[beach45]

#1058956

I have had full blown Graves for about 2 years now; on Methimazole (MMI) for 20 months and it’s been a very up and down rollercoaster ride for me. Prior to this for years I was considered “slightly hyperthyroid” with a heart rate typically close to 100 a lot (which I thought was normal) and also with mitral valve prolapse (MVP). Once Graves kicked in full swing, my resting pulse was about 120 to 130 bpm and once diagnosed I was told not to exercise. I was also on edge, shaking like I was withdrawing from alcohol all the time, legs giving out, heart racing, losing weight and extremely on edge.

I have gone to 3 endocrinologists thus far and they all test differently and use different lab values. One was closer to using the AACE (American Association of Clinical Endocrinologists) TSH lab value recommendation (0.3-3.0) yet a couple are not. Then one tests Free T3 and another says that is a useless test and another says that antibody testing is not necessary (as one of the facilitators also explained why it is not used much in another post of mine). Yet then how do I know when my antibodies are lower and I’m not wasting my time trying to go into remission with MMI and that my TED (thyroid eye disease) is possibly being controlled?

Or one may dose by 2.5 mg increases or decreases of MMI and the other, which I have right now, will only go by 5 mg increases or decreases of MMI, does not listen as when I say I’m very sensitive to medications and low and behold I go hypo or hyper very quickly going either way on just a slight adjustment and 5mg either way is just too much!

Why is it one size fits all? I understand fully the concept of going by “Lab values” yet to some small degree symptoms do count. Why is it that there is not a standard of care across the board or is it that I’ve heard from another person’s endocrinologist who specializes in Graves saying that there are endocrinologists who do not know how to treat Graves disease that well?

I had a doctor who listened and even willing to try natural thyroid hormone (for instance like Armour) if I decided to take RAI. Not that Synthetics do not work like Synthroid as I know some people on it who are doing great post RAI. And I’ve heard pros and cons on both Synthetics and Natural hormone. This doctor unfortunately left my area back Spring 2011.

Is it that this disease is so difficult to treat? Or sometimes you hear the worse stories on forums about doctors not working with people? Is it right that patients should be suffering so much whether on ATDs or post RAI or TT as it can affect quality of life only because the endocrinologist says do it this way and that is it?

I realize at times this can be a difficult disease to treat and some people do very well with a certain treatment option and others have a long journey of getting back to somewhat normalcy.

I just do not know why so much fluctuation between doctors with how they treat and test for Graves and maybe it is only my experience in my area?

Also do people work with internists or other doctors with this condition as I was advised with Graves to work only with an endocrinologist and if I had the RAI I could eventually just be monitored by my internist.

I am just curious as I’m finding that people who have doctors who work with them on this disease seem to sometimes fare better than those who work with doctors who tend to dictate to the patient more.

Thank you for any input in advance.

[Kimberly]

#1171182

Hello – I don’t have a great answer for you, but doctors develop their own preferences and biases based on their personal experience with patients and/or the training that they received in medical school.

The guidance on treatment of hyperthyroidism that was published last year by the American Thyroid Association and American Association of Clinical Endocrinologists will *hopefully* over time start to provide more consistency in how Graves’ patients are treated.

Bottom line, though, is that YOU are the customer, and if you don’t believe your current doc is the best fit for you, look for another one. As you already know, with Graves’, our relationships with our doctors tend to be long-term!

I’ve heard of a handful of General Practitioners who are comfortable managing patients on ATDs, but most will refer to an endocrinologist. Post RAI or surgery — and once the patient has dialed in to the “sweet spot” of replacement hormone, GP’s are generally willing to take over the monitoring process.

[beach45]

#1171183

Kimberly,
Thank you for the response.

I see from what you say that doctors do have a certain comfort zone with how they go about treating a disease based on training and experience and do not want to vary much from that or go outside the box. Well especially if their treatment method in general works for the majority.

Yes I do hope that the guidelines will catch on. In fact my ob/gyn who does not treat Graves yet hypothyroid conditions, is starting to use the new lab values and also my internist who is more willing to work with me yet I’m told work with only an endo at least in this phase of my disease!

I agree, I am the customer and I happen to have a newer endo who doesn’t listen and dictates and the one I loved left my area. I do not have the luxury of moving around from endo to endo where I live due to availability; and also at least good endos who work with the patient as I keep up with these doctors on vitals.com or ratemd.com although some of the comments are subjective yet the ones I read on my current endo I’m experiencing similar. I drive 1-1/2 hours to see my current endo and I’m looking into another highly recommended one who is 1-1/2 hours the other way.

