Thyroid tests are normal?? Are you sure?

[veronicka]

Ok, hi, i was referred here by someone else. Here's my story, please let me know what you think.

I am the third of 4 daughters. My grandmother on my mom's side had hypothyroidism and blew up even though she was always thin. No one knew this until she was well into her 60s. As a child i was always very thin, it wasnt until i hit puberty at 10 that i started to gain weight. All of my sisters have always been super thin, even now as adults they weigh between 100-130lbs. Here's the thing, we always ate the same things,no one ate more than the other, and no one exercised, yet i was always bigger. No one in my family ever understood why. I have consistently gained 10 lbs every years since I turned 16. During a pap smear about a year and a half ago my gyno was checking me out and she said that when she felt my throat before the exam that she thought my thyroid was a big enlarged. so she ordered i had some tests done. when i came back the ladies at the front desk just told me that everything was normal but they didnt show me anything. a few months ago i read that most thyroid tests dont always catch hypothyroidism. I'm up for a pap next month and i dont know if i should ask to have it checked again. what do you all think?

[nonstickpam107]

If you have read this WHOLE thread, you already have your answer. Make SURE they do a: TSH, FT4, FT3 and NOT a T3 Uptake. Even if it's within the lab ranges, that doesn't MEAN you don't have thyroid disease. Also, ask them to do a TPO antibodies test (tell them your relatives have Hashimoto's...and you want to know if YOU do). You can ask for your own copies of lab results...they belong to YOU, not the doctor, and laws prevent them from saying NO to you.

Pam

[veronicka]

thanks pam

[nonstickpam107]

If you need a Top Doc's list, or help finding a thyroid doc in YOUR area...PM me, or post.

Pam

[nonstickpam107]

Bumping for newbies.

Pam

[landis]

Hey, I posted a thread a "cold all the time" and someone suggested I come over here. I read part of this thread but GEEZ it is SO long. Let me see if I get this straight. I go for blood tests every January. I am 45 years old so my doctor suggested I get my thyroid tested this last time. The only one I can see that they did on the lab report was TSH and it was 3.19. Does that mean I COULD be hypothyroid? The other symptoms I have besides always freezing are VERY fatigued al the time, very dry and brittle hair and quite a bit of hair loss although it is hard to tell since it has always been very thick and lack of ability to concentrate. I can't tell a difference in my skin really but do have considerable joint pain.

[baxter]

Well my doctor’s appointment was enlightening….she went over my health history , did her exam and told me that I have a goiter. Then she wrote out my orders for the lab (all the things mention here plus a few others) they took about a gallon of blood and I have to go back on the 28th.

This goiter thing is freaking me out though…I feel like I am going to end up on the Discovery Channel or something. It’s kind of scary.

Lori

[nonstickpam107]

Lori, here's something that will 'enlighten' you. A 'goiter' is nothing more than a swollen thyroid gland. That's all it is. Many times patients who have Hashimoto's autoimmune hypothyroidism will be having an 'antibody war' going on and the thyroid swells...mine got pretty big at times, depending on how high and active my antibodies were....I'd go through periods of feeling like I would choke on my food (and even WATER).

I'm so happy this doctor of yours is doing all the tests and is knowledgeable!! YAY!!! Getting hormone into your body (thyroid hormone) will actually shrink a goiter down. Mine shrank and here I am, six years later, and my thyroid looks like a shrunken little walnut on a ultrasound now, lol.

Hang in there...you'll soon be on your way to better health and energy!!! Let us know how you are doing!!

Pam

[baxter]

Thanks for the reassurance Pam...I need it. I have actually had that choking feeling off and on for years and it has been bad lately so I am glad to know what it is.

I will let you all know as soon as I know more-my next appointment isn't until the 28th. I was just relieved that I didn't have to tell her what tests I wanted ran. She just knew. Glad I found her on the top docs list.

Lori

[Lilgrnize]

Lori, I have Hashi's and have the swelling off and on constantly...that's how I can tell I've pushed myself too much physically or I'm undermedicated. I'm on thyroid meds, but still not to the point I can make it thru a full day without crashing. Normally, my thyroid starts to swell, and the skin in that area gets red, in the afternoons, but when I'm overextending myself, I wake up with the swelling and redness.

My mom teases me that I look like one of those lizards who's throat swells and turns red when it's ready to mate...little does anyone know, mating is the last thing on my mind when I hit that point of exhaustion! That's the only poor attempt at humor we found so far to get us thru this disease!

