Newly diagnosed

[Kint111]

Hi everybody,

Well here I'm.....:(

I was diagnosed about a month ago with GD. I can't believe it myself, just a few months ago, I was fit/ eating healthy and all of a sudden I lost 10lbs in about a month.

Anyway, right now, I'm overwhelm with all the info I'm reading online about GD. :(

I better get to my questions. I really hate my Endo right now, she keep insisting on me getting an RAI.

My problem started 4 weeks ago, while I was on Methimazole ( I was fine the first three week) and all of a sudden I develop hives all over my body. I stop taking methimazole for a week, thinking I got allergy from seafood or something. After a week, my hives were gone and I started back Methimzaole.....and yesterday my hives are back.

Now, my Endo again told me to get a RAI (and surgery).......I told her many time that those two would be the last option.

I have to ask you all, what other option (ATD) should my next option be? PTU (would I be allergic to that)? Or Carbimazole?

Please help me with any info/ suggestion on this?

Thanks all,
Kin

[Lovlkn]

Hi everybody,

Well here I'm.....:(

I was diagnosed about a month ago with GD. I can't believe it myself, just a few months ago, I was fit/ eating healthy and all of a sudden I lost 10lbs in about a month.

Anyway, right now, I'm overwhelm with all the info I'm reading online about GD. :(

I better get to my questions. I really hate my Endo right now, she keep insisting on me getting an RAI.

My problem started 4 weeks ago, while I was on Methimazole ( I was fine the first three week) and all of a sudden I develop hives all over my body. I stop taking methimazole for a week, thinking I got allergy from seafood or something. After a week, my hives were gone and I started back Methimzaole.....and yesterday my hives are back.

Now, my Endo again told me to get a RAI (and surgery).......I told her many time that those two would be the last option.

I have to ask you all, what other option (ATD) should my next option be? PTU (would I be allergic to that)? Or Carbimazole?

Please help me with any info/ suggestion on this?

Thanks all,
Kin

Welcome Kin,

PTU could be another option for you to try.

What lab tests have they done on you?

What dose of Methimizole were you taking and how often?

Lovlkn

[Kint111]

Welcome Kin,

PTU could be another option for you to try.

What lab tests have they done on you?

What dose of Methimizole were you taking and how often?

Lovlkn

Thanks, Lovlkn.

The methimizole was 30mg a day (3 tablet) The nurse told me on the phone that if I'm allergic to methimizole there is a chance I'll be allergic to PTU.

The test result:

T4, 6.1
TSH, <0.015

That's all I have, after these tests I was sent to a endo and no farther test was giving back to me. Is that more? Or Should I ask for all test result back?

Thanks again,
Kin

[Andros]

Hi everybody,

Well here I'm.....:(

I was diagnosed about a month ago with GD. I can't believe it myself, just a few months ago, I was fit/ eating healthy and all of a sudden I lost 10lbs in about a month.

Anyway, right now, I'm overwhelm with all the info I'm reading online about GD. :(

I better get to my questions. I really hate my Endo right now, she keep insisting on me getting an RAI.

My problem started 4 weeks ago, while I was on Methimazole ( I was fine the first three week) and all of a sudden I develop hives all over my body. I stop taking methimazole for a week, thinking I got allergy from seafood or something. After a week, my hives were gone and I started back Methimzaole.....and yesterday my hives are back.

Now, my Endo again told me to get a RAI (and surgery).......I told her many time that those two would be the last option.

I have to ask you all, what other option (ATD) should my next option be? PTU (would I be allergic to that)? Or Carbimazole?

Please help me with any info/ suggestion on this?

Thanks all,
Kin

Hi,Kint.............it is hard to say what you may or may not be allergic to. The only thing you can do is try something else.

PTU is notoriously hard on the liver.

You may wish to read this.........
http://www.uptodate.com/patients/content/topic.do?topicKey=~K7dgOAIby0pAB7

And of course you have the right to chose the course that is best for you and for your own sake, you do need to "try" the antithyroid med route. But, this is very iffy.

Those of us who have been around a long time know that.

I am sure others will have some good input for you.

Are your eyes okay? Do you have a Goiter? Myxedema?

[Kint111]

Hi Andros,

Thanks for the link. I have read before that PTU is hard on our liver, but I don't see any alternative in ATD choice.

I just like to know what other ATD are out there for me to try. Is Carbimazole same as Methimizole?

My eyes are ok, slight larger Goiter and no Myxedema that I know of.

Does that make a different?

Thanks again,
Kin

[lavender]

Hi Kit, Sorry you have to be here!
Carbimazole is the same thing as PTU. As far as I have read, Methimazole and PTU are the only two ATDs. It seems that some people tolerate them well, are able to get their thyroid symptoms under control and continue on them long term or go into remission. I have read on other thyroid boards of people who have stayed on ATDs for years and adjusted their lifestyle/diet to treat their GD.
This was not for me. My condition was so severe that I was miserable. I did not feel well on ATDs, and was not willing to suffer any longer than I had to. I chose surgery, and I feel tons better.
Usually, the options for treatment are: 1.ATDs 2. RAI 3. Surgery
Unfortunately, that is it.
You will ultimately have to choose what is best for you based on your symptoms and what feels right to you. No doctor has the right to force you into anything you don't want.

[Kint111]

Hi lavender,

Thanks for reply.

May I ask you why you went with surgery instead of RAI? So are you currently free from GD? Do you know how much more surgery vs. RAI?

