thyroid swollen but normal tests.. HELP

[danie17075rm]

Hi everyone.  I'm so confused and stressed out.  My hair is falling out rapidly, I have no energy, I'm having heart palpitations, I want to sleep all the time, mood swings, leg cramps, irregular periods, dry skin, rash on skin, always cold... and countless other symptoms.  My neck is extremely swollen.  It seems to be getting bigger on some days and smaller on some.  The right side is a little bigger.  My doctor took the tests and my tsh came out nomal.  It was 2.79 and 3.74.  She tested the fre t3 (3.16) and fre t4 (1.43).  She said these were all normal, and I have to get an ultrasound of my neck.  I begged her to give me an antibody test, but she won't.  She said they only do that with thyroid problems.  I guess my thyroid bulging out of my neck is not a thyroid problem.  I just wonder if anyone has any idea what is going on or what I should do from here?  I feel horrible and its making me depressed.  Can something in my neck be triggering this, or do you think my thyroid is triggering my neck to swell?  I would appreciate any info.. THANKS!!

Danielle

[borninquisitive]

I'll leave others to give you their opinions but read this and you might want to share it with your doc:

American Association of Clinical Endocrinologists:


“Until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range5 . Now AACE encourages doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.04. AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now.”

"The prevalence of undiagnosed thyroid disease in the United States is shockingly high - particularly since it is a condition that is easy to diagnose and treat," said Hossein Gharib, MD, FACE, and president of AACE. "The new TSH range from the AACE guidelines gives physicians the information they need to diagnose mild thyroid disease before it can lead to more serious effects on a patient's health - such as elevated cholesterol, heart disease, osteoporosis, infertility, and depression."

“If the thyroid gland doesn't work properly, neither do you. The thyroid gland, a butterfly-shaped gland located in the neck just below the Adam's apple and above the collarbone, produces hormones that influence essentially every organ, tissue and cell in the body6 . If thyroid disease is left untreated, it can lead to such complications as elevated cholesterol levels and subsequent heart disease, infertility, muscle weakness, osteoporosis and, in extreme cases, coma or death7”
http://www.aace.com/newsroom/press/2003/index.php?r=20030118

You want antibodies tested and your doc won't do it...well, you can have it done yourself without a doctors written orders:

http://www.healthcheckusa.com/lab_tests/Thyroid_Screenings/Anti-Thyroid_Antibodies

$70 and if you enter in code 12345 you will receive 10% off. Check to see if a lab is near you.

Best to you,
~Kate

[GravesLady]

Its too early for thyroid meds. to work their fullest for you to feel any effects (I could be wrong, some seem to think they are sensitive to med. and levels), which would be anywhere from 6 to 12 weeks.  However, regardless if psychological, the important issues is that you feel better. Most everything is psychological  related. If a tiny little pill gets you there, that's what matters.

To keep goiter/nodules at bay, would be a TSH at a suppressed level - 0.1 or less.  However sciences has done some research testing that show this not to be the case  or  a 100% accurate theory. Although, some doctors give it a try.
However, it could be psychologically achieved if you truly 100% believe it (mind over matter, healing through prayer, etc. Mind and prayer are powerful tools).


Good Luck!

GL

[danie17075rm]

It is scary to know that I may have to go on feeling like this for such a long time.  My doctor said I have to have something in my neck because it does not swell without reason.  I was up all night for the last two nights because my legs are killing me, and my swelling neck is so uncomfortable.  I have REALLY thick hair, but I'm losing all of it.  Everytime I touch my head a handful comes out.  I'm so afraid to even brush it.  I don't think there is one thyroid symptom that I don't have.  Could a goiter or nodule cause these symptoms while producing normal blood levels?  Could I have antibodies, and maybe hashimotos?  I just know I'm having extreme symptoms.  I don't feel a little weak, I can barely walk from one room to the other.  The heart palpitations are scary as well.  I have a 22 month old son (i'm 28) and I feel like I'm 90.  I don't have the energy to play with him like I used to =(.  I should also mention, when I first got pregnant, they said my hormones were way out of whack.  They let that go, but I got pregnancy induce hypertension and serious edema.  I heard that can happen from hypothyroidism too.  I was aslo a vegetarian for 15 years and had consumed a lot of soy.  I stopped now that I read it can cause hypothyroidism, but I'm probably alread ruined from it.  I go for the ultrasound on the 11th, but I have this strange feeling, it will not lead me anywhere closer to treatment.  I'm at a loss at what to do, other than lay in bed being bald.

