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...
Hello everyone, hope all is well with my fellow graves survivors.
I have a question, does Methimazole come in a 1.25 dosage or is it 2.50 cut in half?
I currently have symptoms for really the last 3 months. My endo is not open minded at all, so I'm on a quest to have my ducks in a row before I going head to head with her.
I don't get it that these docs will not open their minds to possiblities of maintenance for this disease. Say you have a stressful event. Why , wouldn't they be open to dosing for a month or two and see if that makes
the patient life for the better. I see how you could become an advocate for this disease just on dealing with a physician.
My endo only goes by the tsh being in the normal zone. She does not acknowlege my graves and symptoms. She denies any other part of the body that has symptoms flat out. I will be searching for a new endo, there really isn't a lot to choice from locally. What other kind of doctor would help me with my graves, any suggestions? Almost all of the blogs I'm reading, the patients are on some type of maintenance medications.
I believe no patient should ever walk out of a physicians office feeling worse then when they walked in..its unacceptable.. Thanks for your help and listening! Stay strong.
Janelle
I have a question, does Methimazole come in a 1.25 dosage or is it 2.50 cut in half?
I currently have symptoms for really the last 3 months. My endo is not open minded at all, so I'm on a quest to have my ducks in a row before I going head to head with her.
I don't get it that these docs will not open their minds to possiblities of maintenance for this disease. Say you have a stressful event. Why , wouldn't they be open to dosing for a month or two and see if that makes
the patient life for the better. I see how you could become an advocate for this disease just on dealing with a physician.
My endo only goes by the tsh being in the normal zone. She does not acknowlege my graves and symptoms. She denies any other part of the body that has symptoms flat out. I will be searching for a new endo, there really isn't a lot to choice from locally. What other kind of doctor would help me with my graves, any suggestions? Almost all of the blogs I'm reading, the patients are on some type of maintenance medications.
I believe no patient should ever walk out of a physicians office feeling worse then when they walked in..its unacceptable.. Thanks for your help and listening! Stay strong.
Janelle
Janelle15
I totally sympathize for you. Plus stress is a trigger.
That's exactly what my Dr said about the Free T4 & Free T3.
Go back and just look at any of your Lab work and see what your Free's have been doing. Now if the are coming up more into your ranges and not going more down, then that is a good sign. But if the Free's are going lower in your range, then that is normally when a dr will add replacement.....but that is a ruff ride too...so hopefully your Free's have been moving up more and not down, then they will correct themselves on their own. But it does take awhile to feel normal. I have read on Elaine Moore's site that it can take up to 6 months.
But that is why beta blockers are so helpful. Normally the Dr's will prescribed beta blockers in the beginning too.
But even as they moved into the correct range we feel horrible, that's why beta blockers help.
Found out mine is not Graves, I don't have positive antibodies. But Hyper and now HypO, cause Dr only was looking at the T.S.H. and medicated me into HypO/ hell. But my levels since stopping the Methimazole are slowly increasing, so hope they keep getting more now into the mid to upper range. So mine might correct it self on it's own, wish I hope....but not even close to feeling even 85% of my normal self yet, but way better then when my levels went into HypO/hell.
Here is a link, it helps for the symptoms, it will first show Hyper, then it shows HypO. link: http://www.livingwithgravesdisease.com/symptoms
Oh, yeah, this site is tricky...some times you can write a whole post them push submit / add and it's " puff " gone before it even post. Plus labs with symbols, you can write it in the post, but then when it is submitted / add the symbols are gone.
But for sure those last labs of yours :
tsh 1.30 (0.36-3.74)
t3 2.50 (1.8-4.2)
t4 0.99 (0.60-1.50)
-----------------------
The Free T3 and the Free T4 are to low, now check any past labs that you have and see if the Free T3 and Free T4, have moved up since past labs....If these numbers are better on the Free's then that is a good sign. But they should still check the levels, plus see if you can't post your first test results to confirm Graves on Elaine's site, to make sure the Dr diagnosed it correct.
