# HELP! So confused and unwell.



## jani_3 (Nov 21, 2012)

Hello,

I have recently been having A LOT of symptoms that have actually interferred with my life quite drastically. I had been experiencing some strange symptoms for months before I was finally hit and here I am today.

About 8 weeks ago I started experiencing a drastic change in my body. It literally felt like one day I was fine (Other than extremely exhausted) and the next I was a wreck! My resting heart rate has been 105bpm the whole time, my feet and hands would always be sweaty, even if cold. I felt weakness in my arms and legs, I have battled with nausea at some times and feeling always hungry at other times. My doctor originally told me this was "just anxiety" and put me on ativan, which of course did not help. After he tested my TSH, which was .54 (lower but still within normal range). During this time I went to Mexico for a holiday but wasted it as I felt sick the whole time. I could only stay in my hotel room as the humidity just made me feel worse. I would also get this awful shakey feeling through out my body - it felt like my whole insides were shaking!! Coffee made this feeling worse so I have avoided coffee and all stimulants.

When I came back, he did a spot urine analysis expecting to find too much adrenaline in my urine. Results came back that I had not enough and he told me this meant I had "adrenal insufficiency" and referred me to an endo.

While waiting to see the endo, I noticed a lump in my throat. I couldn't swallow to well and went to see the doctor again. He said my thyroid was enlarged and I did another TSH and T3 and T4 test. My TSH this time was .2 (under "normal" range) and T3 was 5.8 (4-7.8 normal) and T4 20 (11-22 normal). He said that was subclinical hyperthyroid and the endo would sort this out.

I saw the endo a few weeks ago. She put me on propranolol for the racing heart, tremors, sweating and chest pains. She also ordered more tests to test for antibodies and my adrenals.

Propranolol seemed to be helping at first, giving me relief of the chest pains and racing heart....I was still left with pain in my eyes at times and a gritty feeling in them, headaches, shortness of breath, and the lump and swallowing difficulties.

My TSH this time was .06 and my T4 19 and T3 5. I am a bit confused as to how my TSH can continue to drop but my T3 and T4 stay within normal range...however, I am extremely symptomatic - even before my TSH started to drop!! My cortisol levels seem to be good in the mornings so she doesn't seem concerned about my adrenals, however, my endo does not explain much of anything to me and whenever I ask her questions she usually says "I don't know, that's strange" such as..."its strange how many symptoms you have"....I hate that because it's not like I made these symptoms up. I have been so unwell since this all started that most days I was bed ridden and have not been able to go to work until yesterday - which I am forcing myself to do because part of me wants to get on with life as doctors arent helping me much, and the other part needs the money. I have been off 8 weeks with no pay.

My question is...my doctor told me that with the enlarged thyroid and all my symptoms and low TSH, he felt I had Graves disease, which from what I read, is the most common cause of hyperthyroidism. However, when my antibodies test came back, my TPO antibody was 12 (normal <35) and my TSI was .9 (normal <1.8). So does this mean I tested negative for both antibodies?? Don't you need to test positive to be diagnosed with Graves?? I am very confused as to what would be causing all my symptoms and my TSH to be dropping.

Thyroid disease runs rampid in my family - my mum, great aunt, grandma, and both maternal aunts have hypothyroid issues.

I have been having an extremely difficult time lately as I feel the propranolol isn't working that well. I am only on 10mg twice daily but yesterday had to take it a third time cos my heart was racing!! I also have difficulty sleeping - one time I didn't sleep for 2 days, even though I was tired, I couldnt sleep...I find it difficult to fall asleep at night and am often woken up easily, usually my heart is racing and I feel that shaky feeling in my body again.

At first I thought these symptoms were related to low blood sugars but turns out my blood sugars are pretty good and stable.

My doctor won't push for anything more and is playing a "wait and see" game...however, somedays I get so depressed for feeling like this and cant sit around waiting any longer. My endo isnt that helpful and I dont see her again until Dec. 19. I have a thyroid ultrasound before then which should hopefully show something.

