# New guy here! With questions and my story!!



## MisterGrubbs (May 19, 2013)

I skipped over the introduction portion of this forum because...well...I figured this would suffice! I am 26 years old and I live in Georgia. I am a male.

At the age of 14 I was diagnosed with Hashimoto's disease. At the age of 15 I quit taking the medication...it did nothing for me(or at least it didn't seem that way!)

Now, 10 years later, it was re-introduced to my life and that's what brings me here!

October/November 2011 - I journeyed over to my PCP for a checkup due to an ear infection. After a few minutes of talking, she asks about my thyroid and if I had been diagnosed with thyroid issues. Why yes, I have, I told her. She asks for lab work and it comes back - my TSH is around 7.00. She proceeds to tell me how important it is that I correct this now...and puts me on 88mg of Levothyroxine/Synthroid.

December 2011 - Don't feel any different! She sends off for labs ... my TSH is now 10.00 +. Really? What the hell? Yup...so she increases my doseage to 112mg.

January/February 2012 (and where the fun starts!!) - I go in for a checkup(routine) and mention to her I don't feel any different - - - should I?? At this point I have already had three panic attacks(One I could identify as a panic attack, the other two I thought to be allergic reactions...at the time). I negated to mention this because I didn't think it was related whatsoever. Without sending off for labs, she increases my doseage to *175mg*.

March 2012 - I have the biggest panic attack to date. I was driving to work and my entire body went numb and it seemed hard to do anything. I felt compression on my chest and I was sure that I was having a heart attack. I continued to work where the symptoms reoccurred shortly thereafter, prompting me to leave work. I had reassurance from a nurse(friend) that it was merely a panic attack that I needed to go breathe.

Two days later (after being bedridden in fear) I finally go to my PCP. Chest xrays, ekg, and a few other small tests reveal anxiety issues. "It will work itself out," she told me, "take a Xanax if it gets too bad" - and then proceeds to prescribe me Xanax.

Three days later I have another horrible attack and end up in the ER, sure of a heart attack, but everything was fine.

I will condense this book a little bit from here, otherwise this would be a 15 page writeup that no one could get through (ha).

I put myself back on 88mg of Synthroid(I have noticed at this point that the three panic attacks came after the initial increase to 112mg) and go see an Endo. She has been increasing my doseage for the last year while I suffered. There is "no way" Synthroid is the villain here, according to her.

Funny fact : EVERY TIME I have an increase in doseage, my symptoms increase. I am back up to 150mg now and my symptoms are getting worse. Severe chest pain, Chronic pain, severe Anxiety. After 3-4 weeks of being on a doseage the symptoms get better...as soon as the doseage is increased, the severity and frequency of my symptoms also increases dramatically until my body has gotten use to the drug. With that said, I have been on 150mg for three months almost now and I still have chest pains and severe anxiety...every day. My endo will not take me off the drug and says there are no other viable options at this time.

I have been on anti-depressants/anxiety medication...it helped for a while but as soon as my thyroid medication was increased, the symptoms were worse! I have had every test known to man run - from my heart to my brain to my adrenal glands to my personal area. Nothing.

I am going for a consultation with a good Endo in Atlanta on the 28th of this month...really hoping to find out that my Endo locally has been poisoning me and hoping to have my life back.

Sorry to be long winded and hopefully someone feels like reading this book! Hopefully I have not missed anything...if I did I will try to edit that or answer them with your questions.

The question is - has anyone else here ever had similar issues? I have begged my Endocrinologist and she swears it is all in my head. Repeated patterns prove facts, to me, and I think she is a bad doctor - so I'm going to a proven(good) doctor to find out!

Nice forum, glad to be here!

Ryan


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## hashimotocoaster (Mar 22, 2013)

I had chest pain/anxiety/tremors/all that good stuff when I was on a higher dose of Synthroid. Once it was lowered the symptoms mostly went away. The problem now is that I'm having hypo symptoms again! The thing with Hashimoto's is this--if your thyroid is unstable, there's no magic correct dose for you. It'll change. It does sound to me like you're on too much replacement, based on your symptoms. I hope your new doctor listens to you!


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## Shannonbell (May 18, 2013)

I am new here too. Just posted my story this morning. My story sounds a lot like yours. When my dosage is increased i have worsening of symptoms for awhile. I have been just trying to wait them out and stay on the meds.


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## MisterGrubbs (May 19, 2013)

Glad I'm not alone!! Its been a very horrid year of my life...


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## MisterGrubbs (May 19, 2013)

Would also like to add I have had horrible heartburn, acid reflux, indigestion, and gas.


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## bigfoot (May 13, 2011)

MisterGrubbs said:


> Without sending off for labs, she increases my doseage to *175mg*.


First off, good to have you here! Welcome! :anim_32:

Secondly, that is a HUGE increase, from 112 mcg to 175 mcg of T4, all at once. I think your doc has the right intentions, but doesn't exactly know how to get there or what they are doing. That can be dangerous itself. You want to go "low 'n' slow" with the hormone changes, no more than 12.5 mcg - 25 mcg increase at a time. I think you are totally right-on to find a new doc to evaluate this stuff, ASAP.

The fact that this happens every time you make an increase to your medication, and subsides when you throttle back, shows it's clearly *not* all in your head. There is a pattern here, and it's connected to hormones. The definition of insanity is doing the same thing over and over, and expecting a different result. Sounds like your doc falls into _this_ camp.

I, too, have struggled with anxiety and lots of other symptoms over the last few years. Not all my issues are thyroid-related, and I want to ask if you've ever had other hormones checked? I'm copying something else I posted a few days ago for another member here, who is possibly dealing with testosterone and/or thyroid issues. Believe it or not, low testosterone can cause a great deal of anxiety, too. I've seen this firsthand with my own experiences. Heck, even having a bad gluten intolerance can contribute to anxiety or heart palps, amongst other things. Also, have you ever had a thyroid ultrasound? That would be good to get a baseline.

