Tuesday, December 7, 2010

My Test Results: Perhaps Some Answers

*I posted this update once before. However, I took it down to edit it a bit with the intention of putting it back up again within a day or two. The thing is, I forgot about it until today!*

*Update* Since I first wrote this up, I have actually been feeling a lot better energy-wise and have had less headaches and no inner shaking in my head for the past 3 days, even though I still have the rest of my symptoms**

Truthfully the word that would sum up my feelings lately would be "frustration."

I am now 99.9% sure that my recent health issues are not in my head! YAY! (A good thing....I think?? ). Umm...check that. My health issues might be in my head as in...in my pituitary gland...which is technically in my head. Nevermind.

So, my few days of feeling good suddenly disappeared about a week ago, and now I have been left feeling completely and totally yucky for the past week. Think dizziness, lightheadedness, this weird tremor/shaking feeling inside my head, confusion, memory loss, freezing cold hands and feet that will NOT warm up (multiple doctors have made this observation), major headache, lack of appetite, nausea, abdominal pain, short term memory loss, discoloured toes and dark patches, and increasing fatigue. My blood pressure is often dipping low to 90/60 more or less. Sometimes it's more like 85/54, and other times it's more like 105/70 (much better). And get this, this morning I woke up and told my husband my head feels better this morning, so I immediately checked my blood pressure, and sure enough, it's 115/75, which is pretty close to my normal! That proves it to me. This is all NOT in my head! When I saw my family doctor last week, I think my blood pressure was 92/58, and the room felt like it was tilting from side to side. Not a nice feeling. That's when we decided to buy our own blood pressure machine. When my head feels funny, it's usually low. On the rare occasion when my head feels good, it's normal, or once it was even 130/85.

Test Results: Abnormally Low Catecholamines (I had originally put the test results as Adrenal Insufficiency, but I am not sure now if that is necessarily the case) Read this to get a little explanation of catecholamines.

Last week I saw an internist doctor about my test results from all the tests they did. And they DID find something weird with my tests - All of my catecholamines were low....abnormally low and not within the normal range. (see, it isn't all in my head!) Here's where I must try to hold myself back. I feel like even though they found a problem, they still aren't taking me as seriously as they should be. When I explained my dizziness and low blood pressure problems, I was basically told that ear wax was probably causing it all. I was also told that perhaps cheese was causing my abdominal problems even though I've eaten cheese my whole life and never had a problem before. And it's not like I'm suddenly just wolfing down enormous amounts of cheese.
Okay, the one thing I ask...beg...plead...is that you take me seriously. Please listen to me when I tell you something is still wrong. Please oh please believe me when I tell you (okay, not literally you my blog reader, but you know what I mean!) I used to feel fantastic, wonderful, full of energy, no headaches, no muscle pain, no dizziness (other than when I was pregnant), was exercising, running, baking, cooking, eating well, feeling as fit as a fiddle. I felt good. In fact, I felt GREAT (and, I was even getting up multiple times in the night back then!) And now...terrible, I feel just terrible. There is really no other way to put it. I look back on my time of feeling good with sheer wonder of how in the world did I do everything I used to do when right now I can hardly walk 10 steps without collapsing and my head feels like a pressure cooker while the room tilts from side to side.

From what I know, pretty much all of the symptoms can be related to having low catecholamines. The one thing that doesn't really make sense, is that I had a high heart rate in the hospital, which would usually mean increased catecholamines. Catecholamines tend to increase during acute phases of stress, but mine were low for some reason. When I was hospitalized with severe pain and very high heart rate, I wonder if I was perhaps having some sort of adrenal crisis or adrenal exhaustion. I really don't know what was happening then, but it seems like my body may have just had a bit of a freak-out. It makes sense in light of the fact that I was under a lot of stress at the time. I had so much pain then that I could hardly walk. I was also shaking like a leaf with tremors, low blood pressure, and a high heart rate.