[zaksmom]

Don't be surprised if you're told that they'll just monitor you.  All of my thyroid levels are considered to be "within the normal range".  Also, my neck is swollen, hard to swallow, so my thyroid is enlarged (called goiter) and has nodules (called multinodular goiter).  I have similar symptoms as you posted.  My endocrinologist said that I have "clinical hypothyroidism" and he doesn't have any method of treatment for that.  He said that they will just monitor the size of the goiter and lab work - once I'm out of the "normal" range, then they will treat.  Or, if the nodules change or goiter grows more significantly they will treat.  Basically, was told that I don't feel quite bad enough yet!  It really sucks to feel like total **** every day and be told that you're fine.  

I don't mean to make you feel worse, just be prepared that it is possible that if your labs are within the normal range, you may not receive any sort of treatment or help to feel better yet.  If your dr. does treat your symptoms, then all the better for you!    

good luck :)

[GravesLady]

AACE - American Association of Clinical Endocrinologists
positition statement on hypo treatment -  clinical practice  - guidelines for the evaluation and treatment 2006 Amended Version  

Treatment of subclinical hypothyroidism remains controversial, and recent arguments for and against treat-ment have been proposed . We believe that treat-ment is indicated in patients with TSH levels 10 µIU/mL or in patients with TSH levels between 5 and 10 µIU/mL in conjunction with goiter or positive anti-thyroid peroxi-dase antibodies (or both). These patients have the highestrates of progression to overt hypothyroidism. An initial dosage of levothyroxine of 25 to 50 µg/day can be used, the serum TSH level should be measured in 6 to 8 weeks, and the levothyroxine dose should be adjusted as neces-sary. The target TSH level should be between 0.3 and 3.0µIU/mL.

Subclinical hypothyriodism treatment is indicated with TSH  10.
In conjunction with a goiter or positive anti-thyroid peroxidase antibodies or both TSH between 5 and 10.
The target TSH level between 0.3 and 3.0
TSH test is a reflection of thyroid balance. It is accurate in most patients with auto-immune thyroid disease - including "hashitoxicosis".

[kitcurious]

That is exactly what my doctor has done. I have a goiter with nodules on ultrasound and a TSH around 6  (last one I saw, there's a new TSH test that prompted the rx but I can't seem to get a copy of my test results, like pulling teeth) and the regular doc put me on .025 mg levothyroxine per day.

I have been taking the med for almost a week now and, maybe this is psychological, but I feel kind of better for a very little while and then I feel just as tired again. There is also increased salivation and a bit of a head buzz/ache.

This is to convince the body that it has enough hormone which will keep the goiter and nodules from getting any bigger, is that right? The biggest nodule I have is 1.4 cm.

[GravesLady]

Doesn't make a difference if you have antibodies to Hashi.  Antibodies/Hashi is not treatable nor curable, nothing can be done about them. A lot of people have the antibodies to thyroid who never come down with thyroid disorders,  as well as, other autoimmune disorders. The symptoms if due to thyroid, would be from the hypo side of Hashi and level would relate this.  Levels and treatment  are solely based on thyroid levels.  There is not a guarantee that treatment with meds. will cure  symptoms.  If you read my other post here you would know my thoughts of antibodies/Hashi per  info. from reputable medical sites and thyroid Originations, Associations and US Government, etc.
MY Thyroid.com
Thyroid antibodies may remain positive for years and do not provide an indication of whether the person has normal or abnormal thyroid function. Furthermore, some patients with Hashimoto's disease may have negative levels of circulating antibodies, and conversely, patients with positive levels of thyroid antibodies may never develop thyroid disease during their lifetime. It is generally not useful to repeatedly measure levels of thyroid antibodies in the blood.

