[Shanonian]

#1018466

I have been chronically sick and my Dr. ran blood work. When the results came back, I was informed that the tests show I have a hyperactive thyroid and that it is probably being caused by Grave’s disease because the results show my body is attacking itself. I was also told that my Vitamin D is extremely low and I need to take Citracal 2x a day. Before I left the office, I was given a follow up date with an Endocrinologist (one I had seen last year and was told my blood work was ok) and an appt for a Thyroid Uptake test. Blood was being drawn once again before I left. I then came home and looked up Grave’s disease. I do indeed have several of the symptoms. In fact, I’m already being treated by a Cardiologist that has me on Atenolol and Florinef. I have such extremes with my blood pressure and pulse that he has scheduled me for Autonomic function tests. I’m 35 yrs old, my weight is down to 99 lbs (lost 30 in 6 months with no change in diet but huge appetite), I sweat a lot, I have tremors and the list goes on. I can’t seem to stay free of infections. I had gone to this same endocrine Dr. last year, based on a referral from my Dr. then…just for these symptoms alone. I was told at that time there was nothing significant in my numbers. So, I went to see the Endo again yesterday. He goes over my symptoms, checks my thyroid and compares the blood work from my Dr.’s office and the blood work from last year. He was puzzled because he said my blood work from a year ago was NOT perfect and that his assistant (that saw me at that time) is no longer there. He also confirmed that he also is confident I have Grave’s disease but wants to see the scan before treating. Today, I get a call from the nurse from my regular Dr. She said the latest blood work came back okay and that I didn’t need the Uptake scan after all. I was confused and asked how that could be a mistake. She said that the first test was very thorough and could show a false-positive but this latest blood work was just a standard thyroid test and my numbers look okay on it so there must have been a mistake. My question is this, I AM very much sick and I do need answers. I feel like I’m fading away and my quality of life is being affected. I called the Endo office to inform them what the nurse said. The lady I spoke with was very rude and said are you going to listen to that Dr. or this one. This sort of thing happens all the time. So, I agreed to continue to follow up with the endocrine Dr. because I don’t want to take any chances in the event that I do have Grave’s and it needs to be treated. I am tired of being sick, poked and going back to the Dr. On the other hand, this appears to have a serious course of treatment and I don’t want to be treated for this disease if I don’t have it. I’m not sure what specific tests were run this time around but can you please explain how the first test would indicate Grave’s but not the 2nd test and which should I believe? :” title=”Question” />

[Kimberly]

#1065039

Hello – Welcome to the boards! Looks like you had 2 different posts in the queue with the same info, so I will respond to this one and delete the other one, so that you can get all of your responses in one place. (All initial posts have to be manually approved, in order to keep spammers off this board.)

Sorry to hear about your frustrations. If you can get hard copies of all the tests that you have had done, that might help sort through some of the confusion.

Graves’ Disease is the most common cause of hyperthyroidism, but there can be other causes as well…so you definitely want to make sure that you have a correct diagnosis before beginning treatment.

As you know, Graves’ is an autoimmune condition, where our own immune system goes haywire and starts attacking healthy tissue. (Primarily the thyroid, but often the cells behind the eyes and occasionally the skin on the front of the shin). The attack on the thyroid stimulates the gland and causes the body to pour out extra thyroid hormone, making us hyperthyroid.

I can’t explain the conflicting advice from your two doctors, but I do want to mention that there is one particular test that causes a lot of confusion. The TSI test is a measure of how much stimulation the thyroid gland is receiving from the immune system’s attack. A result above the “normal” range indicates that there is enough antibody activity going on to make us hypERthyroid. However, a result below the “normal” cutoff still indicates the presence of the antibodies that cause Graves’ – but *in theory*, the antibodies should not be causing enough stimulation to the thyroid gland to make us hypER. (I say “in theory”, because I had a TSI below the cutoff at diagnosis, and I *was* hypER. The next time I had TSI tested, the value had quadrupled). Medical professionals who are not familiar with this test can sometimes mistakenly assume that a “normal” result means that they can completely rule out Graves’ Diesease.

I can’t tell you if you have Graves’ or not, but hopefully, you will find a doctor who will take your symptoms seriously and keep searching until you can get a proper diagnosis. You *deserve* to feel good again!

Finally, please keep in mind that if you *do* have Graves’, you will need to establish a long-term relationship with an endocrinologist as you work to stabilize your thyroid hormone levels. I’ve had more doctor’s visits in the last 2.5 years than I did in the previous 20! So you definitely want someone on your team who will treat you with courtesy and will be responsive to your questions and concerns.

Best of luck!