Thanks again,
Kin

[lavender]

I will never be free from GD. This is a chronic auto-immune disease. There is no cure. Only treatment for symptoms. I just no longer have a thyroid for my immune system to attack, and my thyroid can no longer wreak havoc on my body.
I don't want to blow you off, but I have written extensively on my choice for surgery on this board already, and you may want to browse through some of the other threads. I think if you click on my name, there is a link to my prior posts and you can read more.
Basically, I know that my body tends to be hyper-sensitive to the effects of medications, and I was concerned about some of the potential side-effects of RAI. I felt like if I had cancer, I would choose RAI, otherwise, since there was another option (surgery) I felt it was not necessary to expose my body to toxic chemicals.
RAI can worsen or trigger Graves Eye Disease, and even though my doctors would not confirm any issues with my eyes, I knew I was having a lot of problems, and did not want to make anything worse.
Also, from what I read, RAI can take months or years to control hyper symptoms. I was not willing to risk the wait. I was completely disabled from my GD for over 4 months, and I am sure I was sick for many years prior to diagnosis. My case was very extreme. I ended up in the hospital with thyroitoxicosis before I got treatment, I was having chest pains, my heart rate was over 120 at rest, and my BP was severely elevate. Luckily, there was no permanent damage to my heart.
My feeling was that this gland almost killed me and I wanted it out. I did a lot of reading into my options, and the more I read, the more certain I was of my decision.
I am 32, have a full scholarship to attend a grad school program that I have been waiting years to get into, and I wanted my life back. I could not think clearly even on ATDs with my thyroid levels controlled, I was super-emotional, in an out of body state with little memory, and knew grad school would not be possible unless I got this under control first.
Even surgery was not a guarantee, but it felt right to me. Thyroid levels immediately dropped because my thyroid was gone. I have had some complications, but so far they have been manageable, and I feel tons better!
You will have to decide what is right for you, and I would suggest getting some feedback from those who have had RAI. It is much less invasive, and the better choice for some folks. I think the most important thing is getting a proper diagnosis, then feeling comfortable in your choice of treatment.

[punstress]

My endocrinologist was seemingly obsessed with killing my thyroid, even though it was very responsive to methimazole. Every few weeks we cut the dose down and now I'm in remission, no drugs at all. I'm not back to 100%; my eyes are too far forward and my legs always feel weak, but most of the other symptoms are long gone.

Thirty milligrams sounds high. Try halving that and see how you feel.

[desrtbloom]

Hi!

First, get a new endo! You need an endo that will listen and work with you. This is your health and only you know how you feel regardless of your lab work, etc. Having a great doctor on your side is crucial.

Second, I totally agree with Lavender. I was a mess for months and my thyroid was so messed up RAI wasn't even an option. I was sort of glad in retrospect as it does take months after RAI for symptoms to go away, if the do. So surgery was required for me as my symptoms were too severe and being on the ATD can cause liver damage and I wanted no part of that. Anyway, I do feel much better since the surgery. I just had it four and a half weeks ago, so its still all new. Immediately after my surgery though, my horrible joint pain was gone and hasn't come back. Many of my other symptoms are going away as well.

I just wanted that nasty thing out of my body because it was affecting every aspect of my life and my health was going down hill fast.

Thyroid disease takes time to resolve, so you have to be patient which can be very hard when you aren't feeling well and just want to fell better.

I agree that your dosage may be a little high. I would see if you can get into a new Endo ASAP.

Hang in there! It takes time but it will get better.

Patti

[Kint111]

Thanks for the replied.

Here is my latest test result: (I don't exactly know what these are yet)

T4, FREE 3.5
T3, FREE 11.4
TSH, SENSITIVE 0.016

My endo and I will have a phone visit and I'm sure she will say "RAI!"

Here is my another questions to you all is, what are my option now?

1) Switch to PTU to see if I'm allergic to that (how much mg should I start off with?)
2) Will staying on Methimizole but with a lower dosage (lower than 30mg) with see if I react to that be an option too?

Let me know what you all think because this is the last time I'm seeing this endo because I made a appointment with a MD this upcoming 09/09.

Thanks again,
Kin

[Kint111]

Can somebody tell me how severe my condition?

T4, FREE 3.5
T3, FREE 11.4
TSH, SENSITIVE 0.016

According to many site I've been on. Hives/ rash are due to a high methimizole dosage? I need to know because I'm meeting with my Endo tomorrow and I wanted to see if we can lower the mg to like 10mg a day.

Thanks all and wish me luck tomorrow.
Kin

[Andros]

Can somebody tell me how severe my condition?

T4, FREE 3.5
T3, FREE 11.4
TSH, SENSITIVE 0.016

According to many site I've been on. Hives/ rash are due to a high methimizole dosage? I need to know because I'm meeting with my Endo tomorrow and I wanted to see if we can lower the mg to like 10mg a day.

Thanks all and wish me luck tomorrow.
Kin

Hi and thank you for the results but due to the fact that different labs use different ranges, it is hard to give you an answer. Do you have the ranges?

I wish you all the very best tomorrow and will be anxious to hear from you.

Try to always get copies of your labs so you have the ranges also. Guessing is not good when it comes to your health status.

[Kint111]

Hi and thank you for the results but due to the fact that different labs use different ranges, it is hard to give you an answer. Do you have the ranges?

I wish you all the very best tomorrow and will be anxious to hear from you.

Try to always get copies of your labs so you have the ranges also. Guessing is not good when it comes to your health status.

Thanks! I do need that.

Oh sorry, I do have the result.

Here is the range: ** standard range**

T4, FREE 3.5 **0.8 - 2.2 ng/dl**

T3, FREE 11.4 **2.8 - 5.2 pg/ml**

TSH, SENSITIVE 0.016 **0.465 - 4.68 uIU/ml**

Please let me know what you think?

Thanks,
Kin

[Kint111]

Well a little update to your

After a month on 15mg of methz (3x a day) my T4 and T3 are back to normal. All except my tsh level. During this month the rash/hives isn't as bad (very small outbreak) when I was taking 30mg. The doctor says it was fine for me to take Zyrtec along with methz.

So I started off taking maybe twice a week and about a week into it maybe just one Zyrtec a week. One interested thing he still think
I'm allergic to methz and is not convince about the dosage or about the anti-thyroid med(usually a pretty good sized dose) "excess" hormone over time that was built up for your body to rid itself of . This takes a few months to stabilize. I even told him if I was allergic to it, it wouldn't take 3 week to start getting hives/ rash (am I right on this?)

I feel much better now compare to before no more racing heart and I seem to gain back a little over 10lbs. The doctor says I can get back on exercises (back to P90X!!)

Well my next step is wait another six week for a blood test to see if my tsh would climb back up then after 3 months I will have another blood test and a phone visit right after.

