Tell me about your Thyroid problems please! :)

15 years ago

Hi all,

I need your advice and thoughts! :) A year and a half ago, I was diagnosed with Hashimoto's disease (hypOthyroidism) and was put on Thyrolar which seemed to help me a lot. Then it went off the market and we used a compounded version which didn't seem to help me much so I haven't been on a thyroid med for approximately a year.

Fast forward to a 25 pound increase on top of being 25 pounds overweight already (GAH!), EXTREME fatigue, no memory and then my doctor's appt. about 3 weeks ago; she found, doing a physical exam, a...::Gulp!:: goiter (an enlarged thyroid gland). But it's barely so. Soooo, I got my labs done (which I haven't yet seen) and today I went to the radiologist where I swallowed my radioactive iodine pill and then they took ultrasound pics of it.

I saw the pictures and from what they could tell, there is a nodule and is enlarged on my left side. I go back tomorrow for my 24 hour pics and then they'll fax everything to my doc.

My aunt had Thyroid cancer when she was a little older than me (I'm 33) and my Nana has Hashi's also. I'm a tad nervous, though I know MOST cases like mine are pretty normal. I've been reading up on everything and I really want to hear some of your stories. :)

Blessings and thank you!

Haley (Nervous Nelly)

Featured Answer

lydia1959

15 years ago

I was diagnosed about 5 years ago and it's taken me that long to start feeling better. I most likely had Hashimotos for many years before it was diagnosed because I've always had a normal tsh... I just have super high antibodies.

I've had a goiter several times (couldn't see it, but the doctor could feel it and I was always hoarse when I had it). I've been on T4 (synthroid), Armour Thyroid (the old formula and the new), a mix of T4 and T3 and now just compounded T3. I am also on cortisone. I had a tough time finding out what worked for me. Although Armour Thyroid is the preferred choice for most people, I cannot tolerate it. I had panic attacks the first time I took it, the second time (more recently) I gained 15 lbs in 3 weeks and felt like I was on my death bed.

I've had the thyroid ultrasound, didn't have any nodules thankfully.

You might ask to try some T3. Start very slow, the stuff is potent. I take 150 mcg a day which is considered a high dose. Your doctor probably wouldn't let you take it alone (I drive an hour each way to see a doctor that will), but yours may be open to a mix of T4 and T3. I just reread your post and I guess Thyrolar is a mix of T3 and T4? Maybe try a T4 like Synthroid plus T3 (Cytomel)?

Good luck Haley! Keep us updated, okay?

Here is a link that might be useful: A good website (the book is great too!)

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Comments (11)

bigfoot_liz
15 years ago
i can't add anything as far as stories, i've actually wanted to ask about everyone's experience w/ thyroid problems as i remember several KT'rs have issues too. i've been told for several yrs i needed to get my blood work done due to several problems pointing to thyroid and ovaries. i haven't because i pass out when getting blood drawn (panic attack) and then last yr changed my insurance. well come jan i am getting it done! i'm tired of all of these problems, more so than afraid of having a needle biopsy on my enlarged thyroid (another avoided test) :-( i'm interested in hearing everyone's stories too... ~ liz

BTW Haley, i have to thank you for mentioning Sparkpeople here! i recently starting using it and love it! Thanks!
oldgardener_2009
15 years ago
I've had a goiter since 1993 with no symptoms. They've poked it with needles and scanned it several times. Once in a while they ask me if I have symptoms.

Good luck with yours, don't blame you for worrying.
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hale_bopp
Original Author
15 years ago
Well gosh, Liz! I WISH I had told you about Sparkpeople, but it wasn't me! :) I may have to go check it out... I have no idea what it is, LOL!

That's good to know, OG! Though I can't feel it or see it, I HATE knowing that there's something wrong with my thyroid. Stupid thyroid... >:(
hale_bopp
Original Author
15 years ago
Oh THANKS, Lydia! Awesome information, and thank you for the site! Synthroid is on the list of possible meds doc was thinking of putting me on. She received the lab results, so she'll know when I see her. I can't wait to feel better! : D
tami_ohio
15 years ago
Hale, I had a lump on the left lobe of my thyroid in 1991. They did a biopsy with a large syringe & long needle in the office. I don't remember taking the radioactive pill for any tests, but could have. They did surgery and removed 2/3 of the left lobe, and I have been fine since. To my knowlege no symptoms. I am overweight, but that can be heredity! I can not take synthroid as it makes my skin crawl. Dr. (who I didn't like, horrible bedside manner and scared the crap out of me) told me that he only put me on it to prevent any future developments. The last time I saw him was for my follow up after surgery. He was also rude. My PC does bloodwork every 3-6 months to keep track of thyroid and blood sugar. I wish you luck. don't panic.