If anyone has any suggestions or comments about their own experiences, if I could be missing something or just to help explain why I am hyper with no antibodies, that would be soooooo appreciated!!!

Thank you!!

J


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## Lovlkn (Dec 20, 2009)

Jani,

Welcome to the board - I'm not sure what is happening with you other than you may be in the beginning stages of thyroid disease. During my diagnosis stage I had 1 completely normal lab of several tests which confused me as well.

If the antibodies are active they may be going up and down and so far you have not been above to lab when they are out of range.

Have they ordered an ultrasound of your thyroid? You could have nodules causing a thyroid hormone dump - since you do not have antibodies I suspect this is what is happening.

I also want to point out that the Free T-4 and Free T-3 labs are more accurate to diagnose what thyroid hormones are in your system. Your levels of the labs you did share are high range and likely the cause of your symptoms.

You will need to be proactive in your care and question your doctor, suggest tests to run and keep on them to do something for you. Also, get in the habit of collecting paper copies of all lab work run on you.


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## jani_3 (Nov 21, 2012)

Hi Lov,

Thanks for your reply! I guess this wouldn't bother me so much if I wasn't so symptomatic. I just want to feel better again and also understand what is going on inside my body!

Do you know if people who don't have autoimmune thyroid diseases would have any level of antibodies in their system? I am trying to figure out if having ANY antibodies could indicate an autoimmune disorder but that they are just low right now?

The Endo has ordered a thyroid ultrasound to see what is going on with it as its been enlarged for 6 weeks now. I guess I just don't understand how it's possible to be highly symptomatic before my labs start showing anything is wrong - did you ever experience that? Also are you hyper or hypo?


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## CA-Lynn (Apr 29, 2010)

Typically ANY level of antibodies would indicate autoimmune disorder........but medical science has shown that very low levels of antibodies may not necessarily mean it's an autoimmune disorder, but some mile exposure to external environments that trigger the antibodies.

In short, I think we're still in the dark ages as far as diagnostics.

Also, it wouldn't be all that unusual to be highly symptomatic......with low antibodies. It takes a while for the body to be struck with repeated exposure and FORM the antibodies.


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## Andros (Aug 26, 2009)

jani_3 said:


> Hello,
> 
> I have recently been having A LOT of symptoms that have actually interferred with my life quite drastically. I had been experiencing some strange symptoms for months before I was finally hit and here I am today.
> 
> ...


So glad you are here.









It does sound like Graves'. I do feel your doctor could better serve you if he/she ran the FREE T4 and FREE T3 lab test.

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.
Dr. Mercola (FREES)
http://www.mercola.com/Article/hypothyroid/diagnosis_comp.htm

And also these antibody tests!

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

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

TPO (antimicrosomal antibodies) 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/

Plus RAIU (radioactive uptake scan.) It is important to rule out cancer. Cancer and hyper seem to go hand in hand.

Let us know what transpires.

You will get more comments after the holiday.


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## jani_3 (Nov 21, 2012)

Thank you for that Lynn!

I have been really confused over my results and been unsure if it meant that I could have antibodies causing my TSH to go low and enlarging my thyroid or if EVERYONE had SOME level of antibodies but I didnt have enough to do this.

I dont know what my endo will say yet, Im a bit worried. I am a person who goes by how my body feels (which is usually pretty good). I try to take care of myself by eating healthy, exercising and getting enough sleep so when my body is under stress (which is clearly has been for the last 2 months) I listen. Unfortunately, doctors don't always listen to symptoms if labs aren't showing them what they think they should. Not everyone is the same. My doctor said it is possible for someone to become symptomatic well before labs show anything, especially for people who are "in tune" with their bodies, which I think I am. I love being in tune with my body but its torture feeling this way when the doctors wont do anything for me other than give me a beta blocker to help my heart.

