[McKenna]

Hi everyone,
I joined this forum b/c I am having a lot of hyper symptoms, but my endo thinks I have Hashimoto's. The last three months have been horrible, and I don't feel any closer to a resolution.
I began with hypo symptoms for a few months starting last year into this one. I didn't recognize them at the time, but looking back I started to get very tired, no evergy, not much desired to do the things I used to. I also had a surgery in Feb. and a few illnesses that I feel weakend my system.
Then in April, I started to have major anxiety and panic. It came out of the blue and I thought surely I was suddenly losing my mind. I also had diarrhea, heart palps, shaking, no appetite, my fingernails grew like crazy, insomnia, I got really weak, hives, a weird rash on my lips, and lost about 10 pounds. This went on for a few weeks, where I felt ok some of the time. I could not figure out what happened and went to the doctor. He ran every test under the sun and my TSH came back high. This was the first indication of a thyroid issue.

Here are my thyroid labs from 5/8:
T4 Free 1.27 ng/dL 0.82 - 1.77
T3 Free 3.5 pg/mL 2.0 - 4.4
TSH 5.330 uIU/mL 0.450 - 4.5

My doctor said I might have Hashimoto's and sent me for antibody tests:

Then these from 5/13:
TPO antibody 198.30 IU/ML range: 0.00 - 9.00
Anti-Thyrgbl <0.9 * f
Anti-Thyrglb AB reference Range: < 4.0 IU/ML
Legend: * = Abnormal.

He also sent me for an uptake scan and a referral to an endo.
This is what is written on the uptake report from 5/21:
The patient presents for evaluation with elevated TSH.
Following the oral injestion of 244 microcuries of I123, 24 hour uptake of 29.1% was calculated which is within the extreme upper ranger of normal in our laboratory.
Static images reveal asymmetric enlargement of the right thyroid lobe compared with the left with homogeneous type uptake identified.
Impression: Asymmetric promininence in size of the right thyroid lobe compared with the left with homogeneous uptake with 24 hour radioiodine uptake within the extreme upper limits of normal. Suggest consideration of thyroid ultrasonography for further evaluation of the thyroid asymmetry.

I saw the endo on June 1 and he diagnosed me with Hashimoto's and hashitoxicosis. He put me on 25 mcg of synthroid and sent me for an ultrasound. The ultrasound came back with a nodule and they recommended biopsy. I had a FNA and the results came back inconclusive, but with "rare fibrous fragments". I am scheduled for a TT in September and they will send the nodule away for testing.

In this time, I had started to calm down a little. This was before going on synthroid. The first two weeks on synthroid were uneventful, but about one month into it, I felt those extreme hyper symptoms again. It was almost as bad as the beginning of April. I called my endo and he had me go for bloodwork and I insisted on a TSI test from my family doc (the endo did not think it was necessary) I was also put on Inderal for the crazy heart palps.

These were my labs when I felt very hyper a few weeks ago 6/29:
TSH 3.150 uIU/mL .450-4.5
Free T4 1.17 ng/dL .82-1.77
Free T3 2.6 pg/mL 2.0 - 4.4
TPO 269 IU/mL 0 - 34

And my TSI came back 103 range <125

The endo took me off synthroid for one week and then put me on Armour 15mgs every other day. He also did labs on 7/15 which came back:
TSH 3.220 .450 - 4.5
FT4 1.21 .82 - 1.77
FT3 2.8 2.0 - 4.4

I was ok on the Armour for one week, then the hyper symptoms are coming back. Sweating, anxiety, nervous and feeling keyed up, frequent bowel movements, internal tremors feeling, startled by noises. I called the endo to ask if I can go back off the Armour for a week. Im waiting to hear back from him.

My questions for you with Graves' experience are these:
1. I've only really presented with hyper symptoms since April, despite a high TSH. Is is possible my labs are not accurate b/c of the binding and blocking issues of some antibodies? I am being treated with Armour b/c of my TSH. My symptoms are hyper and my uptake and TSI show hyper issues. And a high TPO which keeps going higher.

2. I read that TSI is not present in "normal" people. Or to a very small degree - less than 2%. When I pointed out my TSI of 103, my endo said it was below 125 so I did not have Graves' and was fine. But can I feel hyper from the elevated level? Am I on my way to Graves'? Or is it possible that level does get up above 125 at times but I am not tested during those times? I do not have the skin condition (sorry, I can't remember the correct name) but I do occasionally have a pressure feeling behind my eyes and across the bridge of my nose. It's usually at the same time as a headache around that same area.

3. If I am hyper, my endo has me on thyroid replacement. Is this dangerous for me, especially since I'm now on Inderal for the heart palps (which have calmed down).

