Newbie here - *SO* Glad I found this site!

[Weasel311]

Hi everyone.

First I have to say how happy I am to have come across this website! I have been googling thyroid related items for 2 years now since my family and friends have no input and my doctors aren't exactly available 24/7...

Here's my story: I apologize in advance that this will be really long!

26 year old female from Florida. Pretty healthy.

In April of 2009 when I was 24, I was sitting at work and all of the sudden my neck started hurting! It was almost like a stinging pain where my thyroid was. It lasted a few days but then went away so I brushed it off as a random pain. Then a few weeks later, I suddenly had appendicitis! I was completely fine one day, and the next I was so sick I went to the hospital and had my appendix removed. At that time I had bloodwork done and nothing out of the ordinary other than my infection showed up.

In May, I started to get very hot and sweaty when I was working. My job is pretty active (doggie daycare assistant manager) and I was used to running around, but I would be totally drenched in sweat and so hot I thought i would pass out! I thought it was weird, but again didn't think too too much of it. I was thinking maybe since I just had surgery my body was getting back in the swing of things.

Over the month of May, I quickly developed hyperthyroid symptoms (but I was confused by what was happening didn't know anything about thyroid). I was *exhausted*- sleeping 18 hrs a day, literally crawling from the bed to the bathroom at night (somehow i made it through work??), and then when the heart palpitations and shortness of breath started, I got scared and went to the hospital.

After taking my vitals they immediately admitted me and after lots of blood tests told me it was my thyroid. I had to stay for 5 days because my body was so weak. They referred me to an endocrinologist who I have been seeing since then. I had one nodule at that point.

At first she was very helpful, but over time it became harder and harder to get in to see her and she was less and less compassionate at each visit. She said my thyroid levels were still fluctuating and adjusted my methimazole up and down several times over the first year. She had me do routine blood work, and once she had me do a blood sugar urine test. I was feeling a little cruddy that day, and after my Dr. got my results, she called me and told me my blood sugar was 39 at the time of the test and that I was probably very sick and that at 39 I should have been in a coma??

She gave me a blood glucose monitoring device, and every time I took my blood sugar at home, it was pretty normal. I asked if the lab work was a mistake and Doc said no. I was baffled. Dr. then wanted me to have an ACTH stimulation test (this was in October of 2010) to see why my thyroid and blood sugar were out of whack. After a while my thyroid nodule disappeared also.

Unfortunately at that point, my relationship with the doctor reached a breaking point after a very frustrating attempt to schedule the ACTH test.

After that, I continued on the methimazole for a few months. By December I was starting to feel like I was hyper AND hypo...as if it would fluctuate each day! Finally found a new endocrinologist who so far is awesome!

He asked if I have ever had a RAI uptake scan, which I hadn't, and he said unfortunately to get a good picture of your condition, he had to take me off the methimazole for a month and then we could do the scan.

Well....it has been 3 weeks and 6 days. My scan is Monday & Tuesday..thank goodness. I am super sick right now... I am shocked that my hyperthyroidism ramped back up so quickly. I feel almost as bad as I did when I first went to the hospital 2 years ago.

I have been having very bad palpitations, and unfortunately most beta-blockers do not agree with me...they give me anxiety, ironically (i know in most people they reduce anxiety), so I have mostly been enduring the palpitations without meds. Took the week off work and just taking it easy.

I have been having terrible headaches in the middle of the night, and also sporadic nosebleeds. I called my endo and told his staff about it, and they said there wasn't much they could do until the scan. My symptoms have been slowly increasing again... as each day passes, I become more and more ill. It's awful! But you guys know...

So I have been driving my husband nuts with my sicky-ness (he is so sweet about it all, bless his heart) and I just wanted to hear input from others who have dealt with thyroid problems.