I have heard that antibodies can go up and down, is this true? If so, I am curious what my antibody levels would have been when I first was symptomatic, because I felt like I was being hit by something hard! But my TSH was still.54 (normal).

Now I am still symptomatic but less. Do Endo's usually run antibody tests again to see if levels have changed or is it a once off thing? My endo has me checking my tsh and free t3 and ft4 levels every 4 weeks for the next 6 months.

I am hoping that things improve before then though because I'm getting married next year and the thought of feeling like this one my wedding day scares me!!

Im so frustrated with my doctor and endo that I feel at a loss. I have met with a naturopath a while back (when I first was symptomatic) and he seemed really good, knew his stuff and told me about antibodies long before the endo or doctor did. I am considering going back to see him with my new tests to see what he says and can offer me.

Has anyone seen a naturopath for thyroid conditions? I am skeptical but feel desperate.


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## jani_3 (Nov 21, 2012)

Thank you Andros, Sorry I didn't see your comment until after I replied to Lynn.

So does this mean that even if there is less than considered normal leves of TSI in blood, that that could be causing my symptoms?

My endo ran TPO which I had 12 (low) so not sure what that means either. Thank you for sending me the links, I will be sure to read up on this stuff so I am well informed for my next endo appt!

I have a thyroid ultrasound coming up in 2 1/2 weeks, would this show cancer? If not, what tests need to be run in order to rule out cancer?

Free T4 was run which was 20 (normal is 11-22) but not Free T3. Will ask for that next time!

Thank you for your time replying!! I feel I get more info and knowledge from people who have experienced this than the doctors right now.


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## Lovlkn (Dec 20, 2009)

My thyroid was enlarged from the time I was 12. I was diagnosed 7 years after the birth of my 1st child with autoimmune graves disease at age 36.

Something is definitely up with you. As I said earlier - you need to be proactive in your care.


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## jani_3 (Nov 21, 2012)

Lovl,

Did the doctors not suspect anything was wrong with an enlarged thyroid? Did they do any tests or did it just go unnoticed?

Thank you, I am trying to be proactive which is why I came onto here to get more informed. I have a feeling I will get worse over time, which might be better for the doctors to diagnose me, but I don't want to wait that long before I get proper treatment. Thanks again for your input!

Oh last thing....did you ever feel unwell before you were diagnosed? and now that you have been diagnosed has treatment been successful for you?


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## Lovlkn (Dec 20, 2009)

I did not have any symptoms I noticed until after the birth of my 1st son.

I then became a hypochondriac as my husband called it. I had so many symptoms - I just did not realize they were hyper thyroid until about 5 years into it.

I think my natural type A personality was increased to type AAA due to my enlarged thyroid and undiagnosed thyroid disease.

Thankfully I have an understanding husband.


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## jani_3 (Nov 21, 2012)

Yes, well I can understand that cos I normally have a laid back attitude and since developing these symptoms I have been super stressed and anxious - my doctor even originally diagnosed me with anxiety and gave me ativan and told me to take a holiday. I did, took the drugs but symptoms didnt go away. I then went back to him and said its not anxiety, so that led to do more tests then the lump came up and TSH started dropping.

Ive never felt anxious in my life and I hate it. I currently hate the difficulty with breathing/shortness of breath and the difficulty falling asleep at night, yet feeling fatigued!

I have felt like a hypochondria at times...and at other times like I was completely losing my head!! Actually, I wrote all my symptoms down cos I felt they were so many and I didnt wanna forget any for my appt with the endo...and she looked at the list and said "You have so many symptoms...its strange" but I've listened to other people talking about their symptoms and I have no more than them.

It's good to have an understanding partner...my fiance is very understanding too. Forums like this have helped me feel less like a hypochondria as well!!


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## Andros (Aug 26, 2009)

jani_3 said:


> Thank you for that Lynn!
> 
> I have been really confused over my results and been unsure if it meant that I could have antibodies causing my TSH to go low and enlarging my thyroid or if EVERYONE had SOME level of antibodies but I didnt have enough to do this.
> 
> ...


