# Newly Diagnosed - Have Question



## callalillie13 (Sep 5, 2014)

Hello

Any help would be greatly appreciated. Bottom line upfront, I have been lurking and reading for a few weeks. But I went to the Endo today, I don't feel I got any answers.

So I was recently diagnosed with Hashi's, I am having symptoms but the Endo said I don't warrant treatment.
Symptoms these are the main ones:
Fatigue - since 2011, I was tired before that but it got worse in 2011
Cold all time
Forgetful
Brain Fog
Goiter
I had gained weight and was unable to drop it but recently dropped 12 pounds
Achy hands most of the time, pains in shoulders on and off.
I also restless leg syndrome and plmd
GERD
History, I'll try and be brief:
I had been going to the DR and telling them I am tired since 2011, tests show nothing. I did show some minor VIT D def in 2011. And that is when they said it was sleep related (RLS and PLMD).
August 2013 I had ulcers and gastritis, and was also diagnosed with a Goiter. I had ultrasound, which was fine.
July 2014 I had the same issues with my stomach, the DR ran some blood work and my Lipase was elevated. Since I was have some stomach pains they did a CT with contrast. It is my belief that 3 to 4 weeks later that is when I really went in hyper state. For a week I couldn't sleep, slept 4 hours a night and that was broken up. My heart was racing, waking up with it racing and sweaty. I went to my Family DR and he ran some tests. My main reason for going was the fatigue. I was determined to get to the bottom of it. Because as I am sure you know, when you are chronically fatigued and you get sick, you energy goes WAY down. Anyway back to the DR. He just ran TSH. After speaking with his nurse I asked if he would run the blood tests for Hashi's. I did this because someone I know's husband has it and she felt I should ask. After looking at Hashi's I felt she might be right. So that's why that was run. He sent me to Endo.
Today I went Endo and he stated. "You have Hashi's but there would be no treatment. As you are not Hypothyroid." He order some tests to be sure and I will get those next week. And see him next week.
My goiter got A LOT bigger from last year to this year, I am positive it happened after the CT scan. Also my brother was recently diagnosed with Thyroid Cancer, that may be because he was in the Navy on a nuclear sub. But I don't know either.
Tests ordered today: 
*FREE THYROXINE, FREE T4, 33.00* 
On *5-Sep-2014*

Intent 
*T3 TOTAL [8613]* 
On *5-Sep-2014*

*TSH; THYROID STIMULATING HORMONE, 59.00* 
On *5-Sep-2014*

Intent 
*COSYNTROPIN (ACTH) STIMULATION TEST* 
On *5-Sep-2014*

Recent Tests:

*August 2013*

*Test Name*

*Result*

*Flag*​
*Reference*

*TSH*

*1.30 uIU/mL*

*0.35-5.50*

*Test Name*

*Result*

*Flag*​
*Reference*

*T4; FREE*

*1.10 ng/dL*

*0.61-1.12*

*Test Name*

*Result*

*Flag*​
*Reference*

*Triiodothyronine (T3)*

*109 ng/dL*

*71-180*

*August 2014*

Lipase, Serum

67 U/L

H​
0-59

Thyroid Peroxidase (TPO) Ab

399 IU/mL

H​
0-34

Antithyroglobulin Ab

1.5 IU/mL

H​
0.0-0.9

Thyroxine (T4)

9.6 ug/dL

4.5-12.0

TSH 1.76 uIU/mL 0.35-5.50

I just don't feel this is the right course of action. I have made another appointment for a 2nd opinion in 3 weeks. Am I out of line thinking that I should have some treatment? I don't think he's got or going to get a full picture of me.

What are you thoughts????

Thank you

Calla


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## Lovlkn (Dec 20, 2009)

> My goiter got A LOT bigger from last year to this year,


Your TPO is high, your Antithyroglobulin Ab is high, you have symptoms, your FT-4 was high in 2013 .

Something thyroid is definitely happening. You should be requesting a Thyroglobulin to rule out cancer since your thyroid has increased in size and also another sonogram of your thyroid.

