# I started Levoxyl and my anxiety and panic attacks are awful



## Sazco (Jan 7, 2013)

Hi everyone. I have been feeling really awful for years and got so bad I could barely function. I was just so exhausted and felt half awake, painful hands and feet, migraines, horrible periods, bad water retention, weight gain, puffy hand and face, and the list goes on. They finally figured out that it was my thyroid and I started on 25 mcg of Levoxyl about 2 weeks ago. I really do feel less brain fog and I have more mental energy. The pain in my hands and feet did go away for about a week but now it is back, and worse! Now I find myself getting these awful panic attacks. I have never had such awful panic attacks and I feel like such a mess. Is this normal? I seem to not be able to sleep at night and later in the day is usually when the anxiety bothers me the most. I was so hopeful when I started to feel better so soon but it is going down hill fast

My labs were:
TSH-6.540 range 0.270 - 4.200
T4 Free-.8 range 0.90 - 1.70
Thyroid Peroxidase Ab-752.2 range <9.0

The other labs that she ordered were: Insulin like growth factor,testosterone, DHEA-Sulfate, Luteinizing Hormone, Follicle Hormone, Prolactin, and Estradiol and they were all normal.

I have been dealing with this for years and I just want to be able to take my kids to the grocery store without being so tired that I feel like I am going to pass out OR having such a bad panic attack that I have to run out of the store  I do not like this person that I have become and I just want to be happy and carefree again.


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## joplin1975 (Jul 21, 2011)

I'm sorry. That sounds like my experience when I started Synthroid before surgery.

Have you had TSI tested? Have you had an utlrasound of the thyroid?

My money says you have TSI in your blood, which makes synthroid (at least in my experience) rather hard to tolerate.


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## Sazco (Jan 7, 2013)

Hello. Thanks for the response. The only labs that I have had done are the labs posted above. I will do some research on TSI. Thanks for the info.


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## joplin1975 (Jul 21, 2011)

And absolutely get an ultrasound. Especially with TPO that high. Cancer needs to be ruled out.


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## Sazco (Jan 7, 2013)

joplin1975 said:


> And absolutely get an ultrasound. Especially with TPO that high. Cancer needs to be ruled out.


Ok thanks. She said that she did not feel anything when she did the physical exam of my neck area. But you can never be too safe, right? Should I call her now or wait until my follow up appointment in a few weeks? Thanks


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## Gwen1 (Sep 3, 2011)

You have been started on a very low dose. You probably need a higher dose, but with thyroid hormone, you need to be titrated up by 12 mcg. increments. Testing every 6-8 weeks. Once your labs look reasonable, you'll stay on whatever dose for longer. It takes time to get to the dose that your body needs. You don't want to overshoot the dose and become overmedicated. That is not fun.


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## joplin1975 (Jul 21, 2011)

Sazco said:


> Ok thanks. She said that she did not feel anything when she did the physical exam of my neck area. But you can never be too safe, right? Should I call her now or wait until my follow up appointment in a few weeks? Thanks


Well, you need it done, but its not an emergency. I would, however, be calling her about your reaction to the meds and get her suggestion. So, you might as well wrap all those questions into one call.


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## Sazco (Jan 7, 2013)

Thank you everyone! I will send her an email and mention everything. That way I will not forget anything in the phone call and I will feel like less of a pest. Lol I think I have been treated like I am just "crazy" from all other Drs for so long that I get nervous calling the Dr. LoL


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## Andros (Aug 26, 2009)

Sazco said:


> Ok thanks. She said that she did not feel anything when she did the physical exam of my neck area. But you can never be too safe, right? Should I call her now or wait until my follow up appointment in a few weeks? Thanks


You cannot always "feel" things. Follow through on this.


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## Sazco (Jan 7, 2013)

Will do! I sent her an email


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## I DClaire (Jul 31, 2011)

My anxiety nightmares began last summer. I was even hospitalized - everyone thought I was having a heart attack the first time, the second trip to the ER ended-up with two months of doctors' appointments, tests, etc., devoted to my abdominal area. In retrospect, I think I was producing mixed signals at an astonishing rate! One week ago tomorrow, Thursday, I switched from Armour to Synthroid and I haven't had so much as a hint of anxiety ever since!

I felt like I was literally losing my mind!

I know I'm under-medicated right now and not due for new labs for two months but I can endure anything compared to fullblown anxiety attacks. I have reason to believe I was under-medicated with the Armour but probably not a whole lot and it really never particularly struck me that my anxiety was stemming from Armour. The first day I took Synthroid it was like taking a wonderful tranquilizer without any side effects.

