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Hi Everyone,
Well, I’ve had another fun Graves’ related setback. I’ve developed mouth ulcers after a week on 50mgs/day of PTU. I know this is a potential sign of the dreaded white blood cell drop, so I called my endo to see what he thinks I should do.
Well, the good news is that my labs are back and the MMI/PTU worked, even if I reacted to it – my numbers are in the normal zone starting to dip into the hypo zone.
The bad news is that the doctor wants me to stop taking the PTU. He thinks for now I should stay off the drugs and see if I’m in remission. When I started the drugs my TSH was low, but my T3 and T4 numbers were in the normal range, so I was technically subclinical hyperthyroid – so my Graves’ was pretty mild. He thinks it’s worth waiting and seeing if my numbers stay normal or if the Graves’ continues to affect me.
The really bad news is that he thinks RAI would be the next option if the Graves’ comes back. I’m not ready to do RAI. What I would like to try if I’m not in remission is a really low dose of MMI paired with an antihistamine every day – I felt great while I was on MMI. I have a follow-up appointment with my endo on Tuesday, and I plan on bringing this up then. I also want to ask him what he would have had me do were I NOT having reactions to the drugs.
I guess I am wondering what other questions I should be asking. If he continues to push the RAI I think I will try and get a second opinion. Seeing how my tests are showing me in the normal range, it’s possible that my reaction to the MMI was a sign that I was on too high of a dose, correct? What should I be asking? What’s the best way to advocate for myself? I’m so new at this. Thanks for any suggestions/input you may have!
Hello – I would suggest reviewing the latest medical guidance from the American Thyroid Association and American Association of Clinical Endocrinologists and printing the relevant pages out for your doctor. This is the guidance that states that for “minor” skin irritation with methimazole, you can keep taking the drug in conjunction with antihistamines. You can find the document in the second link in the “Treatment Options” thread in the announcements section of the forum. The section on skin reactions is on page 604 of the original journal article, or page 12 if you download as a PDF. As to whether your reaction was “minor” enough to warrant giving Methimazole another try, that’s a judgment call that a doctor will need to make.
Itching/hives can be a reaction to the meds, or it can also occur with hyperthyroidism itself – it’s hard to say after the fact which issue you were dealing with.
If you do decide to seek a second opinion, the “Looking for a Doctor?” thread in the announcements section of the forum has some nice search engines by city/state/zip.
As for dropping the meds entirely, antibody testing would normally be recommended before doing this in order to gauge the risk of recurrence. But the fact that you were subclinical to start with could possibly give you a better chance, as many cases of subclinical hyperthyroidism are monitored without any treatment at all.
Take care!
Kimberly wrote:Hello – I would suggest reviewing the latest medical guidance from the American Thyroid Association and American Association of Clinical Endocrinologists and printing the relevant pages out for your doctor. This is the guidance that states that for “minor” skin irritation with methimazole, you can keep taking the drug in conjunction with antihistamines. You can find the document in the second link in the “Treatment Options” thread in the announcements section of the forum. The section on skin reactions is on page 604 of the original journal article, or page 12 if you download as a PDF. As to whether your reaction was “minor” enough to warrant giving Methimazole another try, that’s a judgment call that a doctor will need to make.Itching/hives can be a reaction to the meds, or it can also occur with hyperthyroidism itself – it’s hard to say after the fact which issue you were dealing with.
If you do decide to seek a second opinion, the “Looking for a Doctor?” thread in the announcements section of the forum has some nice search engines by city/state/zip.
As for dropping the meds entirely, antibody testing would normally be recommended before doing this in order to gauge the risk of recurrence. But the fact that you were subclinical to start with could possibly give you a better chance, as many cases of subclinical hyperthyroidism are monitored without any treatment at all.
Take care!
As always, thank you for the informed and informational response, Kimberly. Much appreciated!
Hi, Misslex–
I’m sorry you’re having these reactions to the ATD’s. It’s smart that you’re looking into all options before switching to another type of treatment. Hope you are able to stay on MMI with Benadryl. Sounds like that was working well for you (aside from the reaction!) Keep us posted on what’s happening with you, and hang in there!
Amy
Misslex, sorry to hear you’re having a rough time getting regulated. Kimberly always has good recommendations. Maybe a different combination or a different dosage would help. Sounds like you are already onto that and are advocating well for yourself. Don’t let one doctor talk you into a treatment method as permanent as RAI or TT unless you are comfortable, which could mean getting second opinions.
Wishing you the best,
Karen
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