# having crazy symptoms :(



## nichristeve (Sep 7, 2012)

Hi Everyone...haven't been on here in months, but hoping for a little help . 
Just a quick re cap....Had the right side of my throid removed in July due to suspicious nodules. When I was in th OR patholgy came back negative, so they left the left side. Unfortunately, the final path was papillary carcinoma. My endo said to leave the left as the surgery was too invasive and they cancer was microscopic and will never kill me. This was all with my ENT, so I followed up with an endo. She agreed that I should leave the left side alone. We have been trying to regulate my TSH ever since. She had said my initial labs(prior to surgery) were indicative of Hashi's. Post op, my tsh was 5.5. she said with Hashi's and with thyroid cancer, the goal is to keep my tsh ALMOST hyper....and my T4 on the high end of normal. OK, I think...shes the doc. She came highly recommended by numerous ppeople. 
I started on 25 mcg...did hardly anything...then 50....then 75....then 75 every day but on sundays take 2. Last week I saw her, and my TSH was still 1.32. I don't know what my T4 was. so she increased me to 100mcg. 4 days into takingthe 100 i had a very strange reaction. I felt this weird feeling in my head....then a few minutes later I could feel my pulse in my hands and head. Then my heart started racing. My husband took by blood pressure and it was 184/96. After only about a minute or two, my heart rate calmed down. The rate was regular, but fast...about 160. I did have atrial fibrillation 14 years ago...so anything with my heart freaks me out. after my heart calmed down, I started to shake. I was not cold at all....I was having involuntary muscle spasms, especially in my legs. They lasted for about 5 minutes. I was thinking of going to the hospital, and they subsided. 
after this, I read that too much levothyroxine can cause these symptoms. 
This was Saturday, I call my dr. Monday....of course I can't talk to her...have to talk to her assisstant who relays the message. She gets back to me on Tuesday and says the doc says to take 100mcg a day and skip Sunday. Now this strange thing happened to me 4 days after starting the 100! So, I am losing faith in my endo to say the least. I did make an appt with my cardiologist because I have not felt good all week. weird feelings in my head, mild tightness in my chest at times. My BP has been ok....was 150/67 yesterday. High on the systolic side. I am afraid to take the 100 again, have been taking 75 mcg levothyroxine. 
What do you all think of this? Thank you so much for any input! 
Suzanne


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## Octavia (Aug 1, 2011)

Speculation here, but here are my thoughts... if you have Hashi's, your remaining thyroid tissue is not stable, so it is going to be more difficult for you to maintain that balance of relatively high Free T4 and low TSH. Sometimes, your own tissue is going to put out more hormone, and sometimes, it will put out less hormone. Sounds to me like you've gone hyper.

If I were you, I might get second opinion on removing your remaining lobe. In the long run, it's going to be far easier to manage your hormones...in my opinion.


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## joplin1975 (Jul 21, 2011)

Some times its hard to find that balance between a really suppressed TSH and being full on hyper.

It would be really helpful to have your free t4 AND free t3 tested.


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## Andros (Aug 26, 2009)

nichristeve said:


> Hi Everyone...haven't been on here in months, but hoping for a little help .
> Just a quick re cap....Had the right side of my throid removed in July due to suspicious nodules. When I was in th OR patholgy came back negative, so they left the left side. Unfortunately, the final path was papillary carcinoma. My endo said to leave the left as the surgery was too invasive and they cancer was microscopic and will never kill me. This was all with my ENT, so I followed up with an endo. She agreed that I should leave the left side alone. We have been trying to regulate my TSH ever since. She had said my initial labs(prior to surgery) were indicative of Hashi's. Post op, my tsh was 5.5. she said with Hashi's and with thyroid cancer, the goal is to keep my tsh ALMOST hyper....and my T4 on the high end of normal. OK, I think...shes the doc. She came highly recommended by numerous ppeople.
> I started on 25 mcg...did hardly anything...then 50....then 75....then 75 every day but on sundays take 2. Last week I saw her, and my TSH was still 1.32. I don't know what my T4 was. so she increased me to 100mcg. 4 days into takingthe 100 i had a very strange reaction. I felt this weird feeling in my head....then a few minutes later I could feel my pulse in my hands and head. Then my heart started racing. My husband took by blood pressure and it was 184/96. After only about a minute or two, my heart rate calmed down. The rate was regular, but fast...about 160. I did have atrial fibrillation 14 years ago...so anything with my heart freaks me out. after my heart calmed down, I started to shake. I was not cold at all....I was having involuntary muscle spasms, especially in my legs. They lasted for about 5 minutes. I was thinking of going to the hospital, and they subsided.
> after this, I read that too much levothyroxine can cause these symptoms.
> ...


Why can't they do RAI (radioactive iodine) to kill off the remaining thyroid and cancer cells. Thyroid cancer metathesizes to other organs including the breasts in women.

I only know that I personally would not be comfortable w/cancer cells in the remaining thyroid tissue.

How do you feel about this? Do your research and by all means get a second opinion; even a third if necessary.

LHM!!


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