Do you have any recent Free T3 and Free T4 tests to share beside the ones from 18 months ago?

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I posted them under Starting Testing on 6/7, Hope that helps.

Okay I checked your thread from 6/7/11 and I don't see a recent Free T3. Your doctor needs to order this to know how much beta blocker to even give you if you were to ask for it. The FT3 works with the beta blocker.

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Sorry that was under the post Few More Results on 6/9 . Free T3 is 7.8 with range 1.8-4.2. Dr tried a beta blocker 25 mg of Altenol - know that's not spelled correctly. I couldn't function with it - all I wanted to do was sleep and it increased the heart palpitations. Tried splitting the dose and still the same result. I talked to her nurse earlier today and Dr said to just hang in there and keep taking the Tapazole and it should be getting better in the next day or so. I am to call back in tomorrow afternoon and let her know how I feel. I didn't have the elevated heartrate until after I took the Tapazole. Its not any worse - hanging about the same so maybe that's a good sign. Sure would like to sleep.....:))

Okay, I'm sorry, I try my best to keep up with everybody here, but lately I've been feeling slightly hypO so I'm in the La La land. My recent blood test will tell me if it is time to reduce the MMI I take. I'm only on 1.25 mg per day...! :-)

Anyway, the Atenolol in the 25 mg pill size, I used to split mine up and take these as low as 3.125 mg per day. I couldn't handle them at 25 mg either.

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Thanks so much for the info. I almost wish I was on the beta-blocker but will ride this out for now I guess. Not looking forward to this part of the journey but guess its necessary. How long have you been on meds? My biggest fear is going HyPo and being there for a while before anything gets done. Guess that's another topic with the doctor when i go back in 6 wks.

Hi Cindee,

You are more hyper now due to the natural progression of the disease and the time they forced you to wait to be treated. In addition the high iodine content of the uptake scan makes many more hyper.

Tapazole does not make you more hyper. It works by preventing new excess thyroid hormone from being produced. The excess hormone you already have can only be eliminated by time. The body has to use it up.

So you have started on a total of 20 mg per day?
What is you most recent FT4 result and the reference range for that. What date was it taken ?

Did they ever run proper TSI or TSH antibody labs to confirm Graves' ?

There are high error rates with using on the uptake scan, and for that reason it is no longer commonly used, since we do have antibody testing available. What was the result of the uptake scan ? Those that test in the upper 80 % and 90% are more likely to have Graves' if that's any help.

Since you have had this high dose of iodine, and are more hyper now.... I think it would be a very good idea to eliminate as much iodine from your diet as you can do for right now, in hopes of preventing more Graves' problems. High iodine increase our antibodies and thus the risk of TED.

A good start would be tossing any iodized salt in the house, avoiding seaweed and ocean fish. The next highest iodine problem I ran into was those yummy little flavored yogurts. They don't culture the yogurt because that takes time and increase cost. so they use a seaweed extract to thicken it.

Dairy sometimes has higher iodine too, so I used dairy as an accent, rather than a base of a meal. Instead of grabbing a big slice of cheese to hold off my hunger, I grated a little bit on top of my food. Stuff like that.

I eventually learned to offset my need for cheese ;) by adding larger amounts of goitrogens ( foods that block iodine absorption) to my normal everyday diet.

opps.. I forgot to add the rest of the paragraph on salt !

Natural sea salt, the unprocessed colored types are best. They have only a teeny tiny bit of iodine, but they do include so many of the micro nutrients we are missing.

We all need some iodine, but the standard American diet is more than triple what anyone needs. More folks don't have the risk of thyroid disease, so all that extra iodine doesn't affect them.

You want to replace your daily multi vitamin too. That probably has 150 mcg of iodine.. the full daily requirement, before any iodine in food. There are lots of multis without iodine.. you will probably need a pair of magnifying glasses to read the labels though. ;)

Thanks so much for the info - i didn't think about the test making things worse. Because of the test I have pretty much eliminated the iodine and will look for what you suggested to take to block it. My
TSH was less than .004 the same as it was 18 mos ago and I don't have the ranges available at the moment. The FT4 was 2.7 and again I don't have the ranges but I do know it was well above normal.

I have antibodies in my blood that interferred with the antibody test for
Hashimoto's and the TSI was at 185 which said it was high.

What concerns me is you mentioned the uptake test of 80-90 for Graves. My day 1 at 4hrs was 35 (if I remember right) but the next
day 2 was only at 53% but the report by the radiologist said it was
consistent with Graves. Now I think I'm confused......

Things are simmering down abit but the heart rate is still in the 80's which I realize isn't high for most but my normal is in the low 70's to
mid 60's. I exercise a lot so I know where it usually is and is when I
exercise as I use a heartrate monitor for cardio.

Thanks so much for the help and if there is any insight on the
Uptake test with my %, would appreciate it.

Now my "oops" - yes I am taking 20 mg a day of the Tapazole and am splitting it into 2 doses 12 hrs apart. I am very sensitive to medicines
as I told Dr so that's why I asked if the meds could be creating some of this. I never felt bad to begin with so am not use to all this stuff.
Guess I never knew what "normal" was....:)

You have TSI results and they still did an uptake.. pure profit.

Sadly so many doctors just don't understand Graves'. They should know what the high dose of iodine does to us. Yes, they send Hashimoto's patients for uptakes and never get patients complaining about hyper symptoms or the eye disease occurring or increasing because of the test, and yes, they have very few Graves' patients..and yes, before we had TSI and Trab available, this was standard of care. There are plenty of studies showing these problems.. I know they are over worked..but I still see no good excuse.

