[hansontrish]

#1018769

Hey guys…. I have a few questions for you. I kinda need some advice from you. You all seem to know what your talking about but for some reason all of this seems to be rocket science to me… I don’t understand any of it.

I’ve been having problems with my doctor and the information that he gives me. I’m at the point where I want a new one but I just stay with him because I don’t want to go through all of the test and stuff again. I called the office to get my results sometime after the 8th of dec… then I had to call again, and I finally got them today. He half explains things to me and when I ask for clarification he just repeats what he said before, which makes no sense. When I asked if I could talk to a nurse about some of it, they told me that no nurses that work in the endo clinic know anything about thyroid issues.

But here are my lab results for the last 2 draws, which are also the only 2 draws that I’ve had with him since I started seeing him in october. I have had an uptake and scan done but no one told me what the results were for that. I do know that I have 2 nodules, one in each lobe of the thyroid, and the endo doc said that they were not impressive… what ever that is supposed to mean.

10/28/09

T3 total 2.21
Thyroxine Total 16.1
T3 Free 6.3
Thyroxine Free 1.84
T3 Resin Uptake 38
Thyroid Stim Imm 4.4
Thyroperoxidase AB 805.4
FTI 6.1

Lab results 12/8/09

TSH 0.01
Thyroxine Free 0.99
Thyroxine Total 9.7
T3 Resin Uptake 33
Thyroid Stim Imm 4.0
FTI 3.2

I’ve only had one other draw for TSH and that was with another doctor before I moved, and they have not sent me the results either. I know most of them are high, but are they bad??
I started on Methimizole shortly after the 1st draw, my doc said to cool down the thyroid. I have been taking 40mg once a day since around the 1st of Nov. I am also on dilt xr and lisinopril for a really high BP. I have an RAI scheduled for the 11th of jan, and will go on enderol 6 days before the procedure, and stop taking the methimizole and also cut my dilt xr in half for a few weeks…. then he said after the procedure I could stop the enderol and there really was no need to take the methimizole and that we would just play it by ear. Is that wise? I’ve seen lots of things that say that it could take a long time for the ablation to get you to go hypo.
I guess I’m just asking for a trusted opinion about my doctor and what he is trying to do, I’m really lost, and can’t figure out how to un-jumble all of this. I don’t even know what most of these numbers mean, and which drugs are supposed to be doing what to which numbers.

If there is any guidance ya’ll can give me?? I would really appreciate it.

Thanks so much,
Trish.

[bradybunch6x1]

#1066975

Trish,
I’m going to give you my opionion, that would be to get a different doctor. If you can’t talk with the man, then really there is no reason to think you will ever understand your medical problems. Find a doctor you can talk with, and one that will try to explain things in a way you understand. As for the tests, I can’t and wouldn’t even if I knew more about them say anything. It really is something you need to have explained to you by a practicing doctor. It really sounds as though you think you need a different doctor, but you are trying to assure yourself of the reasons, and I think you have plenty for that.
Good Luck,
Valarie

[Bobbi]

#1066976

You should not trust anyone online to interpret your test results for you, and give you an analysis of your condition. Only your doctor can do that safely. There are more things to consider than just the thyroid numbers, for one thing. So if you are concerned, try to get an appointment with another endo to get a second opinion. It kills two birds with one stone: you get another, experienced doctor to give you an opinion, and you can "audition" him/her to see if the explanations make more sense to you. I get the sense that switching doctors isn’t an easy option for you. But getting a second opinion is one way of meeting another doctor without necessarily committing to them before you know whether or not you like them.

As to some of your other points:
It is standard practice to go off the antithyroid drugs (like methimazole) a week or two prior to any RAI procedure, in order to open thyroid cells up to the treatment iodine. You want the thyroid cells to be thirsty for iodine, and to soak up as much of the treatment iodine as possible. For the same reason, you should be careful of iodine intake during that time, eliminating shellfish, etc.

Taking the inderal when you go off the ATD (antithyroid drug) 1) helps to protect your heart from the effects of excess thyroid hormone and 2) helps to make you more comfortable. It makes you more comfortable by helping to lessen the tremors, and it helps a bit with the insomnia. How long you take it after RAI usually depends upon the patient. Many of us take it at least through the "dumping" period after RAI, when we go more hyper than normal for a brief period of time. As with any drug, there are side effect issues, and with some of us we cannot safely take it for very long. (For example, I have asthma issues, and if I had had an asthma attack while on the inderal, my doctors would have had a much, much more difficult time treating the attack. So, for me, taking it was riskier than for the normal person.)

As to whether or not you would resume taking the methimazole, that, again, depends upon the patient. I never was put back on an ATD after RAI, but other people have been. The medical condition of some people may warrant the extra protection of the ATD, while for others it is safe to stop the drug.

As to the amount of time that it takes to go hypo after RAI, that will vary, too. Try to remember, though, that the folks who post to online boards the most are the ones who are newly diagnosed, and the ones for whom complications occur with treatments. You will see problems more in online boards like this one than might be the "norm" in the real world. Yes, problems do occur. But the online world tends to skew things to the side of "problem" rather than to the side of "WOW, this treatment worked really well!" This board is a bit different than some because the moderators typically have gotten well again, and can give that perspective. But the regular posters are always people dealing with problems. You can get a bit of perspective on things by going through posts from six months ago. The names will be different; the problems will be the same. Once folks get well, they typically do not spend much time posting to boards like this one. They go back to their lives. You will see an occasional post from a voice from the the past, but usually it is only one or two.

So, Trish, try to keep your chin up. This disease of ours is very treatable. It is the normal thing for people to get well again. The treatments DO work.

