# Nightmare tsh .001 to 25 =(, need help



## danie17075rm (Sep 26, 2010)

I have had hashimotos for a few years. I also have a goiter. Everything has been semi controlled for the past few years (between 3-4 which my doc is happy with, but I not ideal). Six weeks ago I was eating a salad and I couldn't breathe. My heart started racing and I went to the emergency room. They said I was having a panic attack, but found out my TSH was .001. They put me on toprol for the heart racing and took me off my thyroid meds. Two weeks ago my TSH was .2. My endo told me to come back in a month. This whole time I have been suffering extreme anxiety and panic. It appeared a little better for a few weeks until a few days ago when everything happened horribly again. Of course it was Friday so I went to an urgent care. I just found out now that my TSH is 25. It has went from .2 to 25 in a month. The doc there told me not to take my thyroid meds because she didn't want to cause a thyroid storm. Now I am freaking out and panicking more. At 25, shouldn't I have medicine? Should I go the e.r. for the fifth time in the last 6 weeks. I am lucky to get "you are fine" out of my endo, and "you are crazy" out of my family doc. My insurance does not cover anyone else. I don't know what to do anymore, and I'm so scared and tired of dealing with panic. This doc also told me I should probably get my thyroid out. Does anyone have any advice? Thanks so much.


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## usmc4myson (Sep 26, 2010)

wow. I feel your frustration and bewilderment! I think of the adage about the squeaky wheel...and how hard it is to squeak sometimes!! The ER can make you feel like a psychosomatic lunatic who is wasting their time...and it makes you second guess even going. The thing is, it's your airway we are talking about here. And your heart. Two very important things to always protect and take care of. I know it gets so frustrating. I've been there.

I pray that you would have the wisdom to know what to do...and that your doctors would have wisdom about treating you. 
hugs2
~Amy


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## danie17075rm (Sep 26, 2010)

Thank you Amy, I could really use the prayers.


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## GD Women (Mar 5, 2007)

I know of Hashis who had their thyroid removed to stop the Hashi swing and to go totally hypo. That way it leaves them with only one thyroid issues to deal with and worry about - hypothyroidism.

My last test TSH was .008 with FT-4 out of Labs as well, however, I am still on meds. although lower does. Just did labs last Wednesday so will find out if lower dose worked.

Your doctor is just being cautious so trust. Your next labs will tell a lot so hang in there and good luck.


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## Andros (Aug 26, 2009)

danie17075rm said:


> I have had hashimotos for a few years. I also have a goiter. Everything has been semi controlled for the past few years (between 3-4 which my doc is happy with, but I not ideal). Six weeks ago I was eating a salad and I couldn't breathe. My heart started racing and I went to the emergency room. They said I was having a panic attack, but found out my TSH was .001. They put me on toprol for the heart racing and took me off my thyroid meds. Two weeks ago my TSH was .2. My endo told me to come back in a month. This whole time I have been suffering extreme anxiety and panic. It appeared a little better for a few weeks until a few days ago when everything happened horribly again. Of course it was Friday so I went to an urgent care. I just found out now that my TSH is 25. It has went from .2 to 25 in a month. The doc there told me not to take my thyroid meds because she didn't want to cause a thyroid storm. Now I am freaking out and panicking more. At 25, shouldn't I have medicine? Should I go the e.r. for the fifth time in the last 6 weeks. I am lucky to get "you are fine" out of my endo, and "you are crazy" out of my family doc. My insurance does not cover anyone else. I don't know what to do anymore, and I'm so scared and tired of dealing with panic. This doc also told me I should probably get my thyroid out. Does anyone have any advice? Thanks so much.


Hello and welcome to the board!

Have you ever had FNA (fine needle aspiration) on any of the nodules? Have ever had a radioactive uptake scan (RAIU) or at the very least a sonogram?

Have you had any of these antibodie's tests?

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.

