Just Beginning - Am Really Scared

[Georgiagirl]

I am at the beginning of this process. I have read many things on the internet and am now really scared. I go in for scan and ultrasound next week. Four years ago, I started to have really strange eye symptoms. I was told I had allergys among other things (UGH), but after seeing three doctors while having the classic symptoms of GD, no one could get it right. I have noticed other strange things with my brain function. I have a high powered job with travel, and I have noticed a strange decline in my communication skills -I cannot find the right words. I also seem to have a hard time spelling all of a sudden. I am really scared of everything right now. My first blood test showed my free T4 level to be 4.08. I have lost 12 lbs with no effort at all. I have an appt with an endo at Emory in a few weeks, but my heart rate over the last couple of weeks has been in the 120's. I have all of the symptoms listed for GD. My OBGYN was the one who, after listening to my strange symptoms, ran the first blood test. I know that I will have a lot of support from my sister and close friend, but I feel very isolated. My two kids don't understand why I just start crying at the strangest moments. I am not good at "take it one day at a time."

[Andros]

I am at the beginning of this process. I have read many things on the internet and am now really scared. I go in for scan and ultrasound next week. Four years ago, I started to have really strange eye symptoms. I was told I had allergys among other things (UGH), but after seeing three doctors while having the classic symptoms of GD, no one could get it right. I have noticed other strange things with my brain function. I have a high powered job with travel, and I have noticed a strange decline in my communication skills -I cannot find the right words. I also seem to have a hard time spelling all of a sudden. I am really scared of everything right now. My first blood test showed my free T4 level to be 4.08. I have lost 12 lbs with no effort at all. I have an appt with an endo at Emory in a few weeks, but my heart rate over the last couple of weeks has been in the 120's. I have all of the symptoms listed for GD. My OBGYN was the one who, after listening to my strange symptoms, ran the first blood test. I know that I will have a lot of support from my sister and close friend, but I feel very isolated. My two kids don't understand why I just start crying at the strangest moments. I am not good at "take it one day at a time."

Hey, Georgiagirl!! Welcome to the board. Wonder what the range is that goes w/ that FT4 test? Different labs use different ranges.

Has anyone run any antibodies' tests yet? TPO (antimicrosomal antibodies), TSI (thyroid stimulating immunoglobulin) and Thyroglobulin Ab would be a good start.

Everyone is affected differently. I too, was at a loss for words. I could think what I wanted to say but the brain was not sending the message to my mouth and while I am quite literate, I was always at a loss for words.

Here is a letter for your family............ http://home.rica.net/deecee/information.htm

Graves' Disease is not a walk in the park. We are here to help you as best we can. Most of all, we can and will be supportive of you in your time of need.

I live in Henry, Co.. So, as one Georgia Girl to another, hang tough. You "will" get through this.

[jsgarden1]

Hi Georgiagirl,

I too was diagnosed by my GYN because I need surgery. My bloodwork came back and she was able to tell me that I had an apparent thyroid problem and to get to an endo as soon as possible. She did scare me a little, telling me that I could die on the table if I had surgery at that point. I've been dealing with this for about 8 or 9 weeks.

I imagine you are worrying about that rapid heartbeat! I was running 117 and still do if I get busy at work lifting and hauling freight. Hopefully your endo will be able to give you medication to help ease that up.

Andros is a HUGE help on this board. She really knows what she's talking about. I found this board before my first endo appt. and everything she said he would do he has done! I'm scheduled for a CT scan on my eyes this Monday to rule out any other problems and then on to a specialist the following Monday. This Graves Eye Disease (GED) is rotten stuff, I know!

Take a deep breath and know you will get through this. If you need a shoulder to lean on my e-mail is jsgarden1@aol.com. We can compare notes!

Take care and relax
Debbie

[Georgiagirl]

Thanks to both of you for your responses!!!!

I read the family letter and will pass it on to friends and family. So far, I do not have anger issues. However, I have huge panic attacks while driving on the highways in atlanta (started a year ago). If you pass someone that cannot go over 55 mph, it is probably me. I thought I was losing my mind!!!

I have had more blood tests done - I don't know exactly what they were but were all related to the Thyroid. I am supposed to make another appt with the GP after the scan and ultrasound.

The T4 results range was .84 - 1.77, and mine is at 4.08. I don't even know if that is considered moderate or severe. I have been reading about different treatment options, but all seem to have drawbacks.

I know I have some eye involvement, although it is not visible. I am sure I need a CT scan of my eyes as well, although the eye symptons have existed for four years. So far, my eyes dont protrude.