Johns Hopkins Autoimmune Disease Research Center
Currently, there is no treatment capable of stopping the autoimmune process leading to Hashimoto's thyroiditis.
Presence of these antibodies is not enough for a diagnosis of Hashimoto’s thyroiditis, since  percent of women in the population have these antibodies.

Thyroidmanager
A % of most populations have positive TG and TPO antibody test results in the apparent absence of thyroid disease by physical examination.

Medicinenenet
....antibodies are also present in lesser numbers of people with other thyroid diseases. Other autoimmune disorders such as Sjögren syndrome, lupus, rheumatoid arthritis, and pernicious anemia are sometimes positive for TPOAb. Small numbers (around 3%) of people may have TPOAb show no evidence of disease.

Thyroidmanager
A % of most populations have positive TG and TPO antibody test results in the apparent absence of thyroid disease by physical examination.

Medicinenenet
....antibodies are also present in lesser numbers of people with other thyroid diseases. Other autoimmune disorders such as Sjögren syndrome, lupus, rheumatoid arthritis, and pernicious anemia are sometimes positive for TPOAb. Small numbers of people may have TPOAb show no evidence of disease.

US Government panel guidelines set forth by U.S. Preventive Services Task Force (USPSTF) Jan 14, 2004
.....antibody presence or absence does not change the diagnosis of subclinical hypothyroidism (which is based on serum TSH measurements) or the expected efficacy of treatment

As I mentioned in the other post above,  AACE - American Association of Clinical Endocrinologists positition statement on hypo treatment - clinical practice - guidelines for the evaluation and treatment 2006 Amended Version as well as the US Government Guildines are of Jan 2004 states -
hypothyriodism treatment is indicated with TSH 10.
In conjunction with a goiter or positive anti-thyroid peroxidase antibodies or both TSH between 5 and 10.
The target TSH level between 0.3 and 3.0
TSH test is a reflection of thyroid balance. It is accurate in most patients with auto-immune thyroid disease - including "hashitoxicosis".
Your levels do not fall within these categories even if you have a goiter.

There are a lot of other health conditions that causes symptoms.  A lot share the same symptoms as thyroid symptoms.  Thyroid when levels are normal can't be blamed for every illness/symptoms, just because it is simple to do so. We should not blame thryoid for everything.  You might have to do what I do and that is to treat each symptom separately.  Have doctor or go to other doctors to check for other health causes.

Have further test regarding your neck, it might lead to another avenue and then go from there.

GL

[danie17075rm]

Well I really am not intending to blame my thyroid on everything but since the symptoms coincided with the swelling in my neck, I made a connection.  Also, my grandma has hypothyroidism, and my sis and mom have rheumatoid arthritis.  I know my symptoms can be caused by other things, but from what I read 3.74 is not really a great level for your tsh to be at.  Some say that endocrinologists will consider that hypo.  That too makes me mighty suspicious.  

[GravesLady]

Just because family has hypo or autoimmune disorder doesn't necessarily mean you will.  Although, it makes you more susceptible.  

Your neck swelling is the reason I suggested in my post above to have your neck/thyroid tested further.  You don't even know if you have a goiter or just thyroid swollen, in which case will probably correct itself in time. Even if you have a goiter doesn't mean you have a thyroid disorder/hypo and you need treatment, which your TSH does not relate or suggest to.
I don't know where you got that a TSH of 3.74 is not a good place to be, mine is 3.6 and I am Hyper/Graves' living with a nodule for 9 years. I know and advocate, that we are not all alike nor will we all feel or experience the same symptoms.  However, you must trust your doctor (after all, s/he is the one with the extensive and expensive education - not us on the internet in which there is a lot of misinformation, with most having their own agenda and not medical). Believe your levels, especially when repeated test relate the same. The levels you and others referre to, are not medical levels for diagnosing. I have been around long enough to know how and where these  levels evolved in the first place, which I will not go into so as not to offend anyone.