[nonstickpam107]

Niki, Do you take selenium? My doc told me this (I already was taking it, heh heh). Selenium can lessen the antibody attacks strength....I take 200mcg's a day (and you shouldn't take more than this)...have for about six years now. My daily multi (a powdered/in capsule one, NOT a tablet one) has that already in it...but if yours doesn't, make sure you get the non-yeast type selenium.

Pam

[Lilgrnize]

No, Pam, I quit taking the selenium, as I thought it just helped with t3 conversion, and my ft3 is at the top of the range now...didn't realize it helped with the antibodies, too...I'll pull my bottle out and start taking it again! Thanks for the tip!

I've come to the conclusion that I am battling an adrenal issue as well...my ft's are both high, and I'm still feeling no better than day one, and what I am feeling isn't constant. I'm having dramatic swings throughout the day...I feel a bit better for awhile, and then I crash and am almost too weak to sit up, then I get another short burst of energy a couple of hours later, then crash again. My doc is great with thyroid, but I don't think he knows much about adrenals, and keeps trying to steer me in other directions (or increase my Armour, but I know that's not the answer, as I started having mild hyper symptoms immediately and had to back down), so I may be doc shopping again.

[landis]

Pam, did you see my question above? Just wondering.

[nonstickpam107]

Landis, MY doctor uses the new range for TSH (.35-3.0) with anything over a 3 suspect for it. JUST a TSH, (as you can see reading this thread) doesn't 'cut it'. We have lists of Top Thyroid Docs, and MOST of us have had to go to a doctor that knows which tests to run, and then how to interpret...not the family doc who got six hours of teachings on the thyroid.

You need a: FT3, FT4, TSH, and anti-TPO antibodies. You also need: ferritin, B12 and iron testing, because low iron can mimic hypothyroidism.

Niki, I feel awful when my FT4 is in high range....and have you had a ferritin test? Cuz low ferritin can interfere just as badly as adrenals. I wouldn't think adrenals in YOUR situation because you are tolerating the incoming hormone (you wouldn't be able to do that if your adrenals were fatigued). Many of us have our ferritin or B12 go low and that makes the incoming thyroid hormone intolerable too until it's brought up.

Pam

[Lilgrnize]

Pam, my ferritin was 147. My b12 was at the very low end of the range, so he has me on weekly b12 injections. I've been taking those for over 8 weeks now. The only real difference I can see is I pee like crazy the day I have the shot, otherwise I'm retaining water all the time.

He thought I was still fatigued because I don't sleep well, so he put me on a sleep aid/muscle relaxer (because my joints also ache so much I can hardly get out of bed). I've been taking it for about 4 weeks, and it hasn't helped with sleep...I wake up at exactly 2:30 am, 3:30 am, 4:30 a.m. every single night, no matter what time I went to bed, etc. It's always at those exact times...I just wake up, clap eyes on the clock, and go right back to sleep.

They keep telling me the sex hormones aren't low...

He thought I might be celiac because of major stomach problems I've had for years...I've been gluten free for a couple months now, and the last of the tummy troubles seem to be better, but hasn't really improved the other symptoms.

[landis]

Thanks for answering Pam. I am making an appointment with and endocrinologist and taking your advice on tests with me. I am pretty sure something is wrong. My temp is running consisently low and I just don't "feel" right. Thanks again!

[nonstickpam107]

Landis...I don't want to disappoint you...but a good many of us (have you read this whole thread?) have been to one endo after another...but not been treated. 'Most' endo's are well versed in diabetes...and won't even DO anymore than a TSH test. If you need a list of good thyroid doctors near you, I suggest you use the docfinder at www.armourthyroid.com and also this site: http://thyroid.about.com/cs/doctors/a/topdocs.htm

I went to five doctors over the course of 14 years and by the time I found a good thyroid doctor (my PCP of 14 years...um..my EX PCP...wouldn't help me and made SURE he only referred me to endo's he'd already 'talked' to) I had collected four other autoimmune diseases (I have autoimmune Hashimoto's hypothyroidism, as 98% of all women WITH hypothyroidism have). Good luck...if I can help in any way, please don't hesitate to let me know.

Pam

[landis]

Originally Posted by nonstickpam107

Landis...I don't want to disappoint you...but a good many of us (have you read this whole thread?) have been to one endo after another...but not been treated. 'Most' endo's are well versed in diabetes...and won't even DO anymore than a TSH test. If you need a list of good thyroid doctors near you, I suggest you use the docfinder at www.armourthyroid.com and also this site: http://thyroid.about.com/cs/doctors/a/topdocs.htm

I went to five doctors over the course of 14 years and by the time I found a good thyroid doctor (my PCP of 14 years...um..my EX PCP...wouldn't help me and made SURE he only referred me to endo's he'd already 'talked' to) I had collected four other autoimmune diseases (I have autoimmune Hashimoto's hypothyroidism, as 98% of all women WITH hypothyroidism have). Good luck...if I can help in any way, please don't hesitate to let me know.

