[Kimberly]

#1170096

Hello and welcome. I’m sorry to hear that you have experienced so many difficulties getting a diagnosis. Keep in mind that we aren’t doctors here, just fellow patients, but here are a few thoughts.

Antibody testing (TSI, TRAb) *is* diagnostic of Graves’, so if you believe this is what you are dealing with, it certainly seems it would be worth checking out.

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. The problem is that there is currently no cure for the autoimmune component of Graves’. The treatment options all focus on getting hyperthyroidism under control: Anti-Thyroid Drugs, which block the production of thyroid hormone, Surgical Removal of the thyroid (thyroidectomy) and Radioactive Iodine (RAI), which destroys the thyroid gland. So even if you do end up with a diagnosis of Graves’, your doctor will not initiate treatment unless you are clearly hyperthyroid.

Having thyroid hormone levels out of balance can absolutely affect emotions, memory, and mental processing. This bulletin from the Foundation talks about some of the mental and emotional changes that can occur with Graves’. It’s called “What’s Wrong With Me – I’m Not Myself Anymore”. (You will need to use your browser’s “back” button to return to the boards after viewing).

http://www.ngdf.org/cms/modules/files/u … 784485.pdf

Bottom line, hopefully, you feel you have a doctor who is working with you to get to the root cause of your symptoms. Graves’ is the most common cause of hyperthyroidism, but there are certainly other conditions that can affect thyroid function. A couple of good doctor referral sites are at http://www.aace.com and http://www.thyroid.org. On the AACE site, be sure and select the specialty “thyroid dysfunction.”

Wishing you all the best!

[Jeri1235]

#1170097

Thank you for your reply. I have read the bulletin already, and I can relate to it very well. My doctor talked about the RAI as an option last May but she wanted to do the scan and see the results before moving forward. Problem is the timing has always been off. I am having skin problems also, not sure if its from GD or not one reason I would like to know. I went to my regular doctor last month for two very very dry red patches on the top and ancle of my right foot that would not get any better with coritzone cream. I asked for the Coritzone tape that is doing a little better. I have had this for about 4 months now. Like I said, I have alot of possible symptoms that could be GD related. I will see my doctor February 1st, her next open time. I am going to ask her if she can at least rule GD out so that if I don’t have it I can see others doctors or counselors for help. I think just know that I may not be as crazy as I feel might make me feel better. It is not that I am hoping to have GD, because I’m not,is not something anyone would ever want to have, I just really seam to be able to relate and I am really sorry this diseaseis so difficult on everyone. I want my old self back, just like my daughter just told me last week, she misses her old Mom. Thanks for your help.

[SallyB62]

#1170098

I am a fellow patient, not a doctor; but, with the eyelid retraction, could you but your endocrinologist to order the antibody tests before your next appointment? That way, if the antibodies are high, your doctor will have more information at your next appointment.

[Jeri1235]

#1170099

That’s what I was thinking, I have been waiting for a call from my doctor since tuesday. I am thinking I might just call my regular doctor and ask her to run the test and then just send the results to my endocrinologist on Feb. 1st. I saw the eye doctor back in mid November so I don’t know if thats a long time or not, my levels bounce around pretty quickly. Thanks for the advice and I think I’ll call again on Monday just to have the test run.

[Bobbi]

#1170100

Eyelid retraction — upper eyelid, that is — is often associated with too high a level of thyroid hormone. And, it often goes away once thyroid levels are controlled back in the normal zone. It is not necessarily an indicator of the eye disease. It makes our eyes appear more prominent — that "Graves’" stare — but they do not have to be protruding to produce the effect.

The dry skin patches on the foot and ankle, might be pretibial myxedema, which would need to be diagnosed by a dermatologist. Or they might very well be just dry patches. I have had itchy dry patches from time to time, and they are helped — I keep them under control — by using strong moisturizers suggested by my dermatologist. I actually use two moisturizers. I apply them to WET skin immediately after showers or baths. One is called AMantle, from Doak Labs. It goes on first. Second, I use an Origins product called Precipitation Extra. They really do a good job together. And there might be other products that would produce the same results. When things were at their worst, I would apply the moisturizers before bed and wrap my legs in plastic wrap, so that the moisture would be held in all night. That really helped too. Do NOT do this, however, if you are applying cortizone creams without talking with your doctor first.

[RebeccaJT]

#1170101

Hello there,

Greetings from England. I am not a doctor but just to chime in with the others regarding antibody tests – especially TRab, and TPO (or Anti-microsomal) antibodies. Also a TSH test is not a reliable measure of what is going on in your body if you have hyperthyroidism, so they need to be testing both your T4 and T3.