I am trying to stay calm-I am not good at calm. I really appreciate the support!

Stacey

[Andros]

Thanks to both of you for your responses!!!!

I read the family letter and will pass it on to friends and family. So far, I do not have anger issues. However, I have huge panic attacks while driving on the highways in atlanta (started a year ago). If you pass someone that cannot go over 55 mph, it is probably me. I thought I was losing my mind!!!

I have had more blood tests done - I don't know exactly what they were but were all related to the Thyroid. I am supposed to make another appt with the GP after the scan and ultrasound.

The T4 results range was .84 - 1.77, and mine is at 4.08. I don't even know if that is considered moderate or severe. I have been reading about different treatment options, but all seem to have drawbacks.

I know I have some eye involvement, although it is not visible. I am sure I need a CT scan of my eyes as well, although the eye symptons have existed for four years. So far, my eyes dont protrude.

I am trying to stay calm-I am not good at calm. I really appreciate the support!

Stacey

Stacey! Me too on the driving issues. Wow!! It brings me back.

On the T4, that could be just moderate as T4 (total) is bound, unbound hormone. Hope you can get Free T4 and Free T3 which would be the unbound hormone available for cellular uptake.

To see your life implode does not lend it's self to calmness. Been there and done that. Sending you hugs. {{{{Stacey}}}}

Andros

[Andros]

Thanks to both of you for your responses!!!!

I read the family letter and will pass it on to friends and family. So far, I do not have anger issues. However, I have huge panic attacks while driving on the highways in atlanta (started a year ago). If you pass someone that cannot go over 55 mph, it is probably me. I thought I was losing my mind!!!

I have had more blood tests done - I don't know exactly what they were but were all related to the Thyroid. I am supposed to make another appt with the GP after the scan and ultrasound.

The T4 results range was .84 - 1.77, and mine is at 4.08. I don't even know if that is considered moderate or severe. I have been reading about different treatment options, but all seem to have drawbacks.

I know I have some eye involvement, although it is not visible. I am sure I need a CT scan of my eyes as well, although the eye symptons have existed for four years. So far, my eyes dont protrude.

I am trying to stay calm-I am not good at calm. I really appreciate the support!

Stacey

Stacy........may I suggest that you start a file folder for your medical and take a self-addressed, stamped envelope w/ you each time you get labs. They should be happy to mail you a copy.

As this rolls along, you will be very very glad you have done this.

Andros

[Georgiagirl]

That is a great idea about the medical records. I am sure I should just go ahead prepare a stack.

Wow - I have never spoken to another person who could relate to driving issues. I told a couple of people what was happening, and they just gave me strange looks/responses. I have to get mentally/emotionally prepared to drive on the highway. I live in Cumming so I am always traveling down GA 400.

Do the Endocronologists usually do a biopsy of the thyroid? If so, I am going to try to change my appt. Right now, I don't see the Endo until Nov. 24.

Thanks,
Stacey

[Andros]

That is a great idea about the medical records. I am sure I should just go ahead prepare a stack.

Wow - I have never spoken to another person who could relate to driving issues. I told a couple of people what was happening, and they just gave me strange looks/responses. I have to get mentally/emotionally prepared to drive on the highway. I live in Cumming so I am always traveling down GA 400.

Do the Endocronologists usually do a biopsy of the thyroid? If so, I am going to try to change my appt. Right now, I don't see the Endo until Nov. 24.

Thanks,
Stacey

Oh, yes............that was the single thing that gave me the most anxiety; I felt I could no longer trust myself to make a quick response. Also, there were times if I went to a mall , I could not find my vehicle. I would totally panic over that one. And at that time, I found going to a mall or otherwise very busy place caused me to be very very disoriented. It seemed to be some kind of motion disorder w/ all the people walking around and I think the same with other cars also. I never could quite put my finger on it. I just called it "sensory overload."

If you have nodules/goiter FNA (fine needle aspiration) or a radioactive uptake would be a good thing. It is always wise to rule out cancer or other irregularities. Assuming does not quite cut it with me and I have good reason to feel that way based on years of experience not only w/ myself but w/ others.

Wow; you are waaaaaaaaaaaay up there. 400 would freak me out. LOL!

[Georgiagirl]

That's exactly the problem I have with highways. It is all of the other vehicles driving so fast around me that makes me feel disoriented and freaked out. I just try to stay out of everyone's way-right hand lane all of the way.

