Forum Replies Created
-
Very interesting. I think I had heard something about it before. A friend of my husbands was told 2 weeks ago that he was hypo and was given T3 and T4 plus he was also told he was needing vit. D. Probably related??? This friend also has Celiac like me. Thank you for the information.
mickiko wrote:Caro – Thank you for sharing your story with me!! Yes, you are right. The main priority is your own health. It would be awful, if you took the risk and then it happened to you. So, I completely understand. It’s a scary thing. I need to read up a little more on what the exact statistics/risks are. I should probably talk to my OB about the risks and Bobbi’s suggestion of talking to a Pediatrician, as they may have seen the results of bad effects. But one of the reasons I don’t want to wait to long is because I already have a 2 year old at home. I don’t want a big gap b/t her and her potential sibling. My brother and I are 5 years apart and don’t have a great relationship with him. He sees me more like a 3rd parent rather than a sister.Caro, so does that mean you are not yet euthyroid on MMI? How long has it been? My doctor said the usual max is 18 months.
I agree with you, Caro. There is a reason these things happen. There is a reason we got diagnosed before getting pregnant in the first place.
Hello MK,
Talking to a Pediatrician sounds like a great idea. Please let me know what you find out. I understand about not wanting a big gap b/w your children. It is fun having a sibling that is close in age. To answer your question, I don’t know if I’m euthyroid. I’m hoping I’m or that I’m getting close to it. Last time my Endo did labs was about 3 wks ago and back then I was not. My next set of labs is next week so we’ll find out then. I’ve been on Methimazole for 6 weeks now and I’m on 30mg/day (kind of high). I’m so glad you have found us.
Caro
Kimberly wrote:However, ironically, that same guidance document recommends that patients in Europe have a 50-60% chance of remission after 5-6 years on the ATDs.This is very interesting. 50-60%? So 12-18 months could very likely be less. I wonder if longer than 6 years increases the %s. I’m thinking 50-60% is not much. It seems to be 10% per year on Rx … ???
Kimberly wrote:The doctors I’ve spoken to who are opposed to long-term use of ATDs believe that the more serious side effects can happen at any time and any dose, although they are *much* more likely at high doses and also early in the treatment process.That is the one thing I dislike about my situation, I’m at a high dose with 30mg/day.
Kimberly wrote:Every patient starts from a different level and responds differently to the meds. I started on a dose of 15/mg of methimazole per day, and the doc cut that in half when I went borderline hypO after just a few weeks. Your mileage may vary!I see, yours was 1/2 of mine and you started to slow down in a few weeks. I’m so hoping my #s are lower next time so that I can move down on the dose. It seems that a lot of people are started at a lower dose than mine
I wonder how they go about deciding what dosage to give. I wonder if it just depends on the Dr or are there certain signs/symptoms they are looking for besides TSH, fT3, fT4.Thank you for all your help. It helps reading other’s experiences. I’m glad things are working good for you. You are already into 5 years, I believe, so I hope pretty soon you enter remission.
Caro
Naisly wrote:My GP doesn’t know enough about graves or the medication. He said he can start me on the medication but cannot follow up with testing, diet, lifestyle changesThen, since he knows you have Graves and cannot help you maybe he can call the Endo’s office to see if the Endo can see you sooner. It is dangerous to be in a hyper state without medication. I’m glad you are at least taking a beta blocker. Kimberly and Alexis have given you a great idea about asking to be on a cancelation list or calling them often to see if anyone has cancelled and if you can take their place.
I hope things get better soon. It is terrible being hyper and even worst without treatment.
Please keep us posted.
Caro
Hello PolishTym,
So glad your friend got things settled. In Israel? They have good Drs. there. No, actually I haven’t but now that you mention it, I will. Thank you for the advice. My allergies are really bad too. I’m glad it helped you some. Thanks again.
