unico_love: (red rose girl)
I just got back from the doctor's appointment. My doctor is East Indian and very pretty (Michael agrees!) She was nice, but didn't want to get my hopes up. She thinks my high prolactin could be caused by Zyprexa (bitch endo said my levels were too high for it to be meds). She wanted to see if I could change meds and get off Zyprexa. I'm like... That always ends in a huge disaster>_> I get TOTALLY nuts! I've been on almost all the alternatives and nothing else works. And I still have the same symptoms. I just realized I could test going off the Zyprexa for a couple weeks or a month, especially now I'm off Yasmin, which made me bonkers as hell, just to check my Prolactin without it. Maybe I will do that if my prolactin doesn't decrease substantially on the anti-Prolactin med. I wanted to just stop taking Zyprexa now, while on the med, but that's too many variables. But this all made me very disappointed because I've read so much about hyperprolactanemia and how it can cause many, many symptoms -- all of which I had. My doctor focused on the irregular periods, which I've had all along. And which I really could care less about. A few periods a year is fine with me! But she tried to get milk from my nipples and couldn't, which you usually can with prolactanemia. She read off a chart of symptoms for me to say yes/no to, and I said "yes" to most.

Interestingly, she seemed more concerned about my cortisol levels. She asked me if my (normal) urine test was before or after my cortisol dex suppression test (borderline high). The urine test was after, which she said could be because the steroids in my suppression test. Also I'm on inhalers (steroids) which can suppress cortisol. So she wants to look into that more. She even felt for my hunchback for Cushings, I think! But if I have Cushings it's either a mild case or the beginning stages. And I'm much rather have a prolactinoma:( Everyone says "Oh, it's good you don't have a tumor!" A small adenoma that shrinks and all the side effects go away with a simple med is better than all this other crap!

She said doing bone density testing on pre-menopausal women was complicated and rarely done, even if there was a fracture, and osteoporosis was not usually associated with pain. Then why do my hips hurt so much?? They hurt both while I was very active and non-active. But I'm not going to push for a test that's not going to show anything.

She basically wants to start from scratch and do retesting of thyroid, cortisol, and prolactin in a couple weeks, with me off steroids (trying not to use my inhalers). Then in three weeks, see her again. Then we will go over the results and plan the next step (maybe go offf Zyprexa, plan the next Cortisol tests, maybe sex hormone testing, maybe look into what could be causing my body hair loss, etc.) She said she had to look over my file more and other information. I really hope she studies up on prolactanemia and the kind of symptoms it can cause (same with high cortisol and anything else I might have) because I feel like my symptoms can be explained... I feel the body hair issue is definitely endocrinological, so as long as I've got that going I've got her hooked :P
unico_love: (crystal ball)
Just got back from the doctor. She was very nice, but basically has no idea what's wrong with me. She's not used to patients with high prolactin, high cortisol, loss of body hair, early onset bone density issues (at least, she never has been the one in charge of dealing with it), etc. She definitely thinks the cause of the prolactin needs to be found because my levels are so ridiculous. There are two endocrinologists in our medical group -- an older, more experienced man and a young woman whom everyone reported back about positively and who is very good about contacting my doctor's office about how things go with patients.

I decided on the female due to the fact that she may be more up-to-date on new medical information, I'm more comfortable with female doctors as far as this stuff goes due to my PTSD, she probably wouldn't have as long a wait (I was told), and just a gut feeling. It turns out she did her fellowship at Mayo Clinic! She also has only been in practice 1 year! To me that's like a kid! But it should relax me. Also I'm hoping that means that, just starting her career, she's eager to prove herself, energetic, not full of herself, etc. Now, I had the *opposite* of this experience with a male doctor (psychiatrist) just out of med school who was first in all his rotations. Oh my gosh, that was bad. So I don't know why I think this will be any different and she won't just think I'm a hypochondriac. I just have a good feeling about her...

And, shockingly, there was an opening at 1:30pm tomorrow!!! The staff member I made an appointment with sounded shocked, too! Heh. So hopefully luck is on my side. My doctor wanted the endocrinologist to do the bone density test because she (gp) wouldn't know what she was doing, but to come back to her if the endo refused.