[Sjefferys]

#1066977

WOW it’s been awhile since visiting site. I suppose this is because accepting and not having day to day problems. As I type this now the confusion is my lack of accepting. I was diagnosed 2002, had RAD in 2 yrs GED set in. Had the surgery been doing well, here lately the pain and displeasure when I look in the mirror causes sadness.
I feel so alone and sad. In Oct 09 I started BHRT injections as well incorporate Adrenal, DHEA daily supplements. I feel it is working, but now I’m not sure.
Thanks for listening.

[Sjefferys]

#1066978

Thanks for responding I never intended to be a the one using WOW factor. My purpose was to find help. I am very sorry if I insulted anyone.

[hubb]

#1066979

As you go through the process of trying to figure out what is happening to you, and then what you are going to do about it, one thing is for sure; you have to feel comfortable with your doctor. You have time- You have only had 2 blood tests (if I understand correctly) and already you are scheduled for an RAI?? Do you feel rushed? I was diagnosed this past April- I have, like so many others, done extensive research. One of the things I learned is that, although many people share common symptoms, everyone has their own story; stories that are so individualized that it is impossible to find a "match" to your own situation. The answer is: There are no answers- What you are left with is what is going to work for you in your unique situation- THAT is why you have to have a doctor you trust and can understand- I wish you the best-

[Sjefferys]

#1066980

I am very thankful to be apart NGDF. I learn more each time. I am curious is there a difference taking RAI (horse pill) or surgery to remove thyroid?
Are you less likely to have GED if you opt for surgery? For some reason I think RAI created my GED.
Even though it’s too late for me does anyone have knowledge with the 2 options?

[Bobbi]

#1066981

Sjeffreys:

RAI does not cause the eye disease. The eye disease is caused by antibodies, just like the thyroid disease is — and these antibodies are likely to be related if not the same. RAI has, however, been shown to stimulate an autoimmune response, which raises antibody levels, and in a minority of patients (less than 20%) causes symptoms of eye disease to temporarily increase. It is thought that most of us with Graves have some degree of eye disease, even if the symptoms are not overtly visible: they have, however, been noticed in soft-imaging studies (like MRIs, ultra-sound studies, etc.). Surgery has not been shown to stimulate the immune system in the same way, so people with existing eye disease are sometimes directed to surgery rather than RAI.

[hansontrish]

#1066982

Hubb: Yes I’ve only had 2 blood draws and I just started on the treatment in Nov, ADT’s. I do feel rushed, but at the same time, I’m the sort of person who just wants to get things back to normal as quickly as possible. I’m finding out with this lovely disease that quick is not something that can be used in a sentence to describe it… ” title=”Smile” /> Thank you for the advice.

Valarie: thanks for the advice. I’m kinda on the same train of thought as you, about the doctor thing….

Bobbi: thanks again for the email and the advice… I take all of it to heart.

You guys seem to be the ones I turn to for answers to the questions that I know deep down my doctor should be answering. Getting another doc is not really an option at this point, I’ve tried for the last week, but can not seem to get anywhere. I will keep it up though. I did however get an eye doctor appointment…. FINALLY!!!

All of your information is great, and I value each persons advice. I have a friend who I talk with daily who has graves, and I pass a very good amount of info on to her…. She is thankful that you guys are around, as am I.

Thanks again for all your input.
Trish.

[snelsen]

#1066983

Hi Trish, I am wondering if it would be helpful for you to have a second opinion, or try another doctor. I think the experience would give you confidence in some way, either validating the thoughts you have about your present endocrinologist, or realizing, from these posts from all of us, that there is no specific answer. That most people have similar experiences, and, as one person mentioned (I can’t reference the post,) when we are hyper, we are not our baseline selves. I know I was hard to live with, with my voracious appetite, impatience on occasion, and wanting to keep the house at a temperature that was right for me, but froze everyone else.

But, the purpose of this post is to ask you why getting a second opinion, or simply trying another endo, is not an option? Is it because you live in a community where there is ony one endo? Is it because you need a referral? Is it because your insurance won’t allow it? Is it because you called an office, did not get a return call right away?
This is pretty much up to you. Are you unhappy with you endo because you feel you need answers, and you didn’t get them? Well, join the club we all belong to. There are not finite answers. If you live in a larger city, there might be a thryoid clinic? If you don’t have a clue whom to call, I suggest asking your PCP, or any other doc you go to, to ask around for another name. And it takes a fairly long time go get back to the baseline you This is a tough disease, for we are all over the map emotionally some of the time. Rest assured that I am in the middle of all of this, plus severe eye involvement, and I have learned to know that in about a year, or a bit more, I will be fine (that is because of the eyes.)

The frustrating thing @ this is that it takes a long time to "get it right" in terms of meds and
how you feel. You will have lots of support on this site, glad you found it.

[snelsen]

#1066984

Forgot to say that you don’t have to have all tests repeated if you go to another doc, but you do need to take your labs, the report of your scan, and whatever other tests you had. Of course, it is possible that the endo might want to draw labs to see where you stand at that visit.

I am sure everyone on this board understands your confusion @ all this new information, and about having a thyroid issue in the first place. There is absolutely no reason for you to have a good grasp on all if this at this time. You WILL be ok, and with the passage of time, you will have learned and understood a bit more about this thyroid stuff. Having said that, the endocrine system is very complex. It might be helpful to you to write down most of the questions you had in your post, and keep adding to them. Another suggestion is to take someone with you to your office visits, have them take notes, and remind you of your questions. In conclusion, I am someone who is going through all of this right now,as many of the folks are, who write to this board. I think one of the moderators said that when people on on the other end of this, and have resumed their "normal" lives, they tend not to write.

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