[Princess]

#1018941

I was recently told in August that I have Grave’s Disease and I opted for the medicine. I was on PTU for six-weeks and was recently told that I have gone hypo. My doctor has taken me off my meds for another six-weeks until my next blood test which has been every six-weeks since July. Her explanation is either my thyroid has burned itself out (which I read usually takes 5 or more years), I am in remission, or she told me that this some times happens with some patients. They can go from hyper to hypo to hyper again. I am ready to get the blood test in six-weeks but am thinking about not treating this problem any further. Since my thyroid has been hyper I had to be placed on blood pressure medication because my blood pressure which has always been perfect was about 147 over 92. I am off this medication at the moment but must go back in one-week for another reading. This disease has caused me to constantly get my blood tested and right now I am frustrated because I have gone from one extreme to another. If I do not treat my thyroid no matter what it is doing in six-weeks what harm can it do me? I really just want to ignore this problem!

[LaurelM]

#1067967

Hi,

Treatment for Graves is often frustrating when trying to normalize your levels. With Anti-thyroid meds (methimazol & PTU) it can be a bit like the pedulum in a clock. You start hyper on one side and are started on a dose of ATDs then swing over to the hypo range. The Dr then decreases your dosage and you just have to wait about 6 weeks to see how high the pedulum will swing back again the other way. With some luck, it will only take a very few dosage changes to get that pendulum (your thyroid levels) to stop swinging and come to rest at your normal level. I went pretty hypo too after about 8 weeks on ATDs and my dosage was reduced. I think we tweaked my dosage about 3-4 times before I was consistant. It felt like it took forever at the time but in hindsight (and my normally patient nature returned), it wasn’t that long.

I was told that remission usually takes 1-2 years on ATDs to achieve if it is going to happen (it did for me).

Ignoring Graves can have serious permanent long term affects including but not limited to heart damage and osteoperosis. Please don’t ignore this. It will take some time, but with treatment, it will get better.

[Princess]

#1067968

LaurelM,

Thank you for sharing your story. My friends and family want me to find a new doctor and I am just tired of going for blood test after blood test. Then my blood pressure now is an issue and I must deal with that. I have gone from never taking medication to forgetting if I have taken all of mine. Now, I wait to see what my thyroid decides to do next. My family does not understand sometimes the effects this can have on my body. I have been off the medication for one-week and my heart palpitations have returned. I guess if I thought I ignored the problem it would just go away. My husband wants me to have the RAI but I have a real fear of gaining weight and do not want to consider that option unless I was not given any choice.

It helps to talk to people who can understand what I am feeling. I truly appreciate you sharing your story.

[LaurelM]

#1067969

On a practical note, I had to get a pill organizer to remember if I had taken my meds. My short term memory was shot. It has since recovered. Let your Dr know about the heart palpitations. It is OK to get a second opinion too if you are not comfortable about your treatment.

[Kimberly]

#1067970

Princess wrote:I was on PTU for six-weeks and was recently told that I have gone hypo. My doctor has taken me off my meds for another six-weeks until my next blood test which has been every six-weeks since July. Her explanation is either my thyroid has burned itself out (which I read usually takes 5 or more years), I am in remission, or she told me that this some times happens with some patients. They can go from hyper to hypo to hyper again.

Hello – It seems to me that your doctor should have considered the third option that LaurelM mentioned…that sometimes we swing from hyper to hypo and back until we find an appropriate maintenance dose of Anti-Thyroid Drugs. I wonder how much experience she has treating patients with ATDs. Perhaps your family’s suggestion to find another endo is a good one.

I hate getting blood drawn as well, but it’s really necessary for you at this point to make sure that you get your levels stabilized…so you can hopefully start feeling good again!

Why is your husband pushing RAI? Is it because he thinks the problem will be "over with" once the RAI is done? If you read the posts from others on this board, you will see that you *still* have to go through a stabilization process…except that you are adjusting the dose of Thyroid replacement instead of ATDs. All three treatment options have pros and cons, so it is important to do your own research and pick the one that *you* feel most comfortable with. It’s not your husband’s thyroid. ” title=”Wink” />

Best of luck!

[prknight]

#1067971

Princess wrote:LaurelM,

Thank you for sharing your story. My friends and family want me to find a new doctor and I am just tired of going for blood test after blood test. Then my blood pressure now is an issue and I must deal with that. I have gone from never taking medication to forgetting if I have taken all of mine. Now, I wait to see what my thyroid decides to do next. My family does not understand sometimes the effects this can have on my body. I have been off the medication for one-week and my heart palpitations have returned. I guess if I thought I ignored the problem it would just go away. My husband wants me to have the RAI but I have a real fear of gaining weight and do not want to consider that option unless I was not given any choice.

It helps to talk to people who can understand what I am feeling. I truly appreciate you sharing your story.

I can relate to you, Princess. I have been on methimazole since the end of June. The first month after taking 30 mg a day my free T4 went from 2.19 to .78 so my endo halved my dosage and a month later I went down to .68. I have lost so much hair and have gained 9 pounds in 6 weeks. I am now taking .5 mg. I had my level checked again two weeks ago and it went up to 1.00. I am still taking .5 mg and can feel hyper coming back. I am starting to have heart palpitations again. I am frustrated, too! My TSH was .001 at the beginning and hasn’t gone up since. I just wondered if I will ever get regulated and off medicine. I don’t like gaining the weight. I am exercising and eating healthier. Just keep putting the pounds on!

[Princess]

#1067972

Since I have gone hypo I luckily have not seen any weight gain. However, I am barely eating because I have that very same fear. I know it is probably my vanity kicking in but I just do not like to gain weight. This is why I am considering the "doing nothing" treatment. I know that I am going hyper again because my hair is beginning to fall out in the shower. This website is great because we all can feel each others pain and others cannot feel the sense of frustration. My endo sends me for bloodwork every six weeks. I get there at 7:15 am and have to wait over a half hour behind all the senior citizens that do not have to drive 40 minutes to their jobs which also adds to my frustrations.

What are you planning to do?

[prknight]

#1067973

"Princess" wrote:

Since I have gone hypo I luckily have not seen any weight gain. However, I am barely eating because I have that very same fear. I know it is probably my vanity kicking in but I just do not like to gain weight. This is why I am considering the "doing nothing" treatment. I know that I am going hyper again because my hair is beginning to fall out in the shower. This website is great because we all can feel each others pain and others cannot feel the sense of frustration. My endo sends me for bloodwork every six weeks. I get there at 7:15 am and have to wait over a half hour behind all the senior citizens that do not have to drive 40 minutes to their jobs which also adds to my frustrations.

What are you planning to do?[

Hey Princess,
I think I am going to give it a year. I heard there is only about a 30 percent chance that I will stay in remission at that time. If it comes back, then I will zap it. What did your endo tell you about taking medication? I have a friend who gained 30 pounds after she did RAI. She is now on a supplement and has lost the weight. Most endos will zap the thyroid. I am thankful that mine did give me options. I went to my endo on Tuesday. I told him I felt like I was going hyper. I have noticed my hair falling out, too! I am having a few heart palpitations. He increased my dosage to 10 mg. I will have blood work done in a month. I try to get to the clinic when it opens, which is 6:30 a.m. I know how frustrating it can be. I was hoping it would be a quick fix and it is not. Hang in there! So glad to have someone to talk to that can relate to how I am feeling! Thanks!

[Kimberly]

#1067974

For those who are having issues getting labs done, do you have a choice as to which lab you use? My endo’s office uses two different labs, and one of them (Sonora Quest – I think they are only in Arizona) actually books online appointments. This is soooooo much more convenient!

[Author]

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