# Hashi's, swollen lymph nodes, and worried!



## BlindMag (May 17, 2013)

Hey all!
So, I've been managing my Hashi's kinda ok up until this year. (History - diagnosed in 05, no nodules, but plenty of antibodies) This year has been weird, health-wise.

In November I noticed a tiny swollen lymph node below my collarbone. No biggie, probably a cold. I also gained a ton of weight. :/

By February, the lymph node grew a tiny bit, but it's still barely palpable, so not a huge deal. Then I got the flu which took me out for two weeks. After that, I've been miserable - I'm exhausted, I have a sore throat all the time, and now, joint pain, Hurray. I went to the doctor and got tested for stuff - TSH was .25, T4 was on the lower end of normal, and T3 was 50 over the high end of the range. I was negative for lyme & mono, but had elevated serum cortisol (31.5) and crazy high cholesterol. I got some antibiotics in case the lymph stuff was a bacterial thing, and we lowered my armour dosage. I went on Weight Watchers, but I lost 2 pounds, and plateaued.

In April, I got about a dozen more swollen lymph nodes all along my collarbone, and I've missed work because I'm so tired. I keep forcing myself to do stuff like gardening, but it wipes me out for an entire day. I am completely intolerant to heat, and sweat so badly at night that I often have to move downstairs to a couch.

Last week I went back to the doc, and got more bloodwork done, and this time she ordered an ultrasound. I went in, and the lady did a ultrasound of two nodes, left, came back and said that the radiologist wants a scan of my entire neck, so they scanned everything from under my collar bone to the tip of my chin. She then told me to try not to worry while I wait for results.

So yeah, that's where I'm at. I'm currently waiting on results, but now I'm kinda freaked out. What on earth could be going on? I'm used to my thyroid being a roller coaster, but the fatigue, night sweats and lymph nodes are all new. Could it be thyroid cancer? I know it's a HORRIBLE thought, but part of me sort of hopes it might be just so I could get my stupid thyroid removed. I hate the up and down constant rollercoaster.

If anyone has any helpful thoughts, or similar experiences, I would like to hear them!  Thank you for reading my extremely long winded post! 

Maggie


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## joplin1975 (Jul 21, 2011)

I always say I view thyroid cancer as a blessing. It was much, much easier than Hashi's. 

It sounds like they are trying to rule out cancer, which is good that they are being thorough. You'll have to wait for the results. Do you know when you might get them?


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## BlindMag (May 17, 2013)

The radiologist said my doc will get the results after two business days, but my doctors office is notoriously slow in calling me, even when something comes back abnormal. I might give them a call Monday afternoon to see if they know anything yet. 

Maggie


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## Jezahb (May 17, 2012)

Be at least grateful they are taking it seriously and ordering the tests. Since being diagnosed I have had constant swollen glands in my neck and lower jaw, and each time I mention it to the doc she shrugs it off as "You must have a cold coming on". Yea, for a year apparently. :confused0006:

Keep us updated as I am curious to know if this is just an unusual but not harmful side effect of Hashi's. Lord knows there are enough annoying side effects as is!


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## abymom99 (Apr 15, 2013)

Yeah, sadly my endo never called me about my abnormal ulrasound findings. I had to go pick up a copy when I went back for my FNA (ordered at same time as ultrasound). And then it took them almost two weeks to give me the results from my biopsy. I picked those up after waiting a week because I figured they wouldn't call at all. It's so frustrating to have docs like that! But, this is why I'm now getting a second opinion. I also have enlarged lymph nodes but my endo wants to wait 6 months and see if there is any change. I'm really not comfortable waiting that long, and the ENT I'm going to see has a special interest in neck masses/lymph nodes. At least your doc seems pretty proactive, even if he/she is slow with the results!

Please keep us posted on the ultrasound report. Try to get a copy as well, as what they tell you over the phone may be more confusing than actually seeing the report yourself. Good luck!


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## BlindMag (May 17, 2013)

Thanks for the comments.  At least I'm not the only one who has doctors offices that for some reason don't report back on abnormal stuff. I've always heard that if something's wrong, they'll call you RIGHT AWAY, so I assumed that if I didn't hear anything, I was fine, but I'm learning that isn't always the case. 
I'm curious what they can tell with an ultrasound, and whether they'll just say everything looks "normal". The waiting is driving me crazy!

