Forum Replies Created
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Hello Suzzanne,
I agree with Shirley about your labs. As for your symptoms, you said that you have been on Methimazole since October. Could it be that you have reached a hypo state? I would really want to look at my labs if I were you. I have been on Methimazole since mid June and a couple of days ago when I received my lab results I noticed that my fT4 is now in the hypo range. I have been feeling tired and I’m thinking it is because of that. If the nurse told you to call your regular Dr., you should do so. Maybe your regular Dr can get to the bottom of things even if it is Methimazole/GD related. Once again, keeping up with labs and understanding where we are as far as our #s is very important b/c you can compare your #s with the normal range and with your symptoms. An informed patient is a plus with a disease that is with us for the rest of our lives. Please keep us posted. Hope you find an answer soon.
Smiles,
Caro
P.S. Welcome to the forum.
Hello Darcy and Kimberly,
It is pretty clear that changes have taken place and I’m glad for them
On one hand I’m happy for the changes and on the other one I’m scared about currently being on a high Rx dose and the fT4 being already outside normal and in the hypo side of things. Thank you both for your inputs.Darcy, I’m with you. I think I’ll see a change in dose pretty soon.
Kimberly, I did call my Dr. I left a message later on after typing my first message. I couldn’t help waiting on them to initiate contact. It was still before noon but I still haven’t heard anything. My appt is for Tuesday but I might try the Endo again on Mond if I don’t hear back from them today. It is 5:30p here but sometimes they call later in the afternoon. So I’m hoping they might call before the day is over. Great idea about the primary Dr. I’ll wait and see what happens. Thank you about the info regarding the 1/2 life … I think I remember it being 6-7 hrs.
My only symptom is still the one of feeling tired, not exhausted, just tired and at times very tired. I left this as a message for the Dr. I run out of energy before the afternoon is over. I took a nap earlier and it helped. I haven’t been as hot today
but I’m still feeling hot at times but I also feel cold at times (less than hot). I like this b/c it helps me sleep better and the nap I took today was so so comfortable. I think I have gained a pound or 2. Besides that I think I’m fine thank God. Thank you both for your responses. It helps to get the support
I’ll keep you posted.
Caro
Kimberly wrote:Hello – Yes, the remission stats I’ve seen out of the U.S. after 12-18 months of therapy are around 20-30%. I’ve only seen one published study that showed higher rates than 50-60%, and that was a study out of Japan involving “block and replace” protocol, and to my knowledge, the success of this study has never been replicated.It is almost like we would have to be on it for 10 years to achieve a 90-100% (if there is ever a 100% probability).
What exactly is “block and replace”??
Thank you for your input.
Caro
karebear wrote:Caro, I have been on 30mg Methimazole for a week and a half. I don’t do labs until September. My endo said that I will be on it about a year and then I will ween off of it. Hopefully go into remission as several of her patients have done. If not we will discuss the next step then. My husband was worried about the liver issue and she said to watch for a yellowing of the skin and eyes. That shows the liver is not working right. Like a newborn and jaundice.
Just wanted you to know you are not the ONLY person taking a high dose.
KarenHello Karen,
Welcome to the forum. I’m glad you found us. I wish you all the best with the Methimazole. I’m glad that your Dr. is wanting to try it out for a year. I would recommend making sure, if all goes well with the Methimazole, that you are in remission (I’m still trying to learn what remission entitles) before discontinuing it. I’ve read that stopping it when your TSI #s are still elevated can send you back into a hyperthyroid state again. Your Dr will be doing labs for the liver and white blood cell count I’m sure. Mine is and up to now, my liver #s have not increased. They are high but not more than 3 times the normal so my Dr keeps me on the Methimazole. I just got my labs back. Take a look at them when you get a chance. Thank you for letting me know you too are taking a high dose. It can get scary. I think they will lower mine soon though. Keep us posted and thank you for the advice
Smiles,
CaroHello 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,
CaroHello again VanlsleGal,
I was so surprised when my 1st Endo (I’m seeing another Endo now) wrote in all of my papers (on his notes) that I had HYPOthyroidsm. You can imagine my reaction when I read the papers. Hadn’t we just spent about an hour talking about my HYPERthyroid?! It can happen I guess. You might want to double check things. I left my 1st Endo (for many reasons) and I’m now seeing a 2nd Endo who so far has helped me with my hyperthyroidism.
