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    Hey, guys...update on me.

    I know I haven't been around much, and I'm sorry...

    I saw the doctor again yesterday, and wanted to update you guys.

    Hair loss doesn't seem to be getting worse. Still waking up with extra hair on my pillow, etc., but not worse then that. Still tired all the time.

    Went up to Yellowstone a couple of weeks ago, and even simple walks (no one else out of breath) were leaving me panting, pale, throat tight, and my muscles hurting. Same thing happens with most over exertion.

    Having digestive issues.

    And, last but not least, a mucked up menstrual cycle.

    Saw the other doctor that shares an office with mine (mine was sick). He explained the tests they'd done before better...seems they'd tested for more then I thought they had. Multiple thyroid tests, including the hormone that comes from the hypothalamus (is that righ?) that tells the thyroid what to do. Blood sugar also fine (YAY!) Cortisol fine. Slightly high testosterone, but within normal boundaries.

    So I went over my journal I've been keeping with him, told him in detail about all of the above. I also asked him if a vitamin or mineral dificiency (B, Iron, D, etc) could cause my symptoms. I also mentioned to him (like I had with the other doctor) that I'd had a genetic panel before, and in addition to my clotting disorder, had something related to not metabolizing B vitamins show up, but couldn't remember what, for the life of me.

    He asked a LOT of questions...we spent about an hour talking. His theory is that I possibly have a form of Anemia tied to a lack of B12. Apparently, there's a genetic factor that can make the small intestine not absorb B12...meaning that someone who has this issue can take as many supplements as they want, but slowly have more and more trouble. He also theorized that my clotting disorder could be the reason abnormal bleeding hasn't happened until now, when that's usually an early sign.

    So he had blood drawn for B count, Iron, and red blood cell count, and wants a stress test done to be on the safe side with the tight neck and chest feeling (especially since I have a family history of very young heart disease).

    Symptoms are pretty spot-on for what I'm dealing with. If this is it, then I'd need to have a shot every week, to bypass my faulty gut.
    Great Grandmother's Kitchen

    #2
    Re: Hey, guys...update on me.

    Hey, at least you're finally getting some answers!

    Hopefully you can get on a regimen of more good days than bad
    The forum member formerly known as perzephone. Or Perze. I've shed a skin.

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      #3
      Re: Hey, guys...update on me.

      I'm sorry to hear that...

      I wish you the best!
      Every moment of a life is a horrible tragedy, a slapstick comedy, dark nihilism, golden illumination, or nothing at all; depending on how we write the story we tell ourselves.

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        #4
        Re: Hey, guys...update on me.

        Oh whoa, I musn't pay attention at all, Des - I didn't even know anything was wrong with you. I hope you feel better soon, and that it's an easy fix


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          #5
          Re: Hey, guys...update on me.

          Yikes! It sounds very scary, but it sounds like they've caught it early enough to help you out. For that much I'm glad to hear.
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            #6
            Re: Hey, guys...update on me.

            *hugs*

            I'm so glad they are (finally) figuring out what is going on!

            ...of course, I can say from experience that figuring out what is going on can be pretty tricky, especially when its not something common.
            Wonderful Life: The Burgess Shale and the Nature of HistoryPagan Devotionals, because the wind and the rain is our Bible
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              #7
              Re: Hey, guys...update on me.

              Good luck with it!

              I actually hope that it is that anemia thing...I went through something similar in 2007 and it's fairly treatable! And then you'll know what it is!

              Actually judging from your symptoms it does sound pretty familiar as well.

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                #8
                Re: Hey, guys...update on me.

                Thanks, all.

                I've been feeling really guilty about not being around more...I still read what's going on a lot, but how tired I am makes it tougher to respond.

                Danie, if this isn't it, the next step he wants to take is doing a reduction diet, see if I'm sensitive to something and it's giving me grief. We'll see...so far, it's going well all said and done.

                Since I have a lot of health nuts in my family, it's been kind of ironic to realize that while their suggestions (more b, more d, more iron, glucosamine for my joints, etc) are good, they wouldn't do a lick of good if they weren't being absorbed...talk about expensive waste.
                Great Grandmother's Kitchen

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                  #9
                  Re: Hey, guys...update on me.

                  From what you mentioned, did the doctor say you might have Pernicious anemia? It sounds similar to what you just talked about. Anyways, the important thing here is to exclude heart or chest causes for your symptoms. Which is sometimes as simple as listening to your heart and chest sounds, xrays and so on.

                  I don't want you to get frustrated with all the tests! It's just a matter of getting all the serious causes out of the way and trying to find out what you have by exclusion. So your fatigue could be due to anemia, which can be taken care of by taking some supplements and watching what you eat

                  Let us know what your tests results are to keep us updated!

                  Hope you get better soon.
                  [4:82]

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                    #10
                    Re: Hey, guys...update on me.

