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...
Hi everyone!
This is my first post.
I've gone from hyper to hypo in 2 months and from the way my endo has been handling this, it has become apparent to me that I need to change endos. I'm in an HMO (Kaiser, Southern California) so this may take a while. I need to advice in the meantime.
History:
* Diagnosed with Grave's in 8/2011
* Started on Methimazole, 10mg per day on 8/11/2011
* My dosage has never been changed.
Labs:
7/15/2011
Free T4 3.63 (Range 0.81-1.54)
TSH e 0.35-4.0)
*** Second appointment with endo.
Feeling noticeably better. Most hyper symptoms gone or decreased. During this appointment, endo tells me my next appointment will be in 6 months and next labs will be in 3 months. He told me to stay at the 10mg/day of methimazole.
10/27/2011
Free T4 0.9 (Range 0.81-1.54)
TSH 0.01 (Range 0.35-4.0)
*** Shortly after the second appointment, I start having very bad muscle cramps all over my body, sore/achy joints, and pins and needles.
I contacted endo and he ordered these blood tests plus some others for my liver etc. (those all came back within the normal range), but said the tests look fine, so brushed my concerns off. No change of dosage.
During the next two months, I was miserable. Muscle cramps got worse, the hearing in my left ear would intermittently become worse for 7-10 days at a time. My menstrual cycles became irregular. I had one late period, then had another period less than 3 weeks later. My breasts became so swollen that they could not fit into any of my bras during the 10 days around each of the periods. They were also painful and felt strangely lumpy, like the nodes were swollen. I had other hypo-like symptoms and contacted my endo that I suspected I've become hypo, but he brushed it off again, telling me that he had no explanation and that "sometimes our bodies do strange things".
At the beginning of the year, I started developing small clusters of mosquito-bite like rashes -- a couple on my arms and back. My upper thigh also has a bumpy rash on it.
1/9/2012
Free T4 0.74 (Range 0.81-1.54)
TSH 9.24 (Range 0.35-4.0)
*** Finally! Time for my routine test! I wasn't too surprised to see that it looks like I've become hypo. In fact, I'm relieved, because all of this time I thought I was going crazy. I received an automated e-mail with test results, but didn't hear from endo for 2 days, so I contacted him. I had asked if this means I'm hypo, but he would not say that I'm hypo and instead was very vague. All he said was: "Your symptoms may have possibly been caused by the change in thyroid levels". He would not answer my other questions.
He instructed me to stop taking methimazole for 3 days, then to start taking 5mg per day. Next blood test in 6 weeks.
After finally realizing that I'm not crazy 2 days ago, I've been reading up on dosage, TSH levels, etc. as much as I can. It's now obvious to me that not only did my doctor not monitor me correctly, but he was not reading my tests correctly. Additionally, the way how he handled my concerns clearly means he has to go. It might take a while until I can change endos, due to my HMO, so in the meantime, I need some advice.
My questions:
1. How often should I be getting my labs done?
2. Should I be getting more than TSH and Free T4 tested?
3. Should my next lab be done sooner than 6 weeks?
4. Would you say that his instructions to stop taking methimazole for 3 days then to start at half a dose (5mg) sound correct in this case?
5. What are good questions to ask potential new endos?
Thanks so much for reading this long post :-)
Much appreciated!
This is my first post.
I've gone from hyper to hypo in 2 months and from the way my endo has been handling this, it has become apparent to me that I need to change endos. I'm in an HMO (Kaiser, Southern California) so this may take a while. I need to advice in the meantime.
History:
* Diagnosed with Grave's in 8/2011
* Started on Methimazole, 10mg per day on 8/11/2011
* My dosage has never been changed.
Labs:
7/15/2011
Free T4 3.63 (Range 0.81-1.54)
TSH e 0.35-4.0)
*** Second appointment with endo.
Feeling noticeably better. Most hyper symptoms gone or decreased. During this appointment, endo tells me my next appointment will be in 6 months and next labs will be in 3 months. He told me to stay at the 10mg/day of methimazole.
10/27/2011
Free T4 0.9 (Range 0.81-1.54)
TSH 0.01 (Range 0.35-4.0)
*** Shortly after the second appointment, I start having very bad muscle cramps all over my body, sore/achy joints, and pins and needles.
I contacted endo and he ordered these blood tests plus some others for my liver etc. (those all came back within the normal range), but said the tests look fine, so brushed my concerns off. No change of dosage.
During the next two months, I was miserable. Muscle cramps got worse, the hearing in my left ear would intermittently become worse for 7-10 days at a time. My menstrual cycles became irregular. I had one late period, then had another period less than 3 weeks later. My breasts became so swollen that they could not fit into any of my bras during the 10 days around each of the periods. They were also painful and felt strangely lumpy, like the nodes were swollen. I had other hypo-like symptoms and contacted my endo that I suspected I've become hypo, but he brushed it off again, telling me that he had no explanation and that "sometimes our bodies do strange things".
At the beginning of the year, I started developing small clusters of mosquito-bite like rashes -- a couple on my arms and back. My upper thigh also has a bumpy rash on it.
1/9/2012
Free T4 0.74 (Range 0.81-1.54)
TSH 9.24 (Range 0.35-4.0)
*** Finally! Time for my routine test! I wasn't too surprised to see that it looks like I've become hypo. In fact, I'm relieved, because all of this time I thought I was going crazy. I received an automated e-mail with test results, but didn't hear from endo for 2 days, so I contacted him. I had asked if this means I'm hypo, but he would not say that I'm hypo and instead was very vague. All he said was: "Your symptoms may have possibly been caused by the change in thyroid levels". He would not answer my other questions.
He instructed me to stop taking methimazole for 3 days, then to start taking 5mg per day. Next blood test in 6 weeks.
After finally realizing that I'm not crazy 2 days ago, I've been reading up on dosage, TSH levels, etc. as much as I can. It's now obvious to me that not only did my doctor not monitor me correctly, but he was not reading my tests correctly. Additionally, the way how he handled my concerns clearly means he has to go. It might take a while until I can change endos, due to my HMO, so in the meantime, I need some advice.
My questions:
1. How often should I be getting my labs done?
2. Should I be getting more than TSH and Free T4 tested?
3. Should my next lab be done sooner than 6 weeks?
4. Would you say that his instructions to stop taking methimazole for 3 days then to start at half a dose (5mg) sound correct in this case?
5. What are good questions to ask potential new endos?
Thanks so much for reading this long post :-)
Much appreciated!
lusun
Please ignore/delete this post! Looks like I accidentally cut off some of my lab results. Apologies!
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