Link: http://www.elaine-moore.com/Forums/ActiveForums/tabid/323/Default.aspx
Many Dr 's think a low T.S.H. means Graves.
TSH 1.44 0.34-4.82
Free T3 2.60 1.8-4.2
Free T4 0.98 0.60-1.50
compared to 3/19/15
TSH 1.30 0.36-3.74
Free T3 2.50 1.8-4.2
Free T4 0.99 0.60-1.50
I'll just be honest and say I really don't know how to read my numbers, I guess that is something I need to work on.
Again, you have helped me so much and I appreciate it greatly. Have a fabulous day! my best, Janelle15
Janelle15
Thanks, I think some parts of me are returning if I can make someone chuckle....I have even returned to laughing, something that left when I was in HypO/hell, now just HypO land.
But did you post to Elaine your lab blood work when they first diagnosed you with Graves? The antibodies blood test! That is one I still don't understand, but another site told me mine were negative.
Your labs have moved down in the numbers, that is a concern.
10/10/14
TSH 1.44 0.34-4.82
Free T3 2.60 1.8-4.2
Free T4 0.98 0.60-1.50
compared to 3/19/15
TSH 1.30 0.36-3.74
Free T3 2.50 1.8-4.2
Free T4 0.99 0.60-1.50
So you are not taking Methimazole, your numbers for the Free's should be moving up. How long ago did you stop taking the Methimazole?
Normally if a person has been off of the Methimazole, the numbers will move up. No wonder you are feeling worse.
So have you completely stopped the Methimazole? And how long ago?
The reason I say that is a concern is from what I have read 20% of graves patients, but I think it is when they are in remission can ended up HypO.
mmztcass is a post person on here and is the expert for graves, she is not on replacement or add back. I haven't seen her posting lately. Are see if this site can e-mail her, so she can help.
Did you take any Methimazole around your last labs?
Sorry, Your FreeT3 has moved down in range. Your FreeT4 has moved just a tiny bit up. SO DISREGUARD part of my POST#22 and part of Post# 23.
That is good, the FreeT4 is important, so it has at least went from 0.98 months ago to 0.99 on 3/19/2015. It still needs to get more in the mid to higher range. Your range is 0.60-1.50...so this is GOOD, it is at least moving more up in the range. But this is way you are feeling so horrible, it is still too low.
I would second that your levels might be a little low for you. Some doctors have a hard time accepting that "normal" might not be "optimal". My endo has acknowledged that I seem to be sensitive to even slight changes in my hormones, and that I feel better on the "warmer" side of the range. But I still have to remind her of this from time to time. Apparently doctors think low normal is safer than even midrange, let alone high normal.(Low normal is a horrible place for me to be.) So now my levels are almost up to midrange, and I feel OK, but not great. But I have increased hot flashes, palpitations, insomnia--pretty typical perimenopause symptoms. I thought if the levels are normal, than most likely it's perimenopause causing these symptoms. My endo agreed. Of course this makes me a smidge nervous, because I initially ignored the Graves symptoms, thinking they were menopause symptoms and normal. (Thank goodness, sort of, there was something treatable there and it really wasn't normal, because otherwise, getting older was going to be a really, really long haul!
I also can tell you that I feel yucky before/during a change in levels. (I still take MMI.) But there is nothing that tells me if I am moving up or down except labs. There are too many symptoms that can go either way. Hope it helps to hear others experiences. :)
Please leave out the symbols and parentheses and such when posting your labs.
You would want to get your Free Ts up to the mid to the upper third ranges to feel your best there and to keep the thyroid antibodies (TSI and TRAb) down as low as possible. This means finding the lowest possible dose with the MMI to take to allow your Free Ts to come up a bit.
{{{hugs}}}
And yes, Elaine Moore's website is great to use as well.
{{{hugs again}}}