Newbie with big neck!

[SnoodMama]

Hi, I'm a newbie here and just wanted to say hi. I'm not sure what's up, yet, but my thyroid is definitely swollen and pressing on my windpipe. It is a little bit larger on one side than the other, which concerns me because wouldn't Hashimoto's be more uniform swelling?

Anyway, I'm getting an ultrasound on Saturday morning (in 4 days). My TSH levels were normal 2.1 about 7 months ago. The last year has been strange. Last spring I had depression and anxiety and couldn't sleep or eat and lost 20 lbs. Come September I started feeing better and have put back on my 20+ pounds and have been tired and can't stop sleeping. Other symptoms I've got... outer 1/3 of eyebrows thinned out, finger nails all dry and weird looking. I look terrible- like my health has totally gone to pot, like I'm aging at rapid speed. I'm 42 years old, by the way, my grandma and aunt had thyroidectomies but I don't know at all what they had.

So, trying to be positive here... I hope they can figure out what this is, give me a nice pill that makes me feel like a new person and I'll be merrily on my way. Hehe. I can hope, right?????

Thanks for having this group!

Lynn in Los Angeles

[Andros]

Hi, I'm a newbie here and just wanted to say hi. I'm not sure what's up, yet, but my thyroid is definitely swollen and pressing on my windpipe. It is a little bit larger on one side than the other, which concerns me because wouldn't Hashimoto's be more uniform swelling?

Anyway, I'm getting an ultrasound on Saturday morning (in 4 days). My TSH levels were normal 2.1 about 7 months ago. The last year has been strange. Last spring I had depression and anxiety and couldn't sleep or eat and lost 20 lbs. Come September I started feeing better and have put back on my 20+ pounds and have been tired and can't stop sleeping. Other symptoms I've got... outer 1/3 of eyebrows thinned out, finger nails all dry and weird looking. I look terrible- like my health has totally gone to pot, like I'm aging at rapid speed. I'm 42 years old, by the way, my grandma and aunt had thyroidectomies but I don't know at all what they had.

So, trying to be positive here... I hope they can figure out what this is, give me a nice pill that makes me feel like a new person and I'll be merrily on my way. Hehe. I can hope, right?????

Thanks for having this group!

Lynn in Los Angeles

Lynn; hi and welcome to the board.

Of course we know that something is wrong because your thyroid should not be swollen at all. Do you have swollen lymph nodes in the cervical area as well?

I am so glad you are getting a sonogram; really glad and you must let us know the results of that.

Have you had any of these antibodies' tests?

TSI (thyroid stimulating immunoglobulin),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/unders...s/thyroid.html

Are you saying that you in fact have been diagnosed with Hashimoto's?

I do think the TSI test is important as you may be teetering on the hyper side. Many of us have flip flopped for years.

[SnoodMama]

Thank you Andros. No, I haven't been diagnosed with anything yet. I'm just at the start of the journey. The only test I had was TSH 7 months ago. I think after the ultrasound on Saturday they'll decide which specialist I should get referred to and then the specialist will start doing the more specific tests.

The flip-flopping between hyper and hypo sounds like quite a roller coaster ride. This is all new to me. I'll go read that link. Thank you for your response! I will definitely keep you posted on what happens.

[Andros]

Thank you Andros. No, I haven't been diagnosed with anything yet. I'm just at the start of the journey. The only test I had was TSH 7 months ago. I think after the ultrasound on Saturday they'll decide which specialist I should get referred to and then the specialist will start doing the more specific tests.

The flip-flopping between hyper and hypo sounds like quite a roller coaster ride. This is all new to me. I'll go read that link. Thank you for your response! I will definitely keep you posted on what happens.

I am sure that we all will be very interested in following your case and please do let us know how the ultrasound goes and what they have found.

[SnoodMama]

I paid out-of-pocket to have an ultrasound today rather than waiting 3 more days till Saturday. I'll get the results back in 24 - 48 hours. I know she turned the doppler on, so I'm thinking she may have found a nodule. I was trying to read her demeanor, but with no luck.

I wonder, is it possible to just walk into a blood work lab and ask for these thyroid tests and pay out-of-pocket? I guess I'll call around and ask. Hey, I'll be my own doctor! Unless I need surgery or a prescription! LOL.

I'll keep you all posted.

Lynn

[lavender]

I think you can get your own labs done at Labcorp, but you probably will need a doctor to help you with a treatment plan. Thyroid problems typically require medication, surgery or both.

[SnoodMama]

Hi, ok I've got my ultrasound results, but in typical fashion my doctor has buggered off so I don't get any interpretation from him. Here's the summary of results. So, I *think* I might know what this means, but I'm not sure.

1. Multipule nodules
2. One large predominantly cystic nodule in right lobe

They said that there are three well-circumscribed nodules which are well-formed and show no evidence of cyst formation on the left. The right side of the thyroid is mostly occupied by one big nodule that is predominantly cystic measuring 47.3 x 33.1 x 37.7 mm. And there's another nodule in the isthmus that is well circumscribed without calcifications.

So this sounds like polycystic goiter. They have referred me to an endocrinologist and maybe mentioned something about an MRI. I'm presuming they are going to want to biopsy this so then I'm in that 5% chance of cancer range now?