And my nightly cortisol (or whatever it is) rush has kicked in. Totally anxious and racing heart and shaking. Took Klonopin and Atarax and will see if that slows things down.
unico_love: (Hotaru with umbrella)
No news on the MRI yet. I just got called about my *urine test* from awhile ago. It was normal. But that is the most unreliable of the tests, often giving, not only false negatives, but false positives. I'm going to have to fight her for a late nigh salivary test for Cushings. Also she said I didn't need a bone density test even though high prolactin and missing periods puts you at high risk for low bone density, regardless of the MRI results. I asked the office worker I talked to to ask the endocrinologist again. If she says no, I'm going to ask my regular doctor for a bone density test, or even my psychiatrist. I had to get my testosterone test from my psychiatrist. Which I still don't know the results of because he's so busy and I haven't seen him since then. I did try to get those results sent over to my endocrinologist *I think.* My memory is horrible now. But I think basically all my hormones were low but cortisol and prolactin, so I'm not surprised the endocrinologist hasn't told me about it, if she did get those results. I don't like my endocrinologist. I want a doctor that wants a lot of testing. I'm going to wait until I get my MRI results back, then push for more Cushings testing. Or if I just get a chance to talk to the doctor. Hopefully something showed up on my MRI and I can see the doctor soon and get all this stuff straightened out. I might need to go to a specialist, anyways, so all these issues would be handed over to them. If that's the case, no point in trying to find a new endocrinologist. Best just to stick this one out.

Sick a Flu

Apr. 1st, 2013 09:20 pm
unico_love: (crystal ball)
Well this weekend wasn't the greatest. Saturday we had Cory, Kat, and Kat's husband, Chris come over. But that was later in the day. Earlier in the day I sat around as lazy as I usually am. And it was nice to see my friends, and we had pizza for dinner, but I couldn't tear my eyes away from the computer while they were watching bad old B movies. And then I started feeling more ill. The tickle in my throat from that morning was followed by a full-blown sore throat, aches, and chills. I eventually went into my bedroom to type more privately, and stayed there the rest of the night. Eventually, I couldn't really move, so a shower wasn't an option. I stayed fully dressed and Michael gave me my night meds. I didn't wash my face or brush my teeth. I couldn't sleep. I took way too many pills (not going into detail here because it might trigger people with suicidal ideation or whom have attempted suicide on pills in the past). But it makes me more sure than ever I have Cushings, considering how many pills I was taking (not a ton all at once) and how they didn't make me sleepy. I must have a ton of cortisol still running through me at night. I am going to demand the late night salivary test for cortisol.

I eventually fell asleep and spent the rest of the day in bed, in bad pain, including in my fingers and toes. I got myself propped up at 6pm and Michael gave me the computer. As the hours wore on I did better and better and eventually showered. I slept last night. I woke up today still feeling ill, but not nearly as bad.

Michael and Dan went to Chicago to see the moving From Up on Poppy Hill, but I didn't feel well enough to go. I still feel sick and weak. We also called the scheduling center about my MRI, but there are no sooner appointments available. We left a message for my endocrinologist about my bone pain and asking for a bone scan. Didn't hear back from her today...
unico_love: (Default)
I feel really fuzzy right now, like I had a seizure or might have a seizure, so bear with me. But I've felt like this for awhile, so it could be a false alarm. But the neurologist doesn't think I'm aware of a lot of my seizures, so who knows? I'm confusing myself. New topic.

We went to Oakbrook Mall. Michael was irritable some of the time, but I'm glad we went! I didn't realize they had some great stores there I would actually use! Maybe it's because I've grown up a bit and some of my tastes have changed? I try to use more environmentally sound products, cruetly-free, if at all possible. Some of the clothes I like are more mature. I spend more on products and am consciously trying to buy less plastic crap.

