[StacyA]

in reply to: Against medical advice?? ugh! #1176194

I realize that, of course!

[StacyA]

in reply to: Against medical advice?? ugh! #1176192

At the risk of jinxing it..it seems better or at least not worse. No hives just had some itching in.several spots and on my thighs there was a weird dry spot that was red and itchy/uncomfortable that was under two inches long and cleared right up with hydrocortisone ointment. That is it so far. Some days are itchier than others. None of it so far has kept me up at night, thank goodness. The doc wouldn’t say statistically how likely this mild side effect is to be an actual allergy, as opposed to a side effect. I pointed out that the literature that comes with the mmi States rash and itching is the most common side effect but nope..doesn’t seem to matter to any doc I’ve spoken with they just want me off it. Sigh…I told her if it gets.worse of friggin course I’ll get off it immediately but at this point, since its likely id still have the itch on the ptu, I don’t want to switch. If the itch is either from a rapid hormone drop or some thing unrelated to the mmi then switching will prove nothing anyway. and then if I still itch on the ptu they’ll just blame the ptu and insist I have rai or surgery. Yeah… great. So tomorrow I’m calling to try to get a second opinion from another practice entirely but I’m pretty sure its gonna wind up they say also to get off the mmi.

so here’s another issue- my last labs two weeks ago had my FT4 at the very low end of normal range and according to what ive read that means its definitely time for a dosage reduction to get you on a maintenance dose. So ive lowered from 10 Mg to 5 thinking it may also help the itching especially since there’s a school of thought that the reason most people start itching after 3 -4 weeks on the methimazole is because that’s when they need a dosage reduction. But this endo says she def wouldn’t have lowered me and she thinks I’m now on too low a dose and should have stayed on the ten. But my numbers were so close to hypo I just don’t understand that. This shakes my confidence in her. Ive been told you ideally want to not be too close to the low end of normal range and since I was it would seem the dosage change was required. The fact that shes convinced I need to stay on 10 Mg when most people seem to be on a maintenance dose of 5 or UNDER worries me. ( 6 weeks ago my Ft4 was 2.54, and two weeks ago it was .86, with the normal range( ref. 71-1.85). SEems I am headed for hypo and a reduction was a good idea. no? What do you think, Shirley?

[StacyA]

in reply to: Against medical advice?? ugh! #1176190

, So I spoke to the doc and she said shes afraid the rash could escalate to anaphalaxis, which though rare, could happen if I stay on a med Im allergic to. She acknowledges that it could be a side effect etc or not anything dangerous, but she has to go the safe route. I said I am less worried about anaphalactic shock than liver failure, though of course Im worried about both. So I asked what is the harm in lowering the dose to 5mg, she said shes almost certain the 5mg may not be enough of a maintenance dose and really wants me on the 10 mg daily. She agreed to have me rebloodtested in 3 weeks to see how my levels are. I was on the low end of FT4 at last test, so I think maybe it WAS time for a decrease. But i am not a doctor. The only way to see if I respond okay to the dosage change is to wait and do bloodwork I guess?? I wonder why she thinks 5 mg will be too low. As of two weeks ago my levels for FT4 were very low, so I wonder if maybe I SHOULD be decreased, rash aside? Ft4 is now. 86 ( ref. 71-1.85). 4 weeks ago it was 2.54. Tsh still suppressed but no longer completely undetected, now .016 (ref. .49-4.70). . What do you think? Should I have been decreased anyway based on these labs or am I headed for a relapse on the 5mg, and therefore headed to PTU?

[StacyA]

in reply to: is 2.5 weeks too early to say ptu isnt working. #1176200

Ive read PTU takes a minimum of 4 -6 weeks for most people to respond, I would definitely not panic at two weeks that it isnt working.

[StacyA]

in reply to: Going to get RAI in a few minutes #1175987

How are you feeling? Thanks for this dialog.. I never knew or imagined any of this.. just thought you took a pill and hid for a while. Never knew you felt sick this way. Wow. Stay strong. And best of luck for a new healthy year.

