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...
Please ignore the previous post -- I accidentally cut out part of my lab results. Apologies!
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Hi everyone!
This is my first post.
I've gone from hyper to hypo in 2 months. 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 some 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 , 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 the above blood tests plus some others for my liver etc. (those all came back within the normal range). Endo said the tests look fine, so he 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 decrease 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 swollen to the point 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/glands were swollen. I had other hypo-like symptoms and contacted my endo that I suspected I've become hypo. 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 state that I've become hypo and instead was very vague. All he said was: "Your symptoms may have possibly been caused by the change in thyroid levels".
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 also not reading my tests correctly. Additionally, the manner in which he handled my concerns clearly shows that's he's not the right doctor for someone with GD.
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!
**********************************
Hi everyone!
This is my first post.
I've gone from hyper to hypo in 2 months. 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 some 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 , 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 the above blood tests plus some others for my liver etc. (those all came back within the normal range). Endo said the tests look fine, so he 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 decrease 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 swollen to the point 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/glands were swollen. I had other hypo-like symptoms and contacted my endo that I suspected I've become hypo. 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 state that I've become hypo and instead was very vague. All he said was: "Your symptoms may have possibly been caused by the change in thyroid levels".
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 also not reading my tests correctly. Additionally, the manner in which he handled my concerns clearly shows that's he's not the right doctor for someone with GD.
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!
7/15/2011
Free T4 3.63 (Range 0.81-1.54)
TSH
***********************************************************************
Hi everyone!
This is my first post.
I've gone from hyper to hypo in 2 months. 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 some 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 less than 0.01 (Range 0.35-4.0)
*** Prior to starting methimazole. Had palpitations, itchiness, shortness of breath, lost 25 lbs in 3 months, choking, anxiety, etc. and other hyper symptoms.
8/5/2011
Free T4 3.39 (Range 0.81-1.54)
TSH less than 0.01 (Range 0.35-4.0)
T3 379 (Range 58-158)
TPOAB less than 3.0 (Range: less than 5.6)
ESR Westergren 8 (Range 0-20)
*** First appointment with endo. Methimazole started on 8/11.
10/3/2011
Free T4 1.1 (Range 0.81-1.54)
TSH less than 0.01 (Range 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 the above blood tests plus some others for my liver etc. (those all came back within the normal range). Endo said the tests look fine, so he 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 decrease 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 swollen to the point 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/glands were swollen. I had other hypo-like symptoms and contacted my endo that I suspected I've become hypo. 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 state that I've become hypo and instead was very vague. All he said was: "Your symptoms may have possibly been caused by the change in thyroid levels".
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 also not reading my tests correctly. Additionally, the manner in which he handled my concerns clearly shows that's he's not the right doctor for someone with GD.
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!
I am sorry you are suffering from all those overmedicated hypO symptoms. I see from your labs that it probably would've been a good idea to have reduced the ATD (antithyroid drug) doses at the 10/3/11 labs as your Free T4 had dropped below mid range.
Ideally it is a good idea to lab every four to six weeks all the while paying close attention to where your Free T4 is. If it gets too low, reducing the ATD, slow and steady which wins the race here, will help you and not have your levels bounce around (yo yoing hypER/hypO).
If you are able to get the Free T3 tested, I strongly recommend this in addition to the Free T4 and TSH. Most doctors either do not know or do not care that we feel the FT3 especially when we are hypER and hypO. The FT3 is the first one for us to feel it before we feel the FT4.
Your doctor telling you to stop the MMI (Methimazole) for three days and restarting on a smaller dose is fine.
Ask the new Endo that you'd like to lab more often until you find the correct MMI dose to keep you stabled for awhile. Usually this is 5 mg and less. That you want to have your Free T3 and Free T4 tested along with the TSH. Also to have copies of your lab results to keep in file and compare with your other ones and figure out which small 'wee' dose will help you keep you at the right place within the Free T4. For some people it can be at mid range to the upper third of range to feel their best at.
Any other Qs, please let us know.
{{{hugs}}} :-)
Thanks so much for your reply; it was very helpful and reassuring :-)
I have been feeling much better since I re-started at half a dose (5mg) of MMI.
I'm only just learning that most endocrinologists treat very few Grave's patients and that many of them do not know much about Grave's treatment.
Are situations like mine common? (Where the endo doesn't test frequently enough, only relies on TSH, over-medicates, and is overall under-educated about Grave's.) Would you say that it is especially difficult to find a good doctor for Grave's? (more than other conditions?)
What are qualities you would look for in a good Grave's specialist?
Unfortunately yes, the situation you described for yourself is very, very common. The number one reason is that the majority of the Endos (80%) deal more with diabetic patients rather than patients with thyroid disease.
I see a holistic MD/NMD three to four times per year. I pay out-of-pocket costs to see him. He understands the thyroid tests I need done. At least my labs are paid for.
Any type of doctors with other types of diseases such as the Rheumatologists for arthritis may understand very little about it. As an example, I used to see a Rheumy for the Rheumatoid Arthritis that I have. While she was very knowledgeable about running the proper tests for the RA and was agreeable to my taking vitamins/supplements to help with the arthritis as well as a bit of change of diet, she pushed heavily on the biologic drugs which did much damage to my health. I had to stop taking these and had my holistic doctor worked more on the RA for me as the biologic drugs were suspected of causing MS-like symptoms for me.
{{{hugs}}}