Another let down appointment today…
But first – I was diagnosed with a hormone imbalance last year (mostly way too much estrogen). On top of suddenly not being able to walk to the mailbox (hey POTS), I felt like I was going through menopause. This is where you probably stop reading if you’re of the male persuasion. Really. Horrible hot flashes, nausea, fits of rage, uncontrollable episodes of crying, really painful ovulation and cysts bursting. I was still nursing my youngest son and my cycle was trying to come back – that’s when the POTS really made it’s presence known too. It didn’t take long to notice that my POTS is worse at certain times of my cycle and that this phenomenon is very common in the POTS community (which is mostly female, unsurprisingly). It definitely seems that hormones have an impact on Dysautonomia/POTS symptoms – I don’t think that the imbalance is my cause, but that it makes my symptoms, and ability to cope with them, much worse. Even women with normal hormone fluctuations notice that their symptoms flare with specific times in their cycle. Anyways, a radiologist thought an ultrasound showed an abnormality in my uterus but a follow-up MRI didn’t reveal anything. So, I went about my business trying to figure out why I couldn’t walk to that damn mailbox anymore.
I was put on bioidentical progesterone by a wonderful doctor (the first to mention that she thought I had POTS) to try to counteract the excess estrogen. I also started taking calcium d-glucarate – a supplement to help the body eliminate excess estrogen. Many of the physical symptoms I originally had the ultrasound for started to improve and I also didn’t feel like I was riding the crazy train anymore (or at least as often). I’m having trouble trying to decide where to take this entry – partly because my head is pounding with what feels like the beginnings of a migraine and also because I can’t decide if I want to stick to the medical side of things or the emotional side. I don’t think the two can be separated very well in this case though as I strongly believe one is caused by the other.
*I can’t write anymore at the moment… *
I think the worst is over. I’m wearing my sunglasses inside but whatever… Light is evil. I hate coming back to an entry the next day and trying to pick it up again. I just feel done with it.
I had my thyroid removed almost 3 months ago and last month my TSH was 16.8… My surgeon and endocrinologist wanted to keep it around 1 – so it was a tad off. My cycle was two weeks late (messed up thyroid hormone can do that) but my hormone doctor took me off of the progesterone and wanted me to look into it with my new doctor. This all happened the week we were driving 1500 miles. I started having other concerning symptoms so when I saw my new/old primary here and blindsided her with the new and not so improved me… She ordered a pelvic ultrasound. It showed some issues with my uterus, including a “mass”. My appointment yesterday was with a lady doctor to address that. She was awkward and rude, couldn’t explain what my ultrasound results could be, had no interest in why I might have a hormone imbalance, but did offer me two surgical options under general anesthesia. I was told to call her when I made up my mind… And that it was Friday afternoon and I was making her type too much. Her final opinion sealed the deal that she was not the doc for me: “Cancer would be really unlikely, but I guess you could be a zebra.”-Insert shrug and look of disdain here- I THINK THAT HAS BEEN ESTABLISHED. I have some very unhorse-like shit going on. Um, second opinion please.
In medical school, doctors are taught “when you hear hoofbeats, think horses not zebras” to avoid looking for a complex or rare diagnosis first, when something common is more likely to be the problem. Unfortunately… Some of us ARE zebras and many physicians give up if a horse isn’t found.
Anyways, that’s the latest. I have some “mass” in my uterus and a hormone imbalance caused by something that is attempting to destroy my life and the lives of those around me. This is the emotional side I am hesitant to get into but it is being caused by a medical problem that has been ignored for the last year. The hormones helped some but off of them, I don’t know who the hell I am. I yell, I scream, I throw things… I get so angry over little things that I want to break and destroy everything around me. Ten minutes later I’ll be thrown into a despair and hopelessness so deep that I don’t feel like I can climb out. I cry uncontrollably and then I’m angry again. The roller coaster continues and goes through apathy, where I don’t care about anything, laugh at things that aren’t funny, and loop through some more rage and depression. I’ve always been an emotional person, with a bit of an anger problem, but this isn’t me. Some level of anger, depression, and hopelessness is to be expected with any life changing illness – but this is scary and coincides with certain physical symptoms at specific points in my cycle. It exacerbates my other illnesses. Like I said, the progesterone helped a lot with the emotional and physical issues but I don’t want to go back on it until someone can freaking figure out WHY my hormones are messed up and WHAT the mass in my uterus is. I’m not someone that’s okay with taking medicine just to treat symptoms without knowing the cause of the symptoms. I am sure that if this hormone imbalance can get figured out, SOME of my health issues could be improved – even slightly would be okay. But I don’t want to be scared of myself, frighten my children, and have no idea who I am anymore. So, on to finding a doctor who is interested more in the root cause of this crap than they are in just cutting me open.
Today is a hard day. Today I just want to sleep, so I don’t think, because I cry when I am awake. I am overwhelmed at everything that’s to come and 99% sure that I cannot handle it. There is an annoying, stubborn 1% that won’t let me just give up.