Pam

No, you did NOT disappoint me and I am VERY grateful for your suggestions! I couldn't get into the first site but found three doctors close to me recommended on the second one. I am so thankful I found this out first!

[rach]

I'm sorry but I can't help but notice all of the negativity that is directed towards the medical profession. Perhaps it is different in the US with all of your litigation and health insurance but often test results cannot be taken at face value due to false positive results etc. Doctors undergo extensive training and in the UK anyway, endocrinologists are experts in their field. With every decision a lot more is taken into account, other than the face value of test results. And the decisions that are made come from years of experience, not just reading a few textbooks. I'm sorry to rant, and I'm sorry if anyone has had any unfortunate experiences, but I feel confident where I am to leave specialist matters to the specialists.

[baxter]

Unfortunately my life (or what's left of it) is too important to me to just leave it up to others. Doctors are humans and they are not the be all end all when it comes to answers.

It is our responsibility to know what is going on with our bodies.

Just my opinion.

Lori

[rach]

I quite agree. Its very important to watch out for yourself but just from reading some of the posts it seems that a little knowledge can be a dangerous thing. Just always consider the source of your information - that's all I'm trying to say.

[inatic]

You must not be reading the UK boards either. THey are full of people complaining just as they are here in the states. IF by chance they do get diagnosed and treated with T4. It is nearly impossible to find docs that will treat with T3 or amour AND is so, they under medicate.

[nonstickpam107]

rach..you need to see some of the UK lists of patients that are dying from myxedema from untreated thyroid disease, etc. My own Mother died from Hashimoto's Encephalitis...although first the disease was WRONGLY diagnosed and she got to stay in a lovely insane asylum for five and a half years, and undergo electric shock therapy...all she REALLY needed was medicated properly.

There isn't ONE day that has gone by that I have NOT read, or received email from the UK and other countries with socialized medicine asking for a way to get proper care for thyroid disease. The only people who aren't aware of this is the people without thyroid disease.

Pam

[rach]

[quote=nonstickpam107]My own Mother died from Hashimoto's Encephalitis...although first the disease was WRONGLY diagnosed and she got to stay in a lovely insane asylum for five and a half years, and undergo electric shock therapy...all she REALLY needed was medicated properly.


I'm very sorry to hear about your mother. Its obviously something you still struggle with. I didn't realise they still had such things as 'insane asylums'?

[nonstickpam107]

They like to call them 'Mental Institutions' but it doesn't appear that way when it's your loved one. Are you aware that the projected rate of women having Hashimoto's in the coming year is TWO out of every TEN...and that only one out of every 35 will get adequate treatment? At least in the US...the figures are more grim in the UK.

That the TSH test is a test of the pituitary and not the actual measurement of the thyroid hormones?

Um, thanks....something I still "struggle with?" as if someone wouldn't if it were THEIR mother?? Oh, I might add that I have a medical background and have been a thyroid patient advocate for the last 12 years, with research in thyroid disease over the past 20 years. I hope you (or your relatives) never have to suffer with thyroid disease.

Pam

[nonstickpam107]

rach, this is for you....the new UK thyroid disease forum/board has just been launched, to help all those thyroid disease sufferers in YOUR country:

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

I hear most of the patients and prospective patients in the UK are very glad to have this board.

Pam

[buniphuphu]

Pam-I just wanted to thank you for helping me understand my test results. I found a dr willing to treat me from the Top Docs list. He put me on Armour (2gr), increasing to 3 gr in two weeks, and to 4 two weeks after that. I know that's awfully fast, but he said with my height (5'9") he thought I might require more...and I'm sure my weight plays a role in that too (300 lbs) , but he was sensitive enough not to mention it. If I feel hyper, I'm supposed to call, and we'll back off on the dosing and increase slower.

So I started the Armour on Sunday, and both Sunday and Monday I felt great. I felt younger than I have in years. I had energy and didn't feel the need to take a nap.

Then yesterday about 1, I crashed. I was so tired I couldn't keep my eyes open. Today I took my pill at 9 again, just like every day since I started, and I was dragging by 11!

Is this normal?

Thanks for your help.

[Lilgrnize]

I'm sure Pam will be here and c