It may be a long time yet before I get all this sorted out but I'm enjoying feeling more like myself now. What works for one certainly doesn't work for all and dosages further individualize what it takes to make each of us function normally. I tell myself I'm cautiously optimistic.


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## Sazco (Jan 7, 2013)

I DClaire said:


> My anxiety nightmares began last summer. I was even hospitalized - everyone thought I was having a heart attack the first time, the second trip to the ER ended-up with two months of doctors' appointments, tests, etc., devoted to my abdominal area. In retrospect, I think I was producing mixed signals at an astonishing rate! One week ago tomorrow, Thursday, I switched from Armour to Synthroid and I haven't had so much as a hint of anxiety ever since!
> 
> I felt like I was literally losing my mind!
> 
> ...


I am so sorry that you had to go through that! I am glad that switching medications helped you. I hope this is just my body adjusting and that I get better soon too. Thanks!


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## Sazco (Jan 7, 2013)

Hi everyone. I have another appointment on April 9th to discuss all of this. But I am going downhill fast. I am so exhausted my legs feel like bricks. My feet are in so much pain and my hands keep cramping up to where I cannot open them. I have at least 1 or 2 horrible what I think are anxiety attacks per day. I am to the point now where I cannot evenb leave the house. Anytime I go into a store, I am not sure if it is the lighting or what but I get very dizzy like I am walking sideways and feel like I am going to faint. I feel crazy and tired and crazy(did I mention that?). I can barely take care of my 2 sons because I am so physically and mentally exhausted. I felt better my first week on medicine but ever since then it has gone downhill and fast


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## joplin1975 (Jul 21, 2011)

Sazco, are you still taking the Levo? Please consult with your doctor, but it might be best to stop taking it until things can be sorted out. The anxiety attacks are why I had to stop taking my Synthroid.


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## Sazco (Jan 7, 2013)

joplin1975 said:


> Sazco, are you still taking the Levo? Please consult with your doctor, but it might be best to stop taking it until things can be sorted out. The anxiety attacks are why I had to stop taking my Synthroid.


Yes I am still taking them. I just left a message with the Dr's office about how I am feeling. I hope she calls me back soon with some instructions. This is awful. Thanks for the response. This is scary


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## Andros (Aug 26, 2009)

Sazco said:


> Hi everyone. I have another appointment on April 9th to discuss all of this. But I am going downhill fast. I am so exhausted my legs feel like bricks. My feet are in so much pain and my hands keep cramping up to where I cannot open them. I have at least 1 or 2 horrible what I think are anxiety attacks per day. I am to the point now where I cannot evenb leave the house. Anytime I go into a store, I am not sure if it is the lighting or what but I get very dizzy like I am walking sideways and feel like I am going to faint. I feel crazy and tired and crazy(did I mention that?). I can barely take care of my 2 sons because I am so physically and mentally exhausted. I felt better my first week on medicine but ever since then it has gone downhill and fast


Maybe you should not be on thyroxine replacement until you make sure you are not hyperthyroid. You sound hyper to me.

The TSI and Trab are blocking and stimulating antibodies to the receptor site which may be skewing your TSH and other lab results.

With hyper you are exhausted to the max because even when you "think" you are resting, your body is going in high gear.

Please insist on these tests and either ultrasound and/RAIU (radioactive uptake.) RAIU would be better.

TSI
Normally, there is no TSI in the blood. If TSI is found in the blood, this indicates that the thyroid stimulating immunoglobulin is the cause of the of a person's hyperthyroidism.

Negative test results means that the autoantibodies are not present in the blood at the time of testing and may indicate that symptoms are due to a cause other than autoimmune. However, a certain percentage of people who have autoimmune thyroid disease do not have autoantibodies. If it is suspected that the autoantibodies may develop over time, as may happen with some autoimmune disorders, then repeat testing may be done at a later date.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583


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## Sazco (Jan 7, 2013)

Andros said:


> Maybe you should not be on thyroxine replacement until you make sure you are not hyperthyroid. You sound hyper to me.
> 
> The TSI and Trab are blocking and stimulating antibodies to the receptor site which may be skewing your TSH and other lab results.
> 
> ...


Thanks for the info. I do know that my heart rate is low as well. It has been like mid/upper 50s to low 60s. Do you think that would be higher if I were Hyper? I have jotted down your info and will definitely bring it up when they call me back. Thanks!


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## Andros (Aug 26, 2009)

Sazco said:


> Thanks for the info. I do know that my heart rate is low as well. It has been like mid/upper 50s to low 60s. Do you think that would be higher if I were Hyper? I have jotted down your info and will definitely bring it up when they call me back. Thanks!


I don't know about the HR as everybody responds so differently to the same thing.