--- Begin Gratuitous Cut-and-Paste---

"You are absolutely correct in your research, and it's probably high time to find a doc who understands this hormone and endocrine stuff in more detail. A Total Testosterone level of 299 is *NOT* in all likelihood, "fine," as your doctor said. There are some folks walking around with a level of 299 who might be okay, but you presented yourself to your doc, obviously have complaints, and these labs (thyroid and testosterone) are off.

Do not pass go, do not collect $200. You need to ideally find out why your testosterone is low in the first place, before starting any sort of treatment. And you also want to get your thyroid squared away first before starting testosterone treatment. The two play off each other and one being out of whack can mess up the other. Symptoms from testosterone and thyroid issues can sometimes appear the same. Fatigue, low libido, low energy, brain fog, anxiety, depression, weight gain, etc. and the list goes on. Look into reading "The Testosterone Syndrome" by Dr. Shippen (a little dated, but still good), and "Stop the Thyroid Madness" (STTM), which overly simplifies things and pushes Armour, but is also still good.

Get more comprehensive hormone labs drawn ASAP. You need all of these:
- Total Testosterone
- Free Testosterone
- SHBG
- Estradiol
- TSH
- Free T4
- Free T3
- TPO Ab
- Thyroglobulin Ab
- 24-Hour Cortisol (Urine or Saliva)

And look into getting these done, too:
- Liver panel
- Iron
- CMP & CBC
- Vitamin D-25
- Vitamin B-12
- Celiac disease
- Gluten Sensitivity (typically saliva, not the same as full-blown Celiac)
- Prolactin

I have been going through all of this stuff for the last five years, and while it's not easy, there is definitely a right way and a wrong way to go about it. The labs above will give you a baseline of where to start and save you a lot of frustrations and headaches down the road. Same goes for investigating the "why" before initiating any sort of treatment. My humble opinion? You might need thyroid meds and testosterone replacement. But until you have the test results, and a good doc to interpret them, it's really impossible to know exactly where to start. There could be something else in the background influencing all of this.

Testosterone hormone-replacement will involve a handful of common choices. Which treatment you choose and works for you will vary. If/when you do start hormone replacement, docs typically begin at around 5-7.5mg a day, which is what your body makes naturally. Treatment will shrink the testes and your body will slow/stop production with this external T applied. That's why it's important to get a full replacement dose for your body, then re-test the levels along the way, adjusting up or down if necessary.

- Topical Gels (Androgel, Testim)
- Patches (Androderm, etc.)
- Injections (Testosterone Cypionate)

Each T. treatment choice has its pro's/con's. The Gels are easy to apply, but can transfer to spouse & kids if not careful, and are messy. Patches are a little simpler, and give a nice 24-hour output, but adhesives can irritate the skin. Injections are usually described as every two-weeks or once-monthly, done in the doc's office, but *really* you'd want to do it at home weekly to avoid big time hormone crashes towards the end of the cycles. The injections are the gold-standard, but you really need someone well-versed in hormones to guide you.

On to the thyroid... again, gonna need those more detailed labs. Total T4 and Total T3 are pretty much worthless. The TSH gives a rough idea of things, but the Free T3 and Free T4 are what to dose potential treatment on. The antibody tests (TPO and Thyroglobulin) will give an idea of whether you are dealing with Hashimoto's, or just straight hypothyroidism. Despite what the docs say, they are *not* one in the same. Hashimoto's is an autoimmune attack that eventually leads to hypothyroidism (after years and years), while hypothyroidism is just your body not producing enough thyroid hormone.

Thyroid medications are going to be either synthetic or natural, in either T4-only, T3-only, or combo T4+T3. Always go for brand-name if you can, with no substitutions by the pharmacy. Generics are okay, but can vary in potency, and which manufacturer supplies the pharmacy each month. Synthroid, Levoxyl (currently recalled), etc. are brand-name T4-only meds.

If you are a poor converter of T4->T3, then you might want to look into Armour or Nature-throid down the road, which is natural and porcine-based, and has a fixed ratio of T4/T3 in it. Or you can combine synthetic levothyroxine (T4) with something like a small amount of Cytomel (T3). Finding a doc who will RX Armour-type products or Cytomel is going to take a little research, same goes for one who doesn't dose solely by TSH level.

Most docs, urologists, and endocrinologists will go by lab numbers only for thyroid and testosterone, and will throw T4-only (levothyroxine) and a testosterone gel at you, and send you on your way out the door. Bad idea. You need to find a skilled D.O., an out-of-the-box MD, naturopath, or anti-aging doc. Or you might get lucky and find an astute endo or urologist in your area.

Hope I didn't throw too much out there, apologies for some of the rambling, but if you have any questions please ask. I know there are a few of us floating around on the boards here who are dealing with thyroid AND testosterone issues."


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## Andros (Aug 26, 2009)

MisterGrubbs said:


> I skipped over the introduction portion of this forum because...well...I figured this would suffice! I am 26 years old and I live in Georgia. I am a male.
> 
> At the age of 14 I was diagnosed with Hashimoto's disease. At the age of 15 I quit taking the medication...it did nothing for me(or at least it didn't seem that way!)
> 
> ...


Hi there Ryan and..........................









Sadly, there is much more to this than just TSH and Synthroid.

Here is a list of tests and I cannot urge you strongly enough to insist on an ulta-sound. Men are at a high risk for thyroid cancer. Actually, not being able to tolerate increases in thyroxine is sometimes an indicator. I have seen it a jillion times.

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.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

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

TPO (antimicrosomal antibodies) TBII (thyrotropin-binding inhibitory immunoglobulin), Thyroglobulin and 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/


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## MisterGrubbs (May 19, 2013)

Holy responses Batman thanks! The new endocrinologist is part of a crew of 5 in Atlanta...so we will see!

I have had a thyroid MRI or xray or whatever it is deemed as. 1cm nodule. Haven't had it tested yet(scared to death). I don't like things in or around my throat.

