Graves' Disease Support Group

Hey trying...could you post your latest blood test results? I think you may have the FT4 and FT3 reversed. I just cant remember your results. Big Hugs...Kathy

Surgeons ENDO Labs

6/30/09
Ft4 (direct) 1.82 (0.61-1.76)
Tsh 0.007 (0.450-4.500)

8/19/2009
FT4 Free (Direct) 1.71 (0.61-1.76)
Triiodothyronine (T3) 1.75 (85-205)
TSH 0.005 (0.450-4.500

10/8/09
FT4 1.56 (0.61-1.76)
T3 132 (85-205)
TSH 0.007 (0.450-4.500

Regular Endos Labs

6/19/09
tsh 0.005 (0.270-4.200)
ft3 5.5 (2.6-4.4)
ft4 2.0 (0.9-1.7)

7/27/09
tsh 0.005
ft3 5.8
ft4 1.9

9/10/09
tsh 0.005
ft3 4.5
ft4 2.0

Reg Endos Labs for last year when i started to feel Sick & loss my hair

9/4/08
tsh 1.320
ft3 2.4
ft4 0.9

10/25/08
tsh 1.440
ft3 2.6
ft4 1.0

i go for new labs on friday hopefully i can see what to do nxt b4 i become a miserable mess again

2/12/09
TBII 26.0 H (16.0% inhibition)

yes your FT3 when you weren't feeling well was below range or close to below like 2.4,2.6, you need the FREE T 3 again, not total.132 is low too for total so you need to see if the free level is lower. They won't give you Cytomel, that'll make your tsh lower,so don't hold your breath on that one but maybe B&R. It'll give you the replacement you need so the frees won't get too low and still keep you from getting hyper with the Meth. It like puts your gland to sleep and the replacement takes over to give you the hormone it needs.

SO i jst called the surgeons endo up to see if she will block replace b/c I kno my reg endo is against it ..well she wont do it either. But the nurse did say that my total t3 was droppin i explained to her my years of m my misery and she said she is goin to talk to the dr i should go in for labs with them ( altho i am goin friday w/ labs from my reg endo friday) & we can discuss what we can do to make sure my levels dont tank (well that sounds promising lets see if they mean it)

Jules

I thought I read on here somewhere that selenium could help bring up the FT3. Not familiar with it but Brans has mentioned it as well as others - why not start a thread if it doesn't come up here?

Now, if your FT3 winds up being low, my simple mind tells me Cytomel just might help. Not to sound whatever, but I have what I call a math & science head. I studied biochemistry in college and this make sense to me.

I am of the mindset it doesn't hurt to ask on a "let's just see" basis.
You have already demonstrated to your doctors that you want to be proactive in your care, have found levels at which you feel well. You get labs regularly so the results of any 'experiments" will soon be evident. You could start at a conservative dose and see what happens.

You are in-range with your FT3 and have "room to move" (that's been my latest-greatest comment :)

You get your labs often enough and you have good reasons for wanting to feel well and keep feeling well.

I'm going to be posting a thread in a little bit (just heard back from new Grave's doc (#4) .....we both have a case and we can win!!!!

Keep on doing what you're doing - YAY!!!!

All the best,

Carol
All

OMG im gonna loose it I HATE ENDOS ..Alls im sayin is i dont wana wait till im in tears to do something.Id like to start fixing it now while my head is straight and i can think quickly not when im sooo friggen desperate to do anything to feel better the RED FLAGS are up what the hell is wrong w/ these doctors. I swear they hate the fact that i research and come in w/ notes it really PO's them ..You get the are you questioning me look. The other fact is mention a support group hahahha Ive been laughed at straight to my face by a endo when metioning this group (which is bad bedside manners)

Trying2smile,
I so totlay understand what you are going through.
Ok lets take a nice deep breath and try to relax.
I think it is time for you to search for a new doctor. When you call the differnet offices you will need to ask them spasiffic questions. If they can't answer them ask them if you can talk to the nurse.
I see you want to do B&R ask them if the doctor has done it and if they are willing to do it. Also ask them if they have has sucess doing it. The very first question should be if the doctor has successful treated GD pataints though. There is alway sa swy to get around bad doctors, it is called you fire them. THey work for you and you are paying them for a servece, so you can fire them for a bad job jsut like you would do any one that you payed to do work for you.
We are here to help you. If you need a place to start just let me know and I can send you a web link to a doctor finders site and a rate your doctor site. I use these to campare notes to find a doctor.
Another thing you can do is call your phamacy and ask them if they have patiants that take both ATD's and thyroid replacement and if they can suggest a doctor that has done this for other pataints.

