[sbigler]

#1018484

A bit of background (and my apologies if I ramble ” title=”Very Happy” /> )

I was diagnosed in May 07 with Idiopathic Membranous Nephropathy (kidney failure) and they never figured out the cause. Treatment included Cytoxan (chemo) and a very high dosage of Prednisone (80mg), which then caused secondary adrenal insufficiency. I was referred to an endo to try and fix the adrenal issues once I was weaned off of the steroids.

Last fall I started having high heart rate (which I had before and was told at the time by the endo that it was due to low blood pressure caused by adrenal issues) shakes, choking/gagging, extreme fatigue, watery eyes, etc and so my husband insisted that I go to my family doctor. The doctor immediately guessed that it was thyroid and scheduled all the tests that I am sure everyone on this board has gone through. I was diagnosed with Graves and was referred back to the original endo to be treated via RAI in December.

My issue is this… I still am not feeling well 6 months after RAI (actually I haven’t felt well in three years!!). The endo reduced my Synthroid from .075 to .050 last week because he says that I am still hyper. I am exhausted, allergies are horrible, my hair is thinning, and I have gained 40 lbs. Some of my family are insisting that I try to go to a research hospital like the Mayo Clinic so that I can get a second opinion on all of my ongoing health issues (one said today that she thought I would have already gone that route before I chose a treatment and that I should have been "smarter than that"). Some feel that the endo was negligent for not catching the Graves Disease when I was treated for the adrenal issues (he never tested for thyroid issues). They also feel that a research hospital could help me to find out if I have other autoimmune disorders/issues and could possibly do something to prevent any thyroid eye disease that I may encounter in the future (had gone to opthamologist in Oct of last year and they did not diagnose Graves at that time. Endo says to hold off going again because eyes are changing as we speak). They also think surgery would have been the better way to treat the Graves because it is taking so long to be "fixed" in the 6 months since the RAI treatment and so they think I should get a second opinion on having that done.

So.. my question is has anyone ever gone for a second opinion/secondary treatment at a research hospital or Mayo Clinic after a chosen treatment and had success by doing so? Was there a benefit of even going at this stage of treatment? I have been told that in order to even be seen by one I would have to have a referral from my doctor and am hesitant to have the conversation with him about "second opinions". For the record-I have complete faith in my family doctor, and he is the one that referred me to the endo that I am currently seeing because he feels he is the only one that can be trusted to handle my situation… However I can’t say I feel the same, especially since he never tested for any thyroid issues initially. However, the endo is with the local university school of medicine and is supposedly known for lecturing around the world about his field.

Thanks in advance for any thoughts/input. This site, and the people on here, are amazing!
-Soni

[Kimberly]

#1065180

Hi Soni – Hopefully, others who have been to a research hospital will be able to chime in with their experiences. Also, you might do a search on this site for “RAI” and take a look at the experience other patients have had. The reality is that *none* of the treatment options available to us are quick fixes.

As for your family members second-guessing your treatment approach after the fact, that is soooooo NOT productive! Feel free to tell anyone who gives you grief to MYOB. The important thing now is to focus on getting yourself feeling well again!

One thought – when your doctor says you are hypER, are you testing Free T3 and Free T4 as well as TSH? *Stable* patients usually determine dosage based on TSH, but that might not be the best benchmark at this point.

[sbigler]

#1065181

Thanks Kimberly,

I don’t have copies of all of my labs (only the last two that were done) but it looks like the Free T4 was tested this last time. The numbers are TSH – .06 and Free T4 – 1.22. In April the TSH was .07, and they tested Thyroxine (T4) and that level was 10.6. I don’t see a T3 test at all.

Thanks for your input earlier. I know patience is the key here, but trying to explain that to my family when I am also frustrated because I don’t feel well is difficult. And watching the scales creep up and up and up (another 6 lbs this morning) is extremely annoying!!

-Soni

[Kimberly]

#1065182

Hi Soni – Keep in mind that T4 represents actual thyroid hormone, whereas TSH is just a “messenger” that tells the body whether to produce more thyroid hormone – or put the brakes on. If you look at your T4 levels and compare that to the “normal” range that your lab uses for T4, this will give you an idea of whether you are at the top of the range, mid-level, or the bottom of the range. This is good information to discuss with your doctor when he/she is making dosing adjustments. If your T4 levels drop too low, you will feel symptoms of hypO, regardless of where your TSH level is.

Another issue you might discuss with your doc if the TSH continues to remain suppressed is whether the pituitary gland (which makes TSH) hasn’t yet “woken up” from the period when you were hypER.

