- Im 21
- Live in London but go to uni in Manchester
- Study Theological Studies in Philosophy and Ethics
- Want to become a qualified teacher (primary/elementary level)
- Am the youngest of four (a brother and two sisters)
- I suffer from a condition called Elhers-Danlos
- My Mum is a big nosey nurse
anndddd I think thats all the relevant information you need to know about me to understand the upcoming life posts.
SO. I'll start explaining what has happened so far at the beginning... it's quite long winded and involves a lot of non Cushing related tests but its funny how it all pans out.
I've applied to do Camp America next year (always loved working with kids, never had the chance to travel the US, right up my street, really), and to finish off my application all I need is to make a cringeworthy video and for my medical form to be signed by a physician. The doctors are pretty useless in Manchester because they have so many students to cater for that they don't really seem like they tend to care and are more interested in ticking you off the list so they can move on to the next hungover student. So I've stayed registered to my doctors surgery in London (who are always very helpful and I always feel comfortable with). Anyway, so off I trotted to get my medical form filled out and while I was there I thought I may as well get a once over to make sure everything was A OK. Long story short, there wasn't enough time to do all the examinations on the medical form to get it completed and I'd have to make another appointment and go back. Managed to get my blood taken though.
Back up in Manchester now and I receive a voicemail (was being a typical student and sleeping when he called) from my doctor asking me to come in and repeat the blood test because my potassium levels came back abnormally high and he wanted to check I wasn't having any palpitations. In my mind, for some reason I decided to take this as my sodium levels coming back high. Anyway, not too bothered, sodium = salt... I know I like my food salty, he'll probably just tell me to stop eating so many crisps. Back down in London in a few weeks, I'll get told off and do it then. (This was a very misinformed judgement by the way, eating crisps isn't what affects your sodium levels. I have a tendency to make 4 by putting 2 and 3 together.)
The message played on my mind a bit because after he mentioned palpitations I was suddenly aware that yes, I do get palpitations, I just tend to ignore them. So when I got back to London I booked an appointment to get my blood retaken and turned to my ever knowing mother for some health advice. Why do I get palpitations and what do high sodium levels mean? Her being a nurse is always reassuring because she seems to know everything about everything and can almost always answer your health questions. Anyway, so I told her about the test and the results coming back abnormal, but like I said, for some reason, I remembered the doctor saying sodium and not potassium. We Googled what high sodium meant (i know you shouldnt google but i just couldnt help myself) and then we came across our friend, 'Cushing's Syndrome'. When we looked at the symptoms it was kind of overwhelming at how many I fell victim to (I'll write another post about them) and we said yep, right there and then, I have Cushing's, I'll ask to be tested for that tomorrow. Then I went to bed.
The next day before I went to the appointment about my blood tests I wrote a list of all the indications I had of Cushing's to take to hear what he had to say. I turn up at the appointment and he quickly corrects me that it was my potassium levels that were too high and my sodium levels and everything else in between came back completely normal. He reassured me that the chances were I was either dehydrated or the results were spoilt because potassium is an electrolyte and the cells can become easily ruptured in transit, but he wanted to check my blood pressure anyway... High. Way too high for my age.
So alas, another problem! He told me he wanted me to monitor it over the next week or so and if I do have high blood pressure we'll need to arrange to sort that out. Now that discussion was done, I dropped in the mention of Cushing's. At first he was reluctant as he said the condition was 'extremely rare' but I whipped out my list and he caved. After having a little peek at my buffalo hump and abdominal stretch marks he went out the room and spoke to his senior. They both agreed I'd made a strong enough case for them to get some more specialist blood tests done to test my cortisol levels.
I had to get myself in for 8.30am to get my blood taken (because cortisol tests have to be taken in the morning, before or around 9am. Mine were taken at 8:50). For usual blood test results to come in it takes between 24 and 48 hours, but the doctor said that for the more specialist tests it may take a little longer, up to a week. This time next week I'll be in Manchester again! I'm not going to be around to discuss the results if they take a week! Annoying.
Anyway so off I trotted again back home, I guess I just had to sit and wait for my results (whilst monitoring my high blood pressure). During this time I google what Cushing's really is (medical explanations) and it scared me a little... it's more serious than I thought and its made me really eager to find out whether I've got it or whether I'm just self diagnosing and finding excuses for my fatness. Three days pass and even though he told me to monitor it for a week or so all my blood pressure readings have been consistently high, so, I decide to give the docs another call to 1. find out some results (if they have any) and 2. get my BP sorted before I go back up to Manchester.
I got told that my retest was completely fine, the original potassium readings were in fact spoilt and I don't have anything to worry about there, but there was nothing on the system concerning my cortisol tests. They mustn't have come back yet... annoying. After researching it, its the one hanging heaviest over my head. I book an appointment to discuss my blood pressure for 11.20am.
Turn up at 11.20 with my list of high BP readings and they proceed to tell me my appointment is actually scheduled for tomorrow (thanks for the inconvenience!) but they're able to schedule me in for an over the phone appointment at 2pm if I wanted it to do that instead. Yeah sure, doesn't really make a difference whether its in person or not. I left my list with them so the doctor could have a look.
2pm rolls around and I get my call. He's seen my list, he thinks the readings are too high and my BP needs to be managed. When he's talking to me about the particular drug he's prescribing me he mentions that he's spoken with the endocrinologist about which was the best form not to effect further test results. Eh? I thought my results hadn't come back yet! Why would you be talking to an endocrinologist if you didn't know if anything was even wrong? I picked up on it and asked him why he'd spoken to them and he let slip that they did in fact have the results and he didn't know I hadn't been given them yet. My cortisol readings were over four times the maximum average. My heart sank.
He said that he has a scheduled meeting with the endocrinologist to discuss it further on Thursday and will send out a letter (I'm not entirely sure what this letter will consist of). I wish Thursday was tomorrow and I'd know whats going on soon but alas, it's another 5 days, so at least another week of questions running around in my mind whilst waiting to see what the next stage is.
It's funny though, how I've found out about my hypercortisolism through so many accidents and chances. First the random blood test, second, the accidental spoil of results and need for repetition, third, the accidental mix up between sodium and potassium, fourth, the googling on a whim before bed and then the doctor mentioning the endocrinologist. If all of those things hadn't happened I'd probably still be piling on the pounds unbeknown to my actual disease.
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