                    Yep, D, that's why he ordered blood tests for B12, Iron, and red blood cell count...since if it's a form of anemia, that would help him figure out what kind. The B12 thing is also a sort of anemia, it seems...here are the pages he pulled up for me. Accurate on all counts, except for the bleeding gums...since I have a clotting disorder, though, that might be affecting that. Instead, I had my last period start early, last a week, and am still spotting almost a month later. I have an appointment with an OBGYN about that tomorrow. If it's that, though, then he said the lack of B12 would affect my body's ability to produce red blood cells, leading to oxygen not getting where it needs to go, me being pale, out of breath, muscle aches, etc.

                    He listened to my chest, and things sounded normal...the stress test is just in case. My grandfather died of a heart attach, and had his first one at the age of 40, so even if it's just a preliminary measure, the fact that I have this clotting disorder means that I want to do what I can to make sure my heart is running fine.

                    L's been saying the same thing about the tests! As long as we still have options to try, then we're checking things off a list. That's not the same as "we don't know". THAT'S the scare one, IMO. As long as we still have guesses, and keep fine-tuning, we're getting somewhere, right?
                    Last edited by Dez; 06 Oct 2011, 13:22.
                    Great Grandmother's Kitchen

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                      #11
                      Re: Hey, guys...update on me.

                      Originally posted by DeseretRose View Post
                      L's been saying the same thing about the tests! As long as we still have options to try, then we're checking things off a list. That's not the same as "we don't know". THAT'S the scare one, IMO. As long as we still have guesses, and keep fine-tuning, we're getting somewhere, right?
                      Yep!

                      Like when getting your thyroid hormones results and it's alright, you shouldn't be like, "Man, it's not my thyroid." Instead, you should be like, "Yay, my thyroid is all fine and it's kicking ass!"

                      [4:82]

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                        #12
                        Re: Hey, guys...update on me.

                        Originally posted by DeseretRose View Post
                        Danie, if this isn't it, the next step he wants to take is doing a reduction diet, see if I'm sensitive to something and it's giving me grief. We'll see...so far, it's going well all said and done.
                        Can you do allergy tests as well? When I was going through that I got tested for EVERYTHING (really...I was tested for HIV, kidney and liver disease, diabetes, thyroid, cancer as well as anemia), but also for allergies. Aside from the anemia, they also found several food allergies that were more minor but they were things I was eating regularly. I didn't notice an immediate effect (though I had been getting a lot of acid reflux, which stopped when I stopped eating the foods), but things like that can also make you feel a bit sick and tired so it probably wasn't helping the situation. I also noticed the same thing when I was eating wheat recently. Wheat didn't come out in my last allergy test, but that was over 4 years ago and you can pick up allergies in that amount of time. I always thought I was mildly wheat intolerant, but for some reason other gluten products didn't bother me. Recently wheat started giving me acid reflux though and makes my throat swell a bit, so I figured that's a sign of allergies. I was also feeling tired a lot again, and when I cut it out, my energy levels improved.

                        anyway I'd ask (if you haven't already!)

                        Just also a note, if your period issues don't get sorted, you might want to ask about endometriosis. I'm in the process of getting tested for it, and it also causes fatigue sometimes, as well as IBS, painful periods, and weird period schedules (even on the pill). It also -might- be tied with iron and b12 absorption issues, but they don't really know exactly why I think.

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                          #13
                          Re: Hey, guys...update on me.

                          Still waiting on the anemia tests, but I have progress: spent the morning at the obgyn that's part of the same health group as my internalist ( so they share the computer system, notes, etc...hard to find here).

                          Had a full physical and an ultrasound. First, two lumps in my left breast they want me to keep an eye on...nothing to worry about unless something changes, but they didn't used to be there.

                          Second...I saw my ovaries with my own eyes. They look like largish bunches of oddly sized grapes. I haven't had abnormal periods until recently, but she was confident in saying they're polycystic. That would explain part of this, for sure.

                          She wants to just watch them for now, see how things go, especially since we're waiting on other tests still.
                          Great Grandmother's Kitchen

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                            #14
                            Re: Hey, guys...update on me.

                            I haven't commented till now but I just wanted to take the opportunity to say I am following this thread and thinking about you. Please continue to keep us all informed of how you are getting on
                            http://thefeministpagan.blogspot.co.uk/

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                              #15
                              Re: Hey, guys...update on me.

                              Originally posted by shadow1982 View Post
                              I haven't commented till now but I just wanted to take the opportunity to say I am following this thread and thinking about you. Please continue to keep us all informed of how you are getting on
                              Thanks shadow, I appreciate that. I'm not as anxious as I was on Friday, thankfully...the hardest part is worrying that this means I'm going to feel sick like this from now on.

                              I found out something interesting today. Part of the reason why my Dr wasn't wanting to go in the direction of PCOS is because (as far as I knew) there was no family history of it. That's not saying much, though, because my parents had a huge falling out with my dad's family when I was a child.

                              I've been in touch off and on with my cousin on that side for a couple of years now, and since I announced my leaving the LDS church, that side has come out in support for me, bringing me in touch with more members of the family. Turns out this cousin was diagnosed with PCOS last year. I'm going to make getting my insulin levels checked a priority.
                              Great Grandmother's Kitchen

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