Thyroid, TSH, Nodule & Nervous

[lowie]

Last time i posted about my thyroid i got so many great answers....
i have been on synthroid for about 6 years, until recently my doc changed me to levoxyl because i was having terrible palpitations and dizzy spells on 150 mcg, but anything lower and my TSH was too high. i also have nodules/goiters (i admit i don't know if there is a difference) and my doc said that once my TSH is in control it should shrink.

well, this week, after about 6 weeks on the levoxyl 150, i'm feeling just AWFUL, tired, sick, blechy... plus my thyroid is so swollen i can barely swallow and you can see that my neck is swollen. i had blood work done on tuesday and was supposed to see the doc next wednesday. but i just couldn't stand feeling so terrible and called the doctor. seems that my TSH is perfect. they want me in for an ultrasound tomorrow.

i'm nervous. usually when i feel this yucky my hormones are outta whack. even as i'm typing this i'm nearly in tears. i have to go to a work meeting tonight that i can't miss, every time i swallow it feels like i'm going to choke. i just want to go to bed and feel better.

any words of wisdom to get me through til tomorrow?

 

[Christine]

Well, no real words of wisdom but at least you'll have *some* answers tomorrow.

It is my understanding that nodules are either solid or liquid cysts. I *think* a goiter is just when the entire gland enlarges.

In either case, unfortunately, I think you are on your way to a thyroidectomy.

It's funny, but 11 years ago when I had my nodule, one of my options was to be put on Synthroid for 6 months to see if my nodule would shrink. Apparently, having nodules shrink was the current thinking. My doctor, at that time, told me that in practice he had rarely ever seen a nodule shrink in response to taking thyroid hormone replacement. So I opted for surgery.

I guess tomorrow they will be looking at your thyroid to see exactly what part is enlarging. Try not to be scared. Worst case scenario is you will be having it removed and it's not so bad.

 

[crz4mm2]

Do you see an endocrinologist? What is your TSH?
Sounds like your thyroid is enlarged.
If you are not seeing an endo, I would find one asap.

 

[crz4mm2]

Well, no real words of wisdom but at least you'll have *some* answers tomorrow.

It is my understanding that nodules are either solid or liquid cysts. I *think* a goiter is just when the entire gland enlarges.

In either case, unfortunately, I think you are on your way to a thyroidectomy.

It's funny, but 11 years ago when I had my nodule, one of my options was to be put on Synthroid for 6 months to see if my nodule would shrink. Apparently, having nodules shrink was the current thinking. My doctor, at that time, told me that in practice he had rarely ever seen a nodule shrink in response to taking thyroid hormone replacement. So I opted for surgery.

I guess tomorrow they will be looking at your thyroid to see exactly what part is enlarging. Try not to be scared. Worst case scenario is you will be having it removed and it's not so bad.

I went on synthroid several years ago too. I had a 'cold' nodule and was hopeful mine would shrink. It did not. It grew slowly over the next few years. Eventually I was diagnosed with Hashimoto's thyroiditis. 1/2 of my thyroid was removed a couple of years ago. I am still on synthroid. It is sometimes very difficult to get under control. Just because your TSH is within the 'normal' lab value does not mean you feel good. A good endo will know that. My endo goes not only on the lab value but how I also feel. My TSH is kept at around 1 or a bit less than one. My GP thinks that anything less than 5 is "ok"

 

[AnnR]

You definately should be seeing an endocrinologist. I was told that Synthroid and it's generic version are not the same and I should stay on Synthroid. It is not good to switch between them. 150 mcg is a high dose. Do they test you for Free T4 also? TSH is the hormone the pituitary produces to tell the thyroid to produce T4. I became very anxious on Synthroid one time, my doctor lowered it slightly and I felt better. My pituitary doesn't work at all so it is just the T4 that I have tested.

Keep the thought that you will be better. I have gone through times when I thought I would never feel well again. But they pass.

Here is a site I found with some Thyroid info:

http://thyroid.about.com/library/howto/htthyroid-test.htm

take care
Ann

 

[4nana]

Sorry you are not feeling well on your new meds. Easier said than done I know, but I would try not to be over anxious as you may be having a reaction to the new meds or some other simple explanation. I also sometimes have difficulty swallowing, but it is unrelated and caused by GERD. I know you're scared, but try to think positive and hopefully your sono tomorrow will bring some peace of mind.

I also have two cold nodules produced by an autoimmune disease and have been diagnosed w/Hashimoto's thyroiditis. It took a few yrs to get stablized and I see my endocrinologist every 6 mos to have bld ck as she prefers my TSH 1 or less and frequent sonogram, etc. to re-ck nodules. Thankfully mine are still very tiny and have never progressed.