Hugs
I hope things get better for you very soon

Angel

THANKS :)
Its so funny b/c the endo said if I decide to have a TT that i would be the person he would prescrib a T3 T4 replacment for ..Why not jst do that for me now!
OMG Ive been to every site to find docs ..Alot of these docs have come recommended off thyroid boards & websites & they still suck! But any info u can pass on to me id be willing to look through and call up. The endos I see know from the very 1st app w/ me what the deal is I dont put up fronts NO RAI TALK & if u cant dose me prperly pls point me in the direction of someone who can! They all sound great that first visit promising but when u start to complain its a differnet story ...I once said to one endo You cant always have a healthy patient all the time & if u dont like me complaining when i dont feel well than u need to find a new job its ur job to fix whats wrong mine to come in and tell u how i feel

Jules

I know exactly where you're at.....Endo #1 actually YELLED at me when I told him I didn't want to go 8 more weeks on a dose that already had me hyPO - I moved onto endo #2.

Endo #2 would nod in agreement when I'd bring up research info but always found a way to dispute it......she always said she would work with me but dummy me didn't realize her dosing decisions didn't reflect that.

I took her going out-of-network as a message from the larger universe to move on (plus, I started hearing the RAI talk again 'cuz I just passed my "limit" of 2 years on ATD's)

Endo #3 lasted for as long as her calling me with my labs after my first appointment with her - we had quite a respectful exchange of information and concepts during the appointment and I was hopeful.

I did have a few areas of concern due to some of her comments about TSH and her criticism of 1.25mg MMI/day - she actually thought I should have just taken 1 5mg tablet/week - she did not accept the "even dosing" concept.

Funny, I casually mentioned that I was motivated to research the disease since I was a science head and majored in biochemistry in college. That seemed to gain me some credibiity with her 'cuz she responded "Wow - biochemistry? Those of us who couldn't cut it in biochemistry become doctors" ROFLMA

I sooned learned why I seem to be better at managing my disease than some endos.

Anyhoo, when endo #3 called with my labs, my FT4 was 1.0 (range .82-1.77) so that definitely corresponded with my significant hYPO symptoms and confirmed I did the right thing with stopping meds.

My TSH was .114 - she told me I was clinically hyPERthyroid, my body was forgetting how to make TSH and she actually wanted me to start taking 5mg (yes FIVE mg) MMI. YIKES!!!! Talk about DEAD WRONG diagnosis, conclusions AND dosing!!!

I told her that would drive my levels down lower and I didn't want to do that. Since I had "room" to move with my FT4, I told her I felt 'safe" being off meds and we compromised with me staying off meds until my next set of labs.

She wanted to wait 12-14 wks. (!!!!!!)......no freakin' way - I knew that, when off meds, the patient needs to have labs every 4 wks. Since I already had a mid-December appointment scheduled with her, I asked her to let me lab just before then and she agreed.

I knew I had to find a doctor before that 'cuz I wanted to get labs done after 4 wks.

I met with an internist on Monday ( she has been treating my 11-yr-post RAI nail tech for the past 7 years). She seemed to understand EVERYTHING Graves', ran blood work and called me with the results today.

The first result she gave me was TSH .095 and she told me it was hyperthyroid - the red flag went up and I went into my usual "It's my understanding that, with Graves', the TSI stimulates the thyroid and the pituitary then doesn't produce TSH so we're not really supposed to look at TSH in Graves'"

She said "That is correct" (!!!!) "We know not to look at TSH" (!!!!!)
Holy smokes - there IS a doc out there that gets this!!!!!

She then told me my FT4 1.27 (range .082-1.77) - I told her I was still having some hyPO symptoms - really bad chills and even worse at night (fleece/flannel PJ's w/4 blankets, one electric) as well as constipation, occasional brain fog and energy a bit lacking.

I told her I just want to feel well and think I need FT4 a little higher.
She agreed!!!!!!

My TPOab (marker of thyroid inflammation) had dropped to less than 5 which is a good sign....the other antibody results aren't back yet.

I asked her how we should move forward.....she wants me to lab in 4 wks (yet another checkmark on my "list") - told me don't go longer than 5. She agreed that I should stay off meds and, if
my FT4 got higher than 1.7, she'd want me to start a very low dose of MMI (this is exactly what Elaine Moore recommended for me)
The new doc thought probably 1.25 mg every other day to start.

So, after my usual long story, I think you can see I've been in the same boat as you.

Only thing, I finally decided to heed the advice of many forum peeps and tried an internist......that just might be your answer.
(or a GP, DO or holistic doc, according to forum peeps)

Some forum peeps suggested sharing a "Thyroid for Dummies" book as well as Elaine's book with a reluctant doc or one that needs a little clarification.

Bottom line, you know what you need to do to feel well - stand up to those endos and demand the care you deserve. You get regular labs, have proved yourself to be diligent with your care - you are entitled to "experiment" a little to maximize your health.

Definitely, don't let them make you go hyPO again - it's so hard to think straight when hyPO (hmmmm....maybe that's their reason :)

Worst case, "use" a few docs to get labs, we'll help you with dosing decisions along the way.

You've worked too hard and come so far to have ANY steps back!!!

Hugs atcha fellow Joisy girl!!!