[StacyA]

in reply to: Allergic reaction to Methimazole #1061550

Bumping this up for myself. Wonder how she made out.

[StacyA]

in reply to: Against medical advice?? ugh! #1176189

I live in a small area, theres limited endos here, and no, my regular doc wont treat Graves, I asked. Ugh. I am going to search around, yes. But I talked with the nurse again and she basically said shed be shocked if the endo comes back from maternity leave and discharges me, she said they have other patients who arent comfortable with certain treatment options and she’s never seen this doctor kick someone out of her care for that issue. But till I talk to her I will worry about it. Thats how I am. I am hoping she will call me wednesday. Since tomorrow is a holiday and shes not even obligated to take calls, I would be pleasently shocked if I heard from her before then. And even Wed is no guarantee, as she may not want to make calls from home with a 2 week old baby and a c section recovery on her plate.

bad timing, all of it. If I had gotten to her first, there is no saying she wouldnt be telling me just to stay on the MMI. Now she may be reluctant to go against the other more senior doctor publically. So I may never find out what her real opinion is now. But if I can talk with her at least I can give her mine and see what her reasoning is. I wnt to ask her lots of things. If she does not call, my next step I guess is to figure out who else is on call THIS weeek and run the entire story by another endo altogether, to at least get another opinion in her absence, and to keep looking for a new practice in the meantime if I cant get support here.

[StacyA]

in reply to: breastfeeding moms, can you continue after surgery? #1176159

What’s the exact.chemical you take the week prior? Thanks!

[StacyA]

in reply to: Against medical advice?? ugh! #1176185

I’m afraid they’re going to discharge me as a patient. But I am standing firm.

[StacyA]

in reply to: PTU vs MMI & pregnancy vs. the vast & terrifying world of the internet #1176175

Just lending support as I am breastfeeding and also paranoid about the liver effects of PTU and currently fighting with my endo over it, too… I have read ptu is highly recommended for the first trimester, at which point you can usually safely switch to methimazole.

[StacyA]

in reply to: breastfeeding moms, can you continue after surgery? #1176157

I’m praying like a mad woman I can keep taking the MMI and it works, because I don’t really think I can wean for a week…. not yet… ugh… I thought surgery was going to prevent having to wean, even temporarily …. this isn’t the best news..very depressing. Thanks for the info. I wonder if I have to wean for that week…. going to need to research.

[StacyA]

in reply to: breastfeeding moms, can you continue after surgery? #1176152

Yep you’re right, I didn’t know that! Can you nurse after you drink that?

[StacyA]

in reply to: breastfeeding moms, can you continue after surgery? #1176150

Thanks again!! When was your surgery? I’m confused, it sounded like you were also talking about radiation?.

[StacyA]

in reply to: on methimazole.a.month..too.soon.to.lower? #1176126

gatorgirly wrote:

I was on P TU for a year with no side effects and no liver problems.

I know..thanks.. I’m very medication paranoid… and I know the mmi is working so id really ideally like to stay on it..just in case I could be one of the few to have a liver prob with ptu…. ..Its hard …..

[StacyA]

in reply to: on methimazole.a.month..too.soon.to.lower? #1176125

Well said, thanks Shirley. I won’t be able to reach my endo till next week at the earliest. I myself suggested the dose decrease to the endo on call when he wanted to take me off it altogether. He agreed but wrote in his notes it was AMA. he wants me off it. I don’t understand how he seems to know its an allergy as opposed to a common reaction. How could he assume that so early and without seeing me? Its possible my endo would say the same but based on her dislike of ptu I think its not as likely. I do have some localized itching and a small rash but hydrocortisone cream really helps. I have Zyrtec on hand and I actually haven’t taken it yet, was using the topical hydrocortisone as I lowered the mmi dose and didn’t want to mask symptoms… tho maybe I should take the Zyrtec? The rash is improved with the cream for now. Thoughts? Xoxo

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