But just to say I had exactly the same thing. T4 never quite went out of range, T3 spiking of it’s own accord – sometimes up, sometimes normal and a suppressed TSH. This sounds like it could possibly be Hashimotos disease to me which you can have along with Graves – a high TPO antibody reading would confirm this. Hashitoxicosis can make you feel INSANE and might explain why you are feeling awful even when your blood is normal.

You can read my story about Graves, Hashis and TED (I also have eye problems) in my thread ‘What to ask Surgeon re Thyroidectomy’ – particularly the early posts.

My Hashi diagnosis was missed (despite two very high TPO antibody readings six months apart right at the beginning) and I was put on ATDs which, of course, did nothing for the spikes of T3 because I had Hashis. This meant I was over treated on drugs, fat, sluggish, miserable and hypO – having these awful T3 surges, sometimes four hourly, causing awful rage, panic and crying attacks. It turns out it was also the INFLAMMATION of the thyroid gland itself (severe thyroiditis) not just the levels of hormones in the blood that were making me feel wretched.

Please do insist that your doctors take you seriously and do ask for all the copies of your results and keep track of your blood yourself. When I finally saw my thyroid surgeon he ran his finger down a set of 20 blood results (that I’d kept) and diagnosed me in less than a minute. It was the intermittent T3 spikes that did it!!

As I have eye problems (TED not just lid retraction, which has come and gone with my thyroid levels), RAI was counterindicated and I had to have surgery. But this forum is amazing, you will get some really sound advice and sharing of experiences from other patients.

Best of luck

Rebecca

[snelsen]

#1170102

Hi
Rebecca,
so glad you have finally received good care, had your surgery. You have accomplished a lot since you first wrote. With all your experiences, you are already helping other people on this forum, and that is wonderful!
do keep writing. everything about Graves’ is slower than we want it to be. remember that you might be a bit more tired than usual after your surgery.
hirley

[Jeri1235]

#1058803

Hi,I am new here. I have been reading some of the post on here for a while now. I have not been diagnosised with Graves as of yet. I have been dealing with alot of the symptoms in the last few years, well I guess the first one was about 28 years ago. The doctors found my thyroid was inlarged or a goiter when I was 18yrs old (1982). Every new doctor I have ever seen since always ask if I knew I had a goiter. Back in late 80 early 90s I did have a scan of it and it really doesnt grow. They never found any reason to look at the goiter for problems. At that time my tsh test were always in the normal but low range, never above 1.0 mostlly about 0.5-0.8. In 2006, I was questioning my mental state of mind because I was having anger outburst and I just felt out of contol, I went to my internist they ran some blood work and sent me to a shrink to see if I was bipolor, the tsh test came back showing I was hyperthyroid. The shrink felt the angry problems were from the thyroid. By the time I saw my endoceinogist my tsh level was normal. Over the past year my tsh has been like a yo yo going normal to as low as were have recorded as 0.0018. The doctor wants to do a radioactive scan but only when its in the hyper mode. But by the time I get into see her it has already gone back to normal this is the 3rd time in a year. By the way my free T3 and T4 havealways been in the normal range only elevated in the test when I am in the hpyer mode. So as of Dec. 23rd the test showed my tsh 0.366; T3 2.9( normal 2.0-4.4) and T4 1.18( normal 0.82-1.77). I don’t understand this. I also saw an eye doctor in November and he asked me if I had graves because my eyelids retract some and they are very very dry. I already knew they bother me just didn’t know why. As for my mental state, I think I am going to lose my mind. I have such erratic behavior and feel very disconnected. i have damaged so many relationships this year and can seam to controll myself. Antidpressants have not work at all. So before I go back to get more mental help I would really like to rule out the graves’ disease. If the doctor does a TSI or TRAb test will that confirm if I have Graves or not? I have lots of other symptoms that maybe from Graves and would like to rule them out before seeing any more doctors for those.I have read the page on information for family and friends, I just really want to rule this disease in or out so I can look to getting myself some help before I destroy my family. Thanks for listening.

[Jeri1235]

#1170103

I had my regular doctor run the tsi,TPOAb and the Thyroid Antithyroglobulin Ab test last week. I will be taking the test results to my thyroid doctor on Feb. 1st. however the results are all in the normal range. I don’t know if they change are are always the same since this is the first time I have had the test. TSI is 50 with the avg. 0-139; TPO Ab is <6 avg. 0-34; and Thyroid Antithyroglobin Ab is <20 avg. 0-40. I have been feeling alot better than I did back in December so I believe my TSH will be back in the normal range when I see the doctor on the 1st. What I am lead to believe is that with these results I do not have Graves. But I will confirm this with the doctor. Thank you everyone for the help on this site. I guess I will have to let the doctor figure out why my thyroid levels are like a yoyo.

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