Maggie


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## joplin1975 (Jul 21, 2011)

BlindMag said:


> I'm curious what they can tell with an ultrasound, and whether they'll just say everything looks "normal". The waiting is driving me crazy!


What ever they say, ask for copies of the u/s report, ok?


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## Andros (Aug 26, 2009)

BlindMag said:


> Hey all!
> So, I've been managing my Hashi's kinda ok up until this year. (History - diagnosed in 05, no nodules, but plenty of antibodies) This year has been weird, health-wise.
> 
> In November I noticed a tiny swollen lymph node below my collarbone. No biggie, probably a cold. I also gained a ton of weight. :/
> ...


Maggie, you are in my thoughts and prayers for all of this. You could not be in better lay person's hands than on this board. We have a loving, caring, well-informed bunch of folks here.

Make sure you get a copy of your US read-out. Hoping for the best for you but you already know that a bunch of swollen lymph nodes do mean something and it is not to be discounted so we are all glad you are getting the US.


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## abymom99 (Apr 15, 2013)

Yes, the waiting is the hardest thing ever! And my mom kept saying the same thing, "no news is good news", but I told her, not with this doctor! Plus, my neurologist was the one who did my c-spine MRI back in March which first identified my nodule and he never to this day called to tell me. Luckily I just happened to be there for something else and picked up a copy of that report and saw it. I don't mean to scare you any more than you are already, just agreeing that there are a lot of docs out there that don't call when they're supposed to. 

As far as the ultrasound goes though, I don't think they'll be able to tell much other than size and shape and will compare that to what is considered "normal". My ultrasound just measured four nodes around my nodule and then called them all "prominent" and recommended biopsy. There weren't any details mentioned about them other than size. But I really don't know if lymph nodes can calcify or what else they can show on ultrasound. I'm hoping for the best for you though!


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## BlindMag (May 17, 2013)

Haha, well I just called to see if they had my results in and she said it didn't look like anything was in my file yet. She did add a note that I would like copies of everything mailed to me when it does come in though, so that's nice! 

Thanks for all the nice thoughts. I'm really glad I found this board! 

Maggie


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## BlindMag (May 17, 2013)

Well, I got my results. (Warning. Long Rant Ahead)

Voicemail this morning "Hello Maggie! Just calling to let you know your tests all came back fine! Your sonogram was fine, your thyroid is fine, but your A1C means you might have diabetes so you need to start exercising and go on a diet. All your allergy stuff was negative so you don't have any allergies. Thanks have a good day!"

ಠ_ಠ

I am not fine. I AM VERY FAR FROM FINE. I had to come in late to work this morning because I was too tired to move, and my throat was really sore. I found a new chain of lymph nodes under my right armpit yesterday. My collarbone lymph nodes, while not painful, are still there and haven't gone down in size. Maybe I'm in denial, or it's all in my head, but I really don't feel like I'm fine!!

So, after I calmed down, I called them and asked them to mail my results to me, along with a copy of the sonogram. Well, they CANT FIND the sonogram, so they're going to mail me my blood work and mail the sonogram when they find it.

After a half hour, I called them back and asked them to at least read me some of my results. I've gone from hyper (TSH of .025) to hypo (TSH of 3.39) and my T3 is through the roof (I'm going to post all the nitty gritty details in a thread in the Lab Results forum if you want to poke through all the details). My A1C and cholesterol actually went down, so I don't get the diabetes comment. My cortisol serum was higher than last time - it's 33 now. But apparently that's fine!

Once I get all of my blood work in the mail, I'm going to find an Endocrinologist. I'm really just gobsmacked at this point. If my bloodwork is all "normal" but I'm missing work from being so sick all the time, what am I supposed to do? What else can I do? 

Also, jeez, how am I supposed to exercise? Even just doing the dishes wipes me out - the thought of exercising makes me want to sleep for 3 days. I'm already on Weight Watchers so I don't know how else I can diet. It's in my notes that I'm on WW, too! Argh.

The hilarious cherry on the sundae? While I was on the phone with them, my husband got a call - his doctor just diagnosed him with Hyperthyroidism. Ahahahaha, awwww.