Natural doctors can be helpful on some things and I’m sure she has helped many people. Just make sure she can be helpful to you. Hyperthyroidism is such a complicated thing and as a GD patient you don’t need anything that can make things worst. My grandfather was a natural Dr. He helped many people too but I don’t think he was equipped to handle what I’m going through right now. He was a good man, who lived to be very old following his own advice and medicine.
My husband and I have a friend who is seeing a natural Dr. He has hypothyroidism and the natural Dr. is helping him and he is feeling better. He has a thyroid but his #s are a little bit low. Our friend is also seeing a general Dr who monitors his #s and prescribes his medication.
My advice, therefore, is make sure you run everything by your general Dr to make sure that nothing contradicts your current treatment.
Please do keep us posted
Caro
Hello … its me again
CONGRATULATIONS on that TSH coming back. Baby steps, baby steps.
Debbie, are you on a “block and replace” kind of thing? With your T4 being low and your T3 being up? You mentioned thyroxine and Neo-Mercazole.
I’m so glad your making good progress with the beta blockers. One less pill to worry about.
I’m still taking the Methimazole 30mg/day and Metoprolol 50mg/day. I had labs today and hopefully I get my results tomorrow. I see my Endo next week. I’m so looking forward to seeing where I Am.
How long ago where you diagnosed? How long ago did you start treatment for the thyroid?
I’m sorry to hear about your eyes. I’m so glad you got your appointment with the Opthalmologist. That is one thing I need to do. My eyes are fine but at times I think they look swollen. Specially in the AM. I’ve always had allergies and the allergies affect my eyes … or so I have always thought … it could be the GD. I wish you the very best with your appointment. Please keep us posted.
You too stay strong and well …
Smiles,
Caro Hello Debbie,
It is good to read you!
It sounds like we need to swap places for a little while. It is super hot here and on top of that I’m feeling extremely hot even in the cold air conditioner. I wonder if our sensitivities come from what is going on with the weather. It is winter there and you are freezing and it is summer here and I’m burning up. I stick my head in the freezer at times. My husband will be walking around with a fleece blanket on and I’ll be in my shorts and tank top. At night I’ll be off the covers and he’ll have 2 blankets on plus the fleece blanket. I feel sorry for him but I’m burning up
I think … he can keep adding blankets but I can’t keep taking stuff off 
I’m the happiest at the grocery store in the frozen section. At work they keep it very cold … thank God!!!!!! At the house when I start to feel really hot sometimes I just lay on the cold floor to cool down. There is just so much I can lower the air conditioner, right? Sometimes at night I even sleep with an ice pack. It has gotten that crazy. I do have to say though that last night I actually felt a little bit cold. I was so excited about it. I so want the winter to get here. It doesn’t snow here but we do have to use the heater. Thinking it thoroughly, maybe the summer is better b/c I can just turn the air conditioner, something that I will not be able to do in the winter when everyone wants to feel warmer.Did your Endo tell you why heat/cold intolerances were not a really good indication?
I hope you feel warmer soon. Send me a little bit of winter, will you?
Smiles,
CaroWelcome to the forum.
I was just diagnosed in June so I’m taking Methimazole at the moment. Therefore, I don’t have much to add but I do wish you the very best wit your surgery. Please keep us posted as to how all turns out.
Caro
Hello Vanlslegirl,
Very interesting post. Regarding the following comment:
VanIsleGal wrote:She also told me to slap my thyroid on both sides in the morning to remind my body to ‘heal’ my thyroid ie. to regulate my thyroid. She has treated 4 people with Grave’s.I agree with Kimberly and Shirley about being careful with manipulating the thyroid. I read some where (don’t remember where) that placing ice/hot compresses on it will make the thyroid work harder. Something that someone who is hyper does not need and something that could also be very dangerous.
Did the natural Dr tell you how the other Graves patients are doing?
I love flax. I eat it almost every day
Caro
Hello MK,
I had a TPOab done last year right before we started the treatments to get pregnant. My TPOab was elevated but my thyroid # (TSH only … the Dr. did not do the others) was normal. All the Dr told me then was that it could be that in the future I could develop thyroid problems and to have my thyroid checked periodically.
In Feb my OB/GYN asked for TSH labs and again the TSH was normal. In June my TSH was almost not there and I was told I had GD. It all happened so fast. I can’t tell if the TPOab got better or worst by June because the normal ranges were different. The TPOab was again elevated though.
