[StacyA]

#1059615

So the nurse called the endo and told her (shes on maternity leave) what the endo on call said about switching me to PTU against my wishes. She said she concurred with his advice.

I pointed out the following:
1. there is a difference btwn an allergy and a side effect. People deal with side effects of meds all the time without switching off the meds, if the side effects are mild or managable with other meds (ie: antihistimes, tylenol, etc)

2. I have a 50% chance of having the same reaction to the PTU, and thats all thats left

3. We dont know if this is actually from the MMI and not just a small rash from something else

4. the side effect is currently mild and if it is not increasing it does not seem to be unmanagable

5. Im scared of PTU, as an itch is certainly better than a severe liver side effect. Yes, I am aware many people take PTU with no issues, but I am very medication paranoid.

6. I have already lowered the dose of MMI, why cant we wait and watch? It would seem most people with a severe reaction have it more rapidly, or at least have a spread of symptoms. The two people I know who had a reaction had terrible welts and blisters, not a small rash.

so I asked the nurse these questions, and they wont let me email the doc or email the nurse for her to forward it to the doc, the nurse said shell ask her to call me but cant guarantee it.

I dont feel the doc is likely to go on record as saying she disagrees with the doc on call, so somehow this isnt too surprising. However, the doc did say she doesnt even prescribe PTU anymore and it has fallen out of favor, so why would she be so quick to agree with the doc on call for something so currently minor?

Do I now go against medical advice and hope she doesnt “fire me” as a patient?

[Kimberly]

#1176183

StacyA – Honestly, it would be irresponsible for anyone here to tell you to go against medical advice, and it could also get the Graves’ Disease & Thyroid Foundation in a lot of trouble.

You certainly have valid questions, an dif you don’t feel you are getting an appropriate response from your current doctor, I would suggest a second opinion — even from a GP, if you are unable to get in to see another endo quickly.

[snelsen]

#1176184

Stacy, I like your questions, think they make sense. Think following Kimberly’s thoughts are the way to go. Also, I am wondering if there is such a thing as a telephone consult option from Univ. of Michigan, Mayo Clinic, Cleveland Clinic, University of Iowa.
The other option, which I have done myself, (I am speaking ONLY for myself) is to continue to stay on the MMI for all the good reasons you have stated.
I feel, as you probably feel, that your own doc who is on leave, took the path of least resistance, and simply agreed with the other doc. To say anything else would engage her in further discussion, which she probably does not want, since she is formally on leave right now. Everything is kind of working against you, really. THe nurse was probably afraid to call the endo to begin with, cause I am sure she is supposed to leave her alone when she is on her leave. None of your concerns or questions were probably transmitted, you can almost be sure of that.
It’s true that PTU is the only other option. It seems that your rash is quite manageable. YOu don’t WANT to go to PTU cause you feel there is not enough reason to do that. Continue to get your liver labs drawn, and wait for time to pass.

I know it is much better to have a consensus, but I wonder, as you do, if there has been much thought to switching you to PTU. Maybe there is misunderstanding about the degree of rash/itching you have. Or maybe the on call doc covering her practice, suggested the easiest thing, “try the other one” It really does not seem like you are being HEARD.

Another reminder that I’m just another poster on the board, and not suggesting much of anything, cause I can’t, and am not qualified to do so, but I sure do “hear” you and your thinking is logical not whacky.

Any way you can present your very good questions to the endo covering for her, and see if there is some agreement to have you continue with MMI because you want to do that, and feel very strongly about not moving to PTU at this time?
Shirley

[StacyA]

#1176185

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

[catstuart7]

#1176186

To get a truly different second opinion you have to go to an entirely separate group of endos. And it could be really worth it to you to check out someone else anyway just to see if you’d be happier with a different doc and practice.

[snelsen]

#1176187

I agree with catstuart. Good point.
Shirley

[Kimberly]

#1176188

@StacyA – One thing to consider if you really believe that you will be discharged is to start making arrangements to connect with another endo as soon as possible…or at least confirm whether your general practitioner would comfortable giving you dosing guidance in the interim.

In many parts of the country, waits for 2+ months are common for a new patient appointment.

This forum is a great source for patients to share information and experiences, but it can NOT substitute for appropriate medical guidance from someone who has been properly trained *and* knows your personal medical history.

This is going to be a long-term relationship (I’m going on 5+ years with my own endo’s office), so you definitely want to settle in to a practice that you are comfortable with!

[StacyA]

#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]

#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?

[snelsen]

#1176191

Rash is somewhat common Do you still have yours? Better? Worse? Same?Did you report this to her? I know it is hard for you to get to talk to her, but I guess I’d say (hindsight cause of what she said….) so, if I have a rash on PTU, then what?
I hate to have you spend money and time on another doc, but I feel a little reservation about what she said, that it can turn into anaphalaxis. Perhaps an allergist can give you a more informed answer on this one. Or even a valid, evidenced based article. To me, it sounds like she is sticking to what she said, cause she said it!

So, how much is this rash affecting you? All over your body? Not much?
Are there hives? (which are raised red larger bumps…) blah blah and on and on.

What have you decided to do?
Shirley

[StacyA]

#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?

[Bobbi]

#1176193

A reminder, STacy, that the folks on this forum are NOT doctors. Your options about treatment for your Graves should ONLY come from your doctors. And if you do not agree with your own doctors, please find another doctor and get a second opinion.

[StacyA]

#1176194

I realize that, of course!

[snelsen]

#1176195

Stacy, I realize you were thinking through your whole deal in your last post. Free flow of thought written down is a great way to try to synthesize where you are. I do the same thing, it is helpful. It is really a good one, does a great job describing your thought and how you are doing, and how treating this Graves’ thing we all have is frustrating.

Of course, Bobbi is right on in her comment, and I am sure you realize this.

I went through four endocrinologists before I found the right one for me. It is a lifetime relationship, that is for sure. Another thing to consider, is there are no definitive “givens” AT ALL in doses, amount of ATD’s, etc. Same with RAI and same with prescribing thyroid hormone. The docs begin someplace, use as much information as they can, and you and the doc try to make some sense of your symptoms and your labs (this applies to all of us.)

The days are passing fast, so I’d spend them compiling some bullet points for your next appointment, so you can really get optimal use of your time with your doc. Definitely, if your rash gets worse, or you develop more hypo or hyper symptoms, call and report them, being sure it is written in your chart, and asking for a call back if you are really scared or concerned.

I understand your frustration, do share it with your doc, give the relationship another try, and/or consider trying another endo.
Believe me, I have not had a smooth ride with either Graves’ or TED, with the disease processes or with some docs.
Shirley

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