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Posted 5/30/2008 3:31 PM (GMT 0)
Sigh. I just got back from the doctor. The appt didn't go as well as I'd hoped.

-My doctor did not prescribe folic acid for me even though I'd asked more than once. He doesn't think I need it.
-He told me not to take the Strovite.
-My doctor would not let me take iron. He didn't think my symptoms sounded bad.
-I have to go for a blood test (this part I don't mind, I figured that anyway.) I'm not sure if I'll be able to get to a blood test center for another week for multiple factors (menustral cycle, don't want to lose anymore blood, and no way to get to a facility until June9.)
-He told me to drink more water. I think I'm drinking plenty. It's already difficult for me to consume so much.

So really...I'm in the same boat. I'm going to continue taking the extra 400mcg of folic acid for a total of 800mcg a day for now. I'm also going to try to find another dr I can get a second opinion from.

I'm quite upset. :(
Posted 5/30/2008 3:38 PM (GMT 0)
Your doctor doesn't think blacking out and losing your vision for 10 seconds at a time sounds bad?! Find a new GI ASAP! Sorry you had to deal with that.
Posted 5/30/2008 3:43 PM (GMT 0)
I'm with Sara14--find a new GI! Blacking out and losing your vision should be some red flags. I'm sorry your doctor wasn't any help.
Posted 5/30/2008 4:00 PM (GMT 0)
UGH trust me I know. I'm really angry and upset right now.

Looks like I'm in for a fun weekend of researching doctors! woohoo.
Posted 5/30/2008 4:13 PM (GMT 0)
Kasey, sorry to hear that your appointment didn't go well. I know it is more work, but I would definitely look for a new GI. Sulfasalazine and Folic Acid supplements pretty much go hand in hand as far as I know. He might be ticked off because he missed this and you are bringing it up to him, making him feel incompetent. And if that's the case, he should still do the right thing. Your blacking out is a serious thing. He sounds like a real sh-- head. Didn't you say that your Dad is a Doctor? If so, perhaps he could find a good GI to go to. Doesn't he think the blacking out and losing your vision is a bad thing? In all my years of living with UC, I've had 3 different GI's. And all 3 of them prescribed the Folic Acid right along with the Sulfa. Good Luck, I know it's a pain to look for a new Doc, but we have to advocate for ourselves, and do what we feel is right for US.
Posted 5/30/2008 4:57 PM (GMT 0)
Yeah my dad is an eye doctor. Very far from a GI. So he knows about vitamins and all that, which he sometimes has to prescribe for his patients, but he doesn't know anything about the medicine I'm taking except for what he read online (this same as I did.)

We don't live in the same state. And he doesn't want to diagnose me unless he can check, you know, my vitals or whatever it's called. Anemia can be detected through the eyes often, so I wish I could get to him soon. He's going to write me a prescription for blood work too so he can get the test results though.

I haven't had any blackouts since Sunday or Monday, I can't remember now. I am still having major concentration/focus problems and the dizziness and lightheadedness is not improving either. My head is really cloudy. Work has been really difficult this week.

My aunt goes to a GI in the city at Cedars Sinai I believe? My mom is going to call her to get the info and then hopefully I can get an appt with him. My aunt had her colon removed a few years ago.

I keep second guessing myself, thinking that maybe this all is in my head because I'm hyper aware of the side effects and maybe I'm looking for them? But then I think, no, this is not normal for me.
Posted 6/4/2008 5:35 PM (GMT 0)
KaseyF, How are you doing? Are you feeling better? Did you see your doctor?

Malka
Posted 6/4/2008 7:08 PM (GMT 0)
Hi Malka! Thanks so much for thinking about me!

I wish I had a more upbeat post...

I'm still pretty much the same. My doctor gave me a prescription to get blood work to test my iron levels, but I couldn't go last weekend and now I have my period and don't want to lose anymore blood so I probably can't get blood work until this coming weekend, or maybe not even until Monday depending if I can find a ride to a testing facility.

Today and yesterday have been kind of unbearable. I'm extremely dizzy/lightheaded because of all the extra blood loss that comes with a heavy flow (which is MUCH heavier than normal for me. I don't know if this is cause for concern?) I actually had to tell people at work today about my lightheadedness because I couldn't really concentrate on the tedious task they gave me. They probably won't hire me again (I'm freelance), so that's just lovely. I'm exhausted all the time too. My poor agent is waiting on a revision of my novel, and I just can't find the energy to write after working 8 hours already. I used to be able to do both no problem.

I did make an appt for a new GI, but it's not until July 7th. He's highly recommended though, and that's probably why the long wait. I'm very excited to go to him.

I've been taking 800mcg of Folic Acid a day. I don't really notice a difference, but mentally I feel better about taking extra Folic acid. I can only take it in increments of 400mcg until someone will give me a prescription for a full miligram.

I DEFINITELY notice a difference when I take the multi-v every day. My head becomes much more clear and I'm more awake. It has 18MG of iron, I wonder if that's why.

As for the UC, it's been pretty decent. Rarely any blood. Mostly semi-formed. And I've only been going 2-3 times in the morning. I feel almost normal in that way. I even went to a wedding this weekend and had a few glasses of wine and it didn't affect me at all. The Sulfa pills are getting easier to swallow too, I think I figured out the technique finally.
Posted 6/4/2008 7:42 PM (GMT 0)
If I were you, I'd take one more folic acid which would give you a little more that one milligram. My doctor told me that you can't overdose on folic acid - any excess you would just pee out. Because I take eight azulfidine a day, I take five of the 400 micrograms. (I found that it was cheaper to buy it over the counter than pay the co-pay on prescription folic acid.) You can also try eating red meat or liver which has plenty of iron.

Good luck to you - I hope you feel better soon.

Malka
Posted 6/4/2008 7:53 PM (GMT 0)
Malka, you should ask for pharmacist what the price would be to purchase the prescription folic acid without going through your insurance company. I was paying a $10 co pay for 30 tabs. He told me he could sell me 65 tabs for $10.99 if I didn't go through the insurance. It's worth it if the cost of otc is more money.
Posted 6/4/2008 8:03 PM (GMT 0)
Thanks, Donna. I'll check it out. Right now I have a bottle of 400 tablets of 400 mcg - that's 80 days worth for me. I don't remember what I paid, but I'll check.
Posted 6/4/2008 8:04 PM (GMT 0)

I'm  sorry you're not feeling better, iron-wise. Hmm, if you typically don't get heavier bloodflows, maybe you can mention it to your GI. But your UC sounds like it's doing better!

p.s. That's so cool you're a freelance writer! I love to read and write but it's definitely hard to do when you're lightheaded and dizzy.

Posted 6/4/2008 8:07 PM (GMT 0)
Okay, I'll start taking an extra 400mcg folic acid supplement for a total of 1200mcg per day. Thanks for the advice. It's good to know you can't overdose on it.

Yes, I've been eating a lot of red meat and spinach. I'm not sure if it's helping because I've been feeling pretty much the same every day. But I like the food so it's not a change from my diet.
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