In the mean time, my doc warns me about being under-active thyroid? Because my t3 and t4 might drop below normal? Anyway, he is still pushing me to do RAI. He told me even if I'm back into remission, I still have to methz (5mg maintenance dosage) for the rest of my life.

Anyway here are my test result:

T3 Free (standard range 2.8-5.2 pg/ml) = 11.4 (08/24/10) and 3.6 (10/1/10)
T4 Free (standard range 0.8-2.2 ng/dl)) = 6.1 (6/4/10) 3.5 (8/24/10) and 1.1 (10/1/10)

TSH (Standard range .465-4.68 uIU/ml) = .016 (8/24/10) and .015 (10/1/10)

Thank-you for reading. And let me know what you all think.

Thanks,
Kin

[Andros]

Hi everybody,

Well here I'm.....:(

I was diagnosed about a month ago with GD. I can't believe it myself, just a few months ago, I was fit/ eating healthy and all of a sudden I lost 10lbs in about a month.

Anyway, right now, I'm overwhelm with all the info I'm reading online about GD. :(

I better get to my questions. I really hate my Endo right now, she keep insisting on me getting an RAI.

My problem started 4 weeks ago, while I was on Methimazole ( I was fine the first three week) and all of a sudden I develop hives all over my body. I stop taking methimazole for a week, thinking I got allergy from seafood or something. After a week, my hives were gone and I started back Methimzaole.....and yesterday my hives are back.

Now, my Endo again told me to get a RAI (and surgery).......I told her many time that those two would be the last option.

I have to ask you all, what other option (ATD) should my next option be? PTU (would I be allergic to that)? Or Carbimazole?

Please help me with any info/ suggestion on this?

Thanks all,
Kin

Hi there, Kin and welcome. You could try PTU but each of these antithyroid meds do have their side effects and contraindications.

What is your goal? That would be important to know. To my knowledge no one I known has ever gone into permanent remission.

Most of us throw in the towel as they say because in reality, one cannot go on like that. It ruins your life. I also would say the 99.9% of us who have had RAI or surgery are happy about it.

Do you have a goiter? How are your eyes?

Others will comment, I am sure.

[tina]

Kint... I was just diag. with Graves last month. I know how frustrating it is in the beginning.. You are so unsure of what is best for you.. I was on Methimazole 10mg 3x day until I had a reaction to it. I have just started taking PTU but will only be on it long enough to prepare my thyroid for surgery (2 months max is what my endo said). Good luck to you and hang in there! There are alot of very kind and caring people on here that will give you great advice! Just remember to listen to your body and do what you feel is best for you. Keep us updated on how you are doing!

[Kint111]

Hi Andros,

Thanks for the help.

I think I'm going (my goal) to take Methz as long as I can and if possible put it into remission and continue with it on a maintenance dosage (if possible). I'll see if by then how long before it will come back then my last choice will be RAI. Does that make sense?

As far as, goiter and eyes, they seem to be fine (my doc said too).

And Tina, thanks for the kind word. I really appreciated that.

Thanks,
Kin

[Andros]

Hi Andros,

Thanks for the help.

I think I'm going (my goal) to take Methz as long as I can and if possible put it into remission and continue with it on a maintenance dosage (if possible). I'll see if by then how long before it will come back then my last choice will be RAI. Does that make sense?

As far as, goiter and eyes, they seem to be fine (my doc said too).

And Tina, thanks for the kind word. I really appreciated that.

Thanks,
Kin

Kin; most of us have felt the same as you. You deserve and are entitled to try this. As a patient, it is your right to do so and we will be ultra-supportive of you. You can count on it.

You always have to satisfy your own mind and you won't ever know unless you try.

What antibodies' tests have you had run?

[Kint111]

What antibodies' tests have you had run?

Hi, sorry I'm not sure I understand what you mean by antibodies test? All the test I did was blood work and taking iodine uptake test (this is how they determine I have GD) Other then that nothing else.

Can you refer me to a website that I can read about the antibodies you are referring to?

Thanks again

Kin

[Andros]

Thanks! I do need that.

Oh sorry, I do have the result.

Here is the range: ** standard range**

T4, FREE 3.5 **0.8 - 2.2 ng/dl**

T3, FREE 11.4 **2.8 - 5.2 pg/ml**

TSH, SENSITIVE 0.016 **0.465 - 4.68 uIU/ml**

Please let me know what you think?

Thanks,
Kin

Thank you, Kin!! Wow! You are still very hyper as of these readings. When were these labs taken? Poor baby. You cannot be feeling good.

Thank you so very much for posting the ranges; you have no idea how helpful this is.

[mommyjewel]

I was diagnosed in July with hyperthyroidism/graves. I was placed on the Tapazole (Methimazole) shortly after being diagnosed. I was on the Tapazole for 4-5 weeks and then I developed the itching on the soles of my feet/hands and from there the hives spread. I also started to wheeze and had a horrible cough.

After stopping the tapazole these symptoms went away. I started the PTU a couple of days after stopping the Tapazole. I have been on the PTU since the beginning of September as so far I have not had an allergic reaction.

My endo said that some people are allergic to the Tapazole but not the PTU and some people are allergic to both. I could be on the PTU for days, months, and even years and then develop an allergic reaction but there is no way to know beside taking the medication to know if I will develop the allergic reaction.
hugs3

[Kint111]

Thank you, Kin!! Wow! You are still very hyper as of these readings. When were these labs taken? Poor baby. You cannot be feeling good.

Thank you so very much for posting the ranges; you have no idea how helpful this is.

Hi Andros,

These are my new reading as of 10/01/10

My test result:

T3 Free (standard range 2.8-5.2 pg/ml)

=11.4 (08/24/10) and 3.6 (10/1/10)

T4 Free (standard range 0.8-2.2 ng/dl))

= 6.1 (6/4/10) 3.5 (8/24/10) and 1.1 (10/1/10)

TSH (Standard range .465-4.68 uIU/ml)

= .016 (8/24/10) and .015 (10/1/10)

As a result, I feel a lot better.

Thanks,
Kin

[Kint111]

I was diagnosed in July with hyperthyroidism/graves. I was placed on the Tapazole (Methimazole) shortly after being diagnosed. I was on the Tapazole for 4-5 weeks and then I developed the itching on the soles of my feet/hands and from there the hives spread. I also started to wheeze and had a horrible cough.