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## Jezahb (May 17, 2012)

Um, the new guidelines for TSH as far as I know say the normal range is from .3 to 3.0....so 3.39 is NOT normal! I would feel like crap at that level, I need to be around 1.00 or under to feel good at all. This doctor doesn't sound very aware of how to handle Hypothyroidism IMHO. I would switch for sure, and get a doctor who is willing to work with you to find you a TSH that feels good for you...not just "fits within normal range".

I will say that I have had swollen painful glands the entire time I have had Hashi's and my doctor did say that sometimes the elevated immune response to the Thyroid can cause swelling in the glands as they respond to the extra white blood cells like they would to an infection. So, just another instance of our bodies freaking out over nothing and making us feel worse. I was paranoid I had some undiagnosed dental issue since my glands popped up painfully on my jaw the worst...but hundreds in dental bills and an appt with a dental specialist who took a ct of my jaw showed that I was in great dental health. So it is just how my body is reacting to my thyroid being attacked


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## Airmid (Apr 24, 2013)

BlindMag said:


> Thanks for the comments.  At least I'm not the only one who has doctors offices that for some reason don't report back on abnormal stuff. I've always heard that if something's wrong, they'll call you RIGHT AWAY, so I assumed that if I didn't hear anything, I was fine, but I'm learning that isn't always the case.
> I'm curious what they can tell with an ultrasound, and whether they'll just say everything looks "normal". The waiting is driving me crazy!
> 
> Maggie


This reminds me of one horrible doctor I had in the south. She kept telling me everything was normal and never let me see anything.

So one day I got this call from the radiologist asking why I hadn't made an appointment for another CT of my pelvic area. I asked why when everything was normal. He said they found a suspicious, large multi-cell mass on my left ovary that needed to be watched.

I dropped the phone, literally. Thankfully it wasn't cancer but still, I wanted to throw something at her. So you aren't alone with doctors not saying anything or worse, saying it's fine when it's not.

I'm sorry about your test results. With the issues you're having it seems like it still could be related to your thyroid. Sadly, once you developed one autoimmune disease you seem to be an open door for more to come in and set up a party. I hope you get things straightened out and find a doctor more capable then this one.


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## Andros (Aug 26, 2009)

BlindMag said:


> Well, I got my results. (Warning. Long Rant Ahead)
> 
> Voicemail this morning "Hello Maggie! Just calling to let you know your tests all came back fine! Your sonogram was fine, your thyroid is fine, but your A1C means you might have diabetes so you need to start exercising and go on a diet. All your allergy stuff was negative so you don't have any allergies. Thanks have a good day!"
> 
> ...


Oh, boy!! Dear one; perhaps you need to see an ENT or an Oncologist. This is cause for great worry.

Oh, my gosh; you two have your hands full. Sending many prayers and good thoughts for both of you!!


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## BlindMag (May 17, 2013)

Thanks for all the comments.  I'm glad I'm not alone in doctors being all cagey about results. I wish it were the future where everyone could just instantly send everything to my email or phone already. ;D

After a few days of researching, I found a practice in my area (a few miles from my house!) who specializes thyroid and adrenal endocrinology, so I scheduled an appointment with them for June 3rd. I am definitely more calm now that I've found someone else to get an opinion from!

Husband is going to see the same guy - his GP suspects it's a very mild case of hyperthyroidism, but wants to cover all the bases just in case. 

thanks again!
Maggie


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## BlindMag (May 17, 2013)

Hooray - I got my sonogram findings and blood work in the mail, and it was definitely quite interesting - the radiology report says my post thyroidectomy findings seemed non cystic, but that a CT scan was recommended for the "palpable thickening" on my collar bone. But that everything seemed fine after the thyroidectomy.
...I've never had a thyroidectomy! I've never even had an FNA! So tomorrow morning I'll be calling my radiologist to ask to clarify - did I get someone else's results? Did my thyroid wander off? If it is my scan, how were they able to scan my entire neck without realizing I still have my thyroid? 
Of the results I expected, this was one I did not anticipate!


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## Jezahb (May 17, 2012)

BlindMag said:


> Did my thyroid wander off?


:anim_63:

That made me laugh. However, the apparent ineptitude of your doctors is no laughing matter. Did they get their degrees in a cracker jack box?! I hope you are able to switch to this specialist doc and I hope he is better than these guys...jeez


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## abymom99 (Apr 15, 2013)

If you find out it is your report, would you mind typing out the ultrasound report here? It's a lot more useful for this group to see the actual report written out word for word. Let us know what the radiologist says though. It sounds like it might be a mix-up or REALLY bad error. A radiologist should never "miss" a thyroid!  Good luck!!!