Hey, I am not a doctor - maybe your are sick! Search long and hard enough, and you'll  find a doctor to meet you wants and desires, I'm sure.

[danie17075rm]

Well no question about it I AM SICK.  I know what I feel.  I just wanted to know some things here, I didn't make a definite diagnosis.  I didn't say just because I have a family history that I have it.  Also..countless endocrinologists suspect a tsh over 3 to be hypo and will treat you.  I didn't make this up either.  I know myself, and my neck is not just "swollen".  I do know that.  It is large and my doc has told me it cannot just swell that big.  You can see it, and it is choking me.  She said it is a goitre or a nodule.  AND.. you can believe what you would like, but... whatever is in my neck IS 100% causing all my symptoms.  I don't care what my blood work says.

Even though recommended changes to clinical laboratory standards were announced last year, the American Association of Clinical Endocrinologists (AACE) identified changes early this year, and journals are publishing information about the findings, your doctor probably is still unaware that a major revamping has been done to the so-called "normal range" for Thyroid Stimulating Hormone (TSH) tests -- the primary blood test used by conventional doctors to diagnose thyroid disorders.

Until recently, the standard was that the normal range for TSH at most laboratories has fallen in the 0.5 to 5.0 range, with hyperthyroidism being below .5, and hypothyroidism above 5.0.

The new guidelines, however, the range for acceptable thyroid function, and thyroid treatment should be considered for patients who test between the target TSH levels of 0.3 to 3.0, a far narrower range.

[danie17075rm]

Also graves.. it is possible I have thyroid problems.  I'm not looking for a fake diagnosis, I am looking for help and to feel good like everyone else is.  I don't know why you have a something against this but I WANT TO FEEL HUMAN.  Don't be so quick to make judegments about people.  Also.. please look up about the tsh level.  Your doctor must be overdosing you.  3.6 is not good.  Maybe you don't even have a real thyroid disorder huh???  I believe you could have went to a fake doc, and made up the symptoms.  It doesn't feel good when someone is telling you that what you are feeling isn't true.  You are not me.  I want advice, not someone to tell me I am "making things up".  I'm not, so if that is what you think, please, I have enough stress and do not need your comments.

Thanks,

Danielle

[GravesLady]

Touché

I am only sharing with you info that I have read and collected, so please don't shoot the messenger.  Its up to you what you do with it and I guess we already know that.

My goal is to help and inform, not to alienate.  Sorry  you misunderstood and took me wrong.

Could you give me a link to the AACE announcement this year and other info. regarding reputable endos. and/or sites who do go by such levels, preferably Medical and Government, as you mentioned in your above post.
I hate to be giving erroneous info.  when there are more recent info out than 2004 and 2006 that states otherwise.
Its weird that AACE changed their guidelines so soon from just last years to this year.  Go figure!


I shared mine info., now share yours.

[danie17075rm]

Well lets see.  I believe this is from your own link.  If you read, it says that the optimal thyroid should not be above 3.0.

http://www.aace.com/pub/pdf/guidelines/hypo_hyper.pdf

http://www.aace.com/newsroom/press/2003/index.php?r=20030118

http://www.aace.com/public/awareness/tam/2006/pdfs/TAMTipSheet.pdf

http://www.aace.com/newsroom/press/2004/index.php?r=20040122

http://www.thyroid.org.au/Information/NormalTSH.html

http://www.drlam.com/physician_support/hypothyroidism.cfm

http://www.altsupportthyroid.org/tsh/tshrefs3.php

There are countless sites that say this.  More importantly though, is what the people feel.  I have read a lot about people feeling bad with these so called "normal" levels.   I don't need the AACE to tell me how I feel.  