I don't think my testosterone has been tested. I know she checked some urine analysis for growths on the adrenal glands which came back normal.


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## MisterGrubbs (May 19, 2013)

I have also stopped taking my thyroid medication. I am taking one 150mg pill every three days now and (in general) feel better. I don't know how smart of a move it is...but its helping.


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## bigfoot (May 13, 2011)

I would be careful stopping outright for any big length of time. At this point, your thyroid has probably seen all the external hormone you were giving your body (all 175 mcg of it), and decided to take an extended vacation. I honestly don't know how quickly whatever remaining thyroid function you may have would take to restart. And all of this is predicated on the fact of you being truly hypothyroid, which may not be the issue.

That said, the half-life of T4 medication (levothyroxine, Synthroid, Levoxyl, et al) is about a week, plus or minus based on each individual. So if you were to stop taking 150 mcg cold-turkey today (and not take it again), in a week it would have broken down to 75 mcg; then, in another week 37.5 mcg; then, in another week, 18.75 mcg; and so forth.

So you just have to balance the math with your labs, and also how you feel. And hopefully you can get more pieces of the puzzle figured out, too.


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## MisterGrubbs (May 19, 2013)

Can a trying truly negative come from skipping dose ages of thyroid? I am currently on 150mg and have been taking one every three days for two weeks now. My energy is a little better but I am still very tired and my overall anxiety seems to have decreased some.


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## CA-Lynn (Apr 29, 2010)

Let me just correct MisterGrubbs on his unit of measure.....you mean micrograms [mcg], NOT milligrams [mg]. Huge difference.

I think taking one pill every three days is not in your best interests. The whole idea is to keep a consistent level of the drug in your body. The way you're doing it, you're creating a yo-yo effect. Harder for the body to deal with. Better to split the pill [into thirds or whatever] and take daily.


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## MisterGrubbs (May 19, 2013)

CA-Lynn said:


> Let me just correct MisterGrubbs on his unit of measure.....you mean micrograms [mcg], NOT milligrams [mg]. Huge difference.
> 
> I think taking one pill every three days is not in your best interests. The whole idea is to keep a consistent level of the drug in your body. The way you're doing it, you're creating a yo-yo effect. Harder for the body to deal with. Better to split the pill [into thirds or whatever] and take daily.


After the insane panic attack I had today I might have to agree.


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## mariska (May 22, 2013)

I am new here. had to struggle to get on, thanx to the Admin, I am finally in. Thank you K 

Here is my 1st and 2nd test results taken a month apart.

TSH 1ST 3.69 2ND 2.47 (0.35 - 4.94 mIU/L)
FT4 1ST 8.57 2ND 12.1 (9.0 - 22.2 pmol/L)
FT3 4.5 (2.6 - 5.7pmol/L)
anti TG Antibody 15.24 IU/mL H <4.11
anti - TPO Antibody 8.03 H<5.61

Clinical Category
Anti TG Antibody Hashimoto's 75% Graves 75%
Anti TPO Antibody Hashimotos 64% Graves 92%

Just to keep you up to date with previous email

I had a full blood count to, only 2 things that were flaged is WBC 12.3 PH (4 - 12 10%5E9/L) and Neutrophil 8.60 PH (2 - 7.5 10^9/L Blood pressure 120/80
blood sugar 3.9
I am 28 years old I was given euthyrox 100mg - I only take 1/2 as from today 18.04.2013 - this has been increased to 75mg as of 20.05.2013
leucocytosis with mild increase in neutrophilis
Symptoms: Bad Hair loss, 39.1 kgs picked up in 4 years after my son's birth in 2008 (1KG A WEEK)
Severe dizziness, off balance, ringing ears, headaches, moody, pressure in my head, it feels like my eyes want to pop out some days, Muscle cramps, pain in my arms, legs, back, feet even when I wake up in the morning it feels like I have been on my feet the whole night. water retention, and sometimes when I swallow its harder, it feels like there is something that makes me have to swallow more to get the food past "it", nausea, acid reflex, and a miscarriage in May 2012

seeing that I am super new to all of this, any replies will be welcomed..

Mariska


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## BlindMag (May 17, 2013)

MisterGrubbs said:


> After the insane panic attack I had today I might have to agree.


I empathize - panic attacks SUCK. One thing that could help - are you on Synthroid? It's weird, but the different brands can affect people differently. In my case, Levothyroxine made me crazy - I had daily panic attacks and got angry at the entire world for everything. It only happened to me on that specific pill - Armour and Erfa (Canadian version of Armour) never did that to me. Is there any chance you could call your doc and ask for a switch in brands to see if it'd help?  (You could also ask them to prescribe it as smaller pills so that you can split it up, in case that helps?)

Maggie


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## Andros (Aug 26, 2009)

MisterGrubbs said:


> Holy responses Batman thanks! The new endocrinologist is part of a crew of 5 in Atlanta...so we will see!
> 
> I have had a thyroid MRI or xray or whatever it is deemed as. 1cm nodule. Haven't had it tested yet(scared to death). I don't like things in or around my throat.
> 
> I don't think my testosterone has been tested. I know she checked some urine analysis for growths on the adrenal glands which came back normal.


Did the doctor recommend FNA (fine needle aspiration) of that nodule? I would be more scared of not doing it than doing it.


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## Airmid (Apr 24, 2013)

MisterGrubbs said:


> Holy responses Batman thanks! The new endocrinologist is part of a crew of 5 in Atlanta...so we will see!
> 
> I have had a thyroid MRI or xray or whatever it is deemed as. 1cm nodule. Haven't had it tested yet(scared to death). I don't like things in or around my throat.
> 
> I don't think my testosterone has been tested. I know she checked some urine analysis for growths on the adrenal glands which came back normal.


Biopsies are a bit hard with thyroids. With a good Endo though they don't have to be terrible.

