The Frustrating Hormonal Link

Written on 11/10/14

A little background info on this post is that my historical patterns of episodes seem to indicate that my changing hormones are maybe my number one trigger next to positive excitement. I cannot tolerate exogenous hormones at all, and as a result have to use non-hormonal methods of birth control. I’ve researched and am trying to get some testing done that could shed some light on the relationship between my episodes and my hormones. What I’ve learned is that hormone testing is extremely hard to come by. For a lot of reasons, some of them good, some not. The information below is the very best I have gotten so far, in many years of research. It’s not much, but at least it’s something. And something can lead to something else. So, I’m hoping to follow this lead.

I had an appointment with my gynecologist today and got her to briefly discuss more intensive hormone testing throughout the month to try to see what things look like when I’m normal, and when I’m in an episode. She says that there might be “saliva” versions of the hormones testing still available at compounding pharmacies.

Here’s how it works:

I call up a pharmacy to see if they are a “compounding” pharmacy. Most likely these WON’T be big chains like CVS or Walgreens. More likely it will be a small privately owned family pharmacy that has been around a long time. Then if they are, I will ask them if they have saliva hormones testing kits available. If they do, all I have to do is go in to the pharmacy and talk to the pharmacist about having the tests completed. I asked 5 times to make sure, but they are certain that I do not need any type of documentation or prescription or anything for this. Anyone can just walk in and ask for this. Then, I think it is up to me and the pharmacist on how often I test my hormones. I’m thinking once or twice a week until I am clued in to any patterns, then I could hone into a particular week if I have reason to suspect something.

Oh, and guess what? Insurance definitely doesn’t cover this. It will be all out of my pocket, and they had no idea what I can expect in the way of price. At least in this small town, I probably won’t have too much trouble finding an old family pharmacy that compounds. Finding one that carries the tests might prove to be more difficult. I do have a couple of good friends who are pharmacists locally, so maybe if I bark up their tree I can make some magic happen.

Another topic of discussion was a future hysterectomy if we determine that hormones are playing that kind of role in my CVS. She kept saying that at my age she would want to leave my ovaries, and I kept telling her that would defeat the purpose, and that my ovaries are what have to come out to end the hormone craziness. Then she goes on to tell me that I wouldn’t want to experience the symptoms of menopause unless I have to. I begin to shake my head and think, “here we go” in my mind. I told her that any symptoms I experience will be heavenly compared to my CVS symptoms, and that I would gladly trade them any day. She continued in this motherly voice saying “hot flashes are bad honey, etc…”… Oh my, I nearly laughed loudly in her face. Why oh why won’t the doctors learn about what happens to us in episode??!!!???!!! Instead of being an ass  about her ignorance I contained myself to chuckling at them and telling them that they must have no idea what a CVS episode entails. Bring on the hot flashes baby, bring ’em!! Because I promise I will LOVE it compared to my episodes! I can tell they didn’t understand and/or believe me, but I just lost the motivation after that. I tried, I really did. But after that I was done and ready to leave.

Ohhh, it just kills me how every single time I visit a doctor it puts me in a terrible mood. Even the best of my doctors like this one is (excluding Dr. V of course). It is so annoying to walk into an appointment, knowing that I know much more about my disorder than my doctor does, yet I’ve gone to them looking for answers about it in some fashion. Answers that I won’t get. I get my hopes up every time. I shouldn’t do that. Why do I get my hopes up? I should be used to this by now. I should know that they probably won’t know anything about CVS or be able to answer my questions, and be pleasantly surprised if they do. (I realize I got some answers today, and I am pleasantly surprised I have an answer, just not happy that it will cost me an arm and a leg.) Instead I get angry about everything. Angry about the broken medical system and the “doctors” that it has created. Angry that I waste my money every time I go. Angry that I am a doctor myself and I can’t just order myself the tests and medications I want myself to have! Sigh… Forgive me, I needed to say all that or I was about to explode.

At least this place gave me info that I didn’t previously have. They aren’t the worst. I’m just frustrated. Some of the lower points of the visit went as follows…

At the beginning of the appointment, they had obviously not refreshed their memories on my history/conditions. I had to explain it AGAIN, and wasted valuable time I could have spent asking my questions. So, I was already clued in to their lack of knowledge on the CVS. But then they tried to make me feel like a dinosaur for requesting to be fitted for a diaphragm even though we discussed how hormones and IUDs are not an option for me. No one seemed to understand that it really is my only option They kept reiterating how outdated diaphragms are, and that no pharmacies will even carry them anymore. They have to order it straight to them, and I come pick it up later. They didn’t understand why I want it, even though I was explaining that I can’t tolerate hormones. They don’t think insurance will cover it, so I had to promise to pay in full for it if they don’t. Which brings me to another rant…

Why in the hell won’t my insurance cover it when I have demonstrated that I am unable to tolerate hormones??? Why in the hell doesn’t the DOCTOR decide what I need and what the insurance has to cover for me?? Why in the hell do I have to financially break myself each month to pay for the supplements, non-hormonal BC, etc… that are helping my diagnosed medical condition when every paycheck I receive has a portion deducted for insurance. What the hell am I paying for? Nothing. Absolutely nothing, that’s what.

