Saw Neuro Last Wed....

[Jeanie60]

Hi All,

I saw my neuro last Weds. and told him everything that is going on and he told me it appears to be an another autoimmune disorder going on. I don't know if dysautonomia is autoimmune or not, but while poking around on google, I looked up some thyroid issues. I have a lot of symptoms that may be considered thyroid. My average temperature is 96. At times when I take it it can be as low as 94. I seem to be very sick during those episodes. Yesterday wasn't too bad and I was in the 97's. I think there may be a pattern that I'm finally realizing.

From what I understand it is not impossible for a persons body to teeter between hyperthyroid and hypothyroid which can give reason for having terrible sweats then being cold and the cycle starting all over again. Many things that I currently have going on seem to fit in this catagory. My next appt with my rheumy was Oct. 16. Twice my neuro said during my appt. that I need to call the rheumatology clinic and get my appt bumped up sooner. He told me to call and tell them that he is concerned and that the 16th is too far out. My new appt. is Oct. 2. If my rheumy doesn't figure this out I am going to ask her for a referal to an endocrinologist. From what I understand, certain thyroid problems can be extremely tricky to figure out. Especially when it rocks back and forth. Because a person can be in between hyper and hypo and they call it euthyroid in between. Many tests can come back normal when there is big problems going on. Has any one here experienced this? From what I understand a person can have a tumor in the neck and CT's and ultrasound may not even see it. This is Riedel's thyroiditis. Since having a tumor removed from my thymus, this is certainly one concern for me. But Hashimoto's thyroid is another, rocking between Graves thyroid. It certainly is an interesting subject and I can't help but wonder if this is what is going on with me.

I have had several relatives with thyroid problems, so I think it is very possible that this may be what is going on here with me.

I would be very interested to know if any of you have had thyroid problems dx and whether you had a similar experience.

Thank you for your help.

Jean

[Tammy]

Hi,

I've only had problem with Hypothyroidism according to my blood tests so I'm on Synthroid, but everytime I go into to my regular physician and he listens to my continued issues with my health, he's always suspecious of my thyroid levels being off, so he orders more blood tests but they are always within range, but my mom has hashimoto thyroid problems and throughout her life has swung between being low and than high from time to time and has some sort of radition treatment to kill part of her thyroid gland even though she was hypothyroid for the most part and is back to being low again. So I think it does mess with a persons system pretty bad even when on meds to control it!

Take care,

Tammy

[Jeanie60]

Thanks for your input Tammy. I'm not sure how they can catch it when it has the ability to flip flop from one to another.

I was able to talk to my rheumy this afternoon and she said that she is concerned about adrenal insufficiency and/or thyroid problems. She has set up an appt. with the nurse practioner in her office and will follow up on Monday at my regular appt. Hopefully I can start to find some things out yet this week. Keep your fingers crossed for me that I can find out some information as to what is going on.

Best wishes to you too. It is so frustrating, isn't it?! You know something isn't right, your body just tells you the best it can, but sometimes not always good enough for these tests to pick it up. It took me almost a year for my doctors to find a tumor (thymoma) in my chest after complaining for months. One doc even took X-Rays on two different occasions and told me eveything was normal. Come to find out the tumor had presented itself on the X-rays, but the doc I had at the time didn't feel it was worth mentioning to me. Radiologist had recommended a CT scan both times and my doctor didn't feel it was necessary. Finally my rheumatologist that I had at the time did his own X-ray and zeroed right in on it. I don't know what the other doc was thinking. Unfortunately, my rheumy moved out of the country shortly afterwards, but he sent me to the one that I am seeing now and she is very good. So I have lucked out there! LOL

Take care,

Jean

Thanks, Jean

[Tanzanite]

Thyroid blood tests tend to lag behind the symptoms so unless your tests results show a real problem, they don't treat it, it's crazy. The 24hr urine test for T3 and T4 tend to catch it though so ask for this if you can, along with a blood TSH and a must have is a thyroid antibody test. Mine was extremely high.

Saliva tests are better for adrenal insufficiency than blood tests. The blood tests tend to be better to establish whether you have Addison's or not.

I also get the hot thing, all the time, though last few days I've been cold but then I've been battling with really bad stomach issues this last week. Last night I woke up boiling hot and sweaty. No one's put it down to anything though.

By the way, if you get some adrenal and thyroid glandulars they help to support them but doesnt give you any medication. Don't take them before tests though as it'll interfere with the results.

[Jeanie60]

Hi Everyone,

Thanks Tanz for the advice. I went to see the Nurse Practioner today that works with my rheumy. She is doing a battery of tests. I didn't get your message until I came home so I didn't get a chance to ask about the saliva test. For thyroid, I know she is doing a TSH and a T4 Free test. There were some tests I have never heard of. She did a cortisol test this afternoon and then I will have one done at 8 am tomorrow. I guess the best time is in the morning, but there is some sort of formula that they use for afternoon tests so it isn't impossible to do. I suppose because if a person is in a crisis they can't wait till morning before treating to get the labs. Anyways, I am to start back up on prednisone again after my blood draw tomorrow. They did the blood pressure test laying, sitting and standing and I think that went well. I don't think they are leaning toward dysautonomia at all, but the thyroid/adrenal/maybe pituitary gland way. Time will tell.

I have had the sweats and chills for the last several days and wouldn't you know, today I did pretty good and temp was fairly normal. I'm thinking there could be a lag in blood changes.

She also said that I am getting infarctions on my toes. I'm not sure what that is, but she said it leads to tissue death and to keep a vigilant eye on that.

I'll let you all know how things work out.

Thanks again for kindness.

Jean