[StacyA]

#1059607

Sorry for.typos..hard to type on mobile Device.

I am sorry also for obsessing but till my endo gets back from maternity leave (I’m working on getting her nurse to email her in the meantime) I feel like I’m winging it… I don’t mean to be a pain..

So my ft4 was 2.54 and it is now .86.. ref .71-1.85. Big improvement in just four weeks. Tsh was undetected, now its still low .016 (ref. .49-4.70). That’s all he tested for aside from liver and wbc. Anyhoooo, am I making a mistake by lowering it from 10mg to 5mg daily after just a month on it? Am I asking for trouble? I’m terrified the symptoms are going to return because I wasn’t on it at the original dose long enough to get stabilized. The endo on call agreed to it to see if I could stave off the rash from.the mmi, but what hes really wants is to take me off it altogether and put me on ptu, which I think is jumping the gun for what SO FAR is a smallish rash.

[vanillasky]

#1176119

My doctor told me PTU has worse side effects! I’d check that out first!

[snelsen]

#1176120

I took PTU with absolutely no trouble, and no side effects.
Shirley

[Bobbi]

#1176121

It can be very difficult to determine causation (of the rash) without eliminating possible sources. And, the problem with allergic reactions is that they tend to grow, not stabilize, over time. Also, there might be other allergic things going on inside the body, side-effect-wise, that you cannot see, that could be more serious.

Have you actually seen the endo on call? Or has it all been handled via phone calls? It might help to actually be seen by a doctor. This time of year, that can be extremely difficult. If you haven’t been seen and cannot be seen in a timely fashion, can you take a decent photo of the rash problem and get it to your endo’s nurse, so that he/she can convey it to either the endo on call, or your endo.

As for cutting the dose, temporarily, I think you need to follow the doctor’s instructions, barring other possible approaches (like the ones mentioned above). As for the PTU, many people over the years have taken it and had their symptoms controlled. Side effect issues are similar, but the drug is a different chemical from methimazole so sometimes people tolerate it who cannot tolerate methimazole. The problem with PTU, however, is that significant liver damage issues have shown up in “some” patients, (I don’t ‘know what percentage) and as a result endos are relying on it less than they used to. My own endo will no longer prescribe it, she tells me, unless it is for a pregnant woman in the first trimester of the pregnancy. (Methimazole…during that specific period…can cause scalp issues in the baby, apparently — i.e. birth defects…who knew?)

I know this type of situation is tremendously upsetting, StacyA. I’m sorry the treatment didn’t go more smoothly for you.

[StacyA]

#1176122

That’s why I don’t want to switch to the ptu. The liver possibilities scare me. Also there’s a fifty percent chance.if you react to one with a rash you’ll also react to the other. And I don’t want to use the ptu so early in the game as there are only two drugs anyway and once you’ve reacted to both there’s no meds left to try and I’m not able to do rai while nursing obviously and not ready to stop nursing if at all possible to continue.

Haven’t seen the endo this week, no. The rash is not very pronounced so don’t think a pic would work but will try.
When you say the allergy could be worse inside the body, how would I know? Isn’t it possible this is just one of the side effects they list with the drug as opposed to an allergy? My endo on leave doesnt.really.prescribe ptu anymore. Im not comfortable with her.coming back from leave and finding.me on it. .. unless i truly am allergic i dont want to stop the mmi. But my question is, if i lower after only being on it a month am i asking for return of hyperactivity? This is so hard…. thanks all.

[gatorgirly]

#1176123

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

[snelsen]

#1176124

I think there is value in most of the comments stated in this thread. At this time, it really matters that Stacy does not want to take PTU. It makes sense to feel that way, for now, MMI is the preferred first line ATD. Stacy, does benedryl help your rash symptoms of itching? Or do you have itching. I may have missed something along the way that you said, but I am unsure if a doc told you to decrease MMI, or if you are thinking about doing it on your own? Sorry that I missed this.
I sure hope your endo on maty leave gets the results from the nurse. I don’t blame you a bit for wanting the continuity.

As an RN who has worked for many years, I can tell everyone that there is much confusion about the words “allergy,” “side effect,” and reaction. Examples abound. People misunderstand, and when they say they have an allergy to a drug, they frequently think that constipation, or a transient rash.
Some of these symptoms are “localized” and not “systemic.” This is simply a comment, not specifically related to ATD’s.

I sure am sorry, Stacy, and I hope by now you have some guidance from your doc who knows you. I think your thought that you have been on an ATD for only a month, is relevant, too. Completely understand you don’t want to return to hyper.
Shirley

[StacyA]

#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

[StacyA]

#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 …..

[Kimberly]

#1176127

A quick note on PTU: the latest medical guidance (which you can find in the “Treatment Options” thread in the announcements section of this forum) notes that: “32 (22 adult and 10 pediatric) cases of serious liver injury have been associated with PTU use“.

The FDA has been tracking these “adverse events” since the 1960s, so obviously this is a *very* small percentage of all patients who have taken PTU for the last 50+ years. However, the stats with methimazole are much lower, so that drug is generally preferred, except in specific cases. (1st trimester of pregnancy, thyroid storm, patients with minor reactions to methimazole who are not candidates for RAI/surgery).

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