Anyways, I have been planning on buying Izzy and myself Bare Escentuals lipstick (two a piece) online -- but there was a boutique there! Unfortunately, it didn't have all the lipstick colors. And apparently they are changing the lipstick shades April 11th. I have to wait until April 3-4th to afford the lipstick. But I decided I want to buy the "old" lipstick because then it will gone for good, and we'd have plenty of time to buy the "new" lipstick if we wanted to. A color Izzy was interested in, but was sold out online, was in the boutique -- Berry Glace, so even though Izzy hadn't made her second decision (she had decided on her first -- Italian Ice) I bought it for her. On our way back out of the mall, Michael bought me a Bare Escentuals lipstick in Parfait. It's a little peachier than the color I was considering (Gelato - more straight nude pink, though Parfait is also a nude on me).

We went to Sephora and it was a full one, with the Jasmine line. I looked at the Urban Decay things. It was a bit squashed by the beauty chairs area, though, so I couldn't tell if they had palettes besides the Naked ones. I want to buy Michael's sister an Urban Decay palette for Christmas if I can afford it -- the Vice palette if it returns. I have it set to tell me by email if it returns online. I liked looking at all the different skin products and make up... But I'm broke, so I didn't buy anything.

There was a Soma there, and I love their underwear! It's so pretty and comfortable. I should buy my mother some from there sometime. I bought mine online and had to pay a lot in shipping. Now I know there is a brick and mortar store nearby.

There was a Disney store! All the Disney Stores seem to be closing...

There was an H&M! We don't have one at the mall we usually go to, but I love this store, and they don't sell online. I bought my mother her Mother's Day gift her -- a blue sweater for $10. They always have great pricee, plus now they are selling spring/summer clothes.

I tried to send something to the Glen Ellyn Post Office by Newton Park and they gave me trouble, like they always do. It left me very agitated. I hate that post office and do not intend to use it for packages again. Today Michael mailed my package from the downtown Glen Ellyn Post Office without any problems. I've got a big package I'm putting together for Poland to send out mid-April and will probably use that post office. Michael had a good experience.

I'm still having anxiety and taking 2mg Klonopin everyday, but I'm trying to feel less guilty about that, because my endocrine conditions can cause severe depression and severe anxiety (as well as irritability and hostility). I figure once I'm treated I will start feeling better and not be so med-reliant. I have been obsessed with Cushing's Disease today. I'm pretty sure I have an early/mild case of it starting to progress pretty fast. My weight gain hasn't been in the usual places for me (thighs, for instance), but my belly, in a pregnancy-type fashion. It has cellulite over it. I can't fit into any pants -- including new ones I bought for weight gain -- so I'm going to just wear sweatpants, pajama pants, and elastic waist skirts for the time being. Everyone assures me when I'm treated my body will go back to normal.

My breasts are getting big, too, but that doesn't bother me as much:P I'm wearing one of my new (ebay) bras today, too and yet I'm now getting quadboob from this too(28DD, could use a 28E -- for some other companies I would need a 28F). Hahaha, yes, laugh those who knew me as a college freshman! 4'11" and an A-cup! Well, not really -- just wearing the wrong bra size, as most do (more like a 28C). Anyways, I am not fat, I do not think any of you reading this are fat -- it's just my fat deposits are going to my waist and boobs only because my body thinks it's having a baby very soon and needs to be lactating. I read yesterday, though, that people like myself wtih very high prolactin levels often *don't* lactate -- it's the low-highs that do. Which doesn't make sense to me, but whatever.

I might start getting the Cushings stretch marks soon, which I dread. You can always lose weight -- stretch marks are another issue all together. And my face may become rounder (that's another weird thing -- usually my face gets rounder as I gain weight -- my face is not the slightest bit rounder/chubbier from when I was 25lbs lighter; I'm 5'1", so that's saying a lot). I've been playing with make up a lot and taking lots of face pictures and posting my favorites to Facebook. It sounds vain, but that's one of the few areas of my body that still feels "normal." And that I still feel I can make pretty. It reassures me that this weight gain is not normal because, if it were, my face would look chubbier.