I'm on your side, and sometimes when I see new patients reporting this expected hyper increase.. doesn't happen to everybody, but often enough it's common knowledge among those of us that try to play it forward and help out on lists and message boards.... well sometimes it just gets to me. If I a mere patient can clearly understand, I expect a doctor treating to figure it out.

Your lower uptake probably is a result of the iodine content of the foods you ate the month prior. I remember a study done in Boston some time back. They had groups of people eat different brands of bread.. then did uptakes on all of them. Huge variations were the result. I remember wishing the brands were familiar to me, but they are all different on the west coast.

I also remember a young man that had a near zero uptake so his condition was diagnosed as not Graves'. Come to find out he had been contaminated with iodine, unknown to him.. but when he finally managed a TSI test, it was extremely elevated.. thus figuring out the WHY of the whole thing.

I seen the misdiagnosis of Graves' estimated at a full 20 %.. .that was before we had our antibody tests commonly available.. I have always guessed that number came from the uptake problems.

So.. your 185 is a nice place to start. You have managed to catch this fairly early. Well done.

The FT4.. if that was 18 months ago.. it means not much now.

But if it is from this last few weeks...most FT4 reference ranges top out at about 1.80.. so if that's the one to compare your 2.7 to.. its only mildly elevated.. so you would want to be sure to get labs when your symptoms change. Better to catch things when you first come within the reference range, and not after you have started slipping too low within the range.

We do not need a doctors appointment to get labs done. Call the office and request labs be done now..because.. what ever that turns out to be.

20 mg should be okay as long as you don't just wait too long to check. It is a bit high if the current FT4 is only 2.7. It's really a matter on staying on top of it, and not just accepting your too sick to do anything about it.. which I see people do. They would be safer on 10 mg.. but I'm pretty sure I'm right that YOU will be fine. :)

Thank you for the input. I do think I caught it early. The signs have been there for a long time with a low TSH but FT4 and FT3 still "normal" nobody looked any further. My GP kept going after Hashi's until I asked "did you check for Graves?" then had to tell him about the TSI thanks to this board I wouldn't have had a clue.

How do you get labs done without Dr's orders? I go back on Aug 4 and just started meds on 6/28. Will have lab done on the lst of Aug unless I feel way different.

Crazy part is I have never felt bad until all the testing - always have
had anxiety and lots of energy - never knew anything different. and I haven't slept for years so that may be novel... HA What is a sign that we've adjusted too far? I am a real light weight with medicine so wonder if this is too heavy of a dose for me. Guess time will tell. I would hope the dr will be willing to work with me - if not will
look for another one......

Getting labs early if need be:
The doctor still needs to requisition them. But you don't need to have a doctors appointment to do no, nor to receive the results. Getting a system set up may take a few tries, but you will learn how each office will work with you after a couple attempts.

I would call and find the right person to do the ...asking the doctor to write a lab slip. ... then call the lab for an appointment for the blood draw.
The doctor needs to write on the bottom of each lab slip ( or check the box) "mail copy to patient".

I would write my specific symptoms don on the day I went for a blood draw. When I got my results I attached that note to my copy. Over time I learned to be more specific in my notes, and learned where within the reference range I feel best.

That file was the key for me. And proved invaluable later when the day came after I was off meds and slipped a bit too low and needed replacement hormone for awhile. I was able to lay out in chronological order almost 4 years of notes and lab results.. right there on the exam table to prove my point ! HA ! The poor doctor didn't have a leg to stand on trying to tell me I was normal. :)

Not that anticipating slipping too low is my message. My point is now that you know your one of us, people with the genes to have thyroid flare ups during our lifetime, we are best armed with knowing our own particular set point, and in time, things in life that try to push us over the edge. Those things may be foods, supplements, a job, a person, chemicals.. things we figure out as we go along.

I can now look back over my life and with my family photo album to verify, I see that this has been going on most of my life. But somehow it kept getting missed. I , like many others have a long list of reasons I thought caused those times when I was off.. a list of things the doctors said was wrong, but they were really caused by either being a bit too high or a bit too low. I also remember several things I did that calmed my symptoms over the years.

Interestingly those same things turn up on the "how to help treat Graves' along with medication" . I had one good dermatologist that put me on a low iodine diet.. always cleared up my skin, and I remember feeling so much better. Healthier somehow. But over the 30 years between that first low iodine diet and hyper Graves' I went on and off that... after all it was just my complexion right ?

Same thing for several herbs and supplements..and the same recommended diet for ADHD happens to apply to hyperthyroid. Who knew ?

Sensitive to meds.. yes, you will see this written over and over again by Graves' people. It's not just you. When thyroid levels are a bit too high or a bit too low, the body metabolizes everything differently...including any medications. So we do feel these types of things.. but pass it off as being med sensitive.. but not understanding why .

How to know when your starting to slip too low. It will be different for each person. Mild hypo feels very much like mild hyper just to make things more interesting. What most often happens is patients report starting to feel much better.. then they say they must have been mistaken because they are still suffering hyper. They strongly believe their dose is not high enough..but tests show they slid right past normal.. !!!

Thing is our meds can only prevent new hormone from being produced. The excess you have now will take time to be used up. These meds are unlike anything I had ever experienced. It's that time lag that I had to learn to expect. That and the thought process that more medication does not always equal feeling better.

cindeeh:

Pam has given lotsa great info...!

Now my thoughts on the Uptake...the real reason to do the Uptake is for the doctors to know how much RAI to give to a person down the road. It's not necessary to even do this test now that we have the TSI antibodies test.

{{{hugs}}} :-)