[diana]

#1058813

I recieved the diagnosis from my doctor yesterday but am really unsure if it is a correct diasnosis.
I am a 48 year old female that is not one to go to the doctor, however just a few months ago I had to go because of some serious issues that arose from a constant menstrual cycle that sent me into acute anemia. I was told then that my thyroid had almost completely shut down, my TSH was 94.15 which my doctor informed me was the highest he ever had seen. I started on synthroid and feel great, like myself again. I had my followup visit yesterday and he increased the strength of my synthroid which I was expecting him to do. But he also told me I had Graves Disease. From everything I’ve been reading I’m more confused about the diagnosis because I am hypothyroid, not hyperthyroid. Does this make sense ? I hope someone can help me to make sense of this…

[Kimberly]

#1170145

Hello and welcome!

Graves’ is an autoimmune disease, where the body’s own immune system launches an attack on healthy tissues. The primary targets are the TSH receptors on the thyroid gland, the muscles and soft tissues behind the eyes, and occasionally the skin.

Patients who are diagnosed with Graves’ are *usually* hyperthyroid at the time of diagnosis, but not always. In more rare cases, Graves’ can cause blocking of thyroid hormone production rather than stimulating thyroid hormone production.

I’ve heard different reports from different sources as to whether it is a completely different antibody that is causing this blocking effect, or whether it’s the same antibody, but it is binding to the thyroid receptors in a different way.

Unfortunately, there isn’t a good treatment available for the autoimmune component of Graves’, so the treatment options focus on getting thyroid hormone levels back in the “normal” range. Hopefully, you have a follow-up appointment scheduled in a few weeks to re-check your labs and see if the new dose is the correct one for you. Take care!

[lissaj]

#1170146

Hi. I am also 48 and over the last year I have developed unilateral Graves eye disease. I also have Graves Disease antibodies. However my thyroid levels keep coming back normal range or slightly hypo.

I feel awful though. Terrible fatigue, joint pains, heat intolerance, irritability, weepiness, depression, the whole gamut. But I feel like my doctors are more interested in my test result numbers than how I feel.

My mother had Graves Eye disease in the 60s just after I was born and became part of a clinical study.

My older sister had papillary thyroid cancer.

My brother had vitiligo.

I have gone through 4 endocrinologists because the clinic I was going to kept firing them. I have since switched to a Clinic a hundred miles away in a major city that is one of the top 15 endocrinology clinics in the US. My new doctor is better than all the others put together, but I still feel as if he is more concerned with the numbers.

He did say that I have a “heterogenous” thyroid and that this indicates some sort of autoimmune problem.

My eye has proptosis, lid retraction, diplopia to the side and upward gaze, and my eye doesn’t completely close at night.

Does anyone else have this problem of feeling that doctors put too much emphasis on numbers, and what advice would you give?

Thanks,
Lissa Jane

[snelsen]

#1170147

Couple comments, cause I am running out the door.
It is super super frustrating to feel like you feel, have the docs dismiss it. You have a lot of symptoms. ARe you taking meds? What are they? Since he seems good, I am wondering if communication is set up so that you are to report your symptoms (and the medications you are taking, if you are taking them) Generally (I am operating pretty blind here without know if/if not here are meds invloved, presuming there are.) But if you are on ATDs, he should be hearing from you about every two weeks, and you might need higher dose of ATD, are you on a beta blocker? That helps with tremors, and if you ahve a fast heart rate, it should get slower.

Just a note-Graves’ and TEd are both autoimmune diseases. The treatment and management for each is very different, for they involve different antibodies which are messing up our eyes and your thyroid.

You have significant eye symptoms, and I suggest you ask around and find an eye doc who is familiar with, and treats TED (this does not include your endo) and optimally, you should go to neuro opthalmologist. I suggest, too that you read about TEd on this site, and the experiences of all of relating to these two miserable diseases. The good news is, that there is a light at the end of the tunnel, and hope for a normal life again with both of them.

I imagine the labs for Graves’ are TSH T3 and T4? that is what should be ordered. I am glad you found an endo that is an improvement over the ones who have bbeen fired, but sorry it is so far away. It is important to develop good communication with the doc, assuming he his a good endo, and be sure to sign the release of information forms, so that you receive copies of all your labs, test and reports of the endo. Having your own personal medical fine is always best. Do write with more info, this board is wonderful.
Shirley sorry, the cursor won’t go where i want it to go. always best.

[lissaj]

#1170148

Hi. No they haven’t put me on any thyroid meds yet. Just lots and lots of Vitamin D. My vitamin D level started out at .5, now it is up to 45 after 2 years, but I have been taking 300,000 units of Vitamin D. My new doctor is scaling me back to 200,000.

I have elevated PTH hormone levels, but normal calcium.

They gave me a blood test for Celiac, but it came back negative. However my new Doc thinks I probably do have Celiac. He is sending me to a GI for tests and a biopsy of my small intestine.

I had several ultrasounds of my thyroid and parathyroid. I was told I had nodules, but the position and size was always changing. My new doctor says I don’t have nodules but a “heterogenous” thyroid and areas that can look like nodules but aren’t.

My GP thought I must have a parathyroid adenoma but none of my other doctors have thought that was the case.

I am a bit frustrated with my odyssey from doctor to doctor to doctor.

But I am really happy that I have found this forum. Nice to be in touch with folks who can empathize.

Thanks for your help.

Lissaj

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