All I do know is that hyper should be ruled out before the patient is placed on thyroxine and also if a patient has thyroid cancer there is a propensity for not being able to tolerate thyroxine replacement (faux hyper symptoms if you will.)

Not a doctor but I have been around a long long time and have observed much.


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## Sazco (Jan 7, 2013)

Andros said:


> I don't know about the HR as everybody responds so differently to the same thing.
> 
> All I do know is that hyper should be ruled out before the patient is placed on thyroxine and also if a patient has thyroid cancer there is a propensity for not being able to tolerate thyroxine replacement (faux hyper symptoms if you will.)
> 
> Not a doctor but I have been around a long long time and have observed much.


Thank you for the fast response. I definitely appreciate your input and will bring it to my Dr. Something is definitely not right since I started these meds and maybe you are on to something. I will keep you posted via this thread. Thanks!


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## Gwen1 (Sep 3, 2011)

Let us know how it goes, Sazco. With a tsh above 6 and ft4 below range, it looks like you needed a higher starting dose. That's why you felt good and saw improvements the first week or so on the 25. Shows you needed it.


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## Sazco (Jan 7, 2013)

Gwen1 said:


> Let us know how it goes, Sazco. With a tsh above 6 and ft4 below range, it looks like you needed a higher starting dose. That's why you felt good and saw improvements the first week or so on the 25. Shows you needed it.


Thanks. I will keep everyone posted. Yes in my first 2 weeks I had warm feet for the first time in 3 years! I also had no "brain fog" but I was still tired and achy. But it was nice to see an improvement. Now today I have my house at 80 degrees and I am freezing and my brain is full of fog. It is upsetting. I appreciate everyone's advice and support. At this point I would just be happy to feel at least halfway closer to my "old" self. I feel like I have no quality of life.


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## Gwen1 (Sep 3, 2011)

I have Hashi's. And it looks like you have high antibodies which could indicate Hashimoto's Thyroiditis. The antibodies could have been gradually destroying your thyroid over the years so that now you have very little function left. That's my guess.

Editing this to say, from reading your other threads, I see that you have been diagnosed with Hashi's.


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## jenny v (May 6, 2012)

> Yes in my first 2 weeks I had warm feet for the first time in 3 years! I also had no "brain fog" but I was still tired and achy. But it was nice to see an improvement. Now today I have my house at 80 degrees and I am freezing and my brain is full of fog. It is upsetting. I appreciate everyone's advice and support. At this point I would just be happy to feel at least halfway closer to my "old" self. I feel like I have no quality of life.


 Unfortunately, this is usually the way it goes. Getting your thyroid replacement dialed in correctly takes a long time and a lot of dosage changes, usually. It will take a while but you will get to feeling like your old self again; you just have to give it time and patience.


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## Sazco (Jan 7, 2013)

Just writing an update. I have been feeling my heart pound and race and I almost fainted and ended up in the ER. My blood pressure was 209/110 and I was having heart palpitations. It went down to about 130/80 after 6 hours in the ER. The next morning I called my Dr. She told me to stay off of my meds for 2 days and buy a blood pressure monitor to use at home. I have not taken my pill in 2 days and I no longer feel my heart pounding. My blood pressure is around 100/60 up to 120/90 depending on the readings. My pulse has been between 48-80 in the readings as well. When she reordered my labs my TSH was down to 2.5 but my free T-4 was still at .8 
So the meds worked to bring down my TSH but my T-4 has not really changed. So now I am off of my meds until Monday and she will re test me and go from there.  This is all so scary and frustrating. Has anyone else reacted to their meds like this? She still has said nothing about the other antibodies test or thyroid scan. Should I be a bit more pushy or do you think it is simply a reaction to the meds. Thanks in advance (again!)


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## Gwen1 (Sep 3, 2011)

I'm kind of stumped. Because like Andros said, some of those symptoms sound like hyper, but my first inclination is that you need a higher dose because 25 mcg. is like taking nothing.
Yet..... I've gone low on my dose this past year and had the heart pounding too.
Please keep us posted and hopefully someone else will have some more insight.


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## joplin1975 (Jul 21, 2011)

Definitely get those antibody tests. As I said, I didn't end up in the ER, but I was a disaster. Sweating profusely, unable to sleep, palpitations, etc.


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## Sazco (Jan 7, 2013)

Thanks for the response. This is my 4th morning not taking my pill. I feel much better. Of course my joint pain and bloating is back in full force but it is better than how I felt before. So it must have been the meds. I definitely am going to push for those tests before I get on any other medication. This was very scary! Thanks again


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## JessicaG (Mar 12, 2013)

For the past few weeks I've been having the what seems to be going hyper and hypo. I had high tpo and plan on getting the tsi checked at my appt tomorrow. I didn't start the synthroid as she prescribed and glad I didn't. Do you feel like there's a lump in your throat before these highs happen?