The most frustrating thing is that I could be on the verge of figuring something out that could help me and others. Yet there would be no possibility of it happening whatsoever if I weren’t researching, learning about, and pushing for this myself. If not for that I’d just be at everyone’s mercy who tells me that hormonal links are hard to follow. So what if it is hard??!! Do it anyway! Think of what we could accomplish if it gave us big answers for those of us with hormonal links! But, alas, it is not so… I understand why. (Money.) But understanding makes me angry!

One more rant about this experience, except this one is for your amusement….

Today was the first time I have ever been mid-exam – feet in the stirrups kind of mid-exam, and the doctor gets a beeper telling her she has to go deliver a baby NOW. She and her assistant hastily apologized and left the room with me spread-eagle alone in the room and waiting for the nurse practitioner to come in and finish. Ummmm, is this common? Surely this has happened to someone other than me…?  I chuckled about it, but I really felt very exposed and abandoned! It was a new one for me….

I hope I didn’t make too many of you men uncomfortable today, but probably not many men clicked on this post anyway [wink]

Some Doctors Are My Nemesis

Written on 4/24/14

Yesterday I decided to walk into my general practitioners office to have blood drawn. I want my Co-enzyme Q 10 (CoQ10) levels tested before I start on the supplements to know what my baseline is, and if supplements change it at all. And I wanted him to prescribe the L-Carnitine. I haven’t taken the supplements in almost 4 years, but I’m stepping up my game since I have had episodes breaking through after a long period of wellness. I want to make sure that I’m doing everything I can for my mitochondria. I love that I can use natural supplements to do so.

I didn’t get to see my doctor. I was pawned off on the nurse practitioner AGAIN who has seen me the past several times I have been in. The last time, the reason for my visit was to make them aware that I had several episodes over the last several months. That’s when he pulled out his phone and looked up what the Mayo Clinic says on CVS. I wanted tell him I could regurgitate all that to him if he would just listen to me. I get the feeling they think I am a hypochondriac. Maybe it’s because I don’t go to the hospital where my general practitioner is an attending and they don’t see my episodes. I’ve had better luck in the ER in the other hospital local to me, so I just go there and none of them at my general practitioner’s office ever know about my episodes until I report them later.

Anyway, the first thing he did was walk through the door and address me as “trouble”. I was crestfallen immediately. I can tell without a doubt that he knows nothing about this. I had anticipated having to see him instead of the general practitioner who does actually know about CVS, so I brought him the research article about treating adults with CVS with Q10 & Amitriptyline. He flips through it for 5 seconds and then says, “I wouldn’t put much stock in these type of studies”. (This is a good study!) I was on my defensive big time. I told him I have researched this in-depth for 7 years now and that most of the information I use is anecdotal from the message boards and that the only reason I brought that to him was so he could see a reference that would justify my asking for the test and the script for the supplements. He kept trying to be dismissive about things I said as if I was some crazy person making things up. He kept ignoring me when I spoke to continue typing into the computer. I also gave him a copy of the 2008 Empiric Guidelines for Treatment of Cyclic Vomiting Syndrome and told him that I meant for him to keep the research article and empiric guidelines for him to read about it later. He handed them back to me 3 times with me saying “I brought those copies for you”, as he continually handed them back. He finally took them out of the room and I’d bet anything he just tossed them.

He did finally agree to script me out the supplements. The lab there couldn’t accommodate a blood sample for CoQ10 because it has to be frozen and protected from light. (He had to go look it up to tell me that) And that I would have to go to the hospital to have the blood drawn. He then starts saying that it is probably an expensive test and my insurance might not cover it. I asked him how they could refuse to cover a test for which I have doctors orders that is concurrent with the treatment of CVS for which I have the diagnosis. He shrugged his shoulders, said that he had put his “stamp of approval” on it, but didn’t know what would happen.

He then said, “If it were me I would just take the supplements and be happy if they help. Why do you HAVE to know your current blood levels if it makes you feel better?
I almost came apart. I said that no I didn’t HAVE to know, but that I wanted to contribute to the research on this disorder. He sighed and said ok.

I do not understand this attitude in a medical professional! Why why why would a doctor be so uninterested in something that is a debilitating disorder for people?? Why would you not encourage all the testing possible in efforts to learn more about this?? As a veterinarian who has been in private practice, I can tell you that when unusual things come in we eat. it. up. It was a great day when I could learn something new and say that I have treated something successfully that most other vets won’t have the luck to come across in private practice. Those are the little gems we hold near and dear to our hearts and brag about when we are in a room full of other veterinarians. I simply don’t understand any attitude that is less than enthusiastic about learning.

I could tell that this guy had no interest whatsoever in learning about CVS. I don’t want to see him again. I’m thinking about firing the whole practice if my next visit is the same. I have an actual yearly appointment with the general practitioner soon, so I should get to see him and not the nurse practitioner, but if they give me the nurse practitioner again on my yearly visit with my doc, I’ll pitch a fit right there and not leave until I see him.

I can’t even begin to bring up topics such as mitochondrial dysfunction to discuss in more depth because the people here don’t even know the basics of CVS, and might not even believe in it.

I need specialists. I need a neurologist to talk about dysautonomia with.

At least I didn’t leave empty-handed. I have orders to give a hospital for the blood work and I now have a script for L-Carnitine and CoQ10. I will have to see if insurance will pay for the blood work before I go, because I don’t have extra funds for it now.

Just SO frustrated now. I know I’m not alone. Thanks for the vent!