Many on this board are highly pleased with their NP doctor. Do try one. Get recommendations if you can.

Antibodies indeed do wax and wane. Big time.


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## webster2 (May 19, 2011)

jani_3 said:


> Has anyone seen a naturopath for thyroid conditions? I am skeptical but feel desperate.


I do, and have had very good results. She does highly suggest that I have a GP and an endo as well but she is always my first choice.


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## jani_3 (Nov 21, 2012)

Thank you Webster and Andros!

I have a GP and an endo too, but while I was first experiencing symptoms and my GP told me it was "just anxiety" and nothing physically wrong - mind you he never ran any tests to confirm that! I decided to see a naturopath, who upon my first consultation which was almost 2 hours long (no GP or Endo would spend that long with me!!) he said he suspected I had an autoimmune thyroid disease. It would be weeks after that until my thyroid became enlarged and I got a proper thyroid panel done through my GP to confirm it was going hyper. The only reason I waited so long is because it is free through medical system but the naturopath I have to pay out of pocket for tests, which is unfortunate!

Anyways, since seeing the endo, who seems to want to play a "wait and see" game, I have contemplated going back to the naturopath to see what he thinks. He seems really knowledgeable, I just wanted to know if anyone else had seen a naturopath to treat a thyroid disorder.

If you don't mind me asking Webster, what did your naturopath treat your graves with?


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## CA-Lynn (Apr 29, 2010)

I want to be clear on something: most people with low antibody test numbers will indeed have thyroid disease. Some people are false positives. And some people have external exposure [like a woman who has an Rh- baby and the first one is fine, but they have to treat her with Rhodan for the second pregnancy by an Rh- dad].

Here's a link that explains low numbers to some extent:

http://labmed.ucsf.edu/sfghlab/data/tests/365.html

The key point is:

The determination of TPO antibody is the most sensitive test for detecting autoimmune thyroid disease (inlcuding Hashimoto's thyroiditis and Graves' Disease). The results of this test should be used in conjunction with clinical findings and other laboratory data (i.e., TSH and thyroid hormone levels) to make a diagnosis of autoimmune thyroid disease. Although anti-thyroperoxidase antibodies are a sensitive and specific indicator of autoimmune thyroid disease, a subset of normal individuals (up to 5%) may have low level antibodies that may not have clinical significance, yielding a false positive test result. *Moderately increased levels of TPO antibodies may be found in patients with non-thyroid disease, such as type I diabetes, pernicious anemia, rheumatoid arthritis, lupus erythematosus, and other autoimmune disorders.*The antibody reactivity previously ascribed to the thyroid microsomes is now recognized to be primarily directed against thyroperoxidase, and is the antibody activity most commonly found in thyroid disease.


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## Andros (Aug 26, 2009)

jani_3 said:


> Thank you Andros, Sorry I didn't see your comment until after I replied to Lynn.
> 
> So does this mean that even if there is less than considered normal leves of TSI in blood, that that could be causing my symptoms?
> 
> ...


You have interpreted the TSI correctly! Ultra-sound may or may not show everything. RAIU (radioactive uptake scan) would be the better choice. In my humble opinion.

Also, radioactive uptake scan (RAIU); sonograms have limitations.

Ultra-sound limitations http://www.radiologyinfo.org/en/info.cfm?pg=us-thyroid

It would be good to get Thyroglobulin and Thyroglobulin Ab lab tests also.

Thyroglobulin Ab
A negative test is normal. A negative test means no antibodies to thyroglobulin are found in your blood.
http://www.nlm.nih.gov/medlineplus/e...cle/003557.htm
(The normal thyroid has Thyroglobulin in low titers but should not have Thyroglobulin Ab)

And this will help you advocate for yourself. Knowledge "is" power!

Substances not found in normal serum
http://www.thyroidmanager.org/Chapter6/Ch-6-6.htm

You will enjoy Thryoid Manager. It is a very credible site.


