[WWWI2]

#1017809

It takes months to see a new doctor and rarely am I able to find out his/her practice philosophy until I meet with them and often months later.

My first doctor quit his practice because of marriage issues, second one retired so I’m on my third. However I am running into problems with this one. She took me off meds last summer. She said that the add back protocol that my 2nd doctor had me on was antiquated and wrong. She wanted to get a new baseline, so she took me off all thyroid meds.

Since then my TSH has been normal, but it’s been very low normal (.8 to .7 to now .5) and I have been increasingly symptomatic. Enough so that I was put on psych meds. Two months ago she put me on 2.5 mg MMI every other day. It wasn’t enough. She told me not to increase it. I believe she was afraid I’d go hypo. Finally last week I started taking 2.5 mg every day and for the first time in 6-8 months I felt relief. I also am now stopping the psych meds because it is clear the problem is solely my thyroid.

I no longer trust that she knows what she’s doing. She’s also told me that I have a limited time I can stay on MMI. She won’t tell me why the random time limit. She also will not consider Armour or any t3 combo if and when my thryoid is removed or nuked.

I do not know how to fiind a new doctor. The only way to figure out what there philosophy is is to see them and that usually takes months. How do you find a good thyroid doctor who knows how to really treat graves? I’m at my wits end.

WWWI

[Raspberry]

#1061058

Hi again WWWI2! I’ve fought with this issue too and can’t say I beat it but here’s a few ideas. They may let you ask one specific question about how the doctor practices before you make the appointment. Sometimes they will tolerate this and let you talk to the doctor’s nurse. The test question I use is do they prescribe T3 or Armour for patients on replacement. If they refuse to do that they are likely old school. I’ve found asking specific questions on how they prescribe methimazole or how they judge dosing to not be simple enough to get a straight answer. There’s also internet doctor reviews which are better than nothing but can be misleading if the doc is charismatic.

[WWWI2]

#1061059

Hiya Raspberry, again

Thanks for your response. I think that’s a really good idea, that of having one solid question to ask. I think that would get a good response. Sadly I’m just feeling overwhelmed at the process of having to begin again with yet another doctor.

I have had three doctors and each one has had their challenges. I don’t want a perfect doctor (well actually I do) but barring that, I just want one who genuinely will work with me and if they find they disagree with something I’m requesting, at least have a reasonable answer as to why. Why is that so much to ask?

Ironically the doctor I’m seeing now is younger than I am. So it’s very hard to understand why she’s “old school”. But I think she’s simply just not well versed with Graves treatment at all.

Thanks again Rasp Was a great answer!

WWWI

[Kimberly]

#1061060

Hello – Agree with Raspberry’s suggestion of asking a simple question when trying to make an appointment. In terms of narrowing down docs in your geographic area, the “Looking for a Doctor?” thread in the announcements section of the forum has several options.

In the meantime, I would really urge you to go back to your primary care provider to ensure that you have *someone* managing all of your medications. You absolutely deserve to have a doctor that is up to date on the latest research and who is willing to work with you to get your quality of life back — but making adjustments on antithyroid and psych meds without a doctor’s oversight can potentially do more harm than good.

[gatorgirly]

#1061061

Low normal doesn’t equal feeling normal. The same goes for high normal. I feel at my best when my TSH is at the low end of normal (right around 1.0) but my really-old endocrinologist at first tried to keep me more in the middle around 3.0 and I felt awful/hypo.

Why don’t you request an appointment where you sit down and tell her you want to listen to your body in addition to the labs, and that you feel really good on 2.5mg/day? I can tell you right now from working in healthcare that your doctor can discharge you for going against medical advice by changing your dose on your own, so you may be looking for a new endo whether or not you want to, but I’m sure you knew that.

She’s not at all alone in telling you that you can’t stay on the methimazole forever. My dad’s endo tells him the same thing all the time, and we brought it up at a recent Boston support group. The endos and surgeons told us plenty of their colleagues say the same thing – it’s physician preference. Certainly we know people who have stayed on methimazole long term but a lot of physicians aim to get their patients off all medications whenever possible, so they push us toward surgery or RAI. You can refuse of course, but it isn’t her being close-minded or not following the latest research. There simply isn’t enough research on people who remain on ATDs indefinitely.

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