[Carito71]

#1059155

Hello.

I’m new to this forum. You can call me Caro. I haven’t officially been told I have Grave’s Disease but my TSI # is elevated. I’m very sad and scared. I found this forum and I thought it would be a good place for me to get started on my thyroid problems journey. I have read some of your posts. You are all so nice to each other and help each other out that I hope I can be part of your group as well. Let me tell you a little bit of what I have been going through.

I had noticed in April/May that I was starting to get tired easier. I thought I needed more sleep so I started taking naps. Early June I noticed that my heart rate was elevated. I thought maybe I was dehydrated so I stated to drink more fluids. On June 7 while at work, my heart was even more elevated and at break, I thought I was going to pass out. My manager aloud me to go home and I took a nap thinking that would help. Next AM I had to go to the ER because my heart rate was tachy (112-125bpm) and I was having a very hard time sleeping and I wasn’t feeling well at all.

At the ER I was told that my thyroid way hyperactive and I had hyperthyrodism. I was referred to an Endocrinologist, who I saw for the first time on June 14th. He asked my symptoms, felt my thyroid and decided to continue the Propranolol I was given at the ER and also start Methamizole 30mg a day. He wanted to do the Iodine uptake for testing but decided to postpone it since my BP runs low and my HR was averaging 90. He stated that he rather lower my thyroid and avoid sending me into a thyroid storm. He also asked for lab work and an ultrasound. After my visit with him I wasn’t able to sleep at all for one week and my HR stayed in the 90s low 100s. I had my ultrasound done the very next day but I still haven’t received my results. I have called the nurse multiple times but every time she tells me the Dr. hasn’t looked at them. As for my blood work, my #s before starting Methimazole are: TSH < 0.006. FT3 11.5 and FT4 3.40. Also, I had a TSI done while in the ER and it came back as 4.5. I don't know what this means but the TSI I had after my Dr.'s appt. came at 237, which is elevated by 98 points .... I think. Well, that is all for now. I’m very scared and sad. I try to stay strong and I’m happy that I have started sleeping again. My HR is in the 80s and 90s, so I guess it is starting to come down. I’m not hot all of the time any more either. I do feel very tired though. Greetings to everyone and thank you for reading me.
Caro

[Bobbi]

#1172575

Hi, Caro, and welcome to our forum.

Of course you are scared. Being hyperthyroid makes us feel awful. Please know, though, that we DO get well again. Our doctors can treat the hyperthyroid condition whether it is caused by Graves or not. Most of the time, it is caused by Graves. But even then, the treatments work to return us to normal levels of thyroid hormone. Then, after a few months you will start to feel normal again, too. Our bodies do need time “at” normal levels of thyroid hormone in order to heal.

[Carito71]

#1172576

Bobbi. 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

[Kimberly]

#1172577

Hello and welcome! Methimazole starts working right away to block production of *new* thyroid hormone, but you might feel symptomatic until your body burns off its existing stores of excess thyroid hormone, which can typically take a few weeks.

For those who have been undiagnosed for a long time, the healing process can take additional time while the body recovers from the damage done while they were hyperthyroid.

Take care!

[Carito71]

#1172578

Hello 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
Caro

[adenure]

#1172579

Hi Caro,

I just wanted to say hello & echo what Kimberly said, you WILL get better. It will take time. I learned that it isn’t a short journey, and it requires an awful lot of patience. I was diagnosed after having my 4th baby. Fortunately, I was diagnosed fairly quickly (a few months after the symptoms started). My endo. started me on methimazole (5 mg. daily) which I took for 7 weeks. It got my thyroid levels balanced, but I was part of the 1% where it was damaging my liver, so I had to stop the meds. I chose a thyroidectomy to treat my Graves; I had my surgery on the 15th and am in week 2 of recovery and doing well. I feel MUCH better than I did before surgery as far as the Graves is concerned- it is such a relief. I’m on Synthroid and recovering from surgery, recovering from being sick with Graves for the 6 months or so that I was dealing with it, but I’m grateful to be on the path to recovery.

Starting with the methimazole is a good step; it should get your thyroid in check. It took me about 2 weeks before I started feeling a difference in my symptoms. After 2 weeks, I wasn’t feeling like I did before I had Graves, but I felt better- especially my heart rate. It too was 100’s (120 at the worst) before the methimazole. After I started it though, it dropped down to 62, so it helped a lot. The only thing I noticed on methimazole was my hair fell out some and it felt thin. I guess, in a way, it not working well with my liver wasn’t a terrible thing (the damage it was doing revered itself and I’m fine now) bc I got the surgery done and I feel like I can move forward now. The treatment a person chooses is a very individual thing; I don’t believe there is a wrong answer unless your doctor says there is a medical reason why you are not a candidate for a certain treatment (like methimazole for me for example). Try to be patient and stay strong. I know it’s really scary because you don’t feel like yourself (I felt that way- physically, mentally & emotionally- I was a mess), but you will be yourself again.