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## jani_3 (Nov 21, 2012)

I want to thank you both for you responses and passing along links to research this stuff - I agree with you Andros, knowledge is power!

Even though I am low for both TPO AB and TSI in my blood, I know that I do/will have a thyroid problem in the future. It runs rampid in my family - my mum, grandma, great aunt, and both maternal aunts have hypothyroid issues and some had hashi's. So it's no surprise to me that my thyroid is enlarged and my TSI levels are low, however, it's frustrating that I don't have more definitive antibody results because I know the Endo and doctors LOVE clinical findings.

I have had symptoms of hyper periodically over the past 4 months..maybe even longer but they were more gradual that i didn't think anything was wrong. But since 8 weeks ago I have had consistent hyper symptoms which made me open my eyes that something was not right in my body.

I would be interestedd to know what my antibody levels would have been 8 weeks ago when I was first hit with the symptoms. They were so severe that I was bedridden and housebound...not bed ridden cos I was tired and sick but just that I felt like there was a war going on in my body and I was unsure of what was causing it. I also couldn't concentrate on anything, very frequent and loose bowel movements several times a day, sweating, rapid heart rate, weakness in arms and legs and this internal shakiness that I couldn't get rid of.

My symptoms have decreased a bit over the past few weeks (since having the antibody tests) and my thyroid has decreased in size - it was so inflammed before that I couldnt swallow properly and was confined to eating liquid and soft foods. This didn't help with the weight loss. In the past 8 weeks I have lost 17 pounds..and I wasn't that big to begin with so I've been told by work colleagues I look "fragile" now...

With all my symptoms and TSH being suppressed and freeT4 (almost too high!) and enlarged thyroid and history of thyroid problems...I am convinced my thyroid is causing these symptoms.

In the past 3 weeks I have also stuck to a gluten-free diet as I heard this could be a trigger for autoimmune thyroid (if that is the case). I am also taking B12 and Vit. D.....I heard selenium can help too, has anyone heard anything about this?

I think I will ask for the Thyroglobulin Ab test as well, although I may have to pay for it as I doubt my GP or Endo will order it.


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## Andros (Aug 26, 2009)

jani_3 said:


> I want to thank you both for you responses and passing along links to research this stuff - I agree with you Andros, knowledge is power!
> 
> Even though I am low for both TPO AB and TSI in my blood, I know that I do/will have a thyroid problem in the future. It runs rampid in my family - my mum, grandma, great aunt, and both maternal aunts have hypothyroid issues and some had hashi's. So it's no surprise to me that my thyroid is enlarged and my TSI levels are low, however, it's frustrating that I don't have more definitive antibody results because I know the Endo and doctors LOVE clinical findings.
> 
> ...


You are hyperthyroid so as a safety precaution, I would like you to read this...........

Thyroid Storm Symptoms
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001437

Gluten can trigger a lot of autoimmune situations; especially an inflammatory response in indeed the person is intolerant of gluten (wheat gluten.)

I have been gluten (wheat)-free for more than 20 years. All grains have gluten. I can enjoy oats, corn meal, barley and rice w/o ill effects.

Why would your doctors not order these tests? Is this a keep down the insurance costs thing? That is unconscionable; especially if it is necessary to rule out cancer. Good grief!


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## jani_3 (Nov 21, 2012)

Thank you for the thyroid storm info! I felt like I was in thyroid storm at the start of all this...but then some of my symptoms seem to have subsided with propranolol, even though my TSH keeps dropping. I will be alert to any changes though!

Did you take a gluten tolerance test or did you just decide to cut it out of your diet like I have? I am curious to see if I have an actual gluten allergy because in my teen years I had such bad IBS symptoms that sometimes I couldn't go out to eat..I would get such bad pains with eating and I ate a lot of carb/gluten products!! My doc just diagnosed it as IBS but once I reached 20 these symptoms subsided. I know my naturopath wanted to test for gluten intolerance so I might do that, hopefully its not too expensive!