I'm very anxious about the fact it takes many tests to diagnose Cushing's, and then more tests to figure out where the tumor causing it is located (and then you usually do surgery and you have to find a good surgeon... Luckily I live in the Chicago area, so I'm sure there would be an appropriate surgeon not too far). Usually Cushings is caused by a pituitary tumor. I *also* most likely have *another* pituitary tumor -- a prolactinoma releasing way too much prolactin (hence the boobs and the belly and the associated emotional pseudo-pregnant bullshit). That would be treated with strong meds to shrink the tumor and lower my prolactin levels. Two tumors. Two conditions. Two treatments. Two hormones (Cushings is too much cortisol being released from the tumor). A lot of overlapping symptoms -- including osteoporosis -- I want a bone scan asap, because my joints and back and hips hurt a lot the past few months. I will call the endocrinologist about that on Monday, and if she doesn't do anything, call my general practitioner (who works very close by) and ask for a bone scan. I also should go to her office and have my records transferred to her so she knows what's going on. Maybe I will even make an appointment with her. She works Mondays, Wednesdays, and Fridays. My endocrinologist is also part-time. My psychiatrist is the one who has my testosterone results, but I think my endocrinologist got them from him, and those were the most important ones. It's just having two possible conditions at once, with pituitary tumors involved, is overloading and confusing. Though I like that they could explain most of the problems I've gained over the past decade.

On a happier note, Michael went out with Dan and brought me back a large-ish vinyl figurine of Fluttershy from My Little Pony: Friendship is Magic. Though I do have too much random "junk" as it is@_@
unico_love: (Default)
Today I went to my neurologist. They took me on-time, no wait at all. However, I was in the appointment for over an hour. They tried to get the labs from my endocrinologist. The nurse practitioner was a bit annoying... She insisted I had low cortisol because I had low cortisol from my March 2012 lab. I have high cortisol according to the past couple of months. She said I couldn't have a pituitary tumor because none showed on my summer 2012 MRI. I asked the endocrinologist the same question and she said pituitary gland tumors don't show on those kinds of MRI's -- she has to do a "different, deep pituitary MRI." The nurse practitioner asked if I drove (no), if I worked (no), if I cooked (no), and then she asked "Well, what do you do?" to which I didn't answer. Because I've had 3 seizures (1 tonic-clonic in my sleep, 2 complex-partial) seizures since late November, that means my seizures aren't completely controlled (though it's certainly good enough for me), so the nurse practitioner wanted to add Keppra to my Topamax. At least if they had to add a drug I'm glad it would be that one. I've been on it before for Bipolar and I don't get "Keppra rage." The doctor disagreed, though, and just increased me to the maximum amount of Topamax. He also tested my blood levels of Topamax today (which I did right after the appointment, in the hospital). I guess they were also concerned that I was having more seizures than I was aware of; it is possible, given I had several seizures on my 24 hour eeg and I wasn't aware of any of them.

The nurse practitioner *did* say that if I have a pituitary gland tumor, she can't guarantee that after it's treated my seizures and migraines will go away. That's okay, but the fact that *maybe* they will is encouraging! The fact that once the hypothetical tumor is treated I might be much more emotionally stable is even more encouraging and exciting! And even if they don't find a tumor, I will still be treated to lower my prolactin, which should greatly help me emotionally. As for the cortisol, that's still all up in the air. I still think they are testing me for Cushings and I don't know how long that will go on for or what will happen if I have it. That's scarier territory. If I have it it's in the early stages, whereas my prolactinoma (tumor secreting tons of prolactin) might have been around since puberty, just getting worse and worse, adding more and more symptoms. One of the major symptoms is irregular periods, and my periods have been rare from the start. My bipolar, anxiety, and seizures (not tonic-clonic) began around age 19. My libido and ability to orgasm ended in early 2005. Sex became more painful in late 2008. I gained weight suddenly late 2011 and my depression worsened then. I attempted suicide spring 2012. My daily migraines, fainting, tachycardia, tonic-clonic seizures, and weakness began spring 2012. I gained more weight suddenly in late summer/early fall 2012. Sex became even more painful. My vision sometimes started getting more blurry and I started getting headaches sometimes, though not migraines. I grew more weak in 2013, back like how I was in the summer. Since going off my birth control pills in mid-February to test my hormones I have not gone back on it and have not had my period. That was another dumb question asked in the neuro's office "Why aren't you getting your period?" I'd already told them my prolactin is sky-high. My body thinks it's majorly pregnant and/or nursing!

