# abrupt-onset anxiety + other symptoms. Endo visit tomorrow--what should I ask?



## Jamesie (Aug 14, 2011)

I'm new here, adult female being treated for prolactinoma (treated 2 yrs) and hashi's (treated 1 year). Endo is usually good about listening to my symptoms and treating those, rather than the labs.

On 7.31 had abrupt onset of these symptoms:

-anxiety/panic
-fatugue
-cold/heat intolerance
-lack of appetite/nausea
-cognitive difficulty
-some postural hypotension
-VERY emotional

Called my endo, who increased my levothyroxine (generic) from 50 to 75 mcg. Things have gradually gotten worse--had a huge panic attack on the 4th. Visited PCP who prescribed low-dose Ativan (didn't help) and tested my T4 (it was in the high normal range--they didn't give me the exact #). I have an appointment tomorrow with my endo.

Does anyone have any advice/ suggestions for tests I should get? The anxiety is new and the worst symptom, but the cognitive difficulty is also troublesome. I also feel kind of like I'm swinging from hyper to hypo, completely unable to function for the past 2 weeks.

Thanks!


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## bigfoot (May 13, 2011)

Jamesie said:


> I also feel kind of like I'm swinging from hyper to hypo, completely unable to function for the past 2 weeks.


I went through this a few months ago, prior to being DX'd with Hashi's (via antibody tests) only being told I was hypothyroid. I was on generic 50 MCG of Levothyroxine for roughly a year and all of a sudden I had very similar symptoms to you. In fact, I would say they were exactly the same -- it sounds like I am reading my own narrative. From what I understand, yes, you can swing back and forth between hyper and hypo with Hashi's.

Despite having been on the 50 MCG for a year, it just all of a sudden felt like the bottom fell out of everything. The reality is probably that things were sliding slowly over time, I just either didn't notice or learned to cope/adjust to the small changes.

When I went to the doctor, my TSH had started to climb towards the 3.xx range, and a couple of months later it was solidly in the 3.xx range. Now, finally after being on 75 MCG, it has started to retreat back into the 2.7x range. My doc has just bumped me up to 88 MCG and hopefully that forces the TSH down even further.

I know folks mention here and some docs mention that ideally your TSH should be in the 1.0-2.0 area to really feel decent with Hashi's. Should help a couple of things: keeping the autoimmune thyroid antibodies suppressed and helping your remaining thyroid to work optimally. Can you post your recent lab work and ranges? That might help us figure things out.

Take it easy and don't try to overdo it. Things will get better! :anim_32:


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## bigfoot (May 13, 2011)

Gotta run... hopefully Andros will be along shortly to list out some tests for you to ask about... good luck tomorrow!


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## Andros (Aug 26, 2009)

Jamesie said:


> I'm new here, adult female being treated for prolactinoma (treated 2 yrs) and hashi's (treated 1 year). Endo is usually good about listening to my symptoms and treating those, rather than the labs.
> 
> On 7.31 had abrupt onset of these symptoms:
> 
> ...


Hi there Jamie!! I am sorry to hear of your troubles!

My first thought after having read your post is that maybe you are flipping over to the hyper side. I suspect this is so.

Tests I recommend and also I recommend you get copies so you can post lab results and the ranges here when you would like to do so.

TSI (thyroid stimulating immunoglobulin),TPO{Thyroid Peroxidase Ab}, (antimicrosomal antibodies, http://www.nlm.nih.gov/medlineplus/ency/article/003556.htm) 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/

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://www.medicineonline.com/topics/t/2/Thyroid-Stimulating-Immunoglobulin/TSI.html

And here is info on why you would do well to get the FREE T3 and the FREE T4, not T3 and T4.

Free T3 and Free T4 are the only accurate measurement of the actual active thyroid hormone levels in the body. This is the hormone that is actually free and exerting effect on the cells. These are the thyroid hormones that count.
http://www.drlam.com/articles/hypothyroidism.asp?page=3

Let us know how your appt. goes.