Did you find going gluten-free has made a difference in managing thyroid symptoms?

Well I don't know for sure if they won't run the tests, I should give them more credit than that. I have just had such a hard time with trying to convince my GP that something was wrong and it wasn't "just anxiety" as he said...even though Ive never had anxiety before. I don't really like my endo but I am hoping that she is smart...she doesn't have to be nice just smart and curious about what is causing all this! I love a curious doctor.

I don't know why my doctor is so hesitant to run tests to be honest..it doesn't cost me anything to have tests run through my GP or Endo as its all covered. It just seems like they don't want to do anything that they feel unnecessary, but I shouldn't speak to what they will think is necessary or not.

Is the thyroglobulin Ab test the screening test for cancer?


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## piggley (Sep 15, 2012)

jani_3 said:


> I want to thank you both for you responses and passing along links to research this stuff - I agree with you Andros, knowledge is power!
> 
> Even though I am low for both TPO AB and TSI in my blood, I know that I do/will have a thyroid problem in the future. It runs rampid in my family - my mum, grandma, great aunt, and both maternal aunts have hypothyroid issues and some had hashi's. So it's no surprise to me that my thyroid is enlarged and my TSI levels are low, however, it's frustrating that I don't have more definitive antibody results because I know the Endo and doctors LOVE clinical findings.
> 
> ...


Hello Jani,
Yes Selenium is very important, for the conversion of t4 to t3 apparently.

http://thyroid.about.com/library/news/blselenium2.htm

I hope you get some help soon! 
Blessings.


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## jani_3 (Nov 21, 2012)

Thank you piggley, I might start taking some selenium while I wait to see the endo again.


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## Prairie Rose (Nov 17, 2011)

I think that you definitely should have a radioactive uptake scan.

Hugs, and I hope you are feeling better.


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## nikkij0814 (Jul 13, 2011)

Hi Jani -- Looks like you're hyperthyroid -- I have been hyperthyroid in the past, but due to overmedication. Being hyperthyroid will definitely cause the symptoms you describe - racing heart, feeling awful, insomnia, anxiety, depression, etc.

If I were you, I'd look for a more proactive doctor that's willing to act. Sometimes they don't understand just how disruptive the symptoms can be to your life. The doctors will likely tell you that you have anxiety, but even if you do, the thyroid problems will exacerbate these problems and diminish your quality of life.

Good luck!!!


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## jani_3 (Nov 21, 2012)

Prairie Rose - Thanks for your suggestion. I hope that my endo will suggest this as I don't think the antibodies test was very definitive.

Nikki. - At first I had no idea what was wrong with me - at first I would get these bouts of heart racing, shakiness, brain fog/difficulty concentrating and extreme fatigue. I just put these down to being due to low blood sugar, even though eating didn't seem to relieve me of these symptoms, they would eventually go away on their own for a while. Until finally I was hit and haven't been better for over 2 months now. The thyroid is definitely tricky business.

The more I read about hyperthyroid, the more I definitely think all my symptoms make sense. I've never had anxiety in my life and am actually a child & family counsellor who was running an anxiety group (how ironic!) and knew all the psychological tricks to help cope with anxiety, but none of them worked with me. I felt like I was losing my mind until my TSH started dropping and I realised that it most likely wasn't "all in my head". Plus anxiety meds did nothing to give me relief of symptoms so that's another clue its not psychological..although sometimes I feel like i am definitely struggling with the physical symptoms of anxiety, I think that's due to my thyroid pumping out too much hormone.

I would LOVE to see an endo or doctor who had first hand experience with hyperthyroid...my endo only knows thyroid disorders from what she's read in a book, and you can tell as she couldn't answer any of my questions and thought I had "too many symptoms". These symptoms have definitely disrupted my life. I only went back to work for half time last week...and was off for 2 months as I can't work as a counsellor when I'm like this!! But the doctors don't understand that. They give me propranolol and say it will take care of all my symptoms, but it doesn't...some of them but not all of them.

