs and friday but they closed at 12:30 friday and no one ever called me back to tell me how much Kenalog the doc gave me on last Monday. Just one week ago, and I am back to the hormonal dungeon and it feels worse than I was before. I plan to call tomorrow AND email the doc and beg for the info on the dosage so I at least know what that might mean. I will post that as soon as I get it. I knew I needed the ACTH and a.m. cortisol test done but when the doc offered me the injection of Kenalog Monday I asked him and he said he only wanted to do that IF the Kenalog had no apparent effect on me. Well, it did have an effect, oh boy did it. In retrospect I should have held out for the test, or ordered it online myself, but I was so happy someone finally acted like he knew what he was talking about, I let him give me the shot. I've tried to read the info on primary and secondary adrenal fatigue/insufficiency and I feel completely dumb, this still just doesn't make much sense to me. I read the one thread on symptoms of insufficiency but I don't know from that list if that's what's really going on with me. Maybe one or two symptoms I can say I have but the majority I don't think I do. Namely the weight loss, fevers, etc. I have a low temp on avg, and ha! @ weight loss, lol. All I was really able to figure out is that one or the other means permanent treatment, and the other temporary. Will the ACTH and am cortisol really tell me which I have? Is there some other test I need to find that out also? I'm still taking the supplements, D3, calcium, magnesium, fish oil, and my asthma med, albuterol, singulair, zyrtec, Aleve, and Tramadol. Doc said if it seemed I did well on Kenalog he would Rx HC for me in about a week. Well tomorrow is a week, and my dilemma is now: Do I call and ask for the HC scrip? Do I ask for the ACTH and a.m. cortisol? How long do I wait for that now since I've had the K-shot? What I've read here and on RTH, is that any supp cortisol should be completely out of your system for two weeks before doing the test or the results will be skewed. Which leads to the added question: Can I really make it two weeks feeling like this? I am facing a cross country drive with a 2 yr old daughter in about a month. I'm moving to Seattle. I know someone recommended the tahoma clinic out there once I'm moved, but I need to GET there first. And driving 3000 miles with a 2 yr old by myself..... *shudder* Please, I need advice. I think I know what I need to do, wait the two weeks and have the acth test run with morning cortisol. And honestly it would be better for me to do that waiting here where there is hubby and his father who can watch BB when i'm crashing and trying to wait this out. The desperate part of me wants to beg the doc for HC scrip immediately so I can get back to the string of hope I felt last Tuesday after the shot. I need encouragement if I really am going to make it through the next few weeks. Advice and encouragement, please. thanks so so much, Dallas.
|
|
Wanda
New Member
Posts: 23
|
Post by Wanda on Mar 1, 2009 21:31:39 GMT -5
Sorry you are feeling lousy Dallas. If only the doctor would have givin you the ACTH stim test you would have an answer. I'm not familiar with Kenalog, but assume it is something that would interfer with the Test. Too tires to search! The ACTH test is the important one to tell you if you have addisons/adrenal insufficiency. Needs to be done by 8am.
Have you tried drinking bouillon or sea salt 3 times a day? Best not to take HC until you have the test. Are you monitoring your blood pressure? Don't hesitate to go to the ER.
Wanda
|
|
|
Post by verbal0rchid on Mar 2, 2009 11:04:56 GMT -5
well I gotta hand it to 'em. The doc's office is closed because of the ridiculous snow we've gotten sideswiped by down here, but the doc himself wrote me back in email this morning. I emailed him last night, and he responded to each point in my email with different colored text to pinpoint what he was responding to.
Below is the email along with his response (i have highlighted his words as he did in different colored text):
Hi Dr. I tried to reach you Thursday and Friday but the office closed early I found out so no one called me back. I am sorry about that. We close at 5 M-Th, and 12 on Friday, but either myself, or one of my assistants answer the phone 24/7. I wanted to ask what dose you gave me in the Kenalog injection, because I thought it would last a few weeks, more than 3 days at the very least. Is there any possible way you can tell me please at some point tomorrow? I'd realllllllllly appreciate it! I will ask Lora to contact you about the meds. Usually it is 40mg, and in some people it will last 3-4 weeks, but in some folks with BAD pain, it may not last but 3-4 days.
