[Darcy43 August 9, 2012 at 8:17 am Post count: 125]

#1059270

I know it is a formality but it had me a little worried.

I will eat lunch in my office so I do not miss “The Call”

I have to pee, but I shall not be moved.

I will post as soon as I hear. This will determine what I will have to decide RAI or TT…or more methi, but she really doesn’t want me to take anymore and I don’t either…my sides hurt all the time, and I have other problems with it, but she says it is the best ATD for me for now, but not for long…

We shall see….I will post as soon as I hear.

Crossing fingers, toes, legs, and eyes…

[snelsen August 9, 2012 at 8:46 am Post count: 1909]

#1173751

I’ll need to go back to read your other posts. Not sure why you need this info to decide. SO SORRY that happened. Can you look up results online, probably not, or you would have done so. Since you are at work, can you tell a coworker to answer the phone, say you are on your way back to your desk, so not to loose the call when you pee???
Look forward to your next post.

[KimberlyOnline Facilitator August 9, 2012 at 10:15 am Post count: 4294]

#1173752

Wow, so sorry you are going through this! Another option might be to call the doc’s office and give them permission to leave a voice mail message with the results, just in case you miss the call.

[Darcy43 August 9, 2012 at 11:35 am Post count: 125]

#1173753

OK I kept calling and DEMANDED to get results. Here they are

TSH back to 0.01 (saying curse words) in May it was 0.03
T4 is 1.86 (still good)
T3 (finally they checked it) is 161 – good also

Of course she wants me to now UP my methimazole. I was on 5 mg every other day, now she wants me to take 10mg every day and then retest in 6 weeks…

Dayum…I cannot stand taking that stuff. Welcome back hair falling out, weight gain, etc. I will follow doctor’s order but I really thought I was going to be weaned off of it.

I think she is pushing RAI who knows… if the T3 is normal and the T4 is also, that has to be good news right? I despise it when they measure the TSH as a defining factor for yours meds. We know it jumps around….uggghhhh. Thoughts?

[KimberlyOnline Facilitator August 9, 2012 at 12:04 pm Post count: 4294]

#1173754

Hello – I don’t know what the normal ranges are for your lab, but I would certainly ask more questions as to why the doctor’s recommendation is to quadruple the dose of ATDs if T3/T4 are normal.

I don’t know if you spoke directly to your doc or to one of the office staff, but we’ve had cases here of dosage recommendations not being conveyed properly over the phone.

The latest guidance from the American Association of Clinical Endocrinologists and American Thyroid Association notes that TSH is not a good benchmark for dosing early in the treatment process. You can find the guidance in full in the “Treatment Options” thread in the “announcements” section of the forum.

It might be helpful to share this with your doctor if you believe that this dosing recommendation was based solely on TSH.

Take care!

[Darcy43 August 9, 2012 at 12:31 pm Post count: 125]

#1173749

Thanks Kimberly I totally agree.

In fact, based on what my endo said was my “normal range” I was almost in remission or euthryoid (sp?). I have no idea what caused the TSH to drop .02 pts but again my T3/T4 are great according to what my normal range should be and she told me this.

I, too thought 10 mg daily was a bit much and last time when she up the dosage I went almost HypO and then it was like whoa…..come down, adn the side affects were AWFUL, etc….I will call her but what I think I am also going to do, (and I don’t recommend anyone to do this), but I am going to take 1/2 of what she recomended. I want to see how I feel first. Methimazole is suppose to stop the over production of the thyroid hormones. And I know for a fact that my T4 came way down based on my taking the Methi, PLUS talking Selenium, Lemonbalm (which helps with hypER symptoms and is a great stress reducer – but I check with her first and she wasn’t opposed to me taking it – she didn’t like it, but she liked my numbers and they looked much better T4 from 7.77 to 1.86) and I will continue to take my vitamines (A-E), magnesium, calcium and biotin for my hair, along with evening prim rose to decrease it from coming out (again). and I will pray.

It is really doing well and I don’t want to relaspe. I have 6 weeks before the next test before she tries to force RAI on me. I will see what happens. I even feel really good right now. If nothing changes for the worse and my T3 and T4 remains normal, I will not increase the Methi….it is not good for me and I told her this. I have bad side affects and I am tired of my side hurting and the God awful periods – I feel like I am hemorraging and she said this is a side affect that the Methi is “working”.

Praying and going to yoga tonight.

