# New, lots of questions...



## tiffdb (Sep 5, 2010)

Hey everyone, 
I have really enjoyed reading this board and learning a lot. I believe that I am having some serious thyroid problems and most likely graves or at least hyperthyroidism. Forgive me, this might be a little lenghty...

19 Months ago I had my second child...about 6 months after that I started to feel awful. Lots of aches and pains in my hips and legs. Really high levels of anxiety that I had never experienced in my life. Lots of loose bowels, going all the time. Constant sinus drainage and headache issues. I had my TSH checked and was told it was fine. I was told I had post partum depression and put on meds. After a few months things started to get better (but never completely gone), and now its starting to get worse again. The loose bowels are back, the leg pains, anxiety/panic. I have a racing heart and went to an ENT for some ear issues and he said that I had an arrythmia and needed to see a cardiologist. My muscles get sore and achey without doing anything abnormal.

I had my TSH, T3 and T4 test and was told it was all normal. I also had the following antibodies checked: thyroid peridoxase and thyroidglobulin. They were both under the range. Are there specific antibodies to test for graves other than these? My understanding is that those are tests for Hashis. But I could be wrong. Also, I had a CT scan on my neck (because of a swollen lymph node) that showed a nodule, and the doc said they were just going to check it again in a year.

So, I am very suspicious of an autoimmume attack on my thyroid because of the timing (my pregnancy) and a family history. But I've been told that my tests are nomal. Is there any chance that more tests can reveal something? Or maybe that this things don't show up on tests in the beginning phases?

I would really appreciate any advice from anyone. Its been a long year of going from doctor to doctor and only getting treatment for symptoms and no one wanting to find out the actual problem.

Thanks so much.


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## lavender (Jul 13, 2010)

Welcome to the boards! Sounds really aggravating! I know it took years for my doctor to connect my symptoms to my thyroid because my tests were all in the "normal" range as well. 
Your symptoms + nodule certainly make the thyroid a pretty obvious suspect.
I would suggest asking your doctors for copies of your lab work and making a file if you don't have it already. This will help you keep track of your own levels and be able to compare your symptoms to what is going on in your body. 
Did they do Free T4 (or FT4) and Free T3 (or FT3)? Sometimes they do other T4 and T3 tests, but these tests are generally more precise. 
TSI tests for Graves Disease. There may be some other blood work you want to have run to check for antibodies as well, but I am not sure exactly what. The nodule does not necessarily mean Graves, and there may be additional blood work to check for other causes. I have Graves and can't guide you much beyond that.
They can also do a radioiodine uptake and scan to check for Graves, and further investigate that nodule. Also sometimes they do a FNA biopsy on nodules. .
You said you have seen a lot of doctors. Have you seen an endocrinologist? If not, I would suggest asking for a referral. They specialize in the treatment of endocrine disorders including thyroid issues.
Best of luck.


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## Lovlkn (Dec 20, 2009)

tiffbd,

Ask for copies of all your tests - within "range" doesn't necessarily mean everything is OK. If you are in high or low range this could be the cause of your issues.

A TSI test can confirm graves disease.

I want to point out if it is your thyroid sometimes you may test "normal" in the beginning as antibodies can shift back and forth so haveing more than one group of TSH, FT-4 and FT-3 is a good idea.

I was diagnosed 7 years after the birth of my 2nd child and they tried for years to make me go onto anti depressants.


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## Andros (Aug 26, 2009)

tiffdb said:


> Hey everyone,
> I have really enjoyed reading this board and learning a lot. I believe that I am having some serious thyroid problems and most likely graves or at least hyperthyroidism. Forgive me, this might be a little lenghty...
> 
> 19 Months ago I had my second child...about 6 months after that I started to feel awful. Lots of aches and pains in my hips and legs. Really high levels of anxiety that I had never experienced in my life. Lots of loose bowels, going all the time. Constant sinus drainage and headache issues. I had my TSH checked and was told it was fine. I was told I had post partum depression and put on meds. After a few months things started to get better (but never completely gone), and now its starting to get worse again. The loose bowels are back, the leg pains, anxiety/panic. I have a racing heart and went to an ENT for some ear issues and he said that I had an arrythmia and needed to see a cardiologist. My muscles get sore and achey without doing anything abnormal.
> ...


Welcome to the board!! I am big on trusting one's instincts. After all, you have owned your body all your life.

The 3 tests you had can indeed come back in normal range and I am glad that the 2 antibodies' tests are below the range. Do be cognizant of the fact that while below, they have made their presence known and do exist. They sometimes wax and wane so it is hard to catch them at their most active stage.

TSI (thyroid stimulating immunoglobulin) would be good. You should have No TSI. Even if below range, they should not be there. If they are, that means hyperthyroid.

Here is a list of suggested labs and a link to look them up. You have had some and some you have not.

TSI (thyroid stimulating immunoglobulin),TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin Ab, ANA (antinuclear antibodies), (thyroid hormone panel) TSH, Free T3, Free T4.

Also, radioactive uptake scan (RAIU); sonograms have limitations.

You can look this stuff up here and more.........
http://www.labtestsonline.org/understanding/conditions/thyroid.html

I always suggest RAIU when hyper is present because hyper and cancer are often bedfellows.

The Frees are better than the Totals.

