Newly Hyper Diagnoised - First Endo Doc Appointment Tomorrow

[Ludiak]

Last week I had what I thought was a panic attack - difficulty breathing, weight on my chest, and rapid heart beat. The next day I felt better but still sick so I went to the doctor. I saw an internist who did an EKG and didn't find anything wrong. On a whim she suggested we do a blood panel and two days later she called to tell me that my labs came back with me being "hyperthyroid and elevated liver" which she said is probably because of the hyperthyroid. Outside of that, I have no other information.

18 months ago, two weeks after my dad passed away I was diagnosed with colitis, which is also an auto immune disease and told by that Harvard trained doctor that I'd live with the disease the rest of my life. The doctor told me that it was just a coincidence that my symptoms appeared so soon after my dad's death and no other treatment would help. After a bit of research and a few months of acupuncture, I was totally healed - no symptoms and no medications at all.

Since my dad died I have noticed that I don't handle stress very well. The day before my panic attack I had a argument with my teenage son and he ran out of the house. I was able to find him later that night and we are fine but I can't help but wonder if the stressful episode is what triggered my thyroid to over react. Could it just be temporary?

I am a very active person and do CrossFit several days a week, eat well and although fit, am not thin in any way. I have no lost any weight.

My only main symptom since the panic attack is a rapid heart rate. I do feel a bit more emotional too.

Tomorrow I have an appointment with the Endocrinologist to learn more. Based on what I've shared, how do I convey this information to the doctor so that she doesn't jump to conclusions. Is it possible that my levels could go back to normal? I know I need a new route to focus my stress and I'm exploring those ideas but I'm not keen on popping pills in reaction to one event.

What questions should I bring with me? What specifics do I need to know about? What tests can I insist on taking?

Any help is greatly and sincerely appreciated,
Lia

[4slenderthread]

Hello Lia!

   Personally I thought you were quite eloquent here in your post. This is exactly what you should say to the doctor. Just write down your concerns and questions in advance so you can take them with you!
   Back in 98' I was visiting a friend that had rented a condo on the coast and I began to feel rather odd. I just didn't feel like myself. I suffer from panic disorder so I take klonapin. I took an extra pill here and there because I thought it was anxiety. After @ 48 hours, I was more than ready to head home. I had my daughter drive while I continued to feel worse and worse! It felt as though my tongue was swelling, I had trouble swallowing, I became hyper sensitive visually. I ended up having to stare at my feet for about 4 hours because I kept over reacting to everything I saw!
   By the time we got home the body jerking began. Several times a minute my head would jerk uncomfortably. My hands trembled .... I felt so terrible inside! On top of all this, my doctor had left a message on my phone but I was certain that something was terribly wrong with me, so I didn't call her back. The following day the jerking was even worse and my doctor called again. She told me that my thyroid had stopped working and I would have to take a synthetic medication. I hung up the phone and broke down and cried like a baby. I was so-o relieved! But I'm not a crier, so I DID get emotional, believe me! I took the synthroid for approximately a year ... at some point my doctor re-tested me and my thyroid began working again! There is no physician I have seen that has ever even heard of something like that happening! Bizarre.
   I told you that story because I wanted you to know that there are always medical 'miracles.' Something that shouldn't have happened but did! I believe you have definitely been through a lot of stress, but I believe it just happens to be a consequence that you ended up with these physical issues. I lived in enormous stress for many, many years and yet I had no physical manifestations of that stress. Perhaps I was just fortunate, who can say ...
   You will be seeing a specialist. I have no doubt that the proper tests will be done for you. Again, regarding questions to ask -- I say go with the same ones you asked here and add whatever additional ones pop into your head in the meantime! You are doing just fine, congratulations on being so good to yourself, re: the crossfit and eating properly!! I wish the very best for you Lia! Take care ... :-)

[Barb135]

Colitis is inflammation of the colon; there are a number of types of colitis and not all are autoimmune.  The autoimmune colitis is Crohn's disease, so if you weren't diagnosed with Crohn's, your colitis wasn't autoimmune. Here's a good link: http://www.emedicinehealth.com/colitis/article_em.htm  Even Harvard trained doctors jump to conclusions and/or make mistakes, whether it be from lack of proper testing or what he learned in med school......

Whether or not your hyperthyroidism will go away, depends on the cause.  At some point, you will need to be tested for thyroid antibodies.  There are 2 autoimmune thyroid diseases, that can present hyperthyroidism.  I'm sure you know that once you have a true autoimmune, you have it for life, even if the antibodies go into remission, and symptoms go away.

