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Old 06-24-2008, 07:10 PM   #1
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Feel terrible and endo can't see me till Aug. 6th

My primary referred me to see an endo because of possible Addisons based on symptoms but they can't see me till Aug. 6th and I just feel worse daily, it seems. My main symptoms are total fatigue, weakness to the point where I have to sit just to prepare lunch for my two young kids, almost constant nausea, weight loss, low blood pressure (today it was 90/55) and now muscle pain in my stomach and legs, and joint pain. I also has a scary incident last night where I pushed myself to stay up late for this baby shower I am planning and didn't get to bed until about 12:00am and as I was in bed falling asleep I suddenly felt so "out of it" and disoriented that it took me a few seconds to even know that I was laying in my bed in my room. It was so scary, nothing like that has ever happened to me before, I was afraid to fall asleep after that because I thought something bad was going on, but I eventually ended up falling asleep and sleeping fine, but waking up so sore in my joints (the joint pain just recently started, and I just developed two mouth sores, I never get those.) I don't know what to make of this..could it really be Addisons? My husband is worried and wants me to pay out of pocked to see another endo sooner, but it will cost us $275.00 for the hour long consult, and he wouldn't even be able to run any tests so I don't think it would be worth it. What do you think I should do?

 
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Old 06-24-2008, 08:23 PM   #2
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Re: Feel terrible and endo can't see me till Aug. 6th

If you just go to your endo's office and start crying then they might fit you in. Just kidding.

Seriously you can call and tell them that your afraid to wait. Express to them your severity. Also they have cancelations and no shows all of the time. Call them frequently. The nurse at my endo's office said that if I were to come sit and wait for awhile then someone will eventualy not show for an appointment. It really depends on how desperate you are.

 
Old 06-25-2008, 06:09 AM   #3
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Re: Feel terrible and endo can't see me till Aug. 6th

make sure you know the symptoms of an addisonian crisis and go to the hospital if you have one! I should have gone to the ER sooner, but waited until I passed out - not fun- luckily i was not alone.

 
Old 06-25-2008, 09:38 AM   #4
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Re: Feel terrible and endo can't see me till Aug. 6th

Your symptoms are exactly what I had (not so much the mental confusion but that did happen in a crisis). I couldn't figure out why my heart was beating so fast and I was always exhausted, no appetite, very dark face and my weight just kept coming off. I was skinny to start with and then I looked really bad. So since the dr. didn't know what was wrong, I was referred to a cardiologist and afer a couple months of testing and heart monitors, they didn't know what was wrong. They could tell my heart was beating rapidly but didn't know why. That was when I really started to get sick. I could now longer stand for longer than a few seconds and was so light headed and dizzy that I couldn't even function. I called the cardiologist and cried because know one could figure out what was wrong. They actually ordered the 24 hour urine test and when those results came back, they immediately scheduled me with an endocrinologist. I got in two days later and he almost admitted me to the hospital. He gave me large doses of steriods and within a day I felt just like new. I was so glad to pretty much have my life back.

So..... bottom line, call and tell them the severity of your symptoms and hopefully they will get you in. You need attention soon.

Take care,
Carol

 
Old 06-25-2008, 11:53 AM   #5
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Re: Feel terrible and endo can't see me till Aug. 6th

Thank you all for your advice, this is just so frustrating. I felt so tired and weak yesterday and tried to rest as much as I could (I have a 2.5 year old and a 14 month old, so its hard to rest) but after dinner my daughter really wanted to go for a walk so I thought maybe it would help..boy was I wrong. We only walked one block to the nearby coffee shop and by the time I got there I thought for sure I was going to pass out. I felt like I was going to throw up and have diarrhea at the same time, if that is even possible, so I rushed to the restroom where I just sat and eventually felt well enough to stand and I splashed cold water on my face. I almost had to have my husband run home to get the car, but we ended up walking back slowly. It was horrible. I called the endo today to try to get in sooner, but they were of no help, so I called my insurance company to try to get an auth to see another endo but only 2 other endos in the area accept our insurance. I called one and the next available was at the end of August, but the other one had an opening in mid July so the receptionist said just to call my primary and ask them to send her the auth and then she would schedule me. Well when I spoke with the person who handles authorizations at my primary's office, she basically blew me off and said if the doctor thought I needed to see the endo sooner, he would have put a rush on the auth, but since he didn't I just needed to wait until my Aug. 6th appointment. She actually said "its only about 5 weeks away, I don't see why you can't just wait" and I tried to explain to her that in the past week I have gone from feeling tired but generally okay to feeling horrible, and I did not want to wait 5 weeks to be seen and put my health at risk when I could be seen and treated sooner. She said she could not do the authorization to the other endo, just to wait till August and hung up. I seriously feel like my hands are tied and its scary because while my husband works, I am home with my two kids..what if something were to happen to me when, who would be able to call a doctor? So sorry for the huge vent, I am just so frustrated and don't feel well. Today my whole body just aches, my arms, legs, hips, back...is that even a symptom?