Tests you need to start insisting on are FT-4 and FT-3 which will let us know where the unbound thyroid hormone levels are. They will likely always run a TSH along with it. Total 3 gives a good idea but FT-3 is best.

Maybe when your latest labs come back they will be more willing to consider replacement.

If you have nodules on your growing thyroid they need to be identified and are the likely cause of your thyroid issues.


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## Andros (Aug 26, 2009)

TPO Ab
Mild to moderately elevated levels of thyroid antibodies may be found in a variety of thyroid and autoimmune disorders, such as **********thyroid cancer, Type 1 diabetes, rheumatoid arthritis, pernicious anemia, and autoimmune collagen vascular diseases. Significantly increased concentrations most frequently indicate thyroid autoimmune diseases such as Hashimoto thyroiditis and Graves disease.
http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test
(Copy and paste into your browser)

Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/
(Copy and paste into your browser)

TPO and thyroglobulin
http://onlinelibrary.wiley.com/doi/10.1111/j.1699-0463.1994.tb04888.x/abstract
http://www.wikigenes.org/e/gene/e/7173.html
(Copy and paste into your browser)

Understanding Thyroglobulin Ab.
http://www.labtestsonline.org/understanding/analytes/thyroglobulin/test.html
(Copy and paste into your browser)

Thyroglobulin Ab and cancer
http://qjmed.oxfordjournals.org/content/59/2/429.full.pdf
(Copy and paste into your browser)

Another Thyroglobulin and cancer
http://www.mdlinx.com/endocrinology/newsl-article.cfm/3305021/ZZ5052128790304906121963/?news_id=811&newsdt=092010&subspec_id=419

Calla.............welcome! I am going to tell you straight on. Please please get another doctor and at this point, I would suggest an ENT.

You do have cause for concern as indicated by the high antibodies. This is NOT the way to diagnose Hashimoto's and your labs do suggest the possibility of cancer.

So, get to an ENT; let them do what they do. Sometimes they will do FNA and other times they will by pass that and go ahead and get that goiter out. W/ that family history; Wowie!!

We are here for you and please let us know what you end up doing.


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## callalillie13 (Sep 5, 2014)

Thank you for your replies, I will update you when I have my lab results next week.


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## Andros (Aug 26, 2009)

Please; we hope to hear from you soon about all of this!


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## callalillie13 (Sep 5, 2014)

Well good news, well sort of. I spoke with his nurse today, and she felt he ordered all the appropriate blood tests but would speak to him to see if he would order an ultrasound. I didn't ask for anything specific, but I did tell her we didn't speak about my brother so I am not sure if he caught the family history and that my goiter went from not visible to visible looking straight ahead. So I am hopeful he will order it. I don't know why he wouldn't in the first place.

But I do have another question, an hour or so after I posted my original post, the following happened:


While eating dinner I had a hot flash come over me, so I had to get a fan on me. An hour or so later I felt okay but all of a sudden I felt extremely nauseous, no warning, I then sat straight up and felt better as in no immediate sense up throwing up, but still nauseous.
Later on that evening the nausea subsided, and then rest of this weekend a slight bit, but that could be the not sleeping.
My heart rate went up and has been up since
Sweaty and hot flashes all weekend plus waking me up all sweaty
Needed a fan on me or cool temp
Fatigue, but even thought I am tired, I can't relax, maybe because of the HR?
Insomnia, although now that I think about it, I didn't sleep well the night before either, but none of the rest of this until Friday evening 
I lost another 1 lb
Diarrhea

I felt pretty awful this weekend, and still today but maybe not quite as bad today. As of right now it's just the HR, it's at 80+ resting and sleep was a problem last night, so I am tired too. But this is what happened about 3-4 weeks after the CT scan I mentioned above. Does this sound like what happens when swinging to the Hyper state? If so do you think my blood levels will still reflect this tomorrow? I have tried googling this but come up with nothing. Or does it sound like something entirely different? From everything I find on anxiety or a panic attacks, it doesn't sound like that either, those don't last this long, plus I would think I would know what I am panicking about or anxious about? I could see the DR's appt upsetting me, for an hour (I don't think it thought), but not like this since Friday, plus I have a course of action I will take, a second opinion.