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## Octavia (Aug 1, 2011)

Perhaps with your results and your husband's results...your thyroid wandered off and is now residing in your husband's body instead???!!!


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## BlindMag (May 17, 2013)

Hahaha, that's where it went! 

I called, and they're going to check with the doctor and call me back. Here's the whole report:

"Exam: Ultrasound soft issue neck post thyroidectomy
History: Palp Lymph nodes per patient
Technique: Real-time scanning was performed of the neck in the area of palpable abnormality left side of the neck superior to the clavicle
Comparison: Thyroid Ultrasound
Findings: No abnormality in the area of palpable abnormality specifically no adenopathy identified. No cystic or solid mass is seen. The patient is status post thyroidectomy.

Impression: No abnormality in area of patient's palpable thickening recommend CT scan"

So if that is my scan, it sounds like there's not much going on? I wonder if they'd evaluate it differently if they knew I had my thyroid? So odd.


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## Octavia (Aug 1, 2011)

Yes, I would think they would (should!) evaluate things differently. And they should have seen a thyroid in there!


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## abymom99 (Apr 15, 2013)

It worries me that they stated that the exam was being done "post-thyroidectomy". What the??? It sounds like they gave you someone else's report to me. Please let us know when they call back. I'm SO curious to hear how this all comes out! hugs1


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## BlindMag (May 17, 2013)

Heh, ok, so I got a call from the manager, and apparently it's going to take some time to sort this out - they need to verify that it was my scan, and then if it was, have another doc re-evaluate it with the information that I do still have my thyroid. They will call me back on Tuesday with my actual results!  They were super nice about it on the phone, though!


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## StormFinch (Nov 16, 2012)

Lol of course they were super nice, they just figured out they were wandering blindly into malpractice land!


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## proud-armywife (Jul 29, 2011)

As I sat here and read through these posts all I could say is WOW.....WOW
It saddens me deeply that there is so many of us that need real help to deal with our symptoms and this is what we get in return. We are at the mercy of these docs and need real help...... I would love to find a doctor that makes me feel like they care, and they will try to help me get to the bottom of things..... I hope you find resolution quickly! Hang in there!


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## BlindMag (May 17, 2013)

Ok, so I got the whole story - apparently they only scanned the lymph nodes around my thyroid, but didn't actually scan my thyroid, which is why they didn't know it was there. The radiologist looked it over and said that yes it was definitely my scan, and that they stand by the original info that no adenopathy was identified, and that if I want to investigate further, I should get a CT scan of the "palpable thickening" area. So I guess that means the weird bumps aren't swollen lymphs nodes? Not entirely sure. Whatever they are, I have a few more since my last scan. I really wish I'd tested positive for mono, that would have explained so much!

So basically, I think my current strategy is to wait, try not to worry, and bring all of this stuff to my new endocrinologist on Monday the 3rd. I think the try not to worry thing will be the hardest part, heh.


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## Andros (Aug 26, 2009)

BlindMag said:


> Hahaha, that's where it went!
> 
> I called, and they're going to check with the doctor and call me back. Here's the whole report:
> 
> ...


Boy, am I confused here. I "really" am. Are they saying you had your thyroid out but you in fact have not?


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## abymom99 (Apr 15, 2013)

BlindMag said:


> Ok, so I got the whole story - apparently they only scanned the lymph nodes around my thyroid, but didn't actually scan my thyroid, which is why they didn't know it was there. The radiologist looked it over and said that yes it was definitely my scan, and that they stand by the original info that no adenopathy was identified, and that if I want to investigate further, I should get a CT scan of the "palpable thickening" area. So I guess that means the weird bumps aren't swollen lymphs nodes? Not entirely sure. Whatever they are, I have a few more since my last scan. I really wish I'd tested positive for mono, that would have explained so much!
> 
> So basically, I think my current strategy is to wait, try not to worry, and bring all of this stuff to my new endocrinologist on Monday the 3rd. I think the try not to worry thing will be the hardest part, heh.