When I first met my new Endo he seemed unapproachable and I was scared to death of having biopsies. He turned out to be a really kind person and we joked around between needles with the ultrasound tech which really helped. He was very gentle though I still did end up with bruises due to the depth of one of the nodules but it wasn't the end of the world. I just told people my fiancee gave me a massive hickey much to his chagrin :tongue0015:

Don't wait on having that nodule checked out. You'll only worry yourself to death.

As to the issues with the thyroid medicine - I have Hashimoto's also and in the past year I went from 50 mcg's to 200 mcg's to try to control my thyroid. Hasn't worked out well. Some days I end up feeling really anxious and I do cut back some on my thyroid medicine which seems to help alot. Then I'll go back up to my 200 to help with the hypo symptoms. Even with that huge jump in thyroid medication they still tried to do it slowly. I've actually hit the point where both me and my Endo are uncomfortable going any higher.

Though I do usually stay at my 200 mcg per day. I've also noticed that taking half the dose twice a day helps with anxiety and hyper symptoms. I'm a cornucopia of thyroid medication doses so it's easy for me to do this. It might be wise to ask your doctor if this is right for you.

As pointed out, thyroid issues can cause hormone issues as well. I am a woman so I don't know it from a man's perspective, but I can tell you that the worse my thyroid gets the worse my periods and feminine issues get. The closer it comes to normal at times the better things are in that regards.

It seems Hashimoto's patients can be really hard to control in regards to thyroid issues. I would definitely seek out a doctor who is knowledgeable in this area to help address both the thyroid and other issues you are having.


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## MisterGrubbs (May 19, 2013)

Airmid said:


> Biopsies are a bit hard with thyroids. With a good Endo though they don't have to be terrible.
> 
> When I first met my new Endo he seemed unapproachable and I was scared to death of having biopsies. He turned out to be a really kind person and we joked around between needles with the ultrasound tech which really helped. He was very gentle though I still did end up with bruises due to the depth of one of the nodules but it wasn't the end of the world. I just told people my fiancee gave me a massive hickey much to his chagrin :tongue0015:
> 
> ...


We will see come the 28th! I know all of the women(personally) that work st my local office...great people. My endo I wouldn't trust to wipe my ass after what I have been through...thus the reason I haven't had the biopsy done. Truthfully I don't think about it much and it doesn't scare me...my concern is my chest pains.

If my new doctor is as decent as I am praying for he will do the biopsy for me. My nodule is dead center behind my Adam's apple and scares the tee total crap out of me(the location...having a needle shoved in!)

I am on synthroid. Levothyroxine affected me the same way.


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## bigfoot (May 13, 2011)

Airmid said:


> As to the issues with the thyroid medicine - I have Hashimoto's also and in the past year I went from 50 mcg's to 200 mcg's to try to control my thyroid. Hasn't worked out well. Some days I end up feeling really anxious and I do cut back some on my thyroid medicine which seems to help alot. Then I'll go back up to my 200 to help with the hypo symptoms. Even with that huge jump in thyroid medication they still tried to do it slowly. I've actually hit the point where both me and my Endo are uncomfortable going any higher.
> 
> Though I do usually stay at my 200 mcg per day. I've also noticed that taking half the dose twice a day helps with anxiety and hyper symptoms. I'm a cornucopia of thyroid medication doses so it's easy for me to do this. It might be wise to ask your doctor if this is right for you.


A little OT, but has your doc ever suggested a combination of T4 + T3 meds? Just thinking out loud, but since T3 is much shorter (and quicker) acting, perhaps it would give better finite control over the daily ups/downs? You could have a steady middle-of-the-road dose of T4, then adjust T3 from there.


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## MisterGrubbs (May 19, 2013)

bigfoot said:


> A little OT, but has your doc ever suggested a combination of T4 + T3 meds? Just thinking out loud, but since T3 is much shorter (and quicker) acting, perhaps it would give better finite control over the daily ups/downs? You could have a steady middle-of-the-road dose of T4, then adjust T3 from there.


My current endo and I haven't seen eye to eye. Told her it was causing me bad side effects and she told me it wasn't the syn thyroid. I asked to be switched to an alternative and she said the only other option isn't nearly as good as syn thyroid. I believe she referenced a pigs thyroid being part of it.

She has never mentioned any other medications.


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## MisterGrubbs (May 19, 2013)

Went to new Endo today. I like him...and pretty straight forward. Assured me that thyroid replacement isn't causing me problems but suggested maybe the fillers or gluten in Synthroid is causing me issues. He has switched me from Synthroid to a replacement that is gluten free and I am starting a gluten free diet to see if that is the culprit.


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## MisterGrubbs (May 19, 2013)

Tirosint is the medication.


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## joplin1975 (Jul 21, 2011)

I've heard a lot of people have success with tirosint. Good luck!


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## MisterGrubbs (May 19, 2013)

joplin1975 said:


> I've heard a lot of people have success with tirosint. Good luck!


Thanks! I'll update in two weeks or so...although I wonder if I wasn't having a reaction to a filler in the synthroid. Started the tirosint today and had a great day.


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## allowingtoo (Mar 31, 2012)

I take Tirosint and really like it. What dose are you now taking?


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## MisterGrubbs (May 19, 2013)

allowingtoo said:


> I take Tirosint and really like it. What dose are you now taking?


150mcg. I was on 150mcg of synthroid and did a direct swap.


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## MisterGrubbs (May 19, 2013)

Might I ask what everyone's opinion on something is?

The Tirosint started yesterday. Still having bad back and chest pains today. Also noticing bad gas and diarrhea - I don't think the meds would have a negative side effect like this that quickly would it?


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## joplin1975 (Jul 21, 2011)

Oh, I had have atrocious gas and diarrhea after every dosage change. It happens within 24 hours of taking the meds. So I do think its very possible.

The back and chest pains could very well be related to being hypo...that may take some time.


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## allowingtoo (Mar 31, 2012)

Wait - didn't you *tell* your Dr you were only taking the 150 dose once every 3 days instead of once a day? He / they should have started you out on a MUCH lower dose IMHO.


