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Post by Karen on Aug 22, 2011 23:29:04 GMT -5
Dr. Keri is way smarter than the docs you pay to see!
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Post by KSA on Aug 23, 2011 11:37:39 GMT -5
I'm adding in a new set of eyes. A endrionologist. The more I read the more I am convinced I should add this doc to the mix. My nutritionist says hormone imbalance,liver issues and possible adrenal function. He wanted $45 visit fee to tell me answer about the bc. It kinda rubs me wrong I'm paying out of pocket for help and I can't call and ask a question? Atleast the other doc if I choose to see a new doc its $15 co pay and goes thru my insurance. I leave each visit w nutritionist paying at least $100. Let me know what you think Karen I value your experience with all of this. I have a doc in mind I have not called yet.
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Post by Karen on Aug 23, 2011 18:01:31 GMT -5
Yes, I think an endocrinologist would be another good doc to add to the mix. Even if he/she doesn't get you any answers, at least being able to run some tests and rule some things out would be completely appropriate. I think you have a lot of different things going on, but it's quite possible that part of it is related to your adrenals. Your adrenals are what help your body cope with any sort of stress, and with the physical stress you've been under with your current health conditions, well, you could be wearing those poor little guys out big time. Doesn't matter what plan you have in place to get better - if your adrenals can't keep up, you won't get better.
Just out of curiosity, do you have dark spots on your skin that weren't there before?
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Post by KSA on Aug 23, 2011 18:27:36 GMT -5
Yes I do they pop out of nowhere. The most noticable is on my leg looks like my freckels are darker. I don't know how I stay out of the sun but the spots on my face are so bad I have to wear coverup now. I could walk out with nothing on my face I figured age spots I am getting old lol. I have to pick a doc Seth & I discussed it today and we want new eyes I'm calling tomorrow. Just gonna go for it we are not in any shape for Mayo Clinic. I am so irritable I want to scratch my skin off. I gotta do something to figure this all out it is affecting everything. If I can be honest it really is turning me into a total b*tch. I wish I had a nice way to put it but that is the truth.
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Post by JC on Aug 23, 2011 18:43:13 GMT -5
I was hoping you would see an endocrinologist. Please GOD I hope they help you!!!
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Post by Karen on Aug 23, 2011 21:53:42 GMT -5
Yeah, the dark spots are a big indicator. WHEN you go see an endocrinologist (not if), make sure you point those out, and don't wear make-up to cover them up! And Keri, if you need to be a total bitch right now, that's completely ok. Sometimes you have to be a bit more assertive to let those around you know what you're really going through, and to keep pushing for answers. I'm glad you have the fight in you to keep trying other doctors, even though I'd love it if you could skip right to the top and go to Mayo. I understand it's not in the cards at the moment, but going to an endocrinologist is certainly a step in the right direction. Like I said, there's probably more going on, but if you have adrenal issues as a result of those other issues, they're not going to get any better until you get those poor adrenals up to snuff! I'm proud of you for not giving up, hun!!!!
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Post by KSA on Aug 23, 2011 22:10:49 GMT -5
Thanks girls I almost was not gonna do it and live like this but I am seeing everyone on here going and I gotta set a example I will post on my thread more details I kinda hijacked this thread lol. I am on the computer researching so much now that I kinda feel like a med student;) I'm not sure if I ever told anyone on the board that I never knew a thing about medical stuff til I got sick the more I learn I get so intrigued with our bodies I wish I would of went in the medical direction at a hospital library or a school. I check out so many books now on these topics. It is neverending reasearch I am really starting to enjoy it. I don't like being sick but glad I am finally getting the hang og reading and understanding my problems better. With the help of Karen & Dr. JenNasty lol;)
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Post by Karen on Aug 23, 2011 22:20:44 GMT -5
Hey, I was clueless until I had a reason to learn this stuff. It's funny - I always told myself if I went back to school it'd be for engineering, but I would consider women's health now, too! You have to be your own advocate, and again, I'm so proud of you for not giving up!