My questions are- How do doctors differentiate between Graves and other causes of hyperthyroidism? Has anyone else had nosebleeds and night headaches due to any of these conditions? I know Graves is autoimmune and it made sense to me...first my immune system attacked my appendix, then my thyroid. And to be honest, i have not had a cold or flu in the entire 2 years that my thyroid has been acting up.... It could be me overthinking it, and I'm just going crazy from the internal monologue i've been having since being sick. I wonder what the blood sugar thing is...can thyroid affect blood sugar? Any idea if Graves can last a long time? I was thinking it is a lifetime thing, is that what you guys think/know? For the amount of doctors I have seen I know surprisingly little about this whole ordeal. Sigh.

Hopeful that my scan results will send me on my way to feeling better. Any advice, or info, or personal experiences are greatly appreciated. Thank you!

[desrtbloom]

Hi there! :hugs:

Sounds like you have been going through quite a lot over the last couple years. Having the RAI scan is a good thing. Definitely needed to see what is going on with your thyroid. Also, you might want to post your blood results, with the ranges, as that is helpful.

Unfortunately, if you have Graves disease or Hashimoto's Thyroiditis, they are both auto immune disease and there are no cures. You will have Graves or Hashi's for your lifetime and require regular blood checks and possibly medication the rest of your life. Have you had your antibody levels checked? That can usually determine if you have Graves Disease or not. Also, the Graves Disease foundation has a good site: www.ngdf.org. You can be hyperthyroid or hypothyroid without having Graves or Hashis. So I would suggest you have a complete thyroid blood panel done if you still don't have a diagnosis at this point. The full blood panel will tell your doctor what it is you are experiencing and give you a proper diagnose.

I have had headaches with my issues, but not nose bleeds. With auto immune disease though, and specifically thyroid issues, you can have all sorts of really strange and/or odd symptoms. I have had so many symptoms. Like you, I was so weak and I had bad muscle wasting in my legs and arms. I couldn't even stand to get myself off the toilet. It was horrible. I was off work for six months. It seemed like everyday I would have a new and strange symptom. Thankfully, I have a wonderful endo and she is always there for me. That for me has been so important in my new battle to regain my health. Because I have both Graves and Hashis, I was a mess and up and down like a dang yo-yo. You can just have one disease and still have the ups and downs though. I was on the Methazimole and it took three months for it to stabilize my blood to where I could even have surgery to remove my thyroid as that was my only option. Anyway, it is a long road and one that requires patience (which is very hard to deal with when you feel like sheet :sad0049:).

As for auto immune diseases, unfortuately once you have one you are more easily predisposed to others. Diabetes is an auto immune disease, so a lot of folks that have thyroid issues have diabetes or MS or Lupus or many other auto immune diseases.

It sounds like you have now found a great doctor to work with you. Once you get your RAI scans done, please let us know your results and what your doctor recommends for future treatment. You really don't want to be on the Methazimole for a long time as it is very damaging to the liver long term.

Anyway, I'm sure others will respond and share more insights and knowledge with you.

Best Regards,
Patti

[Weasel311]

Patti- thanks!! I am having more blood work done this coming week and I will update you guys with the scan and blood results.

It's good to know that these random symptoms are *probably* thyroid related...it makes me feel less like i'm falling apart if I can blame it on one thing.

As for the diagnosis, my original endo told me for sure that I have Graves, but I never quite understood how they determined that or if she just jumped to that conclusion (my trust in her is severely diminished!).

As for the methimazole... yes my new endo said "did you original doctor ever tell you about the long term effects of that medication?".. No, of course not! The new endo was shocked. Glad I am finally seeing someone who seems to care.

[Andros]

Hi everyone.

First I have to say how happy I am to have come across this website! I have been googling thyroid related items for 2 years now since my family and friends have no input and my doctors aren't exactly available 24/7...

Here's my story: I apologize in advance that this will be really long!

26 year old female from Florida. Pretty healthy.