This is what I've been dealing with since Wed night/Thursday till right now. I've got the zaps, shakes, fatigue that seems 10x worse than it ever was before, the brain fog, and my headaches are back full force, the slightest sound sends me reeling like the shriek of harpies going off inside my head. I hurt so bad I feel lucky if I make it out of bed, and grope wildly for the Tramadol to help with the pain. That scares me a little. I really don't want to get hooked on pain meds. (yikes) I don't take it more than the 2x a day it says on the bottle but still, I don't need to add dependency to it on top of the other crap. I think at this point I really need to have the ACTH Stim test done with the morning cortisol. I am happy to help you get it done either place. I will forward a copy of this to Jackie, our lab director, and she can help you arrange here or via Zava . Can I have that drawn at your office or should I order it from ZRT online? My only concern with that is they seem to want it done on a specific day of my menstrual cycle and there is no way to predict that. I've not had a regular monthly cycle in my entire life. I remember last year, Dr. X had to give me something to make me have a period because I hadn't had one before that in something like 7 months. Yikes! How long should I wait to make sure the Kenalog is completely out of my system before I take the ACTH Stim/cortisol test? Any idea? I would wait at least 2 weeks, and 4 is preferable
Sorry to be such an annoyance, but I so deeply appreciate the time you take to talk with me. I hope you had a good weekend, and didn't get too soggy with all this rain. I think we all got soggy...and then frozen
Take care! Dallas.
|
|
|
Post by justaustin on Mar 4, 2009 9:54:28 GMT -5
Hi Dallas,
I'm not familiar with Kenalog. Your symptoms do sound like low cortisol. Again, you need your adrenals better supported before increasing thyroid hormone replacment (if taking).
Arranging ACTH stim...will need to be done at outpatient lab of hospital or individual doc office. Doc will call in script for synthetic ACTH to pharmacy. You will need to pay and pick up synthetic ACTH and bring to lab or doc office. Doc will call lab to arrange test. Need to clarify if it's high dose or low dose ACTH stim. You need to be sure that baseline ACTH and cortisol is done prior to injection. Post injection cortisol levels should then be drawn at 30 and 60mins. Tell the lab and doc that you will not pay for the stim test if protocol isn't followed!! IE they are late in drawn post injection level and/or baseline ACTH is not drawn.
If they order low dose ACTH stim...A low dose ACTH stim is 1mcg. The synthetic ACTH usually comes in 250mcg/vial(high dose). The doc or nurse with lab will reconstitute the synthetic ACTH(usually a powder). If low dose, the doc or nurse should withdraw the amount of liquid of ACTH after reconstituting. For example, if total volume of reconstituted ACTH when withdrawn in syringe is 5ml. The doc/nurse should withdraw 5ml from a 250ml bag of Normal saline IV fluid then inject the 5ml reconstituted ACTH into the bag. This will provide a concentration of 1mcg per 1ml. The doc/nurse will just need to inject you with only 1ml for low dose ACTH stim.
As you can see, if doc doesn't know what they are doing or ordering and if the patient doesn't know what should be done, there is a margin for error.
That said, I'd get baseline morning ACTH and morning cortisol level ASAP. DO NOT SMOKE PRIOR TO GETTING THIS DONE!! If doc wont do it, you need to get done via econolabs.com. These levels will better tell you/us if you are primary vs. secondary adrenal insufficient. Given whiplash/auto accident, it's likey secondary.
I think the docs have been jerking around too long with your health. JMHO. Plus, if Kenalog is that high of steroid, it can contribute to secondary AI or make worse because you receive it and then nothing else. Cold turkey. Set you up for crisis.
Laurie
|
|
|
Post by verbal0rchid on Mar 5, 2009 1:32:50 GMT -5
Laurie you're awesome. Thanks! I found out I got 40 mg of Kenalog which converts to approximately 200 mg of HC. And yes, I crashed bad So the ACTH/ morning cortisol is a completely separate test from the Stim test, yes? Just want to make sure I am ordering the right set. I had looked on econolabs.com but could only find ACTH and morning cortisol sold separately. Are these the same - serum tests for both even though I'm purchasing separately? When they emailed me back after inquiring, there is a lab I can go to about 30 minutes away, not too bad. My doc is agreeing to do the test but there is a time constraint involved. He is so overbooked it's unbelievable. The man does not hve an open appointment until september! I had to get on a walk in basis after the prior doc took off for parts unknown. You mentioned my car accident. I'd think it's possible. Thing is I have been exhibiting signs of this my whole life almost. If it takes trauma to the head there are a few to pick from. Age 12, solid whack across the bridge of my nose full force with a metal softball bat. In my 20's (former marriage) ex hubby pounded my head into the floor by holding onto the back of my hair, along with a solid punch in the nose. No one ever checked either of those because there was no bleeding, just swelling. Then in 07 the car accident where I had pretty severe whiplash. So it's possible, yes. I don't know of any way to find out for sure though.
|
|
|
Post by justaustin on Mar 5, 2009 7:10:06 GMT -5
"So the ACTH/ morning cortisol is a completely separate test from the Stim test, yes? Just want to make sure I am ordering the right set."
That is correct. IF you can't manage to get the ACTH STIM (see above post on directions), then you can have baseline Morning ACTH and Morning Cortisol levels tested. Two tests. Yes it's the cheapest via econolabs. You /we need to see how much ACTH and cortisol your body is producing. The morning sample will give you/us a better idea if this is primary vs. seconday. I'm betting secondary.