I am having my throid out in September, but I don't know what to do in the meantime. And I've been told by someone to make sure I get sski drops for the surgery to prevent dumping. But my endo does not think I'm hyper at all, so I doubt he will prescribe them. His suggestion (several times) was for me to go on Lexapro for the anxiety. I didn't have this a few months ago and I know it's from my thyroid issue. If we can only figure out what exactly is going on.

I really appreciate any information you can share with me. I apologize for the length of this.

[mmztcass]

Hi and welcome:

Any TSI number is a positive for Graves' Disease. One gal I knew with a thyroid disease had a TSI of only a 2 and she had GD.

I'm trying to see if you have had the TRAb (Thyroid Receptors Antibodies) test done?

Many hypO/hypER symptoms cross over with each other making one think he/she is hypER and end up being hypO instead.

Have you tried working with diet such as avoid raw goitrogen foods to help raise your Free Ts to perhaps in the mid ranges to see if you feel your best there at?

Getting a small notebook to record what foods/drinks 'trigger' your symptoms may be helpful. Look here at Thyroid 101 and read about the diet and generally what things to avoid.

You may be in the period of swinging one way hypO to another way hypER before it finally gets settled with whichever antibodies is currently active for you. Unfortunately Hashi's can be difficult to control and can drive so many of us over the edge with the symptoms.

{{{hugs}}} :blink:

[McKenna]

mmztcass, on 22 July 2010 - 01:38 PM, said:

Hi and welcome:

Any TSI number is a positive for Graves' Disease. One gal I knew with a thyroid disease had a TSI of only a 2 and she had GD.

I'm trying to see if you have had the TRAb (Thyroid Receptors Antibodies) test done?

Many hypO/hypER symptoms cross over with each other making one think he/she is hypER and end up being hypO instead.

Have you tried working with diet such as avoid raw goitrogen foods to help raise your Free Ts to perhaps in the mid ranges to see if you feel your best there at?

Getting a small notebook to record what foods/drinks 'trigger' your symptoms may be helpful. Look here at Thyroid 101 and read about the diet and generally what things to avoid.

You may be in the period of swinging one way hypO to another way hypER before it finally gets settled with whichever antibodies is currently active for you. Unfortunately Hashi's can be difficult to control and can drive so many of us over the edge with the symptoms.

{{{hugs}}} :blink:

Thank you for your reply. Do you have medical research that states any TSI number is positive for Graves? My endo does not think it's a problem as my number is below 125. I specifically told him that I had read no one should have TSI in their blood and his answer was "who told you that?!". He knows I research a lot but he doesn't put any stock in what I tell him. I would love to show him information from another endo or something, so he will believe me and begin to treat me by something other than my TSH level. (which shows I'm hypo) Even my family doctor said I do not have Graves b/c my TSI level was not 125 and my THS was high. I need information to show them.

Is there any other reason why a TSI would be up? My endo originally told me that I could be swinging from hyper to hypo with the Hashi's, would TSI show that? Or is it specific for Graves'?

No, I have not tried anything with foods. I will look up the diet information.

I suppose this sounds silly, seeing as how I'll be getting my throid out in September, but I really feel horrible and I need to know what is wrong with me. I don't even know how to dose my meds, b/c I am hyper one day and feel normal the next. I'm just afraid I'm making myself worse with the thyroid hormones, if I have Graves'. Wouldn't that make me more hyper?

I though of another question. Since my radioactive uptake came back high as well, doesn't that also show hyper? Or Graves?

TIA!

[mmztcass]

I research too. Unfortunately my computer crashed awhile back which I lost a lot of info saved.

Here's one link you can try:

http://thyroid.about.../bloodtests.htm

Then you can try this link and do a search:

http://www.thyroidmanager.org/

This is from our own Thyroid 101- read down at the bottom:

http://www.livingwit...ts-information/

If you have copies of your labs, put them in a post and we'll help you decipher them. If you get your thyroid out in a couple of months, you'll need to know how to read your labs as to how you are feeling for the replacement med you will be taking. If you don't know how to read 'em, now is a good time to start.

{{{hugs}}} :)

[cdsh3764]

The TSI section of mm's first link provides a clue about your endo's Dx - here's what I consider the most
important sentence of that section as it applies to you:

Less commonly, some people with Hashimoto's disease also have these antibodies, and this can cause periodic short term episodes of hyperthyroidism.


Your labs do indicate hyPO - TSH greater than 2 is considered suspect for hypo....your more recent FreeT4 and FreeT3 are under mid-range
which is also a sign of hypo. Thyroid meds dosing is based upon our FreeT4 levels so that explains why your doctor tried synthroid/Armour.