According to the GP, I have one nodule that she can feel. I have a slightly enlarged thyroid. I also have a sightly enlarged lymph node on the same side as the thyroid nodule. I guess I will know more after the scan and ultrasound on Monday/Tuesday.

I have read about how hard weight control is after Graves. I don't care if I gain some weight, but I have read about people gaining 40-60 lbs.

Is that accurate? I am only 5.2' - I don't have enough room for 60 more lbs. Until recently with my heart racing, I would exercise 5-6 days a week. I have read some people's experiences where no matter how little they eat and how much they exercise, it does not help.

[Andros]

That's exactly the problem I have with highways. It is all of the other vehicles driving so fast around me that makes me feel disoriented and freaked out. I just try to stay out of everyone's way-right hand lane all of the way.

According to the GP, I have one nodule that she can feel. I have a slightly enlarged thyroid. I also have a sightly enlarged lymph node on the same side as the thyroid nodule. I guess I will know more after the scan and ultrasound on Monday/Tuesday.

I have read about how hard weight control is after Graves. I don't care if I gain some weight, but I have read about people gaining 40-60 lbs.

Is that accurate? I am only 5.2' - I don't have enough room for 60 more lbs. Until recently with my heart racing, I would exercise 5-6 days a week. I have read some people's experiences where no matter how little they eat and how much they exercise, it does not help.

Re the weight; my humble advice is to cross one bridge at a time. It was not easy but I got back to my 9/10 junior. I was up to 190 at one time. Eeeeeeeeeeeeks. It was horrible. I am only 5'4".

You have to heal first and then we can talk about getting of the unwanted weight. And take heart; you will get it off.

In the meantime, stay on a sensible diet.

[Nova]

I am new to this board but not to Graves so I really emphathize with you! You've already been through the worst part, really, which is finally getting someone to diagnose you accurately while your hormones are raging and all those crazy symptoms are happening that no one seems to have answers for! I had every symptom you wrote about (and more and I'm sure you do too!). My GYN diagnosed me initially as well due to many miscarriages and the story I gave her through sobbing tears. I know, it's not an easy process to go through but if you focus on accomplishing treatment and *try* not to worry (I know it's hard) about what might happen (side effects, weight gain, etc.) you'll find that you may maintain more sanity that way in the end. I wish I would have found this board when I was going through the initial treatment stage. Everyone sounds very knowledgeable and supportive here. Just be your own advocate by reading as much as you can and asking questions - don't be shy to question your doctors! Once I got treatment it did take some time (3-4 months for me) before the disorientation/anxiety went down and I have been struggling to fine tune my thyroid replacement med dosage for a couple of years...but I know there is light at the end of the tunnel, things are much better now than before. I had radioactive iodine treatment for my condition. Best wishes!

[Andros]

I am new to this board but not to Graves so I really emphathize with you! You've already been through the worst part, really, which is finally getting someone to diagnose you accurately while your hormones are raging and all those crazy symptoms are happening that no one seems to have answers for! I had every symptom you wrote about (and more and I'm sure you do too!). My GYN diagnosed me initially as well due to many miscarriages and the story I gave her through sobbing tears. I know, it's not an easy process to go through but if you focus on accomplishing treatment and *try* not to worry (I know it's hard) about what might happen (side effects, weight gain, etc.) you'll find that you may maintain more sanity that way in the end. I wish I would have found this board when I was going through the initial treatment stage. Everyone sounds very knowledgeable and supportive here. Just be your own advocate by reading as much as you can and asking questions - don't be shy to question your doctors! Once I got treatment it did take some time (3-4 months for me) before the disorientation/anxiety went down and I have been struggling to fine tune my thyroid replacement med dosage for a couple of years...but I know there is light at the end of the tunnel, things are much better now than before. I had radioactive iodine treatment for my condition. Best wishes!

Hi Nova and welcome to the board. Thank you so much for your words of encouragement; they are much appreciated here.

Tell me; when did you have RAI? What thyroxine replacement are you on and how much? How do you feel? Do you have current labs and ranges you would like to share w/ us?

