[JoeSunny]

#1059067

I’m a 25 year old guy diagnosed with Graves’ disease back in 2011 and Graves’ Ophthalmopathy. Had RAI treatment in October 2011. Then I relapsed in February 2012, got put on PTU 50mg. Got a call today saying to STOP the PTU as my levels were too high. Originally the Grave’s disease was triggered way back in 2008 by emotional trauma and built to critical in 2011. In Jan-Feb 2012 I experienced more loss and severe emotional trauma, the possible catalyst for the relapse.

There is ZERO communication between my Endocrinologist and myself. I am never told what my levels are, only “too high” or “too low”. I do not even know what the basics about my condition are like what is “normal” for a person, and lifestyle changes to make etc. His method of treatment is “take this for 5 weeks get a blood test and see me”. Now I have actually gained 7 pounds AND am being told my levels are too high so go off the drugs. I am looking for a way to talk to doctors out of town/state and I am having severe difficulty finding information or a way to contact doctors thru my health insurance.
Any input/suggestions would be helpful. Thank you.

[jamcam66]

#1171912

I am so sorry you are experiencing such confusion with your GD. I am too as well & it is confusing! And soooo frustrating. Sometimes you just don’t know what to do & the end up posting on this site. (So glad it’s here)! I just wanted you to know I read your story & I wanted you to know that you’re not alone.

[Kimberly]

#1171913

Hello and welcome – One thought would be to have you doc’s office give you a lab slip for blood work for your *next* appointment at each doctor’s visit. If there is somewhere local that you can have the blood draw done, then this will allow you to spend your doctor’s visit discussing the results and asking questions, rather than getting labs done — and then later trying to interpret dosing instructions left over the phone.

It’s also helpful to ask for a hard copy of your labs when you visit the doctor – this way, you can keep track of where you are compared to your lab’s “normal” range and note your progress over time.

I hope you see some relief soon!

[Bobbi]

#1171914

I can empathize with you JoeSunny. A few months after my RAI treatment, and after being put on replacement hormone, I was gradually weaned from replacement hormone, as I kept going hyper. I began to call my thyroid “T-Rex” or “Arnold” (after the Terminator character that went through the truck fire — translate RAI — and came out skeletal, but still lethal.) I don’t quite know what was going on back then, but after spending a couple of months completely off replacement hormone, I gradually had to start increasing it again. The bottom line is that it is all a process. We DO have to wait a minimum of five or six weeks before having our blood tested again. It is the nature of the beast. Try to stay patient, and positive. Not easy to do, I know.

[JoeSunny]

#1171915

Relieved to see some responses. Got a little of the confusion cleared up with the office. My PTU dose had apparently pushed me far too low. The medication level was high, the thyroid too low.

I wish I could say that I was feeling better. I am in a very “emotionally toxic” environment where I live and leaving is, currently, not a viable option. I do the best I can to “maintain” and I do, though it is not pleasant.

Thank you for your responses.

[Bobbi]

#1171916

Sometimes our doctors put us back on the antithyroid drugs after the RAI in order to keep us from spending any more time hyperthyroid. Sometimes, our doctors have us ride out the hyper period without those drugs. It just depends upon the doctor. But as your thyroid cells die off, you need less of the antithyroid meds obviously. Which apparently is what has happened in your case.

Going five weeks between blood tests is pretty standard. My endo waits typically six weeks to three months. It gives all the various hormones time to “settle in.” It isn’t easy to wait, but waiting does, ironically, help shorten the process of finding the precise level of replacement hormone that we need. It takes time for certain of the blood tests to accurately show the reality of our current levels. TSH is, for example, a bit of an average over time, so it most definitely lags a bit behind the actual thyroid hormones themselves. It is, however, a much more accurate test. So our doctors do like to rely on it.

Try to keep in mind that when our thyroid levels are wonky, our emotional responses to the world around us are also off-kilter, abnormal. We feel things more intensely, and have wider emotional swings than we normally would experience.

[naumanb]

#1171917

I know that at my doctor’s office there is a way to access my lab records and all my medical information online, where I can look at my levels myself. I do not know if this is an option for you but see if it is possible.

Also, if you feel your doctor is not giving you the right input that they should be then you should definitely look around and see if you can find another! I know it is not as easy as it sounds! My clinic that I go to has one endo and I lucked out so far and he seems to be pretty great at explaining everything I need. Everyone deserves to feel like they get the right amount of attention from their endo! I wish you the best of luck with everything and hope all goes well for you!

[kms1246]

#1171918

When my son was diagnosed we had an endo that we hardly seen. I was not happy with the APRN she could not answer most of my questions and dismissed my sons symptoms. We stayed with that office for a year. At the time he seemed to be heading toward remission. Unfortunately that was not the case. We had to find another doctor. Now that we switched he is more comfortable and so am I. I can e-mail her whenever and she responds right away. When his thyroid inlarged and we were anxiously awaiting his blood work she actually left a message giving me her cell phone number. I hope you find someone who can make you feel more comfortable. It is so important, you deserve that. Good luck!

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