This is how I feel now…
I have noticed the longer I go without the pill, the less & less sleep I get. I kind of feel like a zombie. I feel like my body is edgy & buzzing all the time because I’m not getting rest. And I’m starting to put 2 and 2 together.
For the final 6 months or so that I was at college I was going nuts because I wasn’t sleeping. Ironically, I had been on the shot for 2 years prior for the final 6 months I wasn’t on it because I saw an endocrinologist who told me to get off of it because it was bad for your bones. I have to admit I never put 2 and 2 together that being off hormones takes away my sleep until now. And now I want to know why. Because really I couldn’t live like this.
So my temper is bad, I can’t sleep, I get super hungry, I gain weight and feel edgy/dizzy etc. Ironically my blood sugar doesn’t seem as bad. I can tolerate a wider variety of foods but when the sugar starts going down a few hours later and I get hungry, I’m more ravenous and desperate. The same things that happen when I am off that beta blocker. I started thinking what do these 2 drugs have in common? What part of the body would they affect or slow down? Of course the thyroid would be one part, but there’s nothing that can be done about that so it doesn’t really matter. The only other part I can think of is the adrenals. I’ve thought of going back into my dr. and explaining what I’ve noticed but I think it could be a big waste of time.
Afterall, as soon as I get my closing $ and that birth control pill in my hot little hand it will be in my mouth so I can sleep again. I can’t wait 6 weeks for them to order some test a you have to get an injection in the hospital to get some result (and that’s assuming that they would even want to do the test). So this is upsetting because I’m realizing that I may never really know what’s going on. It’s complicated. But then again I need to start sleeping good again, immediately.
There’s a reason why I’m wondering about all of this. A few months ago I saw a show on tv about a woman who was diagnosed with PCOS but really had something called Non-Classical Congenital Adrenal Hyperplasia. Basically it’s an adrenal problem that causes all the same symptoms, even the polycystic ovaries. But I’ve never been tested for it and I don’t think most people diagnosed with PCOS are tested for it either.
Over the summer I did an open house for an OBGYN. Ironically she had a book laying out about PCOS. My open house was slow so I picked up the book and thumbed through it- looking for any mention of this other problem. And I found it. It said that in order to be diagnosed with PCOS, a dr. is first supposed to test for the NCAH and rule it out. But I don’t think this is being done for most people. Quite upsetting.
This is how I felt a few weeks ago…
I’ve been off the pill for weeks now. I don’t have the $ to get a refill until I get my closing. Meanwhile, I have steadily felt the testosterone climbing. I pluck my chin almost every day. I have a few zits now. I seem to get crazy pissed about the tiniest things. All of my emotions feel like they are on edge, like I am feeling things way too hard. Plus I have a sex drive again.
Then I remember that I was off the pill that last summer at college and I was crazy then too. I remember feeling bad and being on the phone one time with a friend & crying my eyes out. Totally abnormal for me because I hate crying in front of people. So anyway, I have connected the dots & put 2 and 2 together. Hormones are nuts. This is why guys on steroids get more testosterone and go ape-shit.
the chicken or the egg?
I don’t know what to blame more, or what to focus on. I still often wonder is it mainly the blood sugar causing me grief and how much does the thyroid even play into it. I wonder because: today I’m working a 7 hour shift at the model home. I brought tabbouleh for lunch and triscuits and pecans. But after that I was majorly dragging. Just wanted to nap. Then I was starving. I knew this health food wasn’t doin it for me. I need grease, bad. So I went and got a happy meal.
This reminds me of a specific memory. It’s freshman year in high school. The day of a cross-country meet. The coach told us not to eat greasy food because it would make us sluggish. I decided to try a pizza hut pan pizza and see what happened. I ended up shaving 4:55 minutes off my time. Now, I don’t think this would always yield the same results but I just can’t figure it out. Like sometimes I eat mcdonalds fries and get blurry vision and a slow stupid mind. Other times it fuels me for hours and I feel great (like if I do that for my first meal of the day.) There just seems to be no rhyme or reason to how I use food. That tabbouleh was working out great for the last week, until now.
