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Hello AmyG. I’m new here too … welcome to the forum. I haven’t been officially been told by my Dr. that I have Graves but my TSI was 237 and so I think I probably do.
I know how you are feeling. It is very scary but I keep getting reassured by many that I will get well
I have been taking the Methimazole since June 16th. As of right now, I don’t feel hot all of the time and I have started sleeping again (I had insomnia for about a week and 1/2). What dose are you on? They put me on 30 mg/day. It is kind of high but not the highest.
I wish you the very best and I’ll read you later.
By the way, I posted more details about my background in case you are interested in reading. You can call me Caro.
I’m going to go rest. I’m terribly tired.
CaroHi Alexis.
My TSI is 237 … not much different from you. My Dr. hasn’t mentioned Graves yet but high TSI, from what I read, means Graves. I don’t know when he is planning on telling me.
My ultrasound finally came in. It says “Diffuse Goiter”.
My coworkers were telling me the same thing as you
They said “you got to look at the positive side of this”. I was so confused when they said that b/c I haven’t thought there is a positive side at all. They explained that maybe after being treated I could be more successful at having a baby.It is probable that you had symptoms already. I think I read the same. It caused infertility and problems with pregnancy. I’m so sorry about your two little angels. I often have thought if I miscarried in the past b/c I have had times were I have been very sick after thinking that maybe I was pregnant but still not detectible. I’m so glad you last baby “stuck”
I guess there is a positive side to all this.
Good night.
I’ll post about my ultrasound later on.Caro
Hello Kimberly, Alexis,
Well, I still haven’t heard any results about my ultrasound. The nurse did call me to tell me the Dr. will no help me with a Release to work form fro this week because once you are on Methimazole and Propranolol you should be able to do everything you did before … “even if heart is 112 at rest” (notice quotes). I asked that even if I felt dizzy and couldn’t drive yet. The response was “yes” …
So so frustrating. My heart was 114 yesterday at rest. I felt so sick. I have a job that requires all of my senses and this is so difficult. I just started to sleep again after not sleeping for a week and a half. I’m exhausted. I need some time to let the Rx work but the Dr. doesn’t want to help. You are so right … having a good Dr. is half the bottle. I could be resting right now and getting better but instead I’m trying to see what I can do to get help.
No … my next appt is in Sept. When I went to see him I was so out of it that I didn’t think of asking for one. The lab tech told me that my results would be ready in 24 hrs.
I’m glad you have good Drs. I will ask around about other Drs. Kimberly, you said something in another post about a Dr.’s registry. Where can I find that?
Thank you for your responses. At least there is a group of people who understand what I’m going through.
Caro
Alexis,
So glad you are doing better. Thank you for helping me with my questions this last two days. Your story gives me hopeDid the Dr. remove all of your thyroid?
Is TSI a concern in your case?
I’m asking because my TSI was high and if I understand it correctly, if I have my thyroid removed, the TSI will still be there bothering me with something else (eyes, skin … etc.?).
Are all of the GD symptoms gone? You mentioned that you were still feeling some of the effects.
Is Synthroid all you have to take to get what you need that your thyroid used to provide?
I’m kind of scared of being without a thyroid
but I haven’t researched it much.Wow … 4 boys. Congrats!! Sushi … mmmmm. I had that a few days ago. I don’t know if I should anymore though. I think I read that contains iodine.
Yes …. it is Versed … makes patients forget
and get relaxed.Why did you have surgery in CT and not where you live? Just wondering? Better Dr.?
Glad you are recuperating.
Caro
Hello Alexis.
Congratulations on having your baby. What a blessing!!Wow … did they test your TSI?
My Dr. told me that after an infection thyroid problems can take place b/c the immune system wants to attack and then starts attacking the thyroid. He made it sound that if that happens some times it can be something that will resolve itself in 6 mths or so. Yours was diagnosed GD though, right?I’m so sorry it happened to you and right after having your baby.