I have to read more what the "well circumscribed" (I think that is not the typical morphology of a cancerous growth, right?) I don't know what solid vs. cystic means, but I think cystic means fluid filled?

Off to do more reading.

Lynn

[Andros]

I paid out-of-pocket to have an ultrasound today rather than waiting 3 more days till Saturday. I'll get the results back in 24 - 48 hours. I know she turned the doppler on, so I'm thinking she may have found a nodule. I was trying to read her demeanor, but with no luck.

I wonder, is it possible to just walk into a blood work lab and ask for these thyroid tests and pay out-of-pocket? I guess I'll call around and ask. Hey, I'll be my own doctor! Unless I need surgery or a prescription! LOL.

I'll keep you all posted.

Lynn

See if there is this in your area.. http://www.healthcheckusa.com/

Please let us know about the ultrasound when you can! Good to hear from you!

[SnoodMama]

Hi, so I've been trying to understand the ultrasound results better and doing a lot of reading.

To recap, there's a large "predominantly" cystic nodule 47 x 33 x 37 mm occupying most of the right love. "Anteriorly adjacent" to the isthmus is a "solid well circumscribed nodule without calcifications" measuring 26 x 11 x 12 mm. I think this might be the one down low in my front causing the choking sensation. I think the cystic large one is a little sore, maybe it has some blood inside it? There's also 3 smaller solid nodules in the left lobe, one is 14 x 5.3 x 10 mm.

I also got my blood test results back and all are in the normal range. Are these the older fashion tests? I printed out your list of tests Andros and gave it to the doctor and this is what they gave me... argh!

FT1 1.9 (1.2 - 4.9)
T3 Uptake 32% <24 - 39>
T4 Total 5.9 ug/dL <4.5 - 12)
TSH 2.81 (0.45 - 4.5)

So, of course this was a 3 day weekend, and I'm still waiting to call the endocrinologist tomorrow and see when I can get in to see them. I'm thinking they'll probably want to do the Fine Needle Aspiration on the two largest nodules. Or maybe they'll want to do a radioactive Iodine uptake scan to see if the nodules are "hot" or "cold" Do they drain large cysts like the big one?

I wonder how long it will take to get in to see the endocrinologist. I actually have one endocrinologist referral through my HMO and one name of an endocrinologist at UCLA that I may just pay extra to go see.

Now the waiting begins. I am trying to decide if I can just deal with this choking sensation, and avoid surgery. But I play a lot of tennis and I don't know... I tend to wash my hair and get dressed which are activities that bring on the choking, coughing fit. I wonder if there's a surgery in my future or if I should just try to wait and see. Maybe after they drain the large cyst I'll feel less pressure? Problem is, I think that big one may not be the one causing most of my symptoms. I'm predicting the doctor won't want to operate. But I'm really just making all this up as I go along!!!!

Sorry to ramble here. I'm tired and it is late. I'm kind of surprised my hormone levels were normal because I'm tired, forgetful, have thinning of the outer 1/3 of my eyebrows, dry skin, funky stuff with my fingernails, and weight gain and a really bad bout of depression in the past year. I was hoping the thyroid might explain some of my "crazy". Ugh.

Lynn

[lavender]

Those are some outdated tests! How frustrating! I would recommend TSH, FREE T3 and FREE T4, TSI, TPO and Thyroglobulin. It is important to get the FREE T3 and T4 tests, because that will give you a more accurate measure.

I would recommend RAIU, radioactive iodine uptake and scan, to evaluate your cysts, depending on what they find, you may then need fine needle aspiration.

I am not commenting on your Ultrasound because I have no ideal how to interpret those.

I have never heard of draining a thyroid cyst.

[SnoodMama]

Yes, I'm very frustrated about the blood tests. I knew that I wanted the newer tests and I even printed out the list of the newer tests and gave it to the doctor and he said OK. This is what I got back! I totally understand the importance of measuring the bioactive hormone, not the total. I guess next time I have to follow my test tube into the laboratory and nag the technician. Funny, because I used to do radioiummuno assays in graduate school to measure estrogen levels in blood. Actually, they were really difficult (done manually) to do and drove me up the wall. LOL. I tried my best, but the wires still got crossed.

[GD Women]

I wouldn't say any of the test are old fashioned. Each has their particular purpose.

I must say this is about the first time I have seen FT1 done. Scientifically there is little known about FT1 and FT2 and their purposes, etc. They do know that they are not as important as FT3 & FT4.

Good luck with your endeavors.

[Andros]

Hi, so I've been trying to understand the ultrasound results better and doing a lot of reading.

To recap, there's a large "predominantly" cystic nodule 47 x 33 x 37 mm occupying most of the right love. "Anteriorly adjacent" to the isthmus is a "solid well circumscribed nodule without calcifications" measuring 26 x 11 x 12 mm. I think this might be the one down low in my front causing the choking sensation. I think the cystic large one is a little sore, maybe it has some blood inside it? There's also 3 smaller solid nodules in the left lobe, one is 14 x 5.3 x 10 mm.