Then there’s another question. The fertility place says that thinner people get PCOS from being high school athletes because that caused them to have too much testosterone. But then they tell us to work out all the time, so I’m confused. Like doesn’t that have to do with why I have the problem in the first place? I also keep drinking iced tea to get some energy during the day. I feel more hypo in general but who knows. None of what’s going on is making sense. It seems like my body craves fat as a fuel, and when I eat super healthy it just backfires.
Frustrated
So I went back to my dr. today since she had taunted me in the past by mentioning doing a “permanent solution” for the Graves. But this time she just acted like there’s nothing that can/will be done. As long as the labs are normal nothing. It doesn’t matter if you have the eye disease, a goiter & the symptoms.
Of course I got really upset and explained that I see this as an autoimmune disease with antibodies that are making me sick and I could care less where my labs fall, I’m sick of dealing with it. So she’s doing the bloodwork again. Whatever. And she basically said the antibodies will kill the gland off over time. Who cares? Why should I have to wait as my gland slowly dies off and fights back over and over?
She then once again mentioned that I might have another autoimmune disease too like Sjogren’s. Which she had mentioned last time. And I asked her if she had done any tests for it because last time she said she would. But last time my ANA was retested and was no longer positive so she said they didn’t do further tests since it would be rare to have it without the ANA. The ANA are the lupus antibodies but they’re present in other diseases. I’ve always thought that could be a possibility but even when my ANA was really high and I was carted off to a specialist it still wasn’t high enough to be lupus. And when further testing was done at that point it didn’t show signs of specific other diseases. So I’m beyond fed up. I don’t understand why this is a disease that is written off. Like you’re supposed to just live with it.
Even if I had another disease too, some of the symptoms of Graves are too specific to blame on a second disease on the side. Getting overheated, red face, anger. Blah, blah, blah. And since I told her my eyes have been gritty and hurting lately she just talked about eye drops. This recommendation NEVER sits well with me. It doesn’t provide much relief. I have only found eye pain relief from taking BUGLEWEED. My experience has been that you have to go against the antibodies, not pour drops in your eyes and expect them to feel fine.
Maybe I will have to try to scrape together $ and go back to acupuncture, it sounds like it may be my only option. I might go to a guy my massage therapist friend knows since he’s way cheaper. In a way, I wanted to see from this appt whether to try to get help from western medicine and now I’m like, well I guess I got an answer on that one. I do’n’t know how to change this into a disease that drs actually care about and will do research & case studies to be able to treat a plethora of different cases. Because no 2 people with 1 disease will be completely alike.
Still Going
Well I still haven’t made any money recently in real estate so I haven’t been to acupuncture in forever. But I am still doing way better than I was before I ever started acupuncture. My main issue lately has been that I get a second wind late at night and don’t want to go to bed. Then I’m supposed to get up in the morning and I feel dead. The other day I fell back asleep after my alarm went off. Same old song and dance. But luckily I got up in time that no one at work noticed I was late.
I took a waitressing job 2 shifts a week to try to have some money coming in. And this is something I wouldn’t have done when all my symptoms were out of control.
Mainly lately I have been more focused on trying to figure out what to eat for my blood sugar. I’m going to go see a dietician on Tuesday. I’m interested to hear what she will say about wheat. I told my doctor that it seems I have experienced swelling & weight gain since eating wheat again. She said it is just because the gluten-free diet is so restrictive. But I have to disagree the more I think about it. Because it wasn’t as extreme as a no carb diet. I still ate banana bread muffins every morning that I had made with gluten free flour. I ate gluten-free crackers and cookies, pasta. I ate potatoes, rice, potato chips, corn chips (all bad for the blood sugar). And I was super thin. So I think it’s the wheat, not that’s it’s restrictive.
I also got sick of all the side effects of the various birth control pills I had tried to help manage my PCOS/endometriosis. I couldn’t find a happy medium. My dr. kept suggesting the Nuvaring and finally I gave in. Apparently it has the lowest dose of estrogen (and estrogen has had bad side effects for me). Well, I still felt sick like I had turned green or something during that special time of the month. I remembered that she had told me that she had endometriosis and she wore her Nuvaring continuously and just opted out of the periods. So I tried that last month and it worked.
