what tests to have

[laurfe20]

What test should I have:  I had Grave's, then had RAI, eventually became eurthyroid for only a couple of weeks, and now I was told that my TSH is 41.  I feel lousy.  My eyes and face are swollen and I am soooo tired.  The only thing that the endo checked off on the script for bloodwork is:  T4 level and TSH.  They haven't mailed the lab report to me as requested.

What should I insist upon?  Is he missing anything?

I was supposed to wait until August for a blood test, but he gave me a reusable script, and the lab gives it back to me.  My family insisted that I go to have bloodwork last week when I was weak, swollen, and very sick.  Glad I listened.  It was before the holiday weekend.  On Monday of this week, I called to ask my results and wasn't called back by the endo's office.  I finally asked my family doctor to look into the blood test results for me and her nurse was the one who told me it was high.  But I don't have any other numbers.

Should I insist that they mail me the entire lab report?  Also, in the future, should the script have anything else checked off besides just "T4 Total" and "TSH"?

I had normal thyroid numbers even last June of 2007, and started to have thyroid issues this past fall, had an allergic reaction to tapazole in February, and am trying to understand the changes from being hot and sweaty all the time to being freezing, having headaches, ear aches, drooping eyes, and no energy.  

I don't want to feel sorry for myself, because I know that everyone has problems, so I try to stay positive.  This forum has been so helpful, and I am trying to read and understand as much as I can, but the endo's office hasn't been very helpful AT ALL.  

Thank you.

[laurfe20]

Thanks for your help.  I still feel lousy, but with the support of this community, I feel as if I'm not going crazy.  I'll call or go see my family dr. tomorrow.  I'm going to try to get some sleep.

[AR-10]

T4 total is a Total T4 test.

It's an old test that does not give you very acurate information. It measures the total T4 in your blood. A Free T4 test measures the available T4 in your blood.

Most of the T4 in your blood is bound by a protein and made unavailable. Measuring all of it does not give you an acurate picture of how much usable hormone is in your blood. Only the "free" hormone is available to use.

[AR-10]

I would just let the family doctor monitor you and tell the Endo goodby.

It takes the med you are on six weeks to come up to full effect in your body. Have your doctor run a TSH, and a Free T4 every six weeks until your TSH is around 1.5 or so, and adjust your med dose if needed. Then get a TSH and a Free T4 every three months, forever.

A Free T3 test along with the others every once in a while is a good idea. Once or twice a year, or if you feel the symptoms are hanging on or coming back.

Sorry you've had such a run of bad times.

[laurfe20]

I see that on my script he has checked T4 Total and TSH.  What does T4 total mean?

[laurfe20]

Thanks for your show of support, too.  I don't know how long to wait for results.  I am getting worse.  I went to my family dr. last Tuesday, the first of July, but that was before I went to have my blood tested.  She faxed a script to a weight management center on my behalf and they called me today.  Now that I know I am hypo, is it worth it?  I had been exercising by walking a lot, but now have very little energy.  She asked if I want a sleep study, and I said no.  I can't bear that.  My husbnd already sleeps with a mask, and I don't want that.  I don't snore.  I don't have sleep apnea.  I just want to be monitored more closely.  I shouldn't have had to have mY husband be the one to tell me to have my blood tested.  My family dr. is not at fault.  I might call her office back to see if I can either see her again, or talk to her on the phone instead.

What questions should I ask my family doc?  She is agreeable to any reasonable test.  She is cooperative, but obviously thought I was still euthyroid, as did i.

[laurfe20]

Yes, I agree with you.  This is my second endo.  Can you believe it?  

The first one was nasty.  When I had a violent reaction to tapazole back in February, he yelled at me.  I called to try to get a new endo, and one wasn't taking new patients, the one I switched to's first appointment was on May 2nd.  When I went to him, I still had Grave's, even two and a half months AFTER my RAI.  Then he gave me a reusable lab slip. He said he didn't need to see me until OCTOER!!!  and I switched to him!! :(

I asked what I should do if I changed to hypo, and the nurse said it could be handled over the phone.   Sounded hokey to me.