And welcome!


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## Jamesie (Aug 14, 2011)

Thanks Bigfoot! (I am a sasquatch fan, so love your sn!)

I'm sorry you've had to go through this, too! For the past year, I've been like "this thyroid stuff is a piece of cake!"--guess I spoke too soon...

Unfortunately, I've been a bad patient and haven't kept my lab results recently (wasn't having any problems--aside from a couple of too-fast dose increases--until now). I do know that in my last labs a month ago, T4 was slightly low (and I was feeling tiredish), but not enough to increase meds. I *think* TSH was in the normal range. I will ask tomorrow if they can photocopy my last few labs for me.

After lurking on here a while, I'm planning to ask if I've had TSI checked, as well as free T3/T4.

Thanks again!


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## Jamesie (Aug 14, 2011)

Thank you, Andros!

I will check those links--they look really helpful.

Will post my results tomorrow


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## Andros (Aug 26, 2009)

Jamesie said:


> Thank you, Andros!
> 
> I will check those links--they look really helpful.
> 
> Will post my results tomorrow


You are very welcome and we will look forward to hearing from you about how it went with the endo.

"I hope good!"


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## bigfoot (May 13, 2011)

Jamesie said:


> I'm sorry you've had to go through this, too! For the past year, I've been like "this thyroid stuff is a piece of cake!"--guess I spoke too soon...


Yup, just when you think you have it all figured out and squared away... WHAM! Gotta learn to be cautiously optimistic... LOL

Let us know how it goes! Good thoughts headed your way for your appt. 

Other miscellaneous random thoughts from a fellow newbie:
* Might want to avoid soy and iodine-containing products.
* Gluten-free foods can help reduce inflammation.
* Same goes for a fiber-rich, whole-grain diet (Oatmeal, whole grain breads/cereals, lots of veggies, fruits, etc. Just gotta watch labs, as the fiber can reduce the absorption of thyroid meds. May need med increase.).
* Excess stress or exercising really hard may trigger a flare-up.
* Stay well hydrated with lots of water. Avoid soda, coffee, and caffeine.
* A good daily multivitamin, some Selenium (200mcg), and quality fish oil (e.g., Carlson's liquid) may help as well with keeping things in balance.
* May wish to take thyroid meds at night (3-4 hours after eating) to increase effectiveness. Studies about how digestion slows at night when sleeping, thereby boosting thyroid med absorption.
* Be consistent in timing of when you take thyroid meds.
* Avoid taking calcium or eating calcium-rich foods within 3-4 hours of taking thyroid meds.


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## Jamesie (Aug 14, 2011)

Thanks for the support! 
And thanks for the suggestions, bigfoot! It so happens that I do all of those already except selenium and taking at night (I take a BCP with estrogen).

Apparently my thyroid levels are "perfect"--I asked about TSI, etc, but endo looked at me like I was cray cray and said that my Free T4 would be high if I had any other thyroid issues. I also asked if any other endocrinological issues could cause my symptoms, and he said no, and that the sudden onset pointed to a different (non-endo) cause. For the first time, I felt like he really didn't take me (and my symptoms) seriously--I mentioned that I'm unable to function, and he said "then it simply can't be your thyroid." Cried for an hour or two after that--may be looking for a new endo...not because he didn't "fix" me; just because I felt he was in a hurry/didn't care and he has never been "holistic" at all (hasn't told me about any dietary changes/supplements, etc).

Talked with my GP, he got me in today and ran some general tests (CBC, basic metabolic panel)--took some time with me and gave me a clean bill of health. Said I should go see a psychiatrist and think about getting on some anxiety meds, and that these symptoms are indicative of my serotonin levels bottoming out? (don't know why they would do that--no outside stressors right now and been very healthy, but if it's the last option I'm willing to try).