I have an ultrasound in 2 weeks, will that show anything? I sense that the RAIU will be better in terms of diagnosing.


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## nikkij0814 (Jul 13, 2011)

So sorry you're dealing with this Jani - it can be really hard to work and carry on with your normal activities when you're feeling like this. I barely clung to my job, and luckily I'm a teacher so then I had the summer off to get things together.

It takes SO LONG to get things back to normal, you'll likely need to go back to work before you feel well. The "normal" treatments for anxiety didn't help me either. Therapy and meds barely made a dent. This doesn't help you too much except for you to know that you're not alone, and you will get through this! I am feeling much better and can resume all of my normal work activities and hobbies. Sometimes I don't feel well, but a majority of the time I'm okay.

It's been a year and a half for me. I was hoping to have things completely straightened out before I make it to two years, but I'm just not sure. I would like to get off the antidepressants, but only time will tell if that's going to be a realistic option. Best of luck, be sure to work with a good doctor. If that isn't your doctor, SWITCH. :hugs:


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## jani_3 (Nov 21, 2012)

Nikki it does help to know im not alone in how im feeling! 
my work has been incredibly supportive which is good but im having to go back full time now nd still not good! im really struggling with fatigue right now. in the afternoon from 1-7 i will feel pretty drained and like i could fall asleep at the drop of a hat. I've rapped several times when had the chance and this isn't like me. did u ever struggle with this? i wonder if the propranolol has something to do with my extreme tiredness or if its related to the thyroid?

were you diagnosed with graves? what treatment did you go with? i hope i am better in a year as i am getting married next September!


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## jani_3 (Nov 21, 2012)

sorry i was meant to say i have napped not rapped haha


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## nikkij0814 (Jul 13, 2011)

jani_3 said:


> Nikki it does help to know im not alone in how im feeling!
> my work has been incredibly supportive which is good but im having to go back full time now nd still not good! im really struggling with fatigue right now. in the afternoon from 1-7 i will feel pretty drained and like i could fall asleep at the drop of a hat. I've rapped several times when had the chance and this isn't like me. did u ever struggle with this? i wonder if the propranolol has something to do with my extreme tiredness or if its related to the thyroid?
> 
> were you diagnosed with graves? what treatment did you go with? i hope i am better in a year as i am getting married next September!


Hi Jani -- I would also get waves of fatigue in the afternoons. I'm not sure why it was in the afternoon - one doctor speculated that I had the most thyroid hormone in my body in the afternoon because I was taking the pills first thing in the morning. I also HAD to take naps - it was really a pain. Often I'd need to sleep for 3-4 hours, which was only possible in the summer.

I also got married in the middle of this mess! About 9 months into it I was feeling somewhat better and got married. I do not have Graves - I had a tumor, which turned out to be cancerous, so my entire thyroid was removed in 2005. Then I worked with some idiot doctors who overmedicated me for years. It all came crashing down and took a long time to figure out. It's awful, awful, awful.

I still get the "tired" feeling, as though I could just fall asleep at the drop of a hat, but it's better. I had been taking time-release Xanax to sleep, but am currently weaning off of that, so I'm dealing with some side effects to coming off of that, which includes feeling "foggy" and tired... so it's hard not to feel like I'm back where I started, but I know it's all going in the right direction.

Keep asking questions -- it will get better!!!


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## jani_3 (Nov 21, 2012)

Hi Nikki,

I really wish I could naps, I was for a while but now I am back to work after 8 weeks off and I can't take naps. I don't know why but lately I have had the worst time sleeping, despite being tired!! I have battled with this for the last 2 1/2 months since my symptoms started. One time I didn't sleep for 2 days straight despite taking sleeping pills. I get so frustrated because I find my symptoms such as heart palps, shakiness, shortness of breath are all worse if I don't sleep the night before and I usually have to take an extra propranolol (which doesn't seem to make too much difference)!