Caro
Hello Mickiko,
Welcome to the forum. I’m glad you found us
I’m currently on Methimazole. I too was trying to conceive when I was diagnosed. Well, I was really taking a small break. I had been taking treatment Rx to conceive for 5 months when I started to feel physically and mentally tired. Before that I was feeling well and my labs showed it. In Dec. we decided to stop for a while to give us a break. I didn’t know why I was tired but attributed to the stress from trying to conceive and other things that were going on. In Feb., at my OB/GYNs I asked for labs, which came back normal, including my TSH. I continued to feel tired and in late May/early June, I developed tachycardia. A few days later I was at the ER after almost passing out. We all thought I was pregnant but the multiple pregnancy tests said otherwise. My TSH on the other hand was almost not there and my fT3 and fT4 were very high.
After reading and researching about GD some times I wonder if the hormones taken to aid conception only pushed me over the edge into GD. You can imagine that at first I was very frustrated and sad.
As for now, we have decided to get my health back in order before continuing with our plans to become parents. I’m scared to death to become pregnant right now b/c I have read that the Methimazole can affect the fetus. My main goal, therefore, is to get back to good health and stay like that for a while and then try become parents again. I don’t want to have two things going on at once you see and I would hate to get a brand new life involved in my health issues. My husband agrees and so as for now, I’m hoping that the Methimazole works but if it doesn’t, then I’ll have to decide b/w surgery or RAI. I lean towards surgery b/c the radiation scares me. Time will tell as to where I’ll go. I’m content with my choice though.
I know it can be very frustrating having to halt plans about a new baby but if this disease was put in our paths before becoming parents, then we’ll just have to learn to deal with it before we get to parenthood. Maybe it will make us better people. Maybe we’ll learn something about our body that is better to be known before a new baby arrives so that when a new baby arrives we can give him/her our best. I believe that blessings come in different manners and that maybe at first we don’t see it that way but later on we come to realize their true meaning.
I wish you the very best with your decision making. Please keep us posted. We’re here to be a support system and answer questions if we can.
Caro
Hello Naisly,
6 months is a long time to wait to see the Endo. Can your primary Dr. see if she/he can get you in sooner? Or perhaps prescribe the medication for the thyroid? Primary Dr.’s know about thyroid medications as well. Or, you can try seeing an ENT (Ear Nose Throat Dr)?
I was on the beta blocker a week before seeing an Endo. I called around to see when I could see an Endo when I wanted to change the Endo I was seeing but they were wanting to schedule me 4 months out. Fortunatelly, when I really needed it, the ER Dr. who saw me called the Endo’s office and the Endo, who later on I was wanting to change and who prescribed Methimazole, saw me a week later. I since then changed Endo Drs. but I did this already taking the Methimazole.
The Methimazole took a while to work so in my personal opinion, the sooner you get treated the better … Unless, your case is not GD. There are times when the thyroid gets inflamed and spills over the hormones and that is what makes one hyper. In that scenario it is not the thyroid that is producing more than needed hormone and therefore one does not need thyroid treatment. In that scenario one is prescribed only a beta blocker. You do have GD, right?
Caro
Hello. Hope your appointment went well.
I’m very new to all this but regarding your question as to who should be the person to tell you if you are in the active phase or out of it, well, I’m guessing the one who diagnosis it. It seems, by some of the responses given by the other forum members, that the person to do so should be your Opthalmologist. Anyway, just my $0.2.
Caro
Jules wrote:What I ment to say Yeasterday day is I use to get them when I was hyper and I still get them when I am hypo. Mine are def related to my well being on the thyroid hormones. I get less of them being hypo then hyper.I see.
snelsen wrote:I think that you will find that nasal spray will help, if you use it consistently.
Shirley
First thing that has helped me.I have been on the Nasal Spray for a couple of weeks now and I feel better. Not 100% well but better.
Kimberly wrote:Hello – This is a difficult decision that you and your doc will need to make. Although the standard in the U.S. is to limit ATD use to 18 months, some doctors will support longer-term treatment (which is more the norm in Europe and Japan). I made some comments about this approach in this thread:(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).
http://www.gdatf.org/forum/topic/42509/
As others have said, there is no perfect risk-free treatment…so all we can do is research from credible sources and consult with a medical professional that we trust.
Take care — and keep us posted!
Kimberly, I have left you a message in the link you recommended