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## MisterGrubbs (May 19, 2013)

allowingtoo said:


> Wait - didn't you *tell* your Dr you were only taking the 150 dose once every 3 days instead of once a day? He / they should have started you out on a MUCH lower dose IMHO.


I had gone back to taking it daily. I won't be making modifications to my schedule without doctors approval any longer.

The gas has never been a problem until I started synthroid.

Chest pains didn't exist until synthroid either. They feel different now than they did. Its scaring me badly but after all I've gone through I was told I have a severe health anxiety and it is my mind messing with me.

I am, truthfully, scared right now.


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## bigfoot (May 13, 2011)

MisterGrubbs said:


> Its scaring me badly but after all I've gone through I was told I have a severe health anxiety and it is my mind messing with me.
> 
> I am, truthfully, scared right now.


I hear you -- it's hard not to want answers and get things fixed as quickly as possible. I think that's a big area where many docs miss the target, or blatantly have no bedside manner. Somebody strolls in to their office with a litany of legitimate, ongoing health complaints and they are viewed as a hypochondriac. Then the person is given an RX and the doc sends them packing. When they call back to the office with a problem or interaction from the RX, they are treated as a kook. (I know, it happened to me.)

Of course you are dealing with anxiety -- you've been going through a lot. But more than likely it is a temporary thing, and is very closely tied to the fluctuating thyroid, testosterone, and whatever else is going on. I get anxiety frequently, but I can tell you that on days when everything is aligned with thyroid / testosterone, it is non-existant. The trick is finding that sweet spot and maintaining it. Once that is achieved I think a lot of these signs and symptoms will disappear.

The gas, diarrhea, back aches, muscle aches, and so forth sound familiar to me, too. Every time I make a dose adjustment (with thyroid or testosterone), there are weird happenings. But I would keep an eye on the chest pains -- that is something you would want to let your doc know. And if it's significant enough, say over a weekend or something, I would seek immediate help at an urgent care or ER. And if you aren't confident in your doc, look for another. It's important to have someone helping you who understands all of this stuff. Hormones are very, very complicated.


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## MisterGrubbs (May 19, 2013)

bigfoot said:


> I hear you -- it's hard not to want answers and get things fixed as quickly as possible. I think that's a big area where many docs miss the target, or blatantly have no bedside manner. Somebody strolls in to their office with a litany of legitimate, ongoing health complaints and they are viewed as a hypochondriac. Then the person is given an RX and the doc sends them packing. When they call back to the office with a problem or interaction from the RX, they are treated as a kook. (I know, it happened to me.)
> 
> Of course you are dealing with anxiety -- you've been going through a lot. But more than likely it is a temporary thing, and is very closely tied to the fluctuating thyroid, testosterone, and whatever else is going on. I get anxiety frequently, but I can tell you that on days when everything is aligned with thyroid / testosterone, it is non-existant. The trick is finding that sweet spot and maintaining it. Once that is achieved I think a lot of these signs and symptoms will disappear.
> 
> The gas, diarrhea, back aches, muscle aches, and so forth sound familiar to me, too. Every time I make a dose adjustment (with thyroid or testosterone), there are weird happenings. But I would keep an eye on the chest pains -- that is something you would want to let your doc know. And if it's significant enough, say over a weekend or something, I would seek immediate help at an urgent care or ER. And if you aren't confident in your doc, look for another. It's important to have someone helping you who understands all of this stuff. Hormones are very, very complicated.


This is a new doc that I like a lot more than my last! I have had chest pains ongoing for almost a year. I have seen a heart doc...said I was fit as a whistle.

These pains feel different. And reading the side effects didn't help ease my mind.


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## MisterGrubbs (May 19, 2013)

I should add that the plains come and go. My chest will kill me for two hours then be okay for a while then back again - I think that's why they're dismissed as anxiety.


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## abymom99 (Apr 15, 2013)

MisterGrubbs said:


> I should add that the plains come and go. My chest will kill me for two hours then be okay for a while then back again - I think that's why they're dismissed as anxiety.


Have you been checked by a GI for reflux/GERD? I have recently been diagnosed with GERD and they're telling me that is likely causing all of my chest pain. Mine isn't typical of reflux pain (burning at the stomach/esophogus junction). I have a very bad crushing sensation often and it feels like my center chest is being squeezed by a fist really hard. I also have a lot of deep pains that vary in location from time to time. They think it's possible I might have esophogeal spasm as well, but we're getting my GERD under control first before going through more testing.

By the way, I do have mitral valve prolapse and recently got all of the routine tests done by my cardio, just to be sure. He said my heart is fit as a fiddle as well.


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## MisterGrubbs (May 19, 2013)

abymom99 said:


> Have you been checked by a GI for reflux/GERD? I have recently been diagnosed with GERD and they're telling me that is likely causing all of my chest pain. Mine isn't typical of reflux pain (burning at the stomach/esophogus junction). I have a very bad crushing sensation often and it feels like my center chest is being squeezed by a fist really hard. I also have a lot of deep pains that vary in location from time to time. They think it's possible I might have esophogeal spasm as well, but we're getting my GERD under control first before going through more testing.
> 
> By the way, I do have mitral valve prolapse and recently got all of the routine tests done by my cardio, just to be sure. He said my heart is fit as a fiddle as well.


I have had an upper endoscopy done. All is well and no gerd according to them.


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## allowingtoo (Mar 31, 2012)

MisterGrubbs said:


> I had gone back to taking it daily.


Yes but for how long? You were just here saying you were taking it every three days. Did you tell your Dr how big a jump your old Endo made in your medication? From the 112 to the 175 without the labwork? That's what I thought was odd.


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## Andros (Aug 26, 2009)

MisterGrubbs said:


> I should add that the plains come and go. My chest will kill me for two hours then be okay for a while then back again - I think that's why they're dismissed as anxiety.


Have you been checked for Costalchondritis (Teitze's Syndrome) and/or Pleurisy?