After stopping the tapazole these symptoms went away. I started the PTU a couple of days after stopping the Tapazole. I have been on the PTU since the beginning of September as so far I have not had an allergic reaction.

My endo said that some people are allergic to the Tapazole but not the PTU and some people are allergic to both. I could be on the PTU for days, months, and even years and then develop an allergic reaction but there is no way to know beside taking the medication to know if I will develop the allergic reaction.
hugs3

Oh Mommyjewel, Thanks for sharing, knowing that I'm not alone on this. Really I'm so sorry heard about your situation.

While taking Tapzole did your Endo said it was ok to take Zyrtec at the same time? I've read and heard from many w/ GD if you are ok (no side effect beside being drowsy) Did your Endo warn you about the side effects of PTU in some?

Anyway, each in our own, we all do way what is best for us or our body.

Best wishes!!

Kin

[Andros]

Hi Andros,

These are my new reading as of 10/01/10

My test result:

T3 Free (standard range 2.8-5.2 pg/ml)

=11.4 (08/24/10) and 3.6 (10/1/10)

T4 Free (standard range 0.8-2.2 ng/dl))

= 6.1 (6/4/10) 3.5 (8/24/10) and 1.1 (10/1/10)

TSH (Standard range .465-4.68 uIU/ml)

= .016 (8/24/10) and .015 (10/1/10)

As a result, I feel a lot better.

Thanks,
Kin

And you certainly should feel a lot better. Good grief; what a difference in the FT4 and FT3 and by the way, the TSH will soon follow. There appears to be a lag time w/signaling. LOL!! It will go up a bit.

Is doc going to keep you on the same dosage of Methimazole?

[lavender]

Kin, it is good to hear that you are feeling better, and that your labs have come down.
If the methimazole continues to make you itch, you could ask to try PTU and see how you feel on that.
If you are feeling better, you may have some time to make a decision that feels good to you.
Have you thought about surgery instead of RAI? Do you have any gut reactions when you consider the different options? Are you hopeful that you will go into remission?
Ultimately, this is your choice, and I think you will be most satisfied with the outcome if you listen to your own body and feel good about the treatment you are getting.

[Kint111]

And you certainly should feel a lot better. Good grief; what a difference in the FT4 and FT3 and by the way, the TSH will soon follow. There appears to be a lag time w/signaling. LOL!! It will go up a bit.

Is doc going to keep you on the same dosage of Methimazole?

Hi Andros,

The doc told me to continue to take 15mg of methimazole for 6 more week and then do a blood test afterward and see my result. He said most likely he will lower the dosage to 5mg or 10mg, depending on the test.

I do feel much much better now, thank-you!

Kin

[Kint111]

Kin, it is good to hear that you are feeling better, and that your labs have come down.
If the methimazole continues to make you itch, you could ask to try PTU and see how you feel on that.
If you are feeling better, you may have some time to make a decision that feels good to you.
Have you thought about surgery instead of RAI? Do you have any gut reactions when you consider the different options? Are you hopeful that you will go into remission?
Ultimately, this is your choice, and I think you will be most satisfied with the outcome if you listen to your own body and feel good about the treatment you are getting.

Hi Lavender,

The itch is some what tolerable. If my doc is ok with me taking Zyrtec once a week. I think I'm going to stay with Methimzole instead of switching to PTU because of less damaging affect (liver damage? Am I right?)

Right now, surgery and RAI is at the very back of my mind. I'm (my goal) going to continue taking methz. long as I can and hopefully put it into remission and if it does I will see if I can stay on a maintenance dosage. I know it might be rest of my life..... But we'll see how things goes. I hope that make sense.

Thanks,
Kin

[Andros]

Hi Andros,

The doc told me to continue to take 15mg of methimazole for 6 more week and then do a blood test afterward and see my result. He said most likely he will lower the dosage to 5mg or 10mg, depending on the test.

I do feel much much better now, thank-you!

Kin

Thank you for letting us know and I am so so glad you are feeling better!! Stay that way!

[lavender]

Hi Lavender,

The itch is some what tolerable. If my doc is ok with me taking Zyrtec once a week. I think I'm going to stay with Methimzole instead of switching to PTU because of less damaging affect (liver damage? Am I right?)

Right now, surgery and RAI is at the very back of my mind. I'm (my goal) going to continue taking methz. long as I can and hopefully put it into remission and if it does I will see if I can stay on a maintenance dosage. I know it might be rest of my life..... But we'll see how things goes. I hope that make sense.

Thanks,
Kin

Glad to hear you're feeling better. I think PTU does have some liver risk. As long as the methz is working and you can tolerate the side effects, it sounds like you have time to make a decision or see if your thyroid goes into remission.

[Paytonmascha]

I just got diagnosed last week & I'm only 13, it kinda scares me that I have this, & I don't know what to expect in the future, I just need help, I need someone to talk
to that got this when they were younger or someone who is currently going throught it. Thanksss

[Kint111]

I just got diagnosed last week & I'm only 13, it kinda scares me that I have this, & I don't know what to expect in the future, I just need help, I need someone to talk
to that got this when they were younger or someone who is currently going throught it. Thanksss

Oh Pay, I'm so sorry to heard about your diagnoses. I was like you at first, (I'm sure many will feel the same here too) there isn't much you can do now but to read/ educate yourself as much as you can and seek the advice from the loving ppl here for help.

Please don't be afraid and hang in there. hugs2

P.S. Start a new post so more people can read and help you.

Best wishes!
Kin

[Andros]

I just got diagnosed last week & I'm only 13, it kinda scares me that I have this, & I don't know what to expect in the future, I just need help, I need someone to talk
to that got this when they were younger or someone who is currently going throught it. Thanksss

Payton; welcome! What have you been diagnosed as having? What are your symptoms? How is the doctor treating you?

[Kint111]

This is weird.....

