Thyroid Sufferers - Tell Me Your Story

[grinningghost]

I'm waiting for my test results (blood) - I'm suspected of having a thyroid problem. I'm scheduled to have an ultrasound on the 14th, and it can't come soon enough - I feel like I have a lemon stuck in my throat and I'm constantly gagging.

I'm getting horrible sweats, clammy feelings, insomnia/fatigue, bad acne, oily skin, intestinal nightmares, etc. - it pretty much has taken over my world - and this lump in my throat - oy!

If you have/had thyroid problems, I really need to hear your stories - how it started, all that. The waiting is killing me.

 

[Christine]

Hi Patti!

I saw this post last night and ignored it because I didn't have "true" thyroid issues so I thought some of the other sufferers would post. But I see they didn't.

Anyway, my thyroid never caused me any symptoms but I did end up having thyroid cancer due to a single nodule.

I don't mean to scare you but I am glad you are seeing this through. Given that you have LOTS of symptoms and what sounds like a swelling of the gland, you probably have thyroid disease versus a malignancy. If the swelling is in the form of a nodule (and not the entire gland itself) you may end up needing surgery. Anything that effects your trachea and swallowing needs to come out.

Good luck!

 

[golfgal]

I am hypothyroid. I don't have any swelling/growths on my thyroid though. Mine failed when I was pregnant with our twins and was discovered by an ENT when I thought I had an ear infection. Turned out to be hearing loss and the thyroid issue. My TSH was at 95.

As far as having chronic health concerns, thyroid issues are usually really easy to treat, take a little pill each day, you are fine. Thyroid cancer is also the easiest to treat and has the highest survival rate. Usually just removing the thyroid takes care of any cancer. Often you don't need chemo or radiation if that is what you have-but chances are it is just a growth of some kind that is malignant.

 

[Blueeyes101817]

When i was 8, i had a lump on my thyroid so big that people could see it when they looked at my neck..I got my tumor and half of my thyroid removed--didnt start on any medications because i still had half my thyroid..

When i was 15, i had a couple more tumors on the other side of my thyroid and had them and my thyroid removed completely. After this, i went on Synthroid, since i had no thyroid left.

When i was 16, i had another surgery done--this time not thyroid, but scar tissue due to the other 2 surgeries.

I am now 22 and am still on these medications and will be for the rest of my life..Sometimes , my levels go crazy and thats when i get alot of the things you mentioned,,,horrible sweats, clammy feelings, insomnia/fatigue, bad acne, oily skin, i lose or gain weight, depending on how my levels are..

When the medications get leveled out, i start to feel better again.

I hope you get your results today--the waiting is the worst part!

 

[grinningghost]

Thanks so much for the replies, and I hope for even more.

I'm still waiting - I just called the doctor's office AGAIN, pretty much begging someone to call me today - waiting through the weekend will drive me nuts.

The lump in my throat is getting so annoying, that I don't even want to talk (which is probably making my husband a happy guy) . Everytime I speak, I feel like I'm going to gag and throw up.

 

[amid chaos]

Sounds like you have Graves' disease..an autoimmune disorder that causes you to be HYPERthyroid. I have opted to try and keep my thyroid and avoid surgery and radioactive iodine. It has taken awhile to get the right meds at the right dose, but I have a blood test next week and I am hoping to get a good report, I feel great. I have a great endocinologist who is willing to work with me. That is very important.

 

[grinningghost]

Sounds like you have Graves' disease..an autoimmune disorder that causes you to be HYPERthyroid. I have opted to try and keep my thyroid and avoid surgery and radioactive iodine. It has taken awhile to get the right meds at the right dose, but I have a blood test next week and I am hoping to get a good report, I feel great. I have a great endocinologist who is willing to work with me. That is very important.

Thanks. I've been doing so much reading on thyroid stuff, that I was also leaning toward believing hyper was more what I might be dealing with. So far though, no bulging eyes - at least not that I've noticed.

 

[celiesky]

I also have hypothyroid. I just got my medication regulated and I am starting to feel better. I didn't have a lump, just a lot of swelling. Please let us know when your test results come back and you will be in my thoughts!

 

[grinningghost]

I also have hypothyroid. I just got my medication regulated and I am starting to feel better. I didn't have a lump, just a lot of swelling. Please let us know when your test results come back and you will be in my thoughts!

Thank you. I definitely will post when they come back - and they better come back soon!

 

[javaj]

I am also interested in people's experiences. I recently found out I have hypothyroidism, and my mom and maternal grandfather also had hypothyroidism. It turns out that this was the likely cause of my pre-eclampsia during pregnancy. I am not on meds yet because my doctor thinks that the condition is pregnancy-related and is waiting to see if my TSH levels go back to normal within a reasonable period.

I'm 4 months postpartum right now. My TSH at 8 weeks postpartum was 6.9, and it was 5.9 about 5 weeks after that. They didn't find antibodies, whatever that means. My next blood draw is in a couple of weeks.