And I just now realized that for once in my life I haven’t really been craving chocolate. Usually I think about it a lot and go to the drug store to buy different kinds. So that’s interesting. But I still feel rather dry & asexual so I don’t know what i will do in the long run. They can’t seem to offer me any explanations or other alternatives which is annoying. You would think that if they know what hormones you’re lacking and what you have too much of, that it could be easily made up for, but I guess not. Even when I was on the progesterone only pill I had some good side effects: (didn’t feel asexual or numb from the waist down. less facial hair) but the bad side effects of horrible cramping and not being able to cool off all day outweighed the good side effects.
slacking off
Ok, so I’ve been a slacker and haven’t written all summer. Well I was doing pretty well for a while. But then I was at a turning part in my job. (I was at a small realty company not feeling like I had the proper training and making no money.) So I switched to a large real estate company that offered training. Meanwhile I have run out of money and quit going to acupuncture because I can’t even keep up with my bills. I can see that my health has gone downhill some but I am still way better than what I originally was.
I also ran out of my beta blockers for a while and that was crazy. Just about anything could make me cry and I felt really edgy, nervous and like I wanted to punch things. All of this was familiar to me since I used to feel like that before I was ever on the beta blockers. But I had to respect myself for being able to live like that day in & day out for years. It was infuriating to walk up the stairs in my house and have my heart doing 120 and just feel like I needed to take a nap from going up the stairs. So needless to say I am so glad to be back on the beta blockers.
I went back to my dr. that I see from the city healthcare program. And ironically after wasting all of my money the last few years trying to find that special dr. that understood what I was going through, I realized now that I’m on a government program I finally have that dr. Irony. She said that we might be able to look into the permanent options. (No one has ever said that to me.) I told her how my feet are puffy all the time and she said that that is related to the Graves & she mentioned the pretibial myxedema. (No one had ever mentioned that either.) She even talked about getting me in to see a dietician who could navigate my sensitive stomach combined with the blood sugar problems. And she may send me back to an opthalmologist to make sure my eyes are still ok. So I was very pleasantly surprised. All she wanted to talk about was my Graves. Every other dr. I have ever seen has acted like it must not be that big of a deal and they try to make up all of these other possibilities like IBS or fibromyalgia, all the time ignoring the white elephant in the room.
I also in my mind had wanted to ask this dr. if my dryness “down there” could be Sjogrens since I do have a positive ANA. I mentioned the dryness and she asked if my eyes, mouth, and nose were dry. I said yes. So she said she wanted to test for Sjogren’s. Who knows if I have it, but at least she is always trying to figure things out.
the latest appt
at the last appointment, for the first time I really didn’t have much in the way of complaints for her to work on. Maybe that I was emotional but that was about it. Since then, I got super emotional over some jackass and my gland immediately swelled right up again. It looks like I have a double chin and I’m not even chubby really. So I could immediately see that there is a strong connection between controlling your emotions and managing your thyroid. I’m thinking about getting involved in some meditation/buddhist groups here to learn how to keep myself calm even when people hurt my feelings. At least, that’s the goal.
Also at that appt while the needles were in I thought “my acupuncturist has done so much for me. she has given me hope and a better outlook when everything seemed so dark for so long and it felt like there was no end to my problems. what can I do for her?” of course I thought about writing a testimonial. so I told her that on my way out and she just lit up. she was so happy and grateful. I’m thinking because she seems very humble, that she would never ask someone to write one, she just waits for them. and I thought mine would make a difference since it’s for a disease and most of the ones on her website are just for one complaint like headaches. so she said the next appt will be free if I bring it with me. I just really want to spread the word, that even though I still have hard days. and lately I’ve had a rougher time getting up the stairs (but I’ve been forgetting to take my herbs) things are way better and way more manageable than what they were before. it’s lightyears apart.
I also forced myself to run 2 miles a few weeks ago. the last 2 laps were pure agony but it made me feel strong to be able to say I did it.
blood sugars and hormones and heat – oh my!
I’m sorry I haven’t written in a while. I was in the midst of a job transition. And still am. I’m finally doing real estate full-time. Now when I get home I’m not usually as stressed out so I feel like I have free time and I need to get a life and socialize more. The weather has gotten much warmer and I am already freaked out by it. I’ve worn shorts the last 2 days and to me it’s on the edge of comfortable. I really don’t want it to get any hotter. But I know this is nothing compared to summer. And it’s weird because I used to be so unphased by the heat. In fact, I loved it. I remember laying on a hammock in the summer with a bath towel on top of me, sweating mildly and loving it. But now I can sweat when it’s not even humid out. But today wasn’t hot. It was comfortable. I’ve also realized that mentally I’m in a much better place with acupuncture, but I still need to be careful in terms of realizing that I can get overheated and dehydrated very easily.