I am not exactly sure what the doctor makes of this, but the question for me is: Are the low catecholamines caused by a problem with my adrenal glands (primary adrenal insufficiency or Addison's Disease) or is the problem with my pituitary gland (secondary adrenal insufficiency) or something else. I am wondering why they are not getting on the ball with further testing. IF, by some chance, I have Addison's Disease (I very much doubt I have this), it is very serious, especially is left untreated. In fact, it was usually fatal before the invention of steroids. I am not saying I have Addison's Disease as that is a very severe form of adrenal insufficiency.

, an indication of Addison's Disease is hyperpigmention; the weird thing is that when I was in the hospital, the doctor noted that my feet look weird because they have dark patches on them and my toes are darker than the rest of my feet. I have looked at a few pictures of hyperpigmentation, and I'm not sure if that's what is going on with me or not. I don't know if it's because I have poor circulation, or because I have some other problem. I do know (and the doctor knows) that my feet don't look quite right, especially with the dark patches. This problem with my feet is a recent problem (as in, the past 2 months).

That is why I am left frustrated. I have been told maybe I'll be referred to an endocrinologist. I think I definitely need to see an endocrinologist...and soon...but it will likely be months if I even get referred. I was told by the doctor that I should carry a paper or something with me because I could just collapse if I actually have a problem with theses hormones. Doesn't the test pretty much confirm there is (or at least, was) a problem? Here is where I get frustrated with the medical system. On one hand, I am grateful to have publically-funded health care because I can see a doctor..several doctors..without having to dish out a dime (well, at least not in a direct way. Let's not forget that we are all paying for the system in one way or another.) I am not even the type to complain or get upset about waiting 2 hours to see a doctor. I would so much rather wait to see a doctor who takes his time with his patients than see a doctor on time and be rushed out the door. On the other hand, I wish I could just dish out the cash, find an endocrinologist that I could see next week, get my diagnosis, get a course of therapy established, and hopefully be on my merry way. Umm...I may or may not be guilty of googling something along the lines of "private clinics endocrinology" :-)

So, I guess I feel a little weird right now. I'm grateful in some ways that we may now have some solid evidence of a real problem and are maybe on the road to some answers. I'm frustrated and unsure about how to go about getting a confirmed diagnosis and wondering if I should be on medication for this problem. We need a lot of prayer for wisdom on what to do and wisdom for the doctors. And I definitely need prayer for my own attitude and patience. Of course I would like everything to happen lickity-split, but I should know by now that things never happen as quickly as one would like, especially with public health care. I also know there are many more people out there with much worse medical problems than my own. How selfish we (and by we, I mean I) often become at times.


Christine said...

Yes, Advocate for an appointment soon withan endocrinologist. As you have said, crises can happen and I am sure you would rather avoid that. (wasn't it the steriods that helped when you were hosptalized?). I would think that there would be some treatment for this issue once the right doctor determines how much your body is producing and supplies the rest artificially. Look for hope in the fact that this seems to be something "treatable". Hope can dissipate anger and frustration. Remember that nothing is impossible with God, including getting an appointment quickly,(my prayer for you)

Hope this can be taken care of quickly so you can the wife and mother you want to be!! Just wanted to encourage you!!!

Joshua 1:9 "Have I not commanded you? Be strong and very courageous. Do not be terrified: do not be discouraged, for the Lord your God will be with you wherever you go."

Lovingly, Your cousin,

Christine Wiebe

Jennifer Thompson said...

My prayers are with you. Your strength is an inspiration to me. Keep pushing for an appointment and a referal. I know that wading through our health care system can be very difficult. Hang in there. Call your provincial Health Minister's office. They have aids that will give you contacts that you can call and these people will help you wade through the health system and get the appointments that you need in a timely manner. My husband is one of these people within our province and he has helped countless people get through the chaos of the health system. Hang in there. Good luck and God bless, you are in my prayers, both you and your daughter.

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