These are all my problems a prolactinoma might account for:
-Depression
-Anxiety
-Hostility
-Irritability
-Suicidality
-Irregular periods/rare periods/amenorrhea
-Infertility (though I want to keep that! No babies for me, thanks!)
-Anorgasmia
-No libido
-Vaginal dryness
-Painful sex
-Vision problems
-Migraines
-Headaches, in general
-Hot flashes
-Cold sweats
-Seizures
-Memory problems
-Bad decision making
-Over-sensitivity
-Physical weakness
-Needing 12+ hours of sleep a day
-Fatigue
-Fainting
-Collapsing
-Dizziness
-Nausea attacks
-Weight gain
-Loss of body hair
-Joint pain, bone pain, and muscle pain
-Hypothyroidism

The one symptom I *don't* have, that my endocrinologist was shocked at, given my prolactin levels, was lactation. I have never lactated, which is partly why I was so shocked to find out my prolactin was so high and wreaking havoc on my mind and body. I remember getting the test order and seeing prolactin on it and thinking "Prolactin? Why is she testing *that?* This is dumb."

So any or all of these things might get better with my prolactin levels controlled! For all I know, I'm not even bipolar! I was stable as a rock, just very sensitive, until I hit 19 and everything fell to pieces!



-
unico_love: (Default)
It seems like I got in to see an endocrinologist just in time. Just a couple months ago I could do an hour on the elliptical. Now cleaning the bathtub leaves me collapsed and hyperventilating on the floor for 10 minutes before making it back to bed. I'm so exhausted and sore and achey. I know lots of people (including here) have chronic illnesses... I will get used to this if I have to, I just am not used to it, and I seemed to get better from this summer by eating meat again and then the past few weeks I've had a downturn. If I stay like this I might call the doctor's office and tell them I've gotten worse, to see if we can move up the MRI.
unico_love: (Delight)
Today was a better day than yesterday, at least. Michael missed his teaching at church and we both slept in. Cory was unable to come over, which was fine. Michael and I went to the free gem and mineral show at the Dupage Fairgrounds in Wheaton. Michael bought 3 carved stone animals -- a bear, a rabbit, and a cat. I bought a gorilla for Cory. I also bought an aventurine for myself, since they should bring good luck, and green moss agate earrings for Izzy. While I was flipping through the pendants on index cards, the first one I stopped at was labradorite -- the bracelet I'd been hoping to buy next month, probably as my last bracelet for awhile. Then I recently had been backing out of it, due to expenses as of late, but now I am more sure I should buy it if I can. Labradorite helps with intuition, seeing past illusions, and is associated with the brain (close to the pituitary gland -- where I'm having problems). Even if it doesn't help on a physical level, it's symbolic.

Then we went to the pet shop for cat food and we went to Aldi for human food. I skipped my shower tonight because my stomach is really bothering me. I keep trying to find information about hyperprolactanaemia, but most of the information is on Trying To Conceive messageboards. I want a board for people that is I Hope The Treatment Makes Me Infertile and Sterile. Also I want to get tested for Hashimoto's and mosaic Turner's Syndrome. I know I was just tested Saturday for Cushing's Syndrome. My endocrinologist seemed to assume I had Hashimoto's because it causes most hypothyroidism, but this pituitary stuff can cause it, too. A friend with Turner's Syndrome thinks I sound like mosaic Turner's and I can relate to a lot I've read on it. Endocrinologists often test it/diagnose it, I guess. So eventually I'd like to see about that.

Tomorrow I'm calling the endocrinologist's office to see if I need a sooner MRI appointment than April 6th because she said "as soon as possible" and that is not very soon. I also have to call my psychiatrist, part of the same hospital and who recommended this endocrinologist, and tell him what's going on.

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unico_love

August 2013

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