In the mean time, my sister passed away, I went on a medical leave from my job for three months, and was told to have my blood tested in June and August only.  The only two things checked off on the script are what I reported in my post above.

On June 9th, had blood tested and was told I was euthyroid, which I guess means normal.

Then on June 23rd or so, I left a message that I was feeling horrible. Instead of hot flashes, I was exhausted, shivering, and had migraines, bad back, and felt very strange.  They NEVER called me back.  This is my second endo.

I called again on July 2nd.  Again, no response.  I know I waited a long time, but I thought it was all in my head.  

Then my husband insisistged I go to the lab and have blood tested, even though they told me to wait until August.  I felt like I was dying, no kidding...or going insane.

Then they didn't even call with the results!  Called on Monday, July 7th, one day after my birthday (I felt like **** on Sunday, my birthday), and I couldn't even get the receptionist to make an appointment.  

Finally, my family dr. got the results, and her nurse said my numbers were "through the roof" and that SHE would call my endo for me.

She obviously did, and by the end of the afternoon on MOnday of this week, they called in a high dose of Levoxyl (112 mcg), and I took it then.

I didn't sleep at all Monday night.  I took it again Tuesday, Wed, and then this a.m.  I feel awful...Woke up with closed eyes, pain in my ears, headache, back ache.  I want to cry, and look like I am crying even when I'm not.

The nurse at the endo finally called me last night, and she told me to calm down.  She said she didn't get my messages.  I don't believe it.  Or the office is disorganized, or over-busy.  there aren't many endos in my town.  

The nurse thought i had cancer, then she thought I had the thyroid removed.  She finally said, oh--you had Grave's.  She hadn't even read my chart.  I have only been to this dr. once.  The first endo was rude when he yelled at me because I have a violent reactin to tapazole--pseudogout, internal bleeding vaginally and rectally, low grade fever, rash on my shins and legs, itchiness all over, and then I was put on such a high dose of prednison that I had feelings of a heart attack.

A month later, my sister, Linda, died.  She had had a stroke.  Four months before that, last fall, my step-father died, and at the end of May my mother was in the hospital for 2 weeks so I had to fly to FL to take care of her.  

AFter that, believe it or not, when I came home from FL, my blood test was normal June 9th.  Shortly after that I felt very sick and started to call the new endo's office and got ignored.

I am depressed now, but have a friend who insists that i leave the house anyway.  Weight gain is a common theme on this thread.  Well, I am gaining like there's no tomorrow.  What should I do???

[blksapphire]

I agree with AR

When my TSH shot up to 37.49, my endo immediately called in a prescip for synthroid 100mcg.

I felt lousy too, but I feel a lot better now that my TSH is 2.46.... I still get some of the hypo symptoms. But I still feel a heck of a lot better now than then.

My endo   checks my bloodwork every three months and advises me to call if something doesn''t feel right.

Try your primary and see if he/she will listen to you.   He may be able to contact your endo dr and advise him/her of the situation.

Keep calling until you can get another doctor.  Sometimes you have to aggravate them.  They think those letters in front and behind there name know us better than we know ourselves.  I'm not taking anything from them, we just have to make them listen.

Feel better

[AR-10]

Until your TSH gets down below 3.0 or so there isn't much sense in getting a Free T3 test run. A Free T4 and a TSH is plenty.

A Total T4, on the other hand, is not a good test. You need a Free T4 test, especially as your TSH gets closer to 1.0 or so.

Yes, you should ask for a copy of every test they run.

You Endo was very sloppy to let your TSH and thyroid hormones get so far out of whack before putting you on replacement hormones. That is totally uncalled for. You should have started meds as soon as your TSH rose above 3.0, in my opinion.

You may get better care from your family doctor at this point.

So are you on meds now? If not, you should get them to call in a scrip tomorrow, and then find a different doctor. Soon.