If you do think it's the hyper, what do you do? Is there any home treatment that helps you through it? I went to the acupuncturist yesterday, and drink different teas at night. I drink a homemade ginger and turmeric tea, that's supposed to help with inflammation, I started that for the RLS. I also take magnesium before bed, for RLS too and it helps with sleep. But I think the tea that has passion flower in it, is what's helping me get a few hours sleep. I was googling the the different stuff to see what may be lowering my HR, so I could sleep, and I do think that's it. Because I wasn't drinking that every night, and the nights I was drinking the chamomile I wasn't able to fall asleep.

Thanks for any input.

Calla


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## CA-Lynn (Apr 29, 2010)

Skip the homeopathic stuff and the acupuncture. Does nothing for autoimmune diseases except make you THINK you're doing something good.

See and ENT specialist.


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## callalillie13 (Sep 5, 2014)

Ok had appointment today, the thyroid blood tests were never drawn, they were supposed to when I got the stress cortisol test. Can this get any worse? So that blood wars drawn today along with menopause type tests and some tumor tests but not thyroid cancer one mentioned above.

The cortisol levels were normal. I don't have the radiology report, but he said something like that there were numerous tiny nodules? I think he said tiny or little.

Anyway he is still saying that this is not thyroid related. I really wish I had the thyroid tests results and didn't have to wait more. Hopefully next week.


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## callalillie13 (Sep 5, 2014)

Okay so I got the thyroid tests back

TSH 1.40 .47-4.68

T4 Free 1.1 .8-2.2

T3 145 80-190


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## Andros (Aug 26, 2009)

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
(Copy and paste into your browser)

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583
(Copy and paste into your browser)

TBG (thyroxine binding globulin) up, hypo............down, hyper
http://www.nlm.nih.gov/medlineplus/ency/article/003374.htm
(Copy and paste into your browser)

TBII
http://www.ncbi.nlm.nih.gov/pubmed/9364248
http://en.wikipedia.org/wiki/Anti-thyroid_autoantibodies

Substances not found in normal serum (scroll down to autoantibodies)
http://www.thyroidmanager.org/chapter/evaluation-of-thyroid-function-in-health-and-disease/
(Copy and paste into your browser)

It does sound like you are fluctuating. Only the tests will separate the wheat from the chaff.


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## callalillie13 (Sep 5, 2014)

So those tests I should ask for?

Are you saying that it sounds like fluctuation based off the 2013 and last weeks T4 Free?

Thanks


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## callalillie13 (Sep 5, 2014)

Okay so I went to the 2nd opinion last week and that DR was much nicer, talked to me, listened to me, etc. Anyway he said that he felt that the incident 3-4 weeks after the CT scan was possibly thyroid related, unfortunately the blood work that was done wasn't enough to show whether or not that's what happened (as only T4 was done). He also said that this may be another auto-immune disease, but that he didn't know what. He does want an update from me and blood work done in a month. I had also asked about the fact that with Hashi's if you don't catch it at the right time it may not reflect a thyroid problem. That is why he wanted another test in a month.

Anyway this weekend was not great, I didn't great. Heart rate was up most of the weekend didn't sleep great, etc. Yesterday I felt a change in me and my heart rate was 120 resting for a few hours, then went down to 100 until around 4 and then down to 80's. I called my regular DR and asked if they could run thyroid tests to see if we can catch something, he agreed here are the results:

TSH 1.52 .35-5.50

T4 Free .92 .61-1.12

T3 110 71-180

T3 Free 2.9 2.0 - 4.4

Is that much fluctuation between the T3 from a few weeks ago and yesterday "normal"? I will still be getting blood work in a few weeks an then talking to the Endo after that, I am just curious if this is evidence that, yes maybe it is thyroid.