One more thing: I'm taking generic levothyroxine. Is there anyone who's had my symptoms on the generic and switched to brand-name with better luck? I've been doing fine on generic all along, but just checking...

Today's levels:
TSH: 0.89 (0.49-4.67)
Free T4: 1.45 (0.71-1.85)
Free T3: 3.22 (2.30-4.20)

From 7/15 (I was feeling tiredish here)
TSH: 2.11 
Free T4: 1.34

From 4/05 (I was feeling great here)
TSH: 0.91
Free T4: 1.39

Thanks for your sympathy! It means a lot that someone understands how I feel


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## bigfoot (May 13, 2011)

Sorry to hear about your endo appointment not going so well. I think most of us on here have at least 1 or 2 doctors we've tried that didn't work out in the long run. Heck, maybe 3 or 4.

Your TSH and Frees look pretty good to me, but I'm no expert. It really is hard to get the docs to look closer when your numbers are in the "normal range". Did they ever run your thyroid antibodies? Maybe they are really high and responsible for some of this.

1) Something that jumps out at me -- it's only been a couple of weeks since your dose was increased from 50 MCG to 75 MCG. Ideally it takes about 3-4 weeks for the medicine to stabilize, and ultimately 6-8 weeks to become fully active. In the meantime you wind up on this roller coaster ride of two steps forward, one step back. Maybe you need a little more time.

2) Another suggestion -- adding something like Cytomel T3 to your arsenal. There may be some room for improvement there. Your FT3 looks to be in the middle of the range. Who knows if that will come up a bit with your recent T4 increase, or perhaps you are one of those folks who don't convert so T4->T3 so well.

3) And yet another thought -- like you mentioned, you're on a generic levothyroxine. There are about 8 manufacturers of it and you might be getting switched up each here and there from your pharmacy. They can vary up/down with a 10% potency window. Something better would be a brand-name like Synthroid, Levoxyl, etc. More consistency and stability is always a good thing. Might as well eliminate as many variables as you can.

IMHO, those three things should be addressed first. (In fact, I am trying to do this as well.) It's hard to resist the urge of anxiety/depression meds being the next quick "fix". You get desperate to where you'll try anything just to feel better. If the doc said eating dirt would help we'd probably all be doing it.


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## Jamesie (Aug 14, 2011)

Thanks once again, bigfoot. You are the best!

Yeah, my endo is very factual and tends to treat based on symptoms (like I mentioned above) which is good, but he doesn't seem to be big on the caring/educating side of things (he never remembers what I do for a living, for instance). The place I go to is like a factory--20 or so doctors, and you do your labs right there. Very convenient, but not any personal care. I think I'll ask my nurse friends if they know anybody--heck, I might even find someone with empathy! Lol

I know I tested positive for hashi's antibodies, which is why I was dxed with hashi's in the first place (one good thing about my present doc--I was being treated for the prolactinoma and he found the antibodies even before the T4 started to fall, so I never was symptomatic).

I'm supposed to go back for labs in 6 weeks, so I'll ask about the T3 then. Hopefully it'll be a bit higher, tho I don't think I've had a T3 in the last year or so, so no reference for it.

Thanks again! I will de-lurk to update once things start changing (hopefully soon!)


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## bigfoot (May 13, 2011)

Always nice to find a doctor who has enough time to listen and treat you as a patient, not a number.

I think if you can find a doc who is willing to test and dose your thyroid meds to keep you in the sub-1.0 range where you were before (and feeling good), you will be doing awesome.

Looking forward to your update! Good luck in the Dr. search! :anim_32:


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## flgrandmama (Aug 9, 2011)

I would agree that taking the name brand synthroid was better for me than the generic. Hope that helps!


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## Andros (Aug 26, 2009)

flgrandmama said:


> I would agree that taking the name brand synthroid was better for me than the generic. Hope that helps!


I also agree!

Welcome to the board; please make yourself at home!


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