Here is a place to learn about the lab tests and why some are antiquated.

Understanding thyroid lab tests.....http://www.amarillomed.com/howto

Swollen lymph glands are also suspect for cancer. TPO antibodies if really high are only "suggestive" of Hashimoto's. FNA to look for Hurthle cells indigeneous to Hashimoto's is the only test that I know of that would be certain.

You can look up TPO on that link I provided.

For Graves' you must have exophthalmos, pretibial myxedema, goiter and thryotoxicosis as per Dr. Robert Graves who noted the phenomenom.


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## tiffdb (Sep 5, 2010)

Thanks so much for the responses. 
I had a follow up today on the CT Scan for the swollen lymph node. The node was fine...still large but hasnt' changed. However, now there are "multiple nodules" on my thyroid and a cyst, according to the Dr. who looked at it with me today. In a way its good, I guess it has to get worse before someone will actually do something about it. He said right now the nodules are too small to biopsy and just to do an ultrasound in a month or so. I'm just so surprised at how Dr.'s want to blame these symptoms on anything and everything but thyroid. I have an "enlarged" "multinodular" thyroid and a boatload of symptoms that my hormones are completely out of wack. But its just "anxiety". Funny, that I never had any anxiety the first 28 years of my life. 
Well, I guess I just have to wait until I can get an ultrasound on it and then take it from there. Thanks again for the imput. I appreciate it and really enjoy reading everyone's stories.


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## lavender (Jul 13, 2010)

Sorry to hear you are feeling so lousy and being given the run around. 
It sounds like something is definitely going on with that thyroid. Andros is spot on with testing/blood work. I would honestly print out the list from her, take it to your doc and ask that they do all of it. 
It is really sad that things hove to get so out of control before docs will take us seriously.


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## tiffdb (Sep 5, 2010)

Thanks for the encouragement. I'm off to the cardiologist next week for my heart palps and then off to get a brain MRI for the tinnitus. Of course i'm guessing (and hoping) that its all going to come back normal, because I don't have a brain or heart problem. I have a thyroid problem. 
Really really thanks for the encouragement, and for the chance to read others stories and symptoms. Makes it bearable!! :hugs:


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## tiffdb (Sep 5, 2010)

Okay...more questions for you experts. 

I went to a cardiologist because my ENT freaked out about my pulse rate and irregular heart beat. I had an ECHO, an EKG, and Stress Test. The cardiologist was adamant (without me suggesting anything) that I am hyperthyroid. He did a physical exam (checking for hand tremors, checking my neck, etc). He sent me to an endo. The endo looked over my previous thyroid ultrasound (ordered by my PCP) which suggested a RAIU test. And he said that those are unnecessary. The ENT also told me that. What is the deal with that? Should I have that test done or what?

The endo is ordering a bunch of labs which will probably come back normal.

Also, curious about symptoms...does anyone experience sometimes a lift in their symptoms? It seems to come in waves. I will feel a little better for a few weeks and then I'll crash and feel awful for a few weeks. I am kind of bummed because right now I'm not feeling as bad as I was 1-2 weeks ago, which makes me think that my blood work isn't going to be as bad. Should I get my blood work done when I'm feeling my worst?

Thanks for all the advice!! And for putting up with my silly questions.


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## Andros (Aug 26, 2009)

tiffdb said:


> Okay...more questions for you experts.
> 
> I went to a cardiologist because my ENT freaked out about my pulse rate and irregular heart beat. I had an ECHO, an EKG, and Stress Test. The cardiologist was adamant (without me suggesting anything) that I am hyperthyroid. He did a physical exam (checking for hand tremors, checking my neck, etc). He sent me to an endo. The endo looked over my previous thyroid ultrasound (ordered by my PCP) which suggested a RAIU test. And he said that those are unnecessary. The ENT also told me that. What is the deal with that? Should I have that test done or what?
> 
> ...


I feel you need the RAIU for many reasons. The most important one is Cancer; especially since you have lymph node involvement.

Yes; the hyper does wax and wane and each time it comes back worse.
I remember so so well. Aaaaaaaaaaaaaaaargh!!

Lavendar told you about the TSI; you must get that test. If you have any at all, you have hyper. The healthy person should have no TSI.

Ultasound is not always the best course for thyroid. Insist on RAIU.

Let us know.


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## tiffdb (Sep 5, 2010)

Thank you for your response!! You don't know how much I appreciate the encouragement and advice!! I'm going to work on getting the RAIU done. And checking into the TSI. I know I'm getting antibodies checked, but I doubt that one is included.

Again, thank you so much. This is such a difficult journey and good help is hard to find. :hugs:


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## lavender (Jul 13, 2010)

Sounds to me like the cardio guy had it right on the goiter! he he he
Tremors, heart palps, anxiety are all signs of hyperthyroid, and if this goes on untreated, it could permanently damage your heart. Sounds like you're not there yet. Thank God. I had no idea how serious my thyroid issues were, even after two days in a hospital bed. It was only after I read paperwork from my endo that told me my condition could be FATAL and seeing the look in my PCP's eyes when I went back in for a follow up that I started to take it seriously. 
Keep on that endo, he is working for you! If he won't take you seriously, find someone who will! I will repeat what Andros said. Insist on the RAIU. My endo told me ultrasound was useless.


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