Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Ok gang the more I think about my appointment yesterday at OHSU which is the best hospital in the state, ahmmm, the angrier I get. Here are the results using their ranges which is a bit different from the local lab:
TSH .05 range .34 to 5.6
FreeT4 Serum - .9 range .6-1.2
This shows me dead center on the FT4 on 1.88 mg of MMI. He wants to increase the medicine to bring the TSH up and hopefully it will register in June and then he wants to take me off the medicine. He is looking at results from Dec which had TSH at 1.86 and Ft4 at .7 the range for that
set was ..71 to 1.76. He said he would have taken me off the MMI at that point. Now, that is scary if you ask me.
Am I missing something here - wouldn't logic tell you to lower the meds and have the TSH reading hold before you discontinue meds rather then raise the dose??? He told me he treats 100's of Graves patients and they get 2 shots at the medicine and usually have the second round - gee I wonder why???? I did email him Jbrooks link on the TSh - wonder if he'll read it.....
Hey, if you guys see something I don't I appreciate the input - perhaps I'm not as open minded as I need to be???
Happy Easter!!!
Cindee
TSH .05 range .34 to 5.6
FreeT4 Serum - .9 range .6-1.2
This shows me dead center on the FT4 on 1.88 mg of MMI. He wants to increase the medicine to bring the TSH up and hopefully it will register in June and then he wants to take me off the medicine. He is looking at results from Dec which had TSH at 1.86 and Ft4 at .7 the range for that
set was ..71 to 1.76. He said he would have taken me off the MMI at that point. Now, that is scary if you ask me.
Am I missing something here - wouldn't logic tell you to lower the meds and have the TSH reading hold before you discontinue meds rather then raise the dose??? He told me he treats 100's of Graves patients and they get 2 shots at the medicine and usually have the second round - gee I wonder why???? I did email him Jbrooks link on the TSh - wonder if he'll read it.....
Hey, if you guys see something I don't I appreciate the input - perhaps I'm not as open minded as I need to be???
Happy Easter!!!
Cindee
Your latest-greatest endo is making the same mistake my 3 former endos made - looking at TSH and declaring the patient hyper.
You FreeT4 level is actually a bit on the low side - based upon your lab's ranges, most healthy people would have a level around 1.05.
The meds would get lowered so your FreeT4 level increases - it doesn't matter what happens to your TSH level.
TSH is like the gas gauge on a car - it might tell you how much gas is in the tank if the gauge isn't affected by anything (like a broken line).
TSH is affected by our Graves' antibodies. So, just as you can confirm without a doubt how much gas is in your tank by actually measuring the gas in the tank, you can find out how much thyroid hormone is in your body and fueling it by looking at your actual thyroid hormone levels.
Just because the endo works at the best hospital in the state doesn't mean he's the best endo. Remember - half of all doctors graduated in the lower half of the class.
You need a doctor like my current one who says "We know to ignore TSH in Graves' Disease".
No wonder you're angry after the appointment.......if you're not already feeling frustrated, I suspect that will follow.
Sorry to hear about yet another clueless doctor.
((hugs)) and Happy Easter!
While I hope this doesn't happen to you, I will not deny that your story sounds similar to mine.
After 3 clueless endos and a now-former clueless GP, I wound up going into remission before finding a thyroid-savvy doctor.
Believe it or not after emailing back and forth with him and stating my case and sending "links" to support what I've learned here - he responded that because I am on such a low dose there was no time frame.....Ya think??? Oh well, bought a bit more time as I continue my search. I don't want to be the one telling the Dr what to do - just being and informed partner so we can work together. Oh yeah, he did tell me at one point that we couldn't dose based on how I was feeling. You can about imagine my response - yes we can as long as the labs support it and that's exactly what we will be doing.....:))) Off to see the wizard is what comes to mind - I'd sure like to get off the yellow brick road....Anybody know anyone worth their salt in the Pacific Northwest????
Hope you all had a great Easter!
Cindee
For whatever it's worth, shortly after starting replacement meds with my doctor, I've led every dose adjustment.
My doctor has said some scary things at times to me (like "balancing TSH and FT4" and not liking the idea of me splitting pills yet, Rx'g me dose sizes so "we can play with the doses").
However, she works with me and I'm feeling awesome.
If you can get that far with your current doctor, that could very well be the best you'll get but, at least you'll get where you need to be.
Of course, keeping an eye out for Dr. Getsit doesn't hurt ;)
Take care,
Cindee
Unfortunately, it seems like the reality of life with thyroid disease means pushing for the proper care.
Now, some people do find Dr. Really Great but, it often requires kissing many toads.
Heck, I kissed 4 toads before finding my prince(ss) and you already know what I'm dealing with. lol