Here is a quick update: (I'm going into underactive thyroid Hypothyroidism)

My latest test result: (Month = Result)

TSH Sensitive **normal range 0.465-4.68 ** (Oct = .015) (Nov =7.348)

Free T4 **normal range 0.8-2.2 ** (Oct = 1.1) (Nov = 0.7)

Free T3 **normal range 2.8-5.2** (Oct = 3.6) (Nov = 2.8)

No wonder lately I feel tired and not to mention gaining some weight so quickly.

Called the doc. and waiting on a reply back from him. I had ask him if it was ok to take 5mg Methimazole a day instead of 15mg.

Will keep your updated soon as I hear back from my doc.

Thanks,
Kin

[AZgirl]

I couldnt be more happier to hear that you stuck it out with meth. I am deadly scared of the RAI and my doc pushes it as well! I was put on 40 mgs a day, and i am about 120 lbs. after reading all these messages, i think that is way high. I dont quite quite understand reading the results just yet, i will have to ask doc for my t3 and t4 results. but i am only 120 lbs. I swear she overdoses me to have an allergy!
And of course, i did. She again pushing for RAI, and i again refusing. I desided upon myself, to cut the dose in half (20mgs) with half benedryl. that was 3 weeks ago. As of today, i added a half pill more now and not benedryl, (my thinking is i am forcing my body to accept meth) well, i go for bloodwork end of Nov. However,I feel awesome. I used to be very athletic, cycle 30 miles daily, and i used to bodybuild. I didnt loose weight, cuz i think i had no body f at. however, i went from that to sleeping on the couch all day, till evening. of course all the usual symtoms as well. But i have been up and doing my usual for the last month. so cross your fingers for me, that my own medical searching is working, and not advised from doc. Bottom line, i am so glad to see it is now working for you.

[Kint111]

AZgirl,

You and I are on the same boat here. I too was active before all this started! Although not as fit as you but I ran miles, weight training and was on P90X.

So were you developing rash/ hives from the Methimzole? I have rash too when I was on 30mg a day but the rash are more tolerable when the Endo lower my dosage to 15mg a day. I still get rash but my Endo is fine with me taking Zrytec maybe once a week.

If you read my last post. From my last test result I think I'm going from having overactive to underactive thyroid "Hypothyroidism".

But yeah, I'm going to stick this out with medication long as I can.

So we'll see, but good luck to you (and to myself) and please keep us updated tho.

Lastly, you should run it by your Endo/ Doc that you lower your dosage. Just in case something happens.

Best of luck!
Kin

[Kint111]

Quick update:

Endo/ Doc is ok with me going with 5mg a day. Going to take 5mg a day for about a month follow with a blood test then a phone visit afterward.

Thanks,
Kin

[greatdanes]

Looks like you may be on your way to remission hugs4. It takes most people 12-18 months to reach remission, then again, sometime it's due to overmedicating. Hopefully you won't continue to go further hypo, but it is a possibility. I stopped taking 5 mg without doctors orders (no i don't suggest this) when i felt myself going hypo, and I was only on it 3 weeks. I can attest that methimazole is and can be potent in even small doses.

[Kint111]

Looks like you may be on your way to remission hugs4. It takes most people 12-18 months to reach remission, then again, sometime it's due to overmedicating. Hopefully you won't continue to go further hypo, but it is a possibility. I stopped taking 5 mg without doctors orders (no i don't suggest this) when i felt myself going hypo, and I was only on it 3 weeks. I can attest that methimazole is and can be potent in even small doses.

Greatdanes,

Thanks for your kindness and support. Is good to hear (not good but for support.) that someone out there is in the same situation as I'm in.

Guess we'll wait in a month to see what is 5mg is going to do in my body and hopefully I will too will go into remission and not further down to being hypo.

I should read more about this tho.

Thanks for sharing.

Kin

[AZgirl]

Wow, Kin i wish you luck! Im hoping for that kind of results. I personally cant believe i cant wait to get blood work done! Im excited to think maybe im doing better! However, i shouldnt probably get my hopes up. Also, Kin, I do still get a little rash, but not that DEEP itch that just wont go away.

[Kint111]

Wow, Kin i wish you luck! Im hoping for that kind of results. I personally cant believe i cant wait to get blood work done! Im excited to think maybe im doing better! However, i shouldnt probably get my hopes up. Also, Kin, I do still get a little rash, but not that DEEP itch that just wont go away.

AZgirl,

Thanks!! And I wish you luck also! Please keep us updated on your future status.

That's the spirit, keep you chin up and don't give up!!

Have a Happy Thanksgiving!!

Kin

[Kint111]

**Update**

Now I'm confused :confused0006:about latest test result.

My latest result came back and my FT 3 and FT 4 came back within the normal. But my TSH level keep going up from 7.348 (11/16/10) to 12.224 (01//05/11) ((standard 0.465-4.68))

Since my last test, I have lower the dosage from 15mg to 5mg of methimazole. Does that mean I'm on too low of dosage methimzole?

Please let me know what you all think about my latest test result.

I just wanted to add, I feel much better now and not much had change but some weight gained.

Thanks,
Kin

[Andros]

**Update**

Now I'm confused :confused0006:about latest test result.

My ltest result came back and my FT 3 and FT 4 came back within the normal. But my TSH level keep going up from 7.348 (11/16/10) to 12.224 (01//05/11) ((standard 0.465-4.68))

Since my last test, I have lower the dosage from 15mg to 5mg of methimazole. Does that mean I'm on too low of dosage methimzole?

Please let me know what you all think about my latest test result.

I just wanted to add, I feel much better now and not much had change but some weight gained.

Thanks,
Kin

Hi there Kin!! Glad to hear you are a tad better. Who lowered your dose of Methimazole; you or your doctor?

Was this dose lowered before or after the January 2011 test? It looks like you are going very hypo. Sometimes the Frees do not get the "message" right away. They do take their time.

However, based on your TSH, I would think the doctor would cut your Methimazole.

[Kint111]

Hi Andros,

Post #34.

In Nov. I went from overactive to underactive thyroid Hypothyroidism with dosage of 15mg a day. And since then I lower the dosage to just 5mg. a day with the Endo approval. (Was that the right move?)

So the answer is the dosage was lower prior to this latest testing.