 
Old 06-25-2008, 05:10 PM   #6
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Re: Feel terrible and endo can't see me till Aug. 6th

Don't stress! stress will make your symptoms worse. It's sad how insensitive people can be. When I don't get the answer I wan't the first time I call again on another shift and pretend like this is my first call. Be really sweet. Ask questions like, why? It might put them on the spot and they are not going to tell you that it's because they are lazy. Did you ask them about cancellations and no shows?

Also, If it is your addrenal glands that are faulty then there are ways to temporarily boost them. Try licorice. If it is you thyroid then you can try kelp. But, don't use too much because that will put stress on the organ and can make you worse. Try just a little only when you absolutely need it.

 
Old 06-25-2008, 05:17 PM   #7
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Re: Feel terrible and endo can't see me till Aug. 6th

Oh I forgot to mention, Don't push yourself. If your cortisol is low (cortisol is the addrenal hormone) then you need to savor it. Lay down as much as possible. Sleep as much as possible. And don't stress. If the kids make a mess of the house then let your husband clean. Trust me, this routine will make a huge difference in how you feel.

 
Old 06-25-2008, 05:24 PM   #8
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Re: Feel terrible and endo can't see me till Aug. 6th

another thing that will help if you have addisons is eating salt while you want to see the endo. with addison's your body can't hold onto sodium, so your electrolytes get all out of balance.

i had to wait a few days to see the endo too and she told me to eat lots of salt in the meantime (since she basically knew i had addison's by talking over the phone). pickles, pretzels, and vitamin water with salt dissolved in it made me feel a lot better - got rid of nausea, vomiting, and dizziness almost entirely.

i find it helps also to talk to the nurse at my regular doctor's when i need some thing rather than the receptionist. she is much more understanding and willing to pull some strings since she knows me a bit.

yes, aches are a symptom. so is everything else you've described.

if you feel really awful,don't be afraid to go to the ER. they can at least make you feel temporarily better with an IV (i went to emergency a few times before getting diagnosed - they missed my illness but at least the saline made me feel better for a few hours!)

 
Old 06-25-2008, 08:40 PM   #9
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Re: Feel terrible and endo can't see me till Aug. 6th

Have your GP order tests for thyroid, T3, T4, cortisol AM/PM, 24hour urine cortisol, prolactin, IGF-1, and DHEAS. That way the blood tests will be done. Then go see the $250 endo with the blood tests in hand; that's what the other doc is going to do anyway.

 
Old 06-25-2008, 10:59 PM   #10
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Re: Feel terrible and endo can't see me till Aug. 6th

Well this is just not getting any easier. My husband and I went in this afternoon to speak to the PA who ordered the first cortisol test (they only did an am) and who works under the dr who referred me to the endo. We thought if she would at least order the blood tests that they could be done and that way if anything came back unusual, the endo would most likely be able to schedule me in any sooner. Well she wouldn't even come out of her office to see us, she spoke through the not so nice receptionist and said that they cannot order those tests and that is why they referred me to the endo, because they cannot help me any further. Then she said the reason I might feel so bad and the reason I nearly passed out yesterday was most likely a combination of the heat and my being underweight. I was so angry, because that is why I am there..why am I so underweight. When I said that, she just gave me a blank look and was like "why don't you just call the endo's office everyday to check for cancelations." I even looked into ordering a 24 hour saliva cortisol test out of my own pocket but of course, I am in CA, which is the only state that requires a prescription for that to be shippped....I swear, this is the biggest PITA ever! I just want to feel better, isn't that why there are doctors in this world?

 
Old 06-26-2008, 04:18 AM   #11
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Re: Feel terrible and endo can't see me till Aug. 6th

This is absolutely crazy. First check to see if there are any independent laboratories that you can use to get these tests. Most do not require a Doctors order. You do have to pay for the tests, but you can not walk around for 6 more weeks like this.

Go to the emergency room, if you are near a University Medical Center choose that one. They tend to me a little open minded and less worried about money.

You Primary Doctor is a liar, he can order these tests, the laboratory will actually do the testing and send the results, it's a common simple test.

I am so sorry that your being treated this way, but it is not at all uncommon, in this day of 7 minute office visits and Doctors burned out.

I am sure the emergency room of a medical facility not associated with your Doctor would order these lab tests, if they are in the same practicing group they might not want to step on his toes, so to speak.

Your health is worth whatever it costs, the cost of a adrenal crises could be the loss of life. If you can not do any of the above, then you must rest, easier said then done, but you have to remain as unstressed and rested as possible.

I would also look for a different primary Doctor, this one does not care, is not telling you the truth, not treating a symptom that is possibly life threatening situation and deserves not to be treating patients.
Let me now how it goes
Geoff

 
Old 06-26-2008, 06:28 AM   #12
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Re: Feel terrible and endo can't see me till Aug. 6th

i recommend the ER too - sometimes they even have endocrinologist on staff or on call.