That explains a lot! Well, on why they noted you had no thyroid anyways. I wish it could have given you more answers. Keep us posted after your endo appt on the 3rd and just try your best not to worry too much. I go in day after tomorrow to have an ENT look at my lymph node issue. I can't wait to get a second opinion on all of this myself!


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## BlindMag (May 17, 2013)

Andros said:


> Boy, am I confused here. I "really" am. Are they saying you had your thyroid out but you in fact have not?


Yeah, they mistakenly thought I was post-thyroidectomy, but it's still there, being annoying as always.


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## BlindMag (May 17, 2013)

I'm so excited, I get to see my new endocrinologist in the morning! I'm hoping I can get him to explain why my T3 is through the roof and hopefully order me a test to figure out my cortisol levels. It will also be nice to get another opinion on my weird swollen lymph nodes! Wish me luck


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## BlindMag (May 17, 2013)

Sigh.

So I didn't see the doctor. I got a migraine, which kept me up until 4am, until I finally took my migraine medicine hoping I could get enough sleep to make it to my appointment. I woke up two hours before my appointment, went and got dressed...and promptly fell back asleep on the couch.  My husband found me and woke me up a half hour after my appointment began, so I called, and yeah they can't see me today, and I owe them $100 for canceling my appointment. Fortunately they had a slot open for the following day, so I go in tomorrow at 9:15.

Ugh. Worst first impression ever. I really hope they take me seriously after this, but I'm not holding my breath. Maybe if I explain to them it was because of my health stuff? :/

Not the best way to start out the week!


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## Andros (Aug 26, 2009)

BlindMag said:


> Yeah, they mistakenly thought I was post-thyroidectomy, but it's still there, being annoying as always.


So you now see of course that the story they gave you makes no sense. Glad you are seeing another doctor today.

Good grief. They tried to cover their butts though; I will give them that!


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## BlindMag (May 17, 2013)

Hooray!

Saw my new endocrinologist today. He is awesome! He was friendly, and listened to me. He's not the biggest fan of Armour, but said if I like it, I can stay on it, or if I want, I can always try Synthroid and Cytomel and then switch back, but for right now we'll keep me on Armour. He looked at my numbers and upped my dosage so that I'm cycling between 120 and 90 each day, and said he'd like to keep my TSH towards the lower end. 
He said my high cortisol blood serum might just be stress, but since I have a couple other symptoms of Cushing's syndrome/disease, we're going to do an overnight dexamethasone suppression test, and then check my labs two weeks from now to see if a)I have Cushings, and b)to see if the higher thyroid stuff has started to help symptom-wise.  
He checked out my swollen lymph nodes and said they appear to be fatty deposits, which would be in line with Cushing's, but if we rule out Cushing's, he said to check back with my GP to get them looked at more closely, maybe a CT scan or something, since the ultrasound basically had zero information in it.

Yay! Cautiously optimistic that I will feel human again this year! 

Maggie


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## Andros (Aug 26, 2009)

BlindMag said:


> Hooray!
> 
> Saw my new endocrinologist today. He is awesome! He was friendly, and listened to me. He's not the biggest fan of Armour, but said if I like it, I can stay on it, or if I want, I can always try Synthroid and Cytomel and then switch back, but for right now we'll keep me on Armour. He looked at my numbers and upped my dosage so that I'm cycling between 120 and 90 each day, and said he'd like to keep my TSH towards the lower end.
> He said my high cortisol blood serum might just be stress, but since I have a couple other symptoms of Cushing's syndrome/disease, we're going to do an overnight dexamethasone suppression test, and then check my labs two weeks from now to see if a)I have Cushings, and b)to see if the higher thyroid stuff has started to help symptom-wise.
> ...


That certainly is more reassuring and I am much relieved. Good for you, Maggie. I know you are delighted and you will soon feel better. You were slightly under medicated and that can stress the adrenals big time.


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## abymom99 (Apr 15, 2013)

Very happy for you Maggie! Hoping for the best for you. hugs1


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## Claire Voyant (Jun 4, 2013)

Wow, just came across this and my heart bleeds for you. What a saga! How I hope your new Endo can get all this solved and you're feeling better very soon. Keep us posted, please


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## BlindMag (May 17, 2013)

Hrm. I'm on my 5th day of upped thyroid medicine, and I do not feel good. It wasn't a huge increase or anything, but I don't feel right. I haven't been sleeping well, even before I upped my dose, but it's gotten a little bit worse (staying up until 3-4 instead of 1-2).