I also finally purchased the Pines Wheatgrass Powder at my healthfood store. I like that it mixes in water pretty well. I’m not going to lie and say it tastes like a candybar. I mean it tastes like green. Grassy green stuff. But I’m excited about any product that will help me get more greens in my body. Plus, when I used to see the herbalist, part of her treatment plan for hyperthyroidism was me drinking chlorella, which is a freshwater algae from Japan. It’s supposed to detoxify the body. But this stuff didn’t mix into drinks at all so you had to blend it every time (and clean up the blender) and it was much fouler than the wheatgrass. You pretty much had to blend it with a banana and the milk of your choice just to get it down.
I went to my fertility specialist the other day to get her to let me try a different pill and see if she had any new thoughts on the yeast beast. Of course I’ve been using these tea tree suppositories so that made everything look perfect. So she still doesn’t know for sure if it even is yeast, so that was irritating. But she did ask me if I was diabetic. I said “I don’t think so, no one’s ever told me I was.” Then she asked more questions about my fasting blood sugar. I said “well, it’s always been normal. I first got diagnosed with having low sugar and I do have some high sugars after I eat, but the fasting is always fine.” Then she said that I may want to have a glucose tolerance test because I obviously have a problem and could be diabetic since I hadn’t had that test done.
She pointed out that thousands of people are diabetic and don’t know it. So that really freaked me out. I had figured from the way I felt that my body would go diabetic in maybe 10 years, but she made it out like it would be much sooner than that. I was shocked because I have a blood sugar tester and I didn’t think my numbers were bad enough, often enough to be diabetic. But I can see her point. If they make me drink a ton of sugar on an empty stomach, my sugar could go high enough for me to be called diabetic, because my body can’t control itself. I just didn’t know you could diagnose diabetes that way. I thought it was ONLY if you had a high fasting, meaning that you wake up with it already high. I think it will be a while before this test gets scheduled. Because I don’t have insurance so I will have to have her write a note that I need it. Then I will have to go get an appt with the city health people and see if they will give me permission to get it done. Then I may be waiting for a month to even get it scheduled. So who knows. Unless it’s not very expensive with her people.
Then that very day, I got home and ate a bowl of pasta and meat and ran around the block twice. By the end I could barely lift my legs up and then I felt really dizzy, shakey and like my vision was kind of blurry. So I figure it had something to do with the blood sugar. Maybe I burned through too much sugar too fast? I’m not sure, but it aroused my suspicions even more.
I also talked her into letting me try a progestin-only pill. And I’m not sure if that’s a good idea. She doesn’t think I will like it. But I had read that people with PCOS are lacking progesterone, not estrogen. And I also feel like the combination pill makes me kind of sexually numb from the waist down, to some extent. I also wonder if it has anything to do with me feeling dried out like an old lady and having this nonstop yeast beast. It does say in the package insert that it can cause yeast problems, so I figure may as well take it out of the scenario. But then I read up on progestin only pills and it said they can cause hair growth on the face and acne, 2 of the symptoms of pcos and too much male hormones. So I hope progestin is not derived from a male hormone. I’m pretty nervous about trying it. Even though I was on the shot for 2 years and loved it – even though a few endos told me it was horrible and to get off it asap. Oh well, I’ll keep you posted.
the latest
well, I still can’t seem to get caught up on my bills, even since I’ve started working full-time again. I’ve been toying with the idea of going with a less expensive acupuncturist since my Massage Therapist friend knows of one. I feel bad even thinking that though since I really like my acupuncturist and feel like we have a rapor and I want to be loyal. Plus, she worked at a hospital in China. But money is an ongoing problem with me, so we’ll see. I would at least find out if the same herbal formulas are available at a different place before I would try a new place out.
I still don’t sleep much during the workweek. I am not a morning person, nor do I ever really want to be one. I have to be at work at 7:55 and I usually get there at 7:58 which is already a problem. I’m hoping I can save up money and jump into real estate full-time at some point, but I don’t know how soon that could happen. Things keep coming up. At least with real estate there are no rules about what time you have to get there or anything like that. (Well, at my company there aren’t).