What does it mean "Frees do not get the "message" right away. They do take their time." Do you think they will go back down or up?

If my endo tells me to get off of methimazole does that mean my TSH level will come back down and I'm going to remission?

Thanks very much for the info and help,
Kin

[Andros]

Hi Andros,

Post #34.

In Nov. I went from overactive to underactive thyroid Hypothyroidism with dosage of 15mg a day. And since then I lower the dosage to just 5mg. a day with the Endo approval. (Was that the right move?)

So the answer is the dosage was lower prior to this latest testing.

What does it mean "Frees do not get the "message" right away. They do take their time." Do you they will go back down or up?

If my endo tells me to get off of methimazole does that mean my TSH level will come back down and I'm going to remission?

Thanks very much for the info and help,
Kin

If your TSH continues to rise (hypo state) the FT4 and FT3 should continue to go down.

Hmmmmmmmmmm! Are you eating soy products or other goitrogens? Are you taking L-Carnitine? That is a very low dose of Methimazole and it should not be pushing you over the top re the TSH like that.

And yes; that was the right move for now.

[Kint111]

Oh my goodness......not goitrogens or L-Carnitine but Soy? Could that be affecting my TSH?

I'm Asian, and most of the food I prep. uses soy sauce product. Could that be the reason? I cooked a lot and couple teaspoon soy sauce here and there make that much of a different?

I didn't know that, nobody told me anything about that. :sad0049:

Kin

[Andros]

Oh my goodness......not goitrogens or L-Carnitine but Soy? Could that be affecting my TSH?

I'm Asian, and most of the food I prep. uses soy sauce product. Could that be the reason? I cooked a lot and couple teaspoon soy sauce here and there make that much of a different?

I didn't know that, nobody told me anything about that. :sad0049:

Kin

Oh, Honey Bunny! It's the soy! OMG!!

http://www.ncbi.nlm.nih.gov/pubmed/16571087

http://www.mercola.com/article/soy/avoid_soy2.htm

Also, because soy is "estrogenic", you may be estrogen dominant and that is not good. Too much estrogen out of balance can lead to cancer as well. I do suggest you get estrogen test.

Keep me in the loop!!! I will help if I can.

[Kint111]

Thanks again Andros,

I have a phone visit with my endo tomorrow and we'll see what he have to say. But for now, I'll try to cut down on soy products (is tough, because they are all over!) and see.

I will keep you posted, thanks.

Kin

[Andros]

Thanks again Andros,

I have a phone visit with my endo tomorrow and we'll see what he have to say. But for now, I'll try to cut down on soy products (is tough, because they are all over!) and see.

I will keep you posted, thanks.

Kin

I agree; it is very very tough because there is soy in "everything" you can think of and trust me; I love asian cooking but no can do w/ all the soy.

What makes it even more difficult is if you are raised up on a certain diet which is your heritage. Very tough.

Let me know what you find out please!

[Kint111]

**Update**

My endo first suggested I stop methimazole altogether but I insist that we go to a lower dosage ATD instead of stopping all it once.

So now I will be on 2.5mg a day and do blood test in 4 weeks.

And Andros, I mentioned to him about Soy and for reasons he said it has nothing to do with it...... :confused0003: (Does he know something I don't?)

So we'll 4 weeks and see.

Thanks all!!
Kin

[Andros]

**Update**

My endo first suggested I stop methimazole altogether but I insist that we go to a lower dosage ATD instead of stopping all it once.

So now I will be on 2.5mg a day and do blood test in 4 weeks.

And Andros, I mentioned to him about Soy and for reasons he said it has nothing to do with it...... :confused0003: (Does he know something I don't?)

So we'll 4 weeks and see.

Thanks all!!
Kin

I do not believe your endo is well informed about such matters. That does not mean your endo does not care about you but this is important so "if" he researched this and started thinking outside the box, I would be impressed. What about you?

You read the information about soy. What do "you" think?

How are you feeling? Did your endo do labs this last visit?

[mum2bradley]

My Endo also told me that dairy products are ok, but don't they containe iodine??

I too was hyper and and now hypo so I stopped my meds for 48hrs.

[Andros]

My Endo also told me that dairy products are ok, but don't they containe iodine??

I too was hyper and and now hypo so I stopped my meds for 48hrs.

Hi there mum2bradley! Did your doctor tell you to stop your meds for 48 hours?

[mum2bradley]

of course he didn't....but I did. I took 5 mg yesterday and 5mg this morning, will take the other 5 mg tonight.
I am feeling pretty awful right now so I am taking a sick day.
Contemplating weither or not to go have my bloodwork done today. He might see that it has gone lower and suggest something??
Also contemplating talking to my family Dr about another specialist. It is just that he comes so highly recommended and all patient write ups that I can find online praise him for both diabetes and thyroid. Maybe I am just a tough case? Don't know.

[Andros]

of course he didn't....but I did. I took 5 mg yesterday and 5mg this morning, will take the other 5 mg tonight.
I am feeling pretty awful right now so I am taking a sick day.
Contemplating weither or not to go have my bloodwork done today. He might see that it has gone lower and suggest something??
Also contemplating talking to my family Dr about another specialist. It is just that he comes so highly recommended and all patient write ups that I can find online praise him for both diabetes and thyroid. Maybe I am just a tough case? Don't know.

Graves/Hyperthyroid is tough. I am sorry you are hitting such a rough patch. I think this is why so many of us just give up the ghost (thyroid) and move on with our lives.

Too much time wasted trying to get it right and then it does not stay right.

Please let us know how you are doing. And if you got labs.

Here's a group hug for ya'........

http://img.photobucket.com/albums/v129/LuLu1471/hug-3.jpg

[AZgirl]

wow, im glad i stumbled back into this site... i dont have current lab right this min, but after 3 months of methi. my free T3s and T4s are in normal range (at the lowest end though) and my TSH still lagging behind (but from here, i learned that this could happen) i go for appt in 2 weeks with updates. but, since last lab, i noticed im a bit more tired and gained 12 lbs! That drives me crazy, since i was training to be a fitness trainer just a mere 5-6 months ago! gym daily to NOTHING at all.. does anyone think since my labs last month were IN range but in the low end, i could be starting hypo? i promise i will post new ones in 2 weeks, but i kinda want a heads up when i go in... and lots of times, i hear people ask if they have eye problems,,,,,,,,my eyes dont protrude, at all, but my left one sometimes does feel like someone is pulling it out of socket! just typing that gags me! but not always, to relieve that pain, i just squeeze the corners of my eye, and it goes away,,, haha, which i could afford botox, and numb the area! haha

[AZgirl]

Silly question,,, what does MMI stand for in this whole thing?