[Nova]

I had RAI in 2005 and I've been taking Levoxyl since then. The last lab I had in the beginning of November showed low thyroid levels so my endo prescribed 150 mg vs the 125 I was on for the two years. It's been a long road to get here but I'm hopeful that perhaps we'll find the right dose soon. I'm supposed to have another lab in three months for follow up, and of course, yearly evals. I empathize with folks who are struggling to get diagnosed because it took four doctors four years to determine I had Grave's. In the meantime I became thyrotoxic and had many miscarriages not knowing what was wrong but knowing something was in fact wrong. I explained to doctors that I was very physically active and could not explain the weight gain, the fatigue, the rapid heart rate at resting, the anxiety, the mental fog, the red itchy bumps on my face they thought were allergies but that the medicine didn't effect, or the myriad other symptoms I had. I felt I knew my body well enough to say that something drastic was happening. As I mentioned in my last post, it was not a primary doctor who diagnosed me but a GYN who finally listened. I paid out of my own pocket to have blood tests run bc I was tired of not having answers - and that was where the diagnosis was confirmed and I was finally referred for treatment. When I think back on all those times that a doctor told me that maybe it was something I was or wasn't doing - such as not really exercising as much as I claimed bc that couldn't be possible, or eating more than I claimed bc that made sense to them, I get angry bc I know there are many other people like me getting misinformation. That anger though over the years has changed into empowerment and when I get myself straightened around further I plan to write up my experiences and present them to the folks who missed the mark on what occurred and to whatever other medical audience will listen so maybe someone will get better answers and treatment than I did and than it seems so many others are still getting. Once you know the symptoms, once you know there is a blood test, there's treatment, and not everyone fits in a magic "within normal limits" box, and how important it is for a doctor to listen and follow up on a patient's concerns, then I believe there's hope for change.

[Andros]

I had RAI in 2005 and I've been taking Levoxyl since then. The last lab I had in the beginning of November showed low thyroid levels so my endo prescribed 150 mg vs the 125 I was on for the two years. It's been a long road to get here but I'm hopeful that perhaps we'll find the right dose soon. I'm supposed to have another lab in three months for follow up, and of course, yearly evals. I empathize with folks who are struggling to get diagnosed because it took four doctors four years to determine I had Grave's. In the meantime I became thyrotoxic and had many miscarriages not knowing what was wrong but knowing something was in fact wrong. I explained to doctors that I was very physically active and could not explain the weight gain, the fatigue, the rapid heart rate at resting, the anxiety, the mental fog, the red itchy bumps on my face they thought were allergies but that the medicine didn't effect, or the myriad other symptoms I had. I felt I knew my body well enough to say that something drastic was happening. As I mentioned in my last post, it was not a primary doctor who diagnosed me but a GYN who finally listened. I paid out of my own pocket to have blood tests run bc I was tired of not having answers - and that was where the diagnosis was confirmed and I was finally referred for treatment. When I think back on all those times that a doctor told me that maybe it was something I was or wasn't doing - such as not really exercising as much as I claimed bc that couldn't be possible, or eating more than I claimed bc that made sense to them, I get angry bc I know there are many other people like me getting misinformation. That anger though over the years has changed into empowerment and when I get myself straightened around further I plan to write up my experiences and present them to the folks who missed the mark on what occurred and to whatever other medical audience will listen so maybe someone will get better answers and treatment than I did and than it seems so many others are still getting. Once you know the symptoms, once you know there is a blood test, there's treatment, and not everyone fits in a magic "within normal limits" box, and how important it is for a doctor to listen and follow up on a patient's concerns, then I believe there's hope for change.

Thank you so much for sharing your story. I was sick for 20 years and spent thousands w/ doctors. Finally, I had a thyroid storm and almost died from that. THAT is when I got a diagnosis. I now have a damaged heart and my eyes while so much better thanks to radiation and surgeries are permantely damages as well.

The above is why I am here. It is a labor of love. I don't want others to suffer as you and I have.

So.........your continued input will be appreciated. We need to teach others how to advocate for themselves. Knowledge is the key.

Have you ever had a Free T3 test? I am wondering if you are converting well?

PS: I am so so sorry for your losses.

[Nova]

I don't believe I have had a free T3 test. Tell me more about it if you have time or I can certainly look it up as well - I appreciate any information you can share. It's hard to believe you have been through so much...20 years?! That's insane. I'm sorry you had to suffer damage to your body and almost die to get help. That's exactly the kind of thing I figured was happening out there to others but didn't have anyone to connect with about it until now. I had developed a heart murmur after my heart rate was so high for so long and when they told me that, maybe it sounds silly in the big scheme of things and after all the other things that happened, but I cried (well, there were many cries over many issues truth be told!). My heart had been damaged bc someone who studied medicine (four someone's actually) didn't recognize common place thyroid symptoms and I hadn't been given any treatment options sooner. I can't even begin to talk about the miscarriages. That's still an extremely sore spot with me and my husband as you can imagine. We are still hopeful that we may be able to have kids but I need to get my thyroid levels under better control before that has a chance of happening without continued loss. Thank you SO much for starting this board and continuing it as you are. I will spread the word to others as I know how comforting it can be to hear from someone who has been there and done that for sure! I will look forward to your posts and comments for others as I know I can benefit from them as well! If I have anything of benefit to add I will gladly share.