As for the weight issue, if you check out the posts from the last couple of days, you will see that there are many of us who are struggling with extra weight following treatment for Graves’. Very frustrating…but you are definitely not alone!

[mamabear]

#1065183

I dont have anything to add about the RAI, I didn’t go that route so have no clue. lol
But I can tell you that I agree, family fussing after the fact because it isn’t going as hoped for isn’t productive at all and in fact I feel it hinders progress and healing. SO telling them in a gentle way that you are past the what ifs and are only focussing on the right nows and how to go forward into the future.

As for your general dr., I had family question my general dr’s several years ago. (background) It is a dr’s office of 4 women. two internists which I see, and two pediatricians which ALL 4 of my kids see. My dh goes to someone else. As my kids grow they will if they wish go to my interists as well. I trust these women, they catch what many specialist didn’t. I have known them 10-11 years in total. I think I started going to them in 2000, it’s been a long time and many ups and downs and many days I should have had a cot in the office because my kids were in and out with illnesses. lol

Go with your gut when it comes to your dr’s. If you trust in them there is no crime in checking things out but you don’t have to put up with someone elses opinion about a dr’ they have never met.

As far as your general dr. feels about this Endo, well of course they feel that way, no one might have said hey they screwed up or I feel they screwed up. Or even better, "I don’t feel comfortable with this dr., I would like another referral for a different Endo, thank you". If you don’t ask they will never know. You ask in a way that says this is what I want , never "ask", you aren’t a child you dont need to beg…asking can simply be "I would like" "I need" "This current endo I’m not fond of another referral for a name would be great". It doesn’t take as long as you think to write a referral ! BE educated in the way you speak and speak empowering! it will get you a new referral !
(how’d ya’ll like 2 out of 3 E’s i got in there!)…(Educate, Encourage, Empower!)

[mamabear]

#1065184

I had to do this in 2parts, the site wouldn’t let me post it in one due to to many words lol

Here are two true stories, I will TRY to make them brief ……lol giggle giggle we know that wont happen!

1st story:
There is an Endocrinologist who is the Chief of Endocrinology and I can’t stand him! He is a jerk and bad bedside manner. He if were the last dr. on the earth to help me with my thyroid, I truly would give it up to God and go from there. If I had a choice with a stranger with no MD and this guy I’d go with the stranger!! yes I would ! LOL

2nd story: just happened as a matter of fact.
I had kidney stone removed and well lets just say I wound up with an infection 6 days post op. Called the Urologist , i coughed while on phone, a cough he had known I had had for weeks due to allergies. hE said temp is on 99 and since I had a cough and chills I might have an upper resperitory infection. My the time I got off phone with him I was up to 101 and called my general dr.. I got there and it was all sorted out. Had a major kidney infection and decided to see another dr. I had been to for a 2nd opinion for before I had surgery with this one(this dr. was chief of urology). He asked why I went with the 1st dr. I said "because you said he could do it and you had confidence in him and since he was my 1st dr. I went with him". I feel he did the surgery fine but his manner in which he treated this post op infection was poor and I would never see him again. The Chief of urology just looked at me and said "oh", i said "i only give one chance when it comes to how treat me in the sense of believing what i say not in the sense of my actual treatment". I told the chief that I have no problem with a mis diagnosis but someone who blows me off is someone I will never go back to. He nodded his head and continued my exam.
I also told this same thing to my general dr’s when they asked why I went to another dr., they even said but dr #1 is such a good dr. I said I have no doubt that he isn’t a good dr. but blowing me off wont happen twice. Bedside manner and the way I am treated is my #1 thing, figuring out the problem is 2nd. My dr’s laughed at me and said boy guess we haven’t done anything wrong to you! LOL. I said no you have always been open minded when it comes to my treatment for anything.

See how these stories can go so many different ways! You are your best advocate, with your dr’s and even your family. Your road should be of healing and getting the facts not wondering what should have been or could have been. YOu had RAI , now lets work to get those #’s right so you can be the best you can be!

Write down your questions and ask your general dr. and if you want a referral ASK ! If your dr. asks why you no longer want to see that dr. tell them its because you aren’t comfortable and if you question this dr. then you have to make sure they are doing the right thing.

A referral is just a document to allow you to see that particular specialist for a certain amount of time unless they find something wrong with you.

You have every right to seek a 2nd opinion! <

---

Print this part out and put it on your list so you don’t forget that or when you feel you can’t ask look at that and remember you can!

Prayers for all to work out!