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## callalillie13 (Sep 5, 2014)

Update:

Had blood tests repeated last week, my GP DR ran them, so I am waiting on the Endo to call, I don't know if he even has it yet. But the results are online:

TSH 2.62 .35-5.50

T4 Free 1.83 .61-1.12 HIGH

T3 Free 3.1 2.0 - 4.4

Also thought I let you know SOME of my symptoms, but not all, of them ended up being a medication (gabapentin) that I was dosing down from. I told every DR that I was dosing down on that. Not a single one suggested I look into withdrawal from that. Anyway the very first episode and maybe the second episode, of my symptoms seemed to fit Hyper were in NO WAY related to me lowering the dose, because I hadn't lowered it at time. I am now completely off that med.


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## callalillie13 (Sep 5, 2014)

Well the DR sent me an email and it said the results were "interesting", he did question the ranges of the FT4 as with the lab connected to his clinic, has different ranges. I didn't go there as it's 20 miles away, he just requested the labs through my local DR. Anyway he wants new labs in 6-8 weeks.

I almost question whether or not there was something wrong at the lab that day. My TSH has never been higher than 1.something. None of my thyroid labs have ever been out of limits, except the antibodies.

Any thoughts?


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## Lovlkn (Dec 20, 2009)

The one test I do not see is TSI. If you have TSI in your system this could explain your fluxuating labs.

You need to request that test.


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## callalillie13 (Sep 5, 2014)

Ok I will request that test, if the Endo won't do it, I am sure I can get another DR to do it.

Thank you.


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## Andros (Aug 26, 2009)

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
(Copy and paste into your browser)

Trab
http://www.ncbi.nlm.nih.gov/pubmed/17684583
(Copy and paste into your browser)

TBG (thyroxine binding globulin) up, hypo............down, hyper
http://www.nlm.nih.gov/medlineplus/ency/article/003374.htm
(Copy and paste into your browser)

I do suspect that you are progressing towards hyper. I will list the appropriate tests for finding that out.


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## callalillie13 (Sep 5, 2014)

Andros I asked for the TSI today, waiting to hear back. I suspect he won't do those others you suggested right off the bat though. When I saw him and I asked if he would run blood work just to be sure on everything, he said something to the effect that yes he would, and that FU blood work in a month was a reasonable request, but that there are some crazy tests people ask for and he wouldn't do those, he listed off a few I see on here. I guess I'll see what he says on the TSI and then what the results of those are. At any rate I am sure I can get another DR to run them. Thank you for the suggestions, I'll update after I get the blood tests done.


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## callalillie13 (Sep 5, 2014)

Well the Endo said no, I'll wait till after the next blood draw and see what the results are and what he says after that. But I will ask another DR if he won't run them.


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## Andros (Aug 26, 2009)

You are so welcome and I hope this doc runs the TSI but geez; he does not sound encouraging in that he does not like patient input.

Yikes!


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## callalillie13 (Sep 5, 2014)

I apologize in an advance as I know this will be long...

I have a few more questions, that I am hoping could get answered. I want to get my ducks in a row before my next blood draw! Around the time I need my blood tests I will have a follow up with an Int Rheum and wanted to talk about the above tests, to see if she has any input or thought on the subject. I especially need to do this if the reply I get from the Endo is that my labs are "interesting" again. But even if they are normal again, then I need to know what I am talking about to have a conversation about it.

FYI when I refer to official sites below, I am talking about reputable sites, so that I can say, "According to the Mayo...." Not that a blog written by a non-medical professional does not have value, it's that I know the Endo will not listen to me if it's not from a reputable site. I don't remember exactly what we were talking about, but he said something to the effect that if the info didn't come from a reputable website, he wouldn't look at it. And I believe then he referenced STTM.

I thought I read on this site something like the TSH lags behind the T4 or T3 by like 2 weeks? If so is that FT4 and other thyroid tests or is is a specific test and if so which one??? Also I read that your symptoms have a lag time of 4-6 weeks from the blood work? Is that the TSH or T4 or what one?

So if this is all true or close to true, where is this info written? Is there an official site somewhere? I can't find one, well, I did find the info on the TSH lagging but not any official sites yet. It would help if I knew what that lag is called too?

