Visit to the Endo, and some chiari stuff.

I went to see my endocrinologist on Tuesday. I just wanted to fill him in on everything that has gone on since I last saw him, which was November. They took some blood to test my thyroid, ACTH (pituitary) and they are checking my estrogen levels to see if I could possibly be perimenopausal. I have pretty regular but awful periods. Once in a while I have one that is a week early, but I’ve never had a late one or missed one. They make me absolutely sick. I also have hot flashes, which can sometimes happen to people when they have their period, but I seem to have quite a few menopause-type symptoms so it would not at all surprise me. Those symptoms could also be explained by a thyroid malfunction, so it’s hard to tell. I will probably get the results in the next few weeks.  

The good news is my Endo says that my Addison’s Disease is pretty well under control. I feel pretty lucky because in my support groups on facebook, other Addisonians are in the ER for crises all the time, and I am not. I don’t know why I’m not, other than the fact that I have a top-notch doctor, and a family who loves and takes care of me. I am relieved to hear him say that.

As you’ve read in my other posts, I’ve been having chronic heart palpitations and chest tightness. Through process of elimination I’ve been able to determine that I have a newly-developed sensitivity to sodium-based preservatives and so-called “flavor enhancers” (whatever the f*** those are…), and now that I have eliminated them from my diet I rarely have an episode anymore, unless I am dehydrated or I eat something with preservatives in it by accident. You wouldn’t believe how hard it is to find foods that don’t have a bunch of bullshit in them these days. I don’t even have to read the ingredients anymore. If I glance at it and the list is too long, I put it back on the shelf. My crackers are only supposed to have flour, yeast, water, and sodium chloride (which doesn’t bother me in small amounts.) If there is anything beyond that, it’s gotta be bad. If sodium chloride is the only form of salt in the product, and the serving has less than 500-600mg of sodium, then I can eat it without an issue. I’ve been eating a lot more things that are made from scratch at home rather than something from a can or box. It’s really hard when your energy is limited to not be making easy prefab meals, but I have my mom to help me out so I feel pretty lucky.

I also have reactions from products with high fructose corn syrup for whatever reason. Regular cane sugar in my coffee doesn’t bother me at all. My blood sugar levels are always within normal range so the only thing I can think of is I’m allergic to it, which is a bummer because it’s in freaking everything.

I’m having some new issues with my chiari. I don’t know if it’s progressing, or if it’s just the fact that it’s summer, but I feel awful. Whenever I get head pressure now, which is practically every day, it makes me want to throw up. Sometimes I actually do, but most of the time I am fighting it and trying not to gag. It sucks because it lasts for hours. The weird thing is, it doesn’t ruin my appetite. I could be hungry and trying not to throw up at the same time. I guess that’s how you know it’s not directly related to my stomach. I usually try to eat if I think I’m not actually going to vomit. I thought maybe it could be a hormonal phase but it seems to happen even when I’m not having my period. It does get worse around then though. But then again, everything gets worse around then.

I’m having an especially hard time with sitting and bending over. It has always bothered me but it’s getting worse every day it seems. It makes me antsy and I spend a lot of time standing to avoid the pain and pressure from sitting, and in turn my feet hurt at the end of the day. The list of things that result in an immediate relentless headache is getting longer and they are also getting harder and harder to remedy. 

I have gathered all the necessary medical files to submit to the neurosurgeon so he can review my case before I go in to see him for a consultation. They will be mailed off soon and I should have an appointment pretty soon after that. Every day I look forward to it a little more. I am more afraid not to have surgery than I am to have surgery. I don’t know if I will be saying that when surgery actually becomes a reality but I’m also not sure I will feel so different about it than I do right now.


    • That sounds painful. My legs ache when I stand too much but I can’t imagine having swelling. I know all things point to surgery at this point, I’m just trying to decide when to have it. I have a really bad time in the summer heat here that often extends into november, so I’m thinking it would be best to schedule my surgery in december or so. Part of me doesn’t want to wait that long but I don’t want to be heat sick and recovering at the same time. I guess it will depend on if they can do the surgery endoscopic or not. I heard it cuts the recovery time in half. It will probably be easier to decide when I talk to the surgeon and see exactly what type of decompression I need. I’m getting to the point where I’m more afraid not to have surgery than to have it.

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