The other weird thing is that I had a cold two weeks ago, and it seems to have come back. I don't have any actual cold symptoms, but I have a sore throat, and I'm sweating so badly that I've soaked through my shirt while sitting at my desk at work. Awkward, heh.

I've missed so much work because of this, and I'm starting to fall behind, which is not helping anxiety levels, heh. I've tested negative for everything that comes to mind (mono, lyme, toxoplasmosis, etc) so it's not that. Maybe it is just my thyroid? Though, I still have no idea what those weird lymph nodes below my collarbone are up to. I have a new one about a centimeter wide on my right collarbone now. I'm tempted to start naming them ;D

Tomorrow I'm doing the dexamethesone suppression test and Wednesday getting blood work done. I think after that I might try switching when I take my thyroid meds. I currently take them at night, as it was helping me sleep, but that's not working so well any more. Maybe switching back to morning will balance me out? 

-Maggie


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## sjmjuly (Mar 23, 2012)

I take Naturethroid and just started splitting my dose. I take 1 dose in the morning and the other later in the afternoon. So far, so good. I would think taking thyroid meds with T3 in it (Armour and Naturethroid) would not help with sleep. I think it would keep me awake. Just a thought. Try taking it in the morning and see if you sleep better. I started splitting mine because when I took it all at once, it was too much T3 and I would get heart palps. Then by the afternoon (after the T3 wore off) I was dragging butt and needed a nap.


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## BlindMag (May 17, 2013)

I think that's a good idea. I'm going to try doing that to see if it helps.


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## BlindMag (May 17, 2013)

So, both good and bad! 
Good - finally got to the bottom of the lymph node mystery! Of all people, my OB/GYN looked at them and told me that they're fatty deposits consistent with Cushing's disease and asked if I've ever been tested for it. I do have some swollen lymph nodes mixed in there, but she said they placement seems to be related to my thyroid. So yay! II told her I was indeed being tested for Cushing's.
So the Bad. I saw my endo for the second time. I told him I was miserable still, and that the dose increase seemed to not help. He said I don't have Cushing's and that my cortisol is high from stress, which is excellent. I told him that really isn't exactly excellent, in that I'm missing work from fatigue/muscle fatigue/migraines, and that I'd really like to get another test to see if my cortisol is high all of the time, because I know that can affect T4 conversion. He said I'll drive myself crazy coming up with illnesses that I don't have, so no. He said most likely I have Chronic Fatigue Syndrome, which doesn't have any treatments, except for taking it easy. Finally out of desperation to try SOMETHING to make me feel better I asked if I could try a different thyroid medicine. So yeah. I went from 120/90 alternating mcg of Armour to 150 mg of Synthroid, so I'll try that for awhile. I have an appointment and a lab order to do a T4/TSH test at the end of August/beginning of September.

I'm a little confused as to what to do. I know I have high cortisol (31+ for 6 months, lab range 6-21 if that means anything to anyone). I know this can impact thyroid function, but I guess not in this case? I'm still so confused by my last thyroid labs. They say I'm hypo mostly, but I don't have hypo symptoms - my eyebrows are reaching threat level Brooke Shields, and my nails are strong and thick. When I'm even remotely hypo, my eyebrows wander off and my nails are sad peely messes. I have night sweats and insomnia, but I'm gaining weight like my body is gearing up for hibernation. 
(My last set of thyroid labs in May, for reference, heh
TSH - 3.39 (lab range .45-4.5)
Thyroxine T4 - 9.5 (range 4.5 - 12.0) 
T3 Uptake - 19 (range 24-39) 
Free Thyroxine Index - 1.8 (range 1.2-4.9)
Triiodothyroxonine (T3) 214 (range 71-180))

So yeah. I'm debating trying to find a naturopath or someone who would be willing to do other labs on my cortisol and maybe check me for RT3, since I've never had that done before, and figure that I'm not getting anywhere looking at these numbers, so maybe some new numbers might help? No clue. It's hard to find one that takes insurance, though. sigh. Maybe somehow Synthroid will make me feel better? That would be nice!  I'm not holding my breath, but it would be nice! 

-Maggie


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