Also regarding the tests that you guys have recommended that ask for: TSI, TRAB, TBG, and TBII. I guess I also need some help with this. I get what the tests are for the most part, but I am not understanding how they pertain to me? If that makes sense. For example, I get what the TSI is, and I am thinking the reason I would want it, would be because if I have those antibodies, that would mean I have both or it would be suspect that I have both Graves and Hashi's or Hashitoxicosis? Which would then help explain the symptoms and test results?? Or am I missing the point? Also is there any other tests I should have??

And the final question is about Hashi's and the fluctuations that happen, is this written somewhere official? The Endo and I did talk about this, and that's why he agreed to do blood work a month later, to see if we could catch anything. But whenever I read about Hashi's on official sites, I am mainly reading stuff that it is ALL HYPO. Hypo symptoms and hypo blood work, very little mention of the fluctuations. And I am thinking what I have read on the fluctuations is not on any official site, it could have been though. And then I read about Hashitoxicois on this site but there is very little out there as far as info on that. The Mayo only references it for the TSI blood test, and that it would be used would be to help diagnose Hashitoxicosis, but there is no mention as to what it is, what the symptoms are, what the treatment is, etc. And what's the difference between Hashi's and Hashitoxicosis? I am thinking that TSI and it's opposing antibodies on the thyroid make it difficult or nearly impossible to control? But symptom wise they could feel the same?

I guess what really confuses me in all of this is that, if the fluctuations are normal, the TSH lagging behind, and the symptoms lagging behind the TSH... Why would the Endo say my latest tests were "interesting"? If that would be common with Hashi's what's his confusion? I talked to a family friend, and her husband has hashi's, when I told her of my blood test results she said, "That's Hashi's!" Any ideas or theories as to why the info on fluctuations and hashitoxicosis is not plentiful on the internet?

Anyway thanks for any help, again I just want my ducks in a row before I have my follow up with the Int. Rheum, in case I need to ask her for the blood work. As I won't have much time to prep for the apt after the blood work is done. My fear is that the blood tests come back normal, and the Endo says I don't need anything else from him. And won't do any further testing, other than follow up blood work done in 6-12 months. Which would be ok if I were positive that the last blood tests were a lab error, but since not, I'd like the rest of the blood work to ensure there isn't something else going on.

I confess, I am confused! Please help, and thank you for your time.


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## Chrys (Nov 18, 2014)

Calla, I have Hashitoxicosis. I began with Graves in 1999 then went hypo/Hashi and a little over a year ago began to have real life changing complications; severe fatigue, restless leg, brain fog, body & joint aches, I could go on & on. That's when I went to an Endo and was diagnosed with Hashitoxicosis. It's like having Hashmoto's with a little Grave's thrown in every once in a while. When I'm hypo, I am exhausted to the point I can't stay awake and will have constipation and all the other wonderful symptoms. When my thyroid starts to dump hormones, I get all of Graves symptoms; exhausted but unable to sleep, palpitations, elevated heart rate, diarrhea, hot, etc. As I understand it, there isn't much that can be done. It will supposedly run it's course, but I have had the bouts with Graves for years, they have just become more frequent.


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## Andros (Aug 26, 2009)

You cannot have the antibodies you have and it NOT be thyroid related. They are indigenous to the thyroid.

Hugs,


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## jenny v (May 6, 2012)

> I began with Graves in 1999 then went hypo/Hashi and a little over a year ago began to have real life changing complications; severe fatigue, restless leg, brain fog, body & joint aches, I could go on & on. That's when I went to an Endo and was diagnosed with Hashitoxicosis. It's like having Hashmoto's with a little Grave's thrown in every once in a while. When I'm hypo, I am exhausted to the point I can't stay awake and will have constipation and all the other wonderful symptoms. When my thyroid starts to dump hormones, I get all of Graves symptoms; exhausted but unable to sleep, palpitations, elevated heart rate, diarrhea, hot, etc. As I understand it, there isn't much that can be done.


This was pretty much my situation to a T. The thing that finally ended the vicious cycle for me was surgical removal of my thyroid. It's been a struggle to get my meds right (but I have adrenal issues, too), but it's so wonderful to be off of that rollercoaster and give my body a break from the constant swings.