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Post by KSA on Oct 25, 2011 16:31:52 GMT -5
Update say DO today and test came back good. What didn't tho was of course ana & iron bothof which I knew before but he ran them so I could see if anything changed and no they didn't. Adernal Fatigue seems to be what local chripracters have been throwing out to many patients and my doc has to then clean up the mess run the right tests and explain. Now I am clear on most of it. Like Karen has shared about her test witht vials of blood being taken thru th day we had the GOLD Standard of testing from a endriocologist point of view however some docs won't do it like this example my chiropracter and will send off other testing and it not be a tru reading. Scary for someone who does have this bc it will need treated and scary for people thinking they have it bc something else could be wrong. Please ladies consult at doc for this test. A nutritionist nor a chripracter ca rder certests to be sure thatu have it which I clearly do not so I can stop taking the supplemnt that costs me a ton to get my levels are great and they said either way take it or not I will be at a good level. So with that information I told them of the estrogen level testing and had it with me name and all. I'm a dumb ass bc obviously my research slipped or they had a goole day its a test that pretty much shows good and bad estorgen so what do you do with the results ? It was said to me like this if it comes back you have more bad than good would I go based on that to reemove a breast? Nope I would see a oncologist right so basically the test is nothing just something they run & charged me for. Is it worth it to know? Maybe I suppose but no one can change my genes and I have cancer in them from my family history anyways so it is like ok whatever the chiropracter knew the results from reading family history right? I am all for hollistic and supplements but the right ones & my DO is too. All in all its not bad to see either docs. Overall healtth is what I want but I do question the unnessary cost, supplements and genric testing if it does zero good for me. DO's final conclusion is I have endo and it sucks, I have low iron and can't get a infusion, I have colitis which keeps me exhausted when I am on bathroom duty and I have a mass on my liver that he wants looked at by a gastro doc and suspects its endo. I hope this helps & I know some of us really do have thos disorder. Karen does and I feel for you honey cause the way it was described to me I can't even imagine how you feel day to day. I hope they get the treatment you need and the rest of us out there watch out. Not everyone is up front becareful who you hand $ to for testing or supplements.
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Post by KSA on Oct 25, 2011 16:36:41 GMT -5
I have to add one more bit of info from the DO on any given day I could have low adernal function if I am stressed anyone could hey we live in a stressed out world. But if you have the test we had had and the levels do not double than a issue is flagged. Its all in that time test. If you need a test that is the one to get it is accurate & does not cost out of pocket it is ran thru insurance.
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Post by JC on Oct 25, 2011 17:25:35 GMT -5
I'm glad you're seeing that doctor. Is there anything he's doing for you or is this it? I like how you explained that some tests are unnecessary and inaccurate. That is so true and I really want to learn more about hormone testing because seems like such a shady area of medicine only because our hormones are difficult to test because they fluctuate so much. It would be a good thing to figure out what tests are valid and which ones doctors just try to sell us. So what's on the agenda now Keri? Are you feeling OK? Next is to check the liver mass?
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Post by Karen on Oct 25, 2011 18:57:35 GMT -5
I agree, some tests are inaccurate. However, a lot of docs won't run the stim test unless you're really, really in rough shape or you beg and plead for it. I've taken the saliva tests a few times and they take measurements at 4 times throughout the day. Since your cortisol levels are higher in the morning and taper throughout the day, it's actually a pretty accurate measure of cortisol levels throughout the day. It measures up to the stim test I had done for the most part.
In terms of the other test for estrogen, the results of the test won't mean you'll need to take drastic action, but they can at least let you know where your current levels are, and if necessary, can supplements with the PROTECTIVE form of estrogen. I'm not saying you need to do that, Keri, but want others to know that there are options. My estrogen quotient is not healthy at all, which puts me at a higher risk for breast issues, which is part of the reason why I'm supplementing the good estrogens. All are low, but the bad estrogen is higher than it should be.
Whatever the case, I'm glad you had a doctor at least rule things out, make sure you're on the right path. Your body is under SO much stress that it's something I'd consider re-testing in a year. Adrenal function can change significantly depending on how much stress and how long they've been under stress.
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Post by JC on Oct 25, 2011 19:32:22 GMT -5
Oh Karen. You have such a wealth of knowledge! ;D
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Post by Karen on Oct 25, 2011 19:41:59 GMT -5
Keri, meant to ask - do you have the test results? Was your starting cortisol level in the middle of the normal range? Did your cortisol levels double, or did it do more/less? Do you know your starting ACTH level?
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Post by KSA on Oct 25, 2011 22:23:23 GMT -5
Karen wow it is like speaking to the doc you know all the right words lol. It did raise I was in the 17 to 19 range each time they checked it. Sorry but they did do the acth level I just forget because they were most concerned again with my iron and really do believe it is the culprit of the fatigue. I know I said we were not going to even try it but with my GP and the endocrinologist concerned about the low levels with alot of thought I am going to try a infusion again. A different kind of iron. I may even change doctors I have not decided yet and although I am scared to do it I can not keep ignoring it and acting like it is not a issue. It is and if I can try one more time and make it thru it then I may get the energy.
Karen thank you so much for all the input Jenaya too. It is such a shady area and Karen you are so right about the fluctuation. That was mentioned to me also. Its kinda similar to the ANA one day it can be normal and next day high. I have blood work scheduled again and the office is willing to keep track of my sugar every 3 months but I can get that from GP too.
GI is looking like the next step at least a consult.
I'm kinda overwhelmed right now:(
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