[mum2bradley]

yes you can go from hyper to hypo, I was hyper, hypo last week and now back to very hyper.
MMI is tapazole or methimazole(sp?)

[Andros]

Silly question,,, what does MMI stand for in this whole thing?

It's not a silly question; I have no idea myself. I wish people did not use acronyms. Especially when it comes to medical stuff.

It is possible you are going hypo; only labs will tell.

Also, I would like to suggest that you see a Board Certified Ophthalmologist at your earliest convenience. Much can be done to stave off the ocular infiltration by the antibodies.

Bummer about your training and area of study. I am a total gym rat and there was a time when I could not walk up the stairs much less do the Stair Master.

You will be back in operation one day soon. Do you plan on RAI or surgery?

Let us know.

[AZgirl]

first id like to mention a typo on my part, i stated "which i can afford botox" that was meant to be WISH i could afford botox! anyway, Andros, wow! scared me a bit when i seen you suggested a Board Certified Ophthalmologist. i just thought since im not having any other symptoms, im ok??? at least that is what the doc told me. is there any labs i could request for ocular infiltration by the antibodies? I have major anxiety with eyes. I have never had the eye pressure test done (where they shoot that small amount of air into the eye) because i just cant seem to sit still long enough without giving them a hard time. I have even passed out before trying to get it done. Now, you can imagine the one time i had a contact stuck in my eye what a pleasure i was to the doc trying to get it out! Do you know what they do when you go to the eye doc to check for this issue? i would totally need to be fully prepared! and maybe medicated to say the least...you can scratch a chalkboard a million times before i can even comprehend anyone getting close to my eye. i know i have to be a big girl though (ha 43yrs old now) i am doing what i can to avoid both RAI and surgery. To be really honest, im just not sure of anything anymore. this tiredness just puts you in a stooper and quite frankly not really caring anymore about to much. I have tried to read up with books about both RAI and surgery, listen to boards, talked to doc.... and i cant quite explain it, but my mind just wonders off, i think because of the fear. i get nauseous. I dont understand why. Im not normally a "feel bad for me baby" type, but i just want someone to TELL me what to do, and not do it because they are a doc and they think RAI is the best and quickest thing. I have a friend that has graves, and she is one of those all natural homeopathic people and has had this for 15 years...its no cure, but she seems to be great, with some downs too, but under control...IDK i just dont know?

[Andros]

first id like to mention a typo on my part, i stated "which i can afford botox" that was meant to be WISH i could afford botox! anyway, Andros, wow! scared me a bit when i seen you suggested a Board Certified Ophthalmologist. i just thought since im not having any other symptoms, im ok??? at least that is what the doc told me. is there any labs i could request for ocular infiltration by the antibodies? I have major anxiety with eyes. I have never had the eye pressure test done (where they shoot that small amount of air into the eye) because i just cant seem to sit still long enough without giving them a hard time. I have even passed out before trying to get it done. Now, you can imagine the one time i had a contact stuck in my eye what a pleasure i was to the doc trying to get it out! Do you know what they do when you go to the eye doc to check for this issue? i would totally need to be fully prepared! and maybe medicated to say the least...you can scratch a chalkboard a million times before i can even comprehend anyone getting close to my eye. i know i have to be a big girl though (ha 43yrs old now) i am doing what i can to avoid both RAI and surgery. To be really honest, im just not sure of anything anymore. this tiredness just puts you in a stooper and quite frankly not really caring anymore about to much. I have tried to read up with books about both RAI and surgery, listen to boards, talked to doc.... and i cant quite explain it, but my mind just wonders off, i think because of the fear. i get nauseous. I dont understand why. Im not normally a "feel bad for me baby" type, but i just want someone to TELL me what to do, and not do it because they are a doc and they think RAI is the best and quickest thing. I have a friend that has graves, and she is one of those all natural homeopathic people and has had this for 15 years...its no cure, but she seems to be great, with some downs too, but under control...IDK i just dont know?

The "defining" factors (criteria) for Graves are:

Exophthalmos, goiter, pretibial myxedema and thyrotoxicosis. The patient must present w/at least 3 out of the above 4. Does your friend qualify?

This is a very very interesting article. It would seem that TSHR, thyroid stimulating hormone receptor antibodies are the culprit.
http://discoverysedge.mayo.edu/de08-4-endo-bahn/

I believe the lab test would be called Trab.

And there is much more at play here if you are interested.
http://endo.endojournals.org/cgi/content/full/147/1/9

Believe me; I know your fear. I cannot stand to have anything near my eyes.

Sooner or later, you will decide what is the best course for you. Meanwhile, we are here for you if needed.

[Kint111]

I do not believe your endo is well informed about such matters. That does not mean your endo does not care about you but this is important so "if" he researched this and started thinking outside the box, I would be impressed. What about you?

You read the information about soy. What do "you" think?

How are you feeling? Did your endo do labs this last visit?

Glad, I checked back. I didn't know there were responses.

Yes, I've been doing some research on soy. For the past weekk, I have minimize (the best I can) soy and idolize intake and watching what I'm putting into my mouth.

The last lab result was the only one I did. My next lab test will be in 4 weeks (2.5mg methimazole) then follow another phone visit by my endo. We'll work from there. We'll see where my TSH level will be at then.

Honestly, I feel just fine. Just some weight gained and nothing else.

Thanks,
Kin

[Andros]

Glad, I checked back. I didn't know there were responses.

Yes, I've been doing some research on soy. For the past weekk, I have minimize (the best I can) soy and idolize intake and watching what I'm putting into my mouth.

The last lab result was the only one I did. My next lab test will be in 4 weeks (2.5mg methimazole) then follow another phone visit by my endo. We'll work from there. We'll see where my TSH level will be at then.