[Andros]

I don't believe I have had a free T3 test. Tell me more about it if you have time or I can certainly look it up as well - I appreciate any information you can share. It's hard to believe you have been through so much...20 years?! That's insane. I'm sorry you had to suffer damage to your body and almost die to get help. That's exactly the kind of thing I figured was happening out there to others but didn't have anyone to connect with about it until now. I had developed a heart murmur after my heart rate was so high for so long and when they told me that, maybe it sounds silly in the big scheme of things and after all the other things that happened, but I cried (well, there were many cries over many issues truth be told!). My heart had been damaged bc someone who studied medicine (four someone's actually) didn't recognize common place thyroid symptoms and I hadn't been given any treatment options sooner. I can't even begin to talk about the miscarriages. That's still an extremely sore spot with me and my husband as you can imagine. We are still hopeful that we may be able to have kids but I need to get my thyroid levels under better control before that has a chance of happening without continued loss. Thank you SO much for starting this board and continuing it as you are. I will spread the word to others as I know how comforting it can be to hear from someone who has been there and done that for sure! I will look forward to your posts and comments for others as I know I can benefit from them as well! If I have anything of benefit to add I will gladly share.

Free T3 would be your unbound active hormone available for cellular uptake. This is your energy source. When you have Totals done (T4 and T3), that is bound and unbound and it is hard to tell what percentage is your unbound.

If you can get the TSH, Free T4 and Free T3 all at once, that would be very very revealing. I am suspecting you are not converting your T4 to T3 and that is why each time you raise your thyroxine replacement, you are not seeing good results.

[Georgiagirl]

Nova thanks for your encouragement. I am glad to know that you felt better with regard to the anxiety issues after a few months. I struggle with driving on the highway everyday – talk about a racing heart. The folks on this message board have a lot of knowledge and all seem so kind. Andros mentioned that I should ask for a copy of my test results which I think is a great idea so that I can keep track of my levels at the various stages. I know that staying calm and focused is the best approach, but the weight and eye problems really worry me.
I understand your pain over the miscarriages. I have two children, but lost my third (a girl) at 20 weeks. I was so sad for a long time, but my other two were very young, so I just had to continue on like normal.
I go back to the endo on December 14 for a biopsy of my thyroid, and then in January, I see a general surgeon for a biopsy of my lymph node. I don’t know if the Endo will keep me on the anti thyroid meds, but for now, that is what I hope she does. I don’t seem to be having an adverse reaction. Thanks for sharing your experience.

Stacey

[Nova]

Thanks Andros! I will check into it - I would imagine my endo has been doing the test but I haven't been up to speed on the conversion issue...I'll be ready at the next appt! Best wishes Stacey!!

[Andros]

Georgia Girl...I too have had Graves Disease and recently had my thyroid removed. I am writing to you because I have family in Cumming! What a small world. They live on ****erson off Post Rod. Too funny.

Well, I totally hear about the "not taking one day at a time well". I have four girls and a husband that travels. I was at the point that I was crying for everything under the sun and was unable to have a conversation witha nyone without tearing up. I would come home, though, and explode on my girls. Years of SSRI's that never worked. Diagnosed with GD last Christmas. I do not have an endo in my town so I went with an ENT surgeon. He did the surgery but admittidely does not know how to manage the post-med situation. I go to Indy and see an Endo on Dec. 9th.

After taking with Andros, I made the surgery decision as the other options were really not options for me. I am not dissapointed with my decision but just need to be patient and realistic. It is still going to take time.

As far as the weight, I never lost any with GD. I have not noticed any significant weaight gain yet. I am only 5'3". I am going to accept whatever the weight issue is if I can start feeling better. I have suffered from thyroid issues for 12 years and am praying that I am reaching the end of the line!

Good luck with your search for answers. Unfortunately, it really takes time and I am learning that the doc's really can't say what will happen for sure because it is such a case by case thing. We all react and respond so differently and this is an autoimmune disease. It has a mind of its own.

Good luck!!
Caroline

So, how are you feeling? Are you on thyroxine replacement?

Just a little note to all.......
If you can, please stick to your original thread (posting) so medical information and background is handy for reference. It will be much appreciated by moi! And, if you already do; thank you ever so much.

Also, everytime a new thread is started, we don't get a "notification" of that post.