Many of us w/thyroid disease and Lupus suffer from the above. Very bad chest pains.


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## MisterGrubbs (May 19, 2013)

allowingtoo said:


> Yes but for how long? You were just here saying you were taking it every three days. Did you tell your Dr how big a jump your old Endo made in your medication? From the 112 to the 175 without the labwork? That's what I thought was odd.


Yes. He said it was pretty ridiculous especially considering she had not done test results.


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## MisterGrubbs (May 19, 2013)

Andros said:


> Have you been checked for Costalchondritis (Teitze's Syndrome) and/or Pleurisy?
> 
> Many of us w/thyroid disease and Lupus suffer from the above. Very bad chest pains.


I have not been tested for any of this, including Lupus.

At my 6 week check up they are doing a full blood panel.


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## bigfoot (May 13, 2011)

MisterGrubbs said:


> Yes. He said it was pretty ridiculous especially considering she had not done test results.


That is putting it mildly.


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## MisterGrubbs (May 19, 2013)

bigfoot said:


> That is putting it mildly.


I agree. There is a reason I quit gong to her.


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## sickofbeingfat (Apr 30, 2013)

Hello,

I just thought I should say that I fully agree with you about the anxiety you say you feel. I have been both very hper and hypo in the past and every time my tsh goes down (hyper) I will feel anxious, heck that is usually the first thing I feel when my tsh goes down. I had thyroid storm before (tsh was less than .01 then) and let me tell you I seriously was a walking panic attack! What made it worse was back then I didn't know it was my thyroid and that made it more scary, this was a few years ago. Now when I have a slight hyper bout and feel anxiety I know it's just my thyroid and it will pass. You need to tell yourself this when you feel anxiety just remind yourself that it will pass ad you will be ok. On the flip side everytime I go hypo I feel depressed.

Another thing I thought I would mention is that maybe the chest pain/back pain you feel is also from your thyroid. I remember when I went from very hyper to hypo in less then a few weeks I did have pretty bad chest pain and I was also very short of breath. I mean think about it my heart rate went from 140 bpm to 55 bpm so that is a pretty big drop fast, of course I felt like ****.

Another thought is that maybe your thyroid is "trying to kill itself or basically burn itself out" so your thyroid hormones are all out of wack and if you are on medication at this time it could be making that worse. You might want to get labs done every 6 to 8 weeks for a while to see what's going on exactly with your tsh.

Most importantly your doctor should be trying to figure out why your have chest pains. When I was having chest pains and was short of breath from when I was very hper and again when I went hypo both of those times I went to the ER and was admitted into the hospital. And both times I was given and chest x-ray, EKG, and an echocardiogram. Thyroid issues can cause heart arrhythmia afibs, and even heart failure. I would demand your doctor do a basic chest x-ray and an echocardiogram.

Also the cartilage between your ribs could be inflamed, have you been coughing a lot, or been lifting weights, etc? That can cause this.

Another thought is you could be having pleurisy but the chest x-ray would be able to see this.

Hope this helps, I am not a doctor these are just things I have dealt with over the years.

I am sorry you have been going through all or this  I remember when I went through similar thyroid issues it was hell. Just remember eventually you can feel normal again you just need to find the correct doctor and gvie yourself time, to get your hormones all in balance. Please let us know how everything turns out for you and if you get any answers!

Laura :hugs:


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## MisterGrubbs (May 19, 2013)

sickofbeingfat said:


> Hello,
> 
> I just thought I should say that I fully agree with you about the anxiety you say you feel. I have been both very hper and hypo in the past and every time my tsh goes down (hyper) I will feel anxious, heck that is usually the first thing I feel when my tsh goes down. I had thyroid storm before (tsh was less than .01 then) and let me tell you I seriously was a walking panic attack! What made it worse was back then I didn't know it was my thyroid and that made it more scary, this was a few years ago. Now when I have a slight hyper bout and feel anxiety I know it's just my thyroid and it will pass. You need to tell yourself this when you feel anxiety just remind yourself that it will pass ad you will be ok. On the flip side everytime I go hypo I feel depressed.
> 
> ...


Laura - thanks for the response! I have been on tirosint for a week and a half now and overall my anxiety has virtual disappeared. My chest pains are less frequent but still very bad.

I have been checked for heart issues - stress test and an echo cardiogram. Both normal.

I am having my gallbladder checked next Friday to make sure its not part of the culprit.


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## MisterGrubbs (May 19, 2013)

Is this board still active? If so, I'd love to update this thread some 3 years later and let everyone know what's going on as well as get some advice/input?


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## MisterGrubbs (May 19, 2013)

Screw it, let's just go for it and hope some of you are still listening! My anxiety chats are hard to deal with because no one there understands thyroid. I've tried to somewhat educate myself more, but whether or not I've been successful is still unsure.

It's been a few years, so lets fast forward to now and what's been going on, shall we?

29 years old now, still a male (lol) but I no longer live in Georgia. I packed my stuff and left(literally, just packed it up) and headed out for Oklahoma City. I will say, it's probably one of the best choices I've ever made in my life as far as self-help goes. It's been an all around positive experience. Even found a decent woman 

After all was said and done from earlier, I ended up "steady" on 150mcg of Tirosint. My anxiety eventually went back through the roof. Chest pains lessened, but still existed. It was bearable, but no real means of life. Anti depressant daily, xanax frequently(although not daily, they scare the crap out of me). My tested Free t3 and t4 values were good, but TSH never went below 4.8, and was now back to almost 10

Fast forward again to several months ago. I went to see a new endocrinologist and started our visit with the statement "you have 6 months to figure this crap out, or I'm coming off the thyroid meds". His response absolutely blew my mind. "So stop taking them." What?!?!? Well, interesting, because I've always been told not to do this. He said he'd prefer to step me down to 112 and then to 88mg and see how my body reacted, but it was ultimately my choice that it wouldn't kill me, albeit I'd probably be very uncomfortable to stop cold turkey. That was 3 months ago

Fast forward, yet again, to today, April 11th 2016. I have been off my thyroid meds for over 2 months now. I was tested twice. After a month, ft3 and ft4 were still acceptable, but TSH had risen to 16. Checked again about 3 weeks ago, ft3 low, ft4 okay, tsh 20, so my body definitely has a thyroid deficiency and needs some help. BUT, what I will say is that I'm also no longer taking anti depressant/anxiety medications. While my anxiety has not completely exited my life, I will say that it has decreased significantly. I may have to take a half a xanax twice a week now just to avoid aggravation. As with everyone else, some days are better than others, but overall it's still an improvement from being on Tirosint or any other T4 synthetic hormone.