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## Sazco (Jan 7, 2013)

JessicaG said:


> For the past few weeks I've been having the what seems to be going hyper and hypo. I had high tpo and plan on getting the tsi checked at my appt tomorrow. I didn't start the synthroid as she prescribed and glad I didn't. Do you feel like there's a lump in your throat before these highs happen?


Hello. I am sorry that you are going this too. I do feel like my throat is a bit fuller and maybe like food is getting stuck there when I swallow. Please post and let me know what your doctor says! Mine wants to switch me to Tirosint 13mcg. My appointment is April 9th and then she will test me for TSI as I requested. The ER doctor suggested that she check my Cortisol as well when I go in.


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## Girlygirl90 (Jan 9, 2013)

I have always had PVC's (benign palpitations) and was told by my doctor that I need to start a low dose of Synthroid because a higher dose WILL make them worse! When I first started taking it 2 months ago, there were two nights in a row when I had a palpitation almost every 10 seconds. Scared me to death- I almost went to the ER, but then I had just had an echo/ekg a few days before (I do this yearly to check my Mitral Valve Prolapse) and he said everything was fine.

Then, they just disappeared, or "back to normal" I should say which is just a few a day that can be ignored. I did notice this twice when I started the synthroid...about a week after then about 6 weeks after. Even at a low dose. Luckily, the 25MCG has my TSH back to normal. I may need to go a little higher to get under the 3.0 though. I'm at 3.14 but I read endo's recommend under 3. My PCP says I'm on the fence I could stay where I am or if I feel more symptoms, then she could increase synthroid slightly.

The palps also coincided with my period or at least before it began. Then a day after my period began, they stopped. I think it has to do with the synthroid and hormone levels? It must...

When I was 5 months pregnant, I had the exact same thing- palps every 10 beats. The Echo was normal (besides my MVP). I was told it was hormonal.

An Echo/EKG can ease your mind if your doctor recommends it. I don't like to mess around with my heart! But, the cardiologist told me these kind of palps that I'm having are common in: Anxiety & women in general. I read somewhere that 70% of us have them but most don't notice. It's important to get them checked though.

Good luck!


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## Sazco (Jan 7, 2013)

jsimms said:


> I have always had PVC's (benign palpitations) and was told by my doctor that I need to start a low dose of Synthroid because a higher dose WILL make them worse! When I first started taking it 2 months ago, there were two nights in a row when I had a palpitation almost every 10 seconds. Scared me to death- I almost went to the ER, but then I had just had an echo/ekg a few days before (I do this yearly to check my Mitral Valve Prolapse) and he said everything was fine.
> 
> Then, they just disappeared, or "back to normal" I should say which is just a few a day that can be ignored. I did notice this twice when I started the synthroid...about a week after then about 6 weeks after. Even at a low dose. Luckily, the 25MCG has my TSH back to normal. I may need to go a little higher to get under the 3.0 though. I'm at 3.14 but I read endo's recommend under 3. My PCP says I'm on the fence I could stay where I am or if I feel more symptoms, then she could increase synthroid slightly.
> 
> ...


Thank you so much for the response! Now that you mention it, my period is due at anytime now. I did have an EKG when I went into the ER. They went ahead and referred me to a cardiologist just in case so I get get a monitor to wear for a week and do stress tests etc. I have not had any of the palps in 2 days and I have been off of my meds for 7 days now. My Dr switched my prescription from Levoxyl to Tirosint. It is a small 13.5 mcg dose and she said she might have to take me up in baby steps. I am honestly horrified to start taking the pills again! It took 5 days of stopping the pill to feel "normal" again and I fear that it is going to happen again. The pills made me feel crazy and I had (TMI sorry) very many bowel movements and a lot of anxiety. Hopefully it was just my hormones with my time of month arriving. That makes sense! Thanks again!


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## Sazco (Jan 7, 2013)

Hi everyone. I recently moved and got a new Endo. It does appear that I do have elevated TSI as you suggested. I have been off of meds for 8 weeks now after trying Levoxyl and Tirosint and getting horrible anxiety, diarreah, heart issues after the smallest dose. I am very scared and curious to see my Doctors plan on how I go about treating this. I will see him next Monday. Any advice appreciated. This sure explains how I literally feel crazy!


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## joplin1975 (Jul 21, 2011)

Yup, that was me too. My husband told me it was like living with a meth addict.

You can investigate block and replace. I don't know much about it, but I understand it takes a lot to manage.

Frankly, if I were in your shoes, I'd have that sucker removed ASAP.


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