If the sun,moon and stars line up and you are able to have ACTH STIM, they need to draw and measure both your ACTH and cortisol levels prior to injection(most endos don't measure ACTH,BTW). Thats why I recommended telling the doc/lab that you will not pay if protocol isn't followed.....
Any or all of those incidents could have resulted in your endocrine dysfunction. The nasal wack with baseball bat. OUCH. You do realize that the pit is located near the nose? Some docs remove pit tumors via transphenoid approach. They go through the nose?.....
Sheesh, Laurie
|
|
|
Post by verbal0rchid on Mar 5, 2009 14:21:19 GMT -5
yeah, that was fun. The kid didn't see me though, his back was to me. I skirted wide toward the wall but he flung the bat out arm's length and high, caught me right across the bridge, owww.
|
|
|
Post by verbal0rchid on Mar 12, 2009 13:44:18 GMT -5
copying here from RTH (easier) forums.realthyroidhelp.com/viewtopic.php?f=2&t=11512by verbal0rchid on Wed Mar 11, 2009 1:47 pm Since I know the scale at the doc's office always reads about 4 lbs more than my scale at home, I stopped by today to see if I could use theirs...and when my home scale read 196, theirs invariably read 200...ok. So at home this morning I weighed in at 188.6 w/o clothes, 190.2 with. At the doc's? 191.6 with clothes and shoes! Given average there was 200 for me, that's almost 9 lbs in two weeks (since the kenalog shot). Sooooo.....since i WAS there already *cough* - would it be possible to see if the lab manager was around? *all syrupy sweet* - I'd met the lady on my last visit and have spoken with her several times on the phone. She JUST so happened to be finishing up with a patient and came up front. yes the doc got with her about scheduling the ACTH Stim, but the problem she said, was they did not have a kit to do it, and did not have experience with it, she'd never done one at their office before. She asked the Doc if he knew where to get the kit and if they did such a test in office. He did not get back with her yet. BUT - I CAN have the baseline ACTH and morning cortisol done - and I go in tomorrow at 8:30 am. 12 hour fasting, so nothing but water after 8 pm tonight, ....no smoking, no gum, nothing but water. groannnnnnnnnnn It's not the Stim, but it IS the baseline that I needed. BEST news I've gotten all week!! *dances* (copied from this afternoon) by verbal0rchid on Thu Mar 12, 2009 12:58 pm So after turning into super-monster last night, not eating, no sweet tea, no smokes!!!!! - I made it in to the doc's this morning for my blood draw. While I was there I asked Jackie if there was any possible way to also draw for Renin, Aldosterone, Sodium and Potassium - sure, no problem. SO! Got that done also. They said according to Labcorp (she called and asked) the ACTH results should take about two days to process (and yes, with morning cortisol). Since I'd had a raging migraine for the past three days, Jackie had one of the MA's go ask the doc if I could have a shot - and I asked about any possibility of getting a rx sometime soon. They put me in a room immediately and the girl was so nice, I mentioned that I was having trouble since by then I had not eaten a thing in 13 hours, she went and got a pack of crackers she kept in her locker for me (how nice was that?) and some water.......then the doc himself came in - and I did not have any appointment to see him! I told him about the dreaded uncle's visit, everything that happened last weekend, the migraine. He said he would still do the Stim test if I wanted but at this point he was more inclined to go ahead and treat based on symptoms. This was also because I told him about the four head injuries I've had since childhood. He told me even if I'm not panhypopit, he thinks i certainly have SOME pituitary damage going on here. He gave me another injection of 40 mg Kenalog, along with Toradol for the migraine pain, and a Rx for a Pred pack, 12 days. He said on day 10 I am to call the office or email him directly and he will have a Rx for HC tablets waiting for me to come pick up. He also said if I have ANY unbearable stress, for any reason, (given the dreaded uncle's being here or whatever) - I am to call and come into the office and he will squeeze me in somehow. He said the Prednisone would help avoid a possible crash as the Kenalog wears off, and considers it a stress dose (he calls it Pulse dosing?). He said the rx for HC will be for maintenance but this should help me get through the next couple of weeks - the added stress and worry about the "visit"...... I asked him about Wilson's book and how it talked about not taking more than 20 mg of HC hype, he said he has one patient with Addison's who does very well on a low dose of HC and stress doses as needed but he takes it on a case by case basis. He said if it's looking like a low dose of HC is not going to do it for me, he is amenable to raising it higher. When I was leaving he walked up to the desk with me and told the lady to FIND and MAKE an appointment for me in one month, and she did! Within an hour the migraine was gone and has not come back, nary a hint of sinus pain and after 5 hours I've used my inhaler once. I picked up the Pred pack, for $4 thank you very much Walmart, lol. I'll start taking it tomorrow morning. Is this for real? Is this a bunch of smoke and hooey or is this on the level? I mean......this is good news, right? I sure hope so. It certainly 'feels' like good news. I guess we'll know more Monday or Tuesday when results are in.
|
|