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...
If still hypO at the next set of labs, then going down to 1.25 mg per day taken twice a day of 0.625 mg each would likely work until the Free Ts come back up to the desired points within the ranges that you would feel your best there at.
{{{hugs}}}
If it were me I would take more than one day off of the MMI, like you say. I would let my symptoms be my guide, and when I came to a level I thought I could tolerate, I would resume the pills, but allowing at least 4 weeks of being consistently on the new dose before your next labs. Keep track of the time that you are off the meds and report it to your doctor.
Bransnana- when I called my endo with my hypo symptoms-twice- both times he said that I'm in normal range and any symptoms I was having had nothing to do with my thyroid. I then went to my regular doc, asking her to get me labs. Only after my old endo saw my labs did he say that I was hypo and then ordered new MM dose. He just wouldn't listen to me and he's more of a "no questions asked" type of endo, so I needed to move on. Fingers crossed I found a good endo...
I was sub-clinical at my original diagnosis back in late August. This may be wishful thinking, but could I be heading towards remission with these latest results? Maybe I could ask my new endo for TSI and TPO labs in the next few weeks???
The problem I had was I was left hypo for way to long. I was not that educated with this disease and I followed my docs advise...it took me a long time to climb out of the hypo rabbit hole. Dont let that happen to you. It was me that took control and reduced my meds to test remission...I just couldnt live in that hypo world any longer...Big Hugs...Kathy
Many people find that seeing an Endo is not worth it because of the fact (80%) that they mostly see those who are diabetics. Instead we look at seeing doctors who are holistic MD/NMD to help us and they tend to 'listen' better and understand what the thyroid does and the proper labs to order as well as when one gets either too hypER or hypO according to the Free Ts.
I see such a holistic doctor several times a year and see only the Endo once per year. It works out better this way for me.
{{{hugs}}}
There have been few stories of docs that actually know how to treat this disease properly...I am always truly amazed when I hear one. No one knows your body better than you do. Once you educate yourself on this disease and understand your labs vs meds vs diet vs emotional health...there is no reason why you can not take control of your treatment. That's not to say we dont need our docs...because we do...its just they have absolutely no way to truly understand our symptoms so they like to keep us in a nice safe place being hypo. It sucks. Like you...being hypo is so much worse for me than being hyper.
What I had to do is..since I already know where my sweet spot was....I would reduce my meds and wait for the results...if the results were good...I informed my doc with what I did. If the results were not positive...I made changes and kept the info to myself. What I found for me is...when I made a med change it was the 8th week mark that told the full story. There were only a few times in the beginning where I bounced around. After a while my doc realized that I knew this disease very well..so...she basically gave me free reign with her following the results. If I needed something...she just gave it to me. When I needed a T3 replacement...I explained my reasons why and she just wrote out the script. She had total confidence and trust in my decisions but that took some time to establish.
Hang in there courage...there are good docs out there..it took jjbrooks a few years to find her's and now she is back to good health and living a happy healthy life...you can do this...Big Hugs...Kathy
Kathy- thanks for the kind words. At the very least you are making me feel better by justifying my feelings and symptoms as well as making me feel like I'm not alone! Hypo sucks but I'm going to make it through... Thank you :) :) By the way- my name is Colleen... You guys are all so awesome- thank you for helping me!!!
I have gone along with the increase in dosage and see her again in 3 weeks. Labs drawn in 2 weeks.
I was wondering what are your symptoms that make you think you are hypo? I have increased arthritis in my wrists since November, have gained weight (although I broke my leg and have been laid up for 8 weeks) and I feel SOOO tired. I just wonder if I should be reducing my dosage or at this point since I see her in a couple weeks stay on it? I hope you are feeling better....
Dosing for Graves' is always based upon the FreeT4 level with the patient taking the lowest possible dose that will maintain the FreeT4 level in the upper half of the range.
The American Family Physician website has a section on the diagnosis and treatment of hyperthyroidism (Graves'):
http://www.aafp.org/afp/2005/0815/p623.html
Take a peek at the Treatment section....scroll down to the anti-thyroid drug section and then look at the section about methimazole.
You will see:
"TSH levels may remain undetectable for months after the patient becomes euthyroid and should not be used to monitor the effects of therapy."
Then take a peek at the section about PTU and you'll see:
"The goal is to keep the freeT4 level at the upper level of normal."
If your FreeT4 level was definitely in range, your doctor shouldn't have increased your dose.
And, if that dose increase happened back in November, you should have had labs done in December (4 wks. afterwards).
Being hypo means having thyroid hormone levels that are too low for the body's needs. Those levels might be in range but, that doesn't mean they are appropriate (remember, the FreeT4 level should be maintained towards the high end of the range).
Not everyone will have every symptom of hypothyroidism. Usually, we each have our own typical cluster of symptoms....and those symptoms can increase in number and/or intensity the further "off" our FreeT4 and FreeT3 levels are.
Here are a few sites that have hypothyroidism symptoms lists:
http://www.hypothyroidismrevolution.com/hypothyroidism-symptoms/
http://www.stopthethyroidmadness.com/long-and-pathetic/
It sounds like your endo is doing what my former endos did: looking at TSH and erroneously calling us hyper.
I hope you can get labs done sooner and maybe talk to the doctor on the phone after you get the results.
I apologize for not commenting about your situation.
You've already been given great advice thus far.
Sorry you had to visit hypohell......I know how horrible that is.
Endos seem notorious for blaming our issues on anything but the thyroid.
Best of luck to you moving forward!!
@cd- thanks for the words, you're right, I've been lucky to have great advice given :) Your words have helped me out and the article you have been posting frequently I have already printed out to take to my appointment with my new endo :) Very much appreciated!