I can't imagine what you went through with the cancer - did you have symptoms of hyper (or any symptoms) prior to finding the tumor? If so, what were they?

I don't understand how I can be so tired between 1-7pm and fall asleep so easily but come 9...10..11..even 2am I couldn't fall asleep if my life depended on it! Its very frustrating...I feel like I am in a very hyper stage right now.

You have been dealing with this issue for a long time - I have only been dealing with it for 3 months and it already feels like too long! I hope that you are starting to feel better soon!!


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## nikkij0814 (Jul 13, 2011)

jani_3 said:


> Hi Nikki,
> 
> I really wish I could naps, I was for a while but now I am back to work after 8 weeks off and I can't take naps. I don't know why but lately I have had the worst time sleeping, despite being tired!! I have battled with this for the last 2 1/2 months since my symptoms started. One time I didn't sleep for 2 days straight despite taking sleeping pills. I get so frustrated because I find my symptoms such as heart palps, shakiness, shortness of breath are all worse if I don't sleep the night before and I usually have to take an extra propranolol (which doesn't seem to make too much difference)!
> 
> ...


I actually didn't feel any symptoms when I still had the tumor, and it took me being overmedicated for a long time to get to where I felt symptoms of being hyperthyroid. I'm not sure why, something just changed in my body where I couldn't withstand the extra thyroid hormones anymore and then everything exploded.

I have heard that if you are hyperthyroid, your body is on overdrive, which is exhausting. You'd think it'd be the opposite and you'd have lots of energy, but you don't. This would explain why you're tired but can't sleep! Sleeping pills didn't do anything for me either... I wound up taking Xanax XR to sleep and stay asleep, which I just got off of - woohoo!

Three months isn't long in thyroid-time, unfortunately. Every change takes about 3 months for the body to adjust to.

Hopefully you'll get to a doctor who can help you soon!!! :hugs:


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## jani_3 (Nov 21, 2012)

Yes, I know 3 months isn't long - which scares me cos it feels like it's been FOREVER since I felt healthy and well. It just feels like the doctors move at a glacial pace. My endo wants to monitor my thyroid for the next 6 months, getting labs done every 4 weeks. I hate needles, I wish she would just fix me already so I can get on with my life!

Sorry, I have had a really bad bout of insomnia and not been able to sleep for the past 4 days...I finally fall asleep around 3-4am but have to wake up at 6:30am for work and then Im expected to function all day until I go home and reenact the whole miserable experience! Sounds like the Xanax helped with the sleeping...sounds appealing to me. However, Im scared of Xanax cos I have heard its highly addictive and hard to get off of - congrats for that by the way!! Woohoo indeed!!

Its funny you mention that you were on thyroid meds and then you changed and couldnt stand them and went hyper. My mum has been hypo for 20 years and recently she has started having difficulty with her meds, they ran her TSH and T4 and she was starting to go hyper. So they are monitoring that ...she is struggling with a similar insomnia issue at the moment, although not as severe as me but I am quite hyper right now. One of the worst symptoms (other than the sleep issue and feeling fatigued all afternoon) is the heart palps that I get..I hate them!!! When my heart is beating over 100bpm it feels like it skips a beat and I hate that feeling.

Heres hoping the endo does something to help me on the 19th of december and I don't have to wait years before that happens!!


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## Prairie Rose (Nov 17, 2011)

You are very welcome.

To my knowledge...due to my own experience only.....an ultrasound can show nodules or abnormalities of the thyroid gland....
but the uptake scan can show how your thyroid is dealing with the iodine, measure rates, and more accurately diagnose.

I strongly encourage you to try to have that done to get your diagnosis and treatment options in order.

The propanolol helps quite a bit. It will slow your heartbeat and help prevent damage to that organ.

If your thyroid is in high overdrive, you have a few options.

One is, anti-thyroid meds.
Two is blasting the thyroid with radiation.
Three is thyroid removal.

Before the above can be figured out, however, that uptake scan is imperative.

Is it possible for you to get to another endo?


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