I also got my blood test results back and all are in the normal range. Are these the older fashion tests? I printed out your list of tests Andros and gave it to the doctor and this is what they gave me... argh!

FT1 1.9 (1.2 - 4.9)
T3 Uptake 32% <24 - 39>
T4 Total 5.9 ug/dL <4.5 - 12)
TSH 2.81 (0.45 - 4.5)

So, of course this was a 3 day weekend, and I'm still waiting to call the endocrinologist tomorrow and see when I can get in to see them. I'm thinking they'll probably want to do the Fine Needle Aspiration on the two largest nodules. Or maybe they'll want to do a radioactive Iodine uptake scan to see if the nodules are "hot" or "cold" Do they drain large cysts like the big one?

I wonder how long it will take to get in to see the endocrinologist. I actually have one endocrinologist referral through my HMO and one name of an endocrinologist at UCLA that I may just pay extra to go see.

Now the waiting begins. I am trying to decide if I can just deal with this choking sensation, and avoid surgery. But I play a lot of tennis and I don't know... I tend to wash my hair and get dressed which are activities that bring on the choking, coughing fit. I wonder if there's a surgery in my future or if I should just try to wait and see. Maybe after they drain the large cyst I'll feel less pressure? Problem is, I think that big one may not be the one causing most of my symptoms. I'm predicting the doctor won't want to operate. But I'm really just making all this up as I go along!!!!

Sorry to ramble here. I'm tired and it is late. I'm kind of surprised my hormone levels were normal because I'm tired, forgetful, have thinning of the outer 1/3 of my eyebrows, dry skin, funky stuff with my fingernails, and weight gain and a really bad bout of depression in the past year. I was hoping the thyroid might explain some of my "crazy". Ugh.

Lynn

Yes; cystic is fluid filled but remember, sonograms do have their short comings so I am glad you are getting an MRI. Suffice it to say, your thyroid is messed up.

I am so sad about your labs. They are so outmoded it is not funny. This is how we are treated. Somehow, you must convince some one to do the proper tests and you also need antibodies' tests as well.

At least they are ordering the MRI. While your TSH is in range, that means little to me for I know the antibodies are at work here. We have binding, blocking and stimulating antibodies. The first 2 are possibly blocking/binding the receptor site thus giving a false TSH in regards to what is "really" going on w/you.

Understanding thyroid lab tests.....http://www.amarillomed.com/howto/#Thyroid

Let us know when MRI is scheduled.

[lavender]

My last endo would actually print out a sheet telling me what tests he was ordering. I found that if I wanted anything additional, I could just ask him as he was preparing the sheet. Then, I had the order in my hand before I left the office. Unfortunately, it took 3-4 weeks to get results back from him. I have a new doc, and she ran labs the last time I saw her without telling me what she was running. It was my first appointment with her, and with everything else we discussed, asking her about the labs was not my first priority. The good news was that she mailed me results a few days after the appointment. I know I will have to take the bull by the horns and discuss labs the next time I see her. I have found that communicating with doctors and standing up for what I need is hard because the doctors often do know more than I do about a range of things, but do not necessarily know a lot about my particular issue, especially when it comes to thyroid.

[SnoodMama]

I think the FTI (Free Thyroxine Index) is the older fashioned way of estimating free T4. It isn't a measure of T1. I typed FT1 before because I didn't know the difference. I'm learning more as I go along. Anyway, they used to have to estimate how much of the T4 is free vs. bound and they multiply the Total T4 by the T3 Uptake percentage to get the estimated amount of free T4 in the blood. T3 uptake test actually doesn't measure T3, it is a measure of the % UNbound T4. So, they multiply the Total T4 by the % unbound to get an estimate of the Free T4. (in my case 5.9 x 32% = 1.88) But now they are able to just measure the Free T4 directly and that's more accurate than this estimation procedure.

So, my FTI (estimated free T4) is at the low end of the range. My TSH is 2.8. Given my symptoms I'm wondering if I'm slightly hypothyroid.

Hey, I called my HMO-referred Endocrinologist this a.m. and he can't see me till April!!! So, I said never mind and scheduled an appointment for next Tuesday with an Endocrinologist at UCLA. I'll have to pay more out-of-pocket, but hey. People spend $40K on cars. I'd rather drive a junker and be healthy. That's my 2cents.

Thanks for your help, you guys. It is like getting a degree in Endocrinology here. Actually, I used to study this stuff!!!! LOL. Now that I've learned about the basic testing stuff, I need to study the antibody tests and what they mean and maybe try to wrangle one of my bone-headed doctors into giving me more blood tests. It totally goes against my personality to call doctors and try to wrangle stuff out of them. I'm quiet and meek and a total pushover usually, but this calls for being a bit more ballsy.

Sorry I'm so rambling and wordy here. Thank you if you managed to wade through all my ramblings.

[lavender]

I know I have tried to read about the FTI and RT3, and they make no sense to me. I am glad you were able to make sense of it all, but I am sure you will feel much better once you get the right blood work done.
Sadly, it does seem that many good docs have long waiting lists. Perhaps you were just referred to an overloaded HMO doc. I hope the endo at UCLA is able to help you out.