Oh and i am totally giving up coffee…I dropped down to 1/2 a cup and started drinking green tea…now I am completely done with it. I am trying everything including the medicine…..Namaste

[Darcy43 August 9, 2012 at 12:44 pm Post count: 125]

#1173755

And I am buying a skin brush…the stroking cannot hurt to keep me calm and release toxins..LOL…

I should brush my brain….I wanna say so many toxic words right now…..LOL

[adenure August 9, 2012 at 1:35 pm Post count: 491]

#1173756

Darcy,

I know you don’t feel like laughing, but your “I shall not be moved” if I have to pee was too funny! 😆 And the skin brush, didn’t know they made those! I think I need one too!!! I don’t know girl, but I wouldn’t be too excited about increasing methimazole to 10 mg either if my T4 & T3 were normal and I was feeling fine. Are you able to get a hold of your endo & talk directly? Does she have email? Are you still considering TT as well as RAI? I hope it all works out for the best for you- you deserve it! Hang in there!

Alexis

I’d write more, but I’ve got to get back to teaching my boys- have a good one!

[Carito71 August 9, 2012 at 1:53 pm Post count: 333]

#1173757

Hello.

Your post made my day 😎 So typical of what we are going through with GD. Numbers normal, increase in dose. What?! I had to laugh a little about the brushing of the brain …. lol!!!!!

It seems like you are doing several things to keep your mind and body healthy … & when I say mind I don’t mean the brain brushing, lol … I mean yoga. Good for you!!! I noticed that making sure I have a good protein intake helps also with my hair. I’m still hyper … I think … will find out tomorrow (had labs today) and the protein has helped a lot.

As for the Methimazole, I would LOVE to be at 10mg. Like I said, I’m hyper and my Endo has me taking 30mg. It seems, and this is just my personal opinion, that since your T4 and T3 were normal, that your Dr. might be thinking you will start going hyper since the TSH is lower than it was (???).

Did you talk to the nurse when you called? I think I would ask why the Dr. has decided to increase the dose. What is the rationale? If you find out, please let us know. I’m curious.

I’m glad you are feeling well and that your #s are looking good. Wish you the best with the new dose.

Keep us posted. Thanks for the laugh.

Caro

[Darcy43 August 10, 2012 at 6:41 am Post count: 125]

#1173758

Alexis you are so right. I did call back and speak with my endo directly and she regurtigated the same thing. I seriously think she is trying to strong arm me into RAI. It is the path of least resistance, but I just feel like she is rushing treatment. It hasn’t been 18 months yet. I know I have great insurance but goodness. But yes, according to my numbers it appears that I am getting better and I am starting to feel better. Seriously and I know this is only temporary… Believe me I would know hypeR symptoms if they started to come back, the Graves Rage, screaming, excessive sweating, shaking, tingling in fingers and even my legs would give out and I would just fall down…crazy. I haven’t has muscle cramps, my hair is not coming out any more and I am starting to feel …dare I whisper it…NORMAL/balanced and actually hopeful…wowzer. When I was on such a high dosage because it was necessary at the time it was pure hell…there has to be another solution, there always is. In six weeks I get more test so I will look at the numbers then and see. Yes the brushing is really good LOL seriously. My accuputurist used to use it on me and they sell them in Bed, bath and Beyond. It really does work, but I stopped using it when I moved back up north. when you put yourself last…you get GD LOL….

Caro, I am so sorry you are at 30mg and in the beginning I was at that dosage also. If you are still considered extremely hypeR you must be having an awful lot of symptoms so they are trying to find your sweet spot to control them. Good luck with your labs. I really hope you get better numbers this time around. I am sure your doc is doing everything possible to help. Yes it is a blessing to be on a lower dosage but I would love it even more not to have to take it at all…I know we can take it long term with decent results and success but it just doesn’t work well with my body and my endo knows this. She is on this “well we are getting close to the 18 month mark…let’s fish or cut bait” syndrome. I want conservative care, I take risks but this ish is kray kray and I still have to work my job. I am doing as much as I can to preserve my health even though it is hard. The yoga helps a ton with the mind and spirit because I had to stop running and that was just torture. I really do not lift weights yet, not strong enough, but I also walk and jump on the mini trampoline also. And I cannot stress the importance if vitamines and minerals (the right one that do not interfere with your meds). Yes I take a lot of protien (I practically live off chicken and fish, no red meat and no soy) and I eat a ton of veggies. I should look like a supermodel but the weight isn’t falling off..oh well…that is the least of my worries I guess. Hang in there.

I am trying to live with this stuff…but I am not giving up….

You guys are the best.