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## callalillie13 (Sep 5, 2014)

Ok quick question, I have the flu (fever, chills, aches, headache, etc) and am scheduled to get that FU blood work tomorrow, will the flu effect the results? Should I reschedule?


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## jenny v (May 6, 2012)

I don't know that having the flu would affect any thyroid labs, but I would probably postpone the labs until you're feeling better, just to be safe. 1) You don't want to expose the lab staff to the flu, 2) you want your body "normal" as it is on most days and not while it's being ravaged by the flu so it doesn't skew any results, and 3) most labs in my area will not do bloodwork on people with active cases of the flu.


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## callalillie13 (Sep 5, 2014)

Thanks, I'll call them in the morning.


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## callalillie13 (Sep 5, 2014)

Thought I'd update you all.

Most recent results:

TSH 2.26 .35-5.00

T4 Free 1.04 .71-1.85

T3 Free 2.4 2.3 - 4.2

The Endo says, normal results see him in a year for follow up blood tests.

I also saw the Integrative Rheum this week, she said she feels my problem is out of her area. She does not understand hormones and couldn't even comment on my thyroid labs. Well she did talk about the anti-bodies and how western medicine it taught that there isn't a problem until it's broken. Or until your full blown hypo-thyroid. Anyway she did refer me to another integrative DR that she feels will better help me. I don't know what her thoughts were. She did talk about deficiencies, toxicities, etc. But those are out of her expertise. FYI when I saw her 6 weeks ago she put me on a diet (no gluten, no sugar, just protein, fruits, vege's, limited starches and grains, etc) and a crapload of supplements. None of that helped at all. I felt no different, went back to gluten and sugar and I feel no worse.

Also I don't know if this plays a factor in any of this? I had been on depo-pravera since about Aug 2010, the first Endo suggested that my fatigue was related to that. Fatigue started May-ish 2011. So I did not get my shot when I was due on Dec 1. The best guess I have is that it will take about 4-6 month to clear that out of my system. So if that's what causing the fatigue, it will be some time for me to figure that out. It could also be cause the night sweats. They say they can't tell if it's menopause (I'm 45) until about March, 3 months off the Depo. At this point I think it's safe to say it's not the withdrawal from the other drug, Gabapentin. I guess it's possible it's the Depo causing both the Fatigue and the hot flashes. I have read stories from other people saying, they had it for years and then bam, a side effect happened. I don't know I am rambling.

Any ideas? Go with the Int DR or should I find a naturopathic DR? The Int DR should be covered by insurance, so maybe I should go see her first? But it will probably be a long wait to get in to see her.

Right now my thoughts were to just continue trying to detox this med out of my system or meds if it's possible the Gabapentin is still effecting me. Drinking raspberry leaf tea, to help regulate my cycle.

And maybe I should have taken more Vit D? Back in 2011 the DR said I was slightly low (34 no ranges given) and I should take 1000 ius of it for a few months, I have taken it since then. I did feel slightly better fatigue-wise about 3 months after taking it. But wondering if maybe I should see if I can get a DR to run these again in the meantime? Any others I should ask for that would cause the fatigue? B12, ferritin and flolate have all been run. Ferritin has been low, but last time it was run it was like 120's so I did have it up there last May. I didn't feel any better with it that high.

What are your thoughts? I guess I am not ready to accept the CFS diagnosis, and there has to be SOMETHING I can do that will get me my life back? I appreciate any thoughts/comments. Help me.

Sorry if this is a rambling mess, I think my brain is still foggy from the flu. The brain fog that I have had over the years, is somewhat clearing in general, so that my have been that evil GAB doing it to my brain. But it's not 100% clear yet either.


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## callalillie13 (Sep 5, 2014)

Another follow up

The integrative DR ordered a spectra cell test so next week I will have that test done, don't know why i didn't post that above. That may help if some deficiency exists. I don't fully understand it, but it looks like it will test for many vit and min deficiencies at the cell level, your blood could be fine but if your cells aren't getting it you could be deficient.

The acupuncturist feels it's hormonal of some sort. Which actually makes sense, maybe it was the Depo, caused an imbalanced, my body is just trying to get the hormones in balance.


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