Heres what I noticed :

About a week after stopping completely (half life, I'm guessing) I began heart palps. Badly. Got checked out, doctor said I was the healthiest fat kid he'd seen in the heart department, which just correlates what I've been told in the past. Great news! After about two weeks of dealing with palps, they minimized. I still have them occasionally, but they're not as bad. Heart doctor is 100% sure it's an anxious reaction to something going on. Nothing wrong with my heart nor my heart's rhythm.

At a month off MAN I felt great! Anxiety...damn near gone! I wasn't napping during the day anymore. Felt better and better. Personality was returning

Now : meh, not so much. I still feel overall better(in my opinion) than I did on Tirosint, BUT things have changed. I'm not lethargic, my brain fog has returned(I've dealt with it for a long time, it started before I went on T4 Replacement and never got better...) and I'm having joint pains. Anxiety is on the rise, some, and I'm very "blah" on things. No real motivation. I'd also like to note that(no disrespect here ladies, because it's mostly women who are affected!) I feel like a woman going through menopause. EXTREME mood swings(sounds can set me into a rage) and I'm very bloated. I've gained 3lbs since coming off(which isnt much) but I look like I'm 50lbs heavier.

Basically, from what I can tell, life isn't great off T4 replacement, and it is downright not fun when on it. So what am I possibly left with? Well, I went to searching. I've heard great things about people in similar situations switching to Armour or Nature-Throid. Researched them. Armour has too many fillers, but Nature-Throid is something I'm very similar in. Issue? Insurance won't pay for it, and most endo's won't prescribe it.

Called my endo today and guess what - he actually said he'll prescribe it and we can try it out! I'm beyond excited at this point in time. I've basically begged to treat symptoms as opposed to chasing TSH numbers. When the numbers are correct(using t4 replacement) I feel like absolute hell. Agoraphobia is not fun, my friends!

I would love some feedback from others who might have been through a situation like mine. We are all different, but I'm wanting to try a more "holistic" point of view at this point. Hell, it's all I've got left!

Looking forward to feedback, and I apologize for writing a book 

Ryan


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## WhatHappened (Nov 12, 2015)

Ryan, hey, and welcome back. There are always boys around, I guess we're rare, but we ain't exactly unicorns. Have you got your latest blood work and ranges? Tsh, free t4, and free t3. And current dosages? (You are completely off t4?)

(And btw, I for one, am glad the board is still active and was here when I needed it. There ain't no place like this place, so it must be the place)


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## MisterGrubbs (May 19, 2013)

Woohoo! I am completely off.

My labs(when last read on 3/17 of this year, roughly 45 days off meds) were

FT3 3.50 Normal values are 2.00-4.40

FT4 0.77 Normal values are 0.93 - 1.70

TSH 20.40 Normal values are 0.27-4.20

So, TSH is way out of whack. Free T4 is low, Free T3 appears to be relatively good, although a tad "high" in the normal range. Still, not too bad.

Thoughts?



WhatHappened said:


> Ryan, hey, and welcome back. There are always boys around, I guess we're rare, but we ain't exactly unicorns. Have you got your latest blood work and ranges? Tsh, free t4, and free t3. And current dosages? (You are completely off t4?)
> 
> (And btw, I for one, am glad the board is still active and was here when I needed it. There ain't no place like this place, so it must be the place)


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## WhatHappened (Nov 12, 2015)

Based on what you are saying, you'really pretty hypo. Can you edit the post to show the ranges. When do you start armour?


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## MisterGrubbs (May 19, 2013)

Edited with ranges


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## joplin1975 (Jul 21, 2011)

Well...

I don't mean to be a Debbie downer, but I bet you will have more anxiety on Armour. I was like you - a high TSH, low free t4 and decent t3. I did awful on t4 meds and never did the NDT route.

Did you ever get that nodule biopsied? Have they ever tested TSI?


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## MisterGrubbs (May 19, 2013)

You're speaking foreign to me here. No clue what TSI is. I had the nodule biopsied about two years ago. No cancer or anything of that nature.

You never tried NDT, so what makes you assume I'll have more anxiety with it? Because my T3 isnt crazy?

Also, you said you did awful on T4 meds, but your profile says you're on synthroid. I see your numbers are better - how are you feeling? What changed? What meds?

Much appreciated

Also, I'm more interested in NatureThroid than Armour. From what I've read, it seems to be more consistent.



joplin1975 said:


> Well...
> 
> I don't mean to be a Debbie downer, but I bet you will have more anxiety on Armour. I was like you - a high TSH, low free t4 and decent t3. I did awful on t4 meds and never did the NDT route.
> 
> Did you ever get that nodule biopsied? Have they ever tested TSI?


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## joplin1975 (Jul 21, 2011)

I think you may have issues on NDT because your free t3 is proportionately higher than your free t4. That's how my labs always were/are. Unlike most thyroid folks, I tend to convert t to t3 very well. So adding more t3 into the mix doesn't strike me as the answer. But...it's always worth a try.

TSI is a stimulating antibody. If you have TSI, it becomes crazy hard to stabilize on thyroid meds. Your labs will look consistently hypo, but you will feel (thanks to the TSI) hyper. The anxiety, heart palps, all that stuff sounds so, so familiar.