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


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## chopper (Mar 4, 2007)

If that sort of business is going to continue, I would opt for surgery. At least with no thyroid you can control your hormone levels with meds.....assuming your pituitary is working ok. I would want the pituitary checked out first but there are no meds that will control your out-of-control thyroid. You'll only end up dealing with these crazy ups and downs forever until you kill the thyroid off somehow either with RAI or surgery.


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## danie17075rm (Sep 26, 2010)

Thanks for all the answers. I am normally hypo, but for whatever reason the medication became too much and I went hyper. The endo took me off of the levothyroxine when I went hyper and now I've swung back to hypo. Maybe it is just a dosage problem, but a regular doctor this weekend scared me by telling me that I can have a thyroid storm if he puts me back on my thyroid meds. My t3 and t4 were normal, so apparently it has something to do with the pituitary. I don't want a thyroid storm!!! I had no idea that was possible when you were hypo normally. At this point I just want to be able to live my life normally, and as you said it would be nice just to worry about hypo rather than this hypo/hyper stuff. I have had the antibodies tested and a few years ago they were high. I had them tested a few months ago and they were normal so that was kind of confusing as that is when all this stuff happened. Thanks for all of your answers. It's nice to talk to others that understand.


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## Andros (Aug 26, 2009)

danie17075rm said:


> Thanks for all the answers. I am normally hypo, but for whatever reason the medication became too much and I went hyper. The endo took me off of the levothyroxine when I went hyper and now I've swung back to hypo. Maybe it is just a dosage problem, but a regular doctor this weekend scared me by telling me that I can have a thyroid storm if he puts me back on my thyroid meds. My t3 and t4 were normal, so apparently it has something to do with the pituitary. I don't want a thyroid storm!!! I had no idea that was possible when you were hypo normally. At this point I just want to be able to live my life normally, and as you said it would be nice just to worry about hypo rather than this hypo/hyper stuff. I have had the antibodies tested and a few years ago they were high. I had them tested a few months ago and they were normal so that was kind of confusing as that is when all this stuff happened. Thanks for all of your answers. It's nice to talk to others that understand.


What antibodies were tested a few years ago? And that would not negate the fact that you need current antibodies' tests anyway. TSI would be very important.

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.

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

Radioactive uptake scan would be a good idea also.


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## danie17075rm (Sep 26, 2010)

I posted my lab results in the a different post of "posted labs, am I crazy", thanks so much for all the answers.


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## drahaskell (Oct 1, 2010)

Your symptoms and TSH fluctuations are not that unusual for someone with Hashimoto's. Part of the problem is that thyroid hormones are leaking from your thyroid due to thyroid inflammation and causing high thyroid hormones in your blood stream. When this is combined with your thyroid medication you'll then have too much circulating thyroid hormones. This causes your TSH to plummet.

When TSH goes way down then your thyroid's production of thyroid hormones declines and then the TSH starts to increase. It's a real live roller coaster of symptoms and you may feel like you are going crazy but you are not.

Unfortunately most physicians are confused by Hashi's and there's no standard of care except for writing a prescription for thyroid medication.

I'd like to invite you to a free webinar on Hashimoto's which I'm hosting. I'm a naturopathic physician with 27 years of experience along with publishing two books on thyroid, one specifically on Hashimoto's. I will be reviewing all the medical research and showing the primary causes of Hashimoto's, effective nutrients for reducing thyroid inflammation and thyroid antibodies and how to use thyroid medication in a way that prevents the roller coastering symptoms which you are having.

I hope you can join me. Simply visit the site HopeForHashimotos.com to learn more.

All the best,
Dr. Haskelll


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## chopper (Mar 4, 2007)

Dr. Haskell,

If you are interested in working on something together let me know. We have plenty of sick and frustrated members here who would probably love to pick your brain if given the opportunity.

Personally, if I can have just one question answered it would be: Does high TSI immediately confirm you with a Graves diagnosis or is high TSI in ADDITION to high TPO and TG Ab's only confirm a bad case of Hashimotos and does Hashitoxicosis exist in your opinion?


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