You are so right about that our relationship with our endos tends to be long-term! To me feeling comfortable is important. It sounds like your endo works with you and I hear of other patients who endos work with them and that is wonderful and I hope that I get to that point again someday like with the one I had last year who left!

That is the key; finding that sweet spot as you say whether on ATDs or post RAI or TT.

Love your response! Thank you again!

[catstuart7]

#1171184

Hi Beach, I am new and appreciate your post. I am new to the Graves world also, still waiting for my first appointment with my endocrinologist. As I’ve been reading this board and others, nothing has created more anxiety in me than reading over and over horror stories about about people who have had to go through multiple doctors trying to get effective management of their condition. Doctors who don’t even agree across the board about how to even evaluate needed medicine based on TSH or T3/T4 or which tests are standard. People whose doctors not only didn’t help them but made them sicker with the wrong dosage changes.

Yet Graves is the big leagues. This isn’t something we can just go to the supplement store and try to treat ourselves. For this illness we actually need our doctors and their medicine and to walk from it could literally mean death! For me this sudden absolute need for doctors to know what they are doing is scarier than tachycardia. My whole life I’ve had problems with allergic reactions, side effects, and ineffective medications for whatever problem I might have. Doctors have not found me the easiest patient. My best success always came from natural methods, herbs, diet changes and the like. All the sudden Graves comes along and now I have no choice but to depend on the modern medical establishment. All I can do is hope and pray that the endocrinologist I’ve been referred to is a good one, but if they are not? Will I have the presence and clarity of mind to stand up for myself and go forth and seek another one while feeling as bad as I do right now?

Please forgive the ranting…I’m not in a very good place right now.

[adenure]

#1171185

Hi catstuart,

Yes, do stand up for yourself and find a doctor who will listen to you and treat you. It took 4 doctor visits before I actually had someone figure out that my thyroid was the reason for all the hyper symptoms. The first doctor told me he “didn’t have a crystal ball” but he told me that I had anxiety problems, gave me a paper bag to take home with me to breathe into and that was it:/ (and a suggestion to take xanax). He didn’t order any blood tests or even mention my thyroid. If I had accepted his answer, I wouldn’t have finally had blood tests, found the TSH to be off, further testing, finally seeing an endo. and being prescribed methimazole! Knowing what the problem is is such a relief. Starting my treatment (although nerve wracking for fear of side effects, it not working etc…) was a great relief to take a step in the right direction. So, yes, DO find the right doctor! You deserve it!

Alexis

[catstuart7]

#1171186

Thanks Alexis, I will try to keep the faith. As of right now I don’t know whether my new doctor will be good or not. I guess just reading over and over horror stories on the net has not put me in a good frame of mind. I am feeling a little better about it all though today. Oh and I can’t believe that doc sent you home with a paper bag! Good for you for persisting. I suspect I’ve had this trouble for many years at a subclinical level. Looking back there were a few times that it flared when it might have been caught, but it was put down to heart problems and anxiety instead.

[beach45]

#1171187

Hi Catstuart7,
Glad you liked it! I hope it goes well for you with yur endocrinologist. I had a great one who left my area after 6 months. I have learned to work with the one I have currently yet it’s not easy. I read horror stories too and I get depressed. I want to be positive because this is a journey we go on and I believe positive thoughts will bring positive outcomes. My doctor can guide me and yet a lot is up to me too. I find with this disease too my mind is a powerful tool. Graves for me has not been easy to deal with yet I believe I will get there.

That is true some doctors just really don’t help much. That is the time to move on if we can.

Yes Graves is big leagues. A friend keeps saying why can’t I treat this naturally. I already went that route consulting with different medical profesisonals and I find this disease needs to be treated with ATDs, RAI or TT. I never wanted to go on MMI and it’s messed my body up very much and yet now that it is not working I have to have RAI as I just do not want TT. I would love to have found some natural means yet it is just not that way. I’m with you on that I’m ultra sensitive to medications, had allergic reactions and side effects and the doctors for me don’t listen. I am just going now with my endocrinologist as I’m so very tired, frustrated and I wish I had just done the darn RAI back in August 2010 as I was recommended to do back then! Now after being up and down on MMI for 20 months I’m possibly going back to fluctuations before I go on Synthroid or possibly eye problems and putting my body through more turmoil. If I were much younger, maybe I would put up more of a fight; yet at 53, and I’m exhausted with all this and doctors and lab tests, etc. I just hope that this doctor will get me through to where I need to be to maybe get to somewhat normalcy again if there is such a thing! Hang in there though and do the best you can for yourself starting out with this finding the right doctor for you! You will do fine as we all do somehow! Best of luck in your new journey and hope it is smooth for you!…Gloria

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