What changed for me, honestly, was I had surgery. I don't have a thyroid. So, I don't have TSI. Without a thyroid and TSI, I'm thriving on synthroid, yes. But while i had my thyroid and was on synthroid, I was MISERABLE. My husband would tell you it was like living with a meth addict. I was up all night long, I was erratic, and felt like hell.

Anyway, you might not have TSI, but if you do, it would explain a fat ton...so you might want to consider it.


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## MisterGrubbs (May 19, 2013)

joplin1975 said:


> I think you may have issues on NDT because your free t3 is proportionately higher than your free t4. That's how my labs always were/are. Unlike most thyroid folks, I tend to convert t to t3 very well. So adding more t3 into the mix doesn't strike me as the answer. But...it's always worth a try.
> 
> TSI is a stimulating antibody. If you have TSI, it becomes crazy hard to stabilize on thyroid meds. Your labs will look consistently hypo, but you will feel (thanks to the TSI) hyper. The anxiety, heart palps, all that stuff sounds so, so familiar.
> 
> ...


Interesting

Picked up my Nature Throid today. 37.5 mcg. Going to see how it does for me on low doseage before we try increasing any!

I'll read up more on TSI and see if maybe it's a test we can run on the next round of testing(which is June 3rd)


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## MisterGrubbs (May 19, 2013)

I'm on day two of Naturethroid. Small doseage at 37.5. Pill split in half, take one half in morning, one in afternoon.

Is it possible to be feeling the effects of this medication already? If so, here's what I've noticed

Increase in energy, slightly. I've had some anxiety, but it hasn't been panic. It's been relatively easy to deal with, in all reality, but there are 15-20 minute timeframes I'm severely anxious.

If not, my mind is playing tricks with me


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## MisterGrubbs (May 19, 2013)

Update. Still not sure if it absorbs fast enough to where it's the meds and not just me. I'm super anxious, mild chest pain.

I'm considering stopping it already. A bit scared


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## joplin1975 (Jul 21, 2011)

T3 can be fast acting. It can also take some time to adjust to the meds. Hopefully someone who's been on NDT will be around soon!


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## MisterGrubbs (May 19, 2013)

I took my second dose tonight. If things dont get better tomorrow(I had to take a xanax tonight to knock the edge off) I will be discontinuing until I go see endo.

On a positive note, I found an endo locally who actually tests cortisol, TSI, and everything mentioned in these threads and treats based on a mixture of labs with the symptoms. Scheduling their earliest date come this Monday. And they have great reviews! YAY

BUT

They're booked for a solid 2 months. Which leaves me 2 months of WTF do I do until then.


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## creepingdeath (Apr 6, 2014)

Everyone is different but I can tell you that synthetic T4 only made me feel as if I was being poisoned.

I had the High anxiety also and those chest pains too along with breathing issues I didn't have before taking synthetics.

I was at a point where I actually had thoughts of jumping off a bridge to end the torment.

All the doctors and Endo's said there was absolutely no way the T4 only was causing side effects.

Well I finely found a Doctor who proved them wrong and let me try Desiccated thyroid and I feel 300% better.

He is an MD who is older and pushes that computer out of the way and asks me questions while looking at me not that monitor. He diagnoses with his brain "experience" not some data base.

I am by far not normal but I don't want to end it all anymore...........

I found hope in this old fashioned medication.

Don't give up so soon.

It takes more time than they tell you to get all that nasty T4 poison out of your system.

Hang in there "it does get better.


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## visc (Feb 22, 2014)

Here's my short story.. 24 y/o male.

I wasn't diagnosed when I was 22... But I had symptoms of anxiety and depression. So they put me on pych meds.

Well then they finally found out I had thyroid disease after a million dollar work up over the course of three years. Yikes!

They start giving me Synthroid.. Well would you believe it?? I had more and more panic attacks and anxiety..

So I go to my doctor, and she asks well let's take you off that anti depressant.. I was like why? She said, because your thyroid hormone is returning to normal so your serotonin is increasing naturally. No need to make it available for your brain with an SRI..

A month or so later, I felt much better... My anxiety went down a ton. I was also off the Xanax soon after diagnosis.


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## Lovlkn (Dec 20, 2009)

> My labs(when last read on 3/17 of this year, roughly 45 days off meds) were
> 
> FT3 3.50 Normal values are 2.00-4.40
> 
> ...


Your FT-3 which is already in a good place which we prefer to be somewhere between 1/2-3/4 of range or 3.2-3.8

Increasing thyroid hormones with T3 only is going to go directly to raise your FT-3 and likely cause you additional anxiety.

If it were me, I would try a low dose of T4 only medication, like 25mcg.

I'm curious to know what supplements, vitamins or other medications you are taking.

When is the last time you have had a TPO, TSI, Thyroglobulin antibodies test and also an ultrasound?


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## MisterGrubbs (May 19, 2013)

Lovlkn said:


> Your FT-3 which is already in a good place which we prefer to be somewhere between 1/2-3/4 of range or 3.2-3.8
> 
> Increasing thyroid hormones with T3 only is going to go directly to raise your FT-3 and likely cause you additional anxiety.
> 
> ...


I have not had an ultrasound in 3 years. That is on the to-do list.

Don't recall ever being tested for TSI and, honestly, I dont know what TPO is and I dont recall being tested for thyroglobulin either.

I am now back on my 50mg of Zoloft(it's been helping a TON might I add) and 25mcg of Levoxyl. We are starting it back up very slowly.

I take no other medications whatsoever.

Thanks

Ryan


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## MisterGrubbs (May 19, 2013)

Quick update - Since all of this, I've felt a "knot" in my throat on the right side. Going in tomorrow morning for them to check it out, willing to bet that I'll be getting scanned and a biopsy.


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## MisterGrubbs (May 19, 2013)

All was well - for those who are checking in on this.


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## WhatHappened (Nov 12, 2015)

Thanks for updating. So all is better? (In general)


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