I went running in the woods at that park earlier this week. I figured out which way to go so that I wouldn’t have to really do any uphills. So I did the whole loop and it probably wasn’t too far but I felt proud of myself. But for me running in the woods is way easier than on the roads. I still hope to do a 5k at some point but feel no immediacy about when. Since I felt bad that one week when I ran 2 days in a row, I’m not pushing myself at all. Once a week or so is fine by me. A girl I work with is going to walk a 5k in a month or so and her saying that got me thinking about it more. So who knows. But my muscles have been hurting a lot lately. Not because I did anything. Just because I guess it’s a part of the Graves. My dr. had suspected fibromyalgia at one point because I have Lupus antibodies and I had a high sed rate once. I’ve been sent to rheumatologists twice and they just said it was the Graves that causes those labs. I do think I have some kind of chronic inflammatory issue going on from the Graves and the achiness has been bothering me lately and freaking me out, considering that I’m in my twenties. It makes we worried about what it might feel like when I’m actually old. But I do still have hope that things will come together one way or another. I feel like I have new weapons by looking outside the box.
I also came across an interesting tidbit online yesterday about PCOS. If you go to the wikipedia page on it, at the bottom there was information about a supplement that supposedly treats all of the problems by fixing a missing link in the insulin process. It looks like there are actual published studies on this substance and it really does work, the problem is that it is pretty much impossible to get in the U.S. But I guess there is a similar supplement available. I may try it at some point, because I am getting more and more fed up with the PCOS options that are out there. I always think,”Who has the money to take Metformin and end up in the hospital all the time from the side effects?” Not I said the little red hen, Not I.
I also always feel the weight of that stigma, where they say that people with blood sugar problems/diabetes got it because they gained weight and didn’t take care of themselves. I constantly see this message all over magazines and the media and it makes me mad and I feel the unfairness of my situation. I loved working out and suddenly had to stop from being so weak from the Graves/blood sugar problems that came on at the same time. I hate the diabetes stigma, I think it’s an unfair message to be propogating. Instead, we should talk more about having a food supply that is closer to Canadas. Take out the MSG from our Campbells soup, our chips, our sausage and everything else. Take out the corn syrup, the excessive salt, the preservatives. I think it’s not that people don’t try, it’s that in America our food supply is basically tainted.
Prime example. My mom had a Curves magazine and I was reading it. They were saying not to eat corn syrup – it makes you fat. Well, well, well – and what do we have in Curves cereal which claims to make you thin? …..Corn Syrup!!!!
More running, less acupuncture
I went running twice this week. I went to a local wooded park that I had been to once before and had a weird experience at. The experience had left me thinking that these particular woods were “haunted” or had some kind of supernatural thing going on in them. But a friend had told me that she goes there and didn’t experience that. So I decided to check it out again. I didn’t experience anything super scary. I forgot how hilly the place is though. I don’t have the strength to run up those hills so I would run a little walk a little. And I felt stronger for being out there. But every since my shoulders and back have felt really tight.
It seems like it’s been forever since my last acupuncture session and I can definitely tell a difference. Last week I didn’t sleep much because I was always still wide awake at 1 or 2 am. Plus like I said, you feel weaker and sore when you wake up in the morning. At work I keep forgetting things. I get paid this next friday so I will try to see if I can get an appt on Saturday.
I also had run out of $ and subsequently gone off the Pill for 2 weeks. My gyn had said the pill wouldn’t have much effect on my blood sugar, but I think it really did. Because there were a few days where my hands were shaking pretty much the whole day. And I have had a much harder time regulating the sugar since then. I have been catching myself having high blood sugar a few times. I have been back on the pill for 5 days but am still not feeling back to normal. I don’t know if the pill was helping me before or the acupuncture. I also still want to try a progesterone only pill. My gyn is against this because she says a lack of estrogen is what causes dryness “down there.” But I found a PCOS message board and a lot of people said they didn’t have dryness UNTIL they went on the pill. Which seems to be the case for me. It also pointed out that some people are estrogen dominant, meaning they don’t need to take more estrogen. I don’t know, maybe the progesterone only pill won’t help me – but I think it’s worth a try at least.
PCOS, Graves Disease & Acupuncture 