[danie17075rm]

I posted my info, but don't see it for some reason.  I will post again if it doesn't show up.

[peppridge]

I become more confused the more I read. I too, goiter (getting bigger), bloo9d work ok, nodule....now complaining of weak legs, body aches. Did RA bloodwork, all fine. Endocrinologist didn't want to do a biopsy of the nodule again. Said he didn't want to me throught that. It is uncomfortable, but bareable. I really think I should have one done on the goiter, which seems to be increasing. Anxiexty seems to be an issue as well. primary wanted to put me on medicine for that, no thanks. Nor, do I think it's all in my head. Are the hormones all out of whack here?

[GravesLady]

Most cases, unless autoimmune related, goiter and thyroid disorders per levels, are independent from each other.

If the goiter/nodule is too small even though growing, FNA probably couldn't get enough of tissue for a diagnose. In this case the doctor might take the wait and see approach to see how big it gets and how fast it grows.  When a certain size then FNA can be done.  However and regardless, if goiter/nodule is growing and at a fast rate, then surgery to remove the goiter/nodule/thyroid, is recommended.

Anxietyy/stress is not good for any health issues.  By taking medication it will ease our anxiety and/or stress that is putting more of a strain our illness (goiter/nodule, etc,). That is, not taking meds. can possibily make our illness worse. It has nothing to do with the mind nor mean that we are crazy or a weak person. But it does put more of a strain on our body therefore our illness.

I take anxiety medication to help ease the effects from my Graves' Disease.

Good Luck!

GL

[Hypokaren]

I have been suffering symptoms of hypothyroidism for a couple of years.  I've done the round of tests - neurologists, rheumatologists, immunologists and according to results, I'm as fit as a trout.  I went to a naturopath a few weeks ago to get some herbs and he referred me to a GP with an interest in endocrinology.  She had a hammer tests which showed that I am clinically hypothyroid and an ultrasound showed multiple nodules on both sides of the thyroid.  She has prescribed a natural thyroid supplement with T3 and T4 called Armour - so can't wait to get started on that.  She referred me to a site www.stopthethyroidmadness.com.  If you haven't seen it - might be interesting.  I live in Sydney so have the good luck here of having ready access to great doctors once you know who you need to see.  My GP did say though that some forms of Hashimoto Disease or hypothyroidism just don't show up on blood tests, and that you need to look for the other clues like symptoms and ultrasounds to provide a diagnosis.  Good luck.

[sjed9]

DANIE 1705
Hi, I also have a swollen thyroid that makes it hard to talk and swallow, i also feel like i am 90 years old , no energy, joint pain and many more. I also have a 4 month old that i cannot take care of. But i have been like this for 3 years and it has gotten worse since childbirth. I do feel what you are going through .. I understand the feeling to just want to be human!! My thyroid tests came back good and my grandma had thyroid problems and a goiter. Recently, the doc did find that i had a severly low B12, that a lot of vegitarians and vegans have problems with there b12 levels i was never a vegitarian though. That is all I know until my next check up in 5 weeks. Maybe take a look into that?  This is only day 3 on the vitamin.... But if it works i will let you know.
sarah

[TamraW]

Danie, I have a five-year-old. I am 37 years old and I just think I'm too young to feel 80. Some days I'm very depressed about my condition, especially since my little one is so hyper and I just don't have the energy to be a good mommy. I am on my third endo right now. I refuse to let a doctor tell me my levels aren't high enough. Each person is different. I believe my problem is mainly parathyroid, because of my fluctuating calcium and PTH levels, but I do have three nodules on my thyroid area as well. Those nodules hurt and cause pain in my ears and chest. Also, I have daily aches, pains and migraines, kind of like I have the flu but without the nausea.

Anyway, as a mommy, I feel your pain. If you don't think your endo is really listening to you, my advice would be to switch.

Also, there's a doctor forum on this site. Have you tried asking him about your thyroid?

Tamra