The 2 diseases you could have are  

1)  Graves Disease, which is most often associated with hyperthyroidism.  The definitive test for Graves Disease is Thyroid Stimulating Immunoglobulins (TSI).

2) Hashimoto's Thyroiditis, which is most often associated with hypothyroidism, but in the early stages, it's not uncommon to have periods of hyperthyroidism, as well.  The antibody tests for Hashi are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TGab)....... you need them both, because some people have one or the other, some have both, so if you only test for one and it's negative, you could be left undiagnosed.

The end result of both of these diseases is usually hypothyroidism... with Graves, the thyroid often has to be removed or treated with RAI; anti-thyroid medications may work for a while.  With Hashi, the antibodies continuously destroy thyroid tissue until it can no longer produce hormones. Either way, you will end up on some type of medication for it.

It's also common with Hashimoto to have thyroid nodules, which can leak hormone independently of the thyroid.  

The best way to convey your message, is just like you put it here... tell the doctor how you feel.  Having hypothyroidism caused by Hashimoto's (marked by periods of hyper), I can tell you straight up - there are a lot worse things than popping a little pill every day......

The tests you need to ask for are the antibody tests mentioned above (TPOab, TGab, and TSI).  In addition, you need the entire thyroid panel, which consists of TSH, Free T3 and Free T4........  

TSH is a pituitary hormone that signals the thyroid to produce more, or less, thyroid hormones.... in a perfect world, the thyroid would do exactly as it's told, but unfortunately, it doesn't always behave and will produce too much or too little hormones.  

Free T3 and Free T4 are the actual usable thyroid hormones.  The thyroid mostly produces FT4, with little FT3.... FT4 is considered a storage hormone, which must be converted (mostly by the liver) to FT3, which is then used by the individual cells to manage metabolism, heart rate, body temp, cholesterol levels and more.

Many doctors, including endos do not test FT3 and FT4.... they try to manage thyroid issues with TSH, only.... if the doctor does that, s/he will keep you sick.

Always be sure to get a copy of your labs, every time you have them done.  Doctors in the U.S. are obligated, by law, to provide a copy upon request.  I never leave my doctor's office without a copy.  My labs have become a running record of my thyroid condition.

Once you see the endo and get copies of your labs, you can post them here (make sure to include reference ranges, which vary lab to lab and must come from your own report) and members can better assess your testing/treatment.

BTW - I didn't handle stress well after my dad died either. Anxiety/panic attacks can be associated with either/both hyper and hypo thyroid.

[Ludiak]

I can't tell you how much I appreciated both of your responses. It helped me this morning when I talked to my endocrinologist.

I was diagnosed with Thyrotoxicosis NOS w/o crisis. She wants me to get an thyroid uptake with scan soon and told me to start taking 5mg once a day of Tapazole.

She said I'm considered "mild".  My labs are as follows:

TSH is 0.011
T4 Free (Direct) is 2.01

Today she ordered more blood work which included another TSH, T4 Free, and I don't recall what else. I know I asked for the antibody test and she said it wasn't necessary since I'm hyper not hypo.

One thing I thought was odd was that she handed me my order for the scan and didn't give me a list of doctors or anything to refer to. It's taken all day to find someone to do it. I thought that was a bit lazy. Otherwise she seemed knowledgeable. She wasn't specially sympathetic and when i mentioned my episode with colitis and the results I got form acupuncture she didn't say much.

I had an appointment with my acupuncturist yesterday and she said she wasn't sure how much help she could offer, which surprised me. I guess she knows her limits?

The good thing is that I'm feeling better today after seeing the Endo and although I still have a rapid heart beat, I feel okay. I cannot wait to get back into the gym. The endo suggested I wait until I get the rapid heart rate under control before I do anything in the gym and I agree with that.

Again, thank you both for you words of encouragement. I really appreciate it!
Lia

[Barb135]

Sounds like your appointment wasn't too bad.  

I do hope she ordered a Free T3, with that TSH and FT4.

I disagree with her about the necessity of doing the antibody tests.  Just because you are hyper, doesn't mean you don't need antibody tests.  You could have either Graves or Hashimoto's and without the proper testing, you'll not know.  She's probably assuming that since you are hyper, you have Graves, but that's not necessarily true, since some people with Hashi have periods of hyper, as well.

While some people have had slight success with acupuncture, I think that will be limited, because acupuncture won't be able to stop the activity of the antibodies - if you have them.