 
Old 06-26-2008, 07:03 AM   #13
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Lightbulb Re: Feel terrible and endo can't see me till Aug. 6th

Carol,
I dont know anything about your health conditions but I have been in your shoes with my own (which are completely different). The woman you spoke with on the phone who refused to do the auth to another doc needs to be reported. I guarantee if your primary or whoever her boss is knew how she was treating patients, they wouldn't be happy. Don't sit in silence while staff who basically controls if/when you can be treated refuses to help you. It's not her job to decide whether or not you should be seen yesterday or in 6 months. Her job is to do the auths and to help you...not to place judgement or get an attitude with a very sick patient or any patient for that matter.
Because of the things I've been through with docs and hospital staff, I now do patient advocacy work. You need to be your own advocate. If one person doesn't help, find someone who will...go up the chain of command if you have to...I've had to go all the way up to the Hospital Administrator before. Do what you have to do to get what you need. That auth woman has put the hospital at great liability by not helping you. If something happens to you before your appointment, it's their fault because you tried to get treatment sooner and were refused some simple paperwork! It just makes me sick (ok - even sicker) to see that this is happening all over the face of healthcare. Please take matters into your own hands and realize that if you don't, no one else will and you will just continue feeling worse and the stress of what you have been through will make you sicker than you already are.

I will keep you in my thoughts that things get cleared up for you sooner. Sorry for the long post but I hope it will help.

 
Old 06-26-2008, 12:08 PM   #14
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Angry Re: Feel terrible and endo can't see me till Aug. 6th

Here here Looking42nd! You are so right a patient HAS to keep pushing and going higher in the chain to get what you need. We truly must fight for ourselves and with our loved ones by our side fighting when we run out of energy. I have learned the hard way that if I don't like the first answer then it is my right to push forward until I agree. I have been through so many not so good Dr. in my life and have also had some truly awesome ones.

Only you can fight for yourself and I know right now lulu2008 you have hardly any fight in you. I have been where you are! I was in crisis when I finally got to the Endo who thankfully knew imediately what was wrong with me and treated me within a couple of hours. I was ready to get up and run, eat, shower, wash my hair all the normal things I had stopped doing ewithing hours of my treatment starting. I too went to the ER a number of times and had blood work done and IV's, which helped. They also missed the diagnosis there but the IV helped. The one time I went I was paralyzed, my potassium was so high and my sodium so low yet they missed it. I too was disoriented and laying in my bed not knowing how to talk or what things were, it was like having amnesia might be, looking around, not knowing where I was or how to recall the name of a dresser or bedside table etc. However my point being the ER is a better choice than nothing when you are this bad. They may not do the test but then again maybe they will. If you get a Dr who will listen to your side of it AND your husband will be there with you INSISTING that you have the right to the treatment, FIGHTING for you and refusing to leave until someone helps you and gets you the test you will be on the road to recovery. You do NOT deserve to be treated the way you are and you NEED immediate care. Please take the adivce of others on the board and rest as much as you can, don't stress, eat salt or salty food, drink plenty of water, dehydration causes nausea so if you can get enough in you it will help that and so will an IV, it might give you the strength you need to get your point across to a sympathetic ear rather than a selfish ear like you have been getting. Your story makes me so crabby! I will be praying for you and watching the board for updates.
Diane44

 
Old 06-26-2008, 02:04 PM   #15
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Re: Feel terrible and endo can't see me till Aug. 6th

Thank you all so much! I called my insurance group myself and asked for a list of other endos I could see and then I called each one personally and found one who can see my on July 14th. The receptionist there said that he will do a one hour consult and then write the lapslips up for me to go have my labs done the next day and then go from there. She gave me the number of an urgent care affiliated w/ them if I feel like I need to get in sooner, but don't want to go to the ER. I slept a lot last night and luckily my kids slept in this morning so I woke up feeling so much better! I keep drinking Gatorade, is that better than water because of the electrolytes? I think I need to make myself take it easy, though, because as soon as I woke up feeling better I went to run one errand and now I am back to being nauseous and really fatigued. My husband is saying the same things as you are all saying, I just feel like everyone is going to think I am some hypochondriac or something, because besides being really thin, I look fine...anyway, thank you all so much for the advice and kind words, I will keep you all posted. My husband mentioned that he read about DHEA supplements helping people feel better, would this be something I should wait to ask the endo about or should I go ahead and start taking them now? Also, if I do have Addison's could I have had this my whole life and not known (I am 26 years old)? My dad told me that I ate salt like no one he had known before, and I did pass out about 4 or 5 times growing up, usually at school on the playground or walking home from the bus stop. I also have always been super thin, to the point of being teased when I was young and even during both of my pregnancies, it was hard for me to gain the recommended 25 lbs.

 
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