In April of 2009 when I was 24, I was sitting at work and all of the sudden my neck started hurting! It was almost like a stinging pain where my thyroid was. It lasted a few days but then went away so I brushed it off as a random pain. Then a few weeks later, I suddenly had appendicitis! I was completely fine one day, and the next I was so sick I went to the hospital and had my appendix removed. At that time I had bloodwork done and nothing out of the ordinary other than my infection showed up.

In May, I started to get very hot and sweaty when I was working. My job is pretty active (doggie daycare assistant manager) and I was used to running around, but I would be totally drenched in sweat and so hot I thought i would pass out! I thought it was weird, but again didn't think too too much of it. I was thinking maybe since I just had surgery my body was getting back in the swing of things.

Over the month of May, I quickly developed hyperthyroid symptoms (but I was confused by what was happening didn't know anything about thyroid). I was *exhausted*- sleeping 18 hrs a day, literally crawling from the bed to the bathroom at night (somehow i made it through work??), and then when the heart palpitations and shortness of breath started, I got scared and went to the hospital.

After taking my vitals they immediately admitted me and after lots of blood tests told me it was my thyroid. I had to stay for 5 days because my body was so weak. They referred me to an endocrinologist who I have been seeing since then. I had one nodule at that point.

At first she was very helpful, but over time it became harder and harder to get in to see her and she was less and less compassionate at each visit. She said my thyroid levels were still fluctuating and adjusted my methimazole up and down several times over the first year. She had me do routine blood work, and once she had me do a blood sugar urine test. I was feeling a little cruddy that day, and after my Dr. got my results, she called me and told me my blood sugar was 39 at the time of the test and that I was probably very sick and that at 39 I should have been in a coma??

She gave me a blood glucose monitoring device, and every time I took my blood sugar at home, it was pretty normal. I asked if the lab work was a mistake and Doc said no. I was baffled. Dr. then wanted me to have an ACTH stimulation test (this was in October of 2010) to see why my thyroid and blood sugar were out of whack. After a while my thyroid nodule disappeared also.

Unfortunately at that point, my relationship with the doctor reached a breaking point after a very frustrating attempt to schedule the ACTH test.

After that, I continued on the methimazole for a few months. By December I was starting to feel like I was hyper AND hypo...as if it would fluctuate each day! Finally found a new endocrinologist who so far is awesome!

He asked if I have ever had a RAI uptake scan, which I hadn't, and he said unfortunately to get a good picture of your condition, he had to take me off the methimazole for a month and then we could do the scan.

Well....it has been 3 weeks and 6 days. My scan is Monday & Tuesday..thank goodness. I am super sick right now... I am shocked that my hyperthyroidism ramped back up so quickly. I feel almost as bad as I did when I first went to the hospital 2 years ago.

I have been having very bad palpitations, and unfortunately most beta-blockers do not agree with me...they give me anxiety, ironically (i know in most people they reduce anxiety), so I have mostly been enduring the palpitations without meds. Took the week off work and just taking it easy.

I have been having terrible headaches in the middle of the night, and also sporadic nosebleeds. I called my endo and told his staff about it, and they said there wasn't much they could do until the scan. My symptoms have been slowly increasing again... as each day passes, I become more and more ill. It's awful! But you guys know...

So I have been driving my husband nuts with my sicky-ness (he is so sweet about it all, bless his heart) and I just wanted to hear input from others who have dealt with thyroid problems.

My questions are- How do doctors differentiate between Graves and other causes of hyperthyroidism? Has anyone else had nosebleeds and night headaches due to any of these conditions? I know Graves is autoimmune and it made sense to me...first my immune system attacked my appendix, then my thyroid. And to be honest, i have not had a cold or flu in the entire 2 years that my thyroid has been acting up.... It could be me overthinking it, and I'm just going crazy from the internal monologue i've been having since being sick. I wonder what the blood sugar thing is...can thyroid affect blood sugar? Any idea if Graves can last a long time? I was thinking it is a lifetime thing, is that what you guys think/know? For the amount of doctors I have seen I know surprisingly little about this whole ordeal. Sigh.