The TSI antibodies you have could well indeed be the cause of your hyper symptoms as indicated above......I feel for you.....Hashitoxiscosis
seems to be the most difficult "version" of thyroid disease out there due to the vacillating symptoms - very hard to treat.

Sounds like you've made a good decision for yourself with the TT.

[McKenna]

Thanks for your replies.

5/8 labs. This is around the time I felt very hypER
T4 Free 1.27 ng/dL 0.82 - 1.77
T3 Free 3.5 pg/mL 2.0 - 4.4
TSH 5.330 uIU/mL 0.450 - 4.5

5/13: still feeling hypER
TPO antibody 198.30 IU/ML range: 0.00 - 9.00
Anti-Thyrgbl <0.9 * f
Anti-Thyrglb AB reference Range: < 4.0 IU/ML
Legend: * = Abnormal.

Then I had referal to endo and he put me on 25mcg of synthroid on June 1.
After one month on it, I had another episode of feeling extremely hypER. Insomnia, heart palps, tremors, etc.
Went to the endo and he took me off synthroid for one week.
6/29:
TSH 3.150 uIU/mL .450-4.5
Free T4 1.17 ng/dL .82-1.77
Free T3 2.6 pg/mL 2.0 - 4.4
TPO 269 IU/mL 0 - 34

He would not do a TSI test, so I had my family doc order one.
TSI came back 103 range <125

Doc put me on Armour, 15 mgs every other day. He did not think a TSI of 103 was a problem. He said as long as it's below 125 I do not have Graves'.

I felt better after being off the synthroid and the first week on Armour, but I'm wondering if that's b/c the Armour had not had time to build up yet.

7/15 : A few days on Armour.
TSH 3.220 .450 - 4.5
FT4 1.21 .82 - 1.77
FT3 2.8 2.0 - 4.4

Now I'm back to feeling hyper after having been on Armour for two weeks and I just had a blood draw for an appointment tomorrow.

[cdsh3764]

Your labs would still be considered somewhat hyPO based upon the explanations I gave in my previous post.

I also explained that most people feel/function best with FreeT4 levels in the upper third of the range and
Free T3 levels at mid-range. That might not apply to you and you could very well feel better at a "place"
lower than mid-range.

Doctors should NOT be dosing based upon TSH.....they should be dosing based upon symptoms as well as
FreeT4 & FreeT3 levels.

This applies no matter what disease a person might have.....Graves', Hashi's, whatever.

However, I've read about perplexing situations before and, quite honestly, having hyper symptoms with
hypo labs would fall into that category IMHO.

You just might want to contact Elaine Moore about your situation. She is the author of "Graves' Disease -
A Practical Guide", many online articles about all thyroid diseases as well as health-related articles and books.

She maintains a website with a Q&A Forum in which registered users can submit questions and she answers
directly.

Her site is HON-certified....quite recently, a doctor asked Elaine for advice about her perplexing thyroid situation.
She is quite the valuable resource - she guided many of us on our journeys with thyroid disease.

Here's a direct link to Elaine's Q&A Forum

http://elaine-moore....ds/Default.aspx

Please realize that it sometimes takes Elaine a few days to reply to questions since she is now retired from
30+ year career as a medical technologist and is traveling and writing books.

If you decide to contact Elaine, it would be great if you share the results here.

Best of luck to you~

[mickey1971]

hi,

I have had hashimoto since 30 years ago more or less it was diagnosed just a couple of years ago and with hashimoto disease you will have hyper phases. That was the reason mine never was detected because symptoms never were the same all time and mine was mild. I was able to manage those issues myself even when i knew something was wrong and i played with those symptoms. I always looked for some medical help but it was quite difficult to diagnose and i was focus on other issues and i never worried too much about the thing. I had other priorities. My problems began when i wanted to sort out those weird symptoms that i had for a couple of decades and looked for further medical help, they misdiagnosed the thing, so later was a real mess.

Advice: for some reason when you get worried, anxious, looking for answers you will get more anxious and i do not know why thyroid activates, it is just hormones. So, take it easy, I DO know you do not feel fine but you will have a TT, so it means you wont have those hyper & hypo symptoms and later you will feel quite better. It takes time that those T4 pills take over thyroid work, mine was over one year and i was given too much hormone when i started the treatment and my tsh was fine first for some months and decrease to near 0 levels later and i changed endo around 3 times. After 2 years taking T4 i feel fine, quite better, not as i would like to be but if i push myself i feel my thyroid getting swollen. I try to take things a little bit calmer. I do not have nodules, so i need to stick to these weird symptoms but i am able to manage it again on my own. My tsh is around 3, not the best as i would like to be but my T4 is ok.

I think you have Hashi as well, even with a TSH around 3,4,5 you can have hyper symptoms.

Good luck.