I think mine was triggered (this time …. if all other times I’ve been sick are related to GD) by taking Estrogen. My husband and I have been trying to get pregnant for 3 years and I started seeing a Reproductive Endocrinologist (RE). He run labs for TPOab, which came back in the 800s. He told me that it being + meant that I could develop thyroid problems in the future. He also ran a lab for TSH and that came back normal. He looked back at a TSH done a year earlier by my OB/GYN and that too was normal so he told me not to worry but to have my thyroid check periodically. So in Feb I asked to have it checked. The OB/GYN ran TSH labs and again …. normal. But back to my story, the RE gave me Estrace, HCG, and Progesterone as part of the treatment to try getting pregnant. I saw him from June-Nov 2011 without success. He also told me that there was a very small chance that I could get pregnant. I had ultrasounds done constantly. I became stressed out with the whole thing that in Nov we decided to give it a break. I was feeling healthy and had been feeling healthy for the last 2 years. I even thought to myself a couple of times how good I was feeling and being happy about it because as I mentioned earlier, I have had times in my life were I have been very sick. Anyway, that good feeling didn’t last long unfortunately.
Graves is a scary thing. Very scary. You are scared you are going to die and then you are worried that you will stay so sick for the rest of your life.
With this thyroid situation I’m pretty sure motherhood, at list by natural ways, is out of the picture
You know, I had a couple of days were my TMJ and ear were really hurting before all this happened but my white blood cell count did not show infection. Oh well … I hope that at the end of all this, this disease teaches me something worth while.
Caro
Hello Kimberly
Thank you for replying back and sharing your # with me. I’m so glad you told me about the TSI and remission. My Dr. has prescribed the Methimazole for 6 weeks and then he wants me to stop it. At that point he wants to do labs for TSH, FT3 and FT4 but no TSI …. probably b/c of what you shared with me before about the TSI not changing that fast.
I think I’ll call the Mayo Clinic Labs to see what the 4.5 means in my results. I was thinking that the “index < EQ 1.3" might mean 130%. If that is the case then the 4.5 might mean 450%
The only thing is that if that is the case, how can it be 237 a week later?Thank you!
CaroHello Alexis. Thank you for your response and for sharing your experience.
I’m so glad you are doing better now
Can’t wait to get there. Your words reassuring me that I can get better are so helpful too.Being diagnosed early is a blessing. I don’t really know when all of mine started for I have had several periods in my life when I have felt miserable for a while … and I have always lost lots of weight … and some times hair. My thyroid was always checked but it always came back in the normal range (only TSHs were checked as far as I know). About 4-5 years ago I remember getting super thin for a while and my heart was going fast. I had an echo which showed that all was normal. I was told I was anemic and that I needed Iron. That was true but I wonder if that was really the problem. It took me several mths to feel normal. Never though have I felt as sick as now. My HR is elevated so that really scares me. The insomnia made everything worse and I’m still trying to catch up on sleep (finally was able to start sleeping again a couple of nights ago).
Anyway, 5 mg/day is a small dosage in comparison to what they gave me. I’m on the 30 mg/day. They most have really caught it early on you. I will take this amount for 6 weeks and I will have labs after that. Then he wants me to wait 4 weeks after that before I see him but I just noticed that they waited actually 8 weeks since my next appt is Sept. 17. I will probably need to call them about that.
I’m sorry the Rx started damaging your liver. That most have been super scary. And only with 5 mg/day. I hope mine is good. My enzymes were a little bit elevated one week and 1/2 ago when I had my baseline labs but he still sent me home with the Rx. I haven’t had any stomach problems though … thank God!
You had your thyroidectomy on the day I had my 1st ultrasound
I so glad all went well for you and that you are feeling much better. Keep recuperating and getting well.So it took you about 2 weeks to start feeling better. I’m almost at 2 wks. Today is my 10th day. My HR still up in the 90s though and some times it gets in the low 100s. I’m so afraid of leaving the house because I don’t want to get sick while out.