Since you are interested in the immune part of things, I’ll share a story with you. My ANA (Antinuclear Antibody) was + for a while about 8 years ago. I was told I probably had Lupus. After seeing 2 Rheumatologist, it was confirmed that I did not. I saw an Immunologist (he passed away 2 yrs ago) who told me that I was allergic to yeast. He treated me for yeast with shots treatment. Before he started the treatment he checked my ANA once more. After being on the treatment for a while my ANA was negative.
I do believe the immune system can heal. Maybe the TPOab can also slow down like my ANA did and like you were told could happen. I’m very interested in the immunology part of GD because of my past experience with a positive ANA.
As to what TPOab represents as far as cancer goes, I don’t really know but you are asking good questions. Hopefully one day the immune system part of it all will be more understood. Any answers you find please share them with us.
Caro
Hello gatorgirly,
Thank you for sharing your experience. I have felt like you described. Not now, but in the past. Very heavy periods and extremely exhausted. I remember sleeping one whole day once like if I was in a coma. It was scary. I have always needed 10 hours of sleep a night to feel good the next day. When I became hypER I too felt like you describe. Mainly b/c as you said, my body was going a 1000 miles an hour. Now I just feel tired, like I can take a 2 hour nap in the afternoons. I get busy in the day and my energy doesn’t last into the afternoon.
I got my labs done today so hopefully I get my results tomorrow.
You are so right about sleep pollution. Fortunately, my bedroom is sleep pollution free. When we moved to our house my husband and I decided to make it so. Blinds and double curtains, no electronic devices expect for alarm, cold temp (this of course doesn’t seem to be helping me though … my husband will be freezing to death and I’ll be extremely hot), nice clean sheets, tempupedic mattress and pillows, dimming of lights through out the house before bed time, nice bath, nice book, …. I have never had problems with my sleep until now with the nightmares that wake me up abruptly and feeling sad. The worst part is that I don’t even remember them. I just know I’ve had one b/c of how I’m feeling when I wake up. One night I even woke up crying. I need to tell my Endo about this next week.
We do tend to think everything that happens to us is GD related, don’t we? Even our Drs. do this at times. I too I’m guilty of “olympics watching” late at night 😎 I think I need to start going to bed a little bit early and taking power naps in the afternoon. Maybe that will help ….
Thank you for your response. It helps to know that I’m not alone in all this. Hope you come out of hypO soon
Hello Kimberly … thank you. It sure helps. Knowing that it can happen even when we are in the normal range is good to know.
We’ll see what my labs say tomorrow 
Caro
Hello Mickiko.
Good questions. Wish I knew. My Drs have only asked for TSI and TPOab testing.
The TSI was done twice. Each time the normal range was different, so I don’t know if things got better or worst in b/w labs.
TSI
ER:
Results: 4.5 (normal range < EQ 1.3) 1 week later @ Dr.’s:
Results: 237 (normal range 0-139%)I haven’t had an iodine scan but I was told I have GD based on the TSI #.
I’m also very interested in the immunogology part of GD. Please let us know if you find out anything about your question. I’m curious to read your findings.
Caro
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
Welcome to the forum. I’m glad you found us.
I was diagnosed in early June and started Methimazole a week later. I’ve been on it for 7 weeks. I just wanted to share with you that the medication takes some time to seem like it is working. At least it did for me. I started to feel like something was finally happening around week 3 of taking it. So, hang in there.
As for the heart, I’m so sorry you can’t take a beta blocker. One of the things I hate to the 1000 power about GD is the tachycardia. I was so glad when it went away with the beta blocker. I personally feel that Metoprolol is better for me than Propranolol. My Dr. said that it would make me feel less out of breath. Metoprolol is a cardioselective beta blocker. It specifically targets beta receptors in the cardiovascular system. You should ask your Dr. about it.
Something very important that has helped me is the increase of protein intake. When we are hyper we loose weight and with that we can also loose muscle, so protein helps rebuild tissue loss. When I was at my worst, I was eating 3 protein bars plus my 3 meals a day.
I agree with Kimberly about asking for a lab slip. I’m doing that as well. As a matter of fact, I had labs today in preparation for my 8th week appt that is coming up next week.
Wish you all the best. Please keep us posted. Feel better soon.
Caro