Hopeful that my scan results will send me on my way to feeling better. Any advice, or info, or personal experiences are greatly appreciated. Thank you!

Hi there and welcome. Good for you finding a doctor who cares. You should have had the RAIU a long time ago. Many reasons but the most important is to look for cancer.

http://www.thyroidmanager.org/Chapter18/18-cancothr.htm

Thyroid running amok does affect the glucose, cholesterol, ferritin, BP and a few other things.

This test would be important for it is the "true" cause of hyper.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.
http://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

As far as Graves' is concerned; Dr. Robert Graves observed in some patients exophthalmos, goiter, pretibial myxedema and thyrotoxicosis. 3 out of the 4 is then called Graves'! How about that? Otherwise it is just hyperthyroid and believe me; either one has no "just" about it.

Autoimmune in nature, it is considered chronic. For life.

Wecome to the board once again. Sorry you had to go off your antithyroid med for RAIU but I sure am glad you are getting it. This doc sounds terrific.

Good luck tomorrow and Tues. and please let us know all about it if you care to share.

[Weasel311]

Andros- thanks for your reply. Is it silly that it's a big comfort to hear from people who actually understand? 'Cause I already feel better. :) I am going to dig out my labs from when I was hospitalized to see what they found, and see if I can get a copy of my original bloodwork from my old endo.

I will keep you guys posted. Again, thanks!!!

[Andros]

Andros- thanks for your reply. Is it silly that it's a big comfort to hear from people who actually understand? 'Cause I already feel better. :) I am going to dig out my labs from when I was hospitalized to see what they found, and see if I can get a copy of my original bloodwork from my old endo.

I will keep you guys posted. Again, thanks!!!

There is nothing in the world as good as being validated. Almost everyone here knows that.

Hope to hear from you soon.

[Weasel311]

Ok everyone, I went and got my results today from the RAIU scan, ultrasound, and new bloodwork.

Ultrasound- Right lobe 4.4 x 1.4 x 2 cm Left lobe- 4.3 x 1.5 x 1.8cm Solid nodule measuring 1.3cm on left upper pole.

RAIU scan- After 6 hours uptake 67.6%, after 24 hours - 78.8%

Bloodwork- TSH - 3rd gen 0.01
T4 Total- 13.2 (normal 4.5-12)
Free t3- 735 (normal 210-440)
T3 total- 286 (normal 76-181)
thyroglobulin antibodies- 38 (normal <20)
thyroid peroxidase antibodies- 965 (normal <35)
TSI- 341 (normal<140)

My endo basically said "You are extremely sick!" (to which I thought...DUH!)
We scheduled the initial consult for the RAI treatment. Just gotta make it through the next few weeks until everything happens and I can hopefully start feeling better. Pretty tired right now, but just wanted to update you guys with the results.

Again thanks for the support and I will check back in as things start rolling. :)

[shomols]

Ok everyone, I went and got my results today from the RAIU scan, ultrasound, and new bloodwork.

Ultrasound- Right lobe 4.4 x 1.4 x 2 cm Left lobe- 4.3 x 1.5 x 1.8cm Solid nodule measuring 1.3cm on left upper pole.

RAIU scan- After 6 hours uptake 67.6%, after 24 hours - 78.8%

Bloodwork- TSH - 3rd gen 0.01
T4 Total- 13.2 (normal 4.5-12)
Free t3- 735 (normal 210-440)
T3 total- 286 (normal 76-181)
thyroglobulin antibodies- 38 (normal <20)
thyroid peroxidase antibodies- 965 (normal <35)
TSI- 341 (normal<140)

My endo basically said "You are extremely sick!" (to which I thought...DUH!)
We scheduled the initial consult for the RAI treatment. Just gotta make it through the next few weeks until everything happens and I can hopefully start feeling better. Pretty tired right now, but just wanted to update you guys with the results.