[sbigler]

#1065185

Thanks Kimberly and mamabear. I appreciate you both taking the time to respond! Mamabear-I definitely relate to your doctor stories. I have had some really wonderful physicians in the last few years, but my endo’s bedside manner leaves something to be desired. I have a friend who interned with him during pharmacy school and she says that he is one of the very best in his field. It is just that everyone (including myself) questions the fact that he didn’t test for thyroid issues early on. Now I have no way of knowing how long I may have had this disease, and did it cause my kidney failure or did the kidney failure cause the disease (one of the other reasons why family is encouraging me to go for second opinion). And should I have had surgery, did the RAI not take, why don’t I feel better after 6 months, etc. etc. etc.

I agree with you both that family need to "MYOB". I am just having a hard time convincing them all that I did the right thing and that I will get better eventually, when all they have to do is look at me and know that I still am not right. I often quote the folks here on the board and their stories, but the pressure to do something more to "fix" me continues and then I start doubting myself!!

So once again-I appreciate your responses. Very helpful and supportive!

[mamabear]

#1065186

In my opinion, I feel the kidney issues "triggered" your Graves to show it’s ugly head. After having had the flu and that being my trigger and then after being ok on the PTU and getting pregnant a couple of times while not on meds and in "remission" then having Rota Virus and that "triggering" back the graves disease I’d say the Kidney Disease triggered you to finally know there was something going on.

Even now after I have had this stupid kidney stone and all the &*##*(&*(@@ that went with it and then having the severe kidney infection after it I have to get TSH level tested to make sure it didn’t trigger anything.

The reason I say this and this is my opinion is because throughout my life I was tested for Thyroid. It was only TSH but the TSH was fine each time…UNTIL that flu I had. I was tested by my gyn when I was 18, records even have written "mom insists on thyroid check have tsh done". Mom always suspected something but the tests never indicated anything. Sure explains a lot of how I was as a kid/teen.

Again my opinion, you have always had this disease, as we all have. It was just a question of when it going to show itself. It had something so severe happen to your body that it triggered your Graves to say hello. I’d have to say that it was a blessing in a way because NOW you can kick it’s butt !
Everything happens for a reason, we might never know why but it does. You never know if you were put on this earth and you have Graves disease to be in waiting room to meet someone there to talk about your story and that might save someones life one day. You just don’t know !
You have to look at getting healthy. If this guy is as good as someone you know says he is then why don’t you ask the dr. why he didn’t. You aren’t challenging him, you are asking him and if he is as good as they say he is then he will give you an answer that is honest. Even if it was simply that he wasn’t thinking Thyroid at the time.

To me, if we have Graves it was something we were born with it was just a matter of time before it showed us that it was hanging around. It has taken me a long time to realize these things and I was put here to help with my story to help others hopefully have some sort of ease or comfort for these sort of things.
I sometimes come off as an overbearing motherbear and believe me I am! But my heart is always in the right place!

if you ask your dr. you can kill two birds with one stone…oh what a horrible saying. but the point is is that you can ask him,get your answer and then be able to tell your family and they will stop nagging you and you wont be thinking about it anymore because you’ll have the answer too.
He doesn’t know what you are thinking unless you pick up the phone and ask or go to his office during a visit and ask him.

” title=”Smile” />

[Ski]

#1065187

Hi Soni,

I want to respond to this part of your post:

They also feel that a research hospital could help me to find out if I have other autoimmune disorders/issues and could possibly do something to prevent any thyroid eye disease that I may encounter in the future (had gone to opthamologist in Oct of last year and they did not diagnose Graves at that time. Endo says to hold off going again because eyes are changing as we speak).

First, your endo can test for other autoimmune conditions (don’t need a research hospital for that), but more importantly, there is absolutely no way to prevent Thyroid Eye Disease, if that is your path. The encouraging part is that only a very small percentage of GD patients end up with the worst of TED. Most of us have *some* TED symptoms.

Also, I would suggest that, if your eyes are changing NOW, then NOW is the time to see the ophthalmologist, so that they can establish the rate of change and the severity of your symptoms. For the most part, we are all told to wait and see with TED (unless the optic nerve is being compressed, which is VERY VERY RARE), but it’s definitely a good idea to build a relationship with an ophthalmologist as changes progress.

[sbigler]

#1065188

Thank you Ski for your thoughts. I was told by my endo to hold off going to the ophthalmologist because things can change. But you are correct-I hadn’t thought about the fact that he hasn’t seen me at all since I was diagnosed (he saw me a month before).So I guess it would be beneficial to let them know of my condition so that they can track any changes. My vision seems to be changing on a daily basis so didn’t want to go through prescription changes, etc. until things slow down. But no harm in keeping them in the loop.

Thanks!

-Soni

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