Thank you for your advice. I will try to be patient and strong as hard as that is right now
Thank you. Your words are a great help and hearing how well you are doing now also gives me hope.
Can I ask you a question. Did you feel sick years before but didn’t think it was related? Or were you always healthy and then next thing you know you are terribly sick? Just wondering since I think I have always been sick but undiagnosed and told it was something else. I’m also allergic to Gluten and yeast and have had anemia and alopecia areata for a long time. My anemia is almost gone and I have the Gluten/Yeast thing under control. Alopecia doesn’t visit me very often … thank God!!
Thank you again!
CaroP.S. Continue feeling better!
Thank you for your response Kimberly. I know … no Dr.s here
I didn’t know they had a long “shelf life”. That is good to know. I was getting worried that he hadn’t asked for a TSI test 5 weeks from now. 5 weeks from now I have labs again for TSH, FT3, FT4.
Yes, the ER used a Mayo lab and the Dr. used LabCorp. 4.5 and 237 sure are two different #s. I was hoping the # differences meant that the TSI had decreased . . . but they were taken 1 week apart.
Does TSI only increase with GD? How high can it get? I wonder what it means when the TSI is in the normal range of 0-139.
I had a TPOab done one year ago by a RE and it too was high … 800 something. All the RE told me was to test my thyroid periodically because at that time my TSH was normal. So in Feb I asked my OB/GYN to test me. Once again … normal TSH. Little did I know I would be stuck here today.
Thank you again,
CaroHello Kimberly,
Thank you for your response.Well, that would make sense as to why it is taking a long time. We practically have to live out the excess hormones … ouch!
I think I have had thyroid problems all my life. I have alopecia areata that thank God doesn’t visit me but once in a while. It started when I was 12. Now I wonder if they are related because also around the same time when my hair falls out I feel very very tired. I have had thyroid labs done many times before because of the hair problem but every time my labs had been normal. Though I think they only tested TSH. My last TSH was in Feb and it was in the normal range. Anyway, I remember being super think and very tired about 4 years ago. It took me about a year to start gaining weight back. My hair started to fall out a little bit after that.
My whole like my hair problem has been a big problem for me that I had kind of learn to live with it but now that I have been diagnosed with hyperthyrodism/probably GD, I’m doing poorly. I guess I’m going to have to learn how to cope with this too.
I’m glad the Dr. started me on the Rx right away then instead of doing a scan and waiting, which is what he wanted to do but then he saw my HR and my BP and said that he didn’t want to send me on a thyroid storm with the iodine.
I sure hope I start to feel well soon. I haven’t worked since the 8th of June. I would like to return soon. I miss it.
Thank you again Kimberly
CaroBobbi. Hello. Thank you for your message. Your post makes me feel better. I SO want to get well and I’m so afraid I will not so is great to read that “we DO get well again”.
About how long do you think it takes to get well? I have been on the Methimazole starting on the 9th day today and I feel so so exhausted. I’m afraid of leaving the house because of my heart rate still being in the 80s-90s @ rest, though yesterday it got to 102 again
I need to get back to work though and I’m afraid I’ll feel sick by the time I get back.My Dr. doesn’t want to increase the Propranalol and has me taking 10mg 3 times a day but by the times I have to take the next dose my poor little heart is close to 100 @ rest. I have mentioned this to his nurse but she called me back to tell me to take it only 3 times a day. I don’t like how he doesn’t want to increase it a little bit. The ER Dr. ordered 1-2 tabs 10 mg 3 times a day but he lowered the dose at my visit. I have read that more is safe and probably better for the heart and even thyroid.
You said it will take mths before maybe feeling normal again but my Dr. wants me to take the Methimazole only for 6 weeks. After that he wants labs (FT3, FT4 and TSH). He wants me to wait 4 weeks and then he wants to see me again so to schedule a thyroid scan. I’m afraid his plan will make me hyper again.
Bobbi, thank you once again. Your words made me feel better. Its good to know there are people out there who understand how I feel. I just wish none of us had to feel so sick.
Thanks,
Caro
