# Now what do I do?? :(



## StacyAr (Nov 10, 2012)

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?


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## StacyAr (Nov 10, 2012)

Someone? Please? I need your advice.


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## lainey (Aug 26, 2010)

When I read your posts, I am trying to figure out exactly what you are angling for.

First, your numbers have come into line and your dose has been reduced. By reporting the rash to the doctor, did you figure they would ignore it? Allergic reactions can be life threatening too, so of course the first thing the doctor is going to suggest is switching medications.

Why are you so convinced you are going to have the very rare liver side effect from the PTU? Of course you have then at least a 50% chance of tolerating it as well, and this won't take any more blood testing than your currently need to determine if there is a problem.

At this point, you should be doing what you need to do to get healthy, without so many codicils and quid pro quo's. The undercurrent that I get from your posts is that you are still fighting treating this, when you need to give it time and let the medicine work.

As for "all that is left", surely you have figured out by now that oral medications are not considered the permanent solution to this problem. With thyroid disease there are no quick and easy answers, nor results. You did post a thread about "thinking ahead"--start talking to your doctor about it, especially if you are not done building your family, because the route you choose factors into that.


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## HotGrandma (Sep 21, 2012)

Stacy:

If I were you I would stay on the lowered dose of MMI and adjust only after labs warrant so. In addition you are breastfeeding (am I correct) that constitutes hormonal changes with the same symptoms as thyroid. Just like me go slow and it takes time. I've been dealing with this since April 2011 and am still not in normal range. Your other thread was asking about TT that's not an overnight cure either. Lots of labs and adjusting meds. It is winter and to address some other posts about dry skin, itching and zits. Maybe try some essential fatty acids like evening primrose oil or Omega 3 6 9 and rinse your skin with "BRAGGS Raw unfiltered Apple cidar Vinegar". Zaps those zits and clears lots of skin irritations like a miracle.

Happy New Year. Just be patient.


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## StormFinch (Nov 16, 2012)

Truly Stacey, just the worry you're putting yourself through combined with the thyroid and breastfeeding hormones could be the reason behind both the hives as well as the acne you mentioned somewhere else.

How are the hives doing on antihistamines? If it's clearing up, tell the nurse that and ask that you be left on the MMI unless it comes back. If they want you to go ahead with the PTU, realize that there have been 47 TOTAL cases of liver damage since 1947, and a third of those were in children. It's not quite the monster it's made out to be, it's just not as safe as MMI... possibly because MMI is 10x as potent in the blood stream so lower doses can be given.

Sit back, take a breath and relax. Enjoy your little one's firsts. They fly by so very fast and believe me, some day you'll miss them.


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## StacyAr (Nov 10, 2012)

Thanks, I know I worry obsessively.

This is what Elaine Moore said when I emailed her:

Hi,

You're right. Itching is a common side effect and so is rash, and it's very common when the dose is too high. You want to be on the lowest dose needed to bring your FT4 near the high, not low, end of the range. There's no good reason to switch you to PTU. It sounds as though you have mild Graves' disease that's likely been over-treated. I'd probably find a different doctor and it doesn't have to be an endo. 
Best, Elaine

Lainey, obviously I wanted the endo to react. But not overreact or do what's easiest for THEM. A patients feelings, especially if valid, have to be part of the equation.


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## lainey (Aug 26, 2010)

> Lainey, obviously I wanted the endo to react. But not overreact or do what's easiest for THEM. A patients feelings, especially if valid, have to be part of the equation.


Here's the thing--if you have called to report a reaction, and they have not seen it to judge that it is minor, nor if you have reported that you managed it with antihistamines, the doctor is then making a clinical decision based on the facts as you reported, and what should be done to prevent further reaction. Lowering the dose/changing the medication are both reasonable options, not an overreaction, and both were suggested.

How is it that your feelings about your type of treatment are supposed to factor into this--if a change may need to be made in their opinion? Your treatment choices are limited to what's available, and how you feel about the treatment doesn't change the fact that you need to do it, one way or the other.

Thyroid patients get wrapped up in the idea that doctors are supposed to treat their emotions--endocrine doctors treat endocrine disease--psychiatrists treat emotions.

So, did the lowered dose reduce the rash? Are you taking an antihistamine and has it has an impact?


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## StacyAr (Nov 10, 2012)

They did not want to lower the dose. Both were not suggested. The only option they offered was to get right off the mmi. I just find that odd since many docs would offer to lower the mmi and use antihistimines as needed. I don't want them to treat my emotions but they as docs need to listen to the patients wishes and not make them feel unheard. My wish to stay on the mmi and lower is not unreasonable. I insisted upon it. They did not offer that option and instead wrote in the chart it was AMA. I suspect if it were your doctor unilaterally telling you what to do and not hearing any other possible paths you would not take it as well.


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