Alexis

[Carito71]

#1172580

Hello 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!
Caro

P.S. Continue feeling better!

[adenure]

#1172581

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?

Hi,

No, I never felt sick before. I had a few symptoms a few weeks after having my baby which I attributed to just been worn out and tired from child birth. Then I was prescribed a Z- Pack for a sinus infection which sent me over the edge physically- I had heart palpitations, anxiety attacks- all related to the meds. (my body’s reaction to them; for some reason, my body is really sensitive to medication), once the antibiotic was out of my system, I felt better, but still not myself and the hyper symptoms kind of ballooned at that point. I think childbirth triggered it and the stress of the Z-Pack (my body’s reaction to it) sent the symptoms into overdrive. That’s when they tested my thyroid and figured it out. My heart truly goes out to people who have suffered years and years with Graves. I really only had a few months where it was really bad, and I never ever wanted to revisit that hyper state again. It really is a scary thing.

Alexis

[Carito71]

#1172582

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

[Kimberly]

#1172583

Carito71 wrote:

With this thyroid situation I’m pretty sure motherhood, at list by natural ways, is out of the picture

Caro

Hello – The good news is that there are plenty of women on this board who have had healthy babies after being treated for Graves’. You might use the search function to check for posts with keywords like “pregnancy” or “baby” to read some of their success stories.

However, your priority for *right now* is to get your thyroid levels under control before trying to conceive, as being either hypER or hypO can cause problems for both mother and baby during a pregnancy.

[Carito71]

#1172584

Kimberly,
That is good news. I will read about it. But you are right, I need to get well again first. The last thing I would want is to pass down health problems to an innocent baby.

Thanks for letting me know. It gives me hope.
Caro

[adenure]

#1172585

Hi,

Yes, my TSI was 234 I think? I’m not sure what that means exactly, but I guess it was considered high.

Yes, I was diagnosed with Graves with bloodwork. But, before my surgery, I had an uptake scan to completely rule out postpartum thyroiditis (which it did).

Don’t give up on having a baby; it might have to wait awhile, but never say never. I often wonder if Graves was starting to make its way into my life before I was even pregnant with my 4th son. I had 2 early miscarriages before I conceived my youngest (which I never had before). I think Graves can cause miscarriage. My 4th “stuck” because I took progesterone shots twice a week for the 1st trimester.

Alexis

[Carito71]

#1172586

Hi 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

[Robboford]

#1172587

Hi Caro,
My name is Debbie, welcome to the Forum. I have found all the participants on this Forum to be very helpful, understanding and knowledgeable. It certainly helps being able to talk about your concerns with others who have travelled or are still travelling the same path. If you have read any of my posts you will see that my Grave’s journey is nearing 10 months. Although my Doctors etc believe that I have had Grave’s symptons for a lot of years. You were asking others to give you an idea of length of time before you feel better. We are all individuals and our definitions of feeling well may vary. Some days I feel almost normal, but others I feel terrible. I have still got a number of months before my levels get close to normal to enable complete removal of my Thyroid. I seem to be 1 of the “Gravers” that have had nearly all the syptoms or side effects that fellow sufferers may or may not get. Hang in there – Power is knowledge and patience is powerful – you will get better just accept that evryone is different and have different journeys to travel. Please don’t believe everything that you may read or that others may tell you – this Forum has been great in giving me information and advice based on their own experience and it has enabled me pass on some of the same advice and insight that was given to me. I really believe now (it has taken a long while to accept and come to this conclusion) that I have been sent on this journey for a reason, and that one day I will be able to offer the same advice and reassurance to a fellow Graves sufferer.
Cheers, hugs and kisses
Debbie

[Carito71]

#1172588

Hello Debbie,

Thank you!!!! Your post made me cry and I thank you for your response. You are so right, we are all different. I’m so glad this forum exists. I hope you are soon feeling well all of the time. 10 months seems like a long time. I have gone through 1 so far … well it will be one on the 8th since diagnosis. I don’t know what has been going on but I feel like I haven’t really gotten better but there are 2 things that have changed. I can sleep now and I’m not hot all of the time. Having said that, I feel more tired now. My #s are still the same since I started the Rx so I think it will take some time.

I will look for your posts and learn more about your journey.

Thank you again.
Caro

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