Liz, ask to lie down when you have blood drawn. I do, each and everytime they take it! If I don't, I slide right out of the chair they sit me in to take it! When they did my needle biopsy, they had me laying down, as it makes it harder for you to move when they do it. It wasn't really bad, but I have a thing about needles. Having a dr that is rude and crabby, three hours after my scheduled appt didn't help! And I had to pay a baby sitter to sit there for three hours doing nothing! Twenty years later still makes me mad. Actually my surgery was done Jan 24, 1991.

Tami
donna_oh
15 years ago
About 20 yrs ago I had a lump on my thyroid--after testing I was sent to Cleve Clinic for the removal--I was scared to death--Thyroid was removed & I have been on Synthroid ever since--Needle biopsy didn't hurt one bit--So far OK!!!

Easy to say, but don't be worried, OK--

Donna (^_^)
marylmi
15 years ago
I also have nodules on the left side. Have been through all the tests including the needle biopsy which they just done again this past summer(every 5 yrs.). Mine doesn't bother me & you can't really see any difference in the two sides. I'm hoping it will shrink on it's own! I don't take any medicine for it. I am sure they will do a needle biopsy on you which you should have and it is a piece of cake...really!! I was so nervous when I had the first one but nothing to it. And I did the same as you, I read everything about it, but your right, most of the cases are not cancer..but I was so relieved to get the biopsy results back! I go every 6 mths. so he can check to see if it has gotten any larger. Good luck with yours & hopefully they will do a needle biopsy soon to put your mind at ease.
hale_bopp
Original Author
15 years ago
::Biiiig deep breath:: Okay! I am trying really hard not to think about that needle- I gave birth twice for goodness sake, ROTFL! But it's so very good to read your stories so that I can get an idea of what comes next. :) It's very interesting to hear all the different outcomes and prescribed meds! Thanks again, ladies!

Blessings,
Haley (Not SO Nervous Nelly ;)
joann23456
15 years ago
I had Graves' disease in the late 80's. (That's overactive thyroid - I lost weight while eating like a pig, which was nice, but my resting heart rate was 112 and I thought I was going nuts, which wasn't so nice.:) The doctors eventually used radioactive iodine to kill my thyroid, so now I'm in a similar situation to you, with an underactive thyroid.

Your symptoms sound like your thyroid is definitely underactive, and you'll need a synthetic thyroid hormone, like Synthroid. Sounds like you needed to keep taking it for the Hashimoto's, with the symptoms you're having. It does take awhile to get the meds and dosage right, and it's never perfect, but it's pretty good.

One thing to know about synthetic thyroid hormones is that they're not interchangeable. This is one case where you don't want to go with the generic, unless you started with the generic. (At least that was true 4-5 years ago when I last checked - not sure about now.)

I do understand your concern with thyroid cancer, given that it's in your family and that Hashimoto's is associated with a higher risk for the cancer. I guess all you can do is to keep up with your treatment and keep in mind that if the worst happens and you do get thyroid cancer, it's one of the most treatable cancers. Very, very few people die of it, even after 30 years. Not that you want to get it, of course.

Good luck. I know how awful it is to feel so tired all the time. Even with treatment, you'll have some of that, but you get used to it.
kathyg_in_mi
15 years ago
DD has Hashimoto's, diagnosed when 10 years old. She's been on Synthroid since then and when she goes off it (stupid college student) she falls apart! Now she is a doctor and stays on it!
I started on Synthroid last year. What a difference in my life. I have energy! When tested my thyroid was in the high normal range. I told the doctor that that wasn't good enough and he raised my dose. Now I am doing a happy dance with how I feel.
Kathy G in MI

Tell me about your Thyroid problems please! :)

lydia1959

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