[Shanonian]

#1065040

I apologize for the double post. Thank you so much for the reply and the information. My regular physician called me back today and advised that I should continue with the Uptake scan and proceed with the Endocrine Dr. after all. She said she apologized for the confusion. Hopefully, this will get sorted out soon. I watched some videos about Graves and have learned a little why a test (maybe the one you describe) would have fluctuations in results. It’s because the disease comes and goes and some people could even have Hypo moments or normal periods. Also, my sister and mother have very similar symptoms. My sister was at the Dr. today and mentioned me and if he thought she could have this condition. Her Dr. agreed based on her having Hypoglycemia and several other symptoms. He ordered tests. I will ask for my test results and try to learn more about what they mean. I appreciate your insight and this forum is wonderful. ” title=”Very Happy” />

[cynthia]

#1065041

I can understand your problem had similair problem not 2 dr. different but with the labs when I was truily sick couldn’t get to dr. for labs too sick to drive and when I did go my ths was high normal???? anyway, symptoms would come and go for the next few years ….. have RA and Diabetes 2 so was confused by the symptoms also on fental patch for pain so because of all my meds thought it might be meds to make it worse am RN and hate going to dr…..anyway get on treat ment ASAp now am in horrid shape and sick all the time also found out that some of the hyper symptoms don’t necessary have to present in correct way ….case in point I had severe cold INTOLLERANCE live in louisiana and love to go out side and cook in the sun , house air conditioner rarily goes below 77 degrees and don’t use car air even though it is 95 degrees outside….crazy ..huh!!!! when I finally gave in and went to endo requested blanket and froze she told me not usalL but is indeed a symptom. HOPE YOU GET FEELING BETTER QUICKILY CB

[sbigler]

#1065042

This "sort off" happened to me but long after I was treated for Graves. My lab’s were inadvertently sent to my family doctor and he said to call my endo immediately to get my meds adjusted because I was very hypo. However, when I finally got copies of my labs to the endo he REDUCED my meds because i was still hyper. I have all the faith in the world in my family physician, but I think he interpreted "low" warnings to be "low" thyroid. So it pays to follow the advice of your endo because of their expertise in this area.

Best of luck to you and hope you start feeling better soon!
-Soni

[Shanonian]

#1065043

It’s been a while since my last post. I sincerely appreciate everyone’s response! Well, I finally followed up with the Endocrine Dr. I was sent for a Thyroid scan. The scan came back elevated but without nodules or any cancer. The Dr. decided to treat me on a low dose of Methimazole. He said I have Grave’s for sure and that I also have a toxic diffuse goiter. So, I tried the Methimazole and the PTU but broke out in hives from both meds. When I went back in to discuss the Iodine treatment, the Dr. decided to check my numbers again first. To his surprise, my numbers are now in the normal range and I am also not showing any antibodies. I’m still not sure how I can have Graves without antibodies? Anyhow, I’m thrilled by the news. I don’t have to go back for another 6 months to check my thyroid again. They said I must have went into remission. I have noticed that I have gained back 5 pounds which is really great, considering that I’m now down to nothing. I still have all the other symptoms though and hope they go away. I’d like to come off of the Beta blocker. I also hope to stay in remission but I hear that’s it’s only expected to be temporary. This is still confusing to me but I suppose I should be very grateful at the moment.

[Bobbi]

#1065044

Another name for Graves is, somewhat technically, diffuse toxic goiter. What that means is when they do a scan, they don’t find clumps of cells over-producing, but the entire thyroid seems to be involved in whatever is going on (ie a diffuse pattern of activity). Toxic, of course, means it’s bad for us. Goiter relates typically to an enlarged gland. Anyway, there are a percentage of people who have diffuse overactive thyroids that do not have elevated antibody counts. It doesn’t matter. Too much thyroid hormone makes us very, very ill and we have to get rid of it.

Technically, as well, remission is defined as a "temporary" cessation of symptoms. Remission does not mean "cured." It means, "OK for the moment." And some of us have experienced it. It can last a fairly long time (years). The thing is, to pay attention during your annual physical that they are doing thyroid panels so that if you lapse, you will find it out sooner, rather than later.

I would recommend that you insist on receiving a copy of any blood tests your doctors run on you. Had I done that, early on, I would have noticed that the "normal" blood test I had had reported to me by a nurse was, in fact, seriously abnormal.

And, lastly, congradulations on having normal labs. I hope you are feeling well for a long, long time.

[Shanonian]

#1065045

This site is wonderful and I appreciate all that I’m learning. I will say that I empathize with those battling any serious illness because quite honestly, I felt like I was dying at certain times and I could have been worse off for sure. My life was affected in so many ways while I was sick. I can only imagine what others have experienced and I empathize. I can also see the warriors out there, such as yourself, that seem to have endless patience for us babies. Thank you for your support, the knowledge and the friendships. I will keep up on my numbers and learn more about this condition. You’re absolutely right….I’d rather be proactive. I’m going to learn how to interpret the results of my tests and stay on top of how I feel. I will keep my progress updated and continue to read the posts here. Thanks again! ” title=”Very Happy” />

[Bobbi]

#1065046

Actually, "interpretting" lab results can be trickier than we might suspect. But, at least if you look at the lab results yourself, you can ask follow-up questions from your doctor.

[Shanonian]

#1065047

I’ll agree with that! I think the entire illness is tricky. If it weren’t for this site, I would be so much more confused. The Dr. doesn’t really take the time to explain any of this. You get one-line answers to any questions but no detailed explanations. It will take me a while to figure it out but I will work at it and I’ll stay in touch here. This is a great support group. Thanks Bobbi! ” title=”Smile” />

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