Honestly, I feel just fine. Just some weight gained and nothing else.

Thanks,
Kin

Hi there, Kin! So glad to hear from you and also glad you feel fine. Good for you!

Will be anxious to hear from you when you get your labs.

Stay on track!

[Kint111]

Hi Andros,

Quick update:

**02/07/11 UPDATE**

It seem that my TSH took a drastic turn back down to the normal range.

FT3 ( nor. 2.8-5.2)
(08/24/10) 11.4
(01/05/11) 3.1
**(02/07/11) 3.6**

FT4 (nor. .8-2.2)
(08/24/10) 3.5
(01/05/11) 1.1
**(02/07/11) 1.3**

TSH (nor. .465-4.68)
(08/24/10) .016
(01/05/11) 12.224
**(02/07/11) 4.116**

Not much more to add, but I feel much better now on 2.5mg. of Methimazole. So my next test will be in 7 week.

Thanks,
Kin

[Andros]

Hi Andros,

Quick update:

**02/07/11 UPDATE**

It seem that my TSH took a drastic turn back down to the normal range.

FT3 ( nor. 2.8-5.2)
(08/24/10) 11.4
(01/05/11) 3.1
**(02/07/11) 3.6**

FT4 (nor. .8-2.2)
(08/24/10) 3.5
(01/05/11) 1.1
**(02/07/11) 1.3**

TSH (nor. .465-4.68)
(08/24/10) .016
(01/05/11) 12.224
**(02/07/11) 4.116**

Not much more to add, but I feel much better now on 2.5mg. of Methimazole. So my next test will be in 7 week.

Thanks,
Kin

Hi Kin; so good to hear from you and yes, I would say that is a drastic turn. Glad to hear you are feeling much better now. Glad to hear you are staying on track w/ 2.5 mg. of Methimazole.

Please keep us informed and remember, "We are here for you!"

http://img.photobucket.com/albums/v129/LuLu1471/hug-3.jpg

[Kint111]

Thank you very, very much for the support, Andros! (I really needed that!)

Also, does this make any different what we talked about last about Soy things?

[Andros]

Thank you very, very much for the support, Andros! (I really needed that!)

Also, does this make any different what we talked about last about Soy things?

It depends. Are you still on your "usual" diet which is high in soy? If so, that is probably why such a low dose of Methimazole is doing the trick.

[Kint111]

It depends. Are you still on your "usual" diet which is high in soy? If so, that is probably why such a low dose of Methimazole is doing the trick.

Yes and no, as for cooking for myself, I did cut down my soy assumption but is totally impossible to cut all soy out because it is everywhere (even in ice cream !)

In the mean time, I will continue to be on my diet and wait 7 weeks for my next blood work test.

Thanks,
Kin

[Andros]

Yes and no, as for cooking for myself, I did cut down my soy assumption but is totally impossible to cut all soy out because it is everywhere (even in ice cream !)

In the mean time, I will continue to be on my diet and wait 7 weeks for my next blood work test.

Thanks,
Kin

Kin; I think that is a very good plan. Is it not amazing the products that one finds soy in?

You have been reading labels!! Good for you!

[Kint111]

Hi Andros and All,

I have some good news/ update to share and need some advice.

My latest blood test result came back showing everything is back within range (remission?) and has been stabilize.

T3 Free= 4.0 (Nor. 2.8-5.2)
T4 Free= 1.4 (Nor. 0.8-2.2)
TSH =3.586 (Nor. 0.3-5.0)

It is sure a good news for me but now I need to face another decision. And which is what am I going to do now? I will be speaking to my Endo this coming Monday and I wanted to have some sort of plan in what to do next.

Here is my three options and please let me know what you think.

1) Stop taking methimazole and in a few months re-check blood work. (presumably go from there)

2) Continue with the same dosage of 2.5mg of methimazole for a year or so before reducing the dosage to 1.25 mg then eventually stop altogether.

3) Lower my dosage to 1.25 mg, wait a few months and re-check blood work.

That's all I could think of right and again please let me know what you all think.

Thanks,
Kin

[Andros]

Hi Andros and All,

I have some good news/ update to share and need some advice.

My latest blood test result came back showing everything is back within range (remission?) and has been stabilize.

T3 Free= 4.0 (Nor. 2.8-5.2)
T4 Free= 1.4 (Nor. 0.8-2.2)
TSH =3.586 (Nor. 0.3-5.0)

It is sure a good news for me but now I need to face another decision. And which is what am I going to do now? I will be speaking to my Endo this coming Monday and I wanted to have some sort of plan in what to do next.

Here is my three options and please let me know what you think.

1) Stop taking methimazole and in a few months re-check blood work. (presumably go from there)

2) Continue with the same dosage of 2.5mg of methimazole for a year or so before reducing the dosage to 1.25 mg then eventually stop altogether.

3) Lower my dosage to 1.25 mg, wait a few months and re-check blood work.

That's all I could think of right and again please let me know what you all think.

Thanks,
Kin

Do you feel a lot better right now? That would be the criteria I would use. If yes, realize that the current dose is what got you there and opt for option 2.

If the answer is no, I would still opt for #2 and get labs in a timely fashion to see what happens to the numbers.

Has this helped? What do you think?

[Kint111]

Do you feel a lot better right now? That would be the criteria I would use. If yes, realize that the current dose is what got you there and opt for option 2.

If the answer is no, I would still opt for #2 and get labs in a timely fashion to see what happens to the numbers.

Has this helped? What do you think?

Thanks Andros,

Right now, I feel fine but not 100% perfect (I don't know due to lack of sleep this couple of days) but I do feel much better than before that's for sure.

I'm agreed with you going with option #2, I think I'm going to talk to my Endo about continue on 2.5mg of methimazole and recheck in 4 months. If everything is fine, then we can go for another 6 months and from there on hoping I can lower the dosage to 1.25mg.

Do you think is necessary for me to ask my endo to run more test? Such as Antibodies, TSI or TRAb?

Yes, the info you provide was very helpful to me. I can't say enough but Thank-you very much for the help and advice you had giving me.

Kin