Since the surgery my eyesight has been progressively getting worse with blurring, light streaking, and double vision mostly in my left eye. I felt like my glasses under my old script were not helping, though I realized at the eye doctor on Thursday they are helping a little. My doctor informed me that for a year, or longer, certain antibodies from the Graves' disease can be elevated in my body, affecting my eyesight, & there's that possibility it might just get better or it could get worse also. They've done enough they can with the steroids so I've been off the steroid eye drops & in a few weeks I'll be tapered off the prednisone.
I have an appointment next week to check my vision range & get a new script for glasses in which I will need. He said the lenses need to be, I believe, fragmented and there's a possibility the lenses would need a new vision script every few months (depending if my vision gets worse or not). He gave me a few eye exercises to do as much as I can (or when I remember) and I go back in a month.
I left the office in tears because everything seems so uncertain with this. Not only that, but I've worn reading glasses for many years & my vision has only slightly changed. My reading glasses that I got over 10 years ago finally broke 2 years ago and so I got the vision plan through my employment, got a new pair of cheap, reading glasses, then dropped the plan during (what seemed to be a very early) open enrollment last year. A few months later I was diagnosed with Graves' and a few months after that, diagnosed with Thyroid Eye Disease. I do have a discount plan under my current health insurance for glasses but it will hardly put a dent in what this is going to cost me considering I will need both new frames and lenses in which the lenses may need to be changed every few months.
If I know what I'm typing, or have an idea of the subject of what I'm reading, I can make out words though I still struggle. Testing myself, reading random numbers and letters all together is a major stress on my eyes. So, when my job consists of me reading a lot of VINs, phone numbers, e-mails and It's not like I can re-program the systems used to make the fonts super large so I can make them out just for my own sake, I NEED these glasses. Besides the cost though, I am kind of excited to get new glasses. Not only for the fact that I'll be able to see better but I like wearing glasses. I'm a bit of a geek at heart!
Then I get home & learn how much people very close to me don't even understand what I'm going through. Giving me their advice thinking that the doctors advice is bad, & being on this medication is screwing me up. It's not the medication, it's the condition. If I stopped the medication I'm on I would be so much worse off. I don't have a thyroid anymore. I don't have one that's even partially working to help control my metabolism. If I don't take a medication or supplements to help I have NOTHING controlling my metabolism. Just eating certain foods & exercising is not going to make me better (though I understand it can help). At least I also understand why they wanted to put me on prednisone. My doctor didn't extend the use of it, which he very well could have. Even though I may be confused & frustrated about what the doctors are telling me and what their action plans are for me, from what I am reading and learning, everything they are doing & how they are doing it is the best they can do at this point in time.
Then I went to see my endocrinologist. Some things are better but many things just seem the same. I explain to him all my other symptoms that I've mentioned a million times on here before because nothing seems to be getting better & it's all the same thing day after day after day. Turns out my TSH jumped. When you have hypothyroidism TSH is usually high, hyperthyroidism it's usually low. Going over my labs my TSH when I had Graves' was .002, about a week after the surgery my TSH was considered normal at 2.199 and now it jumped to 7.499. TSH is not the only thing we are looking at with my blood work but being that high it's a major reason why I feel like crap. He explained to me how my pituitary glad is overworking due to the fact I have no thyroid proving that the medication dosage I'm on is not enough. So my levothyroxine was upped from 125 to 150mcg.
When I was at my endocrinologist he had no clue why I was waking up at night sweating like crazy and feeling like crap. Then, like a miracle, Stop the Thyroid Madness posted a link about sleeping disorders when suffering as hypothyroid. I didn't know that being hypothyroid could directly effect estrogen levels causing this! This may not be the answer to why this is happening to me as I will need further testing to determine if that's what it really is, but this information will help me with new question to ask & who to seek help from. I may just get better after time when I find the right thyroid medication dosage, and if not, this information will help me know what I may need to test later to fix, yet another, problem.
Remember how I posted that link in my last post about the petition for endocrinologists to be up to date on the care of thyroid patients? THAT LAST PARAGRAPH IS ANOTHER REASON WHY! It seems so simple that I could have told my endocrinologist, "Hey, I'm waking up at all hours of the night all hot & sweating. (Though I'm freezing cold also. I know this sounds all mixed up so imagine how I'm feeling!) Even when I take a nap in the middle of the day I wake up all sweaty. Sometimes I'm not even taking a naps & I get sweaty & gross." His response shouldn't have been, "Oh, I have no clue why that's happening." It should have been, "Well, being hypothyroid it can also cause havoc on your estrogen levels." Then from there advised if I should have it checked out, or if it should get better once my other hormones level out, or if it doesn't what I should do. Nope, he had no clue. Again, PLEASE, if you have not already, SIGN THE PETITION!
I'm not even going to bring it up to him until I see him next. I AM going to call my OBGYN though & explain everything to them because I am on a birth control that could be contributing to this & see if maybe there's something better. Before I change anything I will request another blood test be done to see if this really is the problem though it completely makes sense that it could be!
Because I'm sick of feeling sick I ask when I should start seeing results. Mind you, they said 6-8 weeks after surgery I could be completely better & here I am almost 7 weeks out and feeling like complete crap. Almost feeling the same as I have been feeling since right after the surgery. Here comes the vague, it could be days and it could be longer, maybe another month. Month after month, they keep adding months to how long it will be before I start feeling better so I'm starting to lose faith as to when this time is going to come. I want one week, just ONE WEEK, where I have no symptoms at all. One week where I'm not uncomfortable in my body. One week where I feel normal again to know that I'm finally on the right path. Right now I can't even get a full day in of feeling normal.
So it has been depressing me.
Last night's bath consisted of:
- Rose bath bomb by tmizerek on eBay
- Daddy-O shampoo by Lush Cosmetics
- Buffy shower scrub by Lush Cosmetics
- Divine Calm body wash by The Body Shop (no longer available)
- Sister's Lavender & Vanilla Bean body butter by Mainely Cole's
With my last order to fragrancenet.com I got a small sample of Rosemary Mint shampoo and conditioner by De~Luxe SaVON. Though I don't see it for sale on their site I did find it on drugstore.com.
They list the product as paraben free, biodegradable, synthetic fragrance free using pure essential oils, it has natural plant based ingredients, 100% pure botanical extracts, and it's cruelty free, not tested on animals!
I was able to use the samples over about a 4 day period. The scent is very strong with both the rosemary and mint so if either of these bother you, as the scent will linger in your hair, the product may not be for you. Having short hair, a little bit went a long way as it lathered nicely. 99% of the time I air dry my hair & these left me with a nice bounce & volume, a good clean feeling, and softness.
I would definitely buy the full sizes for myself & the cheapest I did find them were at drugstore.com. If you are interested in doing a trial of the products before you buy, drugstore.com does sell travel sizes, currently $1.59, of both the shampoo and conditioner.