 

[grinningghost]

I am also interested in people's experiences. I recently found out I have hyperthyroidism, and my mom and maternal grandfather also had hyperthyroidism. It turns out that this was the likely cause of my pre-eclampsia during pregnancy. I am not on meds yet because my doctor thinks that the condition is pregnancy-related and is waiting to see if my TSH levels go back to normal within a reasonable period.

I'm 4 months postpartum right now. My TSH at 8 weeks postpartum was 6.9, and it was 5.9 about 5 weeks after that. They didn't find antibodies, whatever that means. My next blood draw is in a couple of weeks.

Yes - if someone could explain what the antibodies test thing means, I'd appreciate it. They tested me for that and I'm a little confused after reading the more technical jargon - I need an explanation from a real person.

 

[Best_Vacation_EVER!]

I've had two bouts of Graves (hyperthyroid) disease both of which eventually resolved using thyroid meds (Tapazol the first time and PTU the second time.) Each time lasted about 3 years. Both endocrinologists I saw definitely preferred to use meds instead of killing off the thyroid with radioactive iodine or surgical removal.

Everyones symptoms are probably a little different --- for me the insomnia, sensitivity to heat, and racing heart were the most problematic. Based on the results your doctor may do some additional tests --- the first time my doctor had me take a Radioactive Iodine Uptake test as well.

 

[amid chaos]

This group is excellent in answering questions in plain english..LOL

http://health.groups.yahoo.com/group/gravessupport/

 

[Christine]

I am also interested in people's experiences. I recently found out I have hyperthyroidism, and my mom and maternal grandfather also had hyperthyroidism. It turns out that this was the likely cause of my pre-eclampsia during pregnancy. I am not on meds yet because my doctor thinks that the condition is pregnancy-related and is waiting to see if my TSH levels go back to normal within a reasonable period.

I'm 4 months postpartum right now. My TSH at 8 weeks postpartum was 6.9, and it was 5.9 about 5 weeks after that. They didn't find antibodies, whatever that means. My next blood draw is in a couple of weeks.

You are not HYPERthyroid you are HYPOthyroid. With a TSH of 6.9 and 5.9 that is underactive thyroid not overactive.

The antibody test checks for Hashimoto's thyroiditis (and maybe Grave's also, not sure). Both Hashimoto's and Grave's are autoimmune disorders so there would be antibodies present if it was one of those disorders causing the thyroid problem. You can be hypothyroid without having an autoimmune disorder.

 

[AuntieM03]

I'm hypothryroid, but I never really noticed any symptoms. I found out during a routine blood test. I was put on thyroid medication, but I don't really feel any different than I did before. I did have a nice 6 mos after I first went on where my monthly cramps subsided a great deal. Unfortunately my body must have gotten used to the medication because now the cramps are back full force

 

[liznboys]

Hey there! I'm in the hyper club. lol I'm not on any meds...we are just monitoring my levels right now. I want to get past nursing my youngest before I proceed with anything... I've got a goiter (gosh that term is just lovely, isn't it?) You can't see it when you look at me, but *I* can tell it's there both feeling on the outside, and always feeling it there on the inside. Sometimes I have dull pain there. I also have Crohn's (an autoimmune disease), and my mother has Grave's. Fun stuff. lol

 

[rie'smom]

My problem is hypothyroidism too. All through my thirties,I had the symptoms but my levels were considered borderline. The doctors relied on bloodwork instead of physical symptoms-depression,dry skin tummy problems,etc. What threw them was that I was thin. So after 2 hospitalizations for depression,the doctors said that wow,according to the new info,you were hypothyroid and that's what caused your depression. Gee thanks. I'm now seeing an internist who doesn't even do thyroid blood work but rather looks at the patient not the paperwork. I've been fine now for several years. The point I'm making is don't let the doctors drop the ball. Keep on until you find the answer-I wish that I had.

 

[Makdyn]

I had a thyroid unltrasound done on my throad like two weeks ago. My doctor said that they were enlarged and wanted an ultrasound done. I the paper work I had to take with my said thyroid nodule. I have a follow up appointment a couple of days after thanksgiving.

 

[javaj]

Geez, what is wrong with me? I knew that, I was thinking and saying hypo but actually typed hyper! Thanks for the catch.

I have definitely been feeling "off" == kwim? I have been feeling the memory loss symptoms the most, I think. I used to be really organized but I have been pretty bad lately.

Thanks for the antibodies explanation.

You are not HYPERthyroid you are HYPOthyroid. With a TSH of 6.9 and 5.9 that is underactive thyroid not overactive.

The antibody test checks for Hashimoto's thyroiditis (and maybe Grave's also, not sure). Both Hashimoto's and Grave's are autoimmune disorders so there would be antibodies present if it was one of those disorders causing the thyroid problem. You can be hypothyroid without having an autoimmune disorder.

 

[grinningghost]

Just bumping up for more stories.