Again thanks for the support and I will check back in as things start rolling. :)

Sounds like you have a lot going on. What is the RAI treatment? Your TSI is really high. Along with your antibodies. Glad you found someone who is helping you.
Laurie

[Andros]

Ok everyone, I went and got my results today from the RAIU scan, ultrasound, and new bloodwork.

Ultrasound- Right lobe 4.4 x 1.4 x 2 cm Left lobe- 4.3 x 1.5 x 1.8cm Solid nodule measuring 1.3cm on left upper pole.

RAIU scan- After 6 hours uptake 67.6%, after 24 hours - 78.8%

Bloodwork- TSH - 3rd gen 0.01
T4 Total- 13.2 (normal 4.5-12)
Free t3- 735 (normal 210-440)
T3 total- 286 (normal 76-181)
thyroglobulin antibodies- 38 (normal <20)
thyroid peroxidase antibodies- 965 (normal <35)
TSI- 341 (normal<140)

My endo basically said "You are extremely sick!" (to which I thought...DUH!)
We scheduled the initial consult for the RAI treatment. Just gotta make it through the next few weeks until everything happens and I can hopefully start feeling better. Pretty tired right now, but just wanted to update you guys with the results.

Again thanks for the support and I will check back in as things start rolling. :)

Hi! Glad you checked in. Well, yes you are very ill right now. I am going to suggest that you get surgery w/ that solid nodule. Unless of course you have had FNA already and the biopsy was benign, then yes, RAI.

Perhaps you can talk to your doctor about this? For another, I am not sure a solid nodule would uptake the RAI. Are you on a beta-blocker?

[Weasel311]

Hi Andros!

My doc didn't mention the nodule at all, I just saw it in my paperwork. I did have a nodule a while ago when I first became sick and at a second ultrasound it had gone away. I am taking a beta-blocker, and he prescribed me xanax because for me the feeling of anxiety is overwhelming (anxiety due to all the chemicals swirling in my brain/body..not anxiety over the diagnosis or treatment).

I definitely will ask him about the nodule and the RAI treatment. He seemed pretty gung-ho for that route, although he did say I could choose surgery if that's what I felt more comfortable with.

The big problem for now is that I don't have sick pay at my job, and I can't afford to take time off, so I have been working through all of this...ugh! My boss is sympathetic and told me I could be off however much I needed, it's just that I can't afford it.

The good news is that since getting steady with my beta-blockers, my night headaches have mostly gone away and I have not had a nosebleed in a while.

[Andros]

Hi Andros!

My doc didn't mention the nodule at all, I just saw it in my paperwork. I did have a nodule a while ago when I first became sick and at a second ultrasound it had gone away. I am taking a beta-blocker, and he prescribed me xanax because for me the feeling of anxiety is overwhelming (anxiety due to all the chemicals swirling in my brain/body..not anxiety over the diagnosis or treatment).

I definitely will ask him about the nodule and the RAI treatment. He seemed pretty gung-ho for that route, although he did say I could choose surgery if that's what I felt more comfortable with.

The big problem for now is that I don't have sick pay at my job, and I can't afford to take time off, so I have been working through all of this...ugh! My boss is sympathetic and told me I could be off however much I needed, it's just that I can't afford it.

The good news is that since getting steady with my beta-blockers, my night headaches have mostly gone away and I have not had a nosebleed in a while.

It won't make you feel better but so many of us are in dire straits financially myself and hubby included.

Still, we have to keep on fighting and try to make the best decisions possible for ourselves re handling our medical affairs.

I said all that to say, "I do understand!"

Having RAI would keep you at work. I worked the whole time. Perhaps doing this and keeping an eye on things as the years pass would be the best solution for you. However, I still urge you to talk to your doctor about this.

Please let us know and I am keeping you in my thoughts and prayers.