[Carito71 August 10, 2012 at 8:56 am Post count: 333]

#1173759

Hello Darcy,

I think I want to try out that brush. Well, I just got my labs back. Please check them out when you get a chance. It seems that I will not be on the 30mg for long. How long were you at that dose? I’m on the waiting for “the call” game right now. I hate waiting. I want to get on the phone and call them.

I’m sorry your doctor is getting the “well we are getting close to the 18 month mark…let’s fish or cut bait” syndrome. I hope mine doesn’t try that next Tues at my appt. I want to continue trying to achieve remission with the meds.

I too want to start doing something healthy for my mind/body when the Dr. gives me the okay to exercise. I was thinking about swimming. Mostly b/c I’m always super hot.

I’m allergic to wheat/gluten and yeast so I take a liquid vitamin called Organic Life Vitamins. I hope it is not one of the ones that interferes with treatment. Have you heard of them? I like them b/c I can control my dose. Too much vitamins make my hair fall out.

As for your weight, I hope it soon starts to normalize. I know that stress can cause weight gain as well so take it easy Make sure you get the sleep hours that your body needs to help with the weight. As for my weight, I lost 10 lbs in June b/c of my hyper thyroid. I have noticed that I have gained 2-3 pounds recently and does make sense after seeing my last set of labs. Continue your yoga … it is great. Go yoga!!! Just be careful with your back. There is a lot of back injuries due to yoga … or so I hear.

I’m glad you are taking your protein. I do too but I do eat meat. Why no meat? I also skip the soy now. Right before I went hyper I was drinking soy milk once a day (something that I had just picked up for “health benefits”). I eat meat once a week. Lots of veggies too. Maybe once your body starts to normalize all the good nutrition you take in now will help you look like a “model”

Thank you for your words of support.

Smiles,
Caro

[Darcy43 August 10, 2012 at 11:25 am Post count: 125]

#1173760

That sounds great Caro.

I will check out your labs. If they are lowering your dosage, that means you are possibly leaving the hypER stage which is a good sign. Some of yoru symptoms should have subsided also.

Swimming is EXCELLENT. It is light on the joints, and it is all over toning. I have a inside pool in my complex and I have gone only a few times but I need to do more of it. I must have typed too fast because I do eat meat, just not red meat. I read somewhere that it aggravates graves disease. Prior to reading that, I stayed away from it because some of the red meats are high in fat and it is very hard for me to digest. I also started breaking out in hives…Lamb doesn’t bother me (considered red meat) so I eat it, but sparingly.

They have so many gluten free products and on the market now (I think are do you have Celiac also?) so you have a lot of options.

Yes soy is a no-no for GD patients. It aggravates the symptoms and I think it interfers with the medication (one of the Facillatators can correct me if I am wrong). I used to drink protien shakes (EAS low carb) for life all the time until I was diagnosed. Unfortunately, the main ingredient is soy. Now I stick with a boiled egg or two, in the morning. It does the trick.

Stay focused and positive and yes I watch my Yoga poses. I am in the lower impact stages (Vinysse (sp?). It gets you centered and toned but I don’t have to be an acrobat to do it lol. I also do Pilates. Ballet on the floor and it is really good. Moving nice and slow.

I wish you much success with your endo treatment. Keep us posted. It is a rollercoaster but you can hang on tight and ride it out. That’s what I’m doing. I didn’t have a choice when I was diagnosed but I do have a choice if I am going to let it run my life. One day at a time…

Hugs

Darcy

[KimberlyOnline Facilitator August 10, 2012 at 1:08 pm Post count: 4294]

#1173761

Hello – My understanding is that soy is more of a concern for hypO than hypER, as it can potentially interfere with the absorption of replacement hormone.

@Darcy43 – I would really encourage you to seek out another opinion if you don’t have confidence in this doctor’s dosing recommendations, either from another endo or from your GP.

If you go off on your own in terms of dosing decisions, you can actually be dismissed from the practice for being “non-compliant” — even if it turns out that your labs look great at the 6-week mark.

[Darcy43 August 13, 2012 at 9:00 am Post count: 125]

#1173762

Kimberly I will definitely take that into consideration.

I guess with the soy it is controversial. I have read both – bad for hyper and hypo but I know you are much more well versed in research on this matter than I am so I trust you. I am still staying away from it however. Just a personal decision.

I do not want to be kicked out of the program, which is why I am doing everything to comply but it gets frustrating…

I am looking forward to the next set of labs…I do hope I see improvement, but yes I will keep taking my meds…begrudgingly…but I will keep up the treatment and keep yall posted.

Thanks again.

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