I was also on Synthroid, but last yr. endo switched me to Levoxyl due to cost factor. With our ins. Synthroid was $75 mo vs $10 mo for Levoxyl, even tho both are brand name. There seems to be much controversy on thyroid meds. So, as not to confuse 'brand' vs 'generic', I have copied a list I hope OP find useful.

Again, Good luck ((hugs))!

Thyroid Drugs Brand Names

Armour Thyroid
Cytomel
Levothroid
Levoxyl
Naturethroid
Synthroid
Tapazole
Thyrogen
Thyrolar
Unithroid
Westhroid

Generic Thyroid Drug Names

Levothyroxine /L-thyroxine
Liothyronine
Liotrix
Methimazole
Propylthiouracil / PTU
Natural Thyroid
Thyrotropin alfa
Thyroid Drug Manufacturers
Forest Pharmaceuticals
Genzyme
Jones Pharma
Knoll Pharmaceuticals
Western Research Laboratories

 

[Christine]

. My TSH is kept at around 1 or a bit less than one. My GP thinks that anything less than 5 is "ok"

Yeah, GPs in general, don't seem to be "in the know" on thyroid issues.

 

[Christine]

Sorry you are not feeling well on your new meds. Easier said than done I know, but I would try not to be over anxious as you may be having a reaction to the new meds or some other simple explanation. I also sometimes have difficulty swallowing, but it is unrelated and caused by GERD. I know you're scared, but try to think positive and hopefully your sono tomorrow will bring some peace of mind.

I also have two cold nodules produced by an autoimmune disease and have been diagnosed w/Hashimoto's thyroiditis. It took a few yrs to get stablized and I see my endocrinologist every 6 mos to have bld ck as she prefers my TSH 1 or less and frequent sonogram, etc. to re-ck nodules. Thankfully mine are still very tiny and have never progressed.

I was also on Synthroid, but last yr. endo switched me to Levoxyl due to cost factor. With our ins. Synthroid was $75 mo vs $10 mo for Levoxyl, even tho both are brand name. There seems to be much controversy on thyroid meds. So, as not to confuse 'brand' vs 'generic', I have copied a list I hope OP find useful.

Again, Good luck ((hugs))!

Thyroid Drugs Brand Names

Armour Thyroid
Cytomel
Levothroid
Levoxyl
Naturethroid
Synthroid
Tapazole
Thyrogen
Thyrolar
Unithroid
Westhroid

Generic Thyroid Drug Names

Levothyroxine /L-thyroxine
Liothyronine
Liotrix
Methimazole
Propylthiouracil / PTU
Natural Thyroid
Thyrotropin alfa
Thyroid Drug Manufacturers
Forest Pharmaceuticals
Genzyme
Jones Pharma
Knoll Pharmaceuticals
Western Research Laboratories

Great post! Just to add to this: it is actually okay to take a generic thyroid preparation AS LONG AS YOU CAN STICK WITH THE SAME MANUFACTURER. For instance, say you have your prescription filled at Target and you get thyroid medication that say "levothyroxine" (generic) manufactured by Forest Pharmaceuticals. Then next month you go in and get a refill but this time it says that it was made by Jones Pharma. This is not good. Because each one might be slightly different, you are going to get a different response internally. One may contain different fillers than the other and your body may absorb it differently. But as long as you can consistently get the same company to produce your generic, you will be okay. I'm not sure how the Wal-Marts, Targets, etc, get their generics. Do they buy from the same company, do they change often?

Personally, I have not tried a generic but I have been on Synthroid, Levothroid, and Levoxyl. Synthroid and Levothroid could be used interchangeably for me. When I used Levoxyl I had to go to a higher dose because it didn't bring my TSH down as well as the other two brands. But really, that's no big deal either.

 

[lowie]

Do you see an endocrinologist? What is your TSH?
Sounds like your thyroid is enlarged.
If you are not seeing an endo, I would find one asap.

yes, i do see an endo, have been for years. my TSH is 1.7, the lowest it's been since i was diagnosed.
i'll post an update later today, hopefully the doc will read the ultrasound in the office.

 

[lowie]

Personally, I have not tried a generic but I have been on Synthroid, Levothroid, and Levoxyl. Synthroid and Levothroid could be used interchangeably for me. When I used Levoxyl I had to go to a higher dose because it didn't bring my TSH down as well as the other two brands. But really, that's no big deal either.

isn't that weird. levoxyl has, so far, been the only med to bring my TSH down. the lowest i've been on synthroid was 3.3. doc always wants me a tad lower but that's when the dizziness and palps start. :::knocking wood::: with my TSH as low as it is now, i haven't had those symptoms, just feel like my thyroid is HUGE plus new annoying things.. grrrr

 

[crz4mm2]

yes, i do see an endo, have been for years. my TSH is 1.7, the lowest it's been since i was diagnosed.
i'll post an update later today, hopefully the doc will read the ultrasound in the office.

Ok. That's good. My endo wants my TSH 1 or less. I feel pretty good when it is a bit less than 1.
Interesting enough, I got generic once (I used to use generic YEARS ago when I first went on thyroid meds, but was switched to Synthroid when dx with Hashimoto's) and my TSH soared to 6.7.... in ONE month. boy did I feel like crap.

It sure is a tough balancing act.

Good luck to you. I did well with my surgery. I put up with the nodule slowly growing for several years before I had surgery. It was the swallowing problem that finally convinced me it was time.

 

[Charade]

bookmarking this for my dgf who was just diagnosed with Hashimoto's and put on synthroid.

 

[lowie]

my doc wasn't even in the office for the ultrasound and i complained that i've been trying to be seen for three days and then they want me to go through the weekend feeling awful. so the doctor came in, acted like a butt, told me there is nothing wrong with me and that if i really feel so bad i should go to the ER.
first thing monday morning i'm finding a new endo, one who cares a little

 

[AnnR]

Good for you. Check to make sure your new endo has experience with thyroid problems.

I once read that endocrinologists are the most arrogant of the doctors. I have to agree. Mine quit seeing me after I questioned him about doses etc. Luckily I have a very good GP.

 

[4nana]

my doc wasn't even in the office for the ultrasound and i complained that i've been trying to be seen for three days and then they want me to go through the weekend feeling awful. so the doctor came in, acted like a butt, told me there is nothing wrong with me and that if i really feel so bad i should go to the ER. first thing monday morning i'm finding a new endo, one who cares a little

I am so sorry . How very upsetting!!! WTH kind of dr would not care to see someone who is in pain and upset, then tell you nothing is wrong and to go to the ER ?!?!?! Just what you need when you're not feeling well and anxious . Keep your spirits up sweetie and good luck on finding another endo. Hope you'll feel better soon.

Great post! Just to add to this: it is actually okay to take a generic thyroid preparation AS LONG AS YOU CAN STICK WITH THE SAME MANUFACTURER. For instance, say you have your prescription filled at Target and you get thyroid medication that say "levothyroxine" (generic) manufactured by Forest Pharmaceuticals. Then next month you go in and get a refill but this time it says that it was made by Jones Pharma. This is not good. Because each one might be slightly different, you are going to get a different response internally. One may contain different fillers than the other and your body may absorb it differently. But as long as you can consistently get the same company to produce your generic, you will be okay. I'm not sure how the Wal-Marts, Targets, etc, get their generics. Do they buy from the same company, do they change often?

Personally, I have not tried a generic but I have been on Synthroid, Levothroid, and Levoxyl. Synthroid and Levothroid could be used interchangeably for me. When I used Levoxyl I had to go to a higher dose because it didn't bring my TSH down as well as the other two brands. But really, that's no big deal either.

Thx Christine, appreciate all the info we can get when it comes to the know on thyroid and meds. Seems to be such a fine balancing act to follow and Lord help us when it's off.

Good for you. Check to make sure your new endo has experience with thyroid problems.

I once read that endocrinologists are the most arrogant of the doctors. I have to agree. Mine quit seeing me after I questioned him about doses etc. Luckily I have a very good GP.

Sadly my GP is the one who would not refer me to a endo, he felt my thyroid was within normal range w/TSH of 7+!?!?! Alrighty then! So I went on my own, but unfortunatley endos are very scarce in our area. In fact, I am on my 3rd . My first was at Georgetown Hospital and I was happy with her, but she gave up her practice and moved back home to be with family when she lost her sister to cancer. My second endo was more local to me, however he was ederly, scariest thing on 2 feet and poor thing had very crippled hands that shook and gave me the willies when around my neck , thankfully he retired! Then lo and behold, I was blessed to find a female endo close by who I absolutely love - she's young, pretty, compassionate and thankfully superb in her field.

Good luck to all those suffering with thyroid problems ((